Celebration of Children’s Palliative Care In Bangladesh

Authors: Khadija Shopna, Zannat Ara, Megan Doherty

On March 1, 2021, World Child Cancer hosted a Celebration of Children’s Palliative Care in Bangladesh (CPCIB). This event was intended to celebrate 5 years of progress toward a vision of “Palliative care for every child who needs it”.

They brought together partners, supporters, donors and others championing children’s palliative care. They wanted to acknowledge the support from their donors and supporters as well as provide an opportunity for each organization who is doing Children’s Palliative Care in Bangladesh to tell what they have accomplished in the past 5 years and share their plans for the future.

The program was facilitated by Dr Zannat Ara and included inspiring speeches from:

Professor Nezamuddin Ahmad spoke about the first steps we have taken in children’s palliative care and encouraged us to envision a program of palliative care for all children with serious illnesses for the future.
Jon Rosser (CEO of World Child Cancer) spoke about the central importance of palliative care as part of the mission of World Child Cancer, which seeks to ensure access to care for all children with cancer
Rachel Hollis (Nurse Advisor for Children’s Cancer at the Leeds Hospitals NHS Trust in the United Kingdom and 2021 winner of the SIOP Lifetime Achievement Award), spoke about nurses are part of this critical work and the large need for children with cancer to access palliative care
Professor Julia Downing (Executive Director of the International Children’s Palliative Care Network), Ms. Joan Marston (co- founder, first Chair and CEO of the International Children’s Palliative Care Network, and now ICPCN Global Ambassador), and Dr. Megan Doherty (project lead for CPCIB) also shared their congratulations and encouragement for the future, linking the work in Bangladesh to the global children’s palliative care movement.

During the celebration, partners from health facilities which have been working actively in children’s palliative care, shared their experiences and success of the past years, including: (The links to each organization show their respective video clip)

Ashic, Foundation for childhood cancer
Bangabadhu Sheikh Mujib Medical University- Department of pediatric hematology and oncology and Centre for Palliative Care
Dhaka Medical College Hospital
Dhaka Shishu (Children’s) Hospital
Bangladesh Palliative and Supportive Care Foundation
Hospice Bangladesh
Compassionate Korail Project, of the Centre for Palliative Care (BSMMU) and Palliative Care Society of Bangladesh

Additional partner health organizations in the CPCIB include the National Institute of Cancer Research and Hospital and Fasiuddin Khan Research Foundation.

The celebration also included speeches from Senior Staff Nurses Rowsan Ara and Lailatul Ferdous, who have been leaders of the Nurse Leadership Program. They spoke about the program, which has developed a palliative care nursing training program, adapted and suitable to the local health care situation.

This program has successfully trained more than 400 nurses. A train the trainers program for the Nurse Leadership program has also been developed and implemented to strengthen and build capacity to deliver effective nurse training. A video of this is found here: https://youtu.be/F-o7IvLNB8c

The celebration was also enhanced by a slide show of children’s artwork and concluded with poetry readings from young persons who participated in the Compassionate Korail Project, a community-based children’s palliative care program. The videos of the poetry (https://youtu.be/VAvBcu9nwi0) and artwork can be found here (https://youtu.be/ZOdjZudqXjk).

Overview of the Children’s Palliative Care Initiative in Bangladesh (CPCIB)- a short video summary of the project can be found here: https://youtu.be/UeB6eyuHuyU

Children’s Palliative Care Initiative in Bangladesh (CPCIB) started 5 years ago, with the support of World Child Cancer. Over the past 5 years the program has been successful at building a network of health facilities and health care providers leading and championing palliative care.

Need for Palliative Care

Each year there are more than 6000 children who develop cancer in Bangladesh and many of them will need palliative care. Children with other serious and life-limiting conditions also need palliative care, including those with cerebral palsy, genetic conditions, severe congenital health disease, serious neonatal conditions, congenital anomalies, and other diseases. There are an estimated 28 000 children

Barriers to Children’s Palliative Care

When we first started, we identified 3 significant barriers preventing children from accessing palliative care. First there was poor public awareness about the importance of palliative care and how it could help children with cancer. Secondly there was a lack of knowledge and skills to provide palliative care among health care professionals and thirdly there were very few palliative care services available at local health care facilities.

Activities of CPCIB

Since 2016, our initiative has developed and implemented a number of programs to address these barriers and improve access to essential palliative care for children.

Raising Awareness

To raise awareness about palliative care, CPCIB supported awareness seminars for doctors, nurses and other health care professionals at hospitals where children with cancer receive treatment. More than 1400 health care professionals participated in these programs. Once health care professionals were sensitized to palliative care, they were provided with more in-depth training to develop their knowledge and skills.

Pediatric Palliative Care Training

Training programs were conducted with more than 2000 health care professionals, including doctors, nurses, pharmacists, palliative care assistants, and counsellors, who participated in palliative care training programs. These programs were focused on training health care providers with the knowledge and skills to be comfortable and capable of providing basic palliative care for their patients. Local palliative care experts and international faculty including trainers from India, South Africa, New Zealand, Portugal, Singapore, the United States the United Kingdom and Canada came together to deliver this training.

Ongoing mentorship following training was provided through Project ECHO, a virtual learning and mentoring platform. Participants were able to join case discussions and interactive teaching sessions with participants from across India and Bangladesh to share and discuss challenges in children’s palliative care.

Advanced Training Courses

Advanced training programs and leadership development was provided to more than 30 health care providers, who received support to attend programs in India, including the Fellowship in Palliative Care in Kerala and an advanced certificate course in pediatric palliative care in Hyderabad. Participants used these advanced skills to develop new palliative care programs in Bangladesh and provide leadership and mentoring support for the next generation of palliative care providers in Bangladesh.

Nurse Leadership Program

Recognizing the important role that nurses play in the health care system, particularly in providing palliative care, the children’s palliative care initiative included a specialized nurse training program. This program involved developing a palliative care nursing curriculum, as well as a train-the-trainer program which supported nurses to become palliative care trainers. More than 400 nurses participated in this program.

Supports for Children and Families

We also supported parents’ meetings where parents could receive important information about cancer, pain management and supportive care from a trusted member of their child’s health care team. Additionally, welcome packs, containing toys, drawing materials and practical personal care items were distributed to children admitted to pediatric cancer wards. Play and artistic expression are important activities to support children emotionally when they are facing a serious illness such as cancer, so art and drawing competitions were organized as well as other supportive activities for children.

Clinical Programs

Through the awareness and education activities of the first few years of the children’s palliative care initiative, the program was then able to then able to support the development of 6 new palliative care services for children as well as integration of palliative care into children’s cancer treatment wards at hospitals where children with cancer are treated. These programs include inpatient palliative care programs as well as community-based programs.

Future Plans

We are now excited to develop our vision for 2021 and beyond. The Children’s Palliative Care Initiative will continue, as we plan to continue to develop and expand pediatric palliative care in Bangladesh. We have developed a professional network where we can share educational and clinical resources, develop best practices and standards for palliative care and disseminate knowledge of palliative care to others both in Bangladesh, across South Asia and around the world.

Acknowledgements:

We want to thank all of the children and families, they have given us the opportunity to help treat their pain and other symptoms, we want to honor the lives of these children and thank them for what they have taught us, and the trust that they have placed in us.

Working group members for CPCIB (past and present):

Afzal Husain Chowdhury, Amirul Morshed Khashru, Anwarul Karim, Farzana Khan, Khadija Shapna, Lailatul Ferdous, Lubna Mariam, Mamtaz Begum, Marufa Khanom, Megan Doherty, Momena Begum, Mostofa Kamal Chowdhury, Najimur Rahman, Nezamuddin Ahmed, Nujhat Sohani Nanda, Rizwana Houssain, Rowsan Ara, Rumana Dowla, Salma Chowdhury, Selim Uzzaman, Shahinur Kabir, Shoheb Khan, Tahmina Rahman, Zannat Ara, and Zohora Jameela Khan.

Addition supporters and partners: