Abstract
Background:
Globally, more than 97% of children needing palliative care reside in low- and middle-income countries, where there is very limited access to palliative care. Several community-based palliative care programs focused on adults, have been described in resource limited settings, suggesting a simple and low-cost approach to providing palliative care. The implementation of community-based palliative care for children has not previously been described.
Context:
This community case study describes the implementation of an innovative model of community-based palliative care program in and urban informal settlement, (Korail Slum, Bangladesh). The program is led by a local government hospital, with experience in community-based palliative care, in partnership with the local community.
Problem:
Children with serious conditions in an urban unformal settlement do not have access to health services which address their medical, psychosocial and spiritual needs. This gap leads to a significant burden of preventable suffering for them and their families.
Solution:
A community-based palliative care program was implemented, which includes home care by trained community health workers, with support and supervision from palliative care nurses and physicians. The program’s objective is to provide effective symptom management, clear communication about the child’s condition with parents, and psychosocial support including support for basic needs. The program was free for families including medications, medical equipment, physiotherapy, and speech therapy. The program was monitored through regular assessments of quality of life using standardized tools (PedsQL Family Impact Module), as well as interviews and focus group discussions.
Conclusion and lessons learned:
A model of community-based palliative care for children can be implemented in an urban informal settlement. Program effectiveness is enhanced by community health workers who share language, culture, and life-experiences with the individuals they serve. Partnerships with local health care facilities and community groups strengthen the program’s sustainability. Ensuring financial sustainability remains a challenge.
Background
Children’s palliative care (PC) is an important aspect of care for many children with chronic conditions which are life-threatening or life-limiting. PC seeks to address the physical, spiritual and psychosocial needs of children and their families. 1 The types of conditions where children may need palliative care include neonatal conditions, congenital anomalies, HIV/AIDS, cancer, and other chronic diseases.2,3 Globally, the vast majority (97%) of children needing palliative care are living in low- and middle-income countries, settings where access to these services is limited or non-existent. 4 In Bangladesh, a lower middle income country, there is very limited availability of palliative care, with a recent global palliative care mapping exercise describing only a few isolated services which are heavily donor dependent for funding. 5
Community-based PC programs are an important component of a public health approach to palliative care. 6 Community-based care can be a relatively simple and low-cost model to deliver PC. In community-based programs, patients receive care in their own homes or at nearby health facilities, thus reducing the need for travel long distances to tertiary hospitals.7,8 The state of Kerala in India is one of the pioneers in the community-based strategy and has developed a service delivery model where PC is primarily run by volunteers, with ownership by the local community. 9 Recently a similar model has been developed in an urban informal settlement (slum) in Bangladesh, focused on supporting older adults. The evaluation of this program reported improvements in psychosocial and spiritual care and reduced out-of-pocket health spending. 10
In urban informal settlements or slums, healthcare services are often very basic or poorly planned and the needs of children with chronic conditions are rarely considered. Children with serious or chronic conditions often require more specialized care and from multiple providers, and may have particular difficulties accessing the healthcare they need, due to the limited availability of this type of care in their communities. Additional, accessing specialized care from secondary and tertiary health facilities presents financial and practical challenges, such as transportation costs and loss of income for parents.11,12 Specialized community-based PC suggests a novel model of service delivery which can better reach and support children in urban informal settlements, by addressing their particular needs in their local community.
Study Aim
We describe our 5-year experiences of implementing a community PC program for children with life-limiting illnesses in an urban informal settlement in Bangladesh, a lower-middle income country, using the Plan-Do-Study-Act (PDSA) framework.
Organizational Context
The Korail Children’s PC Program, a community-based PC program, was implemented as a partnership between BSMMU and the Korail Slum community. Financial support was initially provided by World Child Cancer, an international charity focused on relieving the burden of childhood cancer in LMICs. Later the financial support shifted to the Palliative Care Society of Bangladesh, a local charitable organization supporting palliative care initiatives.
BSMMU is a tertiary referral hospital and medical university in Dhaka, Bangladesh. The Centre for Palliative Care (CPC) at BSMMU includes an inpatient PC unit (3 pediatric beds, 18 adult beds), outpatient clinic, and home care services. In 2015, CPC developed a partnership with the Korail community to implement a community-based PC program to support older adults. 13 Hence CPC was well situated to expand the existing PC program in Korail to include children, building on the training and experience of the PC team already working there.
The Korail Slum is organized by a group of community leaders who form the Central Community Based Organization (CCBO), their support is important when starting new activities in Korail. The CCBO had an established partnership with BSMMU from the adult PC partnership, which facilitated the development of the pediatric program. Clinicians and programmatic staff from the adult PC project, were motivated to begin the project, recognizing the gap in appropriate medical supports for these children who they were encountering during the delivery of the adult PC program.
Problem: In Korail slum, children with serious or chronic conditions do not have access to health services which address their medical, psychosocial and spiritual needs. This gap leads to a significant burden of preventable suffering for them and their families.
Population and Morbidity Patterns
Bangladesh is a lower-middle income country with a population of 164 million; 27% of the population under the age of 15. 14 The GDP per capita is US$1969 and 52% live on less than US$3.20 per day. 14 Bangladesh is experiencing rapid growth urbanization, with Dhaka, the capital city, doubling in size in the past 20 years to a population of 21 million. 14 Korail Slum is the largest urban informal settlement in Dhaka, with an estimated population of more than 100 000, including 50 000 children.15,16
In Bangladesh, the mortality profile has shifted to infectious diseases and conditions associated to undernutrition to non-communicable diseases (NCDs), which now account for more than half of total mortality. 17 There are an estimated 6000 to 9000 new cases of childhood cancer annually, but only 25% are diagnosed, around 40% of those diagnosed begin treatment, and 50% to 60% of those starting treatment are cured. 18 There an estimated 233 000 children with cerebral palsy, some of whom will require PC. 19 Based on estimates of disease burden in South Asia, there are an estimated 219 000 children (34 per 10 000) needing specialized PC at any given time, including an estimated 170 children in Korail. 2
Health Care in Bangladesh
Annual health expenditure per capita is US$42 (2.3% of GDP), with 77% of this being private or out-of-pocket spending. 14 The national health system also faces challenges of poor quality of care, under-regulation and lack of administrative capacity. 20
PC provision in Bangladesh is isolated with services mainly in Dhaka, including several hospital and home-based programs. There are several hospital-based pediatric PC services in Dhaka, which are focused on children with cancer, and one free-standing pediatric hospice facility (9 beds) run by Ashic Foundation, a charitable organization. Community-based programs for adults have been established in Dhaka, Narayanganj, and Cox’s Bazar District.13,21,22
Since 2015, palliative medicine has been recognized as medical specialty, and there is a residency training program at Bangabandhu Sheikh Mujib Medical University (BSMMU). Education in PC is starting to be incorporated into nursing and medical training curricula. The Dept of Palliative Medicine at BSMMU runs a variety of short PC training courses, including certificate courses and shorter programs, ranging from 3 days to 6 weeks, for doctors, nurses, social workers, community health workers, and volunteers.
Solution: A PC service which delivered care directly to children with serious illnesses in their own homes, using a community-based approach was designed, developed, and implemented using the PDSA cycle to guide the implementation.
Plan Phase
Engaging and sensitizing the Korail community
Having directly observed the benefits of the adult PC program in Korail, community leaders were immediately supportive of the proposal to develop a PC program for children. The program’s key elements were developed through several workshop with BSMMU palliative care clinicians and community leaders. Meetings were also conducted with organizations providing health and social programs in Korail, to explore their perspectives on service needs, educate them about the proposed program, and avoid duplication of services.
The Korail community was sensitized to the program through courtyard information sessions and awareness event, including programs celebrating World Hospice and Palliative Care Day and other special days. Volunteer opportunities, which included supporting palliative care awareness activities, fundraising and visiting patients and families, were advertised during these events and a volunteer training program was subsequently delivered.
Awareness programs continued throughout the program, including a school-based awareness program with teachers’ workshops and creative art activities for school children (drawing and poetry). School programs were intended to increase awareness about the challenges and needs of children with disabilities and serious illnesses among their teachers and peers.
Assessing needs
Initially, we conducted a door-to-door household survey to identify children with serious illnesses, with trained community assessors. Assessor training included descriptions of common life-limiting conditions in children, and a program leader was available by phone to answer questions about eligibility during the survey. After a child was identified, a physician or nurse visited to determine if the child was eligible, using WHO guidelines for which children should receive PC. 23 All eligible children and families were invited to participate in the program.
The initial program objectives were developed based on the needs assessment survey and recommendations from program stakeholders, the Korail adult PC program, and local and international PC leaders (Table 1).
Initial Objectives of the PPC Program in Korail Slum.
Once the program started, referrals were accepted from families themselves as well as community members, other local aid organizations, and healthcare providers. A total of 46 children have been served by the program, with 28 currently enrolled, 9 have died, 7 children moved out of Korail Slum, and 2 children were discharged from the program after their conditions improved substantially as they illness was no longer considered life-threatening or life-limiting. The majority of children currently in the program have cerebral palsy (n = 20, 80%). Table 2 shows further details about the children in the program.
Characteristics of children in the PPC Project.
Do Phase
The paid staff of the PC team consisted of 3 PCAs, 1 program coordinator, 1 nurse, 1 doctor, 1 physiotherapist, 1 speech therapist. The PCAs and program coordinator were full time staff of the program while the nurse and doctor were shared with the adult palliative program in Korail. The physiotherapist worked 2 days per week and the speech therapist 1 day per week. Additionally a team of community volunteers was assembled and trained. All services were provided free of charge.
The Palliative Care Assistants (PCAs) were community health workers (CHWs), who were trained to provide palliative care. PCAs were secondary school graduates who received basic PC training through a 24-week structured program at BSMMU. The training included 6 weeks of classroom-based learning followed by 18 weeks of supervised clinical training on BSMMU’s inpatient PC unit and through home visits in Korail. Training was supervised by PC nurses and physicians at BSMMU. Their visits were conducted twice per week, with additional visits depending on patient acuity.
The PCAs were recruited from the Korail community. They provided regular visits and support to children and their families; their key roles and responsibilities are shown in Table 3.
Roles of responsibilities of palliative care assistants.
PC nurses and physicians conducted regular visits and provided supervision and support to PCAs. A nurse was available for telephone advice and urgent assessments 6 days per week. A trained medical officer visited Korail 3 days per week.
Physician and nurse training included a 6-week basic certificate in PC and clinical training from BSMMU. An experienced pediatrician provided medical supervision, reviewing all patients at the time of enrollment, and developing care plans in coordination with the program staff.
Allied Health Professionals including a physiotherapist and speech therapist provided weekly visits, working closely with the PCAs to implement physical therapy treatment plans. The therapists trained the PCAs to provide basic physical and speech therapies and support parents to complete the recommended exercises with their child. The physiotherapist worked closely with a local rehabilitation hospital to obtain appropriate assistive devices, including specialized seating and wheelchairs, which were provided to families free of charge.
The program also arranged for several children and their mothers with cerebral palsy to attend a 2-week inpatient rehabilitation program at the local rehabilitation hospital (Centre for the Rehabilitation of the Paralyzed), which provided their caregivers with intensive training in the child’s care (eg, stretching, feeding, toileting) and communication skills. 24
A project coordinator (paid position) oversaw the program, scheduling team members and coordinating home visits. The coordinator was responsible for ensuring that clinical records were kept up-to-date, monitoring family satisfaction with the program, and organizing community awareness activities and training workshops for staff and volunteers. The coordinator provided tours to program visitors and worked closely with the CCBO, donors, and other community groups to support program goals.
Clinical mentorship and ongoing training were provided by the PC team at BSMMU. Monthly team meetings were conducted between program staff and BSMMU clinicians, providing a forum for discussing clinical questions, debriefing of challenging cases, and teaching. Program staff were also included in self-care and social activities of the BSMMU PC team which typically occur twice per year.
The program had initially planned to hire a trained play therapist or counselor but was unable to find one. Counseling and play therapy are not yet registered professions in Bangladesh, and there are very few professionals in these fields. All team members received training on supportive communication and emotional support and how to facilitate therapeutic play activities. A chaplain or spiritual support professional was not involved as this role is not yet well developed in Bangladesh.
The original program plan included volunteers. A cohort of volunteers was trained, however, we found that although they were initially highly motivated, volunteers struggled to find time to volunteer due to pressure from work, studies, childcare and other household responsibilities and this portion of the program was not continued.
Setting
The program focused on home-based care, which caregivers found particularly helpful since they did not have to leave home to seek care for their child. Caregivers were quite open to having program team members visit their homes. Homes in Korail are generally simple 1 or 2 room structures made of wood and sheet metal.
Palliative care center
After the first year, the program was provided with a small parcel of land in Korail by the CCSO where a small medical center was constructed. We found the center served as a “hub” for the program, anchoring it in the community. Staff stored equipment and medical supplies securely and community members come to the center to learn more about the program’s activities. The center is located within 10 minutes’ walk from most patients’ homes.
The centered includes a multi-purpose room which is used for staff and volunteer training, awareness activities, meetings with community members, and as a medical clinic. There are several scheduled clinics each week, where patients visit with a team doctor or nurse. The speech and physiotherapist also use this clinic for their therapy sessions.
Play and therapy room
The center also includes a play and therapy room, with equipment, toys, and games (Figure 1). 25 There were drop-in “Play and Learn” sessions where caregivers could bring their children for developmental stimulation and play supervised by the PCAs during the first few years after the center was built, but these sessions were stopped due to low participation. Caregivers reported difficultly leaving home due to household chores and childcare responsibilities.
Children and palliative care assistants (in blue uniforms) celebrate the opening of the play and therapy room at palliative care center. Image credit: Megan Doherty.
Medications
Medications and medical supplies were provided free of charge to patients in the program. The medication provided included condition specific medications (eg, antiepileptics), medications for symptom management (eg, opioids), and medications for acute issues (eg, antibiotics). Providing a regular supply of medications, is particularly impactful as it ensured that children with chronic conditions, such as epilepsy, receive uninterrupted treatment, which most families were others not able to afford.
Pain and symptom management
Oral morphine liquid (1 mg/ml) and tablets (10 mg immediate release and 15 mg sustained release) were available from the hospital pharmacy at BSMMU. Injectable morphine was available for children who were admitted to the PC unit at BSMMU, which occurred when the child’s symptoms were challenging to manage at home. Most other commonly used symptom control medications were readily available.
Pain severity was routinely assessed using FLACC-R and Faces Pain Scale- Revised (FPR-S), depending on the child’s age and ability to self-report. Pain and symptom assessment using standardized tools was included in the intake assessment and was routinely assessed during follow up visits (Supplemental File 2). Further details about symptoms and quality of life have been previously published. 26
Equipment
Where needed, medical equipment including suction machines, nebulizers, wheelchairs, and specialized seating was provided free of charge. Specialized seating was particularly helpful for children with neurological problems, ensuring that they could be positioned upright for feeding, reducing the risk of aspiration and infections.
For children with neurological conditions, we carefully considered the need for adaptive equipment and discussed with family whether equipment would be practical and beneficial, using considerations shown in Table 4. For example, a wheelchair may not be practical in Korail, where the footpaths are very uneven or narrow.
Considerations when assessing the need for adaptive equipment in Korail PPC program.
Basic needs
Families in the program were provided with a free monthly food pack of rice, lentils, cooking oil, sugar, and salt to support their basic needs. Clothing and blankets were also provided as needed. In December 2016 and March 2017, 2 fires damaged many homes in Korail, including those of some of the children in our program. We collected donations to help program families rebuild and replace possessions lost in the fires. We also conducted regular sales of donated clothing and household items at the Project Centre, where items can be purchased a very low cost (about $0.10 USD per item). During these sales, items are also given free to those who cannot afford to pay. Table 5 shows the elements of support provided by the project.
Medical and social supports provided by the PPC project.
Services and referrals
The program provided management of pain and other physical symptom needs as well as providing communication and psychosocial support. If a child required more advanced pain and symptom management, they were referred to BSMMU for consultation and/or admission to the pediatric PC unit. The partnership and the shared staff of our program and BSMMU facilitated these transitions, helping families feel more comfortable in the unfamiliar hospital environment. The BSMMU PC services include inpatient unit, outpatient clinic (daily), home care, 24-hour telephone service and a specialized lymphedema clinic.
Advance care planning
The concept of advance care planning is not yet well developed in Bangladesh. The PPC team provided guidance to caregivers, engaging in discussions about treatment options and the potential risks and benefits. Discussions about goals of care generally occurred when the team observed changes in a child’s condition. There are no written advance care plans for most patients.
Financial support
For the first 2 years, the program was supported by World Child Cancer; however since the program served very few children with cancer, the charity discontinued their support. A local organization, the Palliative Care Society of Bangladesh, then started supporting the program. The annual program cost per patient is about $520 USD, further details of costs are in Supplemental File 1.
Efforts were made to develop a local fundraising base, but only about $100 US per month was raised from the local community. Table 6 shows a sample of fundraising which was conducted for both the adult and pediatric Korail projects.
Financial supports from for the Korail adult and pediatric palliative care programs over 19 months (June 2017-December 2018).
Study Phase
We comprehensively assessed each child and family using a standardized intake assessment which included physical, emotional, social, and spiritual assessments as well as communication and knowledge of prognosis.
All intake and follow-up assessments were documented in the patient’s file, which was shared and by all team members, including PCAs. These assessment forms are shown in Supplemental File 2.
The files are brought to the patient’s home with each visit and stored at the center between visits. This simple paper-based system required minimal supervision to maintain and avoids the technological barriers of electronic charting (see S2 eg,).
Each patient was reviewed monthly with the PPC team and more often as required. The team was able to access advice from a PPC consultant for challenging cases. The monthly reviews allowed the team to identify each family’s needs and provide appropriate supports.
Feedback about the program is elicited from caregivers, program staff, and community leaders regularly. We used the Bengali version of the PedsQL Family Impact Module and several locally developed questionnaires, developed by our team, to serially assess symptoms and quality of life for children and families in the program. 27 The local questionnaire is shown in Supplemental File 3. A more detailed description of the program’s monitoring and assessment has been reported elsewhere. 26
Act Phase
Adapt services to needs and experiences
We found it was necessary to adapt the program to effectively meet the needs of patients and their families in several key ways.
Since cerebral palsy and other neurological conditions are common conditions, we added physiotherapy and speech therapy services to the program. We developed a partnership with a local rehabilitation hospital for further support and provided additional training to staff on management of neurological conditions.
We had initially envisioned a fully home-based care model, but after the first year it became clear that a small health center including a dedicated play area, was an important adaptation to better meet the needs of children and families which would help to connect the program to the Korail community.
Unresolved questions and lessons for the field
We describe the implementation of an innovative model of community-based PC for children, centered on care by trained community health workers (CHW).
Most children in the program had cerebral palsy. A recent population-based surveillance study estimated that more than 233 000 children in Bangladesh have cerebral palsy, but only half have ever received any rehabilitation services.19,28 Community-based PC programs in LMICs should consider how to incorporate rehabilitation services which may improve the quality of life for children and their families. Additionally, we found that providing medications free of cost, helped ensure that chronic co-morbid conditions, such as seizures and spasticity, were well managed. By controlling seizures, we found that several children had improvements in their developmental abilities. Further exploration of how this program impacts the wider family is an unresolved question. Future studies should explore the financial impact of the program for families, including the impact on out-of-pocket health spending and indirect costs.
Our program effectively integrated CHWs, who became enthusiastic and committed palliative care team members. In Bangladesh, there are only 3 physicians and 2 nurses per 10 000 people, well below levels recommended by the World Health Organization suggesting that CHWs may be important in filling this gap.29,30 Training and empowering CHWs has been proposed as a strategy to increase access to PC in resource-limited settings, which was effective in this program. 31 The CHWs in this program were from the local community which may have increased comfort and acceptance by caregivers, since a recent review, which noted that shared language, culture and life experiences of CHWs and families increases their acceptance. 31 Further studies should explore the impact of working in PC for CHWs, particularly the impact on their personal psychosocial wellbeing and burnout. Our preliminary experiences suggest that CHWs found the work to be satisfying and meaningful, and they felt supported through their interactions with the PC clinicians on the team. 13
This program initially focused on providing home-based care, which was intended to address some common barriers to accessing healthcare, including caregivers’ need to take time off work and transportation costs. 26 As the project progressed, a small health center was added as this was helpful in increasing patients’ access to care close to home. The center play space for children provided additional room for developmental activities which were hard to provide in homes due to a lack of space. Further studies should explore the importance of a physical center and when and where this may be needed to improve similar programs.
Enablers of success
The experiences of developing and implementing the adult PC project in Korail contributed to this program’s success, by providing knowledge about how best to implement this program. In the adult program, there was initially some resistance from patients and caregivers to receiving care from PCAs, although community awareness programs and direct experiences of the program lead to greater acceptance over time. 13 In this program, patients and families accepted support from the PCAs without hesitation, likely due to these previous activities. 13 The strong partnership with local organizers in Korail and the donation of land for the Palliative Care Centre, are additional evidence of the community’s support for the program.
Partnership with the PC program at BSMMU and other local and international organizations were also key enablers of program success, with partners contributing financial assistance as well as technical assistance in program development, but sharing policies, clinical guidelines and education materials. Our findings support observations and expert recommendations that long-term partnerships between organizations in low-resourced settings and those in areas with more resources are a key ingredient of successful programs building PC capacity in LMICs. 32
Challenges
Initially we hoped to develop a sustainable funding base for the program from within Korail, but this was not possible. The funding from the Palliative Care Society of Bangladesh is able to support the program at its current level, but long-term funding for expansion of the program remains a challenge. This program continues to care for the children enrolled but we are unable to expand the program to include other children with life threatening or life-limiting conditions who we have identified in Korail. The question of how to develop sustainable funding, from both donor and governments, remains unresolved, and further work to explore how best to bring together support from the local community, government, national and international donors is needed. Local businesses have contributed some small amounts of funding, but lack the revenue to provide full support of the program.
Conclusion
The Korail Children’s Palliative Care Project is a community-based children’s PC program which describes the implementation of a novel model of PC which supports children living in settings with very limited resources, such as urban informal settlements. Incorporating community health workers in children’s PC programs in low-resources settings is feasible and effective and should be considered when designing programs to provide PC for children. Ensuring sustainability should be considered when developing PC programs for children in low-resource settings.
Supplemental Material
sj-docx-1-his-10.1177_11786329231162996 – Supplemental material for Developing Community-Based Palliative Care for Children: A Community Case Study from an Urban Informal Settlement in Bangladesh
Supplemental material, sj-docx-1-his-10.1177_11786329231162996 for Developing Community-Based Palliative Care for Children: A Community Case Study from an Urban Informal Settlement in Bangladesh by Mostofa Kamal Chowdhury, Maryam Bezzahou, Marufa Khanom and Megan Doherty in Health Services Insights
Supplemental Material
sj-docx-2-his-10.1177_11786329231162996 – Supplemental material for Developing Community-Based Palliative Care for Children: A Community Case Study from an Urban Informal Settlement in Bangladesh
Supplemental material, sj-docx-2-his-10.1177_11786329231162996 for Developing Community-Based Palliative Care for Children: A Community Case Study from an Urban Informal Settlement in Bangladesh by Mostofa Kamal Chowdhury, Maryam Bezzahou, Marufa Khanom and Megan Doherty in Health Services Insights
Supplemental Material
sj-docx-3-his-10.1177_11786329231162996 – Supplemental material for Developing Community-Based Palliative Care for Children: A Community Case Study from an Urban Informal Settlement in Bangladesh
Supplemental material, sj-docx-3-his-10.1177_11786329231162996 for Developing Community-Based Palliative Care for Children: A Community Case Study from an Urban Informal Settlement in Bangladesh by Mostofa Kamal Chowdhury, Maryam Bezzahou, Marufa Khanom and Megan Doherty in Health Services Insights
Footnotes
Acknowledgements
We would like to thank the Korail community for their continuous partnership.
Funding:
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Declaration of Conflicting Interests:
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Author Contributions
Conceptualized and designed the intervention: MKC, MD, MK
Collection and assembly of data: MKC, MD, MK
Data analysis and interpretation: MD, MKC, MK, MB
Drafted initial manuscript: MB, MD
Critically reviewed and revised the manuscript for important intellectual content: MD, MKC, MK
Final approval of manuscript: all authors
Accountable for all aspects of the work: all authors
Ethical Approval
The study was approved by the Institutional Review Board of BSMMU (approval number BSMMU/2018/480).
Supplemental material
Supplemental material for this article is available online.
References
Supplementary Material
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