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

Abstract

Background: The number of people with life limiting illnesses seem to be rising in the South Asia’s fast-growing population. 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 future and death. Some of the coping strategies which patients employ to deal with these stressors include support from family members, increased religiosity, and acceptance of their condition. Aim: To explore how palliative care patients of South Asia cope with the various psychosocial stressors experienced during their ailment. Design and setting: 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. Extracted data included participant demographics, study characteristics and coping strategies employed. Thematic synthesis was undertaken. 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 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 feeling of loneliness during their illness. 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 in the context of palliative care in South Asia. It highlights a need for further research to be carried out in this area to better understand patient’s experiences and help develop policy and guidelines. The patient's family and their continuous support is identified as the predominant coping strategy in the context of South Asia. The family members seem to play a vital role in 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.

Keywords: Palliative care, End of life, Qualitative, Coping, South Asia.

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 a collective population 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 categorised 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.

Research Question:

How do adult palliative care patients in South Asia cope with psychosocial stress?

METHOD

This systematic review was conducted according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines (8) (9). The Critical Appraisal Skills Programme (CASP) checklist was used to evaluate the quality of the included articles.

Prospero Registration ID: CRD42024538576

Ethics Statement

All data were obtained from published sources, so no ethics review was required.

Search Methods

The following four databases were searched from inception to May 2024: 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 the 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 focusing only on the carer’s experience.
Primary care or any community setting	Physician’s experiences
Qualitative studies, descriptive, cross-sectional, and observational studies	Quantitative studies, conference abstracts, reviews, or editorials
Studies in the 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

ThePRISMA 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 (Figure 1):

Figure 1. PRISMA flow chart

Data extraction and quality assessment

Excel was used for data management and screening, and for reference management, EndNote software was used. 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).

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 participants 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 in Table 2:

Table 2. Study Characteristics

Settings	Design	Aim	Title	Authors/country
Palliative care patients and their primary caregivers enrolled in the community-based palliative care project	Qualitative study with an ethnographic approach	This study explores the experiences of palliative patients and their primary caregivers enrolled in a palliative care project.	Solidarity and suffering: enrolled terminal patients’ and their caregivers’ experiences of the community-based palliative care programme in an urban slum of Bangladesh	Akter et al., 2022Bangladesh
Palliative care	Cross-Sectional Observational	This study aims to better understand the psychosocial and spiritual needs and supports of patients with advanced, incurable illness in Bangladesh	The Psychosocial and Spiritual Experiences of Patients with Advanced Incurable Illness in Bangladesh:A Cross-Sectional Observational Study	Doherty et al., 2019Bangladesh
Palliative Sciences Palliative Care Clinic in Trivandrum, Kerala, India and patients’ homes in the surrounding area	Semistructured qualitative interviews	To investigate the psychosocial and spiritual problems of terminally ill patients in Kerala, India	Psychosocial and spiritual problems of terminally ill patients in Kerala, India	Elsner et al., 2020India
Inpatients in a hospice and palliative care centre	Descriptive and cross-sectional	To study the influence of spiritual well-being on symptoms of distress, depression, and other dimensions of quality of life in advanced cancer patients receiving palliative care	Spirituality, distress, depression, anxiety, and quality of life in patients with advanced cancer	Kandasmay et al., 2011India
Terminally ill cancer patients undergoing palliative care	Observational, cross-sectional	This study attempts to identify effective coping strategies that lead to life satisfaction among those afflicted with terminal cancer	. Coping styles and life satisfaction in palliative care.	Garg et al.,2018India
Patients with advanced cancer were admitted to the Pain and Palliative Care Unit in a regional centre in New Delhi.	Observational	To identify the prevalence of psychosocial concerns in patients with advanced cancer admitted to our cancer centre and the need to address these concerns.	Psychosocial concerns in patients with advanced cancer: An observational study at the regional cancer centre, India	Mishra et al., 2010India

Quality appraisal

The quality appraisal of the studies according to the CASP criteria is outlined collectively below (Figure 2). This instrument incorporates 10 questions from the CASP checklist for qualitative data questions answered as yes (✓), no (×), or cannot tell (?).

Quality appraisal

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 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 could not seem to provide 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 a 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, and 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 had 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 one to look after them. One male patient who lost his wife a few years ago and now lives 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 gather courage and find 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 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, 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 in palliative care cope in the region of South Asia. This review highlights a gap between the need of this population for psychosocial support and the 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 apply to all patients in South Asia because they represent a diverse group residing in diverse geographical areas with different dialects and religious beliefs. Data are from only two countries (India and Bangladesh), limiting generalizability across South Asia.

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 the 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. Recognising 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.

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.

Competing interests

The authors declare that they have no competing interests.

Funding

No funding was received.

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