The Illness Experience: A qualitative study to explore the patients' lived experiences in a palliative care setting in Rwanda

The Illness Experience: A qualitative study to explore the patients' lived experiences in a palliative care setting in Rwanda | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Article The Illness Experience: A qualitative study to explore the patients' lived experiences in a palliative care setting in Rwanda Evelyne Nankundwa, Madeleine Mukeshimana, Clementine Kanazayire, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7196430/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 11 You are reading this latest preprint version Abstract As more people live with chronic and life-limiting illnesses, the need for accessible and holistic palliative care is growing. Palliative care supports quality of life by addressing physical, emotional, social, and spiritual needs. Good communication, clear information, and emotional support help patients cope and make informed choices. The aim of this study is to explore the lived experiences of people receiving palliative care, focusing on how they understand and live with their illness A phenomenological design was used. Semi-structured interviews were conducted with chronically ill patients selected through purposive sampling. Data were analyzed thematically. Findings highlight four major themes: (1) Changes driven by disease (2) Experiencing uncertainty (3) Communication and information, and (4) support needs. In conclusion, advanced chronic illness within palliative care significantly alters patients’ perceptions of life, disrupts daily routines, and redefines social roles. Their journeys are often shaped by emotional distress, uncertainty, and a profound search for meaning. Ensuring clear communication and providing reliable information are essential to support patients’ understanding, informed decision-making, and emotional well-being. Health sciences/Health care Humanities/Health humanities Humanities/Medical humanities Lived experiences Palliative care Transition to care Incurable illness End-of-life care chronic illness Rwanda Introduction As chronic illness progresses, coping with its effects becomes a key part of everyday life, highlighting the benefit of introducing palliative care early. This care model focuses on holistic, person-centred care, addressing the physical, emotional, social, and spiritual needs for patient and family. By providing timely and comprehensive care for the complex challenges of serious illness, palliative care improves quality of life and promotes overall well-being at every stage of the disease 1 , 2 . Palliative care, as defined by the International Association for Hospice and Palliative Care (IAHPC), is an active and holistic approach to alleviating serious health-related suffering across all age groups. It is particularly vital for individuals facing severe illness or nearing the end of life 3 , 4 . In low- and middle-income countries (LMICs), palliative care is still developing, yet demand continues to grow due to the increasing prevalence of cancer and other life-threatening non-communicable diseases (NCDs). Several factors contribute to this growing need, including restricted access to essential services, such as pain management, late-stage diagnoses, healthcare system limitations, and socio-cultural influences 5 , 6 . Rwanda has made notable progress in integrating palliative care into its healthcare system, improving access to essential care and medications for patients with chronic non-communicable diseases 7 . However, the growing number of people living with serious illnesses, especially non-cancer long-term conditions, has increased the demand for palliative care, which points to the further expansion and improvement of these services. As a result, the demand for palliative care far exceeds the capacity of existing services, and most patients with advanced disease face unmet needs 8 – 10 . Indeed, in Rwanda, as in many low settings, healthcare systems are structured around vertical, disease-specific programs that focus on individual conditions, while, these models can be effective for targeted disease control, they often fail to address the complex, multidimensional needs of patients requiring palliative care. These models often fall short in addressing the complex and multidimensional needs of patients requiring palliative care. As patients with life-limiting illnesses frequently experience fragmented, uncoordinated care and mixed information, leading to delays in seeing palliative care support 11 . Timely and accurate diagnosis is a critical step in initiating appropriate palliative care, as it helps patients and families understand the illness and make informed choices. However, in low-resource settings like Rwanda, diagnostic delays are common. When patients experience a significant deterioration in their condition before diagnosis, they miss the opportunity to receive timely and well-coordinated palliative care integrated with other treatments 12 – 14 . Past research has found that delays in diagnosis, combined with limited information about disease progression, often lead to persistent uncertainty and unclear prognoses in progressive illnesses. This uncertainty increases psychological distress and undermines patients’ ability to plan and cope effectively. Providing patients with clear information is crucial in helping them adapt and maintain a sense of control throughout their illness 15 – 17 . Communication is broadly acknowledged as essential throughout the illness trajectory and the transition to palliative care, as patients face numerous physical, emotional, and existential changes that require ongoing adjustment 18 , 19 . A wide range of research and clinical recommendations highlight that transparent, compassionate conversations enable patients and their families to understand the prognosis and care objectives, promote shared decision-making and informed choices, and help ease anxiety, uncertainty, and emotional strain. Such communication also ensures that care aligns with the patient's personal values and preferences 20 , 21 . In addition, communication that is cultural plays a crucial role in improving palliative care for individuals with chronic, progressive illnesses. By respecting and incorporating patients’ values and belief systems, it helps ensure care is more personalized and meaningful. This approach also strengthens trust, encourages honest conversations, and supports joint decision-making, ultimately leading to more compassionate and patient-centred care 22 , 23 . Additionally, understanding medical information and the ability to navigate the healthcare system are crucial for patients. By building trust and fostering clear communication, healthcare providers promote active patient involvement in decision-making, ensuring that care aligns with patients’ preferences. Ultimately, this leads to more person-centred, respectful, and effective care throughout the illness journey 24 , 25 . This study seeks to gain a deep understanding of the lived experiences of patients in Rwanda living with chronic illnesses and receiving palliative care, focusing on how they perceive and navigate their illness journey amid serious health conditions. Research on patients’ experiences with palliative care in Rwanda remains limited, as existing studies have predominantly focused on palliative care needs and healthcare providers rather than patients’ personal perspectives. Much of the published literature on palliative care also originates from high-resource settings, which may not fully reflect the challenges and realities faced in Rwanda’s low-resource context. Methods Design This study employed a qualitative approach using a phenomenological design to gain an in-depth understanding of the experiences of patients living with incurable illnesses and receiving palliative care. Phenomenology emphasizes exploring experiences from the patient’s unique perspective, capturing the meanings they assign to their illness journeys and significant life transitions such as the shift to palliative care 26 . Setting The study was conducted at a teaching hospital in Rwanda known for its leadership in integrating palliative care into routine healthcare services. Palliative care has been incorporated across all hospital departments and extended to home-based care through collaboration with community health workers. Despite its recognized role in advancing palliative care, the hospital does not have a dedicated palliative care unit. Instead, patients in need of palliative care are typically managed within general wards, alongside those receiving treatment for other medical conditions. Participants and sample size The study was carried out at a teaching hospital in Rwanda recognized for its pioneering efforts in incorporating palliative care into standard medical practice. Palliative care services are available across all hospital departments and have been expanded into the community through home-based care supported by community health workers. A purposive sampling strategy was employed to recruit a diverse group of participants, ensuring variation in age, gender, and the types of complex health conditions represented. Eligible participants were adults aged 18 years and older, diagnosed with advanced chronic illnesses such as cancer, chronic obstructive pulmonary disease (COPD), HIV/AIDS, and other progressive, life-limiting conditions. All participants were actively receiving palliative care services at the time of data collection. Inclusion criteria required that individuals be cognitively competent and capable of providing informed consent, thereby upholding ethical standards and ensuring the credibility of the data collected. Exclusion criteria included individuals with chronic illnesses who were receiving exclusively curative (non-palliative) treatments; those with cognitive impairments or altered mental status that impeded their ability to provide informed consent or participate meaningfully in interviews; and non-patients such as family members. A total of twelve participants were included in the study, with the sample size determined by the principle of data saturation. Data collection continued until no new themes or insights emerged, ensuring depth and comprehensiveness in the findings. Saturation was reached by the tenth interview, after which two additional interviews were conducted to confirm that no further novel information was being generated. These final interviews validated that data saturation had been achieved, as no new concepts or patterns were identified 27 Interview guide The interview guide was created by two researchers (NE and KC) following an extensive review of palliative care literature, with a focus on the lived experiences of patients receiving palliative care for serious illnesses in low-resource settings. To ensure relevance, coherence, and alignment with the study objectives, a multidisciplinary team of palliative care clinicians and researchers reviewed the guide. Their feedback helped refine the content, improve clarity, and maintain focus on core research questions. The guide was translated into Kinyarwanda and back-translated into English to verify linguistic accuracy and conceptual equivalence. A pilot test assessed the guide’s clarity, cultural appropriateness, and usability. Insights from this process informed final adjustments, resulting in a contextually suitable tool for eliciting rich, meaningful data. The primary questions centred on patients’ experiences living with chronic illness while receiving palliative care, covering their journey from diagnosis through disease progression. Key questions included: Can you describe your experience of living with your illness, from diagnosis to present? What aspects of your life have changed most since your diagnosis? How has communication with healthcare providers affected your involvement in care decisions? How have family members contributed to and influenced your illness management? Data collection The interviews were guided by a semi-structured protocol composed of open-ended questions designed to encourage detailed, reflective responses. Conducted by the principal investigator (NE), a PhD candidate with expertise in qualitative research and a background in nursing education and critical care, each interview lasted between 40 and 60 minutes. The discussions focused on participants’ experiences of communication and involvement in care-related decision-making throughout the course of their illness. To ensure consistency across interviews, each session began with a core set of standardized questions, allowing all participants to reflect on key themes. Follow-up probing questions were used flexibly to deepen the discussion and elicit richer, more contextually grounded insights. All interviews were conducted by NE, who had no prior relationship with the participants, were audio-recorded, and transcribed verbatim. At the start of each interview, NE introduced herself and explained the study’s purpose. To maintain confidentiality, transcripts were anonymized, and pseudonyms were assigned to participants and used in all study documents. Participants were informed that they could withdraw from the interview at any time without giving a reason. Alongside the recordings, the principal investigator took field notes during interviews to capture contextual details and initial impressions that enriched data interpretation. Additional notes were made during data analysis, especially while reviewing transcripts, to deepen understanding and support theme development. Data collection continued until saturation was reached, that is, when no new themes or information emerged. Data Analysis The data were analyzed using Interpretative Phenomenological Analysis (IPA), a qualitative methodology that focuses on exploring how individuals make sense of their lived experiences. This approach allowed for an in-depth examination of participants’ personal interpretations and the meanings they attributed to their illness journeys [20]. Once transcribed, the interviews were analyzed. The Smith and Osborn’s approach guided the data analysis through a systematic, multi-step process [21]. The data analysis followed a systematic, multi-step approach. Initially, all interviews were transcribed verbatim and reviewed multiple times to ensure thorough familiarity with the content, allowing for the identification of preliminary themes. These initial themes were then refined and organized into broader conceptual categories. The next step involved examining relationships among themes to uncover overarching patterns across the data. Each participant’s account was subsequently analyzed in depth to preserve the uniqueness of individual experiences. A cross-case analysis was then conducted to identify commonalities and differences across narratives. Finally, a coherent thematic narrative was constructed, rooted in participants’ lived experiences and integrating both individual perspectives and shared meanings. Data were systematically organized, coded, and categorized using ATLAS.ti 7.1 software. The study used Interpretative Phenomenological Analysis (IPA) to center participants’ perspectives, with initial transcript review by the principal investigator. Line-by-line coding was independently performed by two researchers (NE and MF) and refined collaboratively with the broader team through consensus. Credibility was strengthened through peer debriefings, operational definitions, thematic mapping, and use of verbatim quotes. Transcripts were revisited for accuracy, a qualitative memo was maintained for analytical rigour, and all data were securely stored. Ethics approval This study was conducted in accordance with the ethical standards outlined in the Declaration of Helsinki, the internationally recognized code of ethics developed by the World Medical Association. Ethical approval was obtained from the Institutional Review Board of the University of Rwanda (No. 047/CMHS IRB/2022), the Rwanda National Ethics Committee (No. 107/RNEC/2022), and other relevant regulatory bodies. Participants were assured of confidentiality, with identifying information pseudonymized, and were informed of their right to withdraw from the study at any time without any impact on their care. Both oral and written informed consent were obtained to ensure that participants’ rights were fully respected throughout the study. Results Characteristics of the Participants The study sample comprised twelve participants, evenly distributed by gender (six women and six men), with ages ranging from 31 to 72 years (mean age = 51.2 years). Marital status varied among the participants, including four individuals who were married, one widowed, three single, and four divorced. The majority of participants were living with multiple comorbidities in addition to their primary diagnosis, reflecting the complex and multifaceted nature of their health challenges. (Table 1 ) Table 1 Characteristics of the Participants Participant ID Age Range Gender Marital Status Diagnosis PTO1 40–49 M Divorced HIV, Post-TB Complications, Lung fibrosis PTO2 40–49 F Married Post-TB Complications, Lung fibrosis PTO3 30–39 M Single Advanced Cirrhosis PTO4 40–49 M Divorced Advanced HIV- Lung Fibrosis post- TB PTO5 40–49 M Divorced HIV and Opportunistic Infections PTO6 50–60 M Married Advanced kidney disease PTO7 30–39 F Married Advanced Cancer of the knee PTO8 70–79 M married Advanced prostate cancer and diabetes PTO9 50–59 F widowed Advance HIV, lungs fibrosis PTO10 30–39 F Single Myasthenia gravis PTO11 40–49 F Divorced Advanced cancer and HIV PTO12 40–49 F Single Hepatic-Pulmonary Failure, Lung Fibrosis Thematic results The analysis identified four key themes from the study data: (1) Changes driven by the disease, (2) Experiencing uncertainty, (3) Communication and access to information, and (4) Need for support (see Table 2 ). Table 2 Themes and Subthemes Categories Subcategories 1. Changes driven by disease: 1 : Patients experienced changes in normal life. 2. Diagnosis process 2. Experiencing uncertainty 1. Unpredictability of Disease Progression 2 Accepting the Reality of the Situation 3.Communication and information 1: Access to Accurate and Comprehensive Information: 2: Limited interaction and discussion with healthcare providers Need for support 1.Being supported by family Theme 1: Changes driven by disease. From the participants’ perspective, living with a serious, chronic, progressive illness evokes a wide range of emotions and responses that depend on how they personally experience and interpret their condition. Many reported that frequent medical visits during the diagnostic process disturbed their daily routines, with many feeling that the illness was taking over and controlling everything. Patients experienced changes in normal life. Most of the participants reported significant changes to their everyday lives as a result of their illness, highlighting disruptions to their daily routines as noticed: This disease… (cancer) brings changes to every aspect of life. I don’t feel like the person I used to be. Before, I would wake up early, go to my little job, and take care of my family without any problems. There were things I used to do automatically, without even thinking now I realize how important they were . …. (P11). I used to take care of my old mother, but now I can’t. I don’t have the strength anymore, and it makes me really sad because she depends on me. I also had to stop my small business. Now, it’s like we’ve lost all control. We can’t do anything … (P9). Diagnosis process Many participants reported delays in receiving an accurate diagnosis, often having to visit multiple health facilities during this challenging journey. As a result, some turned to alternative options, such as traditional healers, in search of answers and support. It wasn’t easy... I kept moving from one hospital to another. Waiting in long lines while doing many tests that felt never-ending ... waiting for results takes days or weeks; I wondered what story the results would reveal…(P2). …When they said it might be cancer, I thought I had been bewitched (barandoze) because I couldn’t understand how this situation could happen to me. As things became complicated for me, we looked for other solutions. We went to a traditional healer who gave us herbs for my leg and for the wound. But I continued to have more pain, and my wound was not healing…Nothing changed, and I kept suffering ." (P 7) “In the beginning, I believed this illness was something only God could handle. I knew some priests in my village, so we went, and he prayed for me.” (P3) Theme 2: Experiencing uncertainty Many participants experienced deep uncertainty about their illness as it progressed, largely due to a poor understanding of their condition. The lack of clear explanations from healthcare providers left them confused, anxious, and unprepared for what lay ahead. Unpredictability of Disease Progression Many participants had a limited understanding of their condition and were uncertain about how the disease might progress over time as participants shared; … I didn’t really understand what was happening to me or how bad it was. I lost so much weight that people thought I had AIDS. I think some doctors thought the same, but they didn’t tell me. I’ve been on TB medicine for two years, but I still feel unwell and have trouble breathing. I keep asking myself what’s really wrong and what will happen to me …(P9) …. I never imagined things would reach this point. When I found out I would need to rely on this machine (oxygen) to survive, it felt like I might never return home. Even now, I still don’t know what’s going to happen, I don’t see how I could ever have this machine at home. (p4) Accepting the Reality of the Situation As their illness progressed, participants realized their situation was beyond control, enabling them to accept reality as it is and find peace despite ongoing challenges. … At first, I was very angry and kept asking why this was happening to me. The doctors told me I have a lung problem that can’t be cured, which makes it hard to breathe. Slowly, I realized some things are just out of my control. For my family, I had to accept it and learn to live with it (P2). …. They told me my condition couldn’t be healed, and even though it was hard to understand, I trusted that the doctor knew what was best. So, I accepted it and started focusing on living one day at a time (P1). Theme 3. Communication and Information Effective communication and access to accurate information were major challenges for participants throughout their illness journey from the time of diagnosis to the point when they had to adjust to a new way of living. These barriers significantly delayed their involvement in decision-making. Access to Accurate and Comprehensive Information : Participants consistently reported difficulties in getting clear, complete, and understandable information about their illness, which limited their ability to take an active role in healthcare decisions, as participants expressed: When the results came out, the doctor pointed to an area in the picture and said it might be something serious that the part that, was swollen didn’t look normal. I looked at the image, but I didn’t really understand what he meant. Later, he said it could be cancer and that they needed to take a sample to be sure. I didn’t catch all the details, but deep down, something in me just knew it was cancer (P7). … I went to many hospitals and saw different doctors. In the end, they gave me a diagnosis. They said it was a rare disease, but I didn’t really know what that meant. I asked the nurses to explain, but no one made it clear to me. So I began searching for answers on my own. That’s when I found out I had a muscle disease, the kind that makes your body weak and tired all the time. Now, I can’t work anymore.” (P 10). Limited interaction and discussion with healthcare providers Participants experienced minimal engagement with healthcare providers in an environment that felt unconducive to open communication. Conversation was often brief, providing little opportunity to participate in meaningful dialogue, which hindered their understanding and involvement in decision- making. … I understand that doctors are very busy and have many patients to see, so their visits are often short… I wish they could spend a little more time with me so I can ask questions about my condition and make informed decisions about how to live with my illness (P5). Another mentioned: …… As you can see, we are many in one room, and expressing their concerns openly with the doctor it is challenging. In our family, we like to keep personal matters private. We don’t speak out loud about our problem; we keep them inside and try to appear strong. But the doctor always comes with the whole team, so we don’t feel free to openly talk about our problems (P1). Theme 4: Need for support . Participants highlighted the importance of family support. Some relied on loved ones for care and comfort, while others faced their illness alone. Being supported by family Participants emphasized the supportive role of the family in helping them manage their illness, providing reassurance, and improving their overall well-being. As participants mentioned: My family has been with me since the beginning; through all the pain and suffering, we’ve faced this illness together. They do everything for me. They pray for me, buy my medication, and give me the strength to keep going. Their support means everything. But sometimes I wonder… until when? I feel like I’ve lost my dignity as a man (P8). During the first year of my illness, my family used to visit me often. I felt their presence, and it gave me strength. But now... things have changed. They seem busy… maybe tired of it all. Even my husband doesn’t come anymore (P4). Discussion This study explored the experiences of patients with incurable illnesses receiving palliative care in one hospital in Rwanda. Given the reality of a low-income setting and cultural differences in this country, together with the lack of previous research on this topic here, this study offered insights into the experiences of these participants. All were assigned to a palliative care service, but not all were aware of this status. Our study reveals that the illness was perceived by patients as a fundamental change in their way of living. For many participants, the onset of the illness marked a significant shift from their usual routines and their usual way of approaching life. Many experienced alterations in their daily activities, which in turn affected their level of independence and increased their dependency on others. Our findings align with previous research indicating that individuals living with chronic illness often experience a negative shift in their perception of life. These outcomes are characterized by difficulties in managing employment, frequent medical appointments, and a sense that the illness dictates their daily lives and overall autonomy 28 . This study additionally revealed that the diagnostic process was often prolonged, causing significant delays in reaching an accurate diagnosis. These delays not only made it difficult for participants to access clear information about their illness early on and receive timely palliative care but also pushed many to seek help from traditional healers in search of support and comfort. In many low-income countries, delayed diagnosis is a common issue due to limited healthcare infrastructure, lack of diagnostic tools, and shortages of trained professionals. In African settings, cultural beliefs and traditions strongly influence care-seeking behaviors. Once biomedical explanations are delayed or difficult to understand, patients often turn to traditional healers and spiritual leaders, who are seen as trusted sources of support and guidance. This movement between traditional and formal healthcare systems can shape patients’ understanding of their illness and impact how they interact and collaborate with healthcare provider 29 , 30 . In addition, participants’ uncertainty was strongly linked to their limited understanding of the illness and how it would progress. Because their condition was not clearly explained, many felt confused, anxious, and unprepared for what lay ahead. As found in previous studies, uncertainty often stems from unpredictable symptoms, unclear prognoses, and the absence of curative treatment options. When this uncertainty is not addressed, it can lead to emotional distress, including anxiety, depression, and a reduced quality of life. These findings highlight the need for timely, honest, and compassionate communication in palliative care. Such communication helps patients understand their condition and cope emotionally. It builds trust, reduces uncertainty, and encourages shared decision-making. Without it, patients may feel isolated, confused, and less involved in their care 16 , 17 , 31 , 32 . The results reveal that a lack of effective communication and accessible information significantly hindered patients’ understanding of their condition and their ability to make informed treatment decisions. patient involvement in decision-making was limited. Participants described having only limited conversations with healthcare providers and not enough time for meaningful discussions. In addition, many felt that doctors made all the decisions, simply because they were viewed as the experts. Existing literature supports the finding that effective communication is essential in managing chronic illness within palliative care. When healthcare providers offer clear, consistent, and compassionate explanations about diagnoses, treatment options, and disease progression, patients are more empowered to make informed choices and actively participate in their care 33 , 34 . However, as demonstrated in this study, when effective communication is lacking, patients often struggle to understand their condition, feel excluded from decision-making, and tend to adopt a passive role, placed full trust in the physician’s decisions. Through the philosophy of palliative care, family involvement is seen as essential, especially since hospital stay remove patients from their familiar and supportive social environment 35 , 36 In Rwanda, the saying "When you are well, you belong to yourself, but when you are sick, you belong to your family’ illustrates the deep cultural role families play in caregiving 37 . Families provide emotional support, a sense of identity, and hope, often becoming central in care and decision-making. Participants recognized this support as vital to maintaining their dignity and emotional well-being. Limitations of the study This study provides valuable insights into the experiences of patients with chronic illnesses receiving palliative care. However, several limitations should be considered. While participants had a range of conditions, the study may not fully capture the unique challenges and needs associated with each specific illness. Additionally, conducting the study in an environment where palliative care is still developing may limit the applicability of the findings to settings with more established palliative care systems. Furthermore, the exclusion of family members from the study limits the understanding of the full palliative care experience, as family dynamics and support play a critical role in the care and emotional well-being of patients during this phase. Conclusion This study offers significant insights into the lived experiences of patients with chronic illnesses undergoing palliative care in Rwanda. The findings reveal that a diagnosis of chronic illness leads to significant changes in patients’ lives, often accompanied by uncertainty and the need to accept the reality of their situation. Clear communication and strong support, including family involvement and spiritual resources, are crucial in helping patients navigate these challenges and maintain their well-being. Declarations Acknowledgments The authors extend their sincere gratitude to the palliative care team at the hospital for their invaluable support in facilitating access to participants for this study. Author contributions All authors meet the criteria for authorship. E.N., M.M., C.K., and F.M. each made significant contributions to the research, including the conception and design, data acquisition, and analysis and interpretation. E.N. and F.M. led the drafting of the main manuscript, while C.K. and M.M. critically revised the text and tables. All authors reviewed and approved the final version of the manuscript for publication. Funding This study received no external funding. Competing interests The authors have no competing interests Additional information Requests for materials and correspondence should be directed to E.N Availability of data and materials Data supporting the findings of this study are not publicly available due to ethical concerns related to participant privacy and confidentiality. However, they may be made available by the corresponding author upon reasonable request, subject to approval by the relevant ethical review board. References Laursen, L., Schønau, M. N., Bergenholtz, H. M., Siemsen, M. & Christensen, M. Table in the corner: a qualitative study of life situation and perspectives of the everyday lives of oesophageal cancer patients in palliative care. 1–10 (2019). Ahmed, S. Patient and Caregiver Experiences Living with Advanced Colorectal Cancer & Receiving Early Palliative Care in Alberta. (2020). Clelland, D. et al. Palliative Care in Public Policy: Results from a Global Survey. 1, 183–190 (2020). Radbruch, L. et al. 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Uncertainty in illness in family caregivers of palliative care patients and associated factors. (2019). 10.1590/1518-8345.3185.3200 Guo, P. et al. Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study. Palliat. Med. 36 , 124–134 (2022). Paladino, J. et al. Improving serious illness communication: a qualitative study of clinical culture. BMC Palliat. Care 22 , (2023). Milberg, A., Liljeroos, M., Wåhlberg, R. & Krevers, B. Sense of support within the family: A cross-sectional study of family members in palliative home care. BMC Palliat. Care . 19 , 1–16 (2020). João, M., Teixeira, C., Abreu, W., Costa, N. & Maddocks, M. Understanding family caregivers ’ needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal. 1–11 (2020). Ntizimira, C., Deo, M. S., Dunne, M. & Krakauer, E. Decolonizing end-of-life care: lessons and opportunities. ecancermedicalscience 16, (2022). Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 25 Feb, 2026 Reviews received at journal 10 Oct, 2025 Reviewers agreed at journal 04 Oct, 2025 Reviews received at journal 03 Oct, 2025 Reviewers agreed at journal 01 Oct, 2025 Reviewers agreed at journal 30 Sep, 2025 Reviewers invited by journal 07 Aug, 2025 Editor assigned by journal 07 Aug, 2025 Editor invited by journal 29 Jul, 2025 Submission checks completed at journal 28 Jul, 2025 First submitted to journal 28 Jul, 2025 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. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7196430","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Article","associatedPublications":[],"authors":[{"id":498884818,"identity":"c8c6b018-b214-44ff-8469-693d5d20edf0","order_by":0,"name":"Evelyne Nankundwa","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAuklEQVRIiWNgGAWjYHACZhAhx8DAA6WJ1WIM1WJMvJbEBqK1mLOfPWzwsc0mfcPxswcffGAwyCeoxbInLzlxZlta7oYzecmGMxgMLBsIaTE4kGN8mOfM4dwNB3LMpHkY/hgQtMXg/Bvjw3/O/E8HMkBaDIjQciPHOJmh4kACkEG0ljfGhj0VyYYzQYwZBsRoOZ9jLPHDwE6e73yO4YMPFURogQOFA2ATiNfAwCDfQIrqUTAKRsEoGFEAAC/fOoaBbtWpAAAAAElFTkSuQmCC","orcid":"","institution":"University of Rwanda","correspondingAuthor":true,"prefix":"","firstName":"Evelyne","middleName":"","lastName":"Nankundwa","suffix":""},{"id":498884819,"identity":"01d47fd5-700b-4c3f-b9ec-2bc67cf4b581","order_by":1,"name":"Madeleine Mukeshimana","email":"","orcid":"","institution":"University of Rwanda","correspondingAuthor":false,"prefix":"","firstName":"Madeleine","middleName":"","lastName":"Mukeshimana","suffix":""},{"id":498884820,"identity":"d7a043ab-17ef-47d6-807c-667d4415ed40","order_by":2,"name":"Clementine Kanazayire","email":"","orcid":"","institution":"University of Rwanda","correspondingAuthor":false,"prefix":"","firstName":"Clementine","middleName":"","lastName":"Kanazayire","suffix":""},{"id":498884821,"identity":"9790da49-2be1-4bd3-9d43-6589312c7ed3","order_by":3,"name":"Fitch Margaret","email":"","orcid":"","institution":"University of Toronto","correspondingAuthor":false,"prefix":"","firstName":"Fitch","middleName":"","lastName":"Margaret","suffix":""}],"badges":[],"createdAt":"2025-07-23 12:38:21","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7196430/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7196430/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":89072895,"identity":"783c97ac-6339-4d95-bccf-4bb58cc25dd3","added_by":"auto","created_at":"2025-08-14 11:32:52","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":779447,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7196430/v1/68ed91a7-f163-4e36-af60-bbc226b57d5c.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"The Illness Experience: A qualitative study to explore the patients' lived experiences in a palliative care setting in Rwanda","fulltext":[{"header":"Introduction","content":"\u003cp\u003eAs chronic illness progresses, coping with its effects becomes a key part of everyday life, highlighting the benefit of introducing palliative care early. This care model focuses on holistic, person-centred care, addressing the physical, emotional, social, and spiritual needs for patient and family. By providing timely and comprehensive care for the complex challenges of serious illness, palliative care improves quality of life and promotes overall well-being at every stage of the disease \u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e,\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u003c/sup\u003e. Palliative care, as defined by the International Association for Hospice and Palliative Care (IAHPC), is an active and holistic approach to alleviating serious health-related suffering across all age groups. It is particularly vital for individuals facing severe illness or nearing the end of life \u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e,\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u003c/sup\u003e. In low- and middle-income countries (LMICs), palliative care is still developing, yet demand continues to grow due to the increasing prevalence of cancer and other life-threatening non-communicable diseases (NCDs). Several factors contribute to this growing need, including restricted access to essential services, such as pain management, late-stage diagnoses, healthcare system limitations, and socio-cultural influences \u003csup\u003e\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e,\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u003c/sup\u003e. Rwanda has made notable progress in integrating palliative care into its healthcare system, improving access to essential care and medications for patients with chronic non-communicable diseases \u003csup\u003e\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u003c/sup\u003e. However, the growing number of people living with serious illnesses, especially non-cancer long-term conditions, has increased the demand for palliative care, which points to the further expansion and improvement of these services. As a result, the demand for palliative care far exceeds the capacity of existing services, and most patients with advanced disease face unmet needs \u003csup\u003e\u003cspan additionalcitationids=\"CR9\" citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u003c/sup\u003e. Indeed, in Rwanda, as in many low settings, healthcare systems are structured around vertical, disease-specific programs that focus on individual conditions, while, these models can be effective for targeted disease control, they often fail to address the complex, multidimensional needs of patients requiring palliative care. These models often fall short in addressing the complex and multidimensional needs of patients requiring palliative care. As patients with life-limiting illnesses frequently experience fragmented, uncoordinated care and mixed information, leading to delays in seeing palliative care support \u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e. Timely and accurate diagnosis is a critical step in initiating appropriate palliative care, as it helps patients and families understand the illness and make informed choices. However, in low-resource settings like Rwanda, diagnostic delays are common. When patients experience a significant deterioration in their condition before diagnosis, they miss the opportunity to receive timely and well-coordinated palliative care integrated with other treatments \u003csup\u003e\u003cspan additionalcitationids=\"CR13\" citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u003c/sup\u003e. Past research has found that delays in diagnosis, combined with limited information about disease progression, often lead to persistent uncertainty and unclear prognoses in progressive illnesses. This uncertainty increases psychological distress and undermines patients\u0026rsquo; ability to plan and cope effectively. Providing patients with clear information is crucial in helping them adapt and maintain a sense of control throughout their illness \u003csup\u003e\u003cspan additionalcitationids=\"CR16\" citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u003c/sup\u003e. Communication is broadly acknowledged as essential throughout the illness trajectory and the transition to palliative care, as patients face numerous physical, emotional, and existential changes that require ongoing adjustment \u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e,\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u003c/sup\u003e. A wide range of research and clinical recommendations highlight that transparent, compassionate conversations enable patients and their families to understand the prognosis and care objectives, promote shared decision-making and informed choices, and help ease anxiety, uncertainty, and emotional strain. Such communication also ensures that care aligns with the patient's personal values and preferences \u003csup\u003e\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e,\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e. In addition, communication that is cultural plays a crucial role in improving palliative care for individuals with chronic, progressive illnesses. By respecting and incorporating patients\u0026rsquo; values and belief systems, it helps ensure care is more personalized and meaningful. This approach also strengthens trust, encourages honest conversations, and supports joint decision-making, ultimately leading to more compassionate and patient-centred care \u003csup\u003e\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e,\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u003c/sup\u003e. Additionally, understanding medical information and the ability to navigate the healthcare system are crucial for patients. By building trust and fostering clear communication, healthcare providers promote active patient involvement in decision-making, ensuring that care aligns with patients\u0026rsquo; preferences. Ultimately, this leads to more person-centred, respectful, and effective care throughout the illness journey \u003csup\u003e\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e,\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u003c/sup\u003e. This study seeks to gain a deep understanding of the lived experiences of patients in Rwanda living with chronic illnesses and receiving palliative care, focusing on how they perceive and navigate their illness journey amid serious health conditions. Research on patients\u0026rsquo; experiences with palliative care in Rwanda remains limited, as existing studies have predominantly focused on palliative care needs and healthcare providers rather than patients\u0026rsquo; personal perspectives. Much of the published literature on palliative care also originates from high-resource settings, which may not fully reflect the challenges and realities faced in Rwanda\u0026rsquo;s low-resource context.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003cb\u003eDesign\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThis study employed a qualitative approach using a phenomenological design to gain an in-depth understanding of the experiences of patients living with incurable illnesses and receiving palliative care. Phenomenology emphasizes exploring experiences from the patient\u0026rsquo;s unique perspective, capturing the meanings they assign to their illness journeys and significant life transitions such as the shift to palliative care \u003csup\u003e\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003e\u003cb\u003eSetting\u003c/b\u003e\u003c/p\u003e\u003cp\u003e The study was conducted at a teaching hospital in Rwanda known for its leadership in integrating palliative care into routine healthcare services. Palliative care has been incorporated across all hospital departments and extended to home-based care through collaboration with community health workers. Despite its recognized role in advancing palliative care, the hospital does not have a dedicated palliative care unit. Instead, patients in need of palliative care are typically managed within general wards, alongside those receiving treatment for other medical conditions.\u003c/p\u003e\u003cp\u003e\u003cb\u003eParticipants and sample size\u003c/b\u003e\u003c/p\u003e\u003cp\u003e The study was carried out at a teaching hospital in Rwanda recognized for its pioneering efforts in incorporating palliative care into standard medical practice. Palliative care services are available across all hospital departments and have been expanded into the community through home-based care supported by community health workers.\u003c/p\u003e\u003cp\u003eA purposive sampling strategy was employed to recruit a diverse group of participants, ensuring variation in age, gender, and the types of complex health conditions represented. Eligible participants were adults aged 18 years and older, diagnosed with advanced chronic illnesses such as cancer, chronic obstructive pulmonary disease (COPD), HIV/AIDS, and other progressive, life-limiting conditions. All participants were actively receiving palliative care services at the time of data collection. Inclusion criteria required that individuals be cognitively competent and capable of providing informed consent, thereby upholding ethical standards and ensuring the credibility of the data collected. Exclusion criteria included individuals with chronic illnesses who were receiving exclusively curative (non-palliative) treatments; those with cognitive impairments or altered mental status that impeded their ability to provide informed consent or participate meaningfully in interviews; and non-patients such as family members.\u003c/p\u003e\u003cp\u003eA total of twelve participants were included in the study, with the sample size determined by the principle of data saturation. Data collection continued until no new themes or insights emerged, ensuring depth and comprehensiveness in the findings. Saturation was reached by the tenth interview, after which two additional interviews were conducted to confirm that no further novel information was being generated. These final interviews validated that data saturation had been achieved, as no new concepts or patterns were identified \u003csup\u003e\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eInterview guide\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe interview guide was created by two researchers (NE and KC) following an extensive review of palliative care literature, with a focus on the lived experiences of patients receiving palliative care for serious illnesses in low-resource settings. To ensure relevance, coherence, and alignment with the study objectives, a multidisciplinary team of palliative care clinicians and researchers reviewed the guide. Their feedback helped refine the content, improve clarity, and maintain focus on core research questions. The guide was translated into Kinyarwanda and back-translated into English to verify linguistic accuracy and conceptual equivalence. A pilot test assessed the guide\u0026rsquo;s clarity, cultural appropriateness, and usability. Insights from this process informed final adjustments, resulting in a contextually suitable tool for eliciting rich, meaningful data.\u003c/p\u003e\u003cp\u003eThe primary questions centred on patients\u0026rsquo; experiences living with chronic illness while receiving palliative care, covering their journey from diagnosis through disease progression.\u003c/p\u003e\u003cp\u003eKey questions included: Can you describe your experience of living with your illness, from diagnosis to present?\u003c/p\u003e\u003cp\u003eWhat aspects of your life have changed most since your diagnosis?\u003c/p\u003e\u003cp\u003eHow has communication with healthcare providers affected your involvement in care decisions?\u003c/p\u003e\u003cp\u003eHow have family members contributed to and influenced your illness management?\u003c/p\u003e\u003cp\u003e\u003cb\u003eData collection\u003c/b\u003e\u003c/p\u003e\u003cp\u003e The interviews were guided by a semi-structured protocol composed of open-ended questions designed to encourage detailed, reflective responses. Conducted by the principal investigator (NE), a PhD candidate with expertise in qualitative research and a background in nursing education and critical care, each interview lasted between 40 and 60 minutes. The discussions focused on participants\u0026rsquo; experiences of communication and involvement in care-related decision-making throughout the course of their illness. To ensure consistency across interviews, each session began with a core set of standardized questions, allowing all participants to reflect on key themes. Follow-up probing questions were used flexibly to deepen the discussion and elicit richer, more contextually grounded insights. All interviews were conducted by NE, who had no prior relationship with the participants, were audio-recorded, and transcribed verbatim. At the start of each interview, NE introduced herself and explained the study\u0026rsquo;s purpose. To maintain confidentiality, transcripts were anonymized, and pseudonyms were assigned to participants and used in all study documents. Participants were informed that they could withdraw from the interview at any time without giving a reason. Alongside the recordings, the principal investigator took field notes during interviews to capture contextual details and initial impressions that enriched data interpretation. Additional notes were made during data analysis, especially while reviewing transcripts, to deepen understanding and support theme development. Data collection continued until saturation was reached, that is, when no new themes or information emerged.\u003c/p\u003e\u003cdiv id=\"Sec2\" class=\"Section2\"\u003e\u003ch2\u003eData Analysis\u003c/h2\u003e\u003cp\u003eThe data were analyzed using Interpretative Phenomenological Analysis (IPA), a qualitative methodology that focuses on exploring how individuals make sense of their lived experiences. This approach allowed for an in-depth examination of participants\u0026rsquo; personal interpretations and the meanings they attributed to their illness journeys [20]. Once transcribed, the interviews were analyzed. The Smith and Osborn\u0026rsquo;s approach guided the data analysis through a systematic, multi-step process [21]. The data analysis followed a systematic, multi-step approach. Initially, all interviews were transcribed verbatim and reviewed multiple times to ensure thorough familiarity with the content, allowing for the identification of preliminary themes. These initial themes were then refined and organized into broader conceptual categories. The next step involved examining relationships among themes to uncover overarching patterns across the data. Each participant\u0026rsquo;s account was subsequently analyzed in depth to preserve the uniqueness of individual experiences. A cross-case analysis was then conducted to identify commonalities and differences across narratives. Finally, a coherent thematic narrative was constructed, rooted in participants\u0026rsquo; lived experiences and integrating both individual perspectives and shared meanings. Data were systematically organized, coded, and categorized using ATLAS.ti 7.1 software.\u003c/p\u003e\u003cp\u003e The study used Interpretative Phenomenological Analysis (IPA) to center participants\u0026rsquo; perspectives, with initial transcript review by the principal investigator. Line-by-line coding was independently performed by two researchers (NE and MF) and refined collaboratively with the broader team through consensus. Credibility was strengthened through peer debriefings, operational definitions, thematic mapping, and use of verbatim quotes. Transcripts were revisited for accuracy, a qualitative memo was maintained for analytical rigour, and all data were securely stored.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eEthics approval\u003c/strong\u003e\u003cp\u003e This study was conducted in accordance with the ethical standards outlined in the Declaration of Helsinki, the internationally recognized code of ethics developed by the World Medical Association. Ethical approval was obtained from the Institutional Review Board of the University of Rwanda (No. 047/CMHS IRB/2022), the Rwanda National Ethics Committee (No. 107/RNEC/2022), and other relevant regulatory bodies. Participants were assured of confidentiality, with identifying information pseudonymized, and were informed of their right to withdraw from the study at any time without any impact on their care. Both oral and written informed consent were obtained to ensure that participants\u0026rsquo; rights were fully respected throughout the study.\u003c/p\u003e\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cb\u003eCharacteristics of the Participants\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe study sample comprised twelve participants, evenly distributed by gender (six women and six men), with ages ranging from 31 to 72 years (mean age\u0026thinsp;=\u0026thinsp;51.2 years). Marital status varied among the participants, including four individuals who were married, one widowed, three single, and four divorced. The majority of participants were living with multiple comorbidities in addition to their primary diagnosis, reflecting the complex and multifaceted nature of their health challenges. (Table \u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eCharacteristics of the Participants\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"5\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Taba\" border=\"1\"\u003e\u003ccolgroup cols=\"1\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eParticipant ID\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eAge Range\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eGender\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarital Status\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c5\"\u003e\u003cp\u003eDiagnosis\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePTO1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e40\u0026ndash;49\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eDivorced\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eHIV, Post-TB Complications, Lung fibrosis\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePTO2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e40\u0026ndash;49\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003ePost-TB Complications, Lung fibrosis\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePTO3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e30\u0026ndash;39\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eSingle\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eAdvanced Cirrhosis\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePTO4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e40\u0026ndash;49\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eDivorced\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eAdvanced HIV- Lung Fibrosis post- TB\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePTO5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e40\u0026ndash;49\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eDivorced\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eHIV and Opportunistic Infections\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePTO6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e50\u0026ndash;60\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eAdvanced kidney disease\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePTO7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e30\u0026ndash;39\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eAdvanced Cancer of the knee\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePTO8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e70\u0026ndash;79\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003emarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eAdvanced prostate cancer and diabetes\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePTO9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e50\u0026ndash;59\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003ewidowed\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eAdvance HIV, lungs fibrosis\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePTO10\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e30\u0026ndash;39\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eSingle\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eMyasthenia gravis\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePTO11\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e40\u0026ndash;49\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eDivorced\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eAdvanced cancer and HIV\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePTO12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e40\u0026ndash;49\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eSingle\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eHepatic-Pulmonary Failure, Lung Fibrosis\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eThematic results\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe analysis identified four key themes from the study data: (1) Changes driven by the disease, (2) Experiencing uncertainty, (3) Communication and access to information, and (4) Need for support (see Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eThemes and Subthemes\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"2\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCategories\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSubcategories\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e1.\u003c/b\u003eChanges driven by disease:\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003e1\u003c/b\u003e: Patients experienced changes in normal life.\u003c/p\u003e\u003cp\u003e2. Diagnosis process\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2. Experiencing uncertainty\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1. Unpredictability of Disease Progression\u003c/p\u003e\u003cp\u003e2 Accepting the Reality of the Situation\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e3.Communication and information\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1: Access to Accurate and Comprehensive Information:\u003c/p\u003e\u003cp\u003e2: Limited interaction and discussion with healthcare providers\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNeed for support\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1.Being supported by family\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 1: Changes driven by disease.\u003c/b\u003e\u003c/p\u003e\u003cp\u003eFrom the participants\u0026rsquo; perspective, living with a serious, chronic, progressive illness evokes a wide range of emotions and responses that depend on how they personally experience and interpret their condition. Many reported that frequent medical visits during the diagnostic process disturbed their daily routines, with many feeling that the illness was taking over and controlling everything.\u003c/p\u003e\u003cp\u003e\u003cb\u003ePatients experienced changes in normal life.\u003c/b\u003e\u003c/p\u003e\u003cp\u003eMost of the participants reported significant changes to their everyday lives as a result of their illness, highlighting disruptions to their daily routines as noticed:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003eThis disease\u0026hellip; (cancer) brings changes to every aspect of life. I don\u0026rsquo;t feel like the person I used to be. Before, I would wake up early, go to my little job, and take care of my family without any problems. There were things I used to do automatically, without even thinking now I realize how important they were\u003c/em\u003e. \u003cem\u003e\u0026hellip;. (P11).\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eI used to take care of my old mother, but now I can\u0026rsquo;t. I don\u0026rsquo;t have the strength anymore, and it makes me really sad because she depends on me. I also had to stop my small business. Now, it\u0026rsquo;s like we\u0026rsquo;ve lost all control. We can\u0026rsquo;t do anything \u0026hellip;\u003c/em\u003e (P9).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eDiagnosis process\u003c/b\u003e\u003c/p\u003e\u003cp\u003eMany participants reported delays in receiving an accurate diagnosis, often having to visit multiple health facilities during this challenging journey. As a result, some turned to alternative options, such as traditional healers, in search of answers and support.\u003c/p\u003e\u003cp\u003e\u003cem\u003eIt wasn\u0026rsquo;t easy... I kept moving from one hospital to another. Waiting in long lines while doing many tests that felt never-ending\u003c/em\u003e... \u003cem\u003ewaiting for results takes days or weeks; I wondered what story the results would reveal\u0026hellip;(P2).\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026hellip;When they said it might be cancer, I thought I had been bewitched (barandoze) because I couldn\u0026rsquo;t understand how this situation could happen to me. As things became complicated for me, we looked for other solutions. We went to a traditional healer who gave us herbs for my leg and for the wound. But I continued to have more pain, and my wound was not healing\u0026hellip;Nothing changed, and I kept suffering\u003c/em\u003e.\" (P \u003cem\u003e7)\u003c/em\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;In the beginning, I believed this illness was something only God could handle. I knew some priests in my village, so we went, and he prayed for me.\u0026rdquo; (P3)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 2: Experiencing uncertainty\u003c/b\u003e\u003c/p\u003e\u003cp\u003eMany participants experienced deep uncertainty about their illness as it progressed, largely due to a poor understanding of their condition. The lack of clear explanations from healthcare providers left them confused, anxious, and unprepared for what lay ahead.\u003c/p\u003e\u003cp\u003e\u003cb\u003eUnpredictability of Disease Progression\u003c/b\u003e\u003c/p\u003e\u003cp\u003eMany participants had a limited understanding of their condition and were uncertain about how the disease might progress over time as participants shared;\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026hellip; I didn\u0026rsquo;t really understand what was happening to me or how bad it was. I lost so much weight that people thought I had AIDS. I think some doctors thought the same, but they didn\u0026rsquo;t tell me. I\u0026rsquo;ve been on TB medicine for two years, but I still feel unwell and have trouble breathing. I keep asking myself what\u0026rsquo;s really wrong and what will happen to me\u003c/em\u003e \u0026hellip;(P9)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026hellip;. I never imagined things would reach this point. When I found out I would need to rely on this machine (oxygen) to survive, it felt like I might never return home. Even now, I still don\u0026rsquo;t know what\u0026rsquo;s going to happen, I don\u0026rsquo;t see how I could ever have this machine at home. (p4)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eAccepting the Reality of the Situation\u003c/b\u003e\u003c/p\u003e\u003cp\u003eAs their illness progressed, participants realized their situation was beyond control, enabling them to accept reality as it is and find peace despite ongoing challenges.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026hellip; At first, I was very angry and kept asking why this was happening to me. The doctors told me I have a lung problem that can\u0026rsquo;t be cured, which makes it hard to breathe. Slowly, I realized some things are just out of my control. For my family, I had to accept it and learn to live with it (P2).\u003c/em\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026hellip;. They told me my condition couldn\u0026rsquo;t be healed, and even though it was hard to understand, I trusted that the doctor knew what was best. So, I accepted it and started focusing on living one day at a time (P1).\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 3. Communication and Information\u003c/b\u003e\u003c/p\u003e\u003cp\u003eEffective communication and access to accurate information were major challenges for participants throughout their illness journey from the time of diagnosis to the point when they had to adjust to a new way of living. These barriers significantly delayed their involvement in decision-making.\u003c/p\u003e\u003cp\u003e\u003cb\u003eAccess to Accurate and Comprehensive Information\u003c/b\u003e:\u003c/p\u003e\u003cp\u003eParticipants consistently reported difficulties in getting clear, complete, and understandable information about their illness, which limited their ability to take an active role in healthcare decisions, as participants expressed:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003eWhen the results came out, the doctor pointed to an area in the picture and said it might be something serious that the part that, was swollen didn\u0026rsquo;t look normal. I looked at the image, but I didn\u0026rsquo;t really understand what he meant. Later, he said it could be cancer and that they needed to take a sample to be sure. I didn\u0026rsquo;t catch all the details, but deep down, something in me just knew it was cancer (P7).\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026hellip; I went to many hospitals and saw different doctors. In the end, they gave me a diagnosis. They said it was a rare disease, but I didn\u0026rsquo;t really know what that meant. I asked the nurses to explain, but no one made it clear to me. So I began searching for answers on my own. That\u0026rsquo;s when I found out I had a muscle disease, the kind that makes your body weak and tired all the time. Now, I can\u0026rsquo;t work anymore.\u0026rdquo; (P 10).\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eLimited interaction and discussion with healthcare providers\u003c/b\u003e\u003c/p\u003e\u003cp\u003e Participants experienced minimal engagement with healthcare providers in an environment that felt unconducive to open communication. Conversation was often brief, providing little opportunity to participate in meaningful dialogue, which hindered their understanding and involvement in decision- making.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026hellip; I understand that doctors are very busy and have many patients to see, so their visits are often short\u0026hellip; I wish they could spend a little more time with me so I can ask questions about my condition and make informed decisions about how to live with my illness (P5).\u003c/em\u003e\u003c/p\u003e\u003cp\u003eAnother mentioned: \u0026hellip;\u0026hellip;\u003cem\u003eAs you can see, we are many in one room, and expressing their concerns openly with the doctor it is challenging. In our family, we like to keep personal matters private. We don\u0026rsquo;t speak out loud about our problem; we keep them inside and try to appear strong. But the doctor always comes with the whole team, so we don\u0026rsquo;t feel free to openly talk about our problems (P1).\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 4: Need for support\u003c/b\u003e.\u003c/p\u003e\u003cp\u003eParticipants highlighted the importance of family support. Some relied on loved ones for care and comfort, while others faced their illness alone.\u003c/p\u003e\u003cp\u003e\u003cb\u003eBeing supported by family\u003c/b\u003e\u003c/p\u003e\u003cp\u003e Participants emphasized the supportive role of the family in helping them manage their illness, providing reassurance, and improving their overall well-being. As participants mentioned:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003eMy family has been with me since the beginning; through all the pain and suffering, we\u0026rsquo;ve faced this illness together. They do everything for me. They pray for me, buy my medication, and give me the strength to keep going. Their support means everything. But sometimes I wonder\u0026hellip; until when? I feel like I\u0026rsquo;ve lost my dignity as a man (P8).\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eDuring the first year of my illness, my family used to visit me often. I felt their presence, and it gave me strength. But now... things have changed. They seem busy\u0026hellip; maybe tired of it all. Even my husband doesn\u0026rsquo;t come anymore\u003c/em\u003e (P4).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003e This study explored the experiences of patients with incurable illnesses receiving palliative care in one hospital in Rwanda. Given the reality of a low-income setting and cultural differences in this country, together with the lack of previous research on this topic here, this study offered insights into the experiences of these participants. All were assigned to a palliative care service, but not all were aware of this status.\u003c/p\u003e\u003cp\u003eOur study reveals that the illness was perceived by patients as a fundamental change in their way of living. For many participants, the onset of the illness marked a significant shift from their usual routines and their usual way of approaching life. Many experienced alterations in their daily activities, which in turn affected their level of independence and increased their dependency on others. Our findings align with previous research indicating that individuals living with chronic illness often experience a negative shift in their perception of life. These outcomes are characterized by difficulties in managing employment, frequent medical appointments, and a sense that the illness dictates their daily lives and overall autonomy \u003csup\u003e\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e\u003c/sup\u003e. This study additionally revealed that the diagnostic process was often prolonged, causing significant delays in reaching an accurate diagnosis. These delays not only made it difficult for participants to access clear information about their illness early on and receive timely palliative care but also pushed many to seek help from traditional healers in search of support and comfort. In many low-income countries, delayed diagnosis is a common issue due to limited healthcare infrastructure, lack of diagnostic tools, and shortages of trained professionals. In African settings, cultural beliefs and traditions strongly influence care-seeking behaviors. Once biomedical explanations are delayed or difficult to understand, patients often turn to traditional healers and spiritual leaders, who are seen as trusted sources of support and guidance. This movement between traditional and formal healthcare systems can shape patients\u0026rsquo; understanding of their illness and impact how they interact and collaborate with healthcare provider \u003csup\u003e\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e,\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e\u003c/sup\u003e. In addition, participants\u0026rsquo; uncertainty was strongly linked to their limited understanding of the illness and how it would progress. Because their condition was not clearly explained, many felt confused, anxious, and unprepared for what lay ahead. As found in previous studies, uncertainty often stems from unpredictable symptoms, unclear prognoses, and the absence of curative treatment options. When this uncertainty is not addressed, it can lead to emotional distress, including anxiety, depression, and a reduced quality of life. These findings highlight the need for timely, honest, and compassionate communication in palliative care. Such communication helps patients understand their condition and cope emotionally. It builds trust, reduces uncertainty, and encourages shared decision-making. Without it, patients may feel isolated, confused, and less involved in their care \u003csup\u003e\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e,\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e,\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e,\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003eThe results reveal that a lack of effective communication and accessible information significantly hindered patients\u0026rsquo; understanding of their condition and their ability to make informed treatment decisions. patient involvement in decision-making was limited. Participants described having only limited conversations with healthcare providers and not enough time for meaningful discussions. In addition, many felt that doctors made all the decisions, simply because they were viewed as the experts. Existing literature supports the finding that effective communication is essential in managing chronic illness within palliative care. When healthcare providers offer clear, consistent, and compassionate explanations about diagnoses, treatment options, and disease progression, patients are more empowered to make informed choices and actively participate in their care\u003csup\u003e\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e\u003c/sup\u003e,\u003csup\u003e\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e\u003c/sup\u003e. However, as demonstrated in this study, when effective communication is lacking, patients often struggle to understand their condition, feel excluded from decision-making, and tend to adopt a passive role, placed full trust in the physician\u0026rsquo;s decisions.\u003c/p\u003e\u003cp\u003eThrough the philosophy of palliative care, family involvement is seen as essential, especially since hospital stay remove patients from their familiar and supportive social environment \u003csup\u003e\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e,\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e\u003c/sup\u003e In Rwanda, the saying \"When you are well, you belong to yourself, but when you are sick, you belong to your family\u0026rsquo; illustrates the deep cultural role families play in caregiving\u003csup\u003e\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e\u003c/sup\u003e. Families provide emotional support, a sense of identity, and hope, often becoming central in care and decision-making. Participants recognized this support as vital to maintaining their dignity and emotional well-being.\u003c/p\u003e\u003cp\u003e\u003cb\u003eLimitations of the study\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThis study provides valuable insights into the experiences of patients with chronic illnesses receiving palliative care. However, several limitations should be considered. While participants had a range of conditions, the study may not fully capture the unique challenges and needs associated with each specific illness. Additionally, conducting the study in an environment where palliative care is still developing may limit the applicability of the findings to settings with more established palliative care systems. Furthermore, the exclusion of family members from the study limits the understanding of the full palliative care experience, as family dynamics and support play a critical role in the care and emotional well-being of patients during this phase.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study offers significant insights into the lived experiences of patients with chronic illnesses undergoing palliative care in Rwanda. The findings reveal that a diagnosis of chronic illness leads to significant changes in patients\u0026rsquo; lives, often accompanied by uncertainty and the need to accept the reality of their situation. Clear communication and strong support, including family involvement and spiritual resources, are crucial in helping patients navigate these challenges and maintain their well-being.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgments\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors extend their sincere gratitude to the palliative care team at the hospital for their invaluable support in facilitating access to participants for this study.\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003cstrong\u003eAuthor contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll authors meet the criteria for authorship. E.N., M.M., C.K., and F.M. each made significant contributions to the research, including the conception and design, data acquisition, and analysis and interpretation. E.N. and F.M. led the drafting of the main manuscript, while C.K. and M.M. critically revised the text and tables. All authors reviewed and approved the final version of the manuscript for publication.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study received no external funding.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors have no competing interests\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAdditional information\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eRequests for materials and correspondence should be directed to E.N\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eData supporting the findings of this study are not publicly available due to ethical concerns related to participant privacy and confidentiality. However, they may be made available by the corresponding author upon reasonable request, subject to approval by the relevant ethical review board.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eLaursen, L., Sch\u0026oslash;nau, M. N., Bergenholtz, H. M., Siemsen, M. \u0026amp; Christensen, M. Table in the corner: a qualitative study of life situation and perspectives of the everyday lives of oesophageal cancer patients in palliative care. 1\u0026ndash;10 (2019).\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eAhmed, S. Patient and Caregiver Experiences Living with Advanced Colorectal Cancer \u0026amp; Receiving Early Palliative Care in Alberta. (2020).\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eClelland, D. et al. 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Care\u003c/em\u003e. \u003cb\u003e19\u003c/b\u003e, 1\u0026ndash;16 (2020).\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eJo\u0026atilde;o, M., Teixeira, C., Abreu, W., Costa, N. \u0026amp; Maddocks, M. Understanding family caregivers \u0026rsquo; needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal. 1\u0026ndash;11 (2020).\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eNtizimira, C., Deo, M. S., Dunne, M. \u0026amp; Krakauer, E. Decolonizing end-of-life care: lessons and opportunities. \u003cem\u003eecancermedicalscience\u003c/em\u003e 16, (2022).\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"scientific-reports","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"scirep","sideBox":"Learn more about [Scientific Reports](http://www.nature.com/srep/)","snPcode":"","submissionUrl":"","title":"Scientific Reports","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Scientific Reports","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Lived experiences, Palliative care, Transition to care, Incurable illness, End-of-life care, chronic illness, Rwanda","lastPublishedDoi":"10.21203/rs.3.rs-7196430/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7196430/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eAs more people live with chronic and life-limiting illnesses, the need for accessible and holistic palliative care is growing. Palliative care supports quality of life by addressing physical, emotional, social, and spiritual needs. Good communication, clear information, and emotional support help patients cope and make informed choices. The aim of this study is to explore the lived experiences of people receiving palliative care, focusing on how they understand and live with their illness\u003c/p\u003e\u003cp\u003eA phenomenological design was used. Semi-structured interviews were conducted with chronically ill patients selected through purposive sampling. Data were analyzed thematically.\u003c/p\u003e\u003cp\u003eFindings highlight four major themes: (1) Changes driven by disease (2) Experiencing uncertainty (3) Communication and information, and (4) support needs. In conclusion, advanced chronic illness within palliative care significantly alters patients\u0026rsquo; perceptions of life, disrupts daily routines, and redefines social roles. Their journeys are often shaped by emotional distress, uncertainty, and a profound search for meaning. Ensuring clear communication and providing reliable information are essential to support patients\u0026rsquo; understanding, informed decision-making, and emotional well-being.\u003c/p\u003e","manuscriptTitle":"The Illness Experience: A qualitative study to explore the patients' lived experiences in a palliative care setting in Rwanda","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-08-14 11:00:24","doi":"10.21203/rs.3.rs-7196430/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-02-25T15:48:29+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-10T23:11:47+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"184043171016144160323219419131319934814","date":"2025-10-05T02:33:32+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-03T11:28:16+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"47132314351608720302494709707162044594","date":"2025-10-01T21:56:27+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"177495702853594074747952341692012542945","date":"2025-09-30T20:54:42+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-08-08T00:45:27+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-08-08T00:43:55+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-07-29T10:54:27+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-07-28T12:56:17+00:00","index":"","fulltext":""},{"type":"submitted","content":"Scientific Reports","date":"2025-07-28T12:53:07+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"scientific-reports","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"scirep","sideBox":"Learn more about [Scientific Reports](http://www.nature.com/srep/)","snPcode":"","submissionUrl":"","title":"Scientific Reports","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Scientific Reports","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"7d2881b4-ad4f-4316-82d9-55ab7b56936e","owner":[],"postedDate":"August 14th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[{"id":52988821,"name":"Health sciences/Health care"},{"id":52988822,"name":"Humanities/Health humanities"},{"id":52988823,"name":"Humanities/Medical humanities"}],"tags":[],"updatedAt":"2026-05-21T20:08:15+00:00","versionOfRecord":[],"versionCreatedAt":"2025-08-14 11:00:24","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7196430","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7196430","identity":"rs-7196430","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}