Improving support for family caregivers in palliative care through journey mapping: a qualitative study across 19 healthcare organizations

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Hoffstädt, Leti van Bodegom-Vos, and 7 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8219975/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background / aim: Family caregivers play a crucial role in supporting and caring for patients with life-threatening diseases. Providing this care can be rewarding but can also pose a great burden on family caregivers. Therefore, support is needed to address their problems and needs. However, systematic support for family caregivers is often lacking within healthcare organizations. To bridge this gap, a Family Caregiver Journey Workshop was developed as an implementation tool to help healthcare organizations enhance structural support for family caregivers. The aim of this study was to investigate the output of this workshop and to evaluate its process . Methods: The workshop was conducted in 19 healthcare organizations (7 home care organizations, 6 hospices, 3 nursing homes, 2 hospitals, 1 transmural organization). Each organization assembled a group of healthcare professionals to conduct the workshop and develop an action plan based on its outcomes. Subsequently, a focus group with participants from different organizations was held to evaluate their experiences with the workshop. The action plans and the focus group transcript were analyzed using conventional content analysis. Results: The action plans described various goals, activities, timelines and responsibilities. Goals focused on (1) direct support for family caregivers and (2) preconditions on the team and organizational level. Planned activities for family caregivers included systemically addressing their needs and wellbeing, improving information provision, supporting their involvement in patient care, strengthening patient-caregiver relationships, and offering bereavement support. Activities at the team or organizational level included developing protocols, guidelines and tools, providing training and education, fostering interprofessional collaboration, and supporting healthcare professionals. Healthcare professionals across all healthcare settings considered the workshop a useful tool to reflect on current practices and identify concrete improvements in supporting family caregivers. Conclusion: The Family Caregiver Journey Workshop is a valuable implementation tool for healthcare professionals to reflect on their current practice of supporting family caregivers and to set targeted improvement goals. Trial registration: Open Science Framework (OSF), preregistration 2022: Supporting family caregivers during the illness and after the death of their loved one, with special attention for individual needs, health skills and culturally sensitive communication . https://osf.io/57wm9/overview Figures Figure 1 Figure 2 Contribution to the literature This study describes the use of a new implementation tool, the Family Caregiver Journey Workshop, aimed at helping healthcare organizations to provide structural support for family caregivers of patients with life-threatening diseases. The workshop is effective at identifying areas for improvement in support for family caregivers at the individual, team and organizational level. It helps healthcare teams to discuss, understand, acknowledge family caregivers’ needs and experiences, reflect on their current practice of supporting them, and to set targeted improvement goals. Introduction Family caregivers play an important role in supporting and providing care for patients with life-threatening diseases. Providing this care can be rewarding, but it can also pose a great burden on family caregivers, who can suffer from physical symptoms such as sleep problems, exhaustion, illness, and psychological symptoms such as anxiety and depression ( 1 – 4 ). With an aging population, increasing shortages in formal caregivers, and people staying at home longer, the burden on family caregivers is expected to rise in the near future ( 5 ). The impact of the patient’s disease on family caregivers can partly be explained by the different roles that family caregivers adopt when caring for their loved one. Family caregivers adopt a role as caregiver, providing practical, physical and emotional care for the patient, and as their partner, child or friend ( 6 – 8 ). Simultaneously, they are care recipients who must deal with their own feelings of grief and loss. Family caregivers should be empowered to cope and continue caring for the patient during the disease trajectory until the end of life, while also paying attention to their own wellbeing and needs. The definition of palliative care clearly states that palliative care should also aim to improve the quality of life of family caregivers ( 9 ). However, family caregivers often have unmet support needs ( 10 – 12 ). This can partially be attributed to support for family caregivers not being systematically embedded within healthcare organizations ( 13 ). Consequently, support for family caregivers depends mostly on the initiative of individual healthcare professionals. However, the focus of healthcare professionals is typically on the patient’s needs and problems. Therefore, for support to be consistently provided to family caregivers, it needs to be ingrained at the organizational level. An effective method for quality improvement of healthcare practice is ‘patient journey mapping’, which is a relatively innovative approach that provides detailed insights into the patient’s journey from initial entry to progression through the healthcare system. Patient journey mapping involves creating a visual timeline that depicts the multidimensional relation between a patient and the healthcare system. Such a visual narrative timeline can help healthcare organizations to evaluate their current practices and to decide on how they can improve their work processes so that those are as fitting to patients’ support needs as possible ( 14 , 15 ). Journey mapping has several benefits: it illustrates a patient’s pathway or process from a patient’s perspective, it can be a starting point for quality improvement, and it is an interactive event that enforces staff engagement. Such staff engagement creates a culture of ownership and a sense of responsibility within a healthcare team with regard to the areas for improvements that are brought to light during the process ( 16 ). Although the journey of a patient and the journey of his or her family caregiver(s) may overlap to a certain extent, the journey of the family caregiver has unique components following the different roles they fulfill, and the specific needs they may have during the disease trajectory (e.g. regarding information provision or involvement in the patient’s care). In addition, the journey of the family caregivers continues after the death of the patient. In this study, the patient journey mapping method was used to develop the Family Caregiver Journey Workshop as an implementation tool for healthcare professionals to 1) reflect on their current practice of supporting family caregivers and to 2) identify areas for improvement in their support for family caregivers during the patient’s disease trajectory and after their death. To our knowledge, journey mapping has not been used before as a structured method in the form of a workshop to improve the support for family caregivers. The aim of this study was twofold: 1) to investigate the output of the workshop and 1) to evaluate the process of the workshop. Materials and methods Study design and context This qualitative study was part of a larger Dutch research project called ‘Support for family caregivers’ (2017-2024) consisting of three substudies funded by the Netherlands Organisation for Health Research and Development (ZonMw: 844001312; 844001804; 844001706). The latest substudy of this project, conducted between 2021 and 2024, aimed to systematically improve support for family caregivers in different healthcare settings by implementing an organizational intervention comprising a structured practice improvement trajectory (17). The Family Caregiver Journey Workshop was developed as an implementation tool to tailor the intervention to the current practices of each participating healthcare organization. The output of the workshop consisted of action plans with organization-specific goals to improve the support for family caregivers. The Family Caregiver Journey Workshop During the Family Caregiver Journey Workshop, healthcare teams map the journey of family caregivers within their organization. This structured exercise provides insight into their current practice of supporting family caregivers during the patient’s disease trajectory and after the death, and enables them to reflect on how their practice could be improved. The workshop was developed using a design research approach (18) involving literature review, interviews with family caregivers and healthcare professionals, and co-creation sessions with healthcare professionals and the research team to ensure its relevance and usability in practice. A detailed description of the development process is described elsewhere (19). The workshop comprises of six steps which are described below. A visual overview of these steps is presented in Figure 1. Participants map the family caregiver’s journey within their organization, throughout the patient’s disease-trajectory and after their death. They use so-called ‘activity cards’ on which various activities are described that healthcare professionals can undertake to support family caregivers (e.g. ‘providing practical support’ or ‘conducting a follow-up conversation after the patient’s death’). Healthcare professionals identify which actions they currently perform and which they do not, and list the actions they usually perform in chronological order. Blank activity cards are available to add activities not covered by the set of cards. Participants establish which of family caregivers’ needs they currently sufficiently and insufficiently accommodate. They use so-called ‘needs cards’ that describe various needs of family caregivers (e.g. ‘being involved in medical decision making’ or ‘having a primary contact person’). Participants then choose 3 to 5 of family caregivers’ needs for which they feel there is room for improvement within their organization. Blank needs cards are available to add needs not covered by the set of cards. For each chosen need, participants decide where in the family caregivers’ journey (step 1) this need is currently sufficiently or insufficiently met. They do this by sticking green and pink sticky notes across the journey for each chosen need. For each pink sticky note, participants brainstorm on how this specific need could be better accommodated and write their ideas on yellow sticky notes. For each chosen need, participants decide which people within the organization should be responsible for fulfilling the need and write this on orange sticky notes. Participants summarize the insights of the previous steps in an action plan with SMART-formulated organization-specific goals to improve the support for family caregivers. The workshop is intended for a group of approximately 10 healthcare professionals of different professions within the team (e.g. nurses, nurse aides, physicians, activity coordinators, managers, volunteers) to grasp the entire care process across all layers of the organization. One of the participants leads the workshop. It is aimed for the workshop to last 1,5 to 2 hours. Four versions of the activity cards are developed to incorporate unique elements to each healthcare setting: hospital, nursing home, hospice and home care. Setting and participants In total, the workshop was conducted in 19 healthcare organizations (seven home care organizations, six hospices, three nursing homes, two hospitals and one transmural organization) between December 2021 and June 2022. The number of participants of the workshops ranged from 4 to 14 with a median of 6. Most participants were nursing staff of different levels. Other professions were volunteers (in hospices), spiritual counsellors, activity coordinators, nurse practitioners, quality coordinators, a social worker and a physician. In all workshops except for one, at least one member of the management team or a team leader participated. For the evaluation of the workshop, all workshop leaders were invited to participate in the focus group. It was aimed to include at least one participant from each healthcare setting. Procedure and data collection In each participating healthcare organization, a group of healthcare professionals was assembled to conduct the workshop. It was aimed to gather a diverse group of healthcare professionals to ensure that different perspectives were considered during the workshop. The workshop was led by one of the healthcare professionals who was instructed beforehand by a member of the research team. The workshop leader gave instructions to participants on the different steps, but also engaged in the discussions. During the workshop, a researcher was present to observe the process and to answer questions. Step six of the workshop, the development of an action plan with organization-specific goals to improve the support for family caregivers, was performed by a subgroup of participants after the workshop. A template for the action plan was provided by the research team (Additional file 1). A first draft of the action plan was shared with a member of the research team who provided feedback for goals to align with the SMART-criteria. Next, the action plan was finalized and shared with the research team for analysis. As part of the larger research project, the action plans were then implemented within the organizations over the following year. The impact of the implementation of the action plans on the support provided to family caregivers is described in a separate study (20). Once all healthcare organizations had conducted the workshop, researchers held a focus group to evaluate the workshop with a few workshop leaders of different healthcare organizations. The focus group was guided by a topic guide which addressed participants’ general experience with the workshop, more detailed accounts of participants’ experiences with the different steps of the workshop, and the content of the activity and needs cards. All participants provided written informed consent. Data analysis The action plans and a clean verbatim transcript of the focus group were analyzed by HH and EW with conventional content analysis (21). HH and EW inductively and independently coded the data and discussed discrepancies until agreement was reached. Next, through discussion with the research team, codes were grouped into categories which formed the basis for the structure of the results. Analyses were performed in ATLAS.ti (22). Results Outcomes of the workshop A total of 19 action plans were composed. The action plans described between three and six goals to overcome shortcomings in the current support for family caregivers and the actions needed to achieve those goals. Most action plans also included a timeline for when each goal was expected to be achieved and who was responsible for each action. There were substantial differences between the action plans from different organizations, with some being extensive and detailed and others being more concise. The goals and actions described in the action plans were grouped into two categories, each containing several subcategories. The first category related directly to the delivery of support for family caregivers by healthcare professionals. The second category consisted of actions on the team or organizational level that facilitate healthcare professionals in their task of supporting family caregivers. An overview of (sub)categories with quote illustrations is provided in Table 1 [at the end of the file] . The support for family caregivers provided by healthcare professionals Attention for family caregivers’ needs and wellbeing : Many of the goals that were described in the action plans related to paying more attention to family caregivers’ wellbeing and their unique needs and preferences. While efforts in this regard already existed within the organization prior to the workshop, many organizations were determined to do so in a more systematic manner. Actions of healthcare professionals included assessing family caregivers’ needs and wellbeing at fixed moments during the patient’s disease-trajectory, establishing greater clarity on the social network of each patient to ensure no important family caregivers were overlooked, and deploying methodologies to ensure that needs on all dimensions of palliative care were assessed. Information provision: Another commonly shared goal was to improve information provision, but the action plans differed in their specific focus. Some action plans focused on improving verbal and written information provision on a certain topic, such as the disease progression, additional support services, or practical information. Others focused on timing and how information was provided, for example by providing information in phases rather than in one go at the intake, or establishing a fixed contact person for family caregivers. Some also focused on making information provision more structured by establishing fixed moments within the disease-trajectory to provide information. Family caregivers’ involvement in the patient’s care: In some organizations, healthcare professionals committed themselves to improving collaboration with family caregivers in patient care. Most healthcare organizations wanted to more structurally assess family caregivers’ needs and wishes in this regard, while others intended to invite family caregivers to multidisciplinary team meetings or to regularly monitor family caregivers’ experienced caregiving burden. Family caregivers’ relationship to the patient: A few inpatient organizations wanted to facilitate opportunities to bring the family caregivers closer to the patient as a partner, child or friend. Some organizations wanted to provide practical information on possibilities within the organization to stay for dinner or to stay the night. Others focused on informing family caregivers and patients on possibilities to create meaningful memories together in the patient’s last phase of life, such as using a wish fulfillment service for terminally ill patients, or by giving family caregivers instructions on how to give the patient a hand massage to foster closeness and to be able to offer a gesture of care. Support after the patient’s death: Most of the action plans included a goal to improve the support for family caregivers after the patient’s death. Some organizations wanted to implement support for bereaved family caregivers as a new practice, and others focused on providing this support in a more systematic manner to all bereaved family caregivers. Types of support after the patient’s death included taking up contact with family caregivers some time after the patient’s death to inquire after their wellbeing, sending condolence cards, or organizing memorial services or informational meetings on grief for bereaved family caregivers. Actions at the team or organizational level to improve the support for family caregivers For healthcare professionals to provide high-quality support to family caregivers, healthcare organizations need to enable them to do so. Some action plans explicitly mentioned assessing healthcare professionals’ needs to improve their support for family caregivers. Below, more specific actions to facilitate healthcare professionals in their task of supporting family caregivers are described. Protocols, guidelines and working agreements: Many healthcare organizations aimed to make support for family caregivers a more structured part of daily routines by embedding this in existing protocols, guidelines and working agreements, or developing new ones. Some of these related to the support for family caregivers in general, others focused on specific elements of care (e.g., information provision or support after the patient’s death) or on the reporting on family caregivers’ needs and wellbeing. Some organizations wanted to develop a checklist on the support for family caregivers for to ensure that all family caregivers receive the appropriate support. Training and education: Most of the action plans described intentions to improve healthcare professionals’ knowledge and skills necessary to support family caregivers. To achieve this, healthcare organizations planned to organize training and educational sessions. Such trainings and educational sessions related to palliative care or the support for family caregivers in general, but also to specific skills and topics, such as conversational skills or grief. Some organizations also wanted to embed the support for family caregivers in the onboarding program for new employees. Tools: Healthcare organizations were also determined to develop or deploy tools for healthcare professionals to help them in their task of supporting family caregivers. These tools would help healthcare professionals in initiating conversations with family caregivers to elicit their wellbeing and needs, provide information and offer support, and to identify appropriate referral options if additional support was needed. Further, as reimbursement for support for (bereaved) family caregivers can be complex due to a lack of a formal care relationship, some organizations wanted to search for possibilities of such reimbursement and to establish a policy framework accordingly. Interprofessional collaboration: Many healthcare organizations also wanted to focus on improving collaboration between all colleagues working within the healthcare team in order to organize high-quality multidisciplinary support for family caregivers. Actions related to this included transfer of information on family caregivers’ needs and wellbeing among colleagues in team meetings, clinical handovers and written documentation. Further, intentions were described to establish clarity on who holds responsibility for the different tasks related to the support for family caregivers. Some organizations also wanted to strengthen collaboration with external disciplines, such as palliative care specialists, spiritual counsellors or general practitioners. Support for healthcare professionals: A few action plans also aimed to improve the support for healthcare professionals, acknowledging that the impact of caring for patients with life-threatening diseases and their family caregivers can be profound. Related actions included for an internal coach to provide aftercare to healthcare professionals after a patient’s death and creating a buddy system to facilitate mutual support among colleagues. Evaluation of the Family Caregiver Journey workshop Five workshop leaders of two home care organizations, one hospice, one nursing home and one hospital participated in the focus group to evaluate the workshop. Three participants had a nursing profession, one was a spiritual counsellor, and one was a hospice coordinator. All participants stated that they had enjoyed conducting the workshop and thought that it had brought about valuable discussions. They mentioned that the workshop and the discussions that emerged highlighted areas for improvement in the support for family caregivers within the organization, while also paying attention to what was already being done well, which was found encouraging. As such, all participants considered the workshop to be a valuable tool for developing goals to improve the support for family caregivers in their organization: “I have to admit, I was a bit skeptical at the start, because I thought we had things set up really well and that we were already very focused on family caregivers. But actually, we came up with some really valuable goals.” – Hospice coordinator Participants thought it very valuable to conduct the workshop with different professions, or with healthcare professionals from different teams, as the workshop offered opportunity to learn from each other and to better understand each other’s work processes: “We were a group of specialist nurses, district nurses and nursing assistants. And actually, we all complemented each other well. At first, I thought: how can we align our ways of working, since the specialist team operates differently from the district team. But it all blended together so well. I found that really remarkable.” - Nurse specialized in palliative care, home care Regarding the content of the activity- and needs cards, participants thought those generally captured the essence of supporting family caregivers. However, they did appreciate the possibility to use blank cards to add activities or needs specific to their organization. The only topic that they thought was currently lacking was the support provided by healthcare professionals to under-aged children. Although the instructions for the workshop leader seemed a bit daunting to some workshop leaders, when they were actually conducting the workshop, they found the process flowed naturally. However, instructions could be made clearer by adding indications on how much time each step should roughly take, and to add instructions in video format. Furthermore, almost all participants ran out of time, indicating that the workshop was too extensive for 1,5 to 2 hours. They thought step 5 (indicating who was responsible for meeting family caregivers’ needs), to be of least value. Two participants felt there were too many cards, especially as some addressed similar topics. However, another participant specifically appreciated this as it allowed for nuances to be made explicit which contributed to valuable discussion and insight. Adjusting the workshop based on the evaluation: Based on the focus group, some adjustments were made to the workshop. First, step 5 was dropped as this step was considered of least value by participants and the workshop took up too much time as it was. Second, an activity card was added to include the support provided to under-aged children. Last, the instructions for the workshop leader were made more extensive, including time indications for each step and a QR-code to instructions in video format. The final version of the workshop is depicted in figure 2. The workshop’s instructions and tools can be downloaded from this website (in Dutch: ‘Reis van de naasten workshop’): https://palliaweb.nl/oog-voor-naasten/materialen Discussion This study shows that the Family Caregiver Journey Workshop is a feasible and valuable tool to help healthcare teams across all healthcare settings (nursing home, hospital, home care, hospice) evaluate and improve their support for family caregivers. Across 19 different organizations, the workshops resulted in a broad range of improvement goals, targeting both direct support for family caregivers and team and organizational preconditions to sustain such support. Activities regarding the direct support for family caregivers included systemically addressing family caregivers’ needs and wellbeing, information provision, supporting involvement in patient care, supporting the relationship between patients and family caregivers, and support after the patient’s death. Activities on the team or organizational level included the development of protocols, guidelines and tools, training and education, interprofessional collaboration, and support for healthcare professionals. Participants valued the workshop for creating shared insights, fostering interprofessional dialogue, and identifying concrete areas for improvement. These findings highlight the potential of journey mapping as a structured quality improvement tool to improve the support for family caregivers. Reflection Many of the goals and activities mentioned in the action plans, such as systematically assessing caregiver needs, providing psychological support, improving information provision, supporting caregivers’ relationships with patients, and offering bereavement support echo well-established needs of family caregivers in the literature (23, 24). This shows that although these needs are acknowledged as important by healthcare teams, they are often not structurally addressed in daily practice. In addition to these interventions directly aimed at family caregivers, healthcare teams also intended to create organizational preconditions to ensure structural and systematic provision of support for family caregivers. The workshops led teams to formulate organizational and team-level actions, such as developing protocols, tools, and training, which are crucial preconditions for sustainable caregiver support. This aligns with prior studies emphasizing that caregiver support should not depend solely on individual professionals but must be embedded at the organizational level (25). It also demonstrates an important added value of journey mapping: it provides insight in areas for improvement on different levels and stresses the importance of support for family caregivers to be an integrated part of care on different levels. During the evaluation focus group, workshop leaders reported they had enjoyed conducting the workshop and thought that the workshop highlighted valuable areas for improvement in the support for family caregivers within their organization, while also paying attention to what was already being done well. Through this process, the healthcare teams developed a sense of ownership regarding their action plan. This sense of ownership likely contributed to participants’ sense of responsibility and motivation to actually get started on the goals and activities (26). Workshop leaders also particularly valued the involvement of different professions during the workshop as this improved mutual understanding of each other’s work. Such mutual understanding can facilitate multidisciplinary collaboration, which is of great importance as the support for family caregivers should not only be the sole responsibility of one discipline such as nursing staff, but an integrated responsibility of the whole team (25). By drawing up an action plan, healthcare teams also established a timeline and responsible parties for achieving the goals that were set. However, it is important to note that the goals and actions described in the action plans reflect the intentions of healthcare professionals. Certain preconditions are necessary for the actual implementation of the action plans, such as endorsement by the management of the organization so that healthcare professionals are provided with sufficient resources and tools to implement the action plan (26, 27). Further, it is important that one or more people within the organization are responsible for and oversee the implementation of the action plan (26). Journey mapping is increasingly being used to improve patient-centered care and identify gaps in care processes (14-16), but its application focused on the journey of family caregivers has mainly focused on family caregivers of patients with dementia (28-30). These studies describe the involvement of family caregivers in the mapping of their journey, to study their experiences via interviews, recording of logbooks or surveys (28-30). Our study demonstrates that mapping of the family caregiver’s journey by healthcare professionals in a structured workshop is also feasible and meaningful. It may complement existing interventions that directly target family caregivers as it identifies areas for improvement on the team and organizational level to improve structural support for family caregivers. Engaging family caregivers in the journey mapping workshops might enable an even more in-depth assessment of the unmet needs of family caregivers but could also lead to less attention for gaps in support for family caregivers on a team or organizational level. Future research could explore how the perspective of family caregivers can best be incorporated into the Family Caregiver Journey Workshop to ensure that important currently unmet needs of family caregivers are not overlooked. A suggestion is to present the results of the workshop to a panel or council of family caregivers within the organization and ask whether they recognize themselves in these results and if they have any further suggestions. Strengths and limitations A strength of this study is that, to our knowledge, it is the first time a structured workshop for healthcare professionals has been used to gain insight into the family caregivers’ journey within healthcare organizations. Furthermore, the workshop was conducted in 19 healthcare organizations across four settings providing care for different patient populations. The workshops involved healthcare disciplines from various backgrounds. This makes the results, including the Family Caregiver Journey Workshop itself, broadly applicable to many organizations and healthcare settings. By focusing on the current journey of family caregivers in different organizations, both existing activities and deficiencies are identified. This study also has several limitations. First, the evaluation was limited because only one focus group was held, in which not all participating organizations were represented. In addition, it was not verified whether all actions as described in the action plans were actually carried out as planned during the implementation phase of the broader ‘Support for Family Caregivers’ project. However, results of a pre- and post-survey study among bereaved family caregivers and healthcare professionals showed that, overall, the implementation of the action plans was effective in improving care for family caregivers (20). Conclusion The Family Caregiver Journey Workshop is a valuable implementation tool to help healthcare organizations systematically reflect on and improve support for family caregivers. By combining reflections on meeting family caregivers’ needs with organizational action planning, the workshop contributes to embedding family caregiver support as a structural component of palliative care in healthcare organizations. Declarations Ethics approval and consent to participate The Medical Research Ethics Committee of LUMC declared the study exempt from further ethical review as the Medical Research Involving Human Subjects Act did not apply (N21.072; 28 th May 2021). All focus group participants provided written informed consent. Consent for publication Not applicable. Availability of data and materials The data generated in this study are not publicly available due to ethical restrictions. The materials of the Family Caregiver Journey Workshop are available at https://palliaweb.nl/oog-voor-naasten/materialen (in Dutch: ‘Reis van de naasten workshop’). Competing interests The author(s) declared no potential competing interests with respect to the research, authorship, and/or publication of this article. Funding This work was funded by The Netherlands Organization for Health Research and Development [grant number 844001706]. Authors’ contributions A.S., H.H., W.B., M.S., J.S., I.H., L.B.V. and Y.L. contributed to the design of the study. H.H. and M.T. were involved in data collection. H.H. and E.W. analyzed the data. A.S. and H.H. drafted the manuscript. All coauthors were involved in the critical revision of the manuscript and approved its final version. Acknowledgments We thank all healthcare professionals and organizations who participated in the Family Caregiver Journey Workshops, the formulation of the action plans and the evaluation. References Kim Y, Carver CS, Spiegel D, Mitchell HR, Cannady RS. Role of family caregivers' self-perceived preparedness for the death of the cancer patient in long-term adjustment to bereavement. 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Support for family caregivers: A scoping review of family physician's perspectives on their role in supporting family caregivers. Health Soc Care Community. 2020;28(3):716-33. Cowie J, Nicoll A, Dimova ED, Campbell P, Duncan EA. The barriers and facilitators influencing the sustainability of hospital-based interventions: A systematic review. BMC Health Serv Res. 2020;20(1):588. Becqué YN, Rietjens JAC, van der Heide A, Witkamp E. How nurses support family caregivers in the complex context of end-of-life home care: A qualitative study. BMC Palliat Care. 2021;20(1):162. Daddato AE, Gleason KS, Dollar BA, McPhail TE, Kraus CR, Boxer RS. Understanding experiences of caregivers of spouses with dementia during caregiver health care emergencies. Gerontologist. 2024;64(7). Brookman R, Lipson-Smith R, Maurice O, McLlwain N, Hofstaetter L, DiGiacomo M, et al. Caring for people with dementia: Mapping the experience and journey from diagnosis. Gerontologist. 2025;65(5). Smith L, Phillipson L. Using Journey Mapping to support staff, family members and allies of people with dementia to think and act differently during a care transition: The benefits and limits of care imagination. Dementia (London). 2022;21(6):1873-89. Tables Table 1 . Actions to improve the support for family caregivers as described in the action plans including quote illustrations. Category Quote illustrations Healthcare setting The support for family caregivers as provided by healthcare professional Attention for family caregivers’ needs and wellbeing “The volunteer, nurse or coordinator pays attention to the wellbeing of family caregivers both upon arrival and after their visit to the patient.” “During the intake, the coordinator explores the needs of family caregivers across the four dimensions and documents them in the electronic medical record. These needs are revisited in follow-up conversations.” “With each close family caregiver of a patient, a conversation is held to identify and clarify their needs.” “Inquire about needs that arise from the family caregiver’s cultural background.” “Gain insight into the patient’s support system of the most involved family caregivers.” Hospice Hospice Home care Hospital Transmural Information provision “Family caregivers are informed about what to expect when their loved one stays in our hospice, both in terms of the support available to them and the medical information regarding the last phase of life.” “The family caregivers is informed by the nurse about the characteristics of the dying phase and is notified when this phase has begun.” “Family caregivers receive practical information as nurses hand out brochures and/or show videos at designated times throughout the care process.” “Offer information in a more paced manner, both in written and verbal form. Using information materials suited to the target population. Applying the teach-back method.” “[Workshop] participants (district nurses) noticed that they are frequently asked questions that nurse assistants seem less able to answer. Action points: more active involvement of district nurses in the care for patients in the palliative phase.” Hospice Hospice Hospital Home care Home care Family caregivers’ involvement in the patient’s care “At the time of admission, family caregivers are asked whether they wish to be involved in providing care to the patient and agreements are made accordingly. We facilitate opportunities for family caregivers to contribute to the patient’s care.” “The family caregiver (and the patient) is invited to be present during the multidisciplinary meeting in which the patient will be discussed.” “Assessing the need whether or not family caregivers want to participate in patient care.” “Family caregivers’ resilience: signaling overburdening and repeated use of EDIZ questionnaire [validated Dutch questionnaire to assess caregiver burden].” Hospice Hospice Hospital Home care Family caregivers’ relationship to the patient “Structured attention for fulfilling the final wishes of patients and their family caregivers (…). Wishes from children: what would you still like to do with your parent? Wishes from partners/other family caregivers: what would you still like to do together?” “Inform family caregivers about the possibility to create a meaningful memory (creative therapist, Ambulance Wish Foundation).” “A sheet will be made available where volunteers can describe meaningful moments they had with a patient. These meaningful moments will be compiled and given as a keepsake to family caregivers.” “The team will make agreements about rooming-in. (…) Family caregivers will have an introductory and evaluation conversation with the nurse about rooming-in.” “Staff members know how to give a hand massage and how to use essential oils. They are also able to instruct family caregivers on, for example, how to give their loved one a hand massage.” Hospice Hospice Hospice Hospital Nursing home Support after the patient’s death “The primary contact person of each patient who died will be contacted within one month by phone for a follow-up conversation, conducted by the nurse who was most involved in the days before the death.” “During the follow-up conversation, we use our clinical lens to evaluate the potential risk of complicated grief. If this risk is present, the questionnaire ‘Grief’ [validated Dutch questionnaire to assess complicated grief] will be completed together with the family caregiver. If the results indicate complicated grief, a care plan can be developed and, if necessary, the case will be referred to a specialist.” “Once a year, a gathering for bereaved family caregivers will be organized at the office, where they can come together with a palliative care nurse and a grief coach.” “To support family caregivers in their grieving process after the loss of a loved one, a follow-up conversation will take place immediately after the death (within 6 hours at the latest) and again three months later. During this conversation, the upcoming memorial service is also discussed.” Hospital Home care Home care Nursing home Actions on the organizational or team level to improve support for family caregivers Protocols, guidelines and working agreements “The coordinator will develop a guideline on how medical interventions should be communicated to the family caregivers, ensuring that all nurses do this in a consistent manner.” “The coordinator will develop a step-by-step protocol with regard to patients who are transferred to another facility or return home, including specified contact moments with the patient and their family caregivers.” “The coordinator will develop a step-by-step protocol outlining the specific moments at which contact is established with bereaved family caregivers for the follow-up conversation.” “A checklist will be implemented to document support needs of family caregivers along with a specification of which healthcare professionals will be responsible for addressing these needs.” “The care plan will include the role of family caregivers and the needs they have.” “An overview will be created listing the actions carried out during the terminal and palliative phase. This includes actions related to the patient, but also to the family caregivers. This overview will clearly indicate when each action is initiated and who is responsible for it.” Hospice Hospice Hospice Home care Home care Nursing home Training and education “Support for family caregivers will be incorporated in the basic training for volunteers. The onboarding program for nurses will be adjusted.” “[Organizing a] theme month: practical information for family caregivers. July > clinical lesson on which brochures can be handed out / which videos and how to register this.” “Organizing a training session on professional communication skills for nurses.” “Inviting an ‘expert by experience’.” “Training session focused on raising awareness and on having attention for the needs of family caregivers during the palliative phase.” Hospice Hospital Home care Home care Nursing home Tools “An information sheet will be created with a checklist outlining key points to consider when conducting a follow-up conversation.” “An inventory will be made of the support available for family caregivers within the social care sector. A ‘care map’ will be developed, including relevant disciplines, institutions and contact information from both internal and external sources of support for family caregivers.” “The project team will collect brochures that can be handed out during the dying phase.” “A family room will be set up in the geriatrics department.” “‘Conversation cards’ will be developed that align with the traditions, culture and language of (bereaved) family caregivers. These cards will be used in a training for healthcare professionals.” Hospice Home care Home care Hospital Nursing home Interprofessional collaboration “During clinical handovers, the support for family caregivers will be discussed daily, including a clear indication of who is responsible for each aspect.” “Nurses will document in the patient’s file which brochures have been handed out or which videos have been viewed.” “An overview will be created specifying who is responsible for each action and at which stage of the disease/dying process the action is to be carried out.” “Consultation/feedback to the GP/practice nurse.” Hospice Hospital Nursing home Transmural Support for healthcare professionals “Within the teams, a team member is appointed, or a buddy system is used, so that staff members always have someone to talk to or share concerns with.” “Team members can call each other when needed.” “Aftercare conversations will take place [with healthcare professionals following the death of a patient] either individually or in a group setting. A team coach is present during these sessions.” Home care Home care Nursing home Additional Declarations The authors declare no competing interests. Supplementary Files Aditionalfile1.TemplateofactionplanStoppelenburgetal.docx Additional file 1. Action plan template: Support for Family Caregivers intervention Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. 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2","display":"","copyAsset":false,"role":"figure","size":288182,"visible":true,"origin":"","legend":"\u003cp\u003eVisualization of the steps of the final version of the Family Caregiver Journey Workshop\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-8219975/v1/7502ebdc6723e7a517a5dfd1.png"},{"id":97373123,"identity":"5f96edb9-598e-432b-b57f-8356cbf7ba41","added_by":"auto","created_at":"2025-12-03 16:34:17","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1457463,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8219975/v1/cb3f697e-6e96-422c-b8ae-8f14f26fdd4a.pdf"},{"id":97342749,"identity":"7abbb175-c185-4b66-aae8-d0354cb932f1","added_by":"auto","created_at":"2025-12-03 11:32:30","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":24414,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eAdditional file 1. Action plan template: Support for Family Caregivers intervention\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"Aditionalfile1.TemplateofactionplanStoppelenburgetal.docx","url":"https://assets-eu.researchsquare.com/files/rs-8219975/v1/929e4f2b02b53c1af644c0e5.docx"}],"financialInterests":"The authors declare no competing interests.","formattedTitle":"\u003cp\u003e\u003cstrong\u003eImproving support for family caregivers in palliative care through journey mapping: a qualitative study across 19 healthcare organizations\u003c/strong\u003e\u003c/p\u003e","fulltext":[{"header":"Contribution to the literature","content":"\u003cul type=\"disc\"\u003e\n \u003cli\u003eThis study describes the use of a new implementation tool, the Family Caregiver Journey Workshop, aimed at helping healthcare organizations to provide structural support for family caregivers of patients with life-threatening diseases.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eThe workshop is effective at identifying areas for improvement in support for family caregivers at the individual, team and organizational level.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eIt helps healthcare teams to discuss, understand, acknowledge family caregivers\u0026rsquo; needs and experiences, reflect on their current practice of supporting them, and to set targeted improvement goals.\u0026nbsp;\u003c/li\u003e\n\u003c/ul\u003e"},{"header":"Introduction","content":"\u003cp\u003eFamily caregivers play an important role in supporting and providing care for patients with life-threatening diseases. Providing this care can be rewarding, but it can also pose a great burden on family caregivers, who can suffer from physical symptoms such as sleep problems, exhaustion, illness, and psychological symptoms such as anxiety and depression (\u003cspan additionalcitationids=\"CR2 CR3\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). With an aging population, increasing shortages in formal caregivers, and people staying at home longer, the burden on family caregivers is expected to rise in the near future (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). The impact of the patient\u0026rsquo;s disease on family caregivers can partly be explained by the different roles that family caregivers adopt when caring for their loved one. Family caregivers adopt a role as caregiver, providing practical, physical and emotional care for the patient, and as their partner, child or friend (\u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Simultaneously, they are care recipients who must deal with their own feelings of grief and loss. Family caregivers should be empowered to cope and continue caring for the patient during the disease trajectory until the end of life, while also paying attention to their own wellbeing and needs.\u003c/p\u003e\u003cp\u003eThe definition of palliative care clearly states that palliative care should also aim to improve the quality of life of family caregivers (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). However, family caregivers often have unmet support needs (\u003cspan additionalcitationids=\"CR11\" citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). This can partially be attributed to support for family caregivers not being systematically embedded within healthcare organizations (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). Consequently, support for family caregivers depends mostly on the initiative of individual healthcare professionals. However, the focus of healthcare professionals is typically on the patient\u0026rsquo;s needs and problems. Therefore, for support to be consistently provided to family caregivers, it needs to be ingrained at the organizational level.\u003c/p\u003e\u003cp\u003eAn effective method for quality improvement of healthcare practice is \u0026lsquo;patient journey mapping\u0026rsquo;, which is a relatively innovative approach that provides detailed insights into the patient\u0026rsquo;s journey from initial entry to progression through the healthcare system. Patient journey mapping involves creating a visual timeline that depicts the multidimensional relation between a patient and the healthcare system. Such a visual narrative timeline can help healthcare organizations to evaluate their current practices and to decide on how they can improve their work processes so that those are as fitting to patients\u0026rsquo; support needs as possible (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). Journey mapping has several benefits: it illustrates a patient\u0026rsquo;s pathway or process from a patient\u0026rsquo;s perspective, it can be a starting point for quality improvement, and it is an interactive event that enforces staff engagement. Such staff engagement creates a culture of ownership and a sense of responsibility within a healthcare team with regard to the areas for improvements that are brought to light during the process (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). Although the journey of a patient and the journey of his or her family caregiver(s) may overlap to a certain extent, the journey of the family caregiver has unique components following the different roles they fulfill, and the specific needs they may have during the disease trajectory (e.g. regarding information provision or involvement in the patient\u0026rsquo;s care). In addition, the journey of the family caregivers continues after the death of the patient.\u003c/p\u003e\u003cp\u003eIn this study, the patient journey mapping method was used to develop the Family Caregiver Journey Workshop as an implementation tool for healthcare professionals to 1) reflect on their current practice of supporting family caregivers and to 2) identify areas for improvement in their support for family caregivers during the patient\u0026rsquo;s disease trajectory and after their death. To our knowledge, journey mapping has not been used before as a structured method in the form of a workshop to improve the support for family caregivers. The aim of this study was twofold: 1) to investigate the output of the workshop and 1) to evaluate the process of the workshop.\u003c/p\u003e"},{"header":"Materials and methods","content":"\u003cp\u003e\u003cstrong\u003eStudy design and context\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis qualitative study was part of a larger Dutch research project called \u0026lsquo;Support for family caregivers\u0026rsquo; (2017-2024) consisting of three substudies funded by the Netherlands Organisation for Health Research and Development (ZonMw: 844001312; 844001804; 844001706). The latest substudy of this project, conducted between 2021 and 2024, aimed to systematically improve support for family caregivers in different healthcare settings by implementing an organizational intervention comprising a structured practice improvement trajectory (17). The Family Caregiver Journey Workshop was developed as an implementation tool to tailor the intervention to the current practices of each participating healthcare organization. The output of the workshop consisted of action plans with organization-specific goals to improve the support for family caregivers.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eThe Family Caregiver Journey Workshop\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDuring the Family Caregiver Journey Workshop, healthcare teams map the journey of family caregivers within their organization. This structured exercise provides insight into their current practice of supporting family caregivers during the patient\u0026rsquo;s disease trajectory and after the death, and enables them to reflect on how their practice could be improved. The workshop was developed using a design research approach (18) involving literature review, interviews with family caregivers and healthcare professionals, and co-creation sessions with healthcare professionals and the research team to ensure its relevance and usability in practice. A detailed description of the development process is described elsewhere (19). The workshop comprises of six steps which are described below. A visual overview of these steps is presented in Figure 1.\u003c/p\u003e\n\u003col start=\"1\" type=\"1\"\u003e\n \u003cli\u003e\u0026nbsp;Participants map the family caregiver\u0026rsquo;s journey within their organization, throughout the patient\u0026rsquo;s disease-trajectory and after their death. They use so-called \u0026lsquo;activity cards\u0026rsquo; on which various activities are described that healthcare professionals can undertake to support family caregivers (e.g. \u0026lsquo;providing practical support\u0026rsquo; or \u0026lsquo;conducting a follow-up conversation after the patient\u0026rsquo;s death\u0026rsquo;). Healthcare professionals identify which actions they currently perform and which they do not, and list the actions they usually perform in chronological order. Blank activity cards are available to add activities not covered by the set of cards.\u003c/li\u003e\n \u003cli\u003eParticipants establish which of family caregivers\u0026rsquo; needs they currently sufficiently and insufficiently accommodate. They use so-called \u0026lsquo;needs cards\u0026rsquo; that describe various needs of family caregivers (e.g. \u0026lsquo;being involved in medical decision making\u0026rsquo; or \u0026lsquo;having a primary contact person\u0026rsquo;). Participants then choose 3 to 5 of family caregivers\u0026rsquo; needs for which they feel there is room for improvement within their organization. Blank needs cards are available to add needs not covered by the set of cards.\u003c/li\u003e\n \u003cli\u003eFor each chosen need, participants decide where in the family caregivers\u0026rsquo; journey (step 1) this need is currently sufficiently or insufficiently met. They do this by sticking green and pink sticky notes across the journey for each chosen need.\u003c/li\u003e\n \u003cli\u003eFor each pink sticky note, participants brainstorm on how this specific need could be better accommodated and write their ideas on yellow sticky notes.\u003c/li\u003e\n \u003cli\u003eFor each chosen need, participants decide which people within the organization should be responsible for fulfilling the need and write this on orange sticky notes.\u003c/li\u003e\n \u003cli\u003eParticipants summarize the insights of the previous steps in an action plan with SMART-formulated organization-specific goals to improve the support for family caregivers.\u0026nbsp;\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eThe workshop is intended for a group of approximately 10 healthcare professionals of different professions within the team (e.g. nurses, nurse aides, physicians, activity coordinators, managers, volunteers) to grasp the entire care process across all layers of the organization. One of the participants leads the workshop. It is aimed for the workshop to last 1,5 to 2 hours. Four versions of the activity cards are developed to incorporate unique elements to each healthcare setting: hospital, nursing home, hospice and home care. \u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSetting and participants\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn total, the workshop was conducted in 19 healthcare organizations (seven home care organizations, six hospices, three nursing homes, two hospitals and one transmural organization) between December 2021 and June 2022. The number of participants of the workshops ranged from 4 to 14 with a median of 6. Most participants were nursing staff of different levels. Other professions were volunteers (in hospices), spiritual counsellors, activity coordinators, nurse practitioners, quality coordinators, a social worker and a physician. In all workshops except for one, at least one member of the management team or a team leader participated. For the evaluation of the workshop, all workshop leaders were invited to participate in the focus group. It was aimed to include at least one participant from each healthcare setting. \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eProcedure and data collection\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn each participating healthcare organization, a group of healthcare professionals was assembled to conduct the workshop. It was aimed to gather a diverse group of healthcare professionals to ensure that different perspectives were considered during the workshop. The workshop was led by one of the healthcare professionals who was instructed beforehand by a member of the research team. The workshop leader gave instructions to participants on the different steps, but also engaged in the discussions. During the workshop, a researcher was present to observe the process and to answer questions. Step six of the workshop, the development of an action plan with organization-specific goals to improve the support for family caregivers, was performed by a subgroup of participants after the workshop. A template for the action plan was provided by the research team (Additional file 1). A first draft of the action plan was shared with a member of the research team who provided feedback for goals to align with the SMART-criteria. Next, the action plan was finalized and shared with the research team for analysis. As part of the larger research project, the action plans were then implemented within the organizations over the following year. The impact of the implementation of the action plans on the support provided to family caregivers is described in a separate study (20).\u003c/p\u003e\n\u003cp\u003eOnce all healthcare organizations had conducted the workshop, researchers held a focus group to evaluate the workshop with a few workshop leaders of different healthcare organizations. The focus group was guided by a topic guide which addressed participants\u0026rsquo; general experience with the workshop, more detailed accounts of participants\u0026rsquo; experiences with the different steps of the workshop, and the content of the activity and needs cards. All participants provided written informed consent.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData analysis\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe action plans and a clean verbatim transcript of the focus group were analyzed by HH and EW with conventional content analysis (21). HH and EW inductively and independently coded the data and discussed discrepancies until agreement was reached. Next, through discussion with the research team, codes were grouped into categories which formed the basis for the structure of the results. Analyses were performed in ATLAS.ti (22).\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cstrong\u003eOutcomes of the workshop\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA total of 19 action plans were composed. The action plans described between three and six goals to overcome shortcomings in the current support for family caregivers and the actions needed to achieve those goals. Most action plans also included a timeline for when each goal was expected to be achieved and who was responsible for each action. There were substantial differences between the action plans from different organizations, with some being extensive and detailed and others being more concise. The goals and actions described in the action plans were grouped into two categories, each containing several subcategories. The first category related directly to the delivery of support for family caregivers by healthcare professionals. The second category consisted of actions on the team or organizational level that facilitate healthcare professionals in their task of supporting family caregivers. An overview of (sub)categories with quote illustrations is provided in Table 1 \u003cem\u003e[at the end of the file]\u003c/em\u003e.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eThe support for family caregivers provided by healthcare professionals\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAttention for family caregivers\u0026rsquo; needs and wellbeing\u003c/em\u003e\u003cem\u003e:\u0026nbsp;\u003c/em\u003eMany of the goals that were described in the action plans related to paying more attention to family caregivers\u0026rsquo; wellbeing and their unique needs and preferences. While efforts in this regard already existed within the organization prior to the workshop, many organizations were determined to do so in a more systematic manner. Actions of healthcare professionals included assessing family caregivers\u0026rsquo; needs and wellbeing at fixed moments during the patient\u0026rsquo;s disease-trajectory, establishing greater clarity on the social network of each patient to ensure no important family caregivers were overlooked, and deploying methodologies to ensure that needs on all dimensions of palliative care were assessed.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eInformation provision:\u003c/em\u003e Another commonly shared goal was to improve information provision, but the action plans differed in their specific focus. Some action plans focused on improving verbal and written information provision on a certain topic, such as the disease progression, additional support services, or practical information. Others focused on timing and how information was provided, for example by providing information in phases rather than in one go at the intake, or establishing a fixed contact person for family caregivers. Some also focused on making information provision more structured by establishing fixed moments within the disease-trajectory to provide information.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFamily caregivers\u0026rsquo; involvement in the patient\u0026rsquo;s care:\u003c/em\u003e In some organizations, healthcare professionals committed themselves to improving collaboration with family caregivers in patient care. Most healthcare organizations wanted to more structurally assess family caregivers\u0026rsquo; needs and wishes in this regard, while others intended to invite family caregivers to multidisciplinary team meetings or to regularly monitor family caregivers\u0026rsquo; experienced caregiving burden.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFamily caregivers\u0026rsquo; relationship to the patient:\u003c/em\u003e A few inpatient organizations wanted to facilitate opportunities to bring the family caregivers closer to the patient as a partner, child or friend. Some organizations wanted to provide practical information on possibilities within the organization to stay for dinner or to stay the night. Others focused on informing family caregivers and patients on possibilities to create meaningful memories together in the patient\u0026rsquo;s last phase of life, such as using a wish fulfillment service for terminally ill patients, or by giving family caregivers instructions on how to give the patient a hand massage to foster closeness and to be able to offer a gesture of care.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eSupport after the patient\u0026rsquo;s death:\u003c/em\u003e Most of the action plans included a goal to improve the support for family caregivers after the patient\u0026rsquo;s death. Some organizations wanted to implement support for bereaved family caregivers as a new practice, and others focused on providing this support in a more systematic manner to all bereaved family caregivers. Types of support after the patient\u0026rsquo;s death included taking up contact with family caregivers some time after the patient\u0026rsquo;s death to inquire after their wellbeing, sending condolence cards, or organizing memorial services or informational meetings on grief for bereaved family caregivers.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eActions at the team or organizational level to improve the support for family caregivers\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFor healthcare professionals to provide high-quality support to family caregivers, healthcare organizations need to enable them to do so. Some action plans explicitly mentioned assessing healthcare professionals\u0026rsquo; needs to improve their support for family caregivers. Below, more specific actions to facilitate healthcare professionals in their task of supporting family caregivers are described.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eProtocols, guidelines and working agreements:\u003c/em\u003e Many healthcare organizations aimed to make support for family caregivers a more structured part of daily routines by embedding this in existing protocols, guidelines and working agreements, or developing new ones. Some of these related to the support for family caregivers in general, others focused on specific elements of care (e.g., information provision or support after the patient\u0026rsquo;s death) or on the reporting on family caregivers\u0026rsquo; needs and wellbeing. Some organizations wanted to develop a checklist on the support for family caregivers for to ensure that all family caregivers receive the appropriate support.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eTraining and education:\u003c/em\u003e Most of the action plans described intentions to improve healthcare professionals\u0026rsquo; knowledge and skills necessary to support family caregivers. To achieve this, healthcare organizations planned to organize training and educational sessions. Such trainings and educational sessions related to palliative care or the support for family caregivers in general, but also to specific skills and topics, such as conversational skills or grief. Some organizations also wanted to embed the support for family caregivers in the onboarding program for new employees.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eTools:\u003c/em\u003e Healthcare organizations were also determined to develop or deploy tools for healthcare professionals to help them in their task of supporting family caregivers. These tools would help healthcare professionals in initiating conversations with family caregivers to elicit their wellbeing and needs, provide information and offer support, and to identify appropriate referral options if additional support was needed. Further, as reimbursement for support for (bereaved) family caregivers can be complex due to a lack of a formal care relationship, some organizations wanted to search for possibilities of such reimbursement and to establish a policy framework accordingly. \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eInterprofessional collaboration:\u003c/em\u003e Many healthcare organizations also wanted to focus on improving collaboration between all colleagues working within the healthcare team in order to organize high-quality multidisciplinary support for family caregivers. Actions related to this included transfer of information on family caregivers\u0026rsquo; needs and wellbeing among colleagues in team meetings, clinical handovers and written documentation. Further, intentions were described to establish clarity on who holds responsibility for the different tasks related to the support for family caregivers. Some organizations also wanted to strengthen collaboration with external disciplines, such as palliative care specialists, spiritual counsellors or general practitioners.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eSupport for healthcare professionals:\u003c/em\u003e A few action plans also aimed to improve the support for healthcare professionals, acknowledging that the impact of caring for patients with life-threatening diseases and their family caregivers can be profound. Related actions included for an internal coach to provide aftercare to healthcare professionals after a patient\u0026rsquo;s death and creating a buddy system to facilitate mutual support among colleagues.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEvaluation of the Family Caregiver Journey workshop\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFive workshop leaders of two home care organizations, one hospice, one nursing home and one hospital participated in the focus group to evaluate the workshop. Three participants had a nursing profession, one was a spiritual counsellor, and one was a hospice coordinator. All participants stated that they had enjoyed conducting the workshop and thought that it had brought about valuable discussions. They mentioned that the workshop and the discussions that emerged highlighted areas for improvement in the support for family caregivers within the organization, while also paying attention to what was already being done well, which was found encouraging. As such, all participants considered the workshop to be a valuable tool for developing goals to improve the support for family caregivers in their organization:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I have to admit, I was a bit skeptical at the start, because I thought we had things set up really well and that we were already very focused on family caregivers. But actually, we came up with some really valuable goals.\u0026rdquo;\u003c/em\u003e \u0026ndash; Hospice coordinator\u003c/p\u003e\n\u003cp\u003eParticipants thought it very valuable to conduct the workshop with different professions, or with healthcare professionals from different teams, as the workshop offered opportunity to learn from each other and to better understand each other\u0026rsquo;s work processes:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;We were a group of specialist nurses, district nurses and nursing assistants. And actually, we all complemented each other well. At first, I thought: how can we align our ways of working, since the specialist team operates differently from the district team. But it all blended together so well. I found that really remarkable.\u0026rdquo;\u003c/em\u003e - Nurse specialized in palliative care, home care\u003c/p\u003e\n\u003cp\u003eRegarding the content of the activity- and needs cards, participants thought those generally captured the essence of supporting family caregivers. However, they did appreciate the possibility to use blank cards to add activities or needs specific to their organization. The only topic that they thought was currently lacking was the support provided by healthcare professionals to under-aged children.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAlthough the instructions for the workshop leader seemed a bit daunting to some workshop leaders, when they were actually conducting the workshop, they found the process flowed naturally. However, instructions could be made clearer by adding indications on how much time each step should roughly take, and to add instructions in video format. Furthermore, almost all participants ran out of time, indicating that the workshop was too extensive for 1,5 to 2 hours. They thought step 5 (indicating who was responsible for meeting family caregivers\u0026rsquo; needs), to be of least value. Two participants felt there were too many cards, especially as some addressed similar topics. However, another participant specifically appreciated this as it allowed for nuances to be made explicit which contributed to valuable discussion and insight.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAdjusting the workshop based on the evaluation:\u003c/em\u003e\u003cstrong\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/strong\u003eBased on the focus group, some adjustments were made to the workshop. First, step 5 was dropped as this step was considered of least value by participants and the workshop took up too much time as it was. Second, an activity card was added to include the support provided to under-aged children. Last, the instructions for the workshop leader were made more extensive, including time indications for each step and a QR-code to instructions in video format. The final version of the workshop is depicted in figure 2. The workshop\u0026rsquo;s instructions and tools can be downloaded from this website (in Dutch: \u0026lsquo;Reis van de naasten workshop\u0026rsquo;): https://palliaweb.nl/oog-voor-naasten/materialen\u0026nbsp;\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study shows that the Family Caregiver Journey Workshop is a feasible and valuable tool to help healthcare teams across all healthcare settings (nursing home, hospital, home care, hospice) evaluate and improve their support for family caregivers. Across 19 different organizations, the workshops resulted in a broad range of improvement goals, targeting both direct support for family caregivers and team and organizational preconditions to sustain such support. Activities regarding the direct support for family caregivers included systemically addressing family caregivers\u0026rsquo; needs and wellbeing, information provision, supporting involvement in patient care, supporting the relationship between patients and family caregivers, and support after the patient\u0026rsquo;s death. Activities on the team or organizational level included the development of protocols, guidelines and tools, training and education, interprofessional collaboration, and support for healthcare professionals. Participants valued the workshop for creating shared insights, fostering interprofessional dialogue, and identifying concrete areas for improvement. These findings highlight the potential of journey mapping as a structured quality improvement tool to improve the support for family caregivers.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eReflection\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMany of the goals and activities mentioned in the action plans, such as systematically assessing caregiver needs, providing psychological support, improving information provision, supporting caregivers\u0026rsquo; relationships with patients, and offering bereavement support echo well-established needs of family caregivers in the literature (23, 24). This shows that although these needs are acknowledged as important by healthcare teams, they are often not structurally addressed in daily practice. In addition to these interventions directly aimed at family caregivers, healthcare teams also intended to create organizational preconditions to ensure structural and systematic provision of support for family caregivers. The workshops led teams to formulate organizational and team-level actions, such as developing protocols, tools, and training, which are crucial preconditions for sustainable caregiver support. This aligns with prior studies emphasizing that caregiver support should not depend solely on individual professionals but must be embedded at the organizational level (25). It also demonstrates an important added value of journey mapping: it provides insight in areas for improvement on different levels and stresses the importance of support for family caregivers to be an integrated part of care on different levels.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eDuring the evaluation focus group, workshop leaders reported they had enjoyed conducting the workshop and thought that the workshop highlighted valuable areas for improvement in the support for family caregivers within their organization, while also paying attention to what was already being done well. Through this process, the healthcare teams developed a sense of ownership regarding their action plan. This sense of ownership likely contributed to participants\u0026rsquo; sense of responsibility and motivation to actually get started on the goals and activities (26).\u0026nbsp;Workshop leaders also particularly valued the involvement of different professions during the workshop as this improved mutual understanding of each other\u0026rsquo;s work. Such mutual understanding can facilitate multidisciplinary collaboration, which is of great importance as the support for family caregivers should not only be the sole responsibility of one discipline such as nursing staff, but an integrated responsibility of the whole team (25).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eBy drawing up an action plan, healthcare teams also established a timeline and responsible parties for achieving the goals that were set. However, it is important to note that the goals and actions described in the action plans reflect the intentions of healthcare professionals. Certain preconditions are necessary for the actual implementation of the action plans, such as endorsement by the management of the organization so that healthcare professionals are provided with sufficient resources and tools to implement the action plan (26, 27). Further, it is important that one or more people within the organization are responsible for and oversee the implementation of the action plan\u0026nbsp;(26).\u003c/p\u003e\n\u003cp\u003eJourney mapping is increasingly being used to improve patient-centered care and identify gaps in care processes (14-16), but its application focused on the journey of family caregivers has mainly focused on family caregivers of patients with dementia\u0026nbsp;(28-30). These studies describe the involvement of family caregivers in the mapping of their journey, to study their experiences via interviews, recording of logbooks or surveys\u0026nbsp;(28-30). Our study demonstrates that mapping of the family caregiver\u0026rsquo;s journey by healthcare professionals in a structured workshop is also feasible and meaningful. It may complement existing interventions that directly target family caregivers as it identifies areas for improvement on the team and organizational level to improve structural support for family caregivers. Engaging family caregivers in the journey mapping workshops might enable an even more in-depth assessment of the unmet needs of family caregivers but could also lead to less attention for gaps in support for family caregivers on a team or organizational level. Future research could explore how the perspective of family caregivers can best be incorporated into the Family Caregiver Journey Workshop to ensure that important currently unmet needs of family caregivers are not overlooked. A suggestion is to present the results of the workshop to a panel or council of family caregivers within the organization and ask whether they recognize themselves in these results and if they have any further suggestions.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStrengths and limitations\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA strength of this study is that, to our knowledge, it is the first time a structured workshop for healthcare professionals has been used to gain insight into the family caregivers\u0026rsquo; journey within healthcare organizations. Furthermore, the workshop was conducted in 19 healthcare organizations across four settings providing care for different patient populations. The workshops involved healthcare disciplines from various backgrounds. This makes the results, including the Family Caregiver Journey Workshop itself, broadly applicable to many organizations and healthcare settings. By focusing on the current journey of family caregivers in different organizations, both existing activities and deficiencies are identified.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis study also has several limitations. First, the evaluation was limited\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003ebecause\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003eonly one focus group was held, in which not all participating organizations were represented. In addition, it was not verified whether all actions as described in the action plans were actually carried out as planned during the implementation phase of the broader \u0026lsquo;Support for Family Caregivers\u0026rsquo; project. However, results of a pre- and post-survey study among bereaved family caregivers and healthcare professionals showed that, overall, the implementation of the action plans was effective in improving care for family caregivers (20).\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThe Family Caregiver Journey Workshop is a valuable implementation tool to help healthcare organizations systematically reflect on and improve support for family caregivers. By combining reflections on meeting family caregivers\u0026rsquo; needs with organizational action planning, the workshop contributes to embedding family caregiver support as a structural component of palliative care in healthcare organizations.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe Medical Research Ethics Committee of LUMC declared the study exempt from further ethical review as the Medical Research Involving Human Subjects Act did not apply (N21.072; 28\u003csup\u003eth\u003c/sup\u003e May 2021). All focus group participants provided written informed consent.\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\u003eThe data generated in this study are not publicly available due to ethical restrictions. The materials of the Family Caregiver Journey Workshop are available at https://palliaweb.nl/oog-voor-naasten/materialen (in Dutch: \u0026lsquo;Reis van de naasten workshop\u0026rsquo;).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe author(s) declared no potential competing interests with respect to the research, authorship, and/or publication of this article.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis work was funded by The Netherlands Organization for Health Research and Development [grant number 844001706].\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA.S., H.H., W.B., M.S., J.S., I.H., L.B.V. and Y.L. contributed to the design of the study. H.H. and M.T. were involved in data collection. H.H. and E.W. analyzed the data. A.S. and H.H. drafted the manuscript. All coauthors were involved in the critical revision of the manuscript and approved its final version.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgments\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe thank all healthcare professionals and organizations who participated in the Family Caregiver Journey Workshops, the formulation of the action plans and the evaluation.\u003cstrong\u003e\u003cbr\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eKim Y, Carver CS, Spiegel D, Mitchell HR, Cannady RS. Role of family caregivers\u0026apos; self-perceived preparedness for the death of the cancer patient in long-term adjustment to bereavement. Psychooncology. 2017;26(4):484-92.\u003c/li\u003e\n\u003cli\u003eFridriksd\u0026oacute;ttir N, Saevarsd\u0026oacute;ttir T, Halfd\u0026aacute;nard\u0026oacute;ttir SI, J\u0026oacute;nsd\u0026oacute;ttir A, Magn\u0026uacute;sd\u0026oacute;ttir H, Olafsd\u0026oacute;ttir KL, et al. Family members of cancer patients: Needs, quality of life and symptoms of anxiety and depression. Acta Oncol. 2011;50(2):252-8.\u003c/li\u003e\n\u003cli\u003evan Roij J, Raijmakers N, Ham L, van den Beuken-van Everdingen M, van den Borne B, Creemers GJ, et al. Quality of life and quality of care as experienced by patients with advanced cancer and their relatives: A multicentre observational cohort study (eQuiPe). Eur J Cancer. 2022;165:125-35.\u003c/li\u003e\n\u003cli\u003eHam L, Fransen HP, Raijmakers NJH, van den Beuken-van Everdingen MHJ, van den Borne B, Creemers GJ, et al. Trajectories of emotional functioning and experienced care of relatives in the last year of life of patients with advanced cancer: A longitudinal analysis of the eQuiPe study. Psychooncology. 2023;32(12):1858-66.\u003c/li\u003e\n\u003cli\u003eWorld Health Organization. State of the World\u0026apos;s Nursing. 2020: investing in education, jobs and leadership 2020 [Available from: https://www.who.int/publications/i/item/9789240003279].\u003c/li\u003e\n\u003cli\u003eTwigg J, Atkin K. Carers Perceived: Policy and Practice in Informal Care. Buckingham: Open University Press; 1994.\u003c/li\u003e\n\u003cli\u003eMovisie, Vilans. SOFA-model: samenwerken met mantelzorgers. 2021 [Available from: https://www.zorgvoorbeter.nl/tips-tools/tools/sofa-model-samenwerken-met-mantelzorgers].\u003c/li\u003e\n\u003cli\u003eMelin-Johansson C, Henoch I, Strang S, Browall M. Living in the presence of death: an integrative literature review of relatives\u0026apos; important existential concerns when caring for a severely ill family member. Open Nurs J. 2012;6:1-12.\u003c/li\u003e\n\u003cli\u003eWorld Health Organization. Palliative Care - Key facts. 2020. Available from: https://www.who.int/news-room/fact-sheets/detail/palliative-care\u003c/li\u003e\n\u003cli\u003eBressan V, Visintini C, Palese A. What do family caregivers of people with dementia need? A mixed-method systematic review. Health Soc Care Comm. 2020;28(6):1942-60.\u003c/li\u003e\n\u003cli\u003eDang S, Looijmans A, Ferraris G, Lamura G, Hagedoorn M. Exploring the needs of spousal, adult child, and adult sibling informal caregivers: A mixed-method systematic review. Front Psychol. 2022;13:832974.\u003c/li\u003e\n\u003cli\u003eHall S, Rohatinsky N, Holtslander L, Peacock S. Caregivers to older adults require support: A scoping review of their priorities. Health Soc Care Community. 2022;30(6):e3789-e809.\u003c/li\u003e\n\u003cli\u003eHoffst\u0026auml;dt HE, Boogaard JA, Tam MC, van Bodegom-Vos L, Stoppelenburg A, Hartog ID, et al. Practice of supporting family caregivers of patients with life-threatening diseases: A two-phase study among healthcare professionals. Am J Hosp Palliat Care. 2023;40(6):633-43.\u003c/li\u003e\n\u003cli\u003eLy S, Runacres F, Poon P. Journey mapping as a novel approach to healthcare: A qualitative mixed methods study in palliative care. BMC Health Serv Res. 2021;21(1):915.\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(1):83-100.\u003c/li\u003e\n\u003cli\u003eTrebble TM, Hansi N, Hydes T, Smith MA, Baker M. Process mapping the patient journey: an introduction. Bmj. 2010;341:c4078.\u003c/li\u003e\n\u003cli\u003eStoppelenburg A, van der Steen JT, van der Linden YM, Tam MC, Hartog ID, Hoffst\u0026auml;dt HE. Supporting family caregivers during the illness and after the death of their loved one, with special attention for individual needs, health skills and culturally sensitive communication. 2022. OSF registry [Available from: https://osf.io/57wm9].\u003c/li\u003e\n\u003cli\u003eBrown T. Design thinking. Harvard business review. 2008;86(6):84.\u003c/li\u003e\n\u003cli\u003eBoere W. Focus on family caregivers: Inspiring healthcare professionals to create and reflect on the journey of the family caregiver. 2021. Master thesis TU Delft [Available from: https://repository.tudelft.nl/record/uuid:2c82f893-b517-4989-96a2-7a79a69f67c4].\u003c/li\u003e\n\u003cli\u003eHoffst\u0026auml;dt HE, Stoppelenburg A, Tam MC, Hartog ID, van Bodegom-Vos L, Mertens BJA, et al. Improving support for family caregivers: a mixed-methods effect evaluation of an organizational intervention. Preprint MedRxiv 2025.09.08.25335005.\u003c/li\u003e\n\u003cli\u003eHsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-88.\u003c/li\u003e\n\u003cli\u003eATLAS.ti Scientific Software Development GmbH (2023). ATLAS.ti Windows version 24 [computer software].\u003c/li\u003e\n\u003cli\u003eBecqu\u0026eacute; YN, Rietjens JAC, van Driel AG, van der Heide A, Witkamp E. Nursing interventions to support family caregivers in end-of-life care at home: A systematic narrative review. Int J Nurs Stud. 2019;97:28-39.\u003c/li\u003e\n\u003cli\u003eHoffst\u0026auml;dt HE, Tam MC, Stoppelenburg A, Stoevelaar R, van Bodegom-Vos L, van der Steen JT, et al. What do family caregivers of patients with life-threatening diseases need from healthcare professionals? A qualitative study. BMJ Support Palliat Care. 2024;14(4):419-27.\u003c/li\u003e\n\u003cli\u003eParmar J, Anderson S, Abbasi M, Ahmadinejad S, Br\u0026eacute;mault-Phillips S, Chan K, et al. Support for family caregivers: A scoping review of family physician\u0026apos;s perspectives on their role in supporting family caregivers. Health Soc Care Community. 2020;28(3):716-33.\u003c/li\u003e\n\u003cli\u003eCowie J, Nicoll A, Dimova ED, Campbell P, Duncan EA. The barriers and facilitators influencing the sustainability of hospital-based interventions: A systematic review. BMC Health Serv Res. 2020;20(1):588.\u003c/li\u003e\n\u003cli\u003eBecqu\u0026eacute; YN, Rietjens JAC, van der Heide A, Witkamp E. How nurses support family caregivers in the complex context of end-of-life home care: A qualitative study. BMC Palliat Care. 2021;20(1):162.\u003c/li\u003e\n\u003cli\u003eDaddato AE, Gleason KS, Dollar BA, McPhail TE, Kraus CR, Boxer RS. Understanding experiences of caregivers of spouses with dementia during caregiver health care emergencies. Gerontologist. 2024;64(7).\u003c/li\u003e\n\u003cli\u003eBrookman R, Lipson-Smith R, Maurice O, McLlwain N, Hofstaetter L, DiGiacomo M, et al. Caring for people with dementia: Mapping the experience and journey from diagnosis. Gerontologist. 2025;65(5).\u003c/li\u003e\n\u003cli\u003eSmith L, Phillipson L. Using Journey Mapping to support staff, family members and allies of people with dementia to think and act differently during a care transition: The benefits and limits of care imagination. Dementia (London). 2022;21(6):1873-89.\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003e\u003cstrong\u003eTable 1\u003c/strong\u003e. Actions to improve the support for family caregivers as described in the action plans including quote illustrations.\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"1049\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 267px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCategory\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 612px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eQuote illustrations\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eHealthcare setting\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\" valign=\"top\" style=\"width: 1049px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eThe support for family caregivers as provided by healthcare professional\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 267px;\"\u003e\n \u003cp\u003eAttention for family caregivers\u0026rsquo; needs and wellbeing\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 612px;\"\u003e\n \u003cul\u003e\n \u003cli\u003e\u0026ldquo;The volunteer, nurse or coordinator pays attention to the wellbeing of family caregivers both upon arrival and after their visit to the patient.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;During the intake, the coordinator explores the needs of family caregivers across the four dimensions and documents them in the electronic medical record. These needs are revisited in follow-up conversations.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;With each close family caregiver of a patient, a conversation is held to identify and clarify their needs.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Inquire about needs that arise from the family caregiver\u0026rsquo;s cultural background.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Gain insight into the patient\u0026rsquo;s support system of the most involved family caregivers.\u0026rdquo;\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHome care\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHospital\u003c/p\u003e\n \u003cp\u003eTransmural\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 267px;\"\u003e\n \u003cp\u003eInformation provision\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 612px;\"\u003e\n \u003cul\u003e\n \u003cli\u003e\u0026ldquo;Family caregivers are informed about what to expect when their loved one stays in our hospice, both in terms of the support available to them and the medical information regarding the last phase of life.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;The family caregivers is informed by the nurse about the characteristics of the dying phase and is notified when this phase has begun.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Family caregivers receive practical information as nurses hand out brochures and/or show videos at designated times throughout the care process.\u0026rdquo;\u0026nbsp;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Offer information in a more paced manner, both in written and verbal form. Using information materials suited to the target population. Applying the teach-back method.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;[Workshop] participants (district nurses) noticed that they are frequently asked questions that nurse assistants seem less able to answer. Action points: more active involvement of district nurses in the care for patients in the palliative phase.\u0026rdquo;\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHospital\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHome care\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHome care\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 267px;\"\u003e\n \u003cp\u003eFamily caregivers\u0026rsquo; involvement in the patient\u0026rsquo;s care\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 612px;\"\u003e\n \u003cul\u003e\n \u003cli\u003e\u0026ldquo;At the time of admission, family caregivers are asked whether they wish to be involved in providing care to the patient and agreements are made accordingly. We facilitate opportunities for family caregivers to contribute to the patient\u0026rsquo;s care.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;The family caregiver (and the patient) is invited to be present during the multidisciplinary meeting in which the patient will be discussed.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Assessing the need whether or not family caregivers want to participate in patient care.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Family caregivers\u0026rsquo; resilience: signaling overburdening and repeated use of EDIZ questionnaire [validated Dutch questionnaire to assess caregiver burden].\u0026rdquo;\u0026nbsp;\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHospital\u003c/p\u003e\n \u003cp\u003eHome care\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 267px;\"\u003e\n \u003cp\u003eFamily caregivers\u0026rsquo; relationship to the patient\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 612px;\"\u003e\n \u003cul\u003e\n \u003cli\u003e\u0026ldquo;Structured attention for fulfilling the final wishes of patients and their family caregivers (\u0026hellip;). Wishes from children: what would you still like to do with your parent? Wishes from partners/other family caregivers: what would you still like to do together?\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Inform family caregivers about the possibility to create a meaningful memory (creative therapist, Ambulance Wish Foundation).\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;A sheet will be made available where volunteers can describe meaningful moments they had with a patient. These meaningful moments will be compiled and given as a keepsake to family caregivers.\u0026rdquo;\u0026nbsp;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;The team will make agreements about rooming-in. (\u0026hellip;) Family caregivers will have an introductory and evaluation conversation with the nurse about rooming-in.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Staff members know how to give a hand massage and how to use essential oils. They are also able to instruct family caregivers on, for example, how to give their loved one a hand massage.\u0026rdquo;\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHospital\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eNursing home\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 267px;\"\u003e\n \u003cp\u003eSupport after the patient\u0026rsquo;s death\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 612px;\"\u003e\n \u003cul\u003e\n \u003cli\u003e\u0026ldquo;The primary contact person of each patient who died will be contacted within one month by phone for a follow-up conversation, conducted by the nurse who was most involved in the days before the death.\u0026rdquo;\u0026nbsp;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;During the follow-up conversation, we use our clinical lens to evaluate the potential risk of complicated grief. If this risk is present, the questionnaire \u0026lsquo;Grief\u0026rsquo; [validated Dutch questionnaire to assess complicated grief] will be completed together with the family caregiver. If the results indicate complicated grief, a care plan can be developed and, if necessary, the case will be referred to a specialist.\u0026rdquo;\u0026nbsp;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Once a year, a gathering for bereaved family caregivers will be organized at the office, where they can come together with a palliative care nurse and a grief coach.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;To support family caregivers in their grieving process after the loss of a loved one, a follow-up conversation will take place immediately after the death (within 6 hours at the latest) and again three months later. During this conversation, the upcoming memorial service is also discussed.\u0026rdquo;\u0026nbsp;\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003eHospital\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHome care\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHome care\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eNursing home\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\" valign=\"top\" style=\"width: 1049px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eActions on the organizational or team level to improve support for family caregivers\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 267px;\"\u003e\n \u003cp\u003eProtocols, guidelines and working agreements\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 612px;\"\u003e\n \u003cul\u003e\n \u003cli\u003e\u0026ldquo;The coordinator will develop a guideline on how medical interventions should be communicated to the family caregivers, ensuring that all nurses do this in a consistent manner.\u0026rdquo;\u0026nbsp;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;The coordinator will develop a step-by-step protocol with regard to patients who are transferred to another facility or return home, including specified contact moments with the patient and their family caregivers.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;The coordinator will develop a step-by-step protocol outlining the specific moments at which contact is established with bereaved family caregivers for the follow-up conversation.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;A checklist will be implemented to document support needs of family caregivers along with a specification of which healthcare professionals will be responsible for addressing these needs.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;The care plan will include the role of family caregivers and the needs they have.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;An overview will be created listing the actions carried out during the terminal and palliative phase. This includes actions related to the patient, but also to the family caregivers. This overview will clearly indicate when each action is initiated and who is responsible for it.\u0026rdquo;\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHome care\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHome care\u003c/p\u003e\n \u003cp\u003eNursing home\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 267px;\"\u003e\n \u003cp\u003eTraining and education\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 612px;\"\u003e\n \u003cul\u003e\n \u003cli\u003e\u0026ldquo;Support for family caregivers will be incorporated in the basic training for volunteers. The onboarding program for nurses will be adjusted.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;[Organizing a] theme month: practical information for family caregivers. July \u0026gt; clinical lesson on which brochures can be handed out / which videos and how to register this.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Organizing a training session on professional communication skills for nurses.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Inviting an \u0026lsquo;expert by experience\u0026rsquo;.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Training session focused on raising awareness and on having attention for the needs of family caregivers during the palliative phase.\u0026rdquo;\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHospital\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHome care\u003c/p\u003e\n \u003cp\u003eHome care\u003c/p\u003e\n \u003cp\u003eNursing home\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 267px;\"\u003e\n \u003cp\u003eTools\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 612px;\"\u003e\n \u003cul\u003e\n \u003cli\u003e\u0026ldquo;An information sheet will be created with a checklist outlining key points to consider when conducting a follow-up conversation.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;An inventory will be made of the support available for family caregivers within the social care sector. A \u0026lsquo;care map\u0026rsquo; will be developed, including relevant disciplines, institutions and contact information from both internal and external sources of support for family caregivers.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;The project team will collect brochures that can be handed out during the dying phase.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;A family room will be set up in the geriatrics department.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;\u0026lsquo;Conversation cards\u0026rsquo; will be developed that align with the traditions, culture and language of (bereaved) family caregivers. These cards will be used in a training for healthcare professionals.\u0026rdquo;\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHome care\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHome care\u003c/p\u003e\n \u003cp\u003eHospital\u003c/p\u003e\n \u003cp\u003eNursing home\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 267px;\"\u003e\n \u003cp\u003eInterprofessional collaboration\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 612px;\"\u003e\n \u003cul\u003e\n \u003cli\u003e\u0026ldquo;During clinical handovers, the support for family caregivers will be discussed daily, including a clear indication of who is responsible for each aspect.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Nurses will document in the patient\u0026rsquo;s file which brochures have been handed out or which videos have been viewed.\u0026rdquo;\u0026nbsp;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;An overview will be created specifying who is responsible for each action and at which stage of the disease/dying process the action is to be carried out.\u0026rdquo;\u0026nbsp;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Consultation/feedback to the GP/practice nurse.\u0026rdquo;\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003eHospice\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHospital\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eNursing home\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eTransmural\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 267px;\"\u003e\n \u003cp\u003eSupport for healthcare professionals\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 612px;\"\u003e\n \u003cul\u003e\n \u003cli\u003e\u0026ldquo;Within the teams, a team member is appointed, or a buddy system is used, so that staff members always have someone to talk to or share concerns with.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Team members can call each other when needed.\u0026rdquo;\u003c/li\u003e\n \u003cli\u003e\u0026ldquo;Aftercare conversations will take place [with healthcare professionals following the death of a patient] either individually or in a group setting. A team coach is present during these sessions.\u0026rdquo;\u0026nbsp;\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 170px;\"\u003e\n \u003cp\u003eHome care\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHome care\u003c/p\u003e\n \u003cp\u003eNursing home\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[{"identity":"595dbf37-4257-4124-b1a9-e5fff35def14","identifier":"10.13039/501100001826","name":"ZonMw","awardNumber":"844001706","order_by":0}],"hasAdminPriorityOnWorkflow":true,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"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":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"","lastPublishedDoi":"10.21203/rs.3.rs-8219975/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8219975/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground / aim:\u0026nbsp;\u003c/strong\u003eFamily caregivers play a crucial role in supporting and caring for patients with life-threatening diseases. Providing this care can be rewarding but can also pose a great burden on family caregivers. Therefore, support is needed to address their problems and needs. However, systematic support for family caregivers is often lacking within healthcare organizations. To bridge this gap, a Family Caregiver Journey Workshop was developed as an implementation tool to help healthcare organizations enhance structural support for family caregivers. The\u0026nbsp;aim of this study was to investigate the \u0026nbsp;output of this workshop and to evaluate its process\u0026nbsp;.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods:\u0026nbsp;\u003c/strong\u003eThe workshop was conducted in 19 healthcare organizations (7 home care organizations, 6 hospices, 3 nursing homes, 2 hospitals, 1 transmural organization). Each organization assembled a group of healthcare professionals to conduct the workshop and develop an action plan based on its outcomes. Subsequently, a focus group with participants from different organizations was held to evaluate their experiences with the workshop. The action plans and the focus group transcript were analyzed using conventional content analysis.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults:\u0026nbsp;\u003c/strong\u003eThe action plans described various goals, activities, timelines and responsibilities. Goals focused on (1) direct support for family caregivers and (2) preconditions on the team and organizational level. Planned activities for family caregivers included systemically addressing their needs and wellbeing, improving information provision, supporting their involvement in patient care, strengthening patient-caregiver relationships, and offering bereavement support. Activities at the team or organizational level included developing protocols, guidelines and tools, providing training and education, fostering interprofessional collaboration, and supporting healthcare professionals. Healthcare professionals across all healthcare settings considered the workshop a useful tool to reflect on current practices and identify concrete improvements in supporting family caregivers.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion:\u0026nbsp;\u003c/strong\u003eThe Family Caregiver Journey Workshop is a valuable implementation tool for healthcare professionals to reflect on their current practice of supporting family caregivers and to set targeted improvement goals.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTrial registration:\u0026nbsp;\u003c/strong\u003eOpen Science Framework (OSF), preregistration 2022: Supporting family caregivers during the illness and after the death of their loved one, with special attention for individual needs, health skills and culturally sensitive communication\u003cstrong\u003e.\u0026nbsp;https://osf.io/57wm9/overview\u003c/strong\u003e\u003c/p\u003e","manuscriptTitle":"Improving support for family caregivers in palliative care through journey mapping: a qualitative study across 19 healthcare organizations","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-12-03 11:32:26","doi":"10.21203/rs.3.rs-8219975/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"45f91b2c-c531-4dea-af33-84fcd1aa8252","owner":[],"postedDate":"December 3rd, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-12-03T11:32:26+00:00","versionOfRecord":[],"versionCreatedAt":"2025-12-03 11:32:26","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8219975","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8219975","identity":"rs-8219975","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}