When I was offered a place in the 2025 Children’s Palliative Care Leadership Programme, I was delighted. When it came to choosing a project, we were confused. What project could we possibly add to our Cancer Institute, Adyar—a 70-year-old charitable institution already dedicated to providing compassionate and comprehensive cancer care? You name the service; we have it all.
We excel in offering world-class medical care to over 15,000 new patients and 160,000 follow-ups annually, including more than 250 children and their families.
When we engaged in conversations – formal and informal within and outside our team, a significant gap began to emerge. There is a pressing need for structured support for families coping with one of life’s most heartbreaking experiences: the loss of a child. In our discussions with specialists across the institute, a common sentiment echoed—bereavement support for parents and siblings was long overdue.
Grief following the death of a child is one of the deepest forms of sorrow, leaving parents and siblings feeling isolated and emotionally shattered. Most of the existing bereavement support programmes are well-established in Western healthcare systems, which might not address the unique emotional and social needs of grieving families in India, especially for those from underprivileged community.
To address this crucial gap, we have set out to develop a “Culturally Sensitive Bereavement Support Programme”, offering grieving families an open and safe space to heal and connect.
With guidance from our mentors during the in-person session of the Children’s Palliative Care Leadership Programme in Hyderabad and unwavering institutional support, we arrived at a feasible structure and timeline for the project. The saying, ‘the team doesn’t choose the project; the project chooses the team’ was never truer than for the dedicated team that came together with expertise, purpose and above all, their compassion.
Current State:
- The initial questionnaire was developed based on inputs from our interdisciplinary team of oncologists, psycho-oncologists, and palliative care professionals. The content has been validated by an expert in the field. For face validation, the questionnaire was shared with a diverse group of experts: psychiatrist, paediatrician, paediatric palliative care physician, psycho-oncologist, paediatric oncologist, as well as specialists in surgical, and radiation oncology. We engaged patient advocates—including Mr. Neil Ranasinghe (UK), and Ms. Aparna Mittal and Ms. Shital Patel from PatientsEngage, Singapore—as well as parents who have been bereaved.
- Incorporating the feedback, we are further refining the questionnaire to ensure it is relevant and meaningful to the families we hope to support.
The immediate next steps are to translate the survey into regional language to pilot with bereaved families.
Our mission is that no one should have to grieve alone. Through this initiative, we hope to provide a bridge to healing and create a compassionate legacy that stands as a source of comfort for generations to come.
This is more than a project—it is a commitment to walk with families through their darkest times and remind them that even in sorrow, they are not alone.
“We’re all just walking each other home.” — Ram Dass
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