Systematic review on coping strategies used by palliative care patients in South Asia

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The diagnosis of a life-limiting condition is often associated with psychosocial stressors, including changes in social relations, financial constraints, limited physical functioning and anxiety about the future and death. Some of the coping strategies that patients employ to address these stressors include support from family members, increased religiosity, and acceptance of their condition. Aim To explore how palliative care patients in South Asia cope with the various psychosocial stressors experienced during their ailment. Design and setting This is a systematic review of qualitative studies identifying and exploring coping among palliative care patients within community settings in South Asia. Method Searches of four electronic databases from inception to May 2022 were carried out. The extracted data included participant demographics, study characteristics and coping strategies employed. Thematic synthesis was performed. This qualitative systematic review was conducted and reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. The Critical Appraisal Skills Programme (CASP) checklist was used to evaluate the quality of the included articles. Results Six studies were included in the systematic review. The results showed that palliative care patients often experience loss of independence, financial worries and feelings of loneliness during their illness. The main coping strategies employed included social support from family, faith, and acceptance of their condition. Conclusion This systematic review provides a better understanding of various stressors and coping strategies in the context of palliative care in South Asia. This highlights the need for further research to be carried out in this area to better understand patients’ experiences and help develop policies and guidelines. The patient's family and their continuous support are identified as the predominant coping strategies in the context of South Asia. Family members seem to play a vital role in the provision of community or home-based palliative care. They not only provide personal, emotional but also monetary support needed in the terminal phase of life-limiting illness. Palliative care End of life Qualitative Coping South Asia Figures Figure 1 Figure 2 INTRODUCTION According to the WHO, palliative care is an approach that “improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual” ( 1 ). There are an estimated 40 million people in need of palliative care annually, 78% of whom live in low- and middle-income countries, including South Asia ( 1 ). The region of South Asia includes Afghanistan, Bangladesh, Bhutan, India, Maldives, Nepal, Pakistan, and Sri Lanka, which have collective populations of almost 1.9 billion ( 2 ). The incidence of life-limiting illnesses, including incurable cancer, HIV, end-stage heart failure, and renal and respiratory diseases, is increasing in this region, which has created an increasing need for palliative care ( 3 ). Research suggests that from the time of diagnosis of a terminal illness, palliative care patients may experience a variety of emotional, social, and existential concerns due to the nature of their disease, treatment options, and prognosis. These may include concerns relating to important decisions about treatment, changes in social relations, fears about the future and death, dependence on others and reduced physical functioning ( 4 ). To manage psychosocial stress, patients often employ coping strategies, which may develop over time and become more or less efficacious in improving their well-being ( 5 ). Coping is defined as “the set of cognitive and behavioural strategies developed by individuals to face internal and/or external demands of the relationship between the individuals and the environment” ( 6 ). It was found that various forms of coping used by patients may also be influenced by their environment and resources ( 4 ). Researchers have categorized coping strategies into several domains, including problem-focused (efforts focused on modification or resolution of the stressor), emotion-focused (efforts aimed at reduction or regulation of the distress from the stressor), and meaning-focused (efforts in maintaining positive well-being), among others. Another common concept found in the literature relates to whether coping methods are active or approach-oriented, aimed at managing the stressor directly, or disengagement, in which individuals tend to avoid or withdraw from dealing with the stressor ( 4 ). Palliative care is an emerging discipline with increasing coverage in South Asia ( 3 ). This has led to health care professionals being more cognizant of patients’ and their families’ challenges ( 7 ). This systematic review aimed to understand how adult palliative care patients in South Asia cope with psychosocial stress. METHOD This qualitative systematic review was conducted and reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines ( 8 ). A qualitative systematic review best suits this topic because it can synthesize the available data in a transparent and reproducible way ( 9 ). A focus on qualitative research facilitates the gathering and analysis of detailed data on experiences, allowing the generation of new understandings ( 10 ). Search Methods The following four databases were searched from inception to May 2022: Medline, Embase, PsycINFO, and PubMed. Searches comprised database subject headings and text words combining terms for ‘South Asian’ and ‘palliative care’ or ‘end of life care’ and ‘coping’ with the Boolean operators OR and AND (see appendix 1 for the search strategy). Additionally, reference checking and citation tracking of the included studies were also performed. Eligibility criteria The inclusion and exclusion criteria are detailed in following table (Table 1 ). Table 1 Inclusion and exclusion criteria Inclusion criteria Exclusion criteria South Asian’ adult population (people of India, Pakistan, Bangladesh, Afghanistan, Sri Lanka, Maldives, Nepal, Bhutan) on palliative care Full text unavailable Studies that describe stressors and experiences Studies involving children (less than 18 years of age) Coping among palliative care patients Specifically focussing only on carer’s experience Primary care or any community settings Physician’s experiences Qualitative studies or mixed-methods studies with a qualitative element. Quantitative studies, conference abstracts, reviews or editorials Studies in English language Studies in languages other than English Study screening and selection. The eligibility criteria were applied in relation to screening titles and abstracts, and the reasons for excluding articles were recorded. PRISMA flowchart The PRISMA flowchart ( 11 ) outlining the number of articles identified, duplicates, rejected against title or abstract or rejected against eligibility criteria and articles accepted is noted below (Fig. 1 ): Data extraction and quality assessment Data were extracted from the selected studies using a data extraction form. Demographic data included the aim and design of the study, methods of data collection and analysis, participants’ socioeconomic information, setting, number of participants and experiences. Data for synthesis included the author's descriptions of findings, including quotes from the participants where available. The quality of all included studies was assessed with the Critical Appraisal Skills Programme (CASP) checklist. Thematic synthesis Thematic synthesis was performed according to Thomas and Harden ( 12 ). This is a method for the identification, analysis, and reporting of common patterns (themes) in a secondary dataset ( 13 ). It can be valuable in allowing inferences to be drawn based on common themes in the studies included ( 9 ). Thematic synthesis is inspired by thematic analysis, an approach widely used to comprehend experiences, perceptions, or behaviours across a primary dataset ( 14 ). In this review, the deductive approach, which uses a preexisting framework or theory for identifying themes of interest, was utilized ( 13 ). RESULTS Study characteristics The search identified 6051 unique articles, six of which were included in the systematic review. The included studies were from India (n = 4) and Bangladesh (n = 2). The articles from India represented people from different parts of the country. One of the articles from Bangladesh included people from various areas of the country, whereas the other included patients from an urban slum. No relevant studies were identified from other South Asian regions. The study characteristics are included below (Table 2 ): Table 2 Study Characteristics Authors/country Title Aim Design Settings Akter et al., 2022 Bangladesh Solidarity and suffering: enrolled terminal patients’ and their caregiver’s experiences of the community-based palliative care programme in an urban slum of Bangladesh This study explores the experiences of palliative patients and their primary caregivers enrolled in a palliative care project Qualitative study with ethnographic approach Palliative care patients and their primary caregivers enrolled in the community-based palliative care project Doherty et al., 2019 Bangladesh The Psychosocial and Spiritual Experiences of Patients with Advanced Incurable Illness in Bangladesh: A Cross-Sectional Observational Study This study aims to better understand the psychosocial and spiritual needs and supports of patients with advanced, incurable illness in Bangladesh Cross-Sectional Observational Palliative care Elsner et al., 2020 India Psychosocial and spiritual problems of terminally ill patients in Kerala, India To investigate psychosocial and spiritual problems of terminally ill patients in Kerala, India Semistructured qualitative interviews Palliative Sciences Palliative Care Clinic in Trivandrum, Kerala, India and in patients’ homes in the surrounding area Kandasmay et al., 2011 India Spirituality, distress, depression, anxiety, and quality of life in patients with advanced cancer To study the influence of spiritual wellbeing on symptoms of distress, depression, and other dimensions of quality of life in advanced cancer patients receiving palliative care Descriptive and cross-sectional Inpatients in a hospice and palliative care centre Garg et al.,2018 India . Coping styles and life satisfaction in palliative care. This study attempts to identify effective coping strategies which lead to life satisfaction, among those afflicted with terminal cancer Observational, cross-sectional Terminally ill cancer patients undergoing palliative care Mishra et al., 2010 India Psychosocial concerns in patients with advanced cancer: An observational study at regional cancer centre, India To identify the prevalence of psychosocial concerns in the patients with advanced cancer admitted to our cancer centre and the need to address these concerns Observational Patients with advanced cancer admitted to the Pain and Palliative Care Unit in a regional centre in New Delhi Quality appraisal The quality appraisal of the studies according to the CASP criteria is outlined collectively below (Fig. 2). This instrument incorporates 10 questions from the CASP checklist for qualitative data questions answered as yes (✓), no (×), or cannot tell (?). FINDINGS Our thematic synthesis identified six themes related to coping in palliative care contexts. Three related to the challenges to be addressed and three related to coping styles (Table 3 ). Table 3 Themes Challenges Coping styles Theme 1: Loss of independence Theme 4: ‘Finding strength in....’ Theme 2: Debt Theme 5: ‘I pray’ Theme 3: ‘There is no one to take care of me’ Theme 6: Wish for death Theme 1: Loss of independence Many palliative care patients are bedbound and reliant on their family members for their daily activities as well as physical, emotional, and financial support. This often resulted in a feeling of 'guilt', as they considered themselves an enormous 'burden' on their families. The need for family medical and nonmedical support, including continued treatment costs, created feelings of 'frustration' and 'helplessness' among these patients ( 15 ). In one study ( 16 ), a participant described: All these days, I have lived an active, independent life. I could earn my livelihood. Now, I'm totally incapacitated; I have to depend on others for everything. This situation was found to be more challenging for male patients who were previously breadwinners of the family and cannot seem to have provided the same level of support they were used to in the past, which also resulted in a loss of social status within the family system ( 15 ). One participant stated: ''I feel very helpless. My wife is also sick, yet I must depend on her” (Patient_ Male_55–60 years old) ( 15 ). Theme 2: Debt During illness, many patients often experience loss of income due to the severity of their disease or physical impairment. The ongoing cost of treatment and livelihood may result in the depletion of personal savings and an increase in debt ( 16 ). Many patients had to discontinue hospital-based care due to a lack of affordability. One female participant described: ''I used to sell bread, I did very well in the business. I earned a lot of money, but now my business is over, and the money is finished”. (Patient_Female_60–65 years old) ( 15 ). Due to their illness and loss of employment, some patients are also not able to afford accommodations or may experience poor nutrition. In addition, worries regarding their children's future, such as education and marriage, due to a lack of resources and increasing debts are often reported among patients. One of the participants expressed the following: "I have debts of Rs 50,000 (£525) due to my daughter's marriage. Before my death, she has to get married, so I arranged a marriage for her; I borrowed money from a family member.'' ( 16 ) Theme 3: ‘There is no one to take care of me.’ Most patients considered themselves socially isolated and lonely, as they had to stay mostly at home due to their illness. A reduced ability to meet friends and family members and not being able to play an active role in community activities made them feel socially secluded. The perceived lack of care and concern from family and friends and the feeling of abandonment during their illness also contributed to their loneliness ( 15 ). The male patients often felt lonely when their spouse left the house for work, as they felt there was no member to look after them. One male patient who lost his wife a few years ago and now lived with his son’s family felt lonely. He said, “There is no one to take care of me. I sit in a corner all day long; I bring my medicine and clothes by myself. There is no one even to cool my head with water if needed” (male patient 60–70 years old) ( 15 ). Coping Theme 1: ‘Finding strength in....’ Many people were cared for by their family members, and they were considered the main source of support during this difficult time. In the majority of cases, family members look after the patient physically and emotionally throughout the various stages of the disease ( 15 ). Most of the patients reported that most of the support they received during disease treatment later came from their family members. Participants often associated their family members as a source of psychological and spiritual support. Talking with their family was the most common activity that participants reported helping them cope with unhappiness. One study described the spouse as the primary caregiver, followed by the children and parents. The synthesis suggested that living with an extended family was associated with being more hopeful and optimistic than living with a spouse only ( 17 ). Some participants employed active coping strategies such as spending significant time in the community. Male patients who were not bedridden regularly walked to the shops or religious places or chatted with neighbours. Patients often have friendly relationships with their neighbours and spend their leisure time interacting with friends and neighbours ( 15 ). Discussions with healthcare workers also helped participants in gathering courage and finding the strength to face their disease. Confiding their fears to the counsellor also helped to alleviate their worries. Theme 2: ‘I pray’ A strong theme that emerged among South Asian palliative care patients was coping through their faith in God. Many patients were spiritually connected with their faith and religion and had a firm belief that God would help them. Their faith helped them and eased their fight against the disease. Faith also reduced their anxiety and fear. Practically, acts of worship, such as praying, were reported to diminish suffering and pain. They were carried out at every stage of illness, fostering the hope of healing, along with allowing people to relax and become distracted. The patients increasingly participated in prayers and religious rituals at their homes and in communities. One participant described: "After going to the prayer, I am getting relief, and I also get good sleep. When I have pain, I pray to God, and after the prayer, I do not know where the pain is gone" ( 16 ). In one study, all the participants interviewed believed in God and seemed to have found peace by practising religion ( 15 ). They believed they would be cured if God (Allah) wished them to be. This belief gave them comfort and alleviated their suffering. After diagnosis of the terminal illness, participants often reported a feeling of being closer to God. Although many were not able to perform religious rituals due to the physical symptoms associated with their disease, they still acknowledged that these rituals were a vital part of their worship. One patient said, ''Sufferings come from Allah, and only he can relieve them. Therefore, I do pray all the time for my recovery” (Patient_Female_75–80 years old) ( 15 ). Many patients often seem to accept the disease or death in the near future as the fate of God's plan, and these patients started to prepare themselves for death with dignity. Theme 3: Wish for death It was found that there was significant anxiety among people with palliative care needs regarding the fear of pain, suffering and death. In one study, almost one-third of participants wished for death to alleviate their suffering ( 18 ). One participant stated: ''Why doesn’t Allah take me to Him, so I do not suffer anymore?'' (Patient_ Male_55–60 years old) ( 15 ) In another study, several participants reported their wish to die. Some patients were waiting for their death, accepting it as the will of God; some had already attempted suicide, while others would have liked to commit suicide but were unable to do it. One participant described: ''I hesitate to take my own life thinking of the complications it would create for my family" ( 16 ). DISCUSSION This systematic review offers a new understanding of coping in people in South Asia with life-limiting ailments by combining several studies. This systematic review highlighted that life-limiting conditions are often associated with various types of physical, emotional, and financial suffering. Our findings echoed the literature that participants are more likely to think they have become a burden on their families because of their loss of income and inability to look after themselves ( 21 ). Other concerns for palliative care patients include physical symptoms and adverse effects of treatment, loss of functioning, and constant feelings of uncertainty ( 21 ) ( 22 ). This often leads to increased suffering and loss of self-esteem ( 19 ). Qualitative studies have facilitated the understanding of the experiences of patients coping with terminal illness from the time of diagnosis to the time of the patient’s end of life. Multiple factors, such as social isolation, dependency on family members and financial hardships, seem to impact coping ( 15 ). The framework of coping developed by Lazarus and Folkman (1984) aims to describe coping as “efforts to deal with adaptational demands and emotions”. They believed that the skills needed by people to accommodate and cope with stressful situations are often learned through experience ( 20 ). In response to social and psychological stressors, patients in the initial stages often rely on their current coping mechanisms to manage distress ( 23 ). These strategies further evolve as patients find ways of living with the disease. These often include a combination of seeking emotional support, actively coping with the situation, and turning to religion for solace ( 24 ) ( 27 ). The palliative care experience in some patients can stimulate a broader sense of meaning and emotional and personal growth towards the end of life ( 25 ) ( 26 ). Coping in palliative care is a dynamic process across the disease trajectory and is often affected by patient context ( 28 ). Many of these individuals do not strictly adhere to just one coping strategy; instead, they employ a range of methods that might evolve over time, influenced by the severity of their symptoms. This adaptability could play a crucial role in cultivating resilience against the challenges posed by their life-threatening illness ( 31 ). Studies investigating coping mechanisms in palliative care patients have echoed similar results, with acceptance emerging as the most prevalent coping strategy. This is closely followed by seeking emotional support, engaging in active coping strategies, and turning to religion for support ( 30 )( 31 ). Few palliative care patients resort to unhealthy negative coping mechanisms, such as behavioural disengagement (avoidance), denial, and self-blame. Among these, the two most frequently reported maladaptive coping strategies are self-distraction and venting. Some studies indicate that these strategies were associated with higher levels of emotional distress. Particularly, the adoption of denial and self-blame was associated with decreased quality of life and elevated ratings of both pain and depression ( 31 )( 32 )( 33 ). Strengths and limitations To the authors’ knowledge, this is the first systematic review to explore how people on palliative care cope in the region of South Asia. This review highlights a gap between the need of this population for psychosocial support and services provided by healthcare professionals. This review has the potential to lead to improved service provision in this population group through early recognition and management of psychosocial stressors. Health care workers involved in palliative care need to be trained to identify those patients who would be referred to a specialist and distinguish them from those who could benefit from counselling and support from their regular caregivers ( 18 ). A limitation of this systematic review is that the findings may not be applicable to all patients in South Asia because they represent a diverse group residing in diverse geographical areas with different dialects and religious beliefs. The included studies did not sufficiently address the negative coping strategies that may be employed by patients to cope with their disease. These may include resorting to substance abuse, denial, venting and self-blame ( 29 ). A deductive approach was used in this systematic review to analyse data from primary studies. One of the limitations of this approach is that the reviewer may be attached to predefined themes, and data that do not fit in the framework may be lost. Conclusion The acknowledgement of the psychosocial needs and coping strategies of terminally ill patients is highly important for provision of effective palliative care. It's recommended to incorporate screening tools designed to detect maladaptive or avoidant coping strategies, followed by confidential clinical interviews conducted by primary care physicians, psychologists, or psychiatrists. Recognizing patients who resort to unhealthy or avoidant coping methods is crucial for guiding appropriate psychological support and promoting the adoption of alternative, healthier coping strategies to manage stress. Declarations Ethics approval As this review included only already published data, no specific ethical approval was required. Human Ethics and Consent to participate. Not applicable. Availability of data The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request. 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Nipp RD, El-Jawahri A, Fishbein JN, Eusebio J, Stagl JM, Gallagher ER, Park ER, Jackson VA, Pirl WF, Greer JA, Temel JS. The relationship between coping strategies, quality of life, and mood in patients with incurable cancer. Cancer. 2016;122(13):2110–6. Additional Declarations No competing interests reported. Supplementary Files Appendix1.docx Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4480982","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":310034274,"identity":"4e700a0a-306c-4ab3-8b84-141bc7bc2195","order_by":0,"name":"Hina Ali","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA5klEQVRIiWNgGAWjYBACA2YQWSDBwABEDDwVDAYgvgRhLQYwLWeI0QInQcp424jQYs7Oe/DDDwMLBv7Z3YkP3s6zMzY4wHzwNg8eLZbNfMmSPUCHSdw5u9lw7rZkM4MDbMnW+LQYHOYxkOAB+eVG7jZp3m3MNgYHeMykCWgx/vkHqEX+Ru7237xz6oFa+L8R0gI0E6jFAGgLM2/DYaDDeNgIarGWAbrN8EbuZsk5x44bSx5mM7acg0/L+TPGN99U1MnJ3cjd+OFNTbVh3/Hmhzfe4NECA0guYSZC+SgYBaNgFIwC/AAAcrZEz39vqJoAAAAASUVORK5CYII=","orcid":"","institution":"Aga Khan University Hospital","correspondingAuthor":true,"prefix":"","firstName":"Hina","middleName":"","lastName":"Ali","suffix":""},{"id":310034275,"identity":"383fba12-adc0-4c8e-9f84-61ae02bad4f7","order_by":1,"name":"David Fearon","email":"","orcid":"","institution":"University of Edinburgh","correspondingAuthor":false,"prefix":"","firstName":"David","middleName":"","lastName":"Fearon","suffix":""},{"id":310034277,"identity":"0735938b-ff12-45aa-a4b7-24fdbef05c2d","order_by":2,"name":"Ismat Jabeen","email":"","orcid":"","institution":"Aga Khan University Hospital","correspondingAuthor":false,"prefix":"","firstName":"Ismat","middleName":"","lastName":"Jabeen","suffix":""}],"badges":[],"createdAt":"2024-05-26 17:38:25","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4480982/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4480982/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":58514689,"identity":"2aa8370a-7e99-4a86-a6ed-7eb6cdcbe8f7","added_by":"auto","created_at":"2024-06-17 16:36:56","extension":"jpeg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":474397,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003ePRISMA flow chart\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"floatimage1.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-4480982/v1/4f1a31a12feee186648ebf8a.jpeg"},{"id":58514690,"identity":"76634da5-eee7-4a45-b511-9948c3d16ec4","added_by":"auto","created_at":"2024-06-17 16:36:56","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":40675,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eQuality appraisal\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-4480982/v1/5bf407b8bc660a45eea7818b.png"},{"id":76178800,"identity":"86bd6156-1563-4d83-96a7-c8d8d42c2bd9","added_by":"auto","created_at":"2025-02-13 07:02:46","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1194686,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4480982/v1/dbe937f1-a864-4514-b0be-d8ef59b4b679.pdf"},{"id":58514688,"identity":"d4cea9f2-a234-4e04-a909-0281ba5edc3e","added_by":"auto","created_at":"2024-06-17 16:36:56","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":18208,"visible":true,"origin":"","legend":"","description":"","filename":"Appendix1.docx","url":"https://assets-eu.researchsquare.com/files/rs-4480982/v1/d3dd122e7e5048094c6d4890.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003eSystematic review on coping strategies used by palliative care patients in South Asia\u003c/p\u003e","fulltext":[{"header":"INTRODUCTION","content":"\u003cp\u003eAccording to the WHO, palliative care is an approach that \u0026ldquo;improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual\u0026rdquo; (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). There are an estimated 40\u0026nbsp;million people in need of palliative care annually, 78% of whom live in low- and middle-income countries, including South Asia (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe region of South Asia includes Afghanistan, Bangladesh, Bhutan, India, Maldives, Nepal, Pakistan, and Sri Lanka, which have collective populations of almost 1.9\u0026nbsp;billion (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). The incidence of life-limiting illnesses, including incurable cancer, HIV, end-stage heart failure, and renal and respiratory diseases, is increasing in this region, which has created an increasing need for palliative care (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eResearch suggests that from the time of diagnosis of a terminal illness, palliative care patients may experience a variety of emotional, social, and existential concerns due to the nature of their disease, treatment options, and prognosis. These may include concerns relating to important decisions about treatment, changes in social relations, fears about the future and death, dependence on others and reduced physical functioning (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eTo manage psychosocial stress, patients often employ coping strategies, which may develop over time and become more or less efficacious in improving their well-being (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Coping is defined as \u0026ldquo;the set of cognitive and behavioural strategies developed by individuals to face internal and/or external demands of the relationship between the individuals and the environment\u0026rdquo; (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). It was found that various forms of coping used by patients may also be influenced by their environment and resources (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eResearchers have categorized coping strategies into several domains, including problem-focused (efforts focused on modification or resolution of the stressor), emotion-focused (efforts aimed at reduction or regulation of the distress from the stressor), and meaning-focused (efforts in maintaining positive well-being), among others. Another common concept found in the literature relates to whether coping methods are active or approach-oriented, aimed at managing the stressor directly, or disengagement, in which individuals tend to avoid or withdraw from dealing with the stressor (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e).\u003c/p\u003e \u003cp\u003ePalliative care is an emerging discipline with increasing coverage in South Asia (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). This has led to health care professionals being more cognizant of patients\u0026rsquo; and their families\u0026rsquo; challenges (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). This systematic review aimed to understand how adult palliative care patients in South Asia cope with psychosocial stress.\u003c/p\u003e"},{"header":"METHOD","content":"\u003cp\u003eThis qualitative systematic review was conducted and reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eA qualitative systematic review best suits this topic because it can synthesize the available data in a transparent and reproducible way (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). A focus on qualitative research facilitates the gathering and analysis of detailed data on experiences, allowing the generation of new understandings (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e).\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eSearch Methods\u003c/h2\u003e \u003cp\u003eThe following four databases were searched from inception to May 2022: Medline, Embase, PsycINFO, and PubMed. Searches comprised database subject headings and text words combining terms for \u0026lsquo;South Asian\u0026rsquo; and \u0026lsquo;palliative care\u0026rsquo; or \u0026lsquo;end of life care\u0026rsquo; and \u0026lsquo;coping\u0026rsquo; with the Boolean operators OR and AND (see appendix 1 for the search strategy). Additionally, reference checking and citation tracking of the included studies were also performed.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eEligibility criteria\u003c/h2\u003e \u003cp\u003eThe inclusion and exclusion criteria are detailed in following table (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eInclusion and exclusion criteria\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInclusion criteria\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eExclusion criteria\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSouth Asian\u0026rsquo; adult population (people of India, Pakistan, Bangladesh, Afghanistan, Sri Lanka, Maldives, Nepal, Bhutan) on palliative care\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFull text unavailable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStudies that describe stressors and experiences\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eStudies involving children (less than 18 years of age)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCoping among palliative care patients\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSpecifically focussing only on carer\u0026rsquo;s experience\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePrimary care or any community settings\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePhysician\u0026rsquo;s experiences\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQualitative studies or mixed-methods studies with a qualitative element.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eQuantitative studies, conference abstracts, reviews or editorials\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStudies in English language\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eStudies in languages other than English\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cb\u003eStudy screening and selection.\u003c/b\u003e \u003c/p\u003e \u003cp\u003eThe eligibility criteria were applied in relation to screening titles and abstracts, and the reasons for excluding articles were recorded.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003ePRISMA flowchart\u003c/h2\u003e \u003cp\u003eThe PRISMA flowchart (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e) outlining the number of articles identified, duplicates, rejected against title or abstract or rejected against eligibility criteria and articles accepted is noted below (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e):\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eData extraction and quality assessment\u003c/h2\u003e \u003cp\u003eData were extracted from the selected studies using a data extraction form. Demographic data included the aim and design of the study, methods of data collection and analysis, participants\u0026rsquo; socioeconomic information, setting, number of participants and experiences. Data for synthesis included the author's descriptions of findings, including quotes from the participants where available. The quality of all included studies was assessed with the Critical Appraisal Skills Programme (CASP) checklist.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eThematic synthesis\u003c/h2\u003e \u003cp\u003eThematic synthesis was performed according to Thomas and Harden (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). This is a method for the identification, analysis, and reporting of common patterns (themes) in a secondary dataset (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). It can be valuable in allowing inferences to be drawn based on common themes in the studies included (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). Thematic synthesis is inspired by thematic analysis, an approach widely used to comprehend experiences, perceptions, or behaviours across a primary dataset (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). In this review, the deductive approach, which uses a preexisting framework or theory for identifying themes of interest, was utilized (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e"},{"header":"RESULTS","content":"\u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eStudy characteristics\u003c/h2\u003e \u003cp\u003eThe search identified 6051 unique articles, six of which were included in the systematic review. The included studies were from India (n\u0026thinsp;=\u0026thinsp;4) and Bangladesh (n\u0026thinsp;=\u0026thinsp;2). The articles from India represented people from different parts of the country. One of the articles from Bangladesh included people from various areas of the country, whereas the other included patients from an urban slum. No relevant studies were identified from other South Asian regions. The study characteristics are included below (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e):\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eStudy Characteristics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"5\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAuthors/country\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eTitle\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eAim\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eDesign\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSettings\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAkter et al., 2022\u003c/p\u003e \u003cp\u003eBangladesh\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSolidarity and suffering: enrolled terminal patients\u0026rsquo; and their caregiver\u0026rsquo;s experiences of the community-based palliative care programme in an urban slum of Bangladesh\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThis study explores the experiences of palliative patients and their primary caregivers enrolled in a palliative care project\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eQualitative study with ethnographic approach\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ePalliative care patients and their primary caregivers enrolled in the community-based palliative care project\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDoherty et al., 2019\u003c/p\u003e \u003cp\u003eBangladesh\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eThe Psychosocial and Spiritual Experiences of Patients with Advanced Incurable Illness in Bangladesh:\u003c/p\u003e \u003cp\u003eA Cross-Sectional Observational Study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThis study aims to better understand the psychosocial and spiritual needs and supports of patients with advanced, incurable illness in Bangladesh\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eCross-Sectional Observational\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ePalliative care\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eElsner et al., 2020\u003c/p\u003e \u003cp\u003eIndia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePsychosocial and spiritual problems of terminally ill patients in Kerala, India\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo investigate psychosocial and spiritual problems of terminally ill patients in Kerala, India\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSemistructured qualitative interviews\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ePalliative Sciences Palliative Care Clinic in Trivandrum, Kerala, India and in patients\u0026rsquo; homes in the surrounding area\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eKandasmay et al., 2011\u003c/p\u003e \u003cp\u003eIndia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSpirituality, distress, depression, anxiety, and quality of life in patients with advanced cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo study the influence of spiritual wellbeing on symptoms of distress, depression, and other dimensions of quality of life in advanced cancer patients receiving palliative care\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eDescriptive and cross-sectional\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eInpatients in a hospice and palliative care centre\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGarg et al.,2018\u003c/p\u003e \u003cp\u003eIndia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e. Coping styles and life satisfaction in palliative care.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThis study attempts to identify effective coping strategies which lead to life satisfaction, among those afflicted with terminal cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eObservational, cross-sectional\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eTerminally ill cancer patients undergoing palliative care\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMishra et al., 2010\u003c/p\u003e \u003cp\u003eIndia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePsychosocial concerns in patients with advanced cancer: An observational study at regional cancer centre, India\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTo identify the prevalence of psychosocial concerns in the patients with advanced cancer admitted to our cancer centre and the need to address these concerns\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eObservational\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ePatients with advanced cancer admitted to the Pain and Palliative Care Unit in a regional centre in New Delhi\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eQuality appraisal\u003c/h2\u003e \u003cp\u003eThe quality appraisal of the studies according to the CASP criteria is outlined collectively below (Fig.\u0026nbsp;2). This instrument incorporates 10 questions from the CASP checklist for qualitative data questions answered as yes (✓), no (\u0026times;), or cannot tell (?).\u003c/p\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eFINDINGS\u003c/h2\u003e \u003cp\u003eOur thematic synthesis identified six themes related to coping in palliative care contexts. Three related to the challenges to be addressed and three related to coping styles (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThemes\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eChallenges\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCoping styles\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTheme 1: Loss of independence\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eTheme 4: \u0026lsquo;Finding strength in....\u0026rsquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTheme 2: Debt\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eTheme 5: \u0026lsquo;I pray\u0026rsquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTheme 3: \u0026lsquo;There is no one to take care of me\u0026rsquo;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eTheme 6: Wish for death\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eTheme 1: Loss of independence\u003c/h2\u003e \u003cp\u003eMany palliative care patients are bedbound and reliant on their family members for their daily activities as well as physical, emotional, and financial support. This often resulted in a feeling of 'guilt', as they considered themselves an enormous 'burden' on their families. The need for family medical and nonmedical support, including continued treatment costs, created feelings of 'frustration' and 'helplessness' among these patients (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIn one study (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e), a participant described:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eAll these days, I have lived an active, independent life. I could earn my livelihood. Now, I'm totally incapacitated; I have to depend on others for everything.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThis situation was found to be more challenging for male patients who were previously breadwinners of the family and cannot seem to have provided the same level of support they were used to in the past, which also resulted in a loss of social status within the family system (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eOne participant stated:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e''I feel very helpless. My wife is also sick, yet I must depend on her\u0026rdquo; (Patient_ Male_55\u0026ndash;60 years old) (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eTheme 2: Debt\u003c/h2\u003e \u003cp\u003eDuring illness, many patients often experience loss of income due to the severity of their disease or physical impairment. The ongoing cost of treatment and livelihood may result in the depletion of personal savings and an increase in debt (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). Many patients had to discontinue hospital-based care due to a lack of affordability.\u003c/p\u003e \u003cp\u003eOne female participant described:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e''I used to sell bread, I did very well in the business. I earned a lot of money, but now my business is over, and the money is finished\u0026rdquo;. (Patient_Female_60\u0026ndash;65 years old) (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eDue to their illness and loss of employment, some patients are also not able to afford accommodations or may experience poor nutrition. In addition, worries regarding their children's future, such as education and marriage, due to a lack of resources and increasing debts are often reported among patients.\u003c/p\u003e \u003cp\u003eOne of the participants expressed the following:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"I have debts of Rs 50,000 (\u0026pound;525) due to my daughter's marriage. Before my death, she has to get married, so I arranged a marriage for her; I borrowed money from a family member.'' (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eTheme 3: \u0026lsquo;There is no one to take care of me.\u0026rsquo;\u003c/h2\u003e \u003cp\u003eMost patients considered themselves socially isolated and lonely, as they had to stay mostly at home due to their illness. A reduced ability to meet friends and family members and not being able to play an active role in community activities made them feel socially secluded. The perceived lack of care and concern from family and friends and the feeling of abandonment during their illness also contributed to their loneliness (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe male patients often felt lonely when their spouse left the house for work, as they felt there was no member to look after them. One male patient who lost his wife a few years ago and now lived with his son\u0026rsquo;s family felt lonely. He said,\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;There is no one to take care of me. I sit in a corner all day long; I bring my medicine and clothes by myself. There is no one even to cool my head with water if needed\u0026rdquo; (male patient 60\u0026ndash;70 years old) (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eCoping\u003c/h2\u003e \u003cdiv id=\"Sec16\" class=\"Section3\"\u003e \u003ch2\u003eTheme 1: \u0026lsquo;Finding strength in....\u0026rsquo;\u003c/h2\u003e \u003cp\u003eMany people were cared for by their family members, and they were considered the main source of support during this difficult time. In the majority of cases, family members look after the patient physically and emotionally throughout the various stages of the disease (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eMost of the patients reported that most of the support they received during disease treatment later came from their family members. Participants often associated their family members as a source of psychological and spiritual support. Talking with their family was the most common activity that participants reported helping them cope with unhappiness. One study described the spouse as the primary caregiver, followed by the children and parents. The synthesis suggested that living with an extended family was associated with being more hopeful and optimistic than living with a spouse only (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e Some participants employed active coping strategies such as spending significant time in the community. Male patients who were not bedridden regularly walked to the shops or religious places or chatted with neighbours. Patients often have friendly relationships with their neighbours and spend their leisure time interacting with friends and neighbours (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eDiscussions with healthcare workers also helped participants in gathering courage and finding the strength to face their disease. Confiding their fears to the counsellor also helped to alleviate their worries.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eTheme 2: \u0026lsquo;I pray\u0026rsquo;\u003c/h2\u003e \u003cp\u003eA strong theme that emerged among South Asian palliative care patients was coping through their faith in God. Many patients were spiritually connected with their faith and religion and had a firm belief that God would help them. Their faith helped them and eased their fight against the disease. Faith also reduced their anxiety and fear.\u003c/p\u003e \u003cp\u003ePractically, acts of worship, such as praying, were reported to diminish suffering and pain. They were carried out at every stage of illness, fostering the hope of healing, along with allowing people to relax and become distracted. The patients increasingly participated in prayers and religious rituals at their homes and in communities. One participant described:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"After going to the prayer, I am getting relief, and I also get good sleep. When I have pain, I pray to God, and after the prayer, I do not know where the pain is gone\" (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIn one study, all the participants interviewed believed in God and seemed to have found peace by practising religion (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). They believed they would be cured if God (Allah) wished them to be. This belief gave them comfort and alleviated their suffering.\u003c/p\u003e \u003cp\u003eAfter diagnosis of the terminal illness, participants often reported a feeling of being closer to God. Although many were not able to perform religious rituals due to the physical symptoms associated with their disease, they still acknowledged that these rituals were a vital part of their worship.\u003c/p\u003e \u003cp\u003eOne patient said,\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e''Sufferings come from Allah, and only he can relieve them. Therefore, I do pray all the time for my recovery\u0026rdquo; (Patient_Female_75\u0026ndash;80 years old) (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eMany patients often seem to accept the disease or death in the near future as the fate of God's plan, and these patients started to prepare themselves for death with dignity.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eTheme 3: Wish for death\u003c/h2\u003e \u003cp\u003eIt was found that there was significant anxiety among people with palliative care needs regarding the fear of pain, suffering and death. In one study, almost one-third of participants wished for death to alleviate their suffering (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eOne participant stated:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e''Why doesn\u0026rsquo;t Allah take me to Him, so I do not suffer anymore?''\u003c/p\u003e\u003cp\u003e(Patient_ Male_55\u0026ndash;60 years old) (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIn another study, several participants reported their wish to die. Some patients were waiting for their death, accepting it as the will of God; some had already attempted suicide, while others would have liked to commit suicide but were unable to do it.\u003c/p\u003e \u003cp\u003eOne participant described:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e''I hesitate to take my own life thinking of the complications it would create for my family\" (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eThis systematic review offers a new understanding of coping in people in South Asia with life-limiting ailments by combining several studies.\u003c/p\u003e \u003cp\u003eThis systematic review highlighted that life-limiting conditions are often associated with various types of physical, emotional, and financial suffering. Our findings echoed the literature that participants are more likely to think they have become a burden on their families because of their loss of income and inability to look after themselves (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). Other concerns for palliative care patients include physical symptoms and adverse effects of treatment, loss of functioning, and constant feelings of uncertainty (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e) (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). This often leads to increased suffering and loss of self-esteem (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eQualitative studies have facilitated the understanding of the experiences of patients coping with terminal illness from the time of diagnosis to the time of the patient\u0026rsquo;s end of life. Multiple factors, such as social isolation, dependency on family members and financial hardships, seem to impact coping (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe framework of coping developed by Lazarus and Folkman (1984) aims to describe coping as \u0026ldquo;efforts to deal with adaptational demands and emotions\u0026rdquo;. They believed that the skills needed by people to accommodate and cope with stressful situations are often learned through experience (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIn response to social and psychological stressors, patients in the initial stages often rely on their current coping mechanisms to manage distress (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). These strategies further evolve as patients find ways of living with the disease. These often include a combination of seeking emotional support, actively coping with the situation, and turning to religion for solace (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e) (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). The palliative care experience in some patients can stimulate a broader sense of meaning and emotional and personal growth towards the end of life (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e) (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eCoping in palliative care is a dynamic process across the disease trajectory and is often affected by patient context (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). Many of these individuals do not strictly adhere to just one coping strategy; instead, they employ a range of methods that might evolve over time, influenced by the severity of their symptoms. This adaptability could play a crucial role in cultivating resilience against the challenges posed by their life-threatening illness (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eStudies investigating coping mechanisms in palliative care patients have echoed similar results, with acceptance emerging as the most prevalent coping strategy. This is closely followed by seeking emotional support, engaging in active coping strategies, and turning to religion for support (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e)(\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eFew palliative care patients resort to unhealthy negative coping mechanisms, such as behavioural disengagement (avoidance), denial, and self-blame. Among these, the two most frequently reported maladaptive coping strategies are self-distraction and venting. Some studies indicate that these strategies were associated with higher levels of emotional distress. Particularly, the adoption of denial and self-blame was associated with decreased quality of life and elevated ratings of both pain and depression (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e)(\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e)(\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e).\u003c/p\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eStrengths and limitations\u003c/h2\u003e \u003cp\u003e To the authors\u0026rsquo; knowledge, this is the first systematic review to explore how people on palliative care cope in the region of South Asia. This review highlights a gap between the need of this population for psychosocial support and services provided by healthcare professionals. This review has the potential to lead to improved service provision in this population group through early recognition and management of psychosocial stressors. Health care workers involved in palliative care need to be trained to identify those patients who would be referred to a specialist and distinguish them from those who could benefit from counselling and support from their regular caregivers (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eA limitation of this systematic review is that the findings may not be applicable to all patients in South Asia because they represent a diverse group residing in diverse geographical areas with different dialects and religious beliefs.\u003c/p\u003e \u003cp\u003eThe included studies did not sufficiently address the negative coping strategies that may be employed by patients to cope with their disease. These may include resorting to substance abuse, denial, venting and self-blame (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eA deductive approach was used in this systematic review to analyse data from primary studies. One of the limitations of this approach is that the reviewer may be attached to predefined themes, and data that do not fit in the framework may be lost.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThe acknowledgement of the psychosocial needs and coping strategies of terminally ill patients is highly important for provision of effective palliative care. It's recommended to incorporate screening tools designed to detect maladaptive or avoidant coping strategies, followed by confidential clinical interviews conducted by primary care physicians, psychologists, or psychiatrists. Recognizing patients who resort to unhealthy or avoidant coping methods is crucial for guiding appropriate psychological support and promoting the adoption of alternative, healthier coping strategies to manage stress.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAs this review included only already published data, no specific ethical approval was required.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eHuman Ethics and Consent to participate.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used and/or analysed during the current study are available from the\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ecorresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNo funding was received.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eWorld Health Organization. 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Cancer. 2016;122(13):2110\u0026ndash;6.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Palliative care, End of life, Qualitative, Coping, South Asia","lastPublishedDoi":"10.21203/rs.3.rs-4480982/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4480982/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eThe number of people with life-limiting illnesses seems to be increasing in South Asia\u0026rsquo;s fast-growing population. The diagnosis of a life-limiting condition is often associated with psychosocial stressors, including changes in social relations, financial constraints, limited physical functioning and anxiety about the future and death. Some of the coping strategies that patients employ to address these stressors include support from family members, increased religiosity, and acceptance of their condition.\u003c/p\u003e\u003ch2\u003eAim\u003c/h2\u003e \u003cp\u003eTo explore how palliative care patients in South Asia cope with the various psychosocial stressors experienced during their ailment.\u003c/p\u003e\u003ch2\u003eDesign and setting\u003c/h2\u003e \u003cp\u003eThis is a systematic review of qualitative studies identifying and exploring coping among palliative care patients within community settings in South Asia.\u003c/p\u003e\u003ch2\u003eMethod\u003c/h2\u003e \u003cp\u003eSearches of four electronic databases from inception to May 2022 were carried out. The extracted data included participant demographics, study characteristics and coping strategies employed. Thematic synthesis was performed. This qualitative systematic review was conducted and reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. The Critical Appraisal Skills Programme (CASP) checklist was used to evaluate the quality of the included articles.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eSix studies were included in the systematic review. The results showed that palliative care patients often experience loss of independence, financial worries and feelings of loneliness during their illness. The main coping strategies employed included social support from family, faith, and acceptance of their condition.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eThis systematic review provides a better understanding of various stressors and coping strategies in the context of palliative care in South Asia. This highlights the need for further research to be carried out in this area to better understand patients\u0026rsquo; experiences and help develop policies and guidelines. The patient's family and their continuous support are identified as the predominant coping strategies in the context of South Asia. Family members seem to play a vital role in the provision of community or home-based palliative care. They not only provide personal, emotional but also monetary support needed in the terminal phase of life-limiting illness.\u003c/p\u003e","manuscriptTitle":"Systematic review on coping strategies used by palliative care patients in South Asia","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-06-17 16:36:51","doi":"10.21203/rs.3.rs-4480982/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"e738418d-dbc5-4270-9e01-9eb3fb81c35b","owner":[],"postedDate":"June 17th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-02-13T06:54:28+00:00","versionOfRecord":[],"versionCreatedAt":"2024-06-17 16:36:51","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-4480982","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4480982","identity":"rs-4480982","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}