Mapping the Uncharted Journey: Constructing a Journey Map for Caregivers of Patients with Intracranial Tumors Based on a Systematic Review of Qualitative Research

Mapping the Uncharted Journey: Constructing a Journey Map for Caregivers of Patients with Intracranial Tumors Based on a Systematic Review of Qualitative Research | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Mapping the Uncharted Journey: Constructing a Journey Map for Caregivers of Patients with Intracranial Tumors Based on a Systematic Review of Qualitative Research Fei NI, Yang LIU, Xutong ZHENG, Hui SUN, Jinan FANG, Aiping WANG This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8704501/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 13 You are reading this latest preprint version Abstract Objective This study aims to synthesize qualitative evidence to construct a journey map delineating the experiences and needs of caregivers of patients with intracranial tumors. Methods A systematic literature search was conducted across six electronic databases (PubMed, Web of Science, CINAHL, EMBASE, Scopus, and PsycINFO) from their inception to December 2025, supplemented by manual searches of reference lists from relevant articles.This review focused on the lived experiences, perceptions, unmet needs, and emotional states of informal caregivers of individuals with intracranial tumors.Two researchers independently screened the literature and assessed the methodological quality of included studies using the Critical Appraisal Skills Programme tool for qualitative research.Data extraction was then performed to collate pertinent information, and thematic analysis was employed to summarize and synthesize the findings from the included studies.This qualitative systematic review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and the Enhancing Transparency in Reporting the Synthesis of Qualitative Research statement. Results This review included 18 articles and constructed a caregiver journey map encompassing six sequential phases: screening and diagnosis phase, perioperative period, continuing treatment phase, disease progression phase, hospice care phase, and bereavement and reconstruction phase.This journey map systematically delineates the core tasks, emotional experiences, primary pain points, potential opportunity points, and relevant stakeholders for caregivers at each phase. Conclusion The caregiver journey map for patients with intracranial tumors developed in this study innovatively integrates the complex experiences and needs of caregivers across the entire disease trajectory in a visual and phased manner.This map provides a structured toolkit for clinical healthcare professionals, offering an evidence-based foundation for future clinical practices such as phased supportive needs assessment, multidisciplinary collaboration, implementation of precise supportive interventions, and optimization of continuous care services. Furthermore, it establishes an evidence-informed framework for healthcare and education administrators as well as policymakers to optimize resource allocation and design continuous support services. Intracranial tumors Caregivers Journey mapping Systematic review Figures Figure 1 Figure 2 Background Intracranial tumors, as a category of neurological diseases characterized by high incidence, mortality, and disability rates, have become a significant global public health challenge[1–3]. These conditions not only impose severe physical and psychological impacts on patients but also place substantial disease burdens and economic pressures on their families and the broader healthcare system[4,5]. With advances in diagnostic and therapeutic technologies, patients’ survival periods have been extended, meaning their families often face a longer, more complex, and uncertain caregiving journeytime. Throughout this process, family caregivers play an indispensable and central role. They typically assume multiple responsibilities: serving not only as daily care providers and participants in medical decision-making but also as collaborators in rehabilitation efforts and crucial communication bridges between patients and the healthcare system[6–8]. However, this central role also exposes caregivers to a context of multidimensional stressors. They must simultaneously manage high medical and financial burdens, maintain routine family functions, coordinate personal career development, and navigate dynamic adjustments in family roles and relationships[9–11].Remaining in such a high-stress state over the long term often results in caregivers’ physical and mental health needs being overlooked or deprioritized, which can trigger a range of long-term health impairments, including anxiety, depression, post-traumatic stress disorder (PTSD), and chronic physical fatigue[12–15]. Additionally, caregivers often suppress their own grief and exhaustion in front of patients, consistently presenting a positive and stable emotional state to serve as an emotional anchor for the patient. This emotional management consumes considerable psychological energy and lacks appropriate outlets for release, leading to an accumulation of emotional burden[16].At the family and societal levels, primary caregivers may experience conflicts with relatives due to inequitable distribution of caregiving responsibilities, or become socially isolated as they gradually disengage from their original social networks after prolonged focus on caregiving[17]. On the practical front of caregiving, they must also navigate complex tasks such as understanding specialized medical terminology, evaluating different treatment options, and handling medical reimbursement procedures. The challenges of information asymmetry and the significant responsibility of decision-making often leave them feeling inadequately informed and overwhelmed, especially when facing major medical choices where they carry heavy ethical and emotional burdens [18].Therefore, gaining an in-depth understanding of the holistic challenges caregivers face in this complex caregiving context, the mechanisms through which stressors operate, and their specific support needs—and subsequently developing systematic and effective multidimensional support strategies—holds important theoretical and practical significance for alleviating caregiver burden, improving the quality of family care, and enhancing patient outcomes. In recent years, the burden and needs of caregivers for patients with intracranial tumors have gradually garnered academic attention. Existing studies have widely revealed that this group has significant and unmet needs in areas such as information acquisition, caregiving skills, psychological support, and access to social resources[19,20]. However, much of this research has certain limitations: it often focuses on specific phases such as the perioperative or end-of-life phases, while relatively neglecting other critical stages within the prolonged disease course, such as the continuation treatment phase and disease progression phases[21–23]. This phase-specific focus fails to fully capture the genuine picture of how caregiver burden and needs dynamically evolve along the disease trajectory. In contrast, within other chronic disease fields, research adopting a "whole-course, stage-specific" approach to explore caregiver experience is already relatively common[24,25]. Currently, there is a lack of an integrated framework capable of holistically depicting the dynamic evolution of intracranial tumor caregivers' experiences, and a failure to systematically elucidate the key challenges, critical transition points, and corresponding potential support pathways at different stages. The absence of this holistic perspective hinders the effective development and implementation of targeted, continuous support intervention systems and public health policies. Journey mapping, as a systematic visualization tool, is commonly used to describe and evaluate an individual's overall experience within a healthcare process. It presents an individual's behaviors, perceptions, and feelings throughout their medical journey in a phased and contextualized manner[26]. The strength of journey mapping lies in its robust potential for synthesis and insight generation. It can integrate fragmented evidence to synthesize findings from heterogeneous studies into a coherent, holistic narrative framework[27]. Furthermore, it is capable of identifying key caregiver pain points, clearly revealing the core challenges and supportive care needs they face across different stages of care[28]. Currently, journey mapping has been widely applied in fields such as gestational diabetes[29], cardiovascular and cerebrovascular diseases[30,31], sleep disorders[32] disability[33], and infectious diseases[34]. Within caregiver research specifically, existing literature indicates that the journey mapping method has been preliminarily applied to depict the caregiving trajectory of caregivers for patients undergoing total knee arthroplasty[35] and the psychological and social adaptation journey of partners in high-risk pregnancies[36]. However, a systematic literature review reveals that few studies have applied journey mapping to depict the experiences of the specific population of caregivers for patients with intracranial tumors. From this methodological perspective, this study aims to systematically synthesize qualitative evidence to construct a clearly defined caregiver journey map. This map will systematically delineate the tasks undertaken, emotional fluctuations, core pain points, and potential intervention opportunities for caregivers across distinct stages, including the screening and diagnosis phase, perioperative period, continuation treatment phase, disease progression phase, end-of-life care phase, and the bereavement and reconstruction phase. It will also identify the key stakeholders involved and their patterns of interaction at each stage. By systematically visualizing this journey, the map will intuitively reveal the dynamic evolution of caregiver experiences and their stage-specific needs. This will provide a robust empirical foundation for developing stage-specific personalized support programs, formulating targeted public health and policy initiatives, guiding educational reforms, and planning future longitudinal research. Ultimately, the goal is to enhance the overall well-being of family caregivers and improve the quality of care for patients with intracranial tumors. Design and methods Study design This systematic review is reported in accordance with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines[37] and strictly adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement[38]. Furthermore, the study protocol has been prospectively registered with the International Prospective Register of Systematic Reviews (PROSPERO) under registration number CRD420251244021. Data sources and search strategy The search strategy was pre-defined by the research team. We conducted computerized searches in PubMed, Web of Science, Scopus, Embase, CINAHL, and PsycINFO. The search was limited to articles published from the inception of each database until December 2025. A snowball search was performed on the reference lists of included studies and relevant systematic reviews. Boolean logic was employed to combine Medical Subject Headings (MeSH) terms and keywords. The search strategy comprised three categories of terms: intracranial tumors, caregivers, and qualitative research. The complete search strategy is available in Supplementary File 1. Study selection We developed the inclusion and exclusion criteria for the study based on the PICOS framework (Table 1 )[39]. Table 1 Inclusion and exclusion criteria for studies. Items Inclusion criteria / exclusion criteria Inclusion criteria P-Population Informal caregivers of patients with intracranial tumors are defined as family members, partners, relatives, or friends (aged ≥ 18 years) who provide unpaid daily care, emotional support, or practical assistance to patients with intracranial tumors. I-Intervention The experiences, perceived needs, and feelings of informal caregivers of patients with intracranial tumors. C-Context The experiences of informal caregivers of patients with intracranial tumors can occur in any setting, such as the home, hospital, nursing home, hospice, or long-term care facility. O-Outcome The experiences, perspectives, and needs of informal caregivers of patients with intracranial tumors. S-Study design Any qualitative study, including but not limited to phenomenology, ethnography, descriptive qualitative research, grounded theory, and mixed-methods designs; for mixed-methods studies, only the qualitative components were included. Exclusion criteria (1) Studies in which the experiences of informal caregivers of patients with intracranial tumors are mixed with those of the patients and cannot be clearly distinguished. (2) Studies from which qualitative data cannot be extracted. (3) Studies not published in English. (4) Books or book chapters, essays, theses or dissertations, commentaries, and conference abstracts. Data extraction Search results were exported from the electronic databases to EndNote X21. After removing duplicate citations, two authors (NF and LY) independently screened the titles and abstracts against the eligibility criteria. If the information in the title and abstract was ambiguous, the full text of the article was reviewed to determine its eligibility. Studies meeting the inclusion criteria underwent a full-text review. Following full-text screening, a total of 18 studies met the final inclusion criteria. At each stage, records were independently reviewed by the two authors (NF and LY). Disagreements were resolved through discussion within the research team, and reasons for exclusion were documented. Risk of bias assessment The quality of the included studies was assessed using the Critical Appraisal Skills Programme (CASP) checklist[40]. The appraisal results were verified by two authors (NF and LY), with a third author (XT) available to resolve any conflicts. This checklist comprises ten criteria: clarity and appropriateness of the research aims, methodology, research design, recruitment strategy, data collection, the relationship between researchers and participants, ethical considerations, data analysis, findings, and the value of the research. Each criterion requires a response of "yes," "no," or "cannot tell." This tool enabled a thorough familiarization with the content of the papers and established a foundation for assessing the methodological limitations of the findings synthesized in this review. Data extraction process Following a comprehensive full-text review, two researchers extracted the relevant information required for this systematic review into a pre-structured Excel spreadsheet. The extracted information primarily included the author(s)' name(s), year of publication, study objectives, patient characteristics, caregiver characteristics, recruitment settings and sample sampling methods, research methods, analytical methods, and main findings. We employed thematic analysis to conduct an in-depth exploration of the interview data. The data synthesis followed the three-stage thematic synthesis method proposed by Thomas and Harden[41]. In the first stage, two researchers independently reviewed the articles and performed line-by-line coding using NVivo V.12.0, focusing on the authentic experiences, underlying needs, and feelings of intracranial tumor caregivers. The coded data were subsequently subjected to collective reflection and discussion. In the second stage, the independent codes were grouped into descriptive themes. The researchers then cross-checked and discussed these groupings to minimize subjective bias and conceptual redundancy among the codes, ensuring the themes accurately represented the included studies. To ensure reliability, the researchers regularly reviewed and discussed coding consistency. In the final stage, overarching analytical themes were developed from the descriptive themes. Based on these synthesized analytical themes, a journey map was created to analyze the experiences and perceptions of intracranial tumor caregivers throughout the entire caregiving trajectory. Results Search and selection results A comprehensive search across six English-language electronic databases yielded a total of 18,518 studies. Among these, 4,233 records were identified as duplicates and subsequently removed. After screening titles and abstracts, 14,167 articles were excluded based on the eligibility criteria, leaving 118 articles selected for full-text review. For various reasons, 100 articles were excluded (Fig. 1 ). A manual search of the reference lists of relevant articles did not identify any additional eligible studies. Consequently, 18 articles were ultimately included in this meta-synthesis. Study characteristics Among the 18 studies included in this review, 17 employed a qualitative design, and 1 utilized a mixed-methods design. Of the 17 qualitative studies, the designs comprised descriptive qualitative research (n = 7), phenomenological research (n = 5), and grounded theory research (n = 5). The specific qualitative methodology within the mixed-methods study was not explicitly stated. Regarding data analysis, thematic analysis was applied in 15 studies, while content analysis, phenomenological hermeneutics, and the constant comparative method derived from grounded theory were each employed in one study, respectively.The included articles were published between 2008 and 2025. The sample sizes in these studies ranged from 6 to 92 caregivers, with ages spanning from 18 to 84 years. In the studies included in this review, the majority of caregivers (79.9%) were spouses of the patients, while 20.1% comprised the patients' parents, children, other relatives, or friends.The studies were conducted across eight countries. Over 50% of the included studies were concentrated in European countries, including the United Kingdom (n = 3), Denmark (n = 3), Turkey (n = 1), Belgium (n = 1), and Sweden (n = 1). The remaining studies were conducted in North America, comprising the United States (n = 3) and Canada (n = 1), and in Oceania, specifically Australia (n = 4). One additional study was conducted jointly in Australia and Denmark.Study characteristics are summarised in Table 2 . Table 2 Characteristics of included studies. Authors Countries Objectives Patient characteristics Caregiver characteristics Recruitment Setting,Sampling Method Research methods Analysis methods Theme Schmer 2008[42] United States To explore the caregiver perspective of providing care during the initial 6 months of chemotherapy treatment for a primary malignant brain tumor. Type of intracranial tumor: Primary malignant brain tumor (e.g., astrocytoma, glioblastoma). Age and gender: Were not reported in the study. Sample Size: N = 10 Age, Gender: Not reported. Relationship to Patient: spouse (n = 7), daughter (n = 2), and son-in-law (n = 1). a single institution located in an urban Midwestern city in the United States Purposeful sampling Phenomenological Research Thematic Analysis 1.The diagnosis of a brain tumor is a shock. 2.Immediate family role changes occur. 3.There are psychosocial effects for the caregiver, his or her family, and the person with the brain tumor. Schubart 2008[43] United States Research on the specific challenges faced by family caregivers in caring for brain tumor patients, including caregiving tasks, decision-making, and information and support needs. Type of intracranial tumor: Primary brain tumor (e.g., Glioblastoma, Anaplastic oligoastrocytoma, etc.) Age range: 20–70 + years Gender: Not reported Sample Size:N = 25 Age range: 37–72 years Gender: 18 females, 7 males Relationship to patient: spouse (n = 18),parent(n = 4), children(n = 2), sibling(n = 1). Neuro-Oncology Center at the University of Virginia Health System Purposive and stratified sampling Grounded Theory Thematic Analysis 1.Family issues Relationships and changing rolesHelping with activities of daily livingnursing duties; Employment and financial issues; Balancing the needs of other family members; 2.Managing challenging behaviors Understanding neurocognitive changes; Dealing with depression and personality changes; Dealing with impulsivity or aggressive behavior; 3.Personal feelings Feeling overwhelmed; Denial; Resentment, anger, guilt, depression,and anxiety; ;Lsolation Sense making; 4.Navigating through the medical system lmproving physician-caregiver communication; Understanding the medical system. McConigley 2010[44] Australia To articulate the experiences of family caregivers of people diagnosed with high-grade glioma. To describe the information and support needs of these family caregivers. Type of intracranial tumor: Astrocytoma Grade 3–4 And Glioblastoma multiforme Age range: 30–39 (n = 1), 40–49 (n = 3), 50–59 (n = 9), 60–69 (n = 5), 70+ (n = 2), Missing data (n = 1) Gender:Male (n = 16), Female (n = 5) Sample Size: N = 21 Age range: 30–39(n = 2),40–49(n = 2),50–59(n = 10),60–69(n = 6),70+: (n = 1) Gender:Male(n = 4); Female(n = 17) Relationship to Patient: Spouse/partner: (n = 20),Parent(n = 1) The medical oncology department of a tertiary referral centre for neurological cancers in Western Australia. Purposive sampling Grounded Theory constant comparison method Central theme: A Time of Rapid Change Sub-themes: Renegotiating Relationships; Learning to be a Caregiver. Tastan 2011[45] Turkey To determine and classify the experiences of the relatives of patients who underwent cranial surgery for a brain tumor during the perioperative period and home care. Type of intracranial tumor: Glioblastoma,Astrositoma,Schwannoma,Oligodendrioglioma,Pituitary adenoma Age range: Mean ± SD: 40.1 ± 15.4 years Gender:Male (n = 6), Female (n = 4) Sample Size: N = 10 Age range: Mean ± SD:38 ± 9.95 years Gender:Male(n = 4); Female(n = 6) Relationship to Patient: Spouse (n = 4), Offspring (n = 4), Parent (n = 1), Sibling (n = 1) Neurosurgery department of a military training and research hospital in Turkey. Purposive sampling Descriptive qualitative study Thematic Analysis 1. Personal Feelings First Reactions: Shock and Fear of Death; Decision for Surgery: Helplessness or Acceptance; First Meeting With the Patient After Surgery: Happiness or Fear; Ambiguity: Anxiety; 2. Management of the Changes Management of the Side Effects of the Tumor; Management of Role and Behavioral Changes; Management of Care in the Home; Social Support; 3. Need for Knowledge About Managing the Disease Need for sufficient information on surgical procedures, complications, patient care, and home care (half of participants reported insufficient information, while the other half considered it adequate) Process. Shortman 2013[46] United Kingdom 1.To explore the impact of having a child with a brain tumour on the main caregiver in the family. 2.To describe mothers’ experiences of coping with their child’s illness, including personal barriers and strengths. 3.To identify causes of stress and sources of support to inform improvements in care delivery. Type of intracranial tumor: Not explicitly specified in the study Age range: 8–13 years,Median age: 10.5 years Gender:Male (n = 4), Female (n = 2) Sample Size: N = 6 Age range: Not reported Gender: Female Relationship to Patient: mothers a group of caregivers enrolled in a longitudinal study of outcome following diagnosis of a childhood brain tumour Purposive sampling Descriptive qualitative study Thematic Analysis 1.Impact 2.Coping 3.Help and Support 4.Conflict 5.Hindrance and Heartache Collins 2014[47] Australia 1.To provide an in-depth exploration of the needs and concerns of people caring for patients with primary malignant glioma (PMG). 2.To develop greater understanding of these care needs during the patient’s palliative illness phase. 3.To obtain insight into bereaved family members’ experiences of caring for someone with PMG. Type of intracranial tumor: High-grade primary malignant glioma (PMG grades III–IV) Age and gender: Were not reported in the study. Sample Size: N = 23 Age range: 27 years to 77 years (median 54 years) Gender:Male(n = 9); Female(n = 14) Relationship to Patient:Spouse/partner (n = 17), Child (n = 4), Other (n = 2) Neurosurgery, oncology and palliative care services of two Australian metropolitan hospitals. Purposive sampling Grounded Theory Thematic Analysis 1.The challenge of caring: The enormity of the caring role; Neurocognitive changes and unique illness trajectory of PMG; The complexity of living with an uncertain yet poor prognosis; 2.The lack of support available to carers: Lack of care coordination and continuity; Lack of individualised information; Lack of preparation; Lack of emotional support; Inconsistencies of service provision; 3.The suffering of caring: Relentlessness of caring; Loneliness of caring; Ongoing suffering for bereaved carers. Coolbrandt 2015[48] Belgium 1.To explore the experience of family caregivers of patients with high-grade glioma (HGG). 2.To identify family caregivers’ needs related to professional care. Type of intracranial tumor: High-grade glioma (HGG) Age and gender: Were not reported in the study. Sample Size: N = 16 Age range: Mean 54.2 years (range 31–68 years) Gender:Male(n = 6); Female(n = 10) Relationship to Patient:partner (n = 13), Parents (n = 2), Friend (n = 1) Oncology wards of the University Hospitals Leuven, Belgium. purposive sampling Grounded Theory Thematic Analysis 1.Experiences of Family Caregivers: Feeling lost and alone in a new life; Committed but struggling to care; 2.Caring Needs: Need for information; Need for consideration and support; Need for aligned professional care. Piil 2018[49] Denmark To explore the perspectives of newly bereaved caregivers to patients with high-grade glioma (HGG) regarding end-of-life (EOL) caregiving and their bereavement experiences. Type of intracranial tumor: High-grade glioma (HGG): glioblastoma、anaplastic astrocytoma (AA) grade III Age range:50–68 years old Gender: Were not reported in the study. Sample Size: N = 8 Age range: Mean 48 years (range not fully specified, individual ages 28–60 years) Gender:Male(n = 6); Female(n = 10) Relationship to Patient:Wife (n = 4), Husband (n = 1), Son (n = 1), Daughter (n = 1) Neuro-oncological Rehabilitation (NEON Rehab) study purposive sampling Descriptive qualitative study Thematic Analysis 1.Late-stage caregiving is comprehensive and taxing. 2.Releasing the responsibility of the primary caregiving role: 3.Feelings of grief and relief: 4.Suggestions for clinical practice: Francis 2020[50] Denmark To explore ethical dilemmas spouses experience in the everyday care of a partner in treatment for primary malignant brain tumour. Type of intracranial tumor: Primary malignant brain tumour (PMBT). Age and gender: Were not reported in the study. Sample Size: N = 10 spouses Age range: 36 to 76 years. Gender:Male(n = 3); Female(n = 7) Relationship to Patient:Spouses An oncology ward at a university hospital in Denmark. Spouses often drove their partner to the hospital which allowed for recruitment. purposive sampling Descriptive qualitative study Thematic Analysis Main theme: "Oscillating in a changing relationship". Subthemes: 1."Doing the right thing in unpredictable daily situations". 2."Torn between patience and guilt". 3."Living in a time of uncertainty, hope and despair". Kirby 2022[51] Australia To better understand the everyday experiences of home-based informal caregivers of people living with glioma in Queensland, Australia, and explore how the various experiences, demands, and social and relational dynamics in/of informal care (re)produce forms of isolation and loneliness. Type of intracranial tumor: Glioma Age range:24 to 84 years Gender: Were not reported in the study. Sample Size: N = 32 Age range: 18 to 84 years. Gender:Male(n = 11); Female(n = 21) Relationship to Patient:Partners (n = 17), parents (n = 5), children (n = 4), siblings n=(2), friends (n = 4). A tertiary metropolitan hospital in Queensland, Australia Purposive sampling. Phenomenological Research Thematic Analysis(Framework Approach) 1.The ‘need’ to be near the care recipient, and the implications for caregiver mobility; 2.The strong sense of responsibility for care, and the virtues of ‘good’ caring; 3.Experiences of loneliness in the company of others; 4.Postponement of social connection and minimising the self. Francis 2022[52] Denmark To investigate spouses’ experiences of suffering in their role as main caregiver of a partner with primary malignant brain tumor (PMBT). Type of intracranial tumor: Primary malignant brain tumor (PMBT). Age range And Gender: Were not reported in the study. Sample Size: N = 10 spouses. Age range: 36 to 76 years. Gender:Male(n = 3); Female(n = 7) Relationship to Patient:Spouses An oncology ward at a university hospital in Denmark Purposive sampling A hermeneutic qualitative interview design Brinkmann and Kvale’s 5-step hermeneutic analysis guide Three central themes with two subthemes each: Central Theme 1: Enduring everyday life Struggling with exhaustion; Suppressing emotions and losing the grip; Central Theme 2: Being overlooked and hurting Disappointed at check-ups; Burdened by kind but ignorant friends and close family members; Central Theme 3: Being acknowledged and feeling good Small things matter; Quality time with a sensitive friend or family member. Sayal 2023[53] Canada To explore the experience of parental caregivers caring for medulloblastoma survivors, including family experiences, social circumstances, and family-reported impact. Type of intracranial tumor: Medulloblastoma Age range:Median age at diagnosis was 7 years (range: 1–9 years); median age from treatment at interview was 9.5 years (range: 5–12 years). Gender:Male(n = 12); Female(n = 8). Sample Size: N = 20 Age range: Were not reported in the study. Gender:Male(n = 15); Female(n = 5) Relationship to Patient:Parental caregivers Specialized survivor clinics at two large quaternary centers in Toronto, Canada Purposive sampling grounded theory Thematic Analysis Three major themes with associated subthemes: Central Theme 1: Significant long-term challenges associated with child’s survivorship Medical treatment sequelae; School issues and behavioral concerns; Surveillance and access to care; Central Theme 2: Impact on personal and family QOL linked to survivor’s QOL Parental QOL; Parental mental health and coping; Spousal relationships; ffects on the family unit as a whole; Central Theme 3: Conflicting emotions related to survivor Feeling happiness with concurrent worry, fear, and stress; Concerns about the future. Rimmer 2024[16] United Kingdom To explore the emotional impact of informal caregiving for people with lower-grade gliomas (LGGs), including experiences related to the illness, uncertain prognosis, care recipient changes, and caregiving responsibilities. Type of intracranial tumor: Lower-grade gliomas (grade 2 astrocytoma, grade 2 or 3 oligodendroglioma). Age range:mostly in their 30s and 40s And Gender:Were not reported in the study. Sample Size: N = 19 Age range: Mean age 54.6 years (range 36–78 years) Gender:Male(n = 5); Female(n = 14) Relationship to Patient:spouses(n = 15),sisters(n = 2), mothers(n = 2). United Kingdom. Recruitment channels included NHS collaborating sites, nominations from LGG patients in another project phase, and dissemination via The Brain Tumour Charity’s networks. convenience sampling,snowball sampling Descriptive qualitative study Thematic Analysis One overarching theme and three core themes with associated subthemes: Overarching Theme: Emotional responses to the illness Subtheme 1: Feeling helpless Subtheme 2: Feeling distress Subtheme 3: Adjusting and managing Core Theme 1: Emotional responses to the unknown Subtheme: Anxiety about future uncertainty Core Theme 2: Emotional consequences of care recipient changes Subtheme 1: Challenges of changed relationship dynamics Subtheme 2: The need to be resilient Core Theme 3: Emotional weight of the responsibility Subtheme 1: Feeling responsible Subtheme 2: Feeling burnout Clarke 2024[54] Australia (i) To explore what carers of people with high-grade glioma (HGG) perceive could improve their preparedness to care; (ii) To identify what needs carers reported they required additional support with. Type of intracranial tumor: High-grade glioma (HGG), encompassing grade III and IV glioblastoma. Age range And Gender: Were not reported in the study. Sample Size: N = 92 Age range: Were not reported in the study. Gender:Male(n = 18); Female(n = 74) Relationship to Patient:Spouses/partners accounted for the majority (89%, 82/92) Participating neuro-oncology clinical sites in Australia (as part of the Care-IS randomized controlled trial). Purposive sampling exploratory qualitative study with content analysis (Secondary analysis) Content analysis Theme 1: Carer needs Carer’s emotional well-being; Carer’s practical needs; Theme 2: Providing emotional and practical care Providing emotional care; Providing practical care; nderstanding and accessing available support; Understanding the treatment process; Theme 3: Coping with uncertainty Uncertainty about illness progression, prognosis, and support needs Theme 4: Coping with the consequences of illness progression Physical consequences; Psychological consequences; Interpersonal consequences; Theme 5: Processing and supporting end-of-life care Understanding late-stage illness, coping with impending death, discussing death with the patient McDougall 2025[55] Australiaand Denmark Primary objective: To explore the unspoken, taboo thoughts and difficult emotions experienced by carers supporting individuals with brain tumour-related personality and behaviour changes. Secondary objective: To examine the coping strategies used by these carers. Type of intracranial tumor: Primary malignant brain tumour (PMBT), including glioblastoma (12 cases), astrocytoma (1 case), oligodendroglioma (1 case); tumour grade III (6 cases) and IV (8 cases). Age range: Australia (mean: 55 years, range: 45–65 years); Denmark (mean: 53 years, range: 44–66 years). Gender:Were not reported in the study. Sample Size: N = 13 Age range: 42–68 years Gender:Male(n = 1); Female(n = 12) Relationship to Patient:Spouses(n = 12), sibling(n = 1) Australia – brain tumour organisations, Denmark – neuro-oncology outpatient clinic at Copenhagen University Hospital. Purposive sampling Phenomenological Research Reflexive thematic analysis 1.Unspoken thoughts and difficult experiences Staying safe Conflicting and complex emotionst Wishing for the end with grief and relief Experiences of patient death and end-of-life treatment decisions 2.Coping strategies Commitment to care Life alongside carer role Acceptance of circumstances Self-silencing Information seeking and safety planning Muasher-Kerwin 2025[56] United States To investigate the perspectives of family caregivers of glioblastoma multiforme (GBM) patients, focusing on the barriers and challenges they encounter when providing care. Type of intracranial tumor: Glioblastoma multiforme (GBM) Age range And Gender:Were not reported in the study. Sample Size: N = 19 Age range: 25–78 years, average 56 years; 31.6% in 65–74 age group. Gender:Male(n = 5); Female(n = 14) Relationship to Patient: Wife (n = 10), husband (n = 3), daughter (n = 3), son (n = 1), father (n = 1), sister (n = 1). Recruitment via national GBM organizations and local hospital groups snowball sampling Descriptive qualitative study Thematic Analysis 1. Overwhelming caregiver burden 2. Difficulties coping with the caregiver role 3. Gaps in caregiver support Zanotto 2025[17] United Kingdom,United States To understand the informal caregivers’ lived experiences of coping, support needs, and changes in relationships while caring for a family member or friend with a primary brain tumor. Type of intracranial tumor: Primary brain tumor (low-grade, high-grade, unknown grade; including grade 2, 3, 4 tumors). Age range: 20–82 years Gender:Were not reported in the study. Sample Size: N = 10 Age range: 19–68 years Gender:Male(n = 1); Female(n = 9) Relationship to Patient: Spouses/partners (n = 3), parents (n = 4), adult children (n = 2), sibling (n = 1). Recruitment via social media channels of organizations supporting brain tumor patients and their families. Purposive sampling Interpretative Phenomenological Analysis Thematic Analysis 1. Exhaustion and all-consuming role 2. Experiencing rupture and loss 3. Togetherness and isolation 4. Navigating healthcare and lack of support 5. Anticipating grief Neander 2025[57] Sweden To investigate relatives’ experiences of living close to an adult with low-grade glioma (LGG, grade 2) and explore how the disease impacts daily life and the relationship with the patient over time through repeated interviews. Type of intracranial tumor: Low-grade glioma (grade 2), including astrocytoma II, oligodendroglioma II-III, oligoastrocytoma II; some with no histology data. Age range And Gender:Were not reported in the study. Sample Size: N = 15 Average age: 47 years Gender:Male(n = 6); Female(n = 9) Relationship to Patient: Spouse/partner (n = 11), parents (n = 2), siblings (n = 2) Patients with LGG (diagnosed 2004–2005) participating in a longitudinal study were asked to select relatives for the research. Purposive sampling Descriptive qualitative study Thematic Analysis 1.A scary and mysterious disease 2.A new set of priorities 3.An altered relationship due to a stealthy chang e in the patient 4.A long and lonely road Quality of the included studies Overall, the included studies demonstrated sound methodological quality across multiple key dimensions. All studies clearly stated their research aims and employed qualitative methodologies and appropriate research designs that aligned with their research questions. The data collection processes were consistently reported as appropriate and well-documented, and ethical considerations were explicitly addressed in all studies. Regarding findings and research value, all studies presented their results clearly with supporting evidence and were assessed as contributing value to either practice or the research field.The appraisal also identified areas for potential improvement. Transparency in participant recruitment strategy was insufficiently described in several studies[42,45,46,49,50,52,54]. A number of studies did not adequately discuss the researcher-participant relationship and potential issues of reflexivity (rated as "NO" [42,45,49,54]; rated as "Can't Tell"[47][16,17,44,46–48,53,56]). Additionally, the rigor of the data analysis process was not described in sufficient detail in a few studies[42,44–46]. (Table 3 ). Table 3 Critical appraisal skills programme (CASP) checklist for included articles. Articles 1. Was there a clear statement of the aims of the research? 2. Is a qualitative methodology appropriate? 3. Was the research design appropriate to address the aims of the research? 4. Was the recruitment strategy appropriate to the aims of the research? 5. Was the data collected in a way that addressed the research issue? 6. Has the relationship between researcher and participants been adequately considered? 7. Have ethical issues been taken into consideration? 8. Was the data analysis sufficiently rigorous? 9. Is there a clear statement of findings? 10. Is the research valuable? Schmer etal.(2008)[42] Yes Yes Yes NM Yes NO Yes NM Yes Yes Schubart etal.(2008)[43] Yes Yes Yes Yes Yes NM Yes Yes Yes Yes McConigley etal.(2010)[44] Yes Yes Yes Yes Yes NM Yes NM Yes Yes Tastan etal.(2011)[45] Yes Yes Yes NM Yes NO Yes NM Yes Yes Shortman etal.(2013)[46] Yes Yes NM NM Yes NM Yes NM Yes Yes Collins etal.(2014)[47] Yes Yes Yes Yes Yes NM Yes Yes Yes Yes Coolbrandt etal.(2015)[48] Yes Yes Yes Yes Yes NM Yes Yes Yes Yes Piil etal.(2018)[49] Yes Yes Yes NM Yes NO Yes Yes Yes Yes Francis etal.(2020)[50] Yes Yes Yes NM Yes Yes Yes Yes Yes Yes Kirby etal.(2022)[51] Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Francis etal.(2022)[52] Yes Yes Yes NM Yes Yes Yes Yes Yes Yes Sayal etal.(2023)[53] Yes Yes Yes Yes Yes NM Yes Yes Yes Yes Rimmer etal.(2024)[16] Yes Yes Yes Yes Yes NM Yes Yes Yes Yes Clarke etal.(2024)[54] Yes Yes Yes NM Yes NO Yes Yes Yes Yes McDougall etal.(2025)[55] Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Muasher-Kerwin etal.(2025)[56] Yes Yes Yes Yes Yes NM Yes Yes Yes Yes Zanotto etal.(2025)[17] Yes Yes Yes Yes Yes NM Yes Yes Yes Yes Neander etal.(2025)[57] Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes NM = Not Mentioned Journey Map Construction Journey maps typically consist of a horizontal axis (timeline) and vertical axes (dimensions of activities)[58]. In this study, the horizontal axis represents the various stages and touchpoints in the caregiving journey for intracranial tumor caregivers. The vertical axes were constructed based on the research objectives, encompassing the tasks, emotions, pain points, opportunities, and stakeholders involved in the caregiving journey for intracranial tumor patients. Figure 2 illustrates the full disease-course experience journey of caregivers for patients with intracranial tumors. This map was constructed based on the thematic synthesis results of the 18 included qualitative studies. Through systematic review and inductive analysis, we identified six consecutive stages in the caregiver journey from screening and diagnosis to bereavement and reconstruction: the screening and diagnosis phase, perioperative period, continuation treatment phase, disease progression phase, end-of-life care phase, and the bereavement and reconstruction phase. This stage division closely aligns with the key clinical turning points in the trajectory of intracranial tumors and the evolution of caregiving tasks. Furthermore, this journey map not only provides healthcare professionals with an evidence-based reference that is both broadly applicable and context-specific but also serves as an integrated, structured visual tool. This facilitates the implementation of stage-sensitive assessments and targeted support in clinical practice. Screening and Diagnosis Phase The screening and diagnosis phase marks the initial stage of the caregiver's journey, characterized predominantly by intense emotional upheaval and a high demand for information processing. Upon receiving the diagnosis, caregivers commonly experience shock, fear, and helplessness, often accompanied by recurring questions of "why us" [42,45,46]. Non-empathetic medical communication can exacerbate emotional distress, potentially causing secondary psychological trauma[45,48]. In response to this crisis, caregivers typically engage swiftly in a series of critical tasks: accompanying the patient to medical appointments, organizing medical history, comprehending medical information, seeking second opinions, and undertaking the difficult task of explaining the condition to other family members. During this process, they frequently face ethical dilemmas between "protecting the patient" and "disclosing the full truth" [42,44]. Some caregivers may choose to temporarily withhold the diagnosis from the patient to buffer the emotional impact[42].The core pain points in this phase center on caregivers' often unmet needs for clear diagnostic information, decision-making support, guidance on role transition, and early psychological support[45]. The abrupt role shift and emerging financial pressures intensify their confusion and burden. Feelings of weakened social connections and interrupted future plans are particularly pronounced[43,48].Consequently, key intervention opportunities in this stage lie in the healthcare system proactively providing clear and empathetic diagnostic communication and promptly referring caregivers to psychological support networks and financial aid services. This approach aims to establish a starting point for the long-term caregiving journey that is equipped with resources and emotional support, thereby mitigating the psychosocial risks during this critical period of role transition [42,45]. Perioperative Period The perioperative period signifies a fundamental shift in the caregiver's role identity, transitioning from an auxiliary decision-maker to the primary responsible party undertaking practical caregiving tasks. During this phase, caregivers are required to participate in surgical decision-making, sign informed consent forms, coordinate hospitalization logistics, and begin learning postoperative care knowledge and rehabilitation skills[45,54].Upon first seeing the patient after surgery, caregivers' emotions often oscillate between relief and uneasiness: comforted by the patient's survival yet potentially shocked by changes in their appearance or condition. This moment also marks the beginning of their awareness that the surgery may result in irreversible neurological deficits, triggering anxiety about long-term rehabilitation[45]. In terms of actions, caregivers focus on providing emotional support during hospitalization, assisting with early rehabilitation, advocating for the patient's rights, and maintaining close communication with the medical team[43].The core pain points in this stage lie in the caregivers' common lack of sufficient care-related knowledge and skills, and inadequate information regarding the surgery and postoperative care. They simultaneously endure significant psychological and role-related stress, alongside markedly increased time and financial burdens[43,52].Corresponding support opportunities include: systematically providing caregivers with education and training related to surgery and nursing to enhance their caregiving capacity; offering psychological support to alleviate emotional distress; and tangibly reducing their multifaceted burdens by coordinating in-home assistance, facilitating flexible work arrangements, providing financial subsidies, and maintaining open communication channels with the healthcare team[45,54]. Continuation Treatment Phase The continuation treatment phase signifies the caregiver's entry into a phase of long-term management, characterized by the routinization and increasing complexity of care work. During this stage, the caregiver's core tasks shift towards managing treatment side effects, supervising medication adherence, arranging and accompanying follow-up visits, and striving to adapt to new family roles and divisions of labor while undertaking substantial daily care[44,50].Caregiver behavior manifests as a multi-layered coping system: systematically managing daily affairs such as transportation, meals, and work at the life-management level; directly handling disease- or treatment-induced behavioral and cognitive changes at the clinical-coping level; and actively seeking and integrating external support at the resource-coordination level. Notably, to maintain the stability of the care system, caregivers frequently suppress their own emotions, which has become a significant psychological and behavioral characteristic[44,48].Prolonged stress and role burden trigger distinct emotional responses, including fatigue stemming from physical and mental exhaustion, loneliness due to reduced social interaction and a lack of understanding, and the alternating feelings of hope and frustration amidst fluctuating clinical conditions, often accompanied by guilt and self-doubt[16,48].These challenges reflect the core pain points of this stage: caregivers commonly experience insufficient caregiving capacity, particularly in managing neurocognitive and behavioral symptoms[47]; their social support networks are weak, and their own health is severely neglected[50]; furthermore, persistent financial and occupational pressures constitute a significant real-world burden[43].Corresponding support opportunities include: constructing a professionalized support system, such as developing individualized care plans and forming multidisciplinary teams[54]; providing substantive assistance like respite care, household help, and financial and workplace support; establishing an ongoing psychological support network through means such as support groups; and actively guiding and encouraging caregivers to engage in necessary self-care[50,53]. Disease Progression Phase The disease progression period represents a challenging transitional stage in the caregiver's journey, characterized by significant deterioration in the patient's condition and a fundamental shift in caregiving goals. During this phase, the caregiver's tasks become exceptionally burdensome and complex, primarily involving participation in palliative care decision-making, closely monitoring and managing symptom exacerbations, promptly adjusting care plans, and coordinating multidisciplinary medical and care resources[51,54].Caregivers face markedly increased intensity and complexity in care provision. They must not only respond to rapidly evolving clinical changes but also strive to manage more challenging neurobehavioral symptoms, such as aggressive behaviors, which may even lead caregivers to feel as though they are in a "domestic violence relationship"[55]. This series of challenges triggers profound and complex emotional responses: pervasive grief and despair, fear and anxiety about the patient's impending death, and, due to prolonged high stress, physical and emotional exhaustion. Caregivers may develop thoughts wishing for the patient's "early release," which conflict with their ethical role, causing intense emotional self-reproach and placing their emotions in a state of contradiction and conflict during this phase[47,55]. The cumulative physical and psychological burden on caregivers gradually peaks in this stage, manifesting in significant somatic symptoms[49].The core pain points of this stage are concentrated in the following areas: the economic burden stemming from long-term care further diminishes the caregiver's coping capacity[54]; a lack of systematic and continuous psychological support resources exacerbates emotional exhaustion[49]; and caregivers endure immense physical and psychological pressure at critical medical decision-making junctures, such as palliative care transitions[56].Corresponding support opportunities should include: promoting early palliative care intervention to optimize symptom management and care goals[47]; providing caregivers with continuous psychological support and necessary financial assistance[53]; and enhancing the role of care coordinators to systematically alleviate the burden of care management for caregivers[54]. End-of-Life Care Phase The end-of-life care phase marks a fundamental transformation in the caregiver's role, with the core objective shifting from a treatment-centric focus on prolonging life to a patient-centric commitment to ensuring comfort and dignity during the final stage of life. In this terminal phase, the caregiver's central tasks concentrate on providing comprehensive comfort care, making difficult decisions regarding the limits of treatment, and offering continuous presence and support through the final farewells[49,54].Specific behaviors include delivering close bedside care, facilitating crucial conversations—such as assisting the patient in expressing final wishes or completing advance care planning documents through guided communication—, communicating with the medical team to discontinue aggressive interventions, coordinating various hospice services, and potentially seeking spiritual support or arranging religious rituals to provide solace for both the patient and the caregiver[46,51].This process is accompanied by an exceptionally complex wave of emotions: intense sorrow and grief form the predominant tone, interwoven with guilt over decisions made, and a sense of relief at the end of suffering following prolonged exhaustion[49,51].The core pain points of this stage lie in the immense decisional pressure concerning critical issues such as life support[55] and the dual emotional burden caregivers must shoulder—managing their own profound grief while also navigating additional strains arising from family dynamics[49].Corresponding support opportunities should focus on providing systematic humane care, including the early introduction of professional hospice services[49]; offering clear guidance on end-of-life decision-making and sustained psychological support for caregivers[54]; providing spiritual care; and proactively initiating bereavement support to prepare caregivers for a smoother transition into the subsequent phase of loss[53]. Bereavement and Reconstruction Phase The bereavement and reconstruction period signifies the prolonged process through which the caregiver, following the patient's death, transitions from the role of caregiver to that of a mourner and ultimately attempts to reintegrate into social life. The core tasks of this stage include processing and integrating complex grief, arranging funerals and posthumous matters, replanning personal life in the reality of loss, and actively seeking necessary psychological and social support [49,53].The death of the loved one signifies that the anticipatory grief long carried by the bereaved person materializes from a state of suspended psychological preparation into the lived experience of loss and an ongoing mourning process[17]. The mourning of the bereaved exhibits a composite structure: their grief is directed not only towards the deceased loved one but also extends to the loss of their own social identity attached to that relationship, such as being a spouse or parent, and the shared life vision that was co-constructed within that relationship but vanished with the disease progression [50,55].Their behaviors show a progressive shift from mourning to reconstruction, typically including participation in farewell rituals, sorting through belongings to process emotional attachments, seeking psychological counseling or joining bereavement support groups to channel emotions, and gradually resuming social and occupational activities to rebuild life order and achieve financial autonomy [46,51,53].This stage is accompanied by contradictory and dynamic emotional changes: initial intense sorrow and longing are often followed by feelings of relief and release due to the lifting of caregiving pressures, which may then give way to loneliness and identity crisis stemming from the sudden void in life[17,49]. Finally, through gradual adjustment, some individuals may begin to rediscover hope for the future, experiencing a sense of "rebirth"[46,51].The core pain points of this stage lie in the general lack of systematic grief support systems within society, leading to unaddressed emotional trauma for many[53]. Individuals who have lost their caregiving role face severe challenges in life reconstruction and identity crisis, which to some extent exacerbates social isolation[17]. Furthermore, the financial pressures accumulated from long-term treatment and care during the patient's life often persist after their death in forms such as outstanding debts, further intensifying the difficulties faced during this transitional phase[49].Therefore, key support opportunities involve building a continuous support system, including providing professional grief counseling and bereavement support groups[53]; assisting in developing personalized life reconstruction plans and offering re-employment guidance to facilitate social reintegration[49]; encouraging the participation of the bereaved in community activities to rebuild social connections and mitigate isolation; and ensuring the accessibility of long-term, professional psychological services for the early identification and intervention of potential prolonged grief disorder[17]. Discussion Construction of the Intracranial Tumor Caregiver Journey Map and its Implications for the Support System This study innovatively constructed a comprehensive and coherent journey map for family caregivers of patients with intracranial tumors through the systematic synthesis of qualitative evidence. Distinct from previous research that often focused on isolated stages or single dimensions[59], this map clearly demonstrates that caregiver experience constitutes an integrated trajectory profoundly intertwined with the medical progression of the disease, characterized by an inherent stage-wise regularity and dynamic evolution. The delineated stages—from the screening and diagnosis phase, perioperative period, continuation treatment phase, disease progression phase, and end-of-life care phase to the bereavement and reconstruction phase—are not merely a simple chronological sequence. Instead, they are demarcated based on critical transition points where the caregiver's core tasks, dominant emotions, and support needs undergo fundamental shifts.Furthermore, the journey map reveals the strong dynamism and non-linear nature of this trajectory. The caregiver's experience does not represent a unidirectional, smooth transition but rather involves recurrences and overlappings of challenges and emotions. The construction of this journey map acknowledges the uniqueness of each stage, thereby providing targeted objectives for stage-specific, precise support interventions. Simultaneously, it emphasizes the interconnectedness and evolution between stages, suggesting that the support system should possess sufficient flexibility and continuity to respond to the inherent uncertainties in the caregiver's journey.This journey map transforms fragmented qualitative insights into an orderly navigational chart. It enables healthcare professionals, policymakers, and caregivers themselves to shift from a mode of reactive coping to one of proactive planning, representing a crucial step towards establishing a caregiver-centered support system.Moreover, this study transcends limitations related to specific age groups or caregiver roles. Compared to the research by Rolfe et al. (2025) [60], which focused on a narrower caregiver demographic (e.g., parents), the present study encompasses a broader range of caregivers, including those in various family and social roles. This broader scope allows for a more comprehensive reflection of both the commonalities and differences in caregiver experiences across different disease stages, patient ages, family structures, and cultural backgrounds, thereby advancing the development of personalized, whole-cycle care systems. Journey Map-Oriented Nursing Practice: The Role Positioning and Support Pathways of Nurses in Whole-Course Care Based on the constructed intracranial tumor caregiver journey map, this study identifies key support opportunities at each stage, which provide clear intervention directions for nursing practice. As core members of the care team, nurses play a pivotal role throughout the caregiver's journey. They must fulfill diverse and continuous professional responsibilities tailored to the characteristics and needs of different stages, thereby facilitating a paradigm shift from reactive response to proactive support. During the screening and diagnosis phase, caregivers face information overload and emotional shock. The core responsibility of nurses at this stage is to provide emotional support and serve as an information bridge for caregivers. A specialized nurse coordinator, who possesses extensive experience in oncology nursing and has received targeted communication skills training, should establish a trusting relationship with the caregivers of patients with intracranial tumors[61]. This coordinator would undertake key communication tasks, assess caregiver needs and coping strategies, and provide emotional support. A three-arm randomized controlled trial (RCT) led by Boele et al. [62] demonstrated that a nurse-led emotional support model significantly alleviates psychological distress in these caregivers. Simultaneously, acting as a bidirectional communication bridge, the coordinator can accurately and timely convey the concerns and demands of patients and their families to the healthcare team. This ensures the holistic coordination of subsequent treatment and follow-up, maintaining synchronized information flow. When caregivers enter the critical transitional perioperative period, it signifies that they begin undertaking specific and demanding caregiving tasks. At this stage, the core responsibility of nurses is to act as educators and enablers, providing essential surgical knowledge and skill support, guiding caregivers to effectively fulfill their roles, and thereby enabling their more active participation in the rehabilitation process. Nurses should offer structured perioperative education to caregivers, covering key topics such as surgical procedures, preoperative skin preparation, postoperative wound care, pain management, and complication recognition[63]. Through systematic training, this approach tangibly enhances caregivers' caregiving competency and confidence, which can effectively reduce patient hospital stays and minimize complication rates, consequently alleviating the caregiving burden. Upon entering the continuation treatment phase, caregiving work becomes increasingly routinized yet highly complex. In this stage, the nurse's role expands to that of a long-term manager and support coordinator. On one hand, nurses can provide educational programs for caregivers of patients with intracranial tumors, covering topics such as managing disease-specific symptoms (e.g., tumor-related epilepsy) and strategies for addressing cognitive changes[64]. On the other hand, nurses can proactively assume the role of coordinator for the caregiver support network. This involves assisting in organizing peer support activities for caregivers[65], facilitating experience sharing and emotional mutual aid to alleviate their sense of isolation.Simultaneously, nurses should integrate the caregiver's own health status into routine assessment and intervention protocols. By utilizing approaches such as psychoeducation, mindfulness-based interventions, and cognitive-behavioral therapy-based strategies to enhance caregiver resilience[66], they can systematically safeguard the overall well-being of caregivers, thereby effectively preventing the deterioration of their physical and mental health. When the patient's condition enters the disease progression phase, its core feature is the definitive deterioration of the disease state. As a transition between continuation treatment and palliative care, caregivers often face a heavy care burden and decisional dilemmas due to a lack of understanding and psychological preparedness for the trajectory of disease worsening[67]. In this stage, the nurse's role further expands and deepens. Building upon enhancing caregiver resilience, the nurse also acts as a facilitator for Advance Care Planning (ACP) and decisional support. This involves assisting patients, families, and the healthcare team in communicating about treatment goals and the impending transition to an end-of-life state, thereby promoting the discussion and implementation of hospice and palliative care plans[68]. During the end-of-life care phase, due to impaired decision-making capacity resulting from neurocognitive deficits, the goal of terminal care shifts to enhancing the quality of a dignified death for the patient. The key lies in improving caregivers' satisfaction with the care process and avoiding unnecessary transitions in the care setting, thereby ensuring the continuity and stability of hospice and palliative care[69]. In this phase, the core role of nurses transforms into that of practitioners of comfort care and providers of humane support. A crucial responsibility is to actively collaborate with caregivers to clarify care goals and treatment preferences based on the values held by both the patient with an intracranial tumor and their caregiver, in order to develop a personalized hospice care plan[70]. Furthermore, assisting families in implementing Advance Care Planning (ACP) programs during the end-of-life phase[71] helps deliver targeted nursing care aligned with caregivers' needs, thereby reducing hospitalization rates and avoiding unnecessary aggressive interventions at the end of life. Finally, in the bereavement and reconstruction phase, the nurse's role transforms into that of a grief companion and facilitator of social reintegration. Nursing support does not terminate with the patient's death. Nurses can conduct ongoing follow-ups through various means such as phone calls and letters[72]to assess the bereaved individual's grief response. They can utilize self-report tools for standardized risk screening to identify caregivers experiencing prolonged or complicated grief disorder[73], providing initial grief counseling or referring them to professional psychological services or support groups[74]. Furthermore, nurses can offer telehealth support services to provide information and guidance on life reconstruction for caregivers of patients with intracranial tumors[75]. They can encourage the gradual resumption of social activities, the rebuilding of social networks, and the search for new life meaning and identity[76], thereby facilitating a smooth transition out of the caregiver role. The caregiving journey for individuals with intracranial tumors is fraught with challenges and is inherently dynamic. Nurses should establish a core philosophy of whole-course management in their practice. Guided by the journey map, they must flexibly assume multiple roles across different stages—such as educator, coordinator, manager, advocate, carer, and companion. By providing continuous, proactive, professional, and humanistic support, nurses can effectively empower caregivers and help construct a family-centered, integrated care support system throughout the entire trajectory. This is not only crucial for enhancing caregiver well-being but also represents a vital component in achieving high-quality, comprehensive management of intracranial tumors. Building a Dynamic and Precision Support System: A Clinical Intervention Framework and Practical Translation Based on the Journey Map The journey map constructed in this study goes beyond systematically identifying the burdens and challenges faced by caregivers throughout the entire trajectory[77]; it also represents a paradigm shift from problem description to framework construction. By employing the journey map as a structural framework, it integrates key junctures in neuro-oncological diagnosis and treatment. The core principles are whole-course coverage, precision intervention, and dynamic adjustment.At stages including the screening and diagnosis phase, perioperative period, continuation treatment phase, disease progression phase, and bereavement and reconstruction phase, standardized tools should be used to proactively assess caregivers' level of information comprehension and social support status[78], implementing a model of proactive and preventive care rather than reactive care. By measuring the supportive care needs of caregivers for patients with intracranial tumors at each stage of the journey[79,80], telehealth platforms[81] can be leveraged to precisely deliver personalized information and skill guidance, ensuring the accessibility of specialized services.Furthermore, integrating caregiver mental health—a significant public health concern—into the clinical care pathway is a crucial step[82]. This involves conducting psychological screening at different stages[83] to assess the degree of caregiver psychological distress[84], and establishing a stepped-care intervention model. This model ranges from mental health education and structured peer support groups to providing professional psychological counseling for caregivers experiencing severe distress.Actively promoting a multidisciplinary service and care model that includes clinicians, neuro-oncology specialist nurses, psychologists, general practitioners, and others[85] is essential. Establishing electronic health records for patients and their caregivers to document their personalized needs, actively linking medical, community, and charitable resources, and formulating individualized support plans are recommended. These measures ensure information continuity and care coordination across different healthcare institutions and community services, providing caregivers with a sustainable mechanism of support. Based on the integrated support framework derived from the journey map, previously fragmented and reactive services are reconfigured into a proactive, dynamic, and multidimensional continuum of support. This enables intervention measures not only to be precisely targeted at specific stages of the caregiver's journey but also to achieve macro-level dynamic calibration. Consequently, it offers a valuable reference for implementing a family-centered care model in clinical practice. 5.4 Directions for Healthcare Policy and Educational System Reform The caregiver journey map constructed in this study and the core challenges it reveals go beyond a mere description of phenomena; they also provide a reference point for reforming healthcare service systems and educational directions. While undertaking arduous caregiving tasks, the health and well-being needs of caregivers for patients with intracranial tumors often lack systematic attention and support within the healthcare system. Therefore, targeted reforms at the policy and educational levels are urgently needed.For diseases such as intracranial tumors, characterized by a long course, prominent neuropsychiatric symptoms, and complex decision-making, caregivers are not only assistants in daily living but also crucial participants in medical decisions and close observers of symptoms. Consequently, at the healthcare policy level, it is necessary to promote a shift from a patient-centered care model[86] towards a care model that encompasses caregivers[87]. Health systems should actively foster a diversified research funding landscape involving governments, markets, international organizations, and civil society institutions, providing financial support, expanding insurance coverage, or establishing special funds for assistance[88]. This would alleviate the economic burden on families and ensure the sustainability of support services.Simultaneously, efforts should be made to establish cross-sectoral collaborative networks that integrate resources from healthcare, rehabilitation, social security, civil affairs, and community organizations. This would provide "one-stop" services for families affected by intracranial tumors, with care coordinators responsible for service linkage and needs follow-up.At the educational level, governments need to allocate dedicated funding and incentives to incorporate knowledge and skills for identifying and supporting caregivers into the core curriculum and continuing professional development for healthcare professionals. This includes strengthening training on family care for chronic critical illnesses, effective communication with caregivers, and cultivating awareness and competence among future healthcare professionals to adopt a care model inclusive of caregivers. The goal is to fundamentally recognize caregivers as indispensable partners within the healthcare team. In summary, translating the insights from the journey map into tangible action necessitates a move in clinical practice towards greater refinement and pathway development. More critically, it requires a systemic and supportive restructuring of both policy and educational systems. Through this dual-track advancement—integrating clinical and policy initiatives—we can work to change the predicament faced by caregivers of patients with intracranial tumors and build a healthcare and social care system capable of providing sustainable support and enhancing their resilience. Limitations of this study This study has several limitations. First, the literature search was confined to English-language databases and did not include studies published in other languages. This may introduce language and cultural bias, potentially limiting the cross-cultural applicability and generalizability of the journey map's conclusions. Second, the integrated qualitative evidence inherently possesses subjectivity. Although a systematic thematic synthesis approach and multi-researcher verification were employed, the interpretation of data and the distillation of themes may still be influenced by the researchers' standpoints and interpretive perspectives.Third, intracranial tumors are highly heterogeneous in terms of pathological type, malignancy grade, rate of disease progression, and patterns of neurological impairment. The journey map constructed in this study does not fully account for this internal heterogeneity. The included studies predominantly focused on malignant tumors, and different tumor types may lead to significant variations in caregiver experiences. Therefore, the applicability of the current map to specific intracranial tumor populations requires further validation.Fourth, there is a degree of bias in the caregiver sample structure across the included studies. Most studies predominantly involved spousal caregivers, with other perspectives being relatively underrepresented. This may result in an incomplete coverage of caregiving experiences across different family roles and social relationships.Fifth, the majority of the original studies employed a cross-sectional design, lacking longitudinal follow-up of the same caregiver cohort over time. Consequently, the stage delineation and dynamic evolution pathways within the journey map are primarily derived from the synthesis of cross-sectional evidence. The temporal continuity and authenticity of this trajectory need to be confirmed by future longitudinal studies.Finally, this study is currently at the stage of theoretical framework construction. The proposed journey map has not yet been empirically applied or its effectiveness evaluated in clinical settings. Its feasibility as a nursing practice tool, its effectiveness, and its actual impact on improving caregiver outcomes require verification through subsequent interventional research. Conclusion This study, through the systematic synthesis of existing qualitative evidence, constructed a six-stage journey map for caregivers of patients with intracranial tumors. It systematically reveals the core tasks, emotional trajectories, key challenges, and support opportunities throughout the entire process from diagnosis to bereavement. This map not only provides a holistic and dynamic framework for understanding caregiver experiences but also offers an empirical foundation for clinically implementing stage-specific supportive needs assessments and multidisciplinary collaboration, delivering targeted support interventions, and optimizing continuous care services. Simultaneously, it provides insights for policymaking, the development of medical professional education, and future research. Future work is needed to validate and adapt this map across diverse cultural contexts, to develop and evaluate corresponding interventions based on it, and to promote the establishment of a care model that fully integrates caregivers. The ultimate goal is to enhance the overall quality of care and the well-being of both patients with intracranial tumors and their families. Declarations Ethics approval and consent to participate Not applicable. Clinical trial number Not applicable. Consent for publication Not applicable. Availability of data and materials Not applicable. Competing interests The authors declare no competing interests. Funding Not applicable. Authors' contributions FN: Conceptualization; Data curation; Formal analysis; Methodology; Project administration; Software; Supervision; Validation; Visualization; Roles/Writing - original draft.YL: Project administration; Resources; Software; Supervision.XTZ: Project administration; Resources; Software; Supervision.HS: Screening and extract the document.JNF: Screening and extract the document.APW: Conceptualization; review & editing.All authors are involved in drafting the manuscript or revising it critically for important intellectual content and agreed on the final version. Acknowledgements Not applicable. References Miller KD, Ostrom QT, Kruchko C, Patil N, Tihan T, Cioffi G, et al. Brain and other central nervous system tumor statistics, 2021. CA Cancer J Clin 2021;71:381–406. https://doi.org/10.3322/caac.21693. M P, Cap B, Jr B, C K, Js B-S, Qt O. CBTRUS Statistical Report: Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2018-2022. Neuro-Oncology 2025;27. https://doi.org/10.1093/neuonc/noaf194. Zhou J, Gu L, Du F, Li C, Zhang F, Zhang X, et al. The global, regional, and national brain and CNS cancers burden and trends from 1990 to 2021. Sci Rep 2025;15:19228. https://doi.org/10.1038/s41598-025-04636-7. Philip J, Collins A, Panozzo S, Staker J, Murphy M. Mapping the nature of distress raised by patients with high-grade glioma and their family caregivers: a descriptive longitudinal study. Neuro-Oncol Pract 2020;7:103–10. https://doi.org/10.1093/nop/npz032. Zamanipoor Najafabadi AH, van der Meer PB, Boele FW, Taphoorn MJB, Klein M, Peerdeman SM, et al. Long-Term Disease Burden and Survivorship Issues After Surgery and Radiotherapy of Intracranial Meningioma Patients. Neurosurgery 2020;88:155–64. https://doi.org/10.1093/neuros/nyaa351. Lion KM, Jamieson A, Billin A, Jones S, Pinkham MB, Ownsworth T. “It was never about me”: A qualitative inquiry into the experiences of psychological support and perceived support needs of family caregivers of people with high-grade glioma. Palliat Med 2024;38:874–83. https://doi.org/10.1177/02692163241261211. Liu H, Ju M, Wu L, Wu C. Role Transition Experiences in Family Caregivers of Glioma Patients: A Meta-Synthesis of Qualitative Research. Psychooncology 2025;34:e70301. https://doi.org/10.1002/pon.70301. Chen D, Zhu J, Xu Q, Wang F, Ji C, Di H, et al. The role of informal caregivers for patients with glioma: a systematic review and meta-synthesis of qualitative studies. Ann Transl Med 2021;9:1020–1020. https://doi.org/10.21037/atm-21-2761. Sakurada K, Sato I, Ikeda M, Narita Y. Mental health status and associated factors of caregivers of patients with malignant brain tumors. J Neurooncol 2025;173:71–82. https://doi.org/10.1007/s11060-025-04963-9. Bayen E, Laigle-Donadey F, Prouté M, Hoang-Xuan K, Joël M-E, Delattre J-Y. The multidimensional burden of informal caregivers in primary malignant brain tumor. Support Care Cancer 2017;25:245–53. https://doi.org/10.1007/s00520-016-3397-6. Chen D, Zhu J, Xu Q, Wang F, Ji C, Di H, et al. The role of informal caregivers for patients with glioma: a systematic review and meta-synthesis of qualitative studies. Ann Transl Med 2021;9:1020–1020. https://doi.org/10.21037/atm-21-2761. Karger A, Kisić A, Quente C, Klett MK, Schäfer R, Sabel M, et al. Longitudinal Psychological Distress After Malignant Brain Tumor Diagnosis: A Multilevel Analysis of Patients and Their Caregivers. Psychooncology 2025;34:e70064. https://doi.org/10.1002/pon.70064. Chen H, Zou T, Teng Z, Qin Y, Deng Y, Wu R, et al. A systematic review and meta-analysis of psychological burden in family caregivers of patients with brain tumors. Sci Rep 2025;15:39694. https://doi.org/10.1038/s41598-025-23331-1. Zamanipoor Najafabadi AH, Van Der Meer PB, Boele FW, Taphoorn MJB, Klein M, Peerdeman SM, et al. The long-term caregiver burden in World Health Organization grade I and II meningioma: It is not just the patient. Neuro-Oncol Adv 2021;3:vdaa169. https://doi.org/10.1093/noajnl/vdaa169. Forst DA, Podgurski AF, Quain KM, Landay SL, Anand M, Kaslow-Zieve E, et al. Factors associated with psychological distress in caregivers of patients with malignant gliomas. Support Care Cancer 2022;30:5811–20. https://doi.org/10.1007/s00520-022-06989-5. Rimmer B, Balla M, Dutton L, Lewis J, Burns R, Gallagher P, et al. “A Constant Black Cloud”: The Emotional Impact of Informal Caregiving for Someone With a Lower-Grade Glioma. Qual Health Res 2024;34:227–38. https://doi.org/10.1177/10497323231204740. Zanotto A, McVittie C, Goodall K, Ellison M. “It Is Kind of Invisible Work”: Lived Experiences of Informal Caregivers of People with a Brain Tumor. Semin Oncol Nurs 2025;41:151938. https://doi.org/10.1016/j.soncn.2025.151938. Paterson C, Roberts C, Li J, Chapman M, Strickland K, Johnston N, et al. What are the experiences of supportive care in people affected by brain cancer and their informal caregivers: A qualitative systematic review. J Cancer Surviv 2024;18:1608–29. https://doi.org/10.1007/s11764-023-01401-5. Ownsworth T, Goadby E, Chambers SK. Support after brain tumor means different things: family caregivers’ experiences of support and relationship changes. Front Oncol 2015;5:33. https://doi.org/10.3389/fonc.2015.00033. Young K, Cashion C, Hassall T, Ekberg S, Bradford N. Supporting families through paediatric brain tumour: Unmet needs and suggestions for change. Psychooncology 2023;32:942–50. https://doi.org/10.1002/pon.6136. Hertler C, Eisele G, Gramatzki D, Seystahl K, Wolpert F, Roth P, et al. End-of-life care for glioma patients; the caregivers’ perspective. J Neurooncol 2020;147:663–9. https://doi.org/10.1007/s11060-020-03471-2. Koekkoek JAF, Van Der Meer PB, Pace A, Hertler C, Harrison R, Leeper HE, et al. Palliative care and end-of-life care in adults with malignant brain tumors. Neuro-Oncol 2023;25:447–56. https://doi.org/10.1093/neuonc/noac216. Forst DA, Podgurski AF, Strander SM, Whitman JD, Datta S, Pintro K, et al. NeuroCARE: A Randomized Controlled Trial of a Psychological Intervention for Caregivers of Patients With Primary Malignant Brain Tumors. J Clin Oncol 2024;42:4252–62. https://doi.org/10.1200/JCO.24.00065. Ciria-Suarez L, Jiménez-Fonseca P, Palacín-Lois M, Antoñanzas-Basa M, Fernández-Montes A, Manzano-Fernández A, et al. Breast cancer patient experiences through a journey map: A qualitative study. PLOS One 2021;16:e0257680. https://doi.org/10.1371/journal.pone.0257680. Yao Y, He T, Tian X. The Experience of Patients with Endocrine Therapy for Breast Cancer: A Patient Journey Map Based on Qualitative Research. Curr Oncol 2024;31:5873–88. https://doi.org/10.3390/curroncol31100437. O’Regan D, Garcia-Borreguero D, Gloggner F, Wild I, Leontiou C, Ferini-Strambi L. Mapping the insomnia patient journey in Europe and Canada. Front Public Health 2023;11:1233201. https://doi.org/10.3389/fpubh.2023.1233201. Saragosa M, Frew M, Hahn-Goldberg S, Orchanian-Cheff A, Abrams H, Okrainec K. The Young Carers’ Journey: A Systematic Review and Meta Ethnography. Int J Environ Res Public Health 2022;19:5826. https://doi.org/10.3390/ijerph19105826. Hu J, Dong G, Liu D, Wang D. A longitudinal qualitative study on the care needs journey map of primary caregivers of patients undergoing total knee arthroplasty. Front Rehabil Sci 2025;6:1623623. https://doi.org/10.3389/fresc.2025.1623623. Lv Y, Li Q, Wu J, Zhang X, Gu R, Pan Y, et al. Mapping the health management journey of women with gestational diabetes mellitus: a qualitative study. BMC Pregnancy Childbirth 2025;25:1239. https://doi.org/10.1186/s12884-025-08409-y. Hagendijk ME, Zipfel N, Oomen FJ, Hoving JL, Van Der Wees PJ, Hulshof CTJ, et al. Work-focused healthcare from the perspective of employees living with cardiovascular disease: a patient experience journey mapping study. BMC Public Health 2023;23:1765. https://doi.org/10.1186/s12889-023-16486-x. Shafei I, Karnon J, Crotty M. Process mining and customer journey mapping in healthcare: Enhancing patient-centred care in stroke rehabilitation. DIGIT HEALTH 2024;10:20552076241249264. https://doi.org/10.1177/20552076241249264. Vesinurm M, Dünweber C, Rimestad J, Landtblom A, Jennum PJ. Patient experiences of narcolepsy and idiopathic hypersomnia in the Nordics: a patient journey map. J Sleep Res 2025;34:e14376. https://doi.org/10.1111/jsr.14376. Benz C, Scott‐Jeffs W, Revitt J, Brabon C, Fermanis C, Hawkes M, et al. Co‐designing a telepractice journey map with disability customers and clinicians: Partnering with users to understand challenges from their perspective. Health Expect 2024;27:e13919. https://doi.org/10.1111/hex.13919. He Q, Du F, Simonse LWL. A Patient Journey Map to Improve the Home Isolation Experience of Persons With Mild COVID-19: Design Research for Service Touchpoints of Artificial Intelligence in eHealth. JMIR Med Inform 2021;9:e23238. https://doi.org/10.2196/23238. Hu J, Dong G, Liu D, Wang D. A longitudinal qualitative study on the care needs journey map of primary caregivers of patients undergoing total knee arthroplasty. Front Rehabil Sci 2025;6:1623623. https://doi.org/10.3389/fresc.2025.1623623. Zhang Z, Yang L, Cao H, Li F. The support provision and self-support journey of partners in high-risk pregnancies with comorbidities: A meta-synthesis analysis. Midwifery 2025;148:104463. https://doi.org/10.1016/j.midw.2025.104463. Tong A, Flemming K, McInnes E, Oliver S, Craig J. Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol 2012;12:181. https://doi.org/10.1186/1471-2288-12-181. Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021:n71. https://doi.org/10.1136/bmj.n71. Amir-Behghadami M, Janati A. Population, Intervention, Comparison, Outcomes and Study (PICOS) design as a framework to formulate eligibility criteria in systematic reviews. Emerg Med J 2020;37:387–387. https://doi.org/10.1136/emermed-2020-209567. Nadelson S, Nadelson LS. Evidence‐Based Practice Article Reviews Using CASP Tools: A Method for Teaching EBP. Worldviews Evid Based Nurs 2014;11:344–6. https://doi.org/10.1111/wvn.12059. Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 2008;8:45. https://doi.org/10.1186/1471-2288-8-45. Schmer C, Ward-Smith P, Latham S, Salacz M. When a family member has a malignant brain tumor: the caregiver perspective. J Neurosci Nurs 2008;40:78–84. https://doi.org/10.1097/01376517-200804000-00006. Schubart JR, Kinzie MB, Farace E. Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro-Oncol 2008;10:61–72. https://doi.org/10.1215/15228517-2007-040. McConigley R, Halkett G, Lobb E, Nowak A. Caring for someone with high-grade glioma: a time of rapid change for caregivers. Palliat Med 2010;24:473–9. https://doi.org/10.1177/0269216309360118. Tastan S, Kose G, Iyigun E, Ayhan H, Coskun H, Hatipoglu S. Experiences of the relatives of patients undergoing cranial surgery for a brain tumor: a descriptive qualitative study. J Neurosci Nurs 2011;43:77–84. https://doi.org/10.1097/jnn.0b013e31820c94da. Shortman RI, Beringer A, Penn A, Malson H, Lowis SP, Sharples PM. The experience of mothers caring for a child with a brain tumour. Child Care Health Dev 2013;39:743–9. https://doi.org/10.1111/cch.12005. Collins A, Lethborg C, Brand C, Gold M, Moore G, Sundararajan V, et al. The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practices. BMJ Support Palliat Care 2014;4:68–76. https://doi.org/10.1136/bmjspcare-2012-000419. Coolbrandt A, Sterckx W, Clement P, Borgenon S, Decruyenaere M, De Vleeschouwer S, et al. Family Caregivers of Patients With a High-Grade Glioma: A Qualitative Study of Their Lived Experience and Needs Related to Professional Care. Cancer Nurs 2015;38:406–13. https://doi.org/10.1097/NCC.0000000000000216. Piil K, Jarden M. Bereaved Caregivers to Patients With High-Grade Glioma: A Qualitative Explorative Study. J Neurosci Nurs 2018;50:94–9. https://doi.org/10.1097/JNN.0000000000000348. Francis SR, Hall EO, Delmar C. Ethical dilemmas experienced by spouses of a partner with brain tumour. Nurs Ethics 2020;27:587–97. https://doi.org/10.1177/0969733019857790. Kirby E, van Toorn G, Lwin Z. Routines of isolation? A qualitative study of informal caregiving in the context of glioma in Australia. Health Soc Care Community 2022;30:1924–32. https://doi.org/10.1111/hsc.13571. Francis SR, Hall EOC, Delmar C. Spouse Caregivers’ Experiences of Suffering in Relation to Care for a Partner With Brain Tumor: A Qualitative Study. Cancer Nurs 2022;45:E320–8. https://doi.org/10.1097/NCC.0000000000000935. Sayal P, Rizakos S, Lam E, Constantin J, Diskin C, Bartels U, et al. A qualitative exploration of parental caregivers’ experience caring for children who have survived medulloblastoma. Pediatr Blood Cancer 2023;70:e30534. https://doi.org/10.1002/pbc.30534. Clarke JJ, Halkett GKB, McDougall E, Dhillon HM, Lobb E, Phillips JL, et al. What do carers of people with high-grade glioma perceive could improve their preparedness to care, and what additional support do they require? Neuro-Oncology Practice 2024;11:296–306. https://doi.org/10.1093/nop/npae015. McDougall E, Nordentoft S, Kjærgaard S, Halkett GKB, Nowak AK, Dhillon HM, et al. Unveiling the Unspoken: Exploring Taboo Thoughts and Difficult Experiences Among Carers of People With Brain Cancer. Psychooncology 2025;34:e70231. https://doi.org/10.1002/pon.70231. Muasher-Kerwin C, Baumbach A, Liu Y, Hughes MC. “You sure feel like you’re alone, kind of flailing away out there”: Family caregiver perspectives of caring for an individual with glioblastoma multiforme. Palliat Support Care 2025;23:e62. https://doi.org/10.1017/S147895152500015X. Neander K, Elwin M, Ek L. A long and lonely road: Relatives’ experiences of living with a person diagnosed with low-grade glioma. Neuropsychol Rehabil 2026;36:61–83. https://doi.org/10.1080/09602011.2025.2490151. Davies EL, Bulto LN, Walsh A, Pollock D, Langton VM, Laing RE, et al. Reporting and conducting patient journey mapping research in healthcare: A scoping review. J Adv Nurs 2023;79:83–100. https://doi.org/10.1111/jan.15479. Meer S, Buckle P, Miller R, Murray L, Ziegler L, Piil K, et al. End-of-life care experiences and long-term outcomes of bereaved neuro-oncology caregivers: A cross-sectional survey. Palliat Med 2025;39:814–26. https://doi.org/10.1177/02692163251344164. Rolfe ML, Miller E, Donkin L, Ekberg S, Bradford NK. “Still in Survival Mode”: Trauma-Mapping Parent Experiences of Pediatric Brain Tumor. Qual Health Res 2025:10497323251378297. https://doi.org/10.1177/10497323251378297. Philip J, Collins A, Staker J, Murphy M. I-CoPE: A pilot study of structured supportive care delivery to people with newly diagnosed high-grade glioma and their carers. Neuro-Oncol Pract 2019;6:61–70. https://doi.org/10.1093/nop/npy010. Boele FW, Weimer JM, Marsland AL, Armstrong TS, Given CW, Drappatz J, et al. The effects of SmartCare© on neuro-oncology family caregivers’ distress: a randomized controlled trial. Support Care Cancer 2022;30:2059–68. https://doi.org/10.1007/s00520-021-06555-5. Yang Y, Fu J, Fu Y, Fu J. Factors influencing caregiver burden during perioperative care for children with pediatric central nervous system tumors: an analysis of multidimensional burden and associated determinants. Front Pediatr 2025;13:1607200. https://doi.org/10.3389/fped.2025.1607200. Jones D, Pinkham MB, Wallen MP, Hart NH, Joseph R, Strodl E, et al. Benefits of supportive strategies for carers of people with high-grade glioma: a systematic review: Strategies for addressing the needs of high-grade glioma carers. Support Care Cancer 2022;30:10359–78. https://doi.org/10.1007/s00520-022-07419-2. Nordentoft S, Dieperink KB, Johansson SD, Jarden M, Piil K. Evaluation of a multimodal rehabilitative palliative care programme for patients with high‐grade glioma and their family caregivers. Scand J Caring Sci 2022;36:815–29. https://doi.org/10.1111/scs.13019. Chi N-C, Han S, Lin S-Y, Fu Y-K, Zhu Z, Nakad L, et al. Resilience-enhancing interventions for family caregivers: A systematic review. Chronic Illn 2024;20:199–220. https://doi.org/10.1177/17423953231174928. Rapp M, Von Sass C, Backhaus C, Hänggi D, Kamp MA, Sabel M. Would they do it again? Final treatment decisions in malignant brain tumour patients—a caregiver’s perspective. Support Care Cancer 2022;30:3985–93. https://doi.org/10.1007/s00520-022-06796-y. Chien C-Y, Kuo L-T, Lin C-P. Exploring the perspectives of early-stage postoperative glioblastoma patients and their caregivers on end-of-life care planning: An exploratory qualitative interview study. Appl Nurs Res 2025;81:151897. https://doi.org/10.1016/j.apnr.2024.151897. Pace A, Dirven L, Koekkoek JAF, Golla H, Fleming J, Rudà R, et al. European Association for Neuro-Oncology (EANO) guidelines for palliative care in adults with glioma. Lancet Oncol 2017;18:e330–40. https://doi.org/10.1016/S1470-2045(17)30345-5. Koekkoek JAF, Van Der Meer PB, Pace A, Hertler C, Harrison R, Leeper HE, et al. Palliative care and end-of-life care in adults with malignant brain tumors. Neuro-Oncol 2023;25:447–56. https://doi.org/10.1093/neuonc/noac216. Rietjens JAC, Sudore RL, Connolly M, Van Delden JJ, Drickamer MA, Droger M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol 2017;18:e543–51. https://doi.org/10.1016/S1470-2045(17)30582-X. Ito Y, Obana M, Kawakami D, Murakami N, Sakaguchi Y. The current status of bereavement follow-up in Japanese emergency departments: A cross-sectional nationwide survey. Int Emerg Nurs 2020;52:100872. https://doi.org/10.1016/j.ienj.2020.100872. Roberts KE, Jankauskaite G, Slivjak E, Rubin L, Schachter S, Stabler S, et al. Bereavement risk screening: A pathway to psychosocial oncology care. Psychooncology 2020;29:2041–7. https://doi.org/10.1002/pon.5526. Moss SJ, Wollny K, Poulin TG, Cook DJ, Stelfox HT, Ordons ARD, et al. Bereavement interventions to support informal caregivers in the intensive care unit: a systematic review. BMC Palliat Care 2021;20:66. https://doi.org/10.1186/s12904-021-00763-w. Dionne-Odom JN, Williams GR, Warren PP, Tims S, Huang C-HS, Taylor RA, et al. Implementing a Clinic-Based Telehealth Support Service (FamilyStrong) for Family Caregivers of Individuals with Grade IV Brain Tumors. J Palliat Med 2021;24:347–53. https://doi.org/10.1089/jpm.2020.0178. Dahlberg M, Bylund A, Gustavsson P, Calero TH, Wannheden C. What matters to persons living with brain tumors and their informal caregivers? An interview study of qualities in interpersonal relations. Soc Sci Med 2022;292:114575. https://doi.org/10.1016/j.socscimed.2021.114575. Au TH, Willis C, Reblin M, Peters KB, Nghiemphu PL, Taylor JW, et al. Correction to: Caregiver burden by treatment and clinical characteristics of patients with glioblastoma. Support Care Cancer 2022;30:1377–8. https://doi.org/10.1007/s00520-021-06691-y. James EA, Wallace MS, Chard MP, Camicia ME, Lutz BJ, Minns LA. Former Primary Caregivers of Patients With Glioblastoma Multiforme Evaluate the PATH (Preparedness Assessment for the Transition Home) Instrument. J Adv Nurs 2025;81:1583–97. https://doi.org/10.1111/jan.16420. Renovanz M, Maurer D, Lahr H, Weimann E, Deininger M, Wirtz CR, et al. Supportive Care Needs in Glioma Patients and Their Caregivers in Clinical Practice: Results of a Multicenter Cross-Sectional Study. Front Neurol 2018;9:763. https://doi.org/10.3389/fneur.2018.00763. Halkett GKB, Lobb EA, Shaw T, Sinclair MM, Miller L, Hovey E, et al. Do carer’s levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress? Support Care Cancer 2018;26:275–86. https://doi.org/10.1007/s00520-017-3846-x. Ownsworth T, Chan RJ, Jones S, Robertson J, Pinkham MB. Use of telehealth platforms for delivering supportive care to adults with primary brain tumors and their family caregivers: A systematic review. Psychooncology 2021;30:16–26. https://doi.org/10.1002/pon.5549. Zhao Y, Qiu X, Xiao Z, Kaufman MR. Trauma narratives and healing of offspring caregivers of breast cancer patients: a mixed qualitative methods study. BMC Psychol 2025;13:1395. https://doi.org/10.1186/s40359-025-03854-y. Kisić A, Klett MK, Schaefer R, Quente C, Sabel M, Rapp M, et al. Predicting Caregiver Anxiety and Depression From Patient Distress in Brain Tumor Dyads: Actor‐Partner Interdependence Model. Cancer Med 2025;14:e71271. https://doi.org/10.1002/cam4.71271. Sakurada K, Sato I, Ikeda M, Narita Y. Mental health status and associated factors of caregivers of patients with malignant brain tumors. J Neurooncol 2025;173:71–82. https://doi.org/10.1007/s11060-025-04963-9. Paterson C, Roberts C, Li J, Chapman M, Strickland K, Johnston N, et al. What are the experiences of supportive care in people affected by brain cancer and their informal caregivers: A qualitative systematic review. J Cancer Surviv 2024;18:1608–29. https://doi.org/10.1007/s11764-023-01401-5. Wasim A, Sajan M, Majid U. Patient-centered care frameworks, models and approaches: An environmental scan. Patient Exp J 2023;10:14–22. https://doi.org/10.35680/2372-0247.1806. Giusti A, Pukrittayakamee P, Alarja G, Farrant L, Hunter J, Mzimkulu O, et al. Developing a global practice-based framework of person-centred care from primary data: a cross-national qualitative study with patients, caregivers and healthcare professionals. BMJ Glob Health 2022;7:e008843. https://doi.org/10.1136/bmjgh-2022-008843. Mihret MG, Worku HA, Melesse TG. Financial toxicity and associated factors among cancer patients attending public hospitals in Ethiopia. Support Care Cancer 2025;33:502. https://doi.org/10.1007/s00520-025-09592-6. Additional Declarations No competing interests reported. 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01:08:38","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-8704501/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-8704501/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":105571287,"identity":"356c9f02-1c16-4a13-9b94-8588144bb5b6","added_by":"auto","created_at":"2026-03-27 13:22:24","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":102734,"visible":true,"origin":"","legend":"\u003cp\u003ePRISMA flow diagram\u003c/p\u003e","description":"","filename":"1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-8704501/v1/d70d41f49fc56137539ce4ff.jpg"},{"id":105571215,"identity":"967306c4-3b8a-42dd-bb4b-28dbb1d17bb3","added_by":"auto","created_at":"2026-03-27 13:22:07","extension":"jpg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":1099096,"visible":true,"origin":"","legend":"\u003cp\u003eIntracranial Tumor Caregiver Journey Map.\u003c/p\u003e","description":"","filename":"2.jpg","url":"https://assets-eu.researchsquare.com/files/rs-8704501/v1/60177332b71870bd7cf8420e.jpg"},{"id":106959466,"identity":"b10153f2-1590-4f3e-a82e-0b064fbc2243","added_by":"auto","created_at":"2026-04-15 09:10:01","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":2860119,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8704501/v1/67a11bf6-4446-4f6c-bf43-88bb78ca3a4f.pdf"},{"id":105571161,"identity":"4784a841-1721-4a59-8f0b-de848f86c57b","added_by":"auto","created_at":"2026-03-27 13:21:54","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":25193,"visible":true,"origin":"","legend":"","description":"","filename":"SupplementaryFile.docx","url":"https://assets-eu.researchsquare.com/files/rs-8704501/v1/727c7249bd79fa9f274f59c3.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Mapping the Uncharted Journey: Constructing a Journey Map for Caregivers of Patients with Intracranial Tumors Based on a Systematic Review of Qualitative Research","fulltext":[{"header":"Background","content":"\u003cp\u003eIntracranial tumors, as a category of neurological diseases characterized by high incidence, mortality, and disability rates, have become a significant global public health challenge[1\u0026ndash;3]. These conditions not only impose severe physical and psychological impacts on patients but also place substantial disease burdens and economic pressures on their families and the broader healthcare system[4,5]. With advances in diagnostic and therapeutic technologies, patients\u0026rsquo; survival periods have been extended, meaning their families often face a longer, more complex, and uncertain caregiving journeytime. Throughout this process, family caregivers play an indispensable and central role. They typically assume multiple responsibilities: serving not only as daily care providers and participants in medical decision-making but also as collaborators in rehabilitation efforts and crucial communication bridges between patients and the healthcare system[6\u0026ndash;8]. However, this central role also exposes caregivers to a context of multidimensional stressors. They must simultaneously manage high medical and financial burdens, maintain routine family functions, coordinate personal career development, and navigate dynamic adjustments in family roles and relationships[9\u0026ndash;11].Remaining in such a high-stress state over the long term often results in caregivers\u0026rsquo; physical and mental health needs being overlooked or deprioritized, which can trigger a range of long-term health impairments, including anxiety, depression, post-traumatic stress disorder (PTSD), and chronic physical fatigue[12\u0026ndash;15]. Additionally, caregivers often suppress their own grief and exhaustion in front of patients, consistently presenting a positive and stable emotional state to serve as an emotional anchor for the patient. This emotional management consumes considerable psychological energy and lacks appropriate outlets for release, leading to an accumulation of emotional burden[16].At the family and societal levels, primary caregivers may experience conflicts with relatives due to inequitable distribution of caregiving responsibilities, or become socially isolated as they gradually disengage from their original social networks after prolonged focus on caregiving[17]. On the practical front of caregiving, they must also navigate complex tasks such as understanding specialized medical terminology, evaluating different treatment options, and handling medical reimbursement procedures. The challenges of information asymmetry and the significant responsibility of decision-making often leave them feeling inadequately informed and overwhelmed, especially when facing major medical choices where they carry heavy ethical and emotional burdens [18].Therefore, gaining an in-depth understanding of the holistic challenges caregivers face in this complex caregiving context, the mechanisms through which stressors operate, and their specific support needs\u0026mdash;and subsequently developing systematic and effective multidimensional support strategies\u0026mdash;holds important theoretical and practical significance for alleviating caregiver burden, improving the quality of family care, and enhancing patient outcomes.\u003c/p\u003e \u003cp\u003eIn recent years, the burden and needs of caregivers for patients with intracranial tumors have gradually garnered academic attention. Existing studies have widely revealed that this group has significant and unmet needs in areas such as information acquisition, caregiving skills, psychological support, and access to social resources[19,20]. However, much of this research has certain limitations: it often focuses on specific phases such as the perioperative or end-of-life phases, while relatively neglecting other critical stages within the prolonged disease course, such as the continuation treatment phase and disease progression phases[21\u0026ndash;23]. This phase-specific focus fails to fully capture the genuine picture of how caregiver burden and needs dynamically evolve along the disease trajectory. In contrast, within other chronic disease fields, research adopting a \"whole-course, stage-specific\" approach to explore caregiver experience is already relatively common[24,25]. Currently, there is a lack of an integrated framework capable of holistically depicting the dynamic evolution of intracranial tumor caregivers' experiences, and a failure to systematically elucidate the key challenges, critical transition points, and corresponding potential support pathways at different stages. The absence of this holistic perspective hinders the effective development and implementation of targeted, continuous support intervention systems and public health policies.\u003c/p\u003e \u003cp\u003eJourney mapping, as a systematic visualization tool, is commonly used to describe and evaluate an individual's overall experience within a healthcare process. It presents an individual's behaviors, perceptions, and feelings throughout their medical journey in a phased and contextualized manner[26]. The strength of journey mapping lies in its robust potential for synthesis and insight generation. It can integrate fragmented evidence to synthesize findings from heterogeneous studies into a coherent, holistic narrative framework[27]. Furthermore, it is capable of identifying key caregiver pain points, clearly revealing the core challenges and supportive care needs they face across different stages of care[28]. Currently, journey mapping has been widely applied in fields such as gestational diabetes[29], cardiovascular and cerebrovascular diseases[30,31], sleep disorders[32] disability[33], and infectious diseases[34]. Within caregiver research specifically, existing literature indicates that the journey mapping method has been preliminarily applied to depict the caregiving trajectory of caregivers for patients undergoing total knee arthroplasty[35] and the psychological and social adaptation journey of partners in high-risk pregnancies[36]. However, a systematic literature review reveals that few studies have applied journey mapping to depict the experiences of the specific population of caregivers for patients with intracranial tumors.\u003c/p\u003e \u003cp\u003eFrom this methodological perspective, this study aims to systematically synthesize qualitative evidence to construct a clearly defined caregiver journey map. This map will systematically delineate the tasks undertaken, emotional fluctuations, core pain points, and potential intervention opportunities for caregivers across distinct stages, including the screening and diagnosis phase, perioperative period, continuation treatment phase, disease progression phase, end-of-life care phase, and the bereavement and reconstruction phase. It will also identify the key stakeholders involved and their patterns of interaction at each stage. By systematically visualizing this journey, the map will intuitively reveal the dynamic evolution of caregiver experiences and their stage-specific needs. This will provide a robust empirical foundation for developing stage-specific personalized support programs, formulating targeted public health and policy initiatives, guiding educational reforms, and planning future longitudinal research. Ultimately, the goal is to enhance the overall well-being of family caregivers and improve the quality of care for patients with intracranial tumors.\u003c/p\u003e"},{"header":"Design and methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy design\u003c/h2\u003e \u003cp\u003eThis systematic review is reported in accordance with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines[37] and strictly adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement[38]. Furthermore, the study protocol has been prospectively registered with the International Prospective Register of Systematic Reviews (PROSPERO) under registration number CRD420251244021.\u003c/p\u003e \u003cp\u003eData sources and search strategy\u003c/p\u003e \u003cp\u003eThe search strategy was pre-defined by the research team. We conducted computerized searches in PubMed, Web of Science, Scopus, Embase, CINAHL, and PsycINFO. The search was limited to articles published from the inception of each database until December 2025. A snowball search was performed on the reference lists of included studies and relevant systematic reviews. Boolean logic was employed to combine Medical Subject Headings (MeSH) terms and keywords. The search strategy comprised three categories of terms: intracranial tumors, caregivers, and qualitative research. The complete search strategy is available in Supplementary File 1.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eStudy selection\u003c/h3\u003e\n\u003cp\u003eWe developed the inclusion and exclusion criteria for the study based on the PICOS framework (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e)[39].\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eInclusion and exclusion criteria for studies.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eItems\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eInclusion criteria / exclusion criteria\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eInclusion criteria\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eP-Population\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eInformal caregivers of patients with intracranial tumors are defined as family members, partners, relatives, or friends (aged\u0026thinsp;\u0026ge;\u0026thinsp;18 years) who provide unpaid daily care, emotional support, or practical assistance to patients with intracranial tumors.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eI-Intervention\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eThe experiences, perceived needs, and feelings of informal caregivers of patients with intracranial tumors.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC-Context\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eThe experiences of informal caregivers of patients with intracranial tumors can occur in any setting, such as the home, hospital, nursing home, hospice, or long-term care facility.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eO-Outcome\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eThe experiences, perspectives, and needs of informal caregivers of patients with intracranial tumors.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eS-Study design\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAny qualitative study, including but not limited to phenomenology, ethnography, descriptive qualitative research, grounded theory, and mixed-methods designs; for mixed-methods studies, only the qualitative components were included.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eExclusion criteria\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e(1) Studies in which the experiences of informal caregivers of patients with intracranial tumors are mixed with those of the patients and cannot be clearly distinguished.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e(2) Studies from which qualitative data cannot be extracted.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e(3) Studies not published in English.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e(4) Books or book chapters, essays, theses or dissertations, commentaries, and conference abstracts.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e\n\u003ch3\u003eData extraction\u003c/h3\u003e\n\u003cp\u003eSearch results were exported from the electronic databases to EndNote X21. After removing duplicate citations, two authors (NF and LY) independently screened the titles and abstracts against the eligibility criteria. If the information in the title and abstract was ambiguous, the full text of the article was reviewed to determine its eligibility. Studies meeting the inclusion criteria underwent a full-text review. Following full-text screening, a total of 18 studies met the final inclusion criteria. At each stage, records were independently reviewed by the two authors (NF and LY). Disagreements were resolved through discussion within the research team, and reasons for exclusion were documented.\u003c/p\u003e\n\u003ch3\u003eRisk of bias assessment\u003c/h3\u003e\n\u003cp\u003eThe quality of the included studies was assessed using the Critical Appraisal Skills Programme (CASP) checklist[40]. The appraisal results were verified by two authors (NF and LY), with a third author (XT) available to resolve any conflicts. This checklist comprises ten criteria: clarity and appropriateness of the research aims, methodology, research design, recruitment strategy, data collection, the relationship between researchers and participants, ethical considerations, data analysis, findings, and the value of the research. Each criterion requires a response of \"yes,\" \"no,\" or \"cannot tell.\" This tool enabled a thorough familiarization with the content of the papers and established a foundation for assessing the methodological limitations of the findings synthesized in this review.\u003c/p\u003e\n\u003ch3\u003eData extraction process\u003c/h3\u003e\n\u003cp\u003eFollowing a comprehensive full-text review, two researchers extracted the relevant information required for this systematic review into a pre-structured Excel spreadsheet. The extracted information primarily included the author(s)' name(s), year of publication, study objectives, patient characteristics, caregiver characteristics, recruitment settings and sample sampling methods, research methods, analytical methods, and main findings.\u003c/p\u003e \u003cp\u003eWe employed thematic analysis to conduct an in-depth exploration of the interview data. The data synthesis followed the three-stage thematic synthesis method proposed by Thomas and Harden[41]. In the first stage, two researchers independently reviewed the articles and performed line-by-line coding using NVivo V.12.0, focusing on the authentic experiences, underlying needs, and feelings of intracranial tumor caregivers. The coded data were subsequently subjected to collective reflection and discussion. In the second stage, the independent codes were grouped into descriptive themes. The researchers then cross-checked and discussed these groupings to minimize subjective bias and conceptual redundancy among the codes, ensuring the themes accurately represented the included studies. To ensure reliability, the researchers regularly reviewed and discussed coding consistency. In the final stage, overarching analytical themes were developed from the descriptive themes. Based on these synthesized analytical themes, a journey map was created to analyze the experiences and perceptions of intracranial tumor caregivers throughout the entire caregiving trajectory.\u003c/p\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eSearch and selection results\u003c/h2\u003e \u003cp\u003eA comprehensive search across six English-language electronic databases yielded a total of 18,518 studies. Among these, 4,233 records were identified as duplicates and subsequently removed. After screening titles and abstracts, 14,167 articles were excluded based on the eligibility criteria, leaving 118 articles selected for full-text review. For various reasons, 100 articles were excluded (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). A manual search of the reference lists of relevant articles did not identify any additional eligible studies. Consequently, 18 articles were ultimately included in this meta-synthesis.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eStudy characteristics\u003c/h3\u003e\n\u003cp\u003eAmong the 18 studies included in this review, 17 employed a qualitative design, and 1 utilized a mixed-methods design. Of the 17 qualitative studies, the designs comprised descriptive qualitative research (n\u0026thinsp;=\u0026thinsp;7), phenomenological research (n\u0026thinsp;=\u0026thinsp;5), and grounded theory research (n\u0026thinsp;=\u0026thinsp;5). The specific qualitative methodology within the mixed-methods study was not explicitly stated. Regarding data analysis, thematic analysis was applied in 15 studies, while content analysis, phenomenological hermeneutics, and the constant comparative method derived from grounded theory were each employed in one study, respectively.The included articles were published between 2008 and 2025. The sample sizes in these studies ranged from 6 to 92 caregivers, with ages spanning from 18 to 84 years. In the studies included in this review, the majority of caregivers (79.9%) were spouses of the patients, while 20.1% comprised the patients' parents, children, other relatives, or friends.The studies were conducted across eight countries. Over 50% of the included studies were concentrated in European countries, including the United Kingdom (n\u0026thinsp;=\u0026thinsp;3), Denmark (n\u0026thinsp;=\u0026thinsp;3), Turkey (n\u0026thinsp;=\u0026thinsp;1), Belgium (n\u0026thinsp;=\u0026thinsp;1), and Sweden (n\u0026thinsp;=\u0026thinsp;1). The remaining studies were conducted in North America, comprising the United States (n\u0026thinsp;=\u0026thinsp;3) and Canada (n\u0026thinsp;=\u0026thinsp;1), and in Oceania, specifically Australia (n\u0026thinsp;=\u0026thinsp;4). One additional study was conducted jointly in Australia and Denmark.Study characteristics are summarised in Table \u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eCharacteristics of included studies.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"9\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c9\" colnum=\"9\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAuthors\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCountries\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eObjectives\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003ePatient\u003c/p\u003e \u003cp\u003echaracteristics\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eCaregiver\u003c/p\u003e \u003cp\u003echaracteristics\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eRecruitment Setting,Sampling Method\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003eResearch\u003c/p\u003e \u003cp\u003emethods\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c8\"\u003e \u003cp\u003eAnalysis\u003c/p\u003e \u003cp\u003emethods\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c9\"\u003e \u003cp\u003eTheme\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSchmer\u003c/p\u003e \u003cp\u003e2008[42]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUnited States\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo explore the caregiver perspective of providing care during the initial 6 months of chemotherapy treatment for a primary malignant brain tumor.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: Primary malignant brain tumor (e.g., astrocytoma, glioblastoma).\u003c/p\u003e \u003cp\u003eAge and gender: Were not reported in the study.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;10\u003c/p\u003e \u003cp\u003eAge, Gender: Not reported.\u003c/p\u003e \u003cp\u003eRelationship to Patient: spouse (n\u0026thinsp;=\u0026thinsp;7), daughter (n\u0026thinsp;=\u0026thinsp;2), and son-in-law (n\u0026thinsp;=\u0026thinsp;1).\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ea single institution located in an urban Midwestern city in the United States\u003c/p\u003e \u003cp\u003ePurposeful sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003ePhenomenological Research\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eThematic Analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1.The diagnosis of a brain tumor is a shock.\u003c/p\u003e \u003cp\u003e2.Immediate family role changes occur.\u003c/p\u003e \u003cp\u003e3.There are psychosocial effects for the caregiver, his or her family, and the person with the brain tumor.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSchubart\u003c/p\u003e \u003cp\u003e2008[43]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUnited States\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eResearch on the specific challenges faced by family caregivers in caring for brain tumor patients, including caregiving tasks, decision-making, and information and support needs.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: Primary brain tumor (e.g., Glioblastoma, Anaplastic oligoastrocytoma, etc.)\u003c/p\u003e \u003cp\u003eAge range: 20\u0026ndash;70\u0026thinsp;+\u0026thinsp;years\u003c/p\u003e \u003cp\u003eGender: Not reported\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size:N\u0026thinsp;=\u0026thinsp;25\u003c/p\u003e \u003cp\u003eAge range: 37\u0026ndash;72 years\u003c/p\u003e \u003cp\u003eGender: 18 females, 7 males\u003c/p\u003e \u003cp\u003eRelationship to patient: spouse (n\u0026thinsp;=\u0026thinsp;18),parent(n\u0026thinsp;=\u0026thinsp;4), children(n\u0026thinsp;=\u0026thinsp;2), sibling(n\u0026thinsp;=\u0026thinsp;1).\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eNeuro-Oncology Center at the University of Virginia Health System\u003c/p\u003e \u003cp\u003ePurposive and stratified sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eGrounded Theory\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eThematic Analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1.Family issues\u003c/p\u003e \u003cp\u003eRelationships and changing rolesHelping with activities of daily livingnursing duties;\u003c/p\u003e \u003cp\u003eEmployment and financial issues;\u003c/p\u003e \u003cp\u003eBalancing the needs of other family members;\u003c/p\u003e \u003cp\u003e2.Managing challenging behaviors\u003c/p\u003e \u003cp\u003eUnderstanding neurocognitive changes;\u003c/p\u003e \u003cp\u003eDealing with depression and personality changes;\u003c/p\u003e \u003cp\u003eDealing with impulsivity or aggressive behavior;\u003c/p\u003e \u003cp\u003e3.Personal feelings\u003c/p\u003e \u003cp\u003eFeeling overwhelmed;\u003c/p\u003e \u003cp\u003eDenial;\u003c/p\u003e \u003cp\u003eResentment, anger, guilt, depression,and anxiety;\u003c/p\u003e \u003cp\u003e;Lsolation\u003c/p\u003e \u003cp\u003eSense making;\u003c/p\u003e \u003cp\u003e4.Navigating through the medical system\u003c/p\u003e \u003cp\u003elmproving physician-caregiver communication;\u003c/p\u003e \u003cp\u003eUnderstanding the medical system.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMcConigley 2010[44]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAustralia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo articulate the experiences of family caregivers of people diagnosed with high-grade glioma.\u003c/p\u003e \u003cp\u003eTo describe the information and support needs of these family caregivers.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: Astrocytoma Grade 3\u0026ndash;4\u003c/p\u003e \u003cp\u003eAnd Glioblastoma multiforme\u003c/p\u003e \u003cp\u003eAge range: 30\u0026ndash;39 (n\u0026thinsp;=\u0026thinsp;1), 40\u0026ndash;49 (n\u0026thinsp;=\u0026thinsp;3), 50\u0026ndash;59 (n\u0026thinsp;=\u0026thinsp;9), 60\u0026ndash;69 (n\u0026thinsp;=\u0026thinsp;5), 70+ (n\u0026thinsp;=\u0026thinsp;2), Missing data (n\u0026thinsp;=\u0026thinsp;1)\u003c/p\u003e \u003cp\u003eGender:Male (n\u0026thinsp;=\u0026thinsp;16), Female (n\u0026thinsp;=\u0026thinsp;5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;21\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003e30\u0026ndash;39(n\u0026thinsp;=\u0026thinsp;2),40\u0026ndash;49(n\u0026thinsp;=\u0026thinsp;2),50\u0026ndash;59(n\u0026thinsp;=\u0026thinsp;10),60\u0026ndash;69(n\u0026thinsp;=\u0026thinsp;6),70+: (n\u0026thinsp;=\u0026thinsp;1)\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;4); Female(n\u0026thinsp;=\u0026thinsp;17)\u003c/p\u003e \u003cp\u003eRelationship to Patient: Spouse/partner: (n\u0026thinsp;=\u0026thinsp;20),Parent(n\u0026thinsp;=\u0026thinsp;1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eThe medical oncology department of a tertiary referral centre for neurological cancers in Western Australia.\u003c/p\u003e \u003cp\u003ePurposive sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eGrounded Theory\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003econstant comparison method\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eCentral theme: A Time of Rapid Change\u003c/p\u003e \u003cp\u003eSub-themes:\u003c/p\u003e \u003cp\u003eRenegotiating Relationships;\u003c/p\u003e \u003cp\u003eLearning to be a Caregiver.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTastan\u003c/p\u003e \u003cp\u003e2011[45]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eTurkey\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo determine and classify the experiences of the relatives of patients who underwent cranial surgery for a brain tumor during the perioperative period and home care.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: Glioblastoma,Astrositoma,Schwannoma,Oligodendrioglioma,Pituitary adenoma\u003c/p\u003e \u003cp\u003eAge range: Mean\u0026thinsp;\u0026plusmn;\u0026thinsp;SD: 40.1\u0026thinsp;\u0026plusmn;\u0026thinsp;15.4 years\u003c/p\u003e \u003cp\u003eGender:Male (n\u0026thinsp;=\u0026thinsp;6), Female (n\u0026thinsp;=\u0026thinsp;4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;10\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003eMean\u0026thinsp;\u0026plusmn;\u0026thinsp;SD:38\u0026thinsp;\u0026plusmn;\u0026thinsp;9.95 years\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;4); Female(n\u0026thinsp;=\u0026thinsp;6)\u003c/p\u003e \u003cp\u003eRelationship to Patient: Spouse (n\u0026thinsp;=\u0026thinsp;4), Offspring (n\u0026thinsp;=\u0026thinsp;4), Parent (n\u0026thinsp;=\u0026thinsp;1), Sibling (n\u0026thinsp;=\u0026thinsp;1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eNeurosurgery department of a military training and research hospital in Turkey.\u003c/p\u003e \u003cp\u003ePurposive sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eDescriptive qualitative study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eThematic Analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1. Personal Feelings\u003c/p\u003e \u003cp\u003eFirst Reactions: Shock and Fear of Death;\u003c/p\u003e \u003cp\u003eDecision for Surgery: Helplessness or Acceptance;\u003c/p\u003e \u003cp\u003eFirst Meeting With the Patient After\u003c/p\u003e \u003cp\u003eSurgery: Happiness or Fear;\u003c/p\u003e \u003cp\u003eAmbiguity: Anxiety;\u003c/p\u003e \u003cp\u003e2. Management of the Changes\u003c/p\u003e \u003cp\u003eManagement of the Side Effects of the Tumor;\u003c/p\u003e \u003cp\u003eManagement of Role and Behavioral Changes;\u003c/p\u003e \u003cp\u003eManagement of Care in the Home;\u003c/p\u003e \u003cp\u003eSocial Support;\u003c/p\u003e \u003cp\u003e3. Need for Knowledge About Managing the Disease\u003c/p\u003e \u003cp\u003eNeed for sufficient information on surgical procedures, complications, patient care, and home care (half of participants reported insufficient information, while the other half considered it adequate) Process.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eShortman\u003c/p\u003e \u003cp\u003e2013[46]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUnited\u003c/p\u003e \u003cp\u003eKingdom\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1.To explore the impact of having a child with a brain tumour on the main caregiver in the family.\u003c/p\u003e \u003cp\u003e2.To describe mothers\u0026rsquo; experiences of coping with their child\u0026rsquo;s illness, including personal barriers and strengths.\u003c/p\u003e \u003cp\u003e3.To identify causes of stress and sources of support to inform improvements in care delivery.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: Not explicitly specified in the study\u003c/p\u003e \u003cp\u003eAge range: 8\u0026ndash;13 years,Median age: 10.5 years\u003c/p\u003e \u003cp\u003eGender:Male (n\u0026thinsp;=\u0026thinsp;4), Female (n\u0026thinsp;=\u0026thinsp;2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;6\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003eNot reported\u003c/p\u003e \u003cp\u003eGender: Female\u003c/p\u003e \u003cp\u003eRelationship to Patient: mothers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ea group of caregivers enrolled in a longitudinal study of outcome following diagnosis of a childhood brain tumour\u003c/p\u003e \u003cp\u003ePurposive sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eDescriptive qualitative study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eThematic Analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1.Impact\u003c/p\u003e \u003cp\u003e2.Coping\u003c/p\u003e \u003cp\u003e3.Help and Support\u003c/p\u003e \u003cp\u003e4.Conflict\u003c/p\u003e \u003cp\u003e5.Hindrance and Heartache\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCollins\u003c/p\u003e \u003cp\u003e2014[47]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAustralia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1.To provide an in-depth exploration of the needs and concerns of people caring for patients with primary malignant glioma (PMG).\u003c/p\u003e \u003cp\u003e2.To develop greater understanding of these care needs during the patient\u0026rsquo;s palliative illness phase.\u003c/p\u003e \u003cp\u003e3.To obtain insight into bereaved family members\u0026rsquo; experiences of caring for someone with PMG.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: High-grade primary malignant glioma (PMG grades III\u0026ndash;IV)\u003c/p\u003e \u003cp\u003eAge and gender: Were not reported in the study.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;23\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003e27 years to 77 years (median 54 years)\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;9); Female(n\u0026thinsp;=\u0026thinsp;14)\u003c/p\u003e \u003cp\u003eRelationship to Patient:Spouse/partner (n\u0026thinsp;=\u0026thinsp;17), Child (n\u0026thinsp;=\u0026thinsp;4), Other (n\u0026thinsp;=\u0026thinsp;2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eNeurosurgery, oncology and palliative care services of two Australian metropolitan hospitals.\u003c/p\u003e \u003cp\u003ePurposive sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eGrounded Theory\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eThematic Analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1.The challenge of caring:\u003c/p\u003e \u003cp\u003eThe enormity of the caring role;\u003c/p\u003e \u003cp\u003eNeurocognitive changes and unique illness trajectory of PMG;\u003c/p\u003e \u003cp\u003eThe complexity of living with an uncertain yet poor prognosis;\u003c/p\u003e \u003cp\u003e2.The lack of support available to carers:\u003c/p\u003e \u003cp\u003eLack of care coordination and continuity;\u003c/p\u003e \u003cp\u003eLack of individualised information;\u003c/p\u003e \u003cp\u003eLack of preparation;\u003c/p\u003e \u003cp\u003eLack of emotional support;\u003c/p\u003e \u003cp\u003eInconsistencies of service provision;\u003c/p\u003e \u003cp\u003e3.The suffering of caring:\u003c/p\u003e \u003cp\u003eRelentlessness of caring;\u003c/p\u003e \u003cp\u003eLoneliness of caring;\u003c/p\u003e \u003cp\u003eOngoing suffering for bereaved carers.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCoolbrandt\u003c/p\u003e \u003cp\u003e2015[48]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBelgium\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1.To explore the experience of family caregivers of patients with high-grade glioma (HGG).\u003c/p\u003e \u003cp\u003e2.To identify family caregivers\u0026rsquo; needs related to professional care.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: High-grade glioma (HGG)\u003c/p\u003e \u003cp\u003eAge and gender: Were not reported in the study.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;16\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003eMean 54.2 years (range 31\u0026ndash;68 years)\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;6); Female(n\u0026thinsp;=\u0026thinsp;10)\u003c/p\u003e \u003cp\u003eRelationship to Patient:partner (n\u0026thinsp;=\u0026thinsp;13), Parents (n\u0026thinsp;=\u0026thinsp;2), Friend (n\u0026thinsp;=\u0026thinsp;1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eOncology wards of the University Hospitals Leuven, Belgium.\u003c/p\u003e \u003cp\u003epurposive sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eGrounded Theory\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eThematic Analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1.Experiences of Family Caregivers:\u003c/p\u003e \u003cp\u003eFeeling lost and alone in a new life;\u003c/p\u003e \u003cp\u003eCommitted but struggling to care;\u003c/p\u003e \u003cp\u003e2.Caring Needs:\u003c/p\u003e \u003cp\u003eNeed for information;\u003c/p\u003e \u003cp\u003eNeed for consideration and support;\u003c/p\u003e \u003cp\u003eNeed for aligned professional care.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePiil\u003c/p\u003e \u003cp\u003e2018[49]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDenmark\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo explore the perspectives of newly bereaved caregivers to patients with high-grade glioma (HGG) regarding end-of-life (EOL) caregiving and their bereavement experiences.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: High-grade glioma (HGG): glioblastoma、anaplastic astrocytoma (AA) grade III\u003c/p\u003e \u003cp\u003eAge range:50\u0026ndash;68 years old\u003c/p\u003e \u003cp\u003eGender: Were not reported in the study.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;8\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003eMean 48 years (range not fully specified, individual ages 28\u0026ndash;60 years)\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;6); Female(n\u0026thinsp;=\u0026thinsp;10)\u003c/p\u003e \u003cp\u003eRelationship to Patient:Wife (n\u0026thinsp;=\u0026thinsp;4), Husband (n\u0026thinsp;=\u0026thinsp;1), Son (n\u0026thinsp;=\u0026thinsp;1), Daughter (n\u0026thinsp;=\u0026thinsp;1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eNeuro-oncological Rehabilitation (NEON Rehab) study\u003c/p\u003e \u003cp\u003epurposive sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eDescriptive qualitative study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eThematic Analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1.Late-stage caregiving is comprehensive and taxing.\u003c/p\u003e \u003cp\u003e2.Releasing the responsibility of the primary caregiving role:\u003c/p\u003e \u003cp\u003e3.Feelings of grief and relief:\u003c/p\u003e \u003cp\u003e4.Suggestions for clinical practice:\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFrancis\u003c/p\u003e \u003cp\u003e2020[50]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDenmark\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo explore ethical dilemmas spouses experience in the everyday care of a partner in treatment for primary malignant brain tumour.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: Primary malignant brain tumour (PMBT).\u003c/p\u003e \u003cp\u003eAge and gender: Were not reported in the study.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;10 spouses\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003e36 to 76 years.\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;3); Female(n\u0026thinsp;=\u0026thinsp;7)\u003c/p\u003e \u003cp\u003eRelationship to Patient:Spouses\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eAn oncology ward at a university hospital in Denmark. Spouses often drove their partner to the hospital which allowed for recruitment.\u003c/p\u003e \u003cp\u003epurposive sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eDescriptive qualitative study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eThematic Analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eMain theme: \"Oscillating in a changing relationship\".\u003c/p\u003e \u003cp\u003eSubthemes:\u003c/p\u003e \u003cp\u003e1.\"Doing the right thing in unpredictable daily situations\".\u003c/p\u003e \u003cp\u003e2.\"Torn between patience and guilt\".\u003c/p\u003e \u003cp\u003e3.\"Living in a time of uncertainty, hope and despair\".\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eKirby\u003c/p\u003e \u003cp\u003e2022[51]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAustralia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo better understand the everyday experiences of home-based informal caregivers of people living with glioma in Queensland, Australia, and explore how the various experiences, demands, and social and relational dynamics in/of informal care (re)produce forms of isolation and loneliness.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: Glioma\u003c/p\u003e \u003cp\u003eAge range:24 to 84 years\u003c/p\u003e \u003cp\u003eGender: Were not reported in the study.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;32\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003e18 to 84 years.\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;11); Female(n\u0026thinsp;=\u0026thinsp;21)\u003c/p\u003e \u003cp\u003eRelationship to Patient:Partners (n\u0026thinsp;=\u0026thinsp;17), parents (n\u0026thinsp;=\u0026thinsp;5), children (n\u0026thinsp;=\u0026thinsp;4), siblings n=(2), friends (n\u0026thinsp;=\u0026thinsp;4).\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eA tertiary metropolitan hospital in Queensland, Australia\u003c/p\u003e \u003cp\u003ePurposive sampling.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003ePhenomenological Research\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eThematic Analysis(Framework Approach)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1.The \u0026lsquo;need\u0026rsquo; to be near the care recipient, and the implications for caregiver mobility;\u003c/p\u003e \u003cp\u003e2.The strong sense of responsibility for care, and the virtues of \u0026lsquo;good\u0026rsquo; caring;\u003c/p\u003e \u003cp\u003e3.Experiences of loneliness in the company of others;\u003c/p\u003e \u003cp\u003e4.Postponement of social connection and minimising the self.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFrancis\u003c/p\u003e \u003cp\u003e2022[52]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDenmark\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo investigate spouses\u0026rsquo; experiences of suffering in their role as main caregiver of a partner with primary malignant brain tumor (PMBT).\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: Primary malignant brain tumor (PMBT).\u003c/p\u003e \u003cp\u003eAge range And Gender: Were not reported in the study.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;10 spouses.\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003e36 to 76 years.\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;3); Female(n\u0026thinsp;=\u0026thinsp;7)\u003c/p\u003e \u003cp\u003eRelationship to Patient:Spouses\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eAn oncology ward at a university hospital in Denmark\u003c/p\u003e \u003cp\u003ePurposive sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eA hermeneutic qualitative interview design\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eBrinkmann and Kvale\u0026rsquo;s 5-step hermeneutic analysis guide\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eThree central themes with two subthemes each:\u003c/p\u003e \u003cp\u003eCentral Theme 1: Enduring everyday life\u003c/p\u003e \u003cp\u003eStruggling with exhaustion;\u003c/p\u003e \u003cp\u003eSuppressing emotions and losing the grip;\u003c/p\u003e \u003cp\u003eCentral Theme 2: Being overlooked and hurting\u003c/p\u003e \u003cp\u003eDisappointed at check-ups;\u003c/p\u003e \u003cp\u003eBurdened by kind but ignorant friends and close family members;\u003c/p\u003e \u003cp\u003eCentral Theme 3: Being acknowledged and feeling good\u003c/p\u003e \u003cp\u003eSmall things matter;\u003c/p\u003e \u003cp\u003eQuality time with a sensitive friend or family member.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSayal\u003c/p\u003e \u003cp\u003e2023[53]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCanada\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo explore the experience of parental caregivers caring for medulloblastoma survivors, including family experiences, social circumstances, and family-reported impact.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: Medulloblastoma\u003c/p\u003e \u003cp\u003eAge range:Median age at diagnosis was 7 years (range: 1\u0026ndash;9 years); median age from treatment at interview was 9.5 years (range: 5\u0026ndash;12 years).\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;12); Female(n\u0026thinsp;=\u0026thinsp;8).\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;20\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003eWere not reported in the study.\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;15); Female(n\u0026thinsp;=\u0026thinsp;5)\u003c/p\u003e \u003cp\u003eRelationship to Patient:Parental caregivers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eSpecialized survivor clinics at two large quaternary centers in Toronto, Canada\u003c/p\u003e \u003cp\u003ePurposive sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003egrounded theory\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eThematic Analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eThree major themes with associated subthemes:\u003c/p\u003e \u003cp\u003eCentral Theme 1: Significant long-term challenges associated with child\u0026rsquo;s survivorship\u003c/p\u003e \u003cp\u003eMedical treatment sequelae;\u003c/p\u003e \u003cp\u003eSchool issues and behavioral concerns;\u003c/p\u003e \u003cp\u003eSurveillance and access to care;\u003c/p\u003e \u003cp\u003eCentral Theme 2: Impact on personal and family QOL linked to survivor\u0026rsquo;s QOL\u003c/p\u003e \u003cp\u003eParental QOL;\u003c/p\u003e \u003cp\u003eParental mental health and coping;\u003c/p\u003e \u003cp\u003eSpousal relationships;\u003c/p\u003e \u003cp\u003effects on the family unit as a whole;\u003c/p\u003e \u003cp\u003eCentral Theme 3: Conflicting emotions related to survivor\u003c/p\u003e \u003cp\u003eFeeling happiness with concurrent worry, fear, and stress;\u003c/p\u003e \u003cp\u003eConcerns about the future.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRimmer\u003c/p\u003e \u003cp\u003e2024[16]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUnited\u003c/p\u003e \u003cp\u003eKingdom\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo explore the emotional impact of informal caregiving for people with lower-grade gliomas (LGGs), including experiences related to the illness, uncertain prognosis, care recipient changes, and caregiving responsibilities.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: Lower-grade gliomas (grade 2 astrocytoma, grade 2 or 3 oligodendroglioma).\u003c/p\u003e \u003cp\u003eAge range:mostly in their 30s and 40s\u003c/p\u003e \u003cp\u003eAnd Gender:Were not reported in the study.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;19\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003eMean age 54.6 years (range 36\u0026ndash;78 years)\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;5); Female(n\u0026thinsp;=\u0026thinsp;14)\u003c/p\u003e \u003cp\u003eRelationship to Patient:spouses(n\u0026thinsp;=\u0026thinsp;15),sisters(n\u0026thinsp;=\u0026thinsp;2), mothers(n\u0026thinsp;=\u0026thinsp;2).\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eUnited Kingdom. Recruitment channels included NHS collaborating sites, nominations from LGG patients in another project phase, and dissemination via The Brain Tumour Charity\u0026rsquo;s networks.\u003c/p\u003e \u003cp\u003econvenience sampling,snowball sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eDescriptive qualitative study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eThematic Analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eOne overarching theme and three core themes with associated subthemes:\u003c/p\u003e \u003cp\u003eOverarching Theme: Emotional responses to the illness\u003c/p\u003e \u003cp\u003eSubtheme 1: Feeling helpless\u003c/p\u003e \u003cp\u003eSubtheme 2: Feeling distress\u003c/p\u003e \u003cp\u003eSubtheme 3: Adjusting and managing\u003c/p\u003e \u003cp\u003eCore Theme 1: Emotional responses to the unknown\u003c/p\u003e \u003cp\u003eSubtheme: Anxiety about future uncertainty\u003c/p\u003e \u003cp\u003eCore Theme 2: Emotional consequences of care recipient changes\u003c/p\u003e \u003cp\u003eSubtheme 1: Challenges of changed relationship dynamics\u003c/p\u003e \u003cp\u003eSubtheme 2: The need to be resilient\u003c/p\u003e \u003cp\u003eCore Theme 3: Emotional weight of the responsibility\u003c/p\u003e \u003cp\u003eSubtheme 1: Feeling responsible\u003c/p\u003e \u003cp\u003eSubtheme 2: Feeling burnout\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eClarke\u003c/p\u003e \u003cp\u003e2024[54]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAustralia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e(i) To explore what carers of people with high-grade glioma (HGG) perceive could improve their preparedness to care; (ii) To identify what needs carers reported they required additional support with.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: High-grade glioma (HGG), encompassing grade III and IV glioblastoma.\u003c/p\u003e \u003cp\u003eAge range And Gender: Were not reported in the study.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;92\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003eWere not reported in the study.\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;18); Female(n\u0026thinsp;=\u0026thinsp;74)\u003c/p\u003e \u003cp\u003eRelationship to Patient:Spouses/partners accounted for the majority (89%, 82/92)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eParticipating neuro-oncology clinical sites in Australia (as part of the Care-IS randomized controlled trial).\u003c/p\u003e \u003cp\u003ePurposive sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eexploratory qualitative study with content analysis (Secondary analysis)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eContent analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eTheme 1: Carer needs\u003c/p\u003e \u003cp\u003eCarer\u0026rsquo;s emotional well-being;\u003c/p\u003e \u003cp\u003eCarer\u0026rsquo;s practical needs;\u003c/p\u003e \u003cp\u003eTheme 2: Providing emotional and practical care\u003c/p\u003e \u003cp\u003eProviding emotional care;\u003c/p\u003e \u003cp\u003eProviding practical care;\u003c/p\u003e \u003cp\u003enderstanding and accessing available support;\u003c/p\u003e \u003cp\u003eUnderstanding the treatment process;\u003c/p\u003e \u003cp\u003eTheme 3: Coping with uncertainty\u003c/p\u003e \u003cp\u003eUncertainty about illness progression, prognosis, and support needs\u003c/p\u003e \u003cp\u003eTheme 4: Coping with the consequences of illness progression\u003c/p\u003e \u003cp\u003ePhysical consequences;\u003c/p\u003e \u003cp\u003ePsychological consequences;\u003c/p\u003e \u003cp\u003eInterpersonal consequences;\u003c/p\u003e \u003cp\u003eTheme 5: Processing and supporting end-of-life care\u003c/p\u003e \u003cp\u003eUnderstanding late-stage illness, coping with impending death, discussing death with the patient\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMcDougall\u003c/p\u003e \u003cp\u003e2025[55]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAustraliaand Denmark\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003ePrimary objective: To explore the unspoken, taboo thoughts and difficult emotions experienced by carers supporting individuals with brain tumour-related personality and behaviour changes.\u003c/p\u003e \u003cp\u003eSecondary objective: To examine the coping strategies used by these carers.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: Primary malignant brain tumour (PMBT), including glioblastoma (12 cases), astrocytoma (1 case), oligodendroglioma (1 case); tumour grade III (6 cases) and IV (8 cases).\u003c/p\u003e \u003cp\u003eAge range: Australia (mean: 55 years, range: 45\u0026ndash;65 years); Denmark (mean: 53 years, range: 44\u0026ndash;66 years).\u003c/p\u003e \u003cp\u003eGender:Were not reported in the study.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;13\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003e42\u0026ndash;68 years\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;1); Female(n\u0026thinsp;=\u0026thinsp;12)\u003c/p\u003e \u003cp\u003eRelationship to Patient:Spouses(n\u0026thinsp;=\u0026thinsp;12), sibling(n\u0026thinsp;=\u0026thinsp;1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eAustralia \u0026ndash; brain tumour organisations, Denmark \u0026ndash; neuro-oncology outpatient clinic at Copenhagen University Hospital.\u003c/p\u003e \u003cp\u003ePurposive sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003ePhenomenological Research\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eReflexive thematic analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1.Unspoken thoughts and difficult experiences\u003c/p\u003e \u003cp\u003eStaying safe\u003c/p\u003e \u003cp\u003eConflicting and complex emotionst\u003c/p\u003e \u003cp\u003eWishing for the end with grief and relief\u003c/p\u003e \u003cp\u003eExperiences of patient death and end-of-life treatment decisions\u003c/p\u003e \u003cp\u003e2.Coping strategies\u003c/p\u003e \u003cp\u003eCommitment to care\u003c/p\u003e \u003cp\u003eLife alongside carer role\u003c/p\u003e \u003cp\u003eAcceptance of circumstances\u003c/p\u003e \u003cp\u003eSelf-silencing\u003c/p\u003e \u003cp\u003eInformation seeking and safety planning\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMuasher-Kerwin\u003c/p\u003e \u003cp\u003e2025[56]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUnited\u003c/p\u003e \u003cp\u003eStates\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo investigate the perspectives of family caregivers of glioblastoma multiforme (GBM) patients, focusing on the barriers and challenges they encounter when providing care.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: Glioblastoma multiforme (GBM)\u003c/p\u003e \u003cp\u003eAge range And Gender:Were not reported in the study.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;19\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003e25\u0026ndash;78 years, average 56 years; 31.6% in 65\u0026ndash;74 age group.\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;5); Female(n\u0026thinsp;=\u0026thinsp;14)\u003c/p\u003e \u003cp\u003eRelationship to Patient: Wife (n\u0026thinsp;=\u0026thinsp;10), husband (n\u0026thinsp;=\u0026thinsp;3), daughter (n\u0026thinsp;=\u0026thinsp;3), son (n\u0026thinsp;=\u0026thinsp;1), father (n\u0026thinsp;=\u0026thinsp;1), sister (n\u0026thinsp;=\u0026thinsp;1).\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eRecruitment via national GBM organizations and local hospital groups\u003c/p\u003e \u003cp\u003esnowball sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eDescriptive qualitative study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eThematic Analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1. Overwhelming caregiver burden\u003c/p\u003e \u003cp\u003e2. Difficulties coping with the caregiver role\u003c/p\u003e \u003cp\u003e3. Gaps in caregiver support\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eZanotto\u003c/p\u003e \u003cp\u003e2025[17]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUnited\u003c/p\u003e \u003cp\u003eKingdom,United\u003c/p\u003e \u003cp\u003eStates\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo understand the informal caregivers\u0026rsquo; lived experiences of coping, support needs, and changes in relationships while caring for a family member or friend with a primary brain tumor.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: Primary brain tumor (low-grade, high-grade, unknown grade; including grade 2, 3, 4 tumors).\u003c/p\u003e \u003cp\u003eAge range: 20\u0026ndash;82 years\u003c/p\u003e \u003cp\u003eGender:Were not reported in the study.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;10\u003c/p\u003e \u003cp\u003eAge range:\u003c/p\u003e \u003cp\u003e19\u0026ndash;68 years\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;1); Female(n\u0026thinsp;=\u0026thinsp;9)\u003c/p\u003e \u003cp\u003eRelationship to Patient: Spouses/partners (n\u0026thinsp;=\u0026thinsp;3), parents (n\u0026thinsp;=\u0026thinsp;4), adult children (n\u0026thinsp;=\u0026thinsp;2), sibling (n\u0026thinsp;=\u0026thinsp;1).\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eRecruitment via social media channels of organizations supporting brain tumor patients and their families.\u003c/p\u003e \u003cp\u003ePurposive sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eInterpretative Phenomenological Analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eThematic Analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1. Exhaustion and all-consuming role\u003c/p\u003e \u003cp\u003e2. Experiencing rupture and loss\u003c/p\u003e \u003cp\u003e3. Togetherness and isolation\u003c/p\u003e \u003cp\u003e4. Navigating healthcare and lack of support\u003c/p\u003e \u003cp\u003e5. Anticipating grief\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNeander\u003c/p\u003e \u003cp\u003e2025[57]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSweden\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo investigate relatives\u0026rsquo; experiences of living close to an adult with low-grade glioma (LGG, grade 2) and explore how the disease impacts daily life and the relationship with the patient over time through repeated interviews.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eType of intracranial tumor: Low-grade glioma (grade 2), including astrocytoma II, oligodendroglioma II-III, oligoastrocytoma II; some with no histology data.\u003c/p\u003e \u003cp\u003eAge range And Gender:Were not reported in the study.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSample Size: N\u0026thinsp;=\u0026thinsp;15\u003c/p\u003e \u003cp\u003eAverage age: 47 years\u003c/p\u003e \u003cp\u003eGender:Male(n\u0026thinsp;=\u0026thinsp;6); Female(n\u0026thinsp;=\u0026thinsp;9)\u003c/p\u003e \u003cp\u003eRelationship to Patient: Spouse/partner (n\u0026thinsp;=\u0026thinsp;11), parents (n\u0026thinsp;=\u0026thinsp;2), siblings (n\u0026thinsp;=\u0026thinsp;2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePatients with LGG (diagnosed 2004\u0026ndash;2005) participating in a longitudinal study were asked to select relatives for the research.\u003c/p\u003e \u003cp\u003ePurposive sampling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eDescriptive qualitative study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eThematic Analysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1.A scary and mysterious disease\u003c/p\u003e \u003cp\u003e2.A new set of priorities\u003c/p\u003e \u003cp\u003e3.An altered relationship due to a stealthy chang\u003c/p\u003e \u003cp\u003ee in the patient\u003c/p\u003e \u003cp\u003e4.A long and lonely road\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eQuality of the included studies\u003c/h2\u003e \u003cp\u003eOverall, the included studies demonstrated sound methodological quality across multiple key dimensions. All studies clearly stated their research aims and employed qualitative methodologies and appropriate research designs that aligned with their research questions. The data collection processes were consistently reported as appropriate and well-documented, and ethical considerations were explicitly addressed in all studies. Regarding findings and research value, all studies presented their results clearly with supporting evidence and were assessed as contributing value to either practice or the research field.The appraisal also identified areas for potential improvement. Transparency in participant recruitment strategy was insufficiently described in several studies[42,45,46,49,50,52,54]. A number of studies did not adequately discuss the researcher-participant relationship and potential issues of reflexivity (rated as \"NO\" [42,45,49,54]; rated as \"Can't Tell\"[47][16,17,44,46\u0026ndash;48,53,56]). Additionally, the rigor of the data analysis process was not described in sufficient detail in a few studies[42,44\u0026ndash;46]. (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eCritical appraisal skills programme (CASP) checklist for included articles.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"11\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c9\" colnum=\"9\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c10\" colnum=\"10\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c11\" colnum=\"11\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eArticles\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1. Was there a clear statement of the aims of the research?\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2. Is a qualitative methodology appropriate?\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3. Was the research design appropriate to address the aims of the research?\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003e4. Was the recruitment strategy appropriate to the aims of the research?\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003e5. Was the data collected in a way that addressed the research issue?\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003e6. Has the relationship between researcher and participants been adequately considered?\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c8\"\u003e \u003cp\u003e7. Have ethical issues been taken into consideration?\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c9\"\u003e \u003cp\u003e8. Was the data analysis sufficiently rigorous?\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c10\"\u003e \u003cp\u003e9. Is there a clear statement of findings?\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c11\"\u003e \u003cp\u003e10. Is the research valuable?\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSchmer etal.(2008)[42]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eNO\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSchubart etal.(2008)[43]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMcConigley etal.(2010)[44]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTastan etal.(2011)[45]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eNO\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eShortman etal.(2013)[46]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCollins etal.(2014)[47]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCoolbrandt etal.(2015)[48]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePiil etal.(2018)[49]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eNO\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFrancis etal.(2020)[50]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eKirby etal.(2022)[51]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFrancis etal.(2022)[52]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSayal etal.(2023)[53]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRimmer etal.(2024)[16]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eClarke etal.(2024)[54]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eNO\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMcDougall etal.(2025)[55]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMuasher-Kerwin etal.(2025)[56]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eZanotto etal.(2025)[17]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eNM\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNeander etal.(2025)[57]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"11\"\u003eNM\u0026thinsp;=\u0026thinsp;Not Mentioned\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eJourney Map Construction\u003c/h2\u003e \u003cp\u003eJourney maps typically consist of a horizontal axis (timeline) and vertical axes (dimensions of activities)[58]. In this study, the horizontal axis represents the various stages and touchpoints in the caregiving journey for intracranial tumor caregivers. The vertical axes were constructed based on the research objectives, encompassing the tasks, emotions, pain points, opportunities, and stakeholders involved in the caregiving journey for intracranial tumor patients. Figure\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e illustrates the full disease-course experience journey of caregivers for patients with intracranial tumors. This map was constructed based on the thematic synthesis results of the 18 included qualitative studies. Through systematic review and inductive analysis, we identified six consecutive stages in the caregiver journey from screening and diagnosis to bereavement and reconstruction: the screening and diagnosis phase, perioperative period, continuation treatment phase, disease progression phase, end-of-life care phase, and the bereavement and reconstruction phase. This stage division closely aligns with the key clinical turning points in the trajectory of intracranial tumors and the evolution of caregiving tasks. Furthermore, this journey map not only provides healthcare professionals with an evidence-based reference that is both broadly applicable and context-specific but also serves as an integrated, structured visual tool. This facilitates the implementation of stage-sensitive assessments and targeted support in clinical practice.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eScreening and Diagnosis Phase\u003c/h2\u003e \u003cp\u003eThe screening and diagnosis phase marks the initial stage of the caregiver's journey, characterized predominantly by intense emotional upheaval and a high demand for information processing. Upon receiving the diagnosis, caregivers commonly experience shock, fear, and helplessness, often accompanied by recurring questions of \"why us\" [42,45,46]. Non-empathetic medical communication can exacerbate emotional distress, potentially causing secondary psychological trauma[45,48]. In response to this crisis, caregivers typically engage swiftly in a series of critical tasks: accompanying the patient to medical appointments, organizing medical history, comprehending medical information, seeking second opinions, and undertaking the difficult task of explaining the condition to other family members. During this process, they frequently face ethical dilemmas between \"protecting the patient\" and \"disclosing the full truth\" [42,44]. Some caregivers may choose to temporarily withhold the diagnosis from the patient to buffer the emotional impact[42].The core pain points in this phase center on caregivers' often unmet needs for clear diagnostic information, decision-making support, guidance on role transition, and early psychological support[45]. The abrupt role shift and emerging financial pressures intensify their confusion and burden. Feelings of weakened social connections and interrupted future plans are particularly pronounced[43,48].Consequently, key intervention opportunities in this stage lie in the healthcare system proactively providing clear and empathetic diagnostic communication and promptly referring caregivers to psychological support networks and financial aid services. This approach aims to establish a starting point for the long-term caregiving journey that is equipped with resources and emotional support, thereby mitigating the psychosocial risks during this critical period of role transition [42,45].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003ePerioperative Period\u003c/h2\u003e \u003cp\u003eThe perioperative period signifies a fundamental shift in the caregiver's role identity, transitioning from an auxiliary decision-maker to the primary responsible party undertaking practical caregiving tasks. During this phase, caregivers are required to participate in surgical decision-making, sign informed consent forms, coordinate hospitalization logistics, and begin learning postoperative care knowledge and rehabilitation skills[45,54].Upon first seeing the patient after surgery, caregivers' emotions often oscillate between relief and uneasiness: comforted by the patient's survival yet potentially shocked by changes in their appearance or condition. This moment also marks the beginning of their awareness that the surgery may result in irreversible neurological deficits, triggering anxiety about long-term rehabilitation[45]. In terms of actions, caregivers focus on providing emotional support during hospitalization, assisting with early rehabilitation, advocating for the patient's rights, and maintaining close communication with the medical team[43].The core pain points in this stage lie in the caregivers' common lack of sufficient care-related knowledge and skills, and inadequate information regarding the surgery and postoperative care. They simultaneously endure significant psychological and role-related stress, alongside markedly increased time and financial burdens[43,52].Corresponding support opportunities include: systematically providing caregivers with education and training related to surgery and nursing to enhance their caregiving capacity; offering psychological support to alleviate emotional distress; and tangibly reducing their multifaceted burdens by coordinating in-home assistance, facilitating flexible work arrangements, providing financial subsidies, and maintaining open communication channels with the healthcare team[45,54].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eContinuation Treatment Phase\u003c/h2\u003e \u003cp\u003eThe continuation treatment phase signifies the caregiver's entry into a phase of long-term management, characterized by the routinization and increasing complexity of care work. During this stage, the caregiver's core tasks shift towards managing treatment side effects, supervising medication adherence, arranging and accompanying follow-up visits, and striving to adapt to new family roles and divisions of labor while undertaking substantial daily care[44,50].Caregiver behavior manifests as a multi-layered coping system: systematically managing daily affairs such as transportation, meals, and work at the life-management level; directly handling disease- or treatment-induced behavioral and cognitive changes at the clinical-coping level; and actively seeking and integrating external support at the resource-coordination level. Notably, to maintain the stability of the care system, caregivers frequently suppress their own emotions, which has become a significant psychological and behavioral characteristic[44,48].Prolonged stress and role burden trigger distinct emotional responses, including fatigue stemming from physical and mental exhaustion, loneliness due to reduced social interaction and a lack of understanding, and the alternating feelings of hope and frustration amidst fluctuating clinical conditions, often accompanied by guilt and self-doubt[16,48].These challenges reflect the core pain points of this stage: caregivers commonly experience insufficient caregiving capacity, particularly in managing neurocognitive and behavioral symptoms[47]; their social support networks are weak, and their own health is severely neglected[50]; furthermore, persistent financial and occupational pressures constitute a significant real-world burden[43].Corresponding support opportunities include: constructing a professionalized support system, such as developing individualized care plans and forming multidisciplinary teams[54]; providing substantive assistance like respite care, household help, and financial and workplace support; establishing an ongoing psychological support network through means such as support groups; and actively guiding and encouraging caregivers to engage in necessary self-care[50,53].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eDisease Progression Phase\u003c/h2\u003e \u003cp\u003eThe disease progression period represents a challenging transitional stage in the caregiver's journey, characterized by significant deterioration in the patient's condition and a fundamental shift in caregiving goals. During this phase, the caregiver's tasks become exceptionally burdensome and complex, primarily involving participation in palliative care decision-making, closely monitoring and managing symptom exacerbations, promptly adjusting care plans, and coordinating multidisciplinary medical and care resources[51,54].Caregivers face markedly increased intensity and complexity in care provision. They must not only respond to rapidly evolving clinical changes but also strive to manage more challenging neurobehavioral symptoms, such as aggressive behaviors, which may even lead caregivers to feel as though they are in a \"domestic violence relationship\"[55]. This series of challenges triggers profound and complex emotional responses: pervasive grief and despair, fear and anxiety about the patient's impending death, and, due to prolonged high stress, physical and emotional exhaustion. Caregivers may develop thoughts wishing for the patient's \"early release,\" which conflict with their ethical role, causing intense emotional self-reproach and placing their emotions in a state of contradiction and conflict during this phase[47,55]. The cumulative physical and psychological burden on caregivers gradually peaks in this stage, manifesting in significant somatic symptoms[49].The core pain points of this stage are concentrated in the following areas: the economic burden stemming from long-term care further diminishes the caregiver's coping capacity[54]; a lack of systematic and continuous psychological support resources exacerbates emotional exhaustion[49]; and caregivers endure immense physical and psychological pressure at critical medical decision-making junctures, such as palliative care transitions[56].Corresponding support opportunities should include: promoting early palliative care intervention to optimize symptom management and care goals[47]; providing caregivers with continuous psychological support and necessary financial assistance[53]; and enhancing the role of care coordinators to systematically alleviate the burden of care management for caregivers[54].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eEnd-of-Life Care Phase\u003c/h2\u003e \u003cp\u003eThe end-of-life care phase marks a fundamental transformation in the caregiver's role, with the core objective shifting from a treatment-centric focus on prolonging life to a patient-centric commitment to ensuring comfort and dignity during the final stage of life. In this terminal phase, the caregiver's central tasks concentrate on providing comprehensive comfort care, making difficult decisions regarding the limits of treatment, and offering continuous presence and support through the final farewells[49,54].Specific behaviors include delivering close bedside care, facilitating crucial conversations\u0026mdash;such as assisting the patient in expressing final wishes or completing advance care planning documents through guided communication\u0026mdash;, communicating with the medical team to discontinue aggressive interventions, coordinating various hospice services, and potentially seeking spiritual support or arranging religious rituals to provide solace for both the patient and the caregiver[46,51].This process is accompanied by an exceptionally complex wave of emotions: intense sorrow and grief form the predominant tone, interwoven with guilt over decisions made, and a sense of relief at the end of suffering following prolonged exhaustion[49,51].The core pain points of this stage lie in the immense decisional pressure concerning critical issues such as life support[55] and the dual emotional burden caregivers must shoulder\u0026mdash;managing their own profound grief while also navigating additional strains arising from family dynamics[49].Corresponding support opportunities should focus on providing systematic humane care, including the early introduction of professional hospice services[49]; offering clear guidance on end-of-life decision-making and sustained psychological support for caregivers[54]; providing spiritual care; and proactively initiating bereavement support to prepare caregivers for a smoother transition into the subsequent phase of loss[53].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eBereavement and Reconstruction Phase\u003c/h2\u003e \u003cp\u003eThe bereavement and reconstruction period signifies the prolonged process through which the caregiver, following the patient's death, transitions from the role of caregiver to that of a mourner and ultimately attempts to reintegrate into social life. The core tasks of this stage include processing and integrating complex grief, arranging funerals and posthumous matters, replanning personal life in the reality of loss, and actively seeking necessary psychological and social support [49,53].The death of the loved one signifies that the anticipatory grief long carried by the bereaved person materializes from a state of suspended psychological preparation into the lived experience of loss and an ongoing mourning process[17]. The mourning of the bereaved exhibits a composite structure: their grief is directed not only towards the deceased loved one but also extends to the loss of their own social identity attached to that relationship, such as being a spouse or parent, and the shared life vision that was co-constructed within that relationship but vanished with the disease progression [50,55].Their behaviors show a progressive shift from mourning to reconstruction, typically including participation in farewell rituals, sorting through belongings to process emotional attachments, seeking psychological counseling or joining bereavement support groups to channel emotions, and gradually resuming social and occupational activities to rebuild life order and achieve financial autonomy [46,51,53].This stage is accompanied by contradictory and dynamic emotional changes: initial intense sorrow and longing are often followed by feelings of relief and release due to the lifting of caregiving pressures, which may then give way to loneliness and identity crisis stemming from the sudden void in life[17,49]. Finally, through gradual adjustment, some individuals may begin to rediscover hope for the future, experiencing a sense of \"rebirth\"[46,51].The core pain points of this stage lie in the general lack of systematic grief support systems within society, leading to unaddressed emotional trauma for many[53]. Individuals who have lost their caregiving role face severe challenges in life reconstruction and identity crisis, which to some extent exacerbates social isolation[17]. Furthermore, the financial pressures accumulated from long-term treatment and care during the patient's life often persist after their death in forms such as outstanding debts, further intensifying the difficulties faced during this transitional phase[49].Therefore, key support opportunities involve building a continuous support system, including providing professional grief counseling and bereavement support groups[53]; assisting in developing personalized life reconstruction plans and offering re-employment guidance to facilitate social reintegration[49]; encouraging the participation of the bereaved in community activities to rebuild social connections and mitigate isolation; and ensuring the accessibility of long-term, professional psychological services for the early identification and intervention of potential prolonged grief disorder[17].\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eConstruction of the Intracranial Tumor Caregiver Journey Map and its Implications for the Support System\u003c/h2\u003e \u003cp\u003eThis study innovatively constructed a comprehensive and coherent journey map for family caregivers of patients with intracranial tumors through the systematic synthesis of qualitative evidence. Distinct from previous research that often focused on isolated stages or single dimensions[59], this map clearly demonstrates that caregiver experience constitutes an integrated trajectory profoundly intertwined with the medical progression of the disease, characterized by an inherent stage-wise regularity and dynamic evolution. The delineated stages\u0026mdash;from the screening and diagnosis phase, perioperative period, continuation treatment phase, disease progression phase, and end-of-life care phase to the bereavement and reconstruction phase\u0026mdash;are not merely a simple chronological sequence. Instead, they are demarcated based on critical transition points where the caregiver's core tasks, dominant emotions, and support needs undergo fundamental shifts.Furthermore, the journey map reveals the strong dynamism and non-linear nature of this trajectory. The caregiver's experience does not represent a unidirectional, smooth transition but rather involves recurrences and overlappings of challenges and emotions. The construction of this journey map acknowledges the uniqueness of each stage, thereby providing targeted objectives for stage-specific, precise support interventions. Simultaneously, it emphasizes the interconnectedness and evolution between stages, suggesting that the support system should possess sufficient flexibility and continuity to respond to the inherent uncertainties in the caregiver's journey.This journey map transforms fragmented qualitative insights into an orderly navigational chart. It enables healthcare professionals, policymakers, and caregivers themselves to shift from a mode of reactive coping to one of proactive planning, representing a crucial step towards establishing a caregiver-centered support system.Moreover, this study transcends limitations related to specific age groups or caregiver roles. Compared to the research by Rolfe et al. (2025) [60], which focused on a narrower caregiver demographic (e.g., parents), the present study encompasses a broader range of caregivers, including those in various family and social roles. This broader scope allows for a more comprehensive reflection of both the commonalities and differences in caregiver experiences across different disease stages, patient ages, family structures, and cultural backgrounds, thereby advancing the development of personalized, whole-cycle care systems.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003eJourney Map-Oriented Nursing Practice: The Role Positioning and Support Pathways of Nurses in Whole-Course Care\u003c/h2\u003e \u003cp\u003eBased on the constructed intracranial tumor caregiver journey map, this study identifies key support opportunities at each stage, which provide clear intervention directions for nursing practice. As core members of the care team, nurses play a pivotal role throughout the caregiver's journey. They must fulfill diverse and continuous professional responsibilities tailored to the characteristics and needs of different stages, thereby facilitating a paradigm shift from reactive response to proactive support.\u003c/p\u003e \u003cp\u003eDuring the screening and diagnosis phase, caregivers face information overload and emotional shock. The core responsibility of nurses at this stage is to provide emotional support and serve as an information bridge for caregivers. A specialized nurse coordinator, who possesses extensive experience in oncology nursing and has received targeted communication skills training, should establish a trusting relationship with the caregivers of patients with intracranial tumors[61]. This coordinator would undertake key communication tasks, assess caregiver needs and coping strategies, and provide emotional support. A three-arm randomized controlled trial (RCT) led by Boele et al. [62] demonstrated that a nurse-led emotional support model significantly alleviates psychological distress in these caregivers. Simultaneously, acting as a bidirectional communication bridge, the coordinator can accurately and timely convey the concerns and demands of patients and their families to the healthcare team. This ensures the holistic coordination of subsequent treatment and follow-up, maintaining synchronized information flow.\u003c/p\u003e \u003cp\u003eWhen caregivers enter the critical transitional perioperative period, it signifies that they begin undertaking specific and demanding caregiving tasks. At this stage, the core responsibility of nurses is to act as educators and enablers, providing essential surgical knowledge and skill support, guiding caregivers to effectively fulfill their roles, and thereby enabling their more active participation in the rehabilitation process. Nurses should offer structured perioperative education to caregivers, covering key topics such as surgical procedures, preoperative skin preparation, postoperative wound care, pain management, and complication recognition[63]. Through systematic training, this approach tangibly enhances caregivers' caregiving competency and confidence, which can effectively reduce patient hospital stays and minimize complication rates, consequently alleviating the caregiving burden.\u003c/p\u003e \u003cp\u003eUpon entering the continuation treatment phase, caregiving work becomes increasingly routinized yet highly complex. In this stage, the nurse's role expands to that of a long-term manager and support coordinator. On one hand, nurses can provide educational programs for caregivers of patients with intracranial tumors, covering topics such as managing disease-specific symptoms (e.g., tumor-related epilepsy) and strategies for addressing cognitive changes[64]. On the other hand, nurses can proactively assume the role of coordinator for the caregiver support network. This involves assisting in organizing peer support activities for caregivers[65], facilitating experience sharing and emotional mutual aid to alleviate their sense of isolation.Simultaneously, nurses should integrate the caregiver's own health status into routine assessment and intervention protocols. By utilizing approaches such as psychoeducation, mindfulness-based interventions, and cognitive-behavioral therapy-based strategies to enhance caregiver resilience[66], they can systematically safeguard the overall well-being of caregivers, thereby effectively preventing the deterioration of their physical and mental health.\u003c/p\u003e \u003cp\u003eWhen the patient's condition enters the disease progression phase, its core feature is the definitive deterioration of the disease state. As a transition between continuation treatment and palliative care, caregivers often face a heavy care burden and decisional dilemmas due to a lack of understanding and psychological preparedness for the trajectory of disease worsening[67]. In this stage, the nurse's role further expands and deepens. Building upon enhancing caregiver resilience, the nurse also acts as a facilitator for Advance Care Planning (ACP) and decisional support. This involves assisting patients, families, and the healthcare team in communicating about treatment goals and the impending transition to an end-of-life state, thereby promoting the discussion and implementation of hospice and palliative care plans[68].\u003c/p\u003e \u003cp\u003eDuring the end-of-life care phase, due to impaired decision-making capacity resulting from neurocognitive deficits, the goal of terminal care shifts to enhancing the quality of a dignified death for the patient. The key lies in improving caregivers' satisfaction with the care process and avoiding unnecessary transitions in the care setting, thereby ensuring the continuity and stability of hospice and palliative care[69]. In this phase, the core role of nurses transforms into that of practitioners of comfort care and providers of humane support. A crucial responsibility is to actively collaborate with caregivers to clarify care goals and treatment preferences based on the values held by both the patient with an intracranial tumor and their caregiver, in order to develop a personalized hospice care plan[70]. Furthermore, assisting families in implementing Advance Care Planning (ACP) programs during the end-of-life phase[71] helps deliver targeted nursing care aligned with caregivers' needs, thereby reducing hospitalization rates and avoiding unnecessary aggressive interventions at the end of life.\u003c/p\u003e \u003cp\u003eFinally, in the bereavement and reconstruction phase, the nurse's role transforms into that of a grief companion and facilitator of social reintegration. Nursing support does not terminate with the patient's death. Nurses can conduct ongoing follow-ups through various means such as phone calls and letters[72]to assess the bereaved individual's grief response. They can utilize self-report tools for standardized risk screening to identify caregivers experiencing prolonged or complicated grief disorder[73], providing initial grief counseling or referring them to professional psychological services or support groups[74]. Furthermore, nurses can offer telehealth support services to provide information and guidance on life reconstruction for caregivers of patients with intracranial tumors[75]. They can encourage the gradual resumption of social activities, the rebuilding of social networks, and the search for new life meaning and identity[76], thereby facilitating a smooth transition out of the caregiver role.\u003c/p\u003e \u003cp\u003eThe caregiving journey for individuals with intracranial tumors is fraught with challenges and is inherently dynamic. Nurses should establish a core philosophy of whole-course management in their practice. Guided by the journey map, they must flexibly assume multiple roles across different stages\u0026mdash;such as educator, coordinator, manager, advocate, carer, and companion. By providing continuous, proactive, professional, and humanistic support, nurses can effectively empower caregivers and help construct a family-centered, integrated care support system throughout the entire trajectory. This is not only crucial for enhancing caregiver well-being but also represents a vital component in achieving high-quality, comprehensive management of intracranial tumors.\u003c/p\u003e \u003cp\u003e \u003cb\u003eBuilding a Dynamic and Precision Support System: A Clinical Intervention Framework and Practical Translation Based on the Journey Map\u003c/b\u003e \u003c/p\u003e \u003cp\u003eThe journey map constructed in this study goes beyond systematically identifying the burdens and challenges faced by caregivers throughout the entire trajectory[77]; it also represents a paradigm shift from problem description to framework construction. By employing the journey map as a structural framework, it integrates key junctures in neuro-oncological diagnosis and treatment. The core principles are whole-course coverage, precision intervention, and dynamic adjustment.At stages including the screening and diagnosis phase, perioperative period, continuation treatment phase, disease progression phase, and bereavement and reconstruction phase, standardized tools should be used to proactively assess caregivers' level of information comprehension and social support status[78], implementing a model of proactive and preventive care rather than reactive care. By measuring the supportive care needs of caregivers for patients with intracranial tumors at each stage of the journey[79,80], telehealth platforms[81] can be leveraged to precisely deliver personalized information and skill guidance, ensuring the accessibility of specialized services.Furthermore, integrating caregiver mental health\u0026mdash;a significant public health concern\u0026mdash;into the clinical care pathway is a crucial step[82]. This involves conducting psychological screening at different stages[83] to assess the degree of caregiver psychological distress[84], and establishing a stepped-care intervention model. This model ranges from mental health education and structured peer support groups to providing professional psychological counseling for caregivers experiencing severe distress.Actively promoting a multidisciplinary service and care model that includes clinicians, neuro-oncology specialist nurses, psychologists, general practitioners, and others[85] is essential. Establishing electronic health records for patients and their caregivers to document their personalized needs, actively linking medical, community, and charitable resources, and formulating individualized support plans are recommended. These measures ensure information continuity and care coordination across different healthcare institutions and community services, providing caregivers with a sustainable mechanism of support.\u003c/p\u003e \u003cp\u003eBased on the integrated support framework derived from the journey map, previously fragmented and reactive services are reconfigured into a proactive, dynamic, and multidimensional continuum of support. This enables intervention measures not only to be precisely targeted at specific stages of the caregiver's journey but also to achieve macro-level dynamic calibration. Consequently, it offers a valuable reference for implementing a family-centered care model in clinical practice.\u003c/p\u003e \u003cp\u003e5.4 Directions for Healthcare Policy and Educational System Reform\u003c/p\u003e \u003cp\u003eThe caregiver journey map constructed in this study and the core challenges it reveals go beyond a mere description of phenomena; they also provide a reference point for reforming healthcare service systems and educational directions. While undertaking arduous caregiving tasks, the health and well-being needs of caregivers for patients with intracranial tumors often lack systematic attention and support within the healthcare system. Therefore, targeted reforms at the policy and educational levels are urgently needed.For diseases such as intracranial tumors, characterized by a long course, prominent neuropsychiatric symptoms, and complex decision-making, caregivers are not only assistants in daily living but also crucial participants in medical decisions and close observers of symptoms. Consequently, at the healthcare policy level, it is necessary to promote a shift from a patient-centered care model[86] towards a care model that encompasses caregivers[87]. Health systems should actively foster a diversified research funding landscape involving governments, markets, international organizations, and civil society institutions, providing financial support, expanding insurance coverage, or establishing special funds for assistance[88]. This would alleviate the economic burden on families and ensure the sustainability of support services.Simultaneously, efforts should be made to establish cross-sectoral collaborative networks that integrate resources from healthcare, rehabilitation, social security, civil affairs, and community organizations. This would provide \"one-stop\" services for families affected by intracranial tumors, with care coordinators responsible for service linkage and needs follow-up.At the educational level, governments need to allocate dedicated funding and incentives to incorporate knowledge and skills for identifying and supporting caregivers into the core curriculum and continuing professional development for healthcare professionals. This includes strengthening training on family care for chronic critical illnesses, effective communication with caregivers, and cultivating awareness and competence among future healthcare professionals to adopt a care model inclusive of caregivers. The goal is to fundamentally recognize caregivers as indispensable partners within the healthcare team.\u003c/p\u003e \u003cp\u003eIn summary, translating the insights from the journey map into tangible action necessitates a move in clinical practice towards greater refinement and pathway development. More critically, it requires a systemic and supportive restructuring of both policy and educational systems. Through this dual-track advancement\u0026mdash;integrating clinical and policy initiatives\u0026mdash;we can work to change the predicament faced by caregivers of patients with intracranial tumors and build a healthcare and social care system capable of providing sustainable support and enhancing their resilience.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section2\"\u003e \u003ch2\u003eLimitations of this study\u003c/h2\u003e \u003cp\u003eThis study has several limitations. First, the literature search was confined to English-language databases and did not include studies published in other languages. This may introduce language and cultural bias, potentially limiting the cross-cultural applicability and generalizability of the journey map's conclusions. Second, the integrated qualitative evidence inherently possesses subjectivity. Although a systematic thematic synthesis approach and multi-researcher verification were employed, the interpretation of data and the distillation of themes may still be influenced by the researchers' standpoints and interpretive perspectives.Third, intracranial tumors are highly heterogeneous in terms of pathological type, malignancy grade, rate of disease progression, and patterns of neurological impairment. The journey map constructed in this study does not fully account for this internal heterogeneity. The included studies predominantly focused on malignant tumors, and different tumor types may lead to significant variations in caregiver experiences. Therefore, the applicability of the current map to specific intracranial tumor populations requires further validation.Fourth, there is a degree of bias in the caregiver sample structure across the included studies. Most studies predominantly involved spousal caregivers, with other perspectives being relatively underrepresented. This may result in an incomplete coverage of caregiving experiences across different family roles and social relationships.Fifth, the majority of the original studies employed a cross-sectional design, lacking longitudinal follow-up of the same caregiver cohort over time. Consequently, the stage delineation and dynamic evolution pathways within the journey map are primarily derived from the synthesis of cross-sectional evidence. The temporal continuity and authenticity of this trajectory need to be confirmed by future longitudinal studies.Finally, this study is currently at the stage of theoretical framework construction. The proposed journey map has not yet been empirically applied or its effectiveness evaluated in clinical settings. Its feasibility as a nursing practice tool, its effectiveness, and its actual impact on improving caregiver outcomes require verification through subsequent interventional research.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study, through the systematic synthesis of existing qualitative evidence, constructed a six-stage journey map for caregivers of patients with intracranial tumors. It systematically reveals the core tasks, emotional trajectories, key challenges, and support opportunities throughout the entire process from diagnosis to bereavement. This map not only provides a holistic and dynamic framework for understanding caregiver experiences but also offers an empirical foundation for clinically implementing stage-specific supportive needs assessments and multidisciplinary collaboration, delivering targeted support interventions, and optimizing continuous care services. Simultaneously, it provides insights for policymaking, the development of medical professional education, and future research. Future work is needed to validate and adapt this map across diverse cultural contexts, to develop and evaluate corresponding interventions based on it, and to promote the establishment of a care model that fully integrates caregivers. The ultimate goal is to enhance the overall quality of care and the well-being of both patients with intracranial tumors and their families.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eClinical trial number\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFN: Conceptualization; Data curation; Formal analysis; Methodology; Project\u003c/p\u003e\n\u003cp\u003eadministration; Software; Supervision; Validation; Visualization; Roles/Writing - original draft.YL: Project administration; Resources; Software; Supervision.XTZ: Project administration; Resources; Software; Supervision.HS: Screening and extract the document.JNF: Screening and extract the document.APW: Conceptualization; review \u0026amp; editing.All authors are involved in drafting the manuscript or revising it critically for important intellectual content and agreed on the final version.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eMiller KD, Ostrom QT, Kruchko C, Patil N, Tihan T, Cioffi G, et al. Brain and other central nervous system tumor statistics, 2021. CA Cancer J Clin 2021;71:381\u0026ndash;406. https://doi.org/10.3322/caac.21693.\u003c/li\u003e\n\u003cli\u003eM P, Cap B, Jr B, C K, Js B-S, Qt O. CBTRUS Statistical Report: Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2018-2022. Neuro-Oncology 2025;27. https://doi.org/10.1093/neuonc/noaf194.\u003c/li\u003e\n\u003cli\u003eZhou J, Gu L, Du F, Li C, Zhang F, Zhang X, et al. The global, regional, and national brain and CNS cancers burden and trends from 1990 to 2021. Sci Rep 2025;15:19228. https://doi.org/10.1038/s41598-025-04636-7.\u003c/li\u003e\n\u003cli\u003ePhilip J, Collins A, Panozzo S, Staker J, Murphy M. Mapping the nature of distress raised by patients with high-grade glioma and their family caregivers: a descriptive longitudinal study. Neuro-Oncol Pract 2020;7:103\u0026ndash;10. https://doi.org/10.1093/nop/npz032.\u003c/li\u003e\n\u003cli\u003eZamanipoor Najafabadi AH, van der Meer PB, Boele FW, Taphoorn MJB, Klein M, Peerdeman SM, et al. Long-Term Disease Burden and Survivorship Issues After Surgery and Radiotherapy of Intracranial Meningioma Patients. Neurosurgery 2020;88:155\u0026ndash;64. https://doi.org/10.1093/neuros/nyaa351.\u003c/li\u003e\n\u003cli\u003eLion KM, Jamieson A, Billin A, Jones S, Pinkham MB, Ownsworth T. \u0026ldquo;It was never about me\u0026rdquo;: A qualitative inquiry into the experiences of psychological support and perceived support needs of family caregivers of people with high-grade glioma. Palliat Med 2024;38:874\u0026ndash;83. https://doi.org/10.1177/02692163241261211.\u003c/li\u003e\n\u003cli\u003eLiu H, Ju M, Wu L, Wu C. Role Transition Experiences in Family Caregivers of Glioma Patients: A Meta-Synthesis of Qualitative Research. Psychooncology 2025;34:e70301. https://doi.org/10.1002/pon.70301.\u003c/li\u003e\n\u003cli\u003eChen D, Zhu J, Xu Q, Wang F, Ji C, Di H, et al. The role of informal caregivers for patients with glioma: a systematic review and meta-synthesis of qualitative studies. Ann Transl Med 2021;9:1020\u0026ndash;1020. https://doi.org/10.21037/atm-21-2761.\u003c/li\u003e\n\u003cli\u003eSakurada K, Sato I, Ikeda M, Narita Y. Mental health status and associated factors of caregivers of patients with malignant brain tumors. J Neurooncol 2025;173:71\u0026ndash;82. https://doi.org/10.1007/s11060-025-04963-9.\u003c/li\u003e\n\u003cli\u003eBayen E, Laigle-Donadey F, Prout\u0026eacute; M, Hoang-Xuan K, Jo\u0026euml;l M-E, Delattre J-Y. The multidimensional burden of informal caregivers in primary malignant brain tumor. Support Care Cancer 2017;25:245\u0026ndash;53. https://doi.org/10.1007/s00520-016-3397-6.\u003c/li\u003e\n\u003cli\u003eChen D, Zhu J, Xu Q, Wang F, Ji C, Di H, et al. The role of informal caregivers for patients with glioma: a systematic review and meta-synthesis of qualitative studies. Ann Transl Med 2021;9:1020\u0026ndash;1020. https://doi.org/10.21037/atm-21-2761.\u003c/li\u003e\n\u003cli\u003eKarger A, Kisić A, Quente C, Klett MK, Sch\u0026auml;fer R, Sabel M, et al. Longitudinal Psychological Distress After Malignant Brain Tumor Diagnosis: A Multilevel Analysis of Patients and Their Caregivers. Psychooncology 2025;34:e70064. https://doi.org/10.1002/pon.70064.\u003c/li\u003e\n\u003cli\u003eChen H, Zou T, Teng Z, Qin Y, Deng Y, Wu R, et al. A systematic review and meta-analysis of psychological burden in family caregivers of patients with brain tumors. Sci Rep 2025;15:39694. https://doi.org/10.1038/s41598-025-23331-1.\u003c/li\u003e\n\u003cli\u003eZamanipoor Najafabadi AH, Van Der Meer PB, Boele FW, Taphoorn MJB, Klein M, Peerdeman SM, et al. The long-term caregiver burden in World Health Organization grade I and II meningioma: It is not just the patient. Neuro-Oncol Adv 2021;3:vdaa169. https://doi.org/10.1093/noajnl/vdaa169.\u003c/li\u003e\n\u003cli\u003eForst DA, Podgurski AF, Quain KM, Landay SL, Anand M, Kaslow-Zieve E, et al. Factors associated with psychological distress in caregivers of patients with malignant gliomas. Support Care Cancer 2022;30:5811\u0026ndash;20. https://doi.org/10.1007/s00520-022-06989-5.\u003c/li\u003e\n\u003cli\u003eRimmer B, Balla M, Dutton L, Lewis J, Burns R, Gallagher P, et al. \u0026ldquo;A Constant Black Cloud\u0026rdquo;: The Emotional Impact of Informal Caregiving for Someone With a Lower-Grade Glioma. Qual Health Res 2024;34:227\u0026ndash;38. https://doi.org/10.1177/10497323231204740.\u003c/li\u003e\n\u003cli\u003eZanotto A, McVittie C, Goodall K, Ellison M. \u0026ldquo;It Is Kind of Invisible Work\u0026rdquo;: Lived Experiences of Informal Caregivers of People with a Brain Tumor. Semin Oncol Nurs 2025;41:151938. https://doi.org/10.1016/j.soncn.2025.151938.\u003c/li\u003e\n\u003cli\u003ePaterson C, Roberts C, Li J, Chapman M, Strickland K, Johnston N, et al. What are the experiences of supportive care in people affected by brain cancer and their informal caregivers: A qualitative systematic review. J Cancer Surviv 2024;18:1608\u0026ndash;29. https://doi.org/10.1007/s11764-023-01401-5.\u003c/li\u003e\n\u003cli\u003eOwnsworth T, Goadby E, Chambers SK. Support after brain tumor means different things: family caregivers\u0026rsquo; experiences of support and relationship changes. Front Oncol 2015;5:33. https://doi.org/10.3389/fonc.2015.00033.\u003c/li\u003e\n\u003cli\u003eYoung K, Cashion C, Hassall T, Ekberg S, Bradford N. Supporting families through paediatric brain tumour: Unmet needs and suggestions for change. Psychooncology 2023;32:942\u0026ndash;50. https://doi.org/10.1002/pon.6136.\u003c/li\u003e\n\u003cli\u003eHertler C, Eisele G, Gramatzki D, Seystahl K, Wolpert F, Roth P, et al. End-of-life care for glioma patients; the caregivers\u0026rsquo; perspective. J Neurooncol 2020;147:663\u0026ndash;9. https://doi.org/10.1007/s11060-020-03471-2.\u003c/li\u003e\n\u003cli\u003eKoekkoek JAF, Van Der Meer PB, Pace A, Hertler C, Harrison R, Leeper HE, et al. Palliative care and end-of-life care in adults with malignant brain tumors. Neuro-Oncol 2023;25:447\u0026ndash;56. https://doi.org/10.1093/neuonc/noac216.\u003c/li\u003e\n\u003cli\u003eForst DA, Podgurski AF, Strander SM, Whitman JD, Datta S, Pintro K, et al. NeuroCARE: A Randomized Controlled Trial of a Psychological Intervention for Caregivers of Patients With Primary Malignant Brain Tumors. J Clin Oncol 2024;42:4252\u0026ndash;62. https://doi.org/10.1200/JCO.24.00065.\u003c/li\u003e\n\u003cli\u003eCiria-Suarez L, Jim\u0026eacute;nez-Fonseca P, Palac\u0026iacute;n-Lois M, Anto\u0026ntilde;anzas-Basa M, Fern\u0026aacute;ndez-Montes A, Manzano-Fern\u0026aacute;ndez A, et al. Breast cancer patient experiences through a journey map: A qualitative study. PLOS One 2021;16:e0257680. https://doi.org/10.1371/journal.pone.0257680.\u003c/li\u003e\n\u003cli\u003eYao Y, He T, Tian X. The Experience of Patients with Endocrine Therapy for Breast Cancer: A Patient Journey Map Based on Qualitative Research. Curr Oncol 2024;31:5873\u0026ndash;88. https://doi.org/10.3390/curroncol31100437.\u003c/li\u003e\n\u003cli\u003eO\u0026rsquo;Regan D, Garcia-Borreguero D, Gloggner F, Wild I, Leontiou C, Ferini-Strambi L. Mapping the insomnia patient journey in Europe and Canada. Front Public Health 2023;11:1233201. https://doi.org/10.3389/fpubh.2023.1233201.\u003c/li\u003e\n\u003cli\u003eSaragosa M, Frew M, Hahn-Goldberg S, Orchanian-Cheff A, Abrams H, Okrainec K. The Young Carers\u0026rsquo; Journey: A Systematic Review and Meta Ethnography. Int J Environ Res Public Health 2022;19:5826. https://doi.org/10.3390/ijerph19105826.\u003c/li\u003e\n\u003cli\u003eHu J, Dong G, Liu D, Wang D. A longitudinal qualitative study on the care needs journey map of primary caregivers of patients undergoing total knee arthroplasty. Front Rehabil Sci 2025;6:1623623. https://doi.org/10.3389/fresc.2025.1623623.\u003c/li\u003e\n\u003cli\u003eLv Y, Li Q, Wu J, Zhang X, Gu R, Pan Y, et al. Mapping the health management journey of women with gestational diabetes mellitus: a qualitative study. BMC Pregnancy Childbirth 2025;25:1239. https://doi.org/10.1186/s12884-025-08409-y.\u003c/li\u003e\n\u003cli\u003eHagendijk ME, Zipfel N, Oomen FJ, Hoving JL, Van Der Wees PJ, Hulshof CTJ, et al. Work-focused healthcare from the perspective of employees living with cardiovascular disease: a patient experience journey mapping study. BMC Public Health 2023;23:1765. https://doi.org/10.1186/s12889-023-16486-x.\u003c/li\u003e\n\u003cli\u003eShafei I, Karnon J, Crotty M. Process mining and customer journey mapping in healthcare: Enhancing patient-centred care in stroke rehabilitation. DIGIT HEALTH 2024;10:20552076241249264. https://doi.org/10.1177/20552076241249264.\u003c/li\u003e\n\u003cli\u003eVesinurm M, D\u0026uuml;nweber C, Rimestad J, Landtblom A, Jennum PJ. Patient experiences of narcolepsy and idiopathic hypersomnia in the Nordics: a patient journey map. J Sleep Res 2025;34:e14376. https://doi.org/10.1111/jsr.14376.\u003c/li\u003e\n\u003cli\u003eBenz C, Scott‐Jeffs W, Revitt J, Brabon C, Fermanis C, Hawkes M, et al. Co‐designing a telepractice journey map with disability customers and clinicians: Partnering with users to understand challenges from their perspective. Health Expect 2024;27:e13919. https://doi.org/10.1111/hex.13919.\u003c/li\u003e\n\u003cli\u003eHe Q, Du F, Simonse LWL. A Patient Journey Map to Improve the Home Isolation Experience of Persons With Mild COVID-19: Design Research for Service Touchpoints of Artificial Intelligence in eHealth. JMIR Med Inform 2021;9:e23238. https://doi.org/10.2196/23238.\u003c/li\u003e\n\u003cli\u003eHu J, Dong G, Liu D, Wang D. A longitudinal qualitative study on the care needs journey map of primary caregivers of patients undergoing total knee arthroplasty. Front Rehabil Sci 2025;6:1623623. https://doi.org/10.3389/fresc.2025.1623623.\u003c/li\u003e\n\u003cli\u003eZhang Z, Yang L, Cao H, Li F. The support provision and self-support journey of partners in high-risk pregnancies with comorbidities: A meta-synthesis analysis. Midwifery 2025;148:104463. https://doi.org/10.1016/j.midw.2025.104463.\u003c/li\u003e\n\u003cli\u003eTong A, Flemming K, McInnes E, Oliver S, Craig J. Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol 2012;12:181. https://doi.org/10.1186/1471-2288-12-181.\u003c/li\u003e\n\u003cli\u003ePage MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021:n71. https://doi.org/10.1136/bmj.n71.\u003c/li\u003e\n\u003cli\u003eAmir-Behghadami M, Janati A. Population, Intervention, Comparison, Outcomes and Study (PICOS) design as a framework to formulate eligibility criteria in systematic reviews. Emerg Med J 2020;37:387\u0026ndash;387. https://doi.org/10.1136/emermed-2020-209567.\u003c/li\u003e\n\u003cli\u003eNadelson S, Nadelson LS. Evidence‐Based Practice Article Reviews Using CASP Tools: A Method for Teaching EBP. Worldviews Evid Based Nurs 2014;11:344\u0026ndash;6. https://doi.org/10.1111/wvn.12059.\u003c/li\u003e\n\u003cli\u003eThomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 2008;8:45. https://doi.org/10.1186/1471-2288-8-45.\u003c/li\u003e\n\u003cli\u003eSchmer C, Ward-Smith P, Latham S, Salacz M. When a family member has a malignant brain tumor: the caregiver perspective. J Neurosci Nurs 2008;40:78\u0026ndash;84. https://doi.org/10.1097/01376517-200804000-00006.\u003c/li\u003e\n\u003cli\u003eSchubart JR, Kinzie MB, Farace E. Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro-Oncol 2008;10:61\u0026ndash;72. https://doi.org/10.1215/15228517-2007-040.\u003c/li\u003e\n\u003cli\u003eMcConigley R, Halkett G, Lobb E, Nowak A. Caring for someone with high-grade glioma: a time of rapid change for caregivers. Palliat Med 2010;24:473\u0026ndash;9. https://doi.org/10.1177/0269216309360118.\u003c/li\u003e\n\u003cli\u003eTastan S, Kose G, Iyigun E, Ayhan H, Coskun H, Hatipoglu S. Experiences of the relatives of patients undergoing cranial surgery for a brain tumor: a descriptive qualitative study. J Neurosci Nurs 2011;43:77\u0026ndash;84. https://doi.org/10.1097/jnn.0b013e31820c94da.\u003c/li\u003e\n\u003cli\u003eShortman RI, Beringer A, Penn A, Malson H, Lowis SP, Sharples PM. The experience of mothers caring for a child with a brain tumour. Child Care Health Dev 2013;39:743\u0026ndash;9. https://doi.org/10.1111/cch.12005.\u003c/li\u003e\n\u003cli\u003eCollins A, Lethborg C, Brand C, Gold M, Moore G, Sundararajan V, et al. The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practices. BMJ Support Palliat Care 2014;4:68\u0026ndash;76. https://doi.org/10.1136/bmjspcare-2012-000419.\u003c/li\u003e\n\u003cli\u003eCoolbrandt A, Sterckx W, Clement P, Borgenon S, Decruyenaere M, De Vleeschouwer S, et al. Family Caregivers of Patients With a High-Grade Glioma: A Qualitative Study of Their Lived Experience and Needs Related to Professional Care. Cancer Nurs 2015;38:406\u0026ndash;13. https://doi.org/10.1097/NCC.0000000000000216.\u003c/li\u003e\n\u003cli\u003ePiil K, Jarden M. Bereaved Caregivers to Patients With High-Grade Glioma: A Qualitative Explorative Study. J Neurosci Nurs 2018;50:94\u0026ndash;9. https://doi.org/10.1097/JNN.0000000000000348.\u003c/li\u003e\n\u003cli\u003eFrancis SR, Hall EO, Delmar C. Ethical dilemmas experienced by spouses of a partner with brain tumour. Nurs Ethics 2020;27:587\u0026ndash;97. https://doi.org/10.1177/0969733019857790.\u003c/li\u003e\n\u003cli\u003eKirby E, van Toorn G, Lwin Z. Routines of isolation? A qualitative study of informal caregiving in the context of glioma in Australia. Health Soc Care Community 2022;30:1924\u0026ndash;32. https://doi.org/10.1111/hsc.13571.\u003c/li\u003e\n\u003cli\u003eFrancis SR, Hall EOC, Delmar C. Spouse Caregivers\u0026rsquo; Experiences of Suffering in Relation to Care for a Partner With Brain Tumor: A Qualitative Study. Cancer Nurs 2022;45:E320\u0026ndash;8. https://doi.org/10.1097/NCC.0000000000000935.\u003c/li\u003e\n\u003cli\u003eSayal P, Rizakos S, Lam E, Constantin J, Diskin C, Bartels U, et al. A qualitative exploration of parental caregivers\u0026rsquo; experience caring for children who have survived medulloblastoma. Pediatr Blood Cancer 2023;70:e30534. https://doi.org/10.1002/pbc.30534.\u003c/li\u003e\n\u003cli\u003eClarke JJ, Halkett GKB, McDougall E, Dhillon HM, Lobb E, Phillips JL, et al. What do carers of people with high-grade glioma perceive could improve their preparedness to care, and what additional support do they require? Neuro-Oncology Practice 2024;11:296\u0026ndash;306. https://doi.org/10.1093/nop/npae015.\u003c/li\u003e\n\u003cli\u003eMcDougall E, Nordentoft S, Kj\u0026aelig;rgaard S, Halkett GKB, Nowak AK, Dhillon HM, et al. Unveiling the Unspoken: Exploring Taboo Thoughts and Difficult Experiences Among Carers of People With Brain Cancer. Psychooncology 2025;34:e70231. https://doi.org/10.1002/pon.70231.\u003c/li\u003e\n\u003cli\u003eMuasher-Kerwin C, Baumbach A, Liu Y, Hughes MC. \u0026ldquo;You sure feel like you\u0026rsquo;re alone, kind of flailing away out there\u0026rdquo;: Family caregiver perspectives of caring for an individual with glioblastoma multiforme. Palliat Support Care 2025;23:e62. https://doi.org/10.1017/S147895152500015X.\u003c/li\u003e\n\u003cli\u003eNeander K, Elwin M, Ek L. A long and lonely road: Relatives\u0026rsquo; experiences of living with a person diagnosed with low-grade glioma. Neuropsychol Rehabil 2026;36:61\u0026ndash;83. https://doi.org/10.1080/09602011.2025.2490151.\u003c/li\u003e\n\u003cli\u003eDavies EL, Bulto LN, Walsh A, Pollock D, Langton VM, Laing RE, et al. Reporting and conducting patient journey mapping research in healthcare: A scoping review. J Adv Nurs 2023;79:83\u0026ndash;100. https://doi.org/10.1111/jan.15479.\u003c/li\u003e\n\u003cli\u003eMeer S, Buckle P, Miller R, Murray L, Ziegler L, Piil K, et al. End-of-life care experiences and long-term outcomes of bereaved neuro-oncology caregivers: A cross-sectional survey. Palliat Med 2025;39:814\u0026ndash;26. https://doi.org/10.1177/02692163251344164.\u003c/li\u003e\n\u003cli\u003eRolfe ML, Miller E, Donkin L, Ekberg S, Bradford NK. \u0026ldquo;Still in Survival Mode\u0026rdquo;: Trauma-Mapping Parent Experiences of Pediatric Brain Tumor. Qual Health Res 2025:10497323251378297. https://doi.org/10.1177/10497323251378297.\u003c/li\u003e\n\u003cli\u003ePhilip J, Collins A, Staker J, Murphy M. I-CoPE: A pilot study of structured supportive care delivery to people with newly diagnosed high-grade glioma and their carers. Neuro-Oncol Pract 2019;6:61\u0026ndash;70. https://doi.org/10.1093/nop/npy010.\u003c/li\u003e\n\u003cli\u003eBoele FW, Weimer JM, Marsland AL, Armstrong TS, Given CW, Drappatz J, et al. The effects of SmartCare\u0026copy; on neuro-oncology family caregivers\u0026rsquo; distress: a randomized controlled trial. Support Care Cancer 2022;30:2059\u0026ndash;68. https://doi.org/10.1007/s00520-021-06555-5.\u003c/li\u003e\n\u003cli\u003eYang Y, Fu J, Fu Y, Fu J. Factors influencing caregiver burden during perioperative care for children with pediatric central nervous system tumors: an analysis of multidimensional burden and associated determinants. Front Pediatr 2025;13:1607200. https://doi.org/10.3389/fped.2025.1607200.\u003c/li\u003e\n\u003cli\u003eJones D, Pinkham MB, Wallen MP, Hart NH, Joseph R, Strodl E, et al. Benefits of supportive strategies for carers of people with high-grade glioma: a systematic review: Strategies for addressing the needs of high-grade glioma carers. Support Care Cancer 2022;30:10359\u0026ndash;78. https://doi.org/10.1007/s00520-022-07419-2.\u003c/li\u003e\n\u003cli\u003eNordentoft S, Dieperink KB, Johansson SD, Jarden M, Piil K. Evaluation of a multimodal rehabilitative palliative care programme for patients with high‐grade glioma and their family caregivers. Scand J Caring Sci 2022;36:815\u0026ndash;29. https://doi.org/10.1111/scs.13019.\u003c/li\u003e\n\u003cli\u003eChi N-C, Han S, Lin S-Y, Fu Y-K, Zhu Z, Nakad L, et al. Resilience-enhancing interventions for family caregivers: A systematic review. Chronic Illn 2024;20:199\u0026ndash;220. https://doi.org/10.1177/17423953231174928.\u003c/li\u003e\n\u003cli\u003eRapp M, Von Sass C, Backhaus C, H\u0026auml;nggi D, Kamp MA, Sabel M. Would they do it again? Final treatment decisions in malignant brain tumour patients\u0026mdash;a caregiver\u0026rsquo;s perspective. Support Care Cancer 2022;30:3985\u0026ndash;93. https://doi.org/10.1007/s00520-022-06796-y.\u003c/li\u003e\n\u003cli\u003eChien C-Y, Kuo L-T, Lin C-P. Exploring the perspectives of early-stage postoperative glioblastoma patients and their caregivers on end-of-life care planning: An exploratory qualitative interview study. Appl Nurs Res 2025;81:151897. https://doi.org/10.1016/j.apnr.2024.151897.\u003c/li\u003e\n\u003cli\u003ePace A, Dirven L, Koekkoek JAF, Golla H, Fleming J, Rud\u0026agrave; R, et al. European Association for Neuro-Oncology (EANO) guidelines for palliative care in adults with glioma. Lancet Oncol 2017;18:e330\u0026ndash;40. https://doi.org/10.1016/S1470-2045(17)30345-5.\u003c/li\u003e\n\u003cli\u003eKoekkoek JAF, Van Der Meer PB, Pace A, Hertler C, Harrison R, Leeper HE, et al. Palliative care and end-of-life care in adults with malignant brain tumors. Neuro-Oncol 2023;25:447\u0026ndash;56. https://doi.org/10.1093/neuonc/noac216.\u003c/li\u003e\n\u003cli\u003eRietjens JAC, Sudore RL, Connolly M, Van Delden JJ, Drickamer MA, Droger M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol 2017;18:e543\u0026ndash;51. https://doi.org/10.1016/S1470-2045(17)30582-X.\u003c/li\u003e\n\u003cli\u003eIto Y, Obana M, Kawakami D, Murakami N, Sakaguchi Y. The current status of bereavement follow-up in Japanese emergency departments: A cross-sectional nationwide survey. Int Emerg Nurs 2020;52:100872. https://doi.org/10.1016/j.ienj.2020.100872.\u003c/li\u003e\n\u003cli\u003eRoberts KE, Jankauskaite G, Slivjak E, Rubin L, Schachter S, Stabler S, et al. Bereavement risk screening: A pathway to psychosocial oncology care. Psychooncology 2020;29:2041\u0026ndash;7. https://doi.org/10.1002/pon.5526.\u003c/li\u003e\n\u003cli\u003eMoss SJ, Wollny K, Poulin TG, Cook DJ, Stelfox HT, Ordons ARD, et al. Bereavement interventions to support informal caregivers in the intensive care unit: a systematic review. BMC Palliat Care 2021;20:66. https://doi.org/10.1186/s12904-021-00763-w.\u003c/li\u003e\n\u003cli\u003eDionne-Odom JN, Williams GR, Warren PP, Tims S, Huang C-HS, Taylor RA, et al. Implementing a Clinic-Based Telehealth Support Service (FamilyStrong) for Family Caregivers of Individuals with Grade IV Brain Tumors. J Palliat Med 2021;24:347\u0026ndash;53. https://doi.org/10.1089/jpm.2020.0178.\u003c/li\u003e\n\u003cli\u003eDahlberg M, Bylund A, Gustavsson P, Calero TH, Wannheden C. What matters to persons living with brain tumors and their informal caregivers? An interview study of qualities in interpersonal relations. Soc Sci Med 2022;292:114575. https://doi.org/10.1016/j.socscimed.2021.114575.\u003c/li\u003e\n\u003cli\u003eAu TH, Willis C, Reblin M, Peters KB, Nghiemphu PL, Taylor JW, et al. Correction to: Caregiver burden by treatment and clinical characteristics of patients with glioblastoma. Support Care Cancer 2022;30:1377\u0026ndash;8. https://doi.org/10.1007/s00520-021-06691-y.\u003c/li\u003e\n\u003cli\u003eJames EA, Wallace MS, Chard MP, Camicia ME, Lutz BJ, Minns LA. Former Primary Caregivers of Patients With Glioblastoma Multiforme Evaluate the PATH (Preparedness Assessment for the Transition Home) Instrument. J Adv Nurs 2025;81:1583\u0026ndash;97. https://doi.org/10.1111/jan.16420.\u003c/li\u003e\n\u003cli\u003eRenovanz M, Maurer D, Lahr H, Weimann E, Deininger M, Wirtz CR, et al. Supportive Care Needs in Glioma Patients and Their Caregivers in Clinical Practice: Results of a Multicenter Cross-Sectional Study. Front Neurol 2018;9:763. https://doi.org/10.3389/fneur.2018.00763.\u003c/li\u003e\n\u003cli\u003eHalkett GKB, Lobb EA, Shaw T, Sinclair MM, Miller L, Hovey E, et al. Do carer\u0026rsquo;s levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress? Support Care Cancer 2018;26:275\u0026ndash;86. https://doi.org/10.1007/s00520-017-3846-x.\u003c/li\u003e\n\u003cli\u003eOwnsworth T, Chan RJ, Jones S, Robertson J, Pinkham MB. Use of telehealth platforms for delivering supportive care to adults with primary brain tumors and their family caregivers: A systematic review. Psychooncology 2021;30:16\u0026ndash;26. https://doi.org/10.1002/pon.5549.\u003c/li\u003e\n\u003cli\u003eZhao Y, Qiu X, Xiao Z, Kaufman MR. Trauma narratives and healing of offspring caregivers of breast cancer patients: a mixed qualitative methods study. BMC Psychol 2025;13:1395. https://doi.org/10.1186/s40359-025-03854-y.\u003c/li\u003e\n\u003cli\u003eKisić A, Klett MK, Schaefer R, Quente C, Sabel M, Rapp M, et al. Predicting Caregiver Anxiety and Depression From Patient Distress in Brain Tumor Dyads: Actor‐Partner Interdependence Model. Cancer Med 2025;14:e71271. https://doi.org/10.1002/cam4.71271.\u003c/li\u003e\n\u003cli\u003eSakurada K, Sato I, Ikeda M, Narita Y. Mental health status and associated factors of caregivers of patients with malignant brain tumors. J Neurooncol 2025;173:71\u0026ndash;82. https://doi.org/10.1007/s11060-025-04963-9.\u003c/li\u003e\n\u003cli\u003ePaterson C, Roberts C, Li J, Chapman M, Strickland K, Johnston N, et al. What are the experiences of supportive care in people affected by brain cancer and their informal caregivers: A qualitative systematic review. J Cancer Surviv 2024;18:1608\u0026ndash;29. https://doi.org/10.1007/s11764-023-01401-5.\u003c/li\u003e\n\u003cli\u003eWasim A, Sajan M, Majid U. Patient-centered care frameworks, models and approaches: An environmental scan. Patient Exp J 2023;10:14\u0026ndash;22. https://doi.org/10.35680/2372-0247.1806.\u003c/li\u003e\n\u003cli\u003eGiusti A, Pukrittayakamee P, Alarja G, Farrant L, Hunter J, Mzimkulu O, et al. Developing a global practice-based framework of person-centred care from primary data: a cross-national qualitative study with patients, caregivers and healthcare professionals. BMJ Glob Health 2022;7:e008843. https://doi.org/10.1136/bmjgh-2022-008843.\u003c/li\u003e\n\u003cli\u003eMihret MG, Worku HA, Melesse TG. Financial toxicity and associated factors among cancer patients attending public hospitals in Ethiopia. Support Care Cancer 2025;33:502. https://doi.org/10.1007/s00520-025-09592-6.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-nursing","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"nurs","sideBox":"Learn more about [BMC Nursing](http://bmcnurs.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/nurs/default.aspx","title":"BMC Nursing","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Intracranial tumors, Caregivers, Journey mapping, Systematic review","lastPublishedDoi":"10.21203/rs.3.rs-8704501/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8704501/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eObjective\u003c/h2\u003e \u003cp\u003eThis study aims to synthesize qualitative evidence to construct a journey map delineating the experiences and needs of caregivers of patients with intracranial tumors.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eA systematic literature search was conducted across six electronic databases (PubMed, Web of Science, CINAHL, EMBASE, Scopus, and PsycINFO) from their inception to December 2025, supplemented by manual searches of reference lists from relevant articles.This review focused on the lived experiences, perceptions, unmet needs, and emotional states of informal caregivers of individuals with intracranial tumors.Two researchers independently screened the literature and assessed the methodological quality of included studies using the Critical Appraisal Skills Programme tool for qualitative research.Data extraction was then performed to collate pertinent information, and thematic analysis was employed to summarize and synthesize the findings from the included studies.This qualitative systematic review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and the Enhancing Transparency in Reporting the Synthesis of Qualitative Research statement.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eThis review included 18 articles and constructed a caregiver journey map encompassing six sequential phases: screening and diagnosis phase, perioperative period, continuing treatment phase, disease progression phase, hospice care phase, and bereavement and reconstruction phase.This journey map systematically delineates the core tasks, emotional experiences, primary pain points, potential opportunity points, and relevant stakeholders for caregivers at each phase.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eThe caregiver journey map for patients with intracranial tumors developed in this study innovatively integrates the complex experiences and needs of caregivers across the entire disease trajectory in a visual and phased manner.This map provides a structured toolkit for clinical healthcare professionals, offering an evidence-based foundation for future clinical practices such as phased supportive needs assessment, multidisciplinary collaboration, implementation of precise supportive interventions, and optimization of continuous care services. Furthermore, it establishes an evidence-informed framework for healthcare and education administrators as well as policymakers to optimize resource allocation and design continuous support services.\u003c/p\u003e","manuscriptTitle":"Mapping the Uncharted Journey: Constructing a Journey Map for Caregivers of Patients with Intracranial Tumors Based on a Systematic Review of Qualitative Research","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-03-27 12:29:10","doi":"10.21203/rs.3.rs-8704501/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-04-27T21:08:50+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-04-12T18:53:33+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-04-11T12:07:21+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-04-05T14:06:51+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"66172165297919910240077958461299134619","date":"2026-04-05T09:03:39+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"237326911844755910495843844312573289159","date":"2026-04-01T13:05:59+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"323580755285169453419143607269891558619","date":"2026-03-25T08:03:33+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"94515684051705633042356764228970774475","date":"2026-03-25T07:42:28+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-03-25T07:35:04+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2026-03-02T07:57:39+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-01-29T08:41:21+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-01-29T08:36:57+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Nursing","date":"2026-01-27T01:03:04+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-nursing","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"nurs","sideBox":"Learn more about [BMC Nursing](http://bmcnurs.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/nurs/default.aspx","title":"BMC Nursing","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"62e70f0d-708a-4a8a-a493-a5f3d16f1338","owner":[],"postedDate":"March 27th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-05-16T16:53:12+00:00","versionOfRecord":[],"versionCreatedAt":"2026-03-27 12:29:10","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8704501","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8704501","identity":"rs-8704501","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}