In 2015, a Medical University at the Capital City of Bangladesh, Dhaka led a community palliative care project ‘Momotamoy (Compassionate) Korail’ for the elderly with support from the Worldwide Hospice Palliative Care Alliance (WHPCA) in a slum area. Later on, ‘Compassionate Korail’ child programme was initiated with a particular focus on providing palliative care for children with cancer in collaboration with further external support from World Child Cancer. During the situation analysis as the project unfolded, it became evident that there were few children with cancer in the community. Instead, it was clear that the need for palliative care in children was beyond cancer diagnoses. These included long-term chronic illnesses with huge symptom burden such as neurological disorders, birth asphyxia-related complications, and genetic disorders.
A 5-year-old girl with quadriplegic cerebral palsy and seizure disorder was identified within the community in 2016 and the team recognised that they needed to provide her with services to improve her quality of life even though the initial inclusion criteria was children affected with cancer. As the mission has broadened, a civic society charity organization ‘Palliative Care Society of Bangladesh’ has taken up the role to ensure continued services.
Korail Slum, located in the heart of Dhaka, is the largest slum in the country, housing an estimated 200,000 to 300,000 people of them 30,000-40,000 are children. The conditions in the slum are challenging, with the vast majority of households living in cramped, congested spaces. Typically, an entire family resides in a room as small as 7 feet by 9 feet, a space that barely accommodates basic living needs. This lack of space exacerbates the difficulties families face, particularly those caring for children with chronic illnesses or disabilities, where the need for medical care, support, and a clean, safe environment is even more pressing.
A comprehensive needs assessment revealed that many children in the area suffered from conditions that left them bedridden, unable to move and had uncontrolled seizures & dystonia, and reliant on their families for care. They needed medication for optimal control of their condition, most of which the families could not afford. In the initial days, the only evidence that they were alive was their chest movement during breathing and the eye blinking. They were stiff as ‘a plank or a rock’, as described by one of the healthcare workers.
In response, the project had to expand aiming to offer support for these children which included a few essential medicines, regular home care, food packs, physiotherapy, and medical consultations with paediatric doctors. Over the years, the programme has drawn the attention of the local people including the civil society and the initial sporadic interventions have gradually regularized and the children’s condition started to stabilise. The families have expressed that they found strength in finding ‘someone who cares.
By 2022, the team recognised that it was not enough to simply provide home care and medical support; the children needed more — particularly the opportunity to experience the outside world. The goal was to bring them into the sunlight, both literally and metaphorically. It was challenging to convince parents to bring out their child from their restricted worlds. Several meetings were held with parents, local volunteers, palliative care assistants (PCAs), project health care staff and the secretary of Palliative Care Society of Bangladesh (PCSB). This led to the creation of the Respite Care programme, called ANANDO (joy or happiness), which was launched in February 2023.
The ANANDO programme provides parents of long-term disabled children with the opportunity to take a break, while also giving children the chance to interact, play, and experience the world outside their homes. Every Saturday, around five children arrive at the Momotamoy (compassionate) Korail centre, where they participate in physiotherapy, play activities, and social interactions. The centre provides snacks and lunch, and trained volunteers and trained Palliative Care Assistant (PCAs), the field workers look after the children during this time. Parents have the option to stay at the centre or use the time as they deem fit.
Initially, the children were anxious in new surroundings. After a few months, both the children and their families began to appreciate the programme significantly. Siblings and children from different schools within the slum started interacting with the children, helping them feel more comfortable and engaged.
The project is run through microdonations from civil society and is managed by the Palliative Care Society of Bangladesh (PCSB), ensuring that it is sustainable and engages the community.
The Momotamoy (compassionate) Korail child project and Anando (joys) program have evolved from a cancer-focused palliative care initiative to a comprehensive programme supporting children with a wide range of life-limiting conditions, offering them a better quality of life and more joy.