Developing a culturally relevant bereavement needs assessment tool (CANCOPE-PI) for caregivers of children with cancer in India: a participatory research approach.
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BACKGROUND: The loss of a child is the most devastating type of bereavement. Despite higher childhood mortality, there is a critical gap in bereavement research within low- and middle-income countries (LMICs). Hence there is a pressing need to develop a culturally and emotionally relevant need assessment tool for bereaved caregivers of children with cancer. Considering that bereaved caregivers and patient advocates hold immense context specific experiential knowledge, it is essential to integrate them while creating such a tool to ensure that the tool reflects real-world challenges, cultural sensitivities, and the psychosocial dimensions of grief in the Indian context. The aim of this study is to develop a culturally relevant bereavement needs assessment tool for caregivers of children with cancer in India, with active involvement of bereaved caregivers and patient advocates. METHODS: The tool was developed at a tertiary cancer center in south India through a four-phase iterative process involving multidisciplinary professionals, patient advocates, bereaved caregivers (predominantly parents) and public representatives: (1) Brainstorming and item generation, (2) Content validation, (3) Face validation, and (4) Translation. The questionnaire was shared, reviewed, and refined digitally during the development phase. This was part of a larger project to develop a bereavement support program for bereaved caregivers. RESULTS: A 26 item pool was refined to 15-item semi-quantitative tool, CANCOPE-PI (Culture-specific Assessment of Needs in Caregivers Of Pediatric patients who have Expired due to cancer, co-developed with Public Involvement) covering domains such as basic information, emotional care and mental health support, changes in relationships, daily life and functioning, coping techniques, support group, peer support, connecting with hospital, and remembrance practices through collaborative input from public contributors and subject experts. The tool was translated into Tamil by voluntary members of the public who were proficient in both English and Tamil, using standard forward–backward translation procedures. CONCLUSIONS: The CANCOPE-PI tool was developed, refined and translated through a participatory approach across all phases. The tool, which truly reflects the voices and experiences of caregivers of children with cancer in India, offers a culturally appropriate aid to assess their bereavement needs, and holds promise for guiding structured psychosocial interventions in pediatric palliative care and enhancing support for grieving families.