INTRODUCTION

Bangladesh is a lower-middle-income country with a population of more than 170 million people. Since 2014, the majority of deaths have been due to non-communicable diseases (NCD), with substantial serious health-related suffering occurring for many people at the end of life.[1] It is estimated that there are more than 800,000 individuals in need of palliative care at any given time.[2] Palliative care is an approach which focuses on relieving serious health-related suffering through early identification, comprehensive assessment and effective management of pain and other physical symptoms, as well as psychosocial and spiritual suffering.[3,4] To ensure the best possible quality of life, palliative care uses a team approach, addressing physical as well as practical concerns for individuals with serious or life-limiting conditions and their families.[3] Palliative care teams often include health care professionals as well as community health workers and volunteers, who are equipped to address different aspects of serious health-related suffering for patients and their families.[5]

The World Health Organisation (WHO) has recognised the importance of palliative care in the comprehensive management of NCDs; however, globally, 77% of deaths from NCDs occur in low-and middle-income countries (LMIC), where access to palliative care is often almost entirely absent.[6] Palliative care has also been included in the definition of Universal Health Coverage (UHC), which envisions that all people have access to the full range of health services that they need.[7] Despite the clear importance and need for palliative care, its availability in Bangladesh remains very limited, with only a small number of palliative care programmes which are often supported by charities and non-governmental organisations. Palliative care has not been integrated into the national health system, despite the clear need for this service within primary health care.[8] Geographically, the distribution of palliative care does not match needs, with most palliative care programs in the capital city of Dhaka, despite more than 85% of the population living outside of Dhaka.

Community participation in health care is identified by the WHO as an important component of primary health care, recognising that communities have resources, knowledge and energy that can be harnessed and mobilised to support health care delivery.[9] Community participation in palliative care was first pioneered in Kerala, India, using trained volunteers to conduct home visits to address psychosocial and spiritual concerns and identify issues requiring treatment by medical professionals.[10] Community participation in home-based palliative care has now been successfully implemented in several other low-resource settings, using multi-disciplinary palliative care teams that include both volunteers and community health workers.[11,12]

In a community-based palliative care program, volunteers are trained and supported to visit individuals at home, provide emotional support, as well surveillance for issues needing attention from health care workers.[12,13] Volunteers are also empowered to raise awareness about palliative care in their local communities and often mobilise resources to support the practical and medical needs of those with serious illnesses.[10,14]

In low-resource settings, a community-engagement approach, incorporating volunteers, can have additional benefits. Engaging the local community also allows them to give input into the program design, ensuring that the program better matches local needs. Community-based palliative care can reduce costly care in health facilities by allowing patients to receive care in their own homes while also reducing the need for patients to travel long distances to see specialists at tertiary hospitals.[10] Incorporating volunteers into a community engagement model of palliative care suggests a potential strategy to rapidly increase the availability of basic palliative care for the large number of individuals who urgently require this type of care, particularly in LMICs, which often face shortages of health care professionals.

In 2015, the first community-engaged palliative care program was implemented in Bangladesh, following the Kerala model.[15,16] The program served older adults in an urban slum community in Dhaka, using volunteers and community health workers, to provide surveillance and support through regular visits to patients and their family caregivers. Subsequent evaluations of the program found improved both psychosocial and spiritual distress as well as reducing out-of-pocket health expenses for program beneficiaries.[16] In 2017, a paediatric component was added to the program in the slum in Dhaka, which was found to improve quality of life for children and their families, through improved pain and symptom control. In 2018, a second community-engaged palliative care program was initiated in Narayanganj, another city in Bangladesh, 25 km south of Dhaka. Each of these programs incorporated trained volunteers who engaged in community activities to raise awareness about palliative care. Volunteers were also trained to conduct regular home visits supported by community health workers, physicians and nurses.[11,17]

The role and experiences of volunteers in palliative care programs have been well described in high-income countries (HIC), with studies describing the benefits and motivations of volunteers, including a sense of purpose, as well as increased confidence and connection.[18,19] Studies in HICs have described the role of volunteers in palliative care programs, with most volunteers providing psychosocial care, while a smaller number participate in basic nursing tasks.[18,20]

Despite the proposed benefits, studies of volunteers in HIC note that volunteer work in palliative care can be associated with considerable stress. Volunteers may feel uncertain of their role, and without adequate support and supervision from health professionals, they often do not continue to volunteer.[20,21]

There are very few studies describing the experiences or roles of palliative care volunteers in Bangladesh or other LMICs, where the social and cultural factors influencing volunteers may differ from HICs.[22,23] One study of volunteers at a tertiary hospital in India identified that the tasks performed by volunteers vary significantly between HICs and LMICs, with volunteers in India providing supportive counselling to patients and their family members and helping them navigate through the hospital departments.[24] A study in Uganda described altruism, civic engagement and gaining experience toward a professional career as the main motivators for local volunteers in that setting. Understanding the experiences and support needs of volunteers in low-resource settings will provide guidance for program administrators about how best to train and support volunteers in these settings. The aim of this study is to explore the roles, motivations and challenges as well as the support needs of volunteers in a community-engaged palliative care program in Bangladesh.

MATERIALS AND METHODS

Qualitative interviews were conducted with volunteers in two community-based palliative care projects in Bangladesh, in Dhaka and in Narayanganj. Volunteers who participated in either of these palliative care programs were invited to participate in the study.

Sampling and recruitment

Purposeful sampling was used to explore the wide range of volunteer experiences, with participants being selected from particular subgroups to facilitate maximum variation sampling.[25] Subgroups considered in sampling are shown in Table 1. Sampling was iterative, incorporating new characteristics as the data collection progressed. Potential participants were recruited through word of mouth by the program coordinators in the respective programs.

Table 1: Subgroups considered in stratified purposeful sampling.

Category Groups Age <25 years, >25 years Occupation Homemaker, student, worker Duration of volunteering Limited (<1 year), extensive (>1 year) Gender Male, female Location Dhaka (Korail), Narayanganj Sample size

There were 150 volunteers between the 2 project sites (Korail and Narayanganj), and ten volunteers were included in the study, balancing the scope of the research and study feasibility. The sample size was not pre-determined and was derived from the iterative process of data collection and analysis.[26] Since this study is exploratory in nature, data saturation was not an endpoint, and findings are applicable without saturation.[27]

Data collection

Semi-structured individual interviews were conducted (face-to-face) using open-ended questioning based on an interview guide. Probing questions were used by the interviewer to explore responses in greater detail (Supplement 1). The interview guide focused on volunteers’ previous volunteer experiences, motivation, challenges, facilitators and future expectations related to volunteering. The interview guide was developed through a review of the relevant literature, followed by review and modifications by the study team and members of the project team (1 doctor, 1 nurse and 1 community health worker) and a potential participant (1 volunteer).

One study team member (MKC), a Bangladeshi palliative care physician involved in implementing the palliative care program, conducted all interviews. As an ‘insider’, the researcher brought a well-developed understanding of the palliative care program to the research, which supported the development of research questions grounded in a rich understanding of the context.[28]

Interviews were audio-recorded and transcribed; data were collected through interviewer note-taking and audio recordings. Each interview lasted between 20 and 40 minutes. Interviews were conducted in Bengali and were audio-recorded. Audio recordings were then transcribed and translated into English. After de-identification, analysis was conducted using NVivo-12 software (QSR International Inc., Cambridge, MA).

Data analysis

Content analysis was conducted where codes were generated directly from the transcripts.[29] Transcripts were reviewed several times to familiarise with the content and define codes. The code was grouped and organised into categories to identify common themes that emerged. Themes were further compared and evaluated to synthesise a descriptive summary.

Researcher bias and reflexivity

The research design was developed from the literature review based on the research questions. During data collection and analysis, the study team discussed and reflected on study themes and ideas, including how their own professional experiences and perspectives were affecting interpretation of results.

Organisational context

The community-based palliative care programs included in this study were in Dhaka, in the urban informal settlement of Korail, and in Narayanganj. At both sites the palliative care teams included health care providers, community health workers and volunteers. Doctors, nurses, physiotherapists and other allied health professionals were part of the teams. The community health workers were specially trained Palliative Care Assistants (PCAs), who completed 6 months of practical and theoretical training in palliative care. These palliative care programs are both supported by a combination of international donors and a local charitable foundation. The local communities are involved in decisions about the program activities and support through partnerships with local community leaders and the government. The programs are conducted in partnership with the Department of Palliative Medicine at a tertiary referral hospital (Bangabandhu Sheikh Mujib Medical University), where project staff receive palliative care training and can access referrals and advanced from palliative care specialist physicians and nurses. There are 19 PCAs involved in the projects, as well as 20 palliative care doctors and 8 nurses.

RESULTS

Ten volunteers were interviewed, including 5 (50%) from Narayanganj and 5 (50%) from Dhaka. The study participants had a wide range of experiences, including students (n = 4, 40%), workers (n = 4, 40%) and homemakers (n = 2, 20%). Further demographic data are shown in Table 2.

Table 2: Demographic data of interview participants (n=10).

Age n % <25 years 6 60 ≥25 years 4 40 Gender   Female 6 60   Male 4 40 Occupational status   Homemaker 2 20   University student 4 40   Employed outside of the home 4 40 Education   Less than secondary school (year 10) 2 20   Completed secondary school (year 10) 1 10   Completed higher secondary school (year 12) 5 50   Completed some post-secondary studies or higher 2 20 Duration of volunteering in this project   <1 year 4 40   >1 year 5 60 Location of volunteering   Dhaka (Korail) 5 50   Narayanganj 5 50 Interview findings

Five main themes and five subthemes were identified. Major themes included motivation and impact, training and roles, challenges, support system and future directions. The themes and subthemes are shown in Figure 1.

Figure 1: Major themes and subthemes among community-based palliative care volunteers.

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Motivation and impact

Most volunteers were initially introduced to the program by other volunteers or by PCAs whom they knew personally from the community. One volunteer had direct experience with community-based palliative care, as her family member had received palliative care from the program, and after the family member died, she started working as a volunteer. She was motivated by a desire to ensure that more people would be able to have palliative care, which she felt had helped her family. Almost all volunteers reported significant positive impacts from volunteering, deriving meaning and personal satisfaction from helping others, and these experiences motivated them to sustain their volunteer activities. One volunteer (V1) described: ‘The love of the patients, I mean the prayers of the patients, after the work. The smiles of the patients inspire me…. I will feel that this girl [an individual receiving palliative care] has embraced me while society threw me away. You’ll never get this bliss in exchange for money, even.’ Another volunteer (V2) stated: ‘...(after returning) home, I feel good about the whole day that my 10–15 min time made someone smile’.

Most volunteers were highly motivated, although some volunteers noted that their education or employment responsibilities prevented them from devoting as much time as they wished to palliative care. One volunteer described being discouraged from volunteering by her family, ‘The day I come to work for palliative care, I get a bit of scolding from mother, [she asks] why do I need to go out for back to back [for] 2 days’, yet despite the family pressures, she remained dedicated to volunteering, noting, ‘as long as I am unmarried, I will continue to work in this place… I still love [volunteering], so I go out of the house after being scolded and when I go out and talk to the patients or when I hear the patient talking about happiness or sadness, I see that the patients are praying for me at home…. all the sadness wash out [of me] and then I think the day I got the blessing I think all will go well for me’

Many volunteers expressed that they planned to continue volunteering, ‘I want to work for people, for palliative care for life, wherever I live and wherever I go’. Others noted that their responsibilities and expectations of family members could get in the way of their continuing in their role. Several volunteers expressed interest in further palliative care training, and some were interested in completing the PCA training program.

Training and roles Training

Volunteer training differed between Narayanganj and Dhaka. Those from Narayanganj participated in a mandatory 3-day training workshop led by doctors and nurses from the Department of Palliative Medicine at Bangabandhu Sheikh Mujib Medical University. This training included instruction in effective communication through active listening and supportive counselling. Other important training topics which volunteers recalled included specific teaching on care of the elderly and caring for individuals with intellectual disabilities by conducting symptom assessments using facial cues for pain. In contrast, the volunteers from Dhaka (Korail) received practical training from PCAs by accompanying them during their day-to-day home visits. These volunteers did not receive any formal classroom-based training; nevertheless, both groups noted feeling confident in supporting patients. Several volunteers suggested that longer training or having refresher training after their initial training would help them to review and solidify key concepts and skills. Volunteers were interested in understanding medical care better, suggesting specific topics for training, such as ‘the appropriate response to a patient experiencing an acute episode of convulsion… What is the process of measuring blood pressure?’

Roles

Volunteers described participating in a wide variety of activities, including emotional support, basic health education, personal care and providing practical non-clinical supports. Volunteers frequently identified that they provided supportive counselling to patients and their family members by engaging in active listening. Volunteers also described how they provided basic health education, including guiding patients about medication administration, ‘we check the medicine at the patients’ home to see if they are taking it properly, if they have not taken it, we give it to them’.

Volunteers frequently helped with basic tasks such as feeding patients and providing personal care, such as nail clipping. Volunteers also participated in practical tasks such as delivering food to patients and ensuring that they had adequate medical supplies. Many volunteers also mentioned distributing soap, hand sanitiser, gloves and masks to patients during the coronavirus disease-19 (COVID-19) pandemic. Several volunteers collected monetary donations and felt that they should work on recruiting new volunteers to help support further fundraising activities.

Over time, volunteers often became closely linked with the families with whom they volunteered, and this seemed to be related to being part of the same community, as many volunteers noted that they lived close to the patients and families. Volunteers described developing close and trusting relationships with the families, noting that caregivers and other family members often confided in them or asked for their support in times of crisis. A volunteer described fulfilling important cultural rituals, noting that ‘when many patients die, we make arrangements to send them back to their village if there is no one [family member] of their own’

Challenges and potential solutions Program related

Program-related challenges identified by the volunteers included a lack of resources, medical and practical supports such as essential medicines, food and support from HCP. Volunteers also discussed challenges caused by the COVID-19 pandemic, including limitations on patient visits and the need to wear masks. They also noted that the challenges for people experiencing poverty were amplified by COVID-19, as they were more affected by lockdowns: ‘Many lost their jobs, those who were ill, could not work and stayed at home all day. Their food packets [provided by the palliative care program] needed to be increased.’

Some volunteers identified that having specific resources, such as an ambulance service, more frequent doctors’ visits or providing more medicine for free, would further support patients. One volunteer noted that ‘s ome medicine is given [by the PC project], some are not, but there are patients who also need additional external medicines, but they can’t buy them. My advice would be to add some more medicines to the medicine inventory so that patients don’t have to buy them.’ Volunteers understood the holistic nature of palliative care and what the project needed to do to provide this, noting that ‘if greater attention is given to the physical, mental, social and spiritual well-being of individuals, along with their specific needs and the quality of their familial relationships, improvements will probably occur. Otherwise, if this condition continues, the patient will suffer more.’

Patient and family related

Many volunteers described challenges in establishing relationships with patients and caregivers, noting that patients and their families initially misunderstood or were distrustful of the palliative care program. One volunteer mentioned how, ‘at first, they [the patients] understood Palliative Care to be an NGO. Most of the NGOs in Bangladesh sound a bit like blood sucking types…Gradually, our acceptance increased when they understood us. But it was not easy.’

Volunteers noted that patients initially struggled to understand how palliative care could help them when they had been told that their disease was incurable by medical professionals. In these situations, volunteers patiently and repeatedly explain palliative care and correct patients’ misunderstandings about palliative care so that patients can better understand how palliative care could help them.

Support system

Volunteers described feeling well supported in their role and frequently identified the PCAs or other project staff as a source of support. The supportive relationships with paid project staff were developed and maintained through joint home visits between project staff and volunteers. When asked, volunteers felt that they could seek additional support from PCAs or other staff, although none of them had done so.

Creating formal opportunities for volunteers to interact and share their experience to better support each other emotionally was suggested to enhance support, ‘we volunteers can be burned out at seeing patients all the time, so I think you should 1 day call all the volunteers and [so that they can] spend time talking together’.

Future directions

Volunteers felt that similar community-based palliative care programs should be available nationwide to benefit as many people as possible, ‘it should spread countrywide. each district must have a palliative care centre so that [patients] can depend on that and get necessary help…’. Another volunteer emphasised the important role of volunteers in creating awareness to facilitate implementation of community-based palliative care nationally, ‘if we promote [palliative care nationally]… the young people in that district will get at least some idea that there is an organisation called palliative care [which includes] volunteers and everyone needs it. In the context of Bangladesh, this service is needed by every human being.’

DISCUSSION

This study is the first to describe the experiences of volunteers in community-based palliative care in Bangladesh, identifying motivating factors, training experiences, challenges and future directions. Volunteers from well-established community-based palliative care programs were highly motivated to participate and developed deep and trusting relationships with the program clients who were from their own community. Volunteers received support from palliative care team members and other volunteers, which helped to motivate and sustain them. Volunteers were able to identify gaps in the medical and psychosocial support needs of patients and their families, suggesting areas for improvement in service delivery. Volunteers were able to address myths and barriers to the acceptance of palliative care with patients and their families. The impact for volunteers extended beyond personal satisfaction, as volunteers came to recognise that palliative care was so important that it should be widely available and even implemented nationally.

Motivation and impact

Recruiting and retaining volunteers remains a challenge for palliative care organisations, and may be particularly difficult in resource-limited settings and places where the idea of volunteering is not well established. A previous study in India found that most volunteers heard about the program from local newspapers, friends, hospices or organisations working with cancer patients.[24] Using word of mouth and personal experiences appears to be effective in Bangladesh, where information about the existence of a volunteer program reached interested individuals who then came to explore the opportunity. A study reviewing the role of volunteers in end-of-life care identified that younger volunteers are more often motivated to volunteer for career reasons.[21] The present study identified that volunteer experiences generated interest among volunteers to train to work in palliative care, specifically as a PCA, a finding which has not been previously reported in the literature. This suggests that volunteering may provide exposure to a field in healthcare for communities where young people may not have considered work in this area. Further studies should further explore this finding and how characteristics of volunteers or the PC program impact this.

The present study identified factors which sustained motivation and participation, including the personal benefits derived from volunteering. Volunteers described feeling joy at being able to bring a smile or happiness to someone else, and similar experiences have been reported in high-income countries, where volunteers who make connections and feel valued in their role will continue to volunteer.[21] Similarly, volunteers in India noted that satisfaction derived from engaging in meaningful acts was a motivating factor to continue their activities.[24] The present study’s findings are particularly important since they suggest that the despite the vast differences in resources available in Bangladesh compared to high-income countries, some aspects of the volunteer experience are similar, with meaning derived from the positive impacts which can be observed for patients and their families. Further studies in resource-limited settings are needed to explore motivation and how this is affected by income or family support in LMIC.

It has been proposed that volunteering may be more challenging for individuals in LMIC who may not have the financial freedom to volunteer their time and instead need to work to support themselves and their families.[30] Providing financial support has been used to enhance and support volunteers in LMIC. In South Africa, volunteers receiving a stipend worked 20–40 h/week, significantly more than those who were unpaid and worked 4–20 h/week.[31] Our study identified that volunteers’ time was limited by the needed to work or study, however despite these challenges, volunteers described making time to bring a smile to someone else’s face and expressed a deep commitment to continuing to volunteer in palliative care-‘I want to work for people, for palliative care for life long, wherever I live and wherever I go.’ Further studies should explore the financial implications of volunteering in LMIC and explore novel models of support which could further support and enhance the work of volunteers in settings where financial concerns may limit the scope of volunteers’ unpaid contributions.

In Bangladesh, family pressures, particularly the traditional expectations that women should stay at home, may limit their volunteer activities, and this was evident in our study, where one young unmarried female volunteer described how her family did not support her volunteering. Despite this pressure, this volunteer remained steadfast in her commitment, identifying the significant benefits of volunteering, which provided her with a sense of meaning and fulfilment. These experiences in Bangladesh contrast with those from Kerala, India, where there is a well-established program of community-led volunteering and there is almost equal gender participation.[22] Social and cultural expectations vary widely across South Asia, and the impact of these on volunteering, particularly in palliative care, which deals with those who are seriously ill and dying, should be further explored in Bangladesh.

Roles

Several studies described the wide variety of roles which volunteers have in PC in India, the Philippines and Uganda, which are expanded beyond the traditional roles of volunteers in HIC.[24,32,33] The roles include emotional support, basic physical care and practical supports, and the present study identified similar roles for volunteers in Bangladesh. Guiding patients to take medications correctly was an important role for volunteers in Bangladesh, and a previous study in South Africa identified how volunteers can enhance medication adherence and health literacy. Further studies are needed to understand how volunteers can improve symptom control through medication adherence and how best to train and support them in this role.

Previous studies in Kerala, India, have described the important role which volunteers play in building community-level awareness about palliative care.[22] In the state of Kerala, with a population of 35.8 million, more than 150,000 volunteers have been trained in palliative care. Although only about 10% are estimated to be actively involved in palliative care activities at any 1 time, all those who have been trained have a role in spread the word about palliative care, and even if these volunteers appear ‘passive’ they have a role in contributing wider palliative care awareness among their social circles.[14,22] In a similar way, this study in Bangladesh also describes how volunteers addressed myths and gaps in understanding about palliative care with patients and their families.

Drawing volunteers from the local community may also be critical for addressing myths and fears related to accepting palliative care, since volunteers may be able to adapt the message to the concerns of the local community and the message may be better received since they are not perceived as outsiders. In the present study, volunteers were successful in convincing patients and families of the value of palliative care and developing trust between them and the project team, assuring them of the genuine good intentions of the palliative care team. How to train and empower volunteers in Bangladesh to spread awareness and address myths about palliative care is an important question for future studies.

Several studies in LMIC have identified the importance of drawing volunteers from the same community as the patients being served by the program, which is necessary for program success.[22,31] In Kerala, local volunteers are well positioned to identify and respond to the needs of those with serious illnesses in their communities, and the present study mirrors these findings, as the volunteers were able to identify medical and social needs of patients and make suggestions for how best to adapt the palliative care program to address these needs. Even in communities where resources are limited, such as urban informal settlement areas (slums), encouraging engagement and volunteering from local people is very important to ensuring the project truly meets the unique needs of the community. Given the grassroots level of these community programs that we describe, it is possible to influence changes rather quickly and directly with great impact to influence long-lasting and sustainable changes.

Community-based palliative care has not been widely implemented in Bangladesh, and there is a significant unmet need for palliative care throughout the country. After training and participation in the Narayanganj and Dhaka projects, volunteers identified this national-level gap and the need for advocacy and efforts to implement palliative care services across Bangladesh. This suggests that volunteers may have a wider role beyond just advocacy for palliative care at the local community level, and health professionals should incorporate volunteers into advocacy activities at a regional and national level, also. In Kerala, volunteers are involved throughout the state in designing and delivering services.[22]

Support system

Volunteers derived significant support from the wider palliative care team, particularly from the PCAs, which allowed them to continue in their role. Previous studies have identified that volunteers are motivated to sustain their involvement when they are integrated as full members of the multidisciplinary palliative care team.[21] A study from the Philippines described how volunteers were included in weekly team rounds to break down the traditional medical hierarchies and ensure that volunteers have adequate information to effectively perform their role.[34] Participating in joint home visits with PCAs seemed to be effective in ensuring opportunities for this type of collaboration in our study. Further studies should explore how best to integrate volunteers into the wider palliative care team and how this contributes to their feelings of support and willingness to continue volunteering.

Strengths

This is the first study to describe the use of community volunteers in palliative care in Bangladesh. The study provides a detailed picture of the volunteers’ experiences, including motivation, impact, roles and support. The study includes volunteers from a wide variety of backgrounds, which suggests that the findings may apply broadly to volunteer experiences in Bangladesh, suggesting key strategies to support volunteer experience, engagement and integration into the palliative care team.

Limitations

The study limitations include the limited number of participants, as further participants may add further insights which were not identified here. Aspects of participants’ experiences may be unique to the specific palliative care program they volunteer for, since each program is designed and influenced by the local community itself.

CONCLUSION

This study describes how volunteers in Bangladesh experience their role in a community-based palliative care program which provides home-based care centred on local community health workers (PCAs). Volunteers are motivated by a desire to help those in their community and the personal reward of seeing the profound positive impacts that they can have on the lives of others. Involving volunteers who are from the same community as patients is particularly important since this allows deep and trusting relationships to form between volunteers and patients and their families, which allows the palliative care services to be effectively adapted to the community’s unique needs. Volunteers need to be fully integrated into the palliative care team to support them in continuing to provide care in the face of serious illness and death. Volunteering in palliative care leads individuals to recognise the importance of palliative care on a much larger scale and may encourage them to advocate for palliative care on a regional or national level, which can reduce suffering for seriously ill individuals on a much broader scale.