Challenges and suffering of people with advanced illness in rural Nepal: A mixed method multiple case study in four municipalities

Challenges and suffering of people with advanced illness in rural Nepal: A mixed method multiple case study in four municipalities | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Challenges and suffering of people with advanced illness in rural Nepal: A mixed method multiple case study in four municipalities Arati Poudel, Daniel Munday, Sunita Bhandari, Adipti Pantha, Amrita Thapa, and 7 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8610619/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 14 Mar, 2026 Read the published version in BMC Palliative Care → Version 1 posted 14 You are reading this latest preprint version Abstract Background Nepal is experiencing increasing need for palliative care through the rising prevalence of non-communicable disease and an aging population. Most people live in rural areas where access to healthcare is limited. This study explores experiences of suffering and health seeking behaviour amongst people with palliative care needs (PWPCN) and their unpaid family caregivers in rural Nepal. Methods A constructivist multiple case study design was employed across four rural municipalities (cases) in two districts. Cases included communities of varied ethnicity and human development indices served by a community hospital and village health posts. A house-to-house survey using the Supportive and Palliative Care Indicators Tool for Low Income Settings (SPICT-LIS) identified PWPCN. Following completion of a structured questionnaire, a purposive sample of PWPCN was constructed (unit of analysis). They, their carers and key informants completed semi structured interviews. Quantitative data were analysed using descriptive statistics and qualitative data were analysed thematically both within and across case. Results Among 587 households surveyed, 58 PWPCN were identified. 20 units of analysis were formed with interviews from 17 PWPCN and 17 caregivers and 16 key informants. None of the PWPCN had access to palliative care services. Three themes emerged: (1) Everyone suffers: reflecting high levels of physical, emotional, spiritual and social pain. (2) Paying for healthcare: high out-of-pocket expenditure, debt, and financial vulnerability mitigated partially for some by health insurance. (3) Decision-making - no right answer: exposed difficulties choosing between limited local services and distant, costly tertiary care. Decisions were affected by distance to and location of health facility (particularly those offering health insurance), transportation, cost/family resources, and a strong belief that “better care is found in the city.” Bypassing nearby facilities for distant tertiary hospitals was common. High level of suffering and unmet need led to a feeling of lack of control. Older people particularly did not access health care because of cost and were resigned to their fate. Conclusion PWPCN in rural Nepal endure substantial suffering through unmet holistic needs and limited access to appropriate care. Financial hardship, geographical barriers, and perceived low-quality local services drive people toward distant facilities thus increasing costs. Palliative care Primary palliative care Health-seeking behaviour Rural health Nepal Multiple case study Figures Figure 1 BACKGROUND Along with other low and lower-middle income countries, Nepal is experiencing a demographic change as more people live with and die from chronic illness. Life expectancy at birth increased from 58 years to 71 years between 1990 and 2017 [ 1 ] and deaths from non-communicable diseases (NCD) more than doubled (30% to 70%) in the same period [ 2 ]. Health service development has not kept pace with the rapid increase in chronic illness, particularly for those in rural areas [ 3 , 4 ]. Palliative care has been established in the country for 25 years but services reach only a small proportion of people, typically those living with cancer in larger cities [ 5 ]. The need for development of appropriate palliative care close to where people live and for other illnesses was acknowledged by the government in 2017 with a National Strategy for Palliative Care [ 6 ]. This strategy proposed that primary palliative care should be established in government provided district hospitals and surrounding village health posts, incorporating the expertise of female community health volunteers (FCVH) [ 7 ] . In 2021 the health system in Nepal underwent a major reorganization. The new health system is organized across three levels - federal, provincial and local. At local level, rural communities are served by health posts and community hospitals managed either by the government or by non-governmental organizations (NGOs) within municipalities, which are political divisions within districts in Nepal. The national strategy for palliative care has been updated accordingly and approved by the Government of Nepal in 2025 [ 8 ]. The Sunita Project, a three-year UK Aid Match Funded programme delivered by EMMS International and INF Nepal, sought to implement rural aspects of the national strategy between 2022 and 2025. Research for the project aimed to explore and understand the experiences of rural Nepalese living with palliative care needs, their health seeking behaviours and the experiences of those who care for them. An earlier article presented the quantitative findings from a house to house survey which formed part of this research [ 9 ]. Here we present the results of a mixed method multiple case study building on results presented in that earlier article. METHODS A multiple case study design was employed for this research. This approach was chosen because it facilitates in-depth exploration of a phenomenon as experienced by or in different units or cases [ 10 ]. This was framed within a constructivist paradigm which allows an appreciation for the various world views held by the participants and international research team, allowing space for the presence and construction of multiple realities of experience and understanding [ 11 ] . Study setting The study was undertaken in two rural districts in west Nepal, Lamjung and West Rukum. Study population The study incorporated four cases, with a case defined as a single municipality within which two communities were sampled. The communities were identified with the assistance of the municipality government’s health officials. Each case was characterized by their rurality and remoteness from large conurbations. In addition to small rural health posts, each case was served by a rural community hospital. Ethics The study was approved by Ethical Review M&E Section of Nepal Health Research Council (Number 515/2022). Approval for the study was given by each municipality mayor and no requests for approval were rejected. Informed consent was obtained from all participants. For the under 18s interviewed, guardian consent was also obtained. Recruitment Screening house to house surveys were carried out in all the homes in the two communities of each case. Where the screening suggested the potential presence of a person with palliative care needs (PWPCN) i.e. living with chronic illness, disability or old and frail, the Supportive and Palliative Care Indicators Tool – Low Income Settings (SPICT-LIS) was completed. An individual would be eligible for recruitment if scoring positive for palliative care needs on the SPICT-LIS general indicators. Potential participants were the PWPCN or their primary carer if they were unable to participate. They were provided with study information verbally and written if they were literate. After having time to consider the request, those wishing to participate gave their informed consent and then completed a survey questionnaire covering demographics, diagnosis, health seeking behaviour, and an assessment of palliative care needs using the Nepali Palliative care Outcome Scale (NPOS)[ 12 ]. Further details of the questionnaire and results from it were published in the earlier article [ 9 ] These data were then used to purposively identify a theoretical (sub)-sample of “units of analyses” defined as PWPCN and any carer drawn from those identified within each case. Additional data was sought from key informants within each case (e.g. teachers, social workers, primary health care providers) to enable deeper understanding of the context of each case. Data collection Survey data were recorded onto tablets using KOBO Toolbox[ 13 ]. Semi-structured interviews were conducted by public health trained Nepali fieldworkers in the local language in respondents’ homes at times convenient to them. Interview topic guides are available in Supplementary File − 1. Interview data were audio-recorded and transcribed verbatim, then translated into English before analysis. Ten percent of transcripts were translated by two researchers as a quality assurance measure. Field notes and reflective journals were kept by the research team. Anonymised English translations were exported into Atlas.ti software programme for analysis [ 14 ] . Data analysis The analysis and synthesis of the quantitative and qualitative data in this multi-case study research alternated between the uniqueness and particularity of the individual cases with that of the phenomenon as experienced across the cases [ 10 ]. Propositions (Box 1) served as a framework for the case study by maintaining its boundaries and feasibility. [ 15 ] The propositions were developed by members of the research team (AP, SB, AdP, PT, DM), drawing on the palliative care research literature from Low- and Middle-Income country (LMIC) contexts, and on the authors’ (DF, MJB, LG) experience of palliative care research, advocacy and clinical practice in Asia, Latin America, and Africa. It is challenging for people to access healthcare in Nepal because of the terrain and poverty Health beliefs impact and influence healthcare seeking behaviour The interaction between individuals, local and cultural health beliefs with terrain and poverty influencing health seeking behaviour (1 & 2 combined) Box 1: Propositions Data were first analyzed on a within-case basis. Data from the survey, SPICT-LIS and NPOS were analyzed using Microsoft Excel and plotted in graph and chart format. Individual journeys and experiences of each PWPCN were summarized in descriptive narratives. These narratives were enriched with the NPOS data, selected quotations and excerpts from the field notes and reflective journals. This was consistent with Stake’s suggestions to initially use narratives and ‘thick descriptions’ to interpret and present findings [ 16 ] . The English translations of the interview transcripts were thematically analysed using Atlas.ti by the researchers (AP, DF and DM). This included familiarisation through reading and re-reading of the transcripts, line-by-line coding, and organisation of codes into categories [ 17 ]. The analytical process then shifted from an inductive (within-case) to a deductive thematic analysis (cross-case), in which categories and provisional themes were iteratively refined and matured in response to the emerging data and reflective practices over the course of the research [ 18 ]. Throughout this process, the researchers (AP, DF and DM) worked collaboratively and regularly revisited the NPOS data, survey data, interview transcripts, narratives, coding and provisional themes to seek deeper understanding of the developing interpretations and patterns in the data. At the conclusion of the study, the authors team formulated six ‘multi-case assertions’ based on the propositions which are presented after the results. RESULTS Between March 2023 and September 2023, 587 households were surveyed across the four cases. The number of households per case ranged from 140 to 161 (table 1). From these, 58 people were identified as PWPCN (5 to 21 per case). Twenty of the 58 were purposively selected as units of analysis. In total, 52 people were approached and invited to participate. 17 interviews were with PWPCN (three of the 20 were not able to undertake an interview), 15 with their adult carers, 2 with young carers (less that 18 years of age), and 16 with key informants such as municipal health coordinators, doctors, primary health workers, female community health volunteers (FCHV), and social workers or community leaders (figure 1). Figure 1: Visual overview of the formation of units of analysis and multiple cases - Insert here The cases All cases were in hilly rural areas where the commonest occupation is subsistence agriculture. Populations included a number of different ethnic groups who live in hill regions of Nepal. Three cases were located in Lamjung District and one in the West Rukum District of Nepal. Each case’s community hospital varied in size from 15 to 60 beds and provided basic health care including emergency medicine, surgery and obstetric care. In two cases community hospitals offered low-cost care as part of the government health insurance system. Referral hospitals at provincial level were at least three hours from each municipality. No case had formal palliative care services at their hospital or in their community at the time of the data collection (Table 2). Units of Analysis The twenty participants with palliative care needs are presented in Table 3, including brief exerts from the narratives of each. Themes Themes and sub-themes were identified through thematic analysis and are presented in Table 4. Table 1: Quantitative details of cases Variables Total Case 1: Rainas Case 2: Sundarbazar Case 3: Besisahar Case 4: Chaurjahari Households surveyed 587 141 161 145 140 People identified in the House-to-House Survey 2320 546 625 544 605 SPICT-LIS completed 229 61 74 67 27 Number identified with SPICT-LIS as having palliative care needs 58 18 21 14 5 NPOS completed with those with palliative care needs 58 18 21 14 5 Age in years: range (mean) 21-98 (79) 34-87 (74) 21-97 (82) 71-98 (81) 27-76 (68) With a diagnosis of a chronic illness 44 17 a 15 a 7 a 5 Primary diagnosis Cardiovascular 22 11 5 5 2 Chronic Obstructive Pulmonary Disease 9 5 7 1 1 Cancer 6 2 2 1 1 Diabetes 3 1 2 Chronic kidney disease 2 1 Trauma 2 1 1 Undefined diagnosis 12 Purposively Sampled Individual with Palliative Care Need 20 5 6 4 5 Interviews Person living with palliative care needs 17 3 6 4 4 Adult carer 15 4 5 3 3 Young carer 2 1 - - 1 Health workers 16 3 5 5 3 Social worker/ community leaders 2 1 - - 1 Total number of interviews 52 12 16 12 12 a a number of participants had multimorbidity Table 2 – Summary characteristics of cases Case: Municipality (district) 1: Rainas (Lamjung) 2: Besisahar (Lamjung) 3: Sundabazaar (Lamjung) 4: Chaurjahari (West Rukum) Population (2021) 17,402 38,232 27,043 28,956 Community Hospital Sahodar Community Hospital a Lamjung Hospital b Namuna Community Hospital a Chaurjahari Hospital a Health Insurance at hospital No Yes No Yes Time (vehicle) to Community Hospital <1 hour Either* < 1hour or 1.5 – 2 hours Either* < 1 hour or 2 – 3 hours 1.5 – 2 hours Human Development Index 0.507 (Lamjung District) 0.431 (Rukum District) Literacy Rate 76.1% 81.1% 81.4% 65.5% a Non-Governmental Organisation (NGO); b Government; * different area of municipality where data were collected Table 3 – Narratives of units of analysis Person with palliative care needs Brief narrative exerts NPOS Average (Physical) Scale 0 (no suffering) to 4 (unbearable) NPOS Average (spiritual, emotional, psychosocial) Scale 0 (no suffering) to 4 (unbearable) Case 1 C.1.1: Male, 58 years, CVA He struggles with right-sided weakness and recurrent seizures. Despite having a disability card and government insurance, he faces challenges in accessing healthcare due to transportation issues, impacting his seizure treatment and follow-ups. His wife is burdened by caregiving and household responsibilities. He expressed feeling like a burden on wife, sometimes wishing for death to relieve her of the strain. 1.4 0.8 C.1.2: Male, 34 years, Congenital heart disease He has severe physical limitations and is supported mainly by his aging mother. She provides full-time care but is concerned about the physical, emotional, and financial toll on her, and fears who will care for him after her death. Despite health insurance, the family struggles with medical costs and lacks support, making their future uncertain. They had received little financial support from government or their community. 1.5 3.2 C.1.3: Male, 79 years, COPD He faces challenges such as joint pain, back pain, and difficulty walking. He is dependent on his daughter primarily and other family members for financial assistance for medical expenses. He has no health insurance and often struggles with the cost of care. His daughter is emotionally and physically burdened by caregiving and is worried about her own life. 0.7 2.4 C.1.4: Male, 77 years, Cancer He struggles with walking, pain, and incontinence. He lives with his younger son, who takes care of him and covers his medical costs, despite significant financial challenges. He is not enrolled in insurance. He is in need of a new prosthetic leg. His son feels guilty for not being able to afford better care. 1.1 1 C.1.5: Female, 60 years, COPD She struggles with walking, chest pain, and body aches. She is worried about being alone, as her daughters and son are far away. She has spent lots of money on treatment, and is dependent on her son financially who now rarely sends money. Despite having current troubling symptoms, she has decided to wait until she can go for follow up at a higher center in the distant city. This is a private hospital and is not enrolled in insurance. 1.1 2 Case 2 C.2.1: Female, 71 years, Cancer She lives alone and manages her house but struggles with pain and dizziness. She receives support from her family and neighbors, though she sometimes feels tired from her long distance journeys for treatment. 0.4 0 C.2.2: Male, 75 years, Hypertension He has mobility issues, struggles with pain, weakness, and difficulty in accessing specialized care. His 70-year-old wife, despite her own health problems, is the sole caregiver and feels physically and emotionally burdened without family or community support. He manages expenses with their small pension payments. 1.3 2.8 C.2.3: Male, 84 years, Diabetes He needs help with daily tasks. His wife, who is also frail, cares for him despite her own health challenges, and they receive support from their children and neighbors. Finances are managed by their pension. 0.3 0 C.2.4: Male, 71 years, Hypertension & Diabetes He had paralysis and cannot do many things by himself. He struggles with feelings of helplessness and isolation. He is accessing treatment from the local hospital having government health insurance. His old wife takes care of him with little additional help. 1.3 1 Case 3 C.3.1: Male, 75, CVA He has extreme physical needs, particularly in walking and weakness, and issues with his eyesight. He is worried about his health. He relies on his wife and son for his daily care. His son provides financial support which makes him feel guilty about being a burden to them. He wishes to die rather than be a burden, despite strong family support. 1.1 3.2 C.3.2: Female, 37 years, Cancer She has to travel long distance for follow-up hospital appointments and struggles with treatment costs, despite support from family. Although working as female community health volunteer, she feels emotionally burdened and wishes for more accessible care. She is worried about being unable to support her daughters’ education. 0.4 1.6 C.3.3: Female, 95 years, COPD She has chronic illnesses, mobility issues, loneliness, and limited access to health services despite having insurance. Her daughter-in-law, the main caregiver, feels physically and emotionally tired while managing care and household responsibilities with limited support. 1.7 1.6 C.3.4: Female, 70 years, COPD She has pain, difficulty breathing and has trouble accessing medical services due to financial constraints and lacks health insurance. Her daughter-in-law cares for her while working a daily wage job and is often emotionally exhausted and burdened. 1.1 2.2 C.3.5: Male, 76 years, Paralysis He depends fully on his elderly wife for care and struggles with medicine access, daily care, and emotional stress, with no support from the community. 0.6 3.2 C.3.6: Male, 72 years, COPD He has multiple chronic illnesses, faces breathing difficulty, weakness, and high treatment costs, with limited mobility and social isolation. His elderly wife, his only caregiver, is overwhelmed by physical and emotional stress, with no external support. 0.9 2 Case 4 C.4.1: Male, 46 years, Cancer He is facing significant physical and emotional challenges due to delayed treatment and financial constraints. His wife and 15-year-old daughter share the caregiving responsibilities, which affect their health and well-being, especially with the added strain of managing household chores and agriculture. He is receiving certain nutrition allowances monthly from government. He has health insurance which is not enough to cover treatment expenses for his condition. His young son had to leave education and went to India to work to pay off loan. 1.1 3 C.4.2: Female 76 years, HTN with frailty She is struggling with multiple health issues, including hypertension and impaired vision, and faces significant challenges in managing her daily activities due to limited mobility. Although she has health insurance but lacks caregiver support, lives in isolation, and worries about how she will manage future follow up visits to local hospital. 0.8 3.6 C.4.3: Male, 68 years, COPD He faces difficulty in managing his condition and performing daily tasks. He is receiving medicines through his government insurance coverage, but specialized services are unavailable at the local hospital. His emotional and psychological well-being needs are significant, as he struggles with isolation as his only carer is wife who has to work in the fields for long hours every day. 0.6 3 C.4.4: Male, 68 years, Fall injury He is suffering from a brain injury, struggles with mobility, and has limited access to healthcare and family faces difficulties in obtaining medications. The lack of follow-up care and support has worsened his condition, increasing the burden on his wife, who provides constant care. 1.4 3.4 C.4.5: Female, 27 years, Rheumatic heart disease She experiences pain in her limbs and joints, has difficulty breathing at times, and weakness making her in need of help from her mother to carry out daily tasks like bathing and eating. She has health insurance for treatment, but she is worried about her future and the stress her illness puts on her elderly parents. 0.7 1.4 Table 4: Themes and subthemes identified 1 Everyone suffers 1.a High levels of suffering 1.b Dependency and burdens 1.c What to do? What to say? 2 Paying for healthcare 2.a Out of pocket costs 2.b Finding money and support 2.c Never enough 3 Decision making: No right answer 3.a Travel: close and difficult vs. far and expensive 3.b Staying local 3.c One direction referral process: no returns 3.d Costs and choices Theme 1: Everyone suffers This theme captures participants' lived experiences of life limiting illness, holistic suffering and the effects of their health condition on their household situations including their care needs. There are three sub-themes: High levels of suffering, Dependency and burdens, and What to do? What to say? 1.a. High levels of suffering: Most PWPCN were older adults with multiple chronic conditions including stroke, cancer, diabetes, hypertension, and chronic obstructive pulmonary disease (COPD). However, many did not have formal diagnoses despite suffering severe frailty. High levels of suffering were identified in participants with palliative care needs across the cases. Severe uncontrolled pain, weakness and poor mobility, and difficulty breathing were common. In addition to their physical suffering, participants also freely expressed psychological and emotional suffering. None of the participants had access to palliative care services or were having their symptoms or psychological suffering addressed by biomedical health services. They demonstrated limited knowledge of options to manage their pain and suffering. “I worry. I feel that I will go like this. It pains me a lot the whole night, many nights I have cried. What to do?” C.1.5: female 60 years, COPD “It is very painful; I haven’t gone anywhere. I am worried about what to do. After being ill, I worry about what to do. It is like that, how I can be content? I have illness, my heart aches. I am physically ill, there is tension in my heart, and peace is not there at all. C.4.1: male 46 years, Cancer diagnosis Their conditions made it difficult to work, travel to access healthcare, or attend social functions. Support within the home was sometimes limited because other family members were required to work. This led to a sense of abandonment and loneliness, illustrating the connectedness between physical and psychological suffering, as one of the participants stated: “I feel restless j ust sitting; it feels like ‘what to do?’… everyone goes to work and I’m alone here, no one will be here in the afternoon. When I am alone my heart hurts a lot.” C.3.3: female 95 years, COPD 1.b. Dependency and burdens Some PWPCN found it difficult to be profoundly dependent on others, mostly family members, for activities of daily living such as eating, bathing, or using the toilet due to their illness or disability. They felt this dependency was making life very hard for both themselves, and their caregivers. Several individuals expressed distress over becoming a burden to their families. Some expressed a wish to die rather than keep living with suffering and dependence on others. These feelings were compounded by a sense of helplessness in being unable to contribute to the household, which further strained family dynamics. “My daughter, son and wife talk harshly to me. They have difficulties. They have to work. They say rudely “he can't work”. They speak like that and I must bear it.” C.4.1: male 46 years, cancer The burden of care fell heavily on family members. With the working age family members needed to earn money for the household, the care responsibilities were usually carried out by the aging spouse or children, who sometimes provided round-the-clock assistance. Caregivers described physical and emotional toll, and they also experienced social isolation from supporting their loved ones, especially when the person required help with every aspect of daily life. “He cannot eat, bathe or wash his clothes, nor go to the toilet by himself.... He needs help with everything. My back hurts while bathing him… I have to watch him while eating to see if he is choking and be careful with the food.” Female 55 years, caregiver (mother) of C.1.2: male 34 years, congenital heart disease “I don't go and stay out overnight, as I can't leave my husband alone. He can't even heat and drink milk by himself anymore.” Female 75 years, caregiver (wife) of C.2.3: male 84 years, diabetes The combined impact of physical dependency, emotional burden, social isolation and economic hardship created a cycle of suffering for both participants and their caregivers. In addition to emotional exhaustion, families also faced serious financial strain (Theme 2). 1.c. What to do? What to say? The emotional and existential burden of living with palliative care needs were evidenced in this research. Participants felt helpless due to their dependency, or hopeless due to their physical and financial limitations. Some, especially older participants, felt resignation that nothing would change and some had a longing for death due to their perception of being a burden on their family. People living with palliative care needs, who should have been family earners, expressed feelings of helplessness at being unable to contribute financially for the family and children’s education. “I cannot work. I should be the one to educate them (children) but I am like this. What will they do? … What to do?” C.4.1: male 46 years, cancer Participants living alone or only with a spouse often reported a lack of support. With increasing migration of the younger generation to urban areas or abroad, elderly parents were left behind. This lack of family presence contributed significantly to the social and emotional isolation, and their helplessness. I feel lonely… I want to have someone to talk with. Where to go? Whom can I talk with? Who will be my friend?...... I feel sicker when I am alone. C.1.5: female 60 years, COPD What to say? I just stay at home whole day…I can’t do anything; I have to sit here the whole day. What to do? C.3.3: female, 95 years, COPD Others expressed a sense of resignation with despair about their future. With worsening illness, limited financial means, and distant or unavailable family members, they felt emotionally drained and wished for death to come. “Why should I go for treatment? (crying) I have only one son. How much can I trouble him? He also must take care of his family. C.3.1: male 75 years, stroke Theme 2: Paying for healthcare 2.a. Out of pocket costs Financial difficulties as a result of chronic health conditions were widely acknowledged across the four cases. Costs included medication and regular healthcare appointments for follow up. Whilst a challenge for all, this was particularly difficult for those not enrolled in the government health insurance scheme. I don’t have money to buy medicine. How would I go there (distant tertiary hospital) now? So I don't go. I don't have any way to go. C.1.5: Female 60 years, COPD The participants able to access the government health insurance scheme expressed gratitude that their treatment costs, mostly for regular medication, were covered by the insurance. This somewhat eased their financial hardship, but travel costs were still burdensome even within the district as they were not covered by insurance. Costs were greatly increased if they needed to travel out of the district for additional treatment. Insurance covers here [at the local community hospital] but I don’t think it will be enough if we have to go out [of the district]. C.4.3: Male 68 years, COPD 2.b. Finding money and support While day to day personal care was provided for by family members living in the same household, financial assistance often came from family members living elsewhere, particularly sons living and working in cities such as Kathmandu, and occasionally abroad. Assistance took two forms: either money is sent, or medicines are accessed, purchased and sent to the PWPCN from family in cities. Some older people had regular retirement pensions from previous occupation, for example from the army or police. Others received government disability or old age allowances which helped access food, healthcare and medicines. Additional sources of financial aid came from neighbours and/or low interest loans from the local communities. I get a 12,000-rupee (£80) as elderly allowance [three monthly]; then I buy medicine with that. C.3.3: female 95 years, COPD My wife brings money from a mothers’ group and spends it on my treatment. C.1.1: male 58 years, CVA 2.c. Never enough Over the course of diagnostic and treatment journeys, there was a pervasive experience that no amount of money would suffice. Treatments were stopped earlier than planned for several reasons, including ill health and travel challenges, but the financial hardship was the clearest barrier to ongoing active treatments. On occasion, participants funded their treatment by selling assets such as land and cattle; others, without assets went into debt to pursue treatment. The responsibility of repaying debt often then fell on the shoulders of other family members. “What to do, how will I get 20 to 25 lakhs (2-2.5million NPR [Nepali Rupee] around 10,800 to 13,500GBP [British Pounds]) for treatment, and selling land is also not enough. 4 to 5 lakhs (400,000 – 500,00 NPR around 2,200 to 2,700GBP) was not enough. My son who was studying has now gone to India for work.” C.4.1: male 46 years, cancer Theme 3: Decision making: No right answer The way in which individuals and their families chose to utilized local primary, secondary or tertiary health care facilities were influenced by their accessibility and their prior health care experiences. 3.a Travel: close and difficult vs. far and expensive For many participants, the nearest health facility was normally a village health post, which offered primary care but was also often difficult to access due to the rough, steep and dense forest terrain. Several participants explained that walking to these local facilities was extremely difficult or impossible due to their illness, age, or physical condition. As health posts did not offer any domiciliary health care, participants often opted to go to either to the local community hospital or hospitals outside the district. These could be reached using public transport on better roads despite the financial burden and travel-related stress which resulted. “It is difficult to walk. If there were a concrete road (to the nearest health post), I would have thought of going. The way is difficult…if anything happens on the way I worry what will I do.” C.3.6: male 72 years, COPD “A person like me can't even get there (to nearest health post) in a day. I can't do it at all. I can't walk far, it hurts. I can walk only around the house.” C.2.1: female 71 years, cancer “It takes about 3–4 hours in bus to reach hospital (tertiary hospital in next district) for follow-up. I have to change vehicles. It costs around 7–8 hundred rupees (4.00 - 4.30 GBP).” C.3.2: female 37 years, cancer 3.b Staying local Participants viewed nearby small health posts as places to go when they had simple and minor health problems, such as acute gastrointestinal ailments, coughs and headaches, for which free medications were likely to be available. However, more complex medications or advanced investigations were perceived as not locally available and so not sought at the health post. I go to the health post because of availability of free medicine, when I go because of diarrhea they give ORS [Oral Rehydration Salts]…sometimes for headache they give free medicine. C.4.2: female 76 years, hypertension and frailty “We can't get the medicine required for my condition there (health post).” C.1.5: female 60 years, COPD There was a degree of acceptance of this perceived need or obligation to travel. But others expressed frustration that appropriate services were not available locally even when their needs were not urgent or life-threatening. “If I had to go for check-up here. There's nothing here, I don’t usually have stomach-ache and fever. The problem is this joint pain or this eye problem.” C.3.1: male 75 years, CVA 3.c One direction referral process: no returns Many participants reminisced about their diagnostic journey starting at the local community hospital. Timing varied from soon to delayed, but eventually, participants with more complex conditions were frequently referred to higher centres outside the district. This was often at times of crisis when the participants were acutely and seriously unwell. This referral experience created a lasting impression that local health care services are inadequate or incapable of addressing their needs—often described as “doors being closed.” When I was ill initially, I was taken to the local hospital, they referred me on as they couldn’t treat me there. After reaching Kathmandu, it took many days to be back in my right senses. C.3.5: male 76 years, paralysis There were no reports of referrals back to the local hospital to enable individuals to get treatment closer to their homes and communities. Going back to a local hospital for follow up almost seemed incomprehensible to participants. “In (the local) hospital they only give pain relief medicine. What will that do? It had to be taken regularly. Pain can be tolerated. What to do? It is very far for ill people like me.” C.4.1: male 46 years, cancer As a result, participants frequently bypassed nearby health posts and hospitals, opting instead to travel directly to tertiary centers for all health care encounters related to their main diagnosis. Many expressed that they felt compelled to return to the same tertiary hospitals, regardless of the physical, financial, and emotional burdens involved. “I haven’t taken him to the health post. We have to take him to Kathmandu or Chitwan hospital. We don’t have the facilities here… the services he needs are not available in small hospitals so we have to take him to a big hospital and this is very expensive.” Caregiver of C.1.1: male 58 years, CVA 3.d Costs and choices Participants shared that repeated follow-up visits, long-distance travel, diagnostic tests, and medication at the tertiary out of district hospitals incurred substantial direct and indirect costs. Many reported that such financial strain led them to discontinue their planned follow-up care, resigning themselves to live with suffering due to the unsustainable cost of care. We didn't have such capacity to bear [the costs]... I had two chemotherapies. One chemotherapy cost around 45-50 thousand rupees (240-270GBP) but after the two we didn’t have any more money. [I learned that] there should be 12 rounds of chemo. Later, I heard I must continue it even more times in the future as well. I then left it. C.4.1: male 46 years, cancer The availability of health insurance services did not make everything straightforward. Those in Besisahar and Chaujahari (cases two and four) were able to access health insurance services in the community hospitals in their municipalities. However, in Rainas and Sundarbazaar (cases one and three), although many were registered with health insurance, participants needed to travel to the community hospital in Besisahar – more than one hour away. This proved too much of a barrier for some. “We have an insurance card but it’s difficult to take him (to Lamjung Hospital, Besisahar from Rainas)… he becomes unconscious immediately if his head hurts… taking the bus is a risk as the roads are bumpy and if his head touches or hits something, he will be unconscious. Now I don't have money to take him in the ambulance.” Caregiver of C.1.1: male 58 years, CVA Multi-case assertions Bringing the results together through analysis and triangulation of qualitative and quantitative data enabled us to reconsider the original propositions. Through the synthesis of data and revisiting literature the research team found consensus to develop six multi-case assertions [10]. These, listed in Box 2, summarise the findings and provide an overview of experience of illness and health seeking behaviour for PWPCNs in rural Nepal. Access to healthcare is affected by: distance to health facility, transportation, cost/family resources, location of health facility providing health insurance services Health beliefs like “better care is found in city hospitals”, reinforced by previous experience and understanding, influence health seeking behavior A complex interaction of 1 and 2 frames health seeking behavior Many rural Nepalis with life limiting conditions have high levels of serious health related suffering and unmet holistic palliative needs Nepalis with palliative care needs experience concerns over high social, psychological; and financial burden for their family, although this may be expressed less often in older people. Complex interaction of 4 and 5 leads to patients feeling helpless, hopeless or resigned. Box 2: Six final multi-case assertions DISCUSSION This is the first study using case based mixed methods to explore the experiences of people with palliative care needs in rural Nepal. High levels of physical, psychological and social needs were identified, with no-one in the study knowingly receiving palliative care services. Peoples’ unmet needs and the burden on them and their carers led to a sense of helplessness and hopelessness. Younger patients were more likely to have a specific diagnosis of a serious life-limiting illness [ 9 ] and often they expressed frustration at not having the financial resources to complete what they often saw as curative treatment, particularly as this would mean travelling far from home and incurring high indirect cost in addition to direct health costs particularly for treatment and transportation. Older people often had no specific diagnosis and had not sought health care. For them there was often a sense of resignation that their condition was a result of old age, and they should expect no difference. Some of them might have sought traditional remedies, but these were not openly spoken about. Despite health services in local health posts being available, many people did not attend these as they were perceived as being poorly equipped, did not provide necessary services and medication and were often difficult to travel to because of the hilly terrain and poor roads. Each municipality (case) studied had a community hospital. These were used particularly if they offered free services with government health insurance (two cases). The other two municipalities had not-for-profit local hospitals which provided low-cost healthcare, but which needed to be paid for out of pocket. For people in these municipalities, government insurance hospital services meant travelling to another municipality which required a long journey which was burdensome and had relatively expensive transport costs. In these municipalities people were more likely to go directly to higher-centres, which were paradoxically easier to reach than the local hospital providing ‘free’ care on health insurance. Another factor leading to avoiding local hospitals was previous experience where people had been referred on to a higher centre. The findings suggest that, in these situations, there was a belief that the local hospital was unable to manage the ongoing chronic illness, so people would continue to travel long distances to city units or not access health care at all. These findings illustrate the challenge of ‘primary health care bypassing’, a well described phenomenon in low-middle income countries which occurs due to due to costs, quality issues and perceived lack of services at the local level [ 19 ]. Nepal is struggling with the dual challenge of increasing chronic disease prevalence as the population ages, and its ongoing communicable disease burden [ 20 ]. There is a general lack of high quality NCD management available particularly at the primary care level [ 21 ] and in rural areas [ 3 , 4 ]. Health care services are often poorly coordinated, with maldistribution of staff, and challenges with finance and procurement, compounded by limited monitoring and surveillance of service [ 22 ]. This may be one reason why participants in this study perceive that they are unable to access the health care they need in their local health facilities, whether or not lack of availability is indeed the case. Parallels emerged between access to more advanced therapies and perceived competence or specialism of health care providers [ 23 ] ‘Local for simple, further away for more complex.’ Out of pocket expenditure is high particularly for people with chronic NCDs with 10% of the population in Nepal reported to experience catastrophic levels of expenditure [ 24 ]. This is continuing despite the introduction of the government health insurance system, which generally has a poor uptake, is fragmented and under-resourced [ 22 , 24 ]. Direct and indirect costs remain high even with health insurance, particularly for people who do not have convenient local access to health insurance services [ 25 ]. There is a strong evidence base for how health expenditure and poverty are self-reinforcing, sometimes leading over generations to a poverty trap, especially visible at end of life [ 26 , 27 ]. This is consistent with this study’s findings, in which familial land and animals needed to be sold to fund necessary treatments. In addition to making things financially harder for the next generation, it also creates multi-generational feelings of guilt and psychological harm. In Nepal older people frequently rely on their ‘senior persons allowance’ to access health care [ 28 ]. Those with good health self-awareness, who are physically active, are aware of free services or are enrolled in health insurance and those who have supportive family members more likely to access health care [ 29 ]. This resonates with this study’s findings that old people with palliative care needs are often poor, less active and also often as a result of lack of health self-awareness, are less likely to access health care than younger people. In the previously reported house to house survey we reported that 34% of those over 75 years with palliative care needs had not had a diagnosis of a life limiting condition [ 9 ]. Few studies in Nepal have specifically explored experiences of living with chronic illness. Kunwar et al. (2020) [ 30 ] found 75% of people with chronic renal failure had depression and poor quality of life which was particularly so if they were from a low caste and had poor socio-economic status. People with diabetes particularly in rural areas were found to have substandard diabetes management often due to poor understanding of their condition, lack of social support and lack of time given by health care workers to their management [ 4 ]. Older people were particularly found to have poor quality of life when suffering from COPD and osteoarthritis, particularly those with poor mobility, low caste and low socioeconomic status [ 31 ]. Similarly, the people with palliative care needs in this study were more likely to have high levels of physical, psychological and social suffering, particularly those who are poor, isolated and lacking family support. Nepal faces the same struggles as other low middle income countries (LMIC), with two reports comparing chronic illness and health systems in Nepal with Peru and Mozambique [ 32 , 33 ]. Chronic illness was reported to have a disruptive effect on suffers’ lives and on their families and their roles in all three settings [ 32 ]. Ambitious policies for chronic disease management existed in all three settings but they lacked technical, administrative and financial resources [ 33 ]. Patients often received poor health information and clinical guideline adherence was often non-existent. Medication accessibility, even when affordable through public health policies were often not available at the primary care level [ 33 ]. These issues along with high costs for transportation and lack of proper referral systems, illustrate that this case study’s findings are potentially relevant to other low-income contexts globally. To address Nepal’s challenges of achieving and maintaining universal health coverage, Adhikari et al. [ 20 ] argue that current primary care services need to be further developed, health insurance provision enhanced, and existing networks of community health workers and health human resources strengthened. Nepal with its sparsely populated hilly rural districts but good internet infrastructure can benefit from high value, low cost technology such as telemedicine [ 34 ], and established task shifting and sharing programmes [ 35 , 36 ]. Furthermore building on the country’s success in improving health and reducing mortality through the vertical systems of the Millenium Development Goals could enable delivery of high quality universal health coverage [ 37 ] including palliative care [ 38 ]. This multiple case study was undertaken as part of a needs assessment for the Sunita Project (2022–2025), an initiative to develop a model of palliative care for rural areas, building on the principles set out in the National Palliative Care Strategy 2017 [ 6 ]. The model aims to work with existing primary health care services in rural hospitals, health posts and with Female Community Health Volunteers (FCHV)[ 39 ]. Understanding the needs of people requiring palliative care and their health seeking behaviour has been applied to development of this model which has been evaluated. The findings from this developmental project will be published in subsequent papers. However, a short film from the Sunita Project, illustrating life with chronic life limiting illness in Nepal and possibilities for health care provision and community support has been developed and is available for viewing [ 40 ]. Strengths and Limitations Using a mixed method multiple case study approach has enabled us to gain a deep insight into needs and health seeking behaviour of PWPCN in rural Nepal. It has allowed us to compare experiences across four cases with varying demography and with different services gaining a nuanced insight into the effects of availability and lack various resources. As this is the first such study in rural Nepal it has enabled the development and testing of a model of rural palliative care. The insights could be of use in other LMIC situations where little research evidence is available. However, several limitations should be acknowledged. Distances to the research sites and difficult access meant that time for data collection was limited and at times the data lacked depth. Also, many parts of Nepal are even more remote and the experience of people living in these sites is likely to be even more challenging. Further work such as ethnographic studies where researchers can be embedded in the communities would be helpful to develop insights further. CONCLUSIONS People with palliative care needs living in rural Nepal suffer from a range of severe physical, psychological, social and spiritual problems. They rely on their families and to some extent neighbours for care, however high levels of suffering and challenges for them and their families remain. Access to formal health care is problematic with people either travelling large distances on difficult roads to receive care or doing without care at all. Accessing health care therefore leads to financial strain and although health insurance has to some extent mitigated for this, continuing direct and indirect costs are considerable. Therefore, most people were either not accessing health care services or only infrequently and many elderly despite need did not access health care at all. Perceived lack of availability of care in local hospitals led to them not being regularly used and the majority seek care from larger hospitals out of district. Chronic disease and palliative care service development in rural Nepal should focus on improving ‘within district’ health services and communicating effectively with people so that they are aware where they can access appropriate and high-quality care. Abbreviations COPD Chronic Obstructive Pulmonary Disease CVA Cerebrovascular Accident INF International Nepal Fellowship NCDs Non-Communicable Diseases NGO Non-Government Organization NPOS Nepali version of the Palliative Care Outcome Scale PWPCN People with Palliative Care Needs SPICT-LIS Supportive and Palliative Care Indicators Tool for Low Income Settings Declarations Ethics approval and consent to participate The study was conducted in accordance with the ethical principles of the Declaration of Helsinki. Ethical approval was obtained from Ethical Review Board of Nepal Health Research Council (Reference: 515/2022 P), Nepal to ensure compliance with ethical standards. Written informed consent was taken from all participants prior to data collection safeguarding their autonomy and right to withdraw at any point. Consent was taken from the legal guardian for children under 18 years. Confidentiality and anonymity were strictly maintained throughout the study to ensure research integrity. Consent for publication Not applicable Availability of data and materials Data will be made available upon reasonable request. Competing interests The authors declare no competing interest. Funding This research is a part of the ‘Sunita Project,’ a three-year UK Aid Match Funded rural palliative care development programme for Nepal delivered by INF Nepal and EMMS International. Authors' contributions DM conceptualized the study; NS, AP, SB, AT, APantha implemented the study and collected the data; AP, DM and DF analyzed the data; MJB, GF, FK and LG provided methodological support throughout the study process; AF, DM and DF wrote first draft of manuscript and all authors provided feedback and suggestions for editing of the manuscript. All authors reviewed and approved the final manuscript. 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Supplementary Files Qualitativeguides.docx Cite Share Download PDF Status: Published Journal Publication published 14 Mar, 2026 Read the published version in BMC Palliative Care → Version 1 posted Editorial decision: Revision requested 13 Feb, 2026 Reviews received at journal 12 Feb, 2026 Reviews received at journal 01 Feb, 2026 Reviewers agreed at journal 28 Jan, 2026 Reviewers agreed at journal 28 Jan, 2026 Reviewers agreed at journal 28 Jan, 2026 Reviewers agreed at journal 28 Jan, 2026 Reviewers agreed at journal 27 Jan, 2026 Reviewers agreed at journal 26 Jan, 2026 Reviewers invited by journal 26 Jan, 2026 Editor assigned by journal 26 Jan, 2026 Editor invited by journal 20 Jan, 2026 Submission checks completed at journal 19 Jan, 2026 First submitted to journal 19 Jan, 2026 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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Fellowship","correspondingAuthor":false,"prefix":"","firstName":"TImilsina","middleName":"","lastName":"Purnima","suffix":""},{"id":582053412,"identity":"3f6660d0-d619-41ce-a51d-4b305dac4a32","order_by":6,"name":"Shrestha Namuna","email":"","orcid":"","institution":"Univesity of Huddersfield","correspondingAuthor":false,"prefix":"","firstName":"Shrestha","middleName":"","lastName":"Namuna","suffix":""},{"id":582053421,"identity":"d5fdccf8-5aab-4dfb-864b-7b4155cdde30","order_by":7,"name":"Maya Jane Bates","email":"","orcid":"","institution":"Kamuzu University of Health Sciences","correspondingAuthor":false,"prefix":"","firstName":"Maya","middleName":"Jane","lastName":"Bates","suffix":""},{"id":582053423,"identity":"a227d9d2-88bd-4e46-8a67-8e7ab8fab4d6","order_by":8,"name":"Farzana Khan","email":"","orcid":"","institution":"University of Edinburgh","correspondingAuthor":false,"prefix":"","firstName":"Farzana","middleName":"","lastName":"Khan","suffix":""},{"id":582053428,"identity":"7892da24-8c0c-4050-911e-bb63ceb977b0","order_by":9,"name":"Genevie Fernandes","email":"","orcid":"","institution":"University of Edinburgh","correspondingAuthor":false,"prefix":"","firstName":"Genevie","middleName":"","lastName":"Fernandes","suffix":""},{"id":582053430,"identity":"fa9ac912-1a8e-4119-840b-0236a3b5a93f","order_by":10,"name":"Liz Grant","email":"","orcid":"","institution":"University of Edinburgh","correspondingAuthor":false,"prefix":"","firstName":"Liz","middleName":"","lastName":"Grant","suffix":""},{"id":582053432,"identity":"2fa37375-c8e1-4b9b-82f9-816c8cc4d48f","order_by":11,"name":"David Fearon","email":"","orcid":"","institution":"University of Edinburgh","correspondingAuthor":false,"prefix":"","firstName":"David","middleName":"","lastName":"Fearon","suffix":""}],"badges":[],"createdAt":"2026-01-15 12:53:47","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-8610619/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-8610619/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12904-026-02055-7","type":"published","date":"2026-03-14T15:58:15+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":101436867,"identity":"52a37d70-a219-4a00-9fd8-90e1eb04d6c3","added_by":"auto","created_at":"2026-01-29 16:26:37","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":72147,"visible":true,"origin":"","legend":"\u003cp\u003eVisual overview of the formation of units of analysis and multiple cases\u003c/p\u003e","description":"","filename":"Figure1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-8610619/v1/90b071bd0e342b6e891c6178.jpg"},{"id":104739352,"identity":"f4ca23b3-c9a3-4bfd-ad3b-76e9298b4b67","added_by":"auto","created_at":"2026-03-16 16:03:36","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1194458,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8610619/v1/0ecb773c-d7f3-4b8d-90bb-840343835eab.pdf"},{"id":101436869,"identity":"c2d24164-d65f-42a9-b590-cdadcc29e9a0","added_by":"auto","created_at":"2026-01-29 16:26:38","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":37882,"visible":true,"origin":"","legend":"","description":"","filename":"Qualitativeguides.docx","url":"https://assets-eu.researchsquare.com/files/rs-8610619/v1/c0207f45002c7ff7f7906c83.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Challenges and suffering of people with advanced illness in rural Nepal: A mixed method multiple case study in four municipalities","fulltext":[{"header":"BACKGROUND","content":"\u003cp\u003eAlong with other low and lower-middle income countries, Nepal is experiencing a demographic change as more people live with and die from chronic illness. Life expectancy at birth increased from 58 years to 71 years between 1990 and 2017 [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e] and deaths from non-communicable diseases (NCD) more than doubled (30% to 70%) in the same period [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. Health service development has not kept pace with the rapid increase in chronic illness, particularly for those in rural areas [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Palliative care has been established in the country for 25 years but services reach only a small proportion of people, typically those living with cancer in larger cities [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. The need for development of appropriate palliative care close to where people live and for other illnesses was acknowledged by the government in 2017 with a National Strategy for Palliative Care [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. This strategy proposed that primary palliative care should be established in government provided district hospitals and surrounding village health posts, incorporating the expertise of female community health volunteers (FCVH) [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e] .\u003c/p\u003e \u003cp\u003eIn 2021 the health system in Nepal underwent a major reorganization. The new health system is organized across three levels - federal, provincial and local. At local level, rural communities are served by health posts and community hospitals managed either by the government or by non-governmental organizations (NGOs) within municipalities, which are political divisions within districts in Nepal. The national strategy for palliative care has been updated accordingly and approved by the Government of Nepal in 2025 [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe Sunita Project, a three-year UK Aid Match Funded programme delivered by EMMS International and INF Nepal, sought to implement rural aspects of the national strategy between 2022 and 2025. Research for the project aimed to explore and understand the experiences of rural Nepalese living with palliative care needs, their health seeking behaviours and the experiences of those who care for them. An earlier article presented the quantitative findings from a house to house survey which formed part of this research [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Here we present the results of a mixed method multiple case study building on results presented in that earlier article.\u003c/p\u003e"},{"header":"METHODS","content":"\u003cp\u003eA multiple case study design was employed for this research. This approach was chosen because it facilitates in-depth exploration of a phenomenon as experienced by or in different units or cases [\u003cspan class=\"CitationRef\"\u003e10\u003c/span\u003e]. This was framed within a constructivist paradigm which allows an appreciation for the various world views held by the participants and international research team, allowing space for the presence and construction of multiple realities of experience and understanding [\u003cspan class=\"CitationRef\"\u003e11\u003c/span\u003e] .\u003c/p\u003e\n\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\n \u003ch2\u003eStudy setting\u003c/h2\u003e\n \u003cp\u003eThe study was undertaken in two rural districts in west Nepal, Lamjung and West Rukum.\u003c/p\u003e\n\u003c/div\u003e\n\u003ch3\u003eStudy population\u003c/h3\u003e\n\u003cp\u003eThe study incorporated four cases, with a case defined as a single municipality within which two communities were sampled. The communities were identified with the assistance of the municipality government\u0026rsquo;s health officials. Each case was characterized by their rurality and remoteness from large conurbations. In addition to small rural health posts, each case was served by a rural community hospital.\u003c/p\u003e\n\u003ch3\u003eEthics\u003c/h3\u003e\n\u003cp\u003eThe study was approved by Ethical Review M\u0026amp;E Section of Nepal Health Research Council (Number 515/2022). Approval for the study was given by each municipality mayor and no requests for approval were rejected. Informed consent was obtained from all participants. For the under 18s interviewed, guardian consent was also obtained.\u003c/p\u003e\n\u003ch3\u003eRecruitment\u003c/h3\u003e\n\u003cp\u003eScreening house to house surveys were carried out in all the homes in the two communities of each case. Where the screening suggested the potential presence of a person with palliative care needs (PWPCN) i.e. living with chronic illness, disability or old and frail, the Supportive and Palliative Care Indicators Tool \u0026ndash; Low Income Settings (SPICT-LIS) was completed. An individual would be eligible for recruitment if scoring positive for palliative care needs on the SPICT-LIS general indicators. Potential participants were the PWPCN or their primary carer if they were unable to participate. They were provided with study information verbally and written if they were literate. After having time to consider the request, those wishing to participate gave their informed consent and then completed a survey questionnaire covering demographics, diagnosis, health seeking behaviour, and an assessment of palliative care needs using the Nepali Palliative care Outcome Scale (NPOS)[\u003cspan class=\"CitationRef\"\u003e12\u003c/span\u003e]. Further details of the questionnaire and results from it were published in the earlier article [\u003cspan class=\"CitationRef\"\u003e9\u003c/span\u003e]\u003c/p\u003e\n\u003cp\u003eThese data were then used to purposively identify a theoretical (sub)-sample of \u0026ldquo;units of analyses\u0026rdquo; defined as PWPCN and any carer drawn from those identified within each case. Additional data was sought from key informants within each case (e.g. teachers, social workers, primary health care providers) to enable deeper understanding of the context of each case.\u003c/p\u003e\n\u003ch3\u003eData collection\u003c/h3\u003e\n\u003cp\u003eSurvey data were recorded onto tablets using KOBO Toolbox[\u003cspan class=\"CitationRef\"\u003e13\u003c/span\u003e]. Semi-structured interviews were conducted by public health trained Nepali fieldworkers in the local language in respondents\u0026rsquo; homes at times convenient to them. Interview topic guides are available in Supplementary File \u0026minus;\u0026thinsp;1. Interview data were audio-recorded and transcribed verbatim, then translated into English before analysis. Ten percent of transcripts were translated by two researchers as a quality assurance measure. Field notes and reflective journals were kept by the research team. Anonymised English translations were exported into Atlas.ti software programme for analysis [\u003cspan class=\"CitationRef\"\u003e14\u003c/span\u003e] .\u003c/p\u003e\n\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\n \u003ch2\u003eData analysis\u003c/h2\u003e\n \u003cp\u003eThe analysis and synthesis of the quantitative and qualitative data in this multi-case study research alternated between the uniqueness and particularity of the individual cases with that of the phenomenon as experienced across the cases [\u003cspan class=\"CitationRef\"\u003e10\u003c/span\u003e]. Propositions (Box 1) served as a framework for the case study by maintaining its boundaries and feasibility. [\u003cspan class=\"CitationRef\"\u003e15\u003c/span\u003e]\u003c/p\u003e\n \u003cp\u003eThe propositions were developed by members of the research team (AP, SB, AdP, PT, DM), drawing on the palliative care research literature from Low- and Middle-Income country (LMIC) contexts, and on the authors\u0026rsquo; (DF, MJB, LG) experience of palliative care research, advocacy and clinical practice in Asia, Latin America, and Africa.\u003c/p\u003e\n \u003ctable style=\"width: 100%;\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 100.0000%;\"\u003e\n \u003col\u003e\n \u003cli\u003eIt is challenging for people to access healthcare in Nepal because of the terrain and poverty\u003c/li\u003e\n \u003cli\u003eHealth beliefs impact and influence healthcare seeking behaviour\u003c/li\u003e\n \u003cli\u003eThe interaction between individuals, local and cultural health beliefs with terrain and poverty influencing health seeking behaviour (1 \u0026amp; 2 combined)\u003c/li\u003e\n \u003c/ol\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003cp\u003eBox 1: Propositions\u003c/p\u003e\n \u003cp\u003eData were first analyzed on a within-case basis. Data from the survey, SPICT-LIS and NPOS were analyzed using Microsoft Excel and plotted in graph and chart format. Individual journeys and experiences of each PWPCN were summarized in descriptive narratives. These narratives were enriched with the NPOS data, selected quotations and excerpts from the field notes and reflective journals. This was consistent with Stake\u0026rsquo;s suggestions to initially use narratives and \u0026lsquo;thick descriptions\u0026rsquo; to interpret and present findings [\u003cspan class=\"CitationRef\"\u003e16\u003c/span\u003e] .\u003c/p\u003e\n \u003cp\u003eThe English translations of the interview transcripts were thematically analysed using Atlas.ti by the researchers (AP, DF and DM). This included familiarisation through reading and re-reading of the transcripts, line-by-line coding, and organisation of codes into categories [\u003cspan class=\"CitationRef\"\u003e17\u003c/span\u003e]. The analytical process then shifted from an inductive (within-case) to a deductive thematic analysis (cross-case), in which categories and provisional themes were iteratively refined and matured in response to the emerging data and reflective practices over the course of the research [\u003cspan class=\"CitationRef\"\u003e18\u003c/span\u003e]. Throughout this process, the researchers (AP, DF and DM) worked collaboratively and regularly revisited the NPOS data, survey data, interview transcripts, narratives, coding and provisional themes to seek deeper understanding of the developing interpretations and patterns in the data. At the conclusion of the study, the authors team formulated six \u0026lsquo;multi-case assertions\u0026rsquo; based on the propositions which are presented after the results.\u003c/p\u003e\n\u003c/div\u003e"},{"header":"RESULTS","content":"\u003cp\u003eBetween March 2023 and September 2023, 587 households were surveyed across the four cases. The number of households per case ranged from 140 to 161 (table 1). From these, 58 people were identified as PWPCN (5 to 21 per case). Twenty of the 58 were purposively selected as units of analysis. In total, 52 people were approached and invited to participate. 17 interviews were with PWPCN (three of the 20 were not able to undertake an interview), 15 with their adult carers, 2 with young carers (less that 18 years of age), and 16 with key informants such as municipal health coordinators, doctors, primary health workers, female community health volunteers (FCHV), and social workers or community leaders \u0026nbsp;(figure 1).\u003c/p\u003e\n\u003cp\u003eFigure 1: \u0026nbsp;Visual overview of the formation of units of analysis and multiple cases \u0026nbsp;\u003cem\u003e- Insert here\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eThe cases\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll cases were in hilly rural areas where the commonest occupation is subsistence agriculture. Populations included a number of different ethnic groups who live in hill regions of Nepal. \u0026nbsp;Three cases were located in Lamjung District and one in the West Rukum District of Nepal. \u0026nbsp;Each case\u0026rsquo;s community hospital varied in size from 15 to 60 beds and provided basic health care including emergency medicine, surgery and obstetric care. In two cases community hospitals offered low-cost care as part of the government health insurance system. Referral hospitals at provincial level were at least three hours from each municipality. No case had formal palliative care services at their hospital or in their community at the time of the data collection (Table 2).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eUnits of Analysis\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe twenty participants with palliative care needs are presented in Table 3, including brief exerts from the narratives of each.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eThemes\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThemes and sub-themes were identified through thematic analysis and are presented in Table 4.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1: Quantitative details of cases\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"799\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 234px;\"\u003e\n \u003cp\u003eVariables\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003eTotal\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003eCase 1: Rainas\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003eCase 2:\u003c/p\u003e\n \u003cp\u003eSundarbazar\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003eCase 3: Besisahar\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003eCase 4: Chaurjahari\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 234px;\"\u003e\n \u003cp\u003eHouseholds surveyed\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e587\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e141\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e161\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e145\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e140\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 234px;\"\u003e\n \u003cp\u003ePeople identified in the House-to-House Survey\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e2320\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e546\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e625\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e544\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e605\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 234px;\"\u003e\n \u003cp\u003eSPICT-LIS completed\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e229\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e61\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e74\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e67\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e27\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 234px;\"\u003e\n \u003cp\u003eNumber identified with SPICT-LIS as having palliative care needs\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e58\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e21\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 234px;\"\u003e\n \u003cp\u003eNPOS completed with those with palliative care needs\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e58\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e21\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 234px;\"\u003e\n \u003cp\u003eAge in years: range (mean)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e21-98 (79)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e34-87 (74)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e21-97 (82)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e71-98 (81)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e27-76 (68)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 234px;\"\u003e\n \u003cp\u003eWith a diagnosis of a chronic illness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e44\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e17\u003csup\u003ea\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e15\u003csup\u003ea\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e7\u003csup\u003ea\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"7\" style=\"width: 95px;\"\u003e\n \u003cp\u003ePrimary diagnosis\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 140px;\"\u003e\n \u003cp\u003eCardiovascular\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e22\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e11\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 140px;\"\u003e\n \u003cp\u003eChronic Obstructive Pulmonary Disease\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 140px;\"\u003e\n \u003cp\u003eCancer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 140px;\"\u003e\n \u003cp\u003eDiabetes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 140px;\"\u003e\n \u003cp\u003eChronic kidney disease\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 140px;\"\u003e\n \u003cp\u003eTrauma\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 140px;\"\u003e\n \u003cp\u003eUndefined diagnosis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003ePurposively Sampled\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 140px;\"\u003e\n \u003cp\u003eIndividual with Palliative Care Need\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e20\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"6\" style=\"width: 95px;\"\u003e\n \u003cp\u003eInterviews\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 140px;\"\u003e\n \u003cp\u003ePerson living with palliative care needs\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 140px;\"\u003e\n \u003cp\u003eAdult carer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 140px;\"\u003e\n \u003cp\u003eYoung carer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 140px;\"\u003e\n \u003cp\u003eHealth workers\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e16\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 140px;\"\u003e\n \u003cp\u003eSocial worker/ community leaders\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 140px;\"\u003e\n \u003cp\u003eTotal number of interviews\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e52\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 121px;\"\u003e\n \u003cp\u003e16\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 109px;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 138px;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003csup\u003ea\u003c/sup\u003e a number of participants had multimorbidity\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2 \u0026ndash; Summary characteristics of cases\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 228px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCase: Municipality\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(district)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 186px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e1: Rainas\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(Lamjung)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 168px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e2: Besisahar (Lamjung)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 174px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e3: Sundabazaar (Lamjung)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 153px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e4: Chaurjahari (West Rukum)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 228px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003ePopulation (2021)\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 186px;\"\u003e\n \u003cp\u003e17,402\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 168px;\"\u003e\n \u003cp\u003e38,232\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 174px;\"\u003e\n \u003cp\u003e27,043\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 153px;\"\u003e\n \u003cp\u003e28,956\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 228px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eCommunity Hospital\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 186px;\"\u003e\n \u003cp\u003eSahodar Community Hospital\u003csup\u003ea\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 168px;\"\u003e\n \u003cp\u003eLamjung Hospital\u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 174px;\"\u003e\n \u003cp\u003eNamuna Community Hospital\u003csup\u003ea\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 153px;\"\u003e\n \u003cp\u003eChaurjahari Hospital\u003csup\u003ea\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 228px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eHealth Insurance at hospital\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 186px;\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 168px;\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 174px;\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 153px;\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 228px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eTime (vehicle) to Community Hospital\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 186px;\"\u003e\n \u003cp\u003e\u0026lt;1 hour\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 168px;\"\u003e\n \u003cp\u003eEither* \u0026lt; 1hour or\u003c/p\u003e\n \u003cp\u003e1.5 \u0026ndash; 2 hours\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 174px;\"\u003e\n \u003cp\u003eEither* \u0026lt; 1 hour or 2 \u0026ndash; 3 hours\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 153px;\"\u003e\n \u003cp\u003e1.5 \u0026ndash; 2 hours\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 228px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eHuman Development Index\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"3\" style=\"width: 528px;\"\u003e\n \u003cp\u003e0.507 (Lamjung District)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 153px;\"\u003e\n \u003cp\u003e0.431\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e(Rukum District)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 228px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eLiteracy Rate\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 186px;\"\u003e\n \u003cp\u003e76.1%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 168px;\"\u003e\n \u003cp\u003e81.1%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 174px;\"\u003e\n \u003cp\u003e81.4%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 153px;\"\u003e\n \u003cp\u003e65.5%\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003csup\u003ea\u0026nbsp;\u003c/sup\u003eNon-Governmental Organisation (NGO); \u003csup\u003eb\u0026nbsp;\u003c/sup\u003eGovernment; * different area of municipality where data were collected\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 3 \u0026ndash; Narratives of units of analysis\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"595\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003ePerson with palliative care needs\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eBrief narrative exerts\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003eNPOS Average (Physical)\u003c/p\u003e\n \u003cp\u003eScale 0 (no suffering) to 4 (unbearable)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003eNPOS Average (spiritual, emotional, psychosocial)\u003c/p\u003e\n \u003cp\u003eScale 0 (no suffering) to 4 (unbearable)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" valign=\"top\" style=\"width: 595px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCase 1\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.1.1:\u003c/p\u003e\n \u003cp\u003eMale, 58 years, CVA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eHe struggles with right-sided weakness and recurrent seizures. Despite having a disability card and government insurance, he faces challenges in accessing healthcare due to transportation issues, impacting his seizure treatment and follow-ups. His wife is burdened by caregiving and household responsibilities. He expressed feeling like a burden on wife, sometimes wishing for death to relieve her of the strain.\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1.4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e0.8\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.1.2:\u003c/p\u003e\n \u003cp\u003eMale, 34 years, Congenital heart disease\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eHe has severe physical limitations and is supported mainly by his aging mother. She provides full-time care but is concerned about the physical, emotional, and financial toll on her, and fears who will care for him after her death. Despite health insurance, the family struggles with medical costs and lacks support, making their future uncertain. They had received little financial support from government or their community.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1.5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e3.2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.1.3:\u003c/p\u003e\n \u003cp\u003eMale, 79 years, COPD\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eHe faces challenges such as joint pain, back pain, and difficulty walking. He is dependent on his daughter primarily and other family members for financial assistance for medical expenses. He has no health insurance and often struggles with the cost of care. His daughter is emotionally and physically burdened by caregiving and is worried about her own life.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e0.7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e2.4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.1.4:\u003c/p\u003e\n \u003cp\u003eMale, 77 years, Cancer\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eHe struggles with walking, pain, and incontinence. He lives with his younger son, who takes care of him and covers his medical costs, despite significant financial challenges. He is not enrolled in insurance. He is in need of a new prosthetic leg. His son feels guilty for not being able to afford better care.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1.1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.1.5:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eFemale, 60 years, COPD\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eShe struggles with walking, chest pain, and body aches. She is worried about being alone, as her daughters and son are far away. She has spent lots of money on treatment, and is dependent on her son financially who now rarely sends money. Despite having current troubling symptoms, she has decided to wait until she can go for follow up at a higher center in the distant city. This is a private hospital and is not enrolled in insurance.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1.1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" valign=\"top\" style=\"width: 595px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCase 2\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.2.1:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eFemale, 71 years, Cancer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eShe lives alone and manages her house but struggles with pain and dizziness. She receives support from her family and neighbors, though she sometimes feels tired from her long distance journeys for treatment.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e0.4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.2.2:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eMale, 75 years, Hypertension\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eHe has mobility issues, struggles with pain, weakness, and difficulty in accessing specialized care. His 70-year-old wife, despite her own health problems, is the sole caregiver and feels physically and emotionally burdened without family or community support. He manages expenses with their small pension payments.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1.3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e2.8\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.2.3:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eMale, 84 years, Diabetes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eHe needs help with daily tasks. His wife, who is also frail, cares for him despite her own health challenges, and they receive support from their children and neighbors. Finances are managed by their pension.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e0.3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.2.4:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eMale, 71 years, Hypertension \u0026amp; Diabetes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eHe had paralysis and cannot do many things by himself. He struggles with feelings of helplessness and isolation. He is accessing treatment from the local hospital having government health insurance. His old wife takes care of him with little additional help.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1.3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" valign=\"top\" style=\"width: 595px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCase 3\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.3.1:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eMale, 75, CVA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eHe has extreme physical needs, particularly in walking and weakness, and issues with his eyesight. He is worried about his health. He relies on his wife and son for his daily care. \u0026nbsp;His son provides financial support which makes him feel guilty about being a burden to them. He wishes to die rather than be a burden, despite strong family support.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1.1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e3.2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.3.2:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eFemale, 37 years, Cancer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eShe has to travel long distance for follow-up hospital appointments and struggles with treatment costs, despite support from family. Although working as female community health volunteer, she feels emotionally burdened and wishes for more accessible care. She is worried about being unable to support her daughters\u0026rsquo; education.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e0.4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1.6\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.3.3:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eFemale, 95 years, COPD\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eShe has chronic illnesses, mobility issues, loneliness, and limited access to health services despite having insurance. Her daughter-in-law, the main caregiver, feels physically and emotionally tired while managing care and household responsibilities with limited support.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1.7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1.6\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.3.4:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eFemale, 70 years, COPD\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eShe has pain, difficulty breathing and has trouble accessing medical services due to financial constraints and lacks health insurance. Her daughter-in-law cares for her while working a daily wage job and is often emotionally exhausted and burdened.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1.1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e2.2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.3.5:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eMale, 76 years, Paralysis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eHe depends fully on his elderly wife for care and struggles with medicine access, daily care, and emotional stress, with no support from the community.\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e0.6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e3.2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.3.6:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eMale, 72 years, COPD\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eHe has multiple chronic illnesses, faces breathing difficulty, weakness, and high treatment costs, with limited mobility and social isolation. His elderly wife, his only caregiver, is overwhelmed by physical and emotional stress, with no external support.\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e0.9\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" valign=\"top\" style=\"width: 595px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCase 4\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.4.1:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eMale, 46 years, Cancer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eHe is facing significant physical and emotional challenges due to delayed treatment and financial constraints. His wife and 15-year-old daughter share the caregiving responsibilities, which affect their health and well-being, especially with the added strain of managing household chores and agriculture. \u0026nbsp;He is receiving certain nutrition allowances monthly from government. He has health insurance which is not enough to cover treatment expenses for his condition. His young son had to leave education and went to India to work to pay off loan.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1.1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.4.2:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eFemale 76 years, HTN with frailty\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eShe is struggling with multiple health issues, including hypertension and impaired vision, and faces significant challenges in managing her daily activities due to limited mobility. Although she has health insurance but lacks caregiver support, lives in isolation, and worries about how she will manage future follow up visits to local hospital.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e0.8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e3.6\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.4.3:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eMale, 68 years, COPD\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eHe faces difficulty in managing his condition and performing daily tasks. He is receiving medicines through his government insurance coverage, but specialized services are unavailable at the local hospital. His emotional and psychological well-being needs are significant, as he struggles with isolation as his only carer is wife who has to work in the fields for long hours every day.\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e0.6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.4.4:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eMale, 68 years, Fall injury\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eHe is suffering from a brain injury, struggles with mobility, and has limited access to healthcare and family faces difficulties in obtaining medications. The lack of follow-up care and support has worsened his condition, increasing the burden on his wife, who provides constant care.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1.4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e3.4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eC.4.5:\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eFemale, 27 years, Rheumatic heart disease\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eShe experiences pain in her limbs and joints, has difficulty breathing at times, and weakness making her in need of help from her mother to carry out daily tasks like bathing and eating. She has health insurance for treatment, but she is worried about her future and the stress her illness puts on her elderly parents.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e0.7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e1.4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 4: Themes and subthemes identified\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"425\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 425px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e1 \u0026nbsp; Everyone suffers\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 425px;\"\u003e\n \u003cp\u003e1.a High levels of suffering\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1.b Dependency and burdens\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e1.c What to do? What to say?\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 425px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e2 \u0026nbsp; Paying for healthcare\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 425px;\"\u003e\n \u003cp\u003e\u003cem\u003e2.a Out of pocket costs\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e2.b Finding money and support\u003c/p\u003e\n \u003cp\u003e2.c \u003cem\u003eNever enough\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 425px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e3 \u0026nbsp; Decision making: No right answer\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 425px;\"\u003e\n \u003cp\u003e3.a Travel: \u003cem\u003eclose and difficult vs. far and expensive\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e3.b Staying local \u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e3.c One direction referral process: no returns\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e3.d Costs and choices\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eTheme 1: Everyone suffers \u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis theme captures participants\u0026apos; lived experiences of life limiting illness, holistic suffering and the effects of their health condition on their household situations including their care needs. There are three sub-themes: \u003cem\u003eHigh levels of suffering,\u003c/em\u003e \u003cem\u003eDependency and burdens, and What to do? What to say?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e1.a. High levels of suffering:\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMost PWPCN were older adults with multiple chronic conditions including stroke, cancer, diabetes, hypertension, and chronic obstructive pulmonary disease (COPD). However, many did not have formal diagnoses despite suffering severe frailty. High levels of suffering were identified in participants with palliative care needs across the cases. Severe uncontrolled pain, weakness and poor mobility, and difficulty breathing were common. In addition to their physical suffering, participants also freely expressed psychological and emotional suffering. None of the participants had access to palliative care services or were having their symptoms or psychological suffering addressed by biomedical health services. They demonstrated limited knowledge of options to manage their pain and suffering.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I worry. I feel that I will go like this. It pains me a lot the whole night, many nights I have cried. What to do?\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.1.5: female 60 years, COPD\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;It is very painful; I haven\u0026rsquo;t gone anywhere. I am worried about what to do. After being ill, I worry about what to do. It is like that, how I can be content? I have illness, my heart aches. I am physically ill, there is tension in my heart, and peace is not there at all.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.4.1: male 46 years, Cancer diagnosis\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTheir conditions made it difficult to work, travel to access healthcare, or attend social functions. Support within the home was sometimes limited because other family members were required to work. This led to a sense of abandonment and loneliness, illustrating the connectedness between physical and psychological suffering, as one of the participants stated:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I feel restless j\u003c/em\u003e\u003cem\u003eust sitting; it feels like \u0026lsquo;what to do?\u0026rsquo;\u0026hellip; everyone goes to work and I\u0026rsquo;m alone here, no one will be here in the afternoon. When I am alone my heart hurts a lot.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.3.3: female 95 years, COPD\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e1.b. Dependency and burdens\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eSome PWPCN found it difficult to be profoundly dependent on others, mostly family members, for activities of daily living such as eating, bathing, or using the toilet due to their illness or disability. They felt this dependency was making life very hard for both themselves, and their caregivers. Several individuals expressed distress over becoming a burden to their families. Some expressed a wish to die rather than keep living with suffering and dependence on others. These feelings were compounded by a sense of helplessness in being unable to contribute to the household, which further strained family dynamics.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;My daughter, son and wife talk harshly to me. They have difficulties. They have to work. They say rudely \u0026ldquo;he can\u0026apos;t work\u0026rdquo;. They speak like that and I must bear it.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.4.1: male 46 years, cancer\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe burden of care fell heavily on family members. With the working age family members needed to earn money for the household, the care responsibilities were usually carried out by the aging spouse or children, who sometimes provided round-the-clock assistance. Caregivers described physical and emotional toll, and they also experienced social isolation from supporting their loved ones, especially when the person required help with every aspect of daily life.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;He cannot eat, bathe or wash his clothes, nor go to the toilet by himself.... He needs help with everything. My back hurts while bathing him\u0026hellip; I have to watch him while eating to see if he is choking and be careful with the food.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFemale 55 years, caregiver (mother) of C.1.2: male 34 years, congenital heart disease\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I don\u0026apos;t go and stay out overnight, as I can\u0026apos;t leave my husband alone. He can\u0026apos;t even heat and drink milk by himself anymore.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;Female 75 years, caregiver (wife) of C.2.3: male 84 years, diabetes\u003c/p\u003e\n\u003cp\u003eThe combined impact of physical dependency, emotional burden, social isolation and economic hardship created a cycle of suffering for both participants and their caregivers. In addition to emotional exhaustion, families also faced serious financial strain (Theme 2).\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e1.c. What to do? What to say?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe emotional and existential burden of living with palliative care needs were evidenced in this research. Participants felt helpless due to their dependency, or hopeless due to their physical and financial limitations. Some, especially older participants, felt resignation that nothing would change and some had a longing for death due to their perception of being a burden on their family.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePeople living with palliative care needs, who should have been family earners, expressed feelings of helplessness at being unable to contribute financially for the family and children\u0026rsquo;s education.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I cannot work. I should be the one to educate them (children) but I am like this. What will they do? \u0026hellip; What to do?\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.4.1: male 46 years, cancer\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eParticipants living alone or only with a spouse often reported a lack of support. With increasing migration of the younger generation to urban areas or abroad, elderly parents were left behind. This lack of family presence contributed significantly to the social and emotional isolation, and their helplessness.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eI feel lonely\u0026hellip; I want to have someone to talk with. Where to go? Whom can I talk with? Who will be my friend?...... I feel sicker when I am alone.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.1.5: female 60 years, COPD\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eWhat to say? I just stay at home whole day\u0026hellip;I can\u0026rsquo;t do anything; I have to sit here the whole day. What to do? \u0026nbsp;\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.3.3: female, 95 years, COPD\u003c/p\u003e\n\u003cp\u003eOthers expressed a sense of resignation with despair about their future. With worsening illness, limited financial means, and distant or unavailable family members, they felt emotionally drained and wished for death to come.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Why should I go for treatment? (crying) I have only one son. How much can I trouble him? He also must take care of his family.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.3.1: male 75 years, stroke\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eTheme 2:\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003cstrong\u003e\u003cem\u003ePaying for healthcare\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e2.a. Out of pocket costs\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFinancial difficulties as a result of chronic health conditions were widely acknowledged across the four cases. Costs included medication and regular healthcare appointments for follow up. Whilst a challenge for all, this was particularly difficult for those not enrolled in the government health insurance scheme.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eI don\u0026rsquo;t have money to buy medicine. How would I go there (distant tertiary hospital) now? So I don\u0026apos;t go. I don\u0026apos;t have any way to go.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.1.5: Female 60 years, COPD\u003c/p\u003e\n\u003cp\u003eThe participants able to access the government health insurance scheme expressed gratitude that their treatment costs, mostly for regular medication, were covered by the insurance. This somewhat eased their financial hardship, but travel costs were still burdensome even within the district as they were not covered by insurance. Costs were greatly increased if they needed to travel out of the district for additional treatment.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eInsurance covers here [at the local community hospital] but I don\u0026rsquo;t think it will be enough if we have to go out [of the district].\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.4.3: Male 68 years, COPD\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e2.b. Finding money and support\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eWhile day to day personal care was provided for by family members living in the same household, financial assistance often came from family members living elsewhere, particularly sons living and working in cities such as Kathmandu, and occasionally abroad. Assistance took two forms: either money is sent, or medicines are accessed, purchased and sent to the PWPCN from family in cities.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSome older people had regular retirement pensions from previous occupation, for example from the army or police. Others received government disability or old age allowances which helped access food, healthcare and medicines. Additional sources of financial aid came from neighbours and/or low interest loans from the local communities.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eI get a 12,000-rupee (\u0026pound;80) as elderly allowance [three monthly]; then I buy medicine with that.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.3.3: female 95 years, COPD\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eMy wife brings money from a mothers\u0026rsquo; group and spends it on my treatment.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.1.1: male 58 years, CVA\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e2.c. Never enough\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eOver the course of diagnostic and treatment journeys, there was a pervasive experience that no amount of money would suffice. Treatments were stopped earlier than planned for several reasons, including ill health and travel challenges, but the financial hardship was the clearest barrier to ongoing active treatments. On occasion, participants funded their treatment by selling assets such as land and cattle; others, without assets went into debt to pursue treatment. The responsibility of repaying debt often then fell on the shoulders of other family members.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp;\u0026ldquo;What to do, how will I get 20 to 25 lakhs (2-2.5million NPR [Nepali Rupee] around 10,800 to 13,500GBP [British Pounds]) for treatment, and selling land is also not enough. 4 to 5 lakhs (400,000 \u0026ndash; 500,00 NPR around 2,200 to 2,700GBP) was not enough. My son who was studying has now gone to India for work.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.4.1: male 46 years, cancer\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eTheme 3: Decision making: No right answer\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe way in which individuals and their families chose to utilized local primary, secondary or tertiary health care facilities were influenced by their accessibility and their prior health care experiences.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e3.a \u003cem\u003eTravel: close and difficult vs. far and expensive\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFor many participants, the nearest health facility was normally a village health post, which offered primary care but was also often difficult to access due to the\u0026nbsp;rough, steep and dense forest terrain. Several participants explained that walking to these local facilities was extremely difficult or impossible due to their illness, age, or physical condition. As health posts did not offer any domiciliary health care, participants often opted to go to either to the local community hospital or hospitals outside the district. These could be reached using public transport on better roads despite the financial burden and travel-related stress which resulted.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;It is difficult to walk. If there were a concrete road (to the nearest health post), I would have thought of going. The way is difficult\u0026hellip;if anything happens on the way I worry what will I do.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.3.6: male 72 years, COPD\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp;\u0026ldquo;A person like me can\u0026apos;t even get there (to\u0026nbsp;\u003c/em\u003e\u003cem\u003enearest health post)\u003c/em\u003e\u003cem\u003e\u0026nbsp;in a day. I can\u0026apos;t do it at all. I can\u0026apos;t walk far, it hurts. I can walk only around the house.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.2.1: female 71 years, cancer\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;It takes about 3\u0026ndash;4 hours in bus to reach hospital (tertiary hospital in next district) for follow-up. I have to change vehicles. It costs around 7\u0026ndash;8 hundred rupees (4.00 - 4.30 GBP).\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.3.2: female 37 years, cancer\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e3.b Staying local \u0026nbsp;\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParticipants viewed nearby small health posts as places to go when they had simple and minor health problems, such as acute gastrointestinal ailments, coughs and headaches, for which free medications were likely to be available. However, more complex medications or advanced investigations were perceived as not locally available and so not sought at the health post.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eI go to the health post because of availability of free medicine, when I go because of diarrhea they give ORS [Oral Rehydration Salts]\u0026hellip;sometimes for headache they give free medicine.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.4.2: female 76 years, hypertension and frailty\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp;\u0026ldquo;We can\u0026apos;t get the medicine required for my condition there (health post).\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.1.5: female 60 years, COPD\u003c/p\u003e\n\u003cp\u003eThere was a degree of acceptance of this perceived need or obligation to travel. But others expressed frustration that appropriate services were not available locally even when their needs were not urgent or life-threatening.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;If I had to go for check-up here. There\u0026apos;s nothing here, I don\u0026rsquo;t usually have stomach-ache and fever. The problem is this joint pain or this eye problem.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.3.1: male 75 years, CVA\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e3.c One direction referral process: no returns\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMany participants reminisced about their diagnostic journey starting at the local community hospital. Timing varied from soon to delayed, but eventually, participants with more complex conditions were frequently referred to higher centres outside the district. This was often at times of crisis when the participants were acutely and seriously unwell. This referral experience created a lasting impression that local health care services are inadequate or incapable of addressing their needs\u0026mdash;often described as \u0026ldquo;doors being closed.\u0026rdquo;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eWhen I was ill initially, I was taken to the local hospital, they referred me on as they couldn\u0026rsquo;t treat me there. After reaching Kathmandu, it took many days to be back in my right senses.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.3.5: male 76 years, paralysis\u003c/p\u003e\n\u003cp\u003eThere were no reports of referrals back to the local hospital to enable individuals to get treatment closer to their homes and communities. Going back to a local hospital for follow up almost seemed incomprehensible to participants.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;In (the local) hospital they only give pain relief medicine. What will that do? It had to be taken regularly. Pain can be tolerated. What to do? It is very far for ill people like me.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eC.4.1: male 46 years, cancer\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;As a result, participants frequently bypassed nearby health posts and hospitals, opting instead to travel directly to tertiary centers for all health care encounters related to their main diagnosis. Many expressed that they felt compelled to return to the same tertiary hospitals, regardless of the physical, financial, and emotional burdens involved.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I haven\u0026rsquo;t taken him to the health post. We have to take him to Kathmandu or Chitwan hospital. We don\u0026rsquo;t have the facilities here\u0026hellip; the services he needs are not available in small hospitals so we have to take him to a big hospital and this is very expensive.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;Caregiver of C.1.1: male 58 years, CVA\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e3.d Costs and choices\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParticipants shared that repeated follow-up visits, long-distance travel, diagnostic tests, and medication at the tertiary out of district hospitals incurred substantial direct and indirect costs. Many reported that such financial strain led them to discontinue their planned follow-up care, resigning themselves to live with suffering due to the unsustainable cost of care.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eWe didn\u0026apos;t have such capacity to bear [the costs]... I had two chemotherapies. One chemotherapy cost around 45-50 thousand rupees (240-270GBP) but after the two we didn\u0026rsquo;t have any more money. [I learned that] there should be 12 rounds of chemo. Later, I heard I must continue it even more times in the future as well. I then left it.\u003c/em\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eC.4.1: male 46 years, cancer\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe availability of health insurance services did not make everything straightforward. Those in Besisahar and Chaujahari (cases two and four) were able to access health insurance services in the community hospitals in their municipalities. However, in Rainas and Sundarbazaar (cases one and three), although many were registered with health insurance, participants needed to travel to the community hospital in Besisahar \u0026ndash; more than one hour away. This proved too much of a barrier for some.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;We have an insurance card but it\u0026rsquo;s difficult to take him (to Lamjung Hospital, Besisahar from Rainas)\u0026hellip; he becomes unconscious immediately if his head hurts\u0026hellip; \u0026nbsp; taking the bus is a risk as the roads are bumpy and if his head touches or hits something, he will be unconscious. Now I don\u0026apos;t have money to take him in the ambulance.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eCaregiver of C.1.1: male 58 years, CVA\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMulti-case assertions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eBringing the results together through analysis and triangulation of qualitative and quantitative data enabled us to reconsider the original propositions. Through the synthesis of data and revisiting literature the research team found consensus to develop six multi-case assertions [10]. These, listed in Box 2, summarise the findings and provide an overview of experience of illness and health seeking behaviour for PWPCNs in rural Nepal.\u0026nbsp;\u003c/p\u003e\n\u003ctable style=\"width: 100%;\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 100.0000%;\"\u003e\n \u003col\u003e\n \u003cli\u003eAccess to healthcare is affected by: distance to health facility, transportation, cost/family resources, location of health facility providing health insurance services\u003c/li\u003e\n \u003cli\u003eHealth beliefs like \u0026ldquo;better care is found in city hospitals\u0026rdquo;, reinforced by previous experience and understanding, influence health seeking behavior\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eA complex interaction of 1 and 2 frames health seeking behavior\u003c/li\u003e\n \u003cli\u003eMany rural Nepalis with life limiting conditions have high levels of serious health related suffering and unmet holistic palliative needs\u003c/li\u003e\n \u003cli\u003eNepalis with palliative care needs experience concerns over high social, psychological; and financial burden for their family, although this may be expressed less often in older people.\u003c/li\u003e\n \u003cli\u003eComplex interaction of 4 and 5 leads to patients feeling helpless, hopeless or resigned.\u003c/li\u003e\n \u003c/ol\u003e\u003cbr\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eBox 2: Six final multi-case assertions\u003c/p\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003e This is the first study using case based mixed methods to explore the experiences of people with palliative care needs in rural Nepal. High levels of physical, psychological and social needs were identified, with no-one in the study knowingly receiving palliative care services.\u003c/p\u003e \u003cp\u003ePeoples\u0026rsquo; unmet needs and the burden on them and their carers led to a sense of helplessness and hopelessness. Younger patients were more likely to have a specific diagnosis of a serious life-limiting illness [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e] and often they expressed frustration at not having the financial resources to complete what they often saw as curative treatment, particularly as this would mean travelling far from home and incurring high indirect cost in addition to direct health costs particularly for treatment and transportation. Older people often had no specific diagnosis and had not sought health care. For them there was often a sense of resignation that their condition was a result of old age, and they should expect no difference. Some of them might have sought traditional remedies, but these were not openly spoken about.\u003c/p\u003e \u003cp\u003eDespite health services in local health posts being available, many people did not attend these as they were perceived as being poorly equipped, did not provide necessary services and medication and were often difficult to travel to because of the hilly terrain and poor roads. Each municipality (case) studied had a community hospital. These were used particularly if they offered free services with government health insurance (two cases). The other two municipalities had not-for-profit local hospitals which provided low-cost healthcare, but which needed to be paid for out of pocket. For people in these municipalities, government insurance hospital services meant travelling to another municipality which required a long journey which was burdensome and had relatively expensive transport costs. In these municipalities people were more likely to go directly to higher-centres, which were paradoxically easier to reach than the local hospital providing \u0026lsquo;free\u0026rsquo; care on health insurance.\u003c/p\u003e \u003cp\u003eAnother factor leading to avoiding local hospitals was previous experience where people had been referred on to a higher centre. The findings suggest that, in these situations, there was a belief that the local hospital was unable to manage the ongoing chronic illness, so people would continue to travel long distances to city units or not access health care at all. These findings illustrate the challenge of \u0026lsquo;primary health care bypassing\u0026rsquo;, a well described phenomenon in low-middle income countries which occurs due to due to costs, quality issues and perceived lack of services at the local level [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eNepal is struggling with the dual challenge of increasing chronic disease prevalence as the population ages, and its ongoing communicable disease burden [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e]. There is a general lack of high quality NCD management available particularly at the primary care level [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e] and in rural areas [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Health care services are often poorly coordinated, with maldistribution of staff, and challenges with finance and procurement, compounded by limited monitoring and surveillance of service [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. This may be one reason why participants in this study perceive that they are unable to access the health care they need in their local health facilities, whether or not lack of availability is indeed the case. Parallels emerged between access to more advanced therapies and perceived competence or specialism of health care providers [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e] \u0026lsquo;Local for simple, further away for more complex.\u0026rsquo;\u003c/p\u003e \u003cp\u003eOut of pocket expenditure is high particularly for people with chronic NCDs with 10% of the population in Nepal reported to experience catastrophic levels of expenditure [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. This is continuing despite the introduction of the government health insurance system, which generally has a poor uptake, is fragmented and under-resourced [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. Direct and indirect costs remain high even with health insurance, particularly for people who do not have convenient local access to health insurance services [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. There is a strong evidence base for how health expenditure and poverty are self-reinforcing, sometimes leading over generations to a poverty trap, especially visible at end of life [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. This is consistent with this study\u0026rsquo;s findings, in which familial land and animals needed to be sold to fund necessary treatments. In addition to making things financially harder for the next generation, it also creates multi-generational feelings of guilt and psychological harm.\u003c/p\u003e \u003cp\u003eIn Nepal older people frequently rely on their \u0026lsquo;senior persons allowance\u0026rsquo; to access health care [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. Those with good health self-awareness, who are physically active, are aware of free services or are enrolled in health insurance and those who have supportive family members more likely to access health care [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. This resonates with this study\u0026rsquo;s findings that old people with palliative care needs are often poor, less active and also often as a result of lack of health self-awareness, are less likely to access health care than younger people. In the previously reported house to house survey we reported that 34% of those over 75 years with palliative care needs had not had a diagnosis of a life limiting condition [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eFew studies in Nepal have specifically explored experiences of living with chronic illness. Kunwar et al. (2020) [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e] found 75% of people with chronic renal failure had depression and poor quality of life which was particularly so if they were from a low caste and had poor socio-economic status. People with diabetes particularly in rural areas were found to have substandard diabetes management often due to poor understanding of their condition, lack of social support and lack of time given by health care workers to their management [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Older people were particularly found to have poor quality of life when suffering from COPD and osteoarthritis, particularly those with poor mobility, low caste and low socioeconomic status [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. Similarly, the people with palliative care needs in this study were more likely to have high levels of physical, psychological and social suffering, particularly those who are poor, isolated and lacking family support.\u003c/p\u003e \u003cp\u003eNepal faces the same struggles as other low middle income countries (LMIC), with two reports comparing chronic illness and health systems in Nepal with Peru and Mozambique [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e]. Chronic illness was reported to have a disruptive effect on suffers\u0026rsquo; lives and on their families and their roles in all three settings [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e]. Ambitious policies for chronic disease management existed in all three settings but they lacked technical, administrative and financial resources [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e]. Patients often received poor health information and clinical guideline adherence was often non-existent. Medication accessibility, even when affordable through public health policies were often not available at the primary care level [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e]. These issues along with high costs for transportation and lack of proper referral systems, illustrate that this case study\u0026rsquo;s findings are potentially relevant to other low-income contexts globally.\u003c/p\u003e \u003cp\u003eTo address Nepal\u0026rsquo;s challenges of achieving and maintaining universal health coverage, Adhikari et al. [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e] argue that current primary care services need to be further developed, health insurance provision enhanced, and existing networks of community health workers and health human resources strengthened. Nepal with its sparsely populated hilly rural districts but good internet infrastructure can benefit from high value, low cost technology such as telemedicine [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e], and established task shifting and sharing programmes [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e, \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e]. Furthermore building on the country\u0026rsquo;s success in improving health and reducing mortality through the vertical systems of the Millenium Development Goals could enable delivery of high quality universal health coverage [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e] including palliative care [\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThis multiple case study was undertaken as part of a needs assessment for the Sunita Project (2022\u0026ndash;2025), an initiative to develop a model of palliative care for rural areas, building on the principles set out in the National Palliative Care Strategy 2017 [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. The model aims to work with existing primary health care services in rural hospitals, health posts and with Female Community Health Volunteers (FCHV)[\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e]. Understanding the needs of people requiring palliative care and their health seeking behaviour has been applied to development of this model which has been evaluated. The findings from this developmental project will be published in subsequent papers. However, a short film from the Sunita Project, illustrating life with chronic life limiting illness in Nepal and possibilities for health care provision and community support has been developed and is available for viewing [\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e].\u003c/p\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eStrengths and Limitations\u003c/h2\u003e \u003cp\u003eUsing a mixed method multiple case study approach has enabled us to gain a deep insight into needs and health seeking behaviour of PWPCN in rural Nepal. It has allowed us to compare experiences across four cases with varying demography and with different services gaining a nuanced insight into the effects of availability and lack various resources. As this is the first such study in rural Nepal it has enabled the development and testing of a model of rural palliative care. The insights could be of use in other LMIC situations where little research evidence is available.\u003c/p\u003e \u003cp\u003eHowever, several limitations should be acknowledged. Distances to the research sites and difficult access meant that time for data collection was limited and at times the data lacked depth. Also, many parts of Nepal are even more remote and the experience of people living in these sites is likely to be even more challenging. Further work such as ethnographic studies where researchers can be embedded in the communities would be helpful to develop insights further.\u003c/p\u003e \u003c/div\u003e"},{"header":"CONCLUSIONS","content":"\u003cp\u003ePeople with palliative care needs living in rural Nepal suffer from a range of severe physical, psychological, social and spiritual problems. They rely on their families and to some extent neighbours for care, however high levels of suffering and challenges for them and their families remain. Access to formal health care is problematic with people either travelling large distances on difficult roads to receive care or doing without care at all. Accessing health care therefore leads to financial strain and although health insurance has to some extent mitigated for this, continuing direct and indirect costs are considerable. Therefore, most people were either not accessing health care services or only infrequently and many elderly despite need did not access health care at all. Perceived lack of availability of care in local hospitals led to them not being regularly used and the majority seek care from larger hospitals out of district. Chronic disease and palliative care service development in rural Nepal should focus on improving \u0026lsquo;within district\u0026rsquo; health services and communicating effectively with people so that they are aware where they can access appropriate and high-quality care.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eCOPD Chronic Obstructive Pulmonary Disease\u003c/p\u003e\n\u003cp\u003eCVA Cerebrovascular Accident\u003c/p\u003e\n\u003cp\u003eINF International Nepal Fellowship\u003c/p\u003e\n\u003cp\u003eNCDs Non-Communicable Diseases\u003c/p\u003e\n\u003cp\u003eNGO Non-Government Organization\u003c/p\u003e\n\u003cp\u003eNPOS Nepali version of the Palliative Care Outcome Scale\u003c/p\u003e\n\u003cp\u003ePWPCN People with Palliative Care Needs\u003c/p\u003e\n\u003cp\u003eSPICT-LIS Supportive and Palliative Care Indicators Tool for Low Income Settings\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study was conducted in accordance with the ethical principles of the Declaration of Helsinki. Ethical approval was obtained from Ethical Review Board of Nepal Health Research Council (Reference: 515/2022 P), Nepal to ensure compliance with ethical standards. Written informed consent was taken from all participants prior to data collection safeguarding their autonomy and right to withdraw at any point. Consent was taken from the legal guardian for children under 18 years. Confidentiality and anonymity were strictly maintained throughout the study to ensure research integrity.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eData will be made available upon reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare no competing interest.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis research is a part of the \u0026lsquo;Sunita Project,\u0026rsquo; a three-year UK Aid Match Funded rural palliative care development programme for Nepal delivered by INF Nepal and EMMS International.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDM conceptualized the study; NS, AP, SB, AT, APantha implemented the study and collected the data; AP, DM and DF analyzed the data; MJB, GF, FK and LG provided methodological support throughout the study process; AF, DM and DF wrote first draft of manuscript and all authors provided feedback and suggestions for editing of the manuscript. All authors reviewed and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors would like to express sincere gratitude to all participants who shared their time to participate in the study without whom this study would not have been possible. The authors would also like to thank those in the selected wards and municipalities of Lamjung and Rukum West who supported the successful completion of this research project.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eRaj Mishra S, Shrestha N, Gyawali B, Vaidya A, Schwarz Nyaya Health Nepal D, Aryal DFID K, et al. 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Available from: https://link.springer.com/article/10.1186/s12961-023-01033-2\u003c/li\u003e\n\u003cli\u003eRajan D, Jakab M, Schmets G, Azzopardi-Muscat N, Winkelmann J, Peiris D, et al. Political economy dichotomy in primary health care: bridging the gap between reality and necessity. Lancet Reg Heal - Eur [Internet]. 2024 Jul 1 [cited 2025 Dec 4];42. Available from: https://pubmed.ncbi.nlm.nih.gov/39070750/\u003c/li\u003e\n\u003cli\u003eKhatri RB, Khanal P, Thakuri DS, Ghimire P, Jakovljevic M. Navigating Nepal\u0026rsquo;s health financing system: A road to universal health coverage amid epidemiological and demographic transitions. PLoS One [Internet]. 2025 May 1 [cited 2025 Sep 25];20(5):e0324880. Available from: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0324880\u003c/li\u003e\n\u003cli\u003eSapkota T, Houkes I, health HBI, 2021 undefined. Vicious cycle of chronic disease and poverty: a qualitative study in present day Nepal. 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Available from: https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-025-23415-7\u003c/li\u003e\n\u003cli\u003eDhungana GP, Sapkota M, Bista B. Older people\u0026rsquo;s satisfaction with and utilisation patterns of the Old Age Allowance in Nepal. Wiley Online Libr Dhungana, M Sapkota, B BistaAustralasian J ageing, 2020\u0026bull;Wiley Online Libr [Internet]. 2020 Jun 1 [cited 2025 Sep 25];39(2):e178\u0026ndash;84. Available from: https://onlinelibrary.wiley.com/doi/abs/10.1111/ajag.12729\u003c/li\u003e\n\u003cli\u003ePoudel S, Parajuli A, Duwadi N, Bhatta BK, Paudel S, Khatri D, et al. Social health insurance, family support, and chronic diseases as determinants of health service utilization among senior citizens in rural Nepal. SpringerS Poudel, A Parajuli, N Duwadi, BK Bhatta, S Paudel, D Khatri, DP Paneru, YP SharmaBMC Public Heal 2025\u0026bull;Springer [Internet]. 2025 Dec 1 [cited 2025 Sep 25];25(1). 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Available from: https://jgpemn.org.np/jgpemn/index.php/jgpemn/article/view/54\u003c/li\u003e\n\u003cli\u003eDumka N, Gurung A, Hannah E, Goel S, Kotwal A. Understanding key factors for strengthening Nepal\u0026rsquo;s healthcare needs: health systems perspectives. joghr.orgN Dumka, A Gurung, E Hannah, S Goel, A KotwalJournal Glob Heal Reports, 2024\u0026bull;joghr.org [Internet]. 2024 [cited 2025 Sep 25];8:2024. Available from: https://www.joghr.org/article/94931.pdf\u003c/li\u003e\n\u003cli\u003eBaral KP, Bista K, Lama C, Acharya PK, Vaidya P, Gongal RN. Public Health Approach to Developing Palliative Care. JNMA J Nepal Med Assoc [Internet]. 2022 Aug 1 [cited 2025 Dec 4];60(252):750\u0026ndash;2. Available from: https://pubmed.ncbi.nlm.nih.gov/36705226/\u003c/li\u003e\n\u003cli\u003eTikkanen RS, Closser S, Prince J, Chand P, Justice J. An anthropological history of Nepal\u0026rsquo;s Female Community Health Volunteer program: gender, policy, and social change. SpringerRS Tikkanen, S Closser, J Prince, P Chand, J JusticeInternational J equity Heal 2024\u0026bull;Springer [Internet]. 2024 Dec 1 [cited 2025 Sep 25];23(1):70. Available from: https://link.springer.com/article/10.1186/s12939-024-02177-5\u003c/li\u003e\n\u003cli\u003eSunita\u0026rsquo;s Story | 19 Feb 2025 | Day 2 - YouTube [Internet]. [cited 2025 Nov 13]. Available from: https://www.youtube.com/watch?v=znnGKWgqUh0\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-palliative-care","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pcar","sideBox":"Learn more about [BMC Palliative Care](http://bmcpalliatcare.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pcar/default.aspx","title":"BMC Palliative Care","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Palliative care, Primary palliative care, Health-seeking behaviour, Rural health, Nepal, Multiple case study","lastPublishedDoi":"10.21203/rs.3.rs-8610619/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8610619/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eNepal is experiencing increasing need for palliative care through the rising prevalence of non-communicable disease and an aging population. Most people live in rural areas where access to healthcare is limited. This study explores experiences of suffering and health seeking behaviour amongst people with palliative care needs (PWPCN) and their unpaid family caregivers in rural Nepal.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eA constructivist multiple case study design was employed across four rural municipalities (cases) in two districts. Cases included communities of varied ethnicity and human development indices served by a community hospital and village health posts. A house-to-house survey using the Supportive and Palliative Care Indicators Tool for Low Income Settings (SPICT-LIS) identified PWPCN. Following completion of a structured questionnaire, a purposive sample of PWPCN was constructed (unit of analysis). They, their carers and key informants completed semi structured interviews. Quantitative data were analysed using descriptive statistics and qualitative data were analysed thematically both within and across case.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eAmong 587 households surveyed, 58 PWPCN were identified. 20 units of analysis were formed with interviews from 17 PWPCN and 17 caregivers and 16 key informants. None of the PWPCN had access to palliative care services. Three themes emerged: (1) Everyone suffers: reflecting high levels of physical, emotional, spiritual and social pain. (2) Paying for healthcare: high out-of-pocket expenditure, debt, and financial vulnerability mitigated partially for some by health insurance. (3) Decision-making - no right answer: exposed difficulties choosing between limited local services and distant, costly tertiary care. Decisions were affected by distance to and location of health facility (particularly those offering health insurance), transportation, cost/family resources, and a strong belief that \u0026ldquo;better care is found in the city.\u0026rdquo; Bypassing nearby facilities for distant tertiary hospitals was common. High level of suffering and unmet need led to a feeling of lack of control. Older people particularly did not access health care because of cost and were resigned to their fate.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003ePWPCN in rural Nepal endure substantial suffering through unmet holistic needs and limited access to appropriate care. Financial hardship, geographical barriers, and perceived low-quality local services drive people toward distant facilities thus increasing costs.\u003c/p\u003e","manuscriptTitle":"Challenges and suffering of people with advanced illness in rural Nepal: A mixed method multiple case study in four municipalities","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-01-29 16:25:48","doi":"10.21203/rs.3.rs-8610619/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-02-13T07:10:49+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-02-12T22:36:13+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-02-01T10:04:38+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"184200661906418870963904753130371296117","date":"2026-01-29T02:48:56+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"224614654325692491630035299000678825695","date":"2026-01-29T02:33:10+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"328206502829516224755334676448856700352","date":"2026-01-29T02:22:04+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"282058362633457995638846457387204457230","date":"2026-01-28T21:44:03+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"237572302882783461693019964690701255575","date":"2026-01-27T08:58:53+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"99135257342407699058517535809317744592","date":"2026-01-27T01:08:35+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-01-26T20:19:33+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-01-26T19:19:16+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2026-01-20T16:38:06+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-01-19T22:06:29+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Palliative Care","date":"2026-01-19T22:01:09+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-palliative-care","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pcar","sideBox":"Learn more about [BMC Palliative Care](http://bmcpalliatcare.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pcar/default.aspx","title":"BMC Palliative Care","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"e352b1fd-189f-4a05-92d0-6ad27244d41c","owner":[],"postedDate":"January 29th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2026-03-16T16:01:33+00:00","versionOfRecord":{"articleIdentity":"rs-8610619","link":"https://doi.org/10.1186/s12904-026-02055-7","journal":{"identity":"bmc-palliative-care","isVorOnly":false,"title":"BMC Palliative Care"},"publishedOn":"2026-03-14 15:58:15","publishedOnDateReadable":"March 14th, 2026"},"versionCreatedAt":"2026-01-29 16:25:48","video":"","vorDoi":"10.1186/s12904-026-02055-7","vorDoiUrl":"https://doi.org/10.1186/s12904-026-02055-7","workflowStages":[]},"version":"v1","identity":"rs-8610619","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8610619","identity":"rs-8610619","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}