ArticleResearch involvement and engagement2026
Developing a culturally relevant bereavement needs assessment tool (CANCOPE-PI) for caregivers of children with cancer in India: a participatory research approach.
Article in Research involvement and engagement, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe 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.
methodsThe 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.
resultsA 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.
conclusionsThe 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.
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.