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.
Supplementary Information
The online version contains supplementary material available at 10.1186/s40900-026-00886-5.
Plain language summary
Losing a child to cancer is one of the most devastating experiences a family can go through. In India, bereavement support services for such families are limited, informal, often not designed with cultural or emotional sensitivity. As a result, the needs of caregivers after their child’s death are poorly understood, and health services have little guidance on how to support them. This study aimed to create a simple and culturally relevant tool to understand what caregivers need during their grief journey. Hence, to achieve this, we worked with caregivers and patient advocates, to partner with us as co-researchers and co-designers of the tool, rather than just be survey respondents. They reviewed every stage of the questionnaire, shared their lived experiences, and suggested meaningful changes based on what real families go through after the death of a child. The result is CANCOPE-PI, a 15-item questionnaire that explores different areas of need, such as emotional support, practical help, sibling support, cultural and spiritual needs, communication with healthcare teams, and preferred types and timing of bereavement support. The tool was shared digitally to make it easy to complete and analyse. Feedback from them played a significant role, in refining the questions to ensure sensitivity and relevance, by reflecting their real-life experiences rather than assumptions. We hope that the CANCOPE-PI tool will help hospitals, palliative care teams, and organisations identify gaps in bereavement services and design better, compassionate, culturally appropriate support for families across India.
Supplementary Information
The online version contains supplementary material available at 10.1186/s40900-026-00886-5.
Background
The loss of a child is considered by many to be the most devastating type of bereavement [1]. Childhood mortality is higher in low-and-middle-income countries (LMICs); however, little is known regarding bereavement support or interventions for parents in LMICs [2]. Reviews of interventions offered to parents and siblings who lost a child (0–18 years old) have been conducted in high-income countries (HICs) [3–8], but limited findings from LMICs where the needs of bereaved caregivers may be different from that in high-income countries. Therefore, there is a pressing need to develop a culturally and emotionally relevant assessment tool for bereaved caregivers of children with cancer which can be used to inform future bereavement support interventions that could help them navigate through their grief. Engaging caregivers, patient advocates and public in this process ensures that the tool reflects lived experiences and addresses culturally relevant needs. We, therefore, embarked on a project to develop a bereavement support program for caregivers of children with cancer in India. Herein, we report the first part of the project which was aimed at developing a culturally relevant bereavement needs assessment tool by integrating active public involvement.
Methods
Setting
This study was undertaken at Cancer Institute (WIA), which is a tertiary cancer centre in south India. The hospital is a charitable institution that provides comprehensive cancer care to all, especially for the poor and the under-privileged, including children through inpatient, outpatient, hospice, and home-based services. This initiative was conceptualized as part of a leadership project undertaken by 2025 Children’s Palliative Care Leadership Program. A focus group was formed within the Cancer Institute (WIA), Adyar with members from various departments of oncology, pediatric oncology, palliative care, psycho-oncology. Ethics Committee waiver for the study was granted by the hospital Institutional Ethics Committee (IEC) as the study doesn’t involve direct patient involvement. Caregivers and patient advocates were involved as public contributors (patient and public involvement, PPI) in the co-design and refinement of the tool. No personal or sensitive data were collected for research purposes during the development phase. Future pilot testing or survey administration involving bereaved caregivers as research participants, will involve informed consent and ethics approval as applicable. Hence the institutional ethics committee issued a No Objection Certificate (NOC) for the conduct of the study. Participation from the reviewers was voluntary and hence no compensation was provided.
Designing
The survey questionnaire tool was designed using four iterative phases: Item generation, Content validation, Face validation, and Translation [9] which were conducted sequentially between March 2025 and April 2025 with iterative refinement between phases. The methodological phases were conducted sequentially, while public and patient involvement occurred continuously and iteratively throughout these phases. The initial version of the bereavement needs assessment questionnaire, which had 26 questions, including three closed-ended questions, was developed by the palliative care team, comprising physicians and psychologists, at the Cancer Institute (WIA), Adyar. This was then circulated to the focus group of 20 members formed within the institution, specialised in oncology, pediatrics, and psychology for content validation. We conducted content validation prior to face validation to ensure conceptual relevance, domain coverage and the adequacy of the items representing the bereavement needs before refining the clarity, tone, and acceptability of the items. Subsequently, the 26-item underwent face validation through an iterative feedback process involving seven external domain experts—a psychiatrist, a psycho-oncologist, a pediatrician, a pediatric oncologist, a surgical oncologist, a pediatric palliative care physician, and a radiation oncologist.
Co-design approach
In parallel, the 26-item questionnaire was shared with four patient advocates, three individuals with lived experiences of child loss, and two members of the general public (total n = 9). These caregivers with the lived experience of having lost their child were identified through patient advocates’ network. Their willingness and voluntary agreement to participate and co-design this tool helped to ensure that the developed tool is applicable and beneficial to the real situation. Their feedback was obtained iteratively at each stage of refinement. A patient advocate (A.M.) who is also co-author of this paper was involved in all stages of this project as a member of the research team from early item review in March 2025 through final refinement and translation in April 2025—ensuring continuous public involvement rather than one-time consultation. The CANCOPE-PI tool was shared as a Google Forms and Google Documents through email and WhatsApp to ensure easy completion and efficient data analysis. Thus, while the methodological phases progressed sequentially, public and patient involvement occurred longitudinally across all stages of tool development.
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 to ensure cultural and linguistic accuracy in Tamil, the regional language of Tamil Nadu, where the institution is located. Regular meetings were held both in-person and online to ensure clarity till the final items were clear, comprehensive and relevant. This manuscript was prepared in line with the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) reporting guidelines on patient and public involvement in research [10]. The GRIPP2 short-form checklist is provided in Additional File 1.
Planned pilot administration
Digital administration was used during the tool development to enable coordination between various stakeholders located at different geographical locations. However, for pilot testing and survey administration, it will be guided by the preference and convenience of bereaved families.
The tool may be administered through multiple modes—online via Google Forms or in person or by telephone. Paper-based responses will be collected from the families who are uncomfortable with the digital mode. The data will be entered into a secured google forms with access only to restricted investigators to ensure structured capture, time-stamping, audit trail, and confidentiality. For assisted administration, informed consent will be obtained prior to participation, and investigators will record responses verbatim without interpretation.
Results
The 15-item tool CANCOPE-PI (Culture-specific Assessment of Needs in Caregivers Of Pediatric patients who have Expired due to cancer, co-developed with Public Involvement), was reduced from 26 to 15 questions. The overall tool was perceived as relevant and well-constructed by all the experts. The idea of developing a tool to assess the culture specific needs of bereaved caregivers was appreciated. During the validation process, reviewers confirmed the relevance, clarity, sensitivity, and completeness of the questions.
Significant inputs included suggestions to convert all questions with options as answers to minimize manual errors, easier completion, and analysis, which was not incorporated, as public and patient involvement (PPI) wanted to express that open ended questions are necessary for free emotional expression which was agreed by others. Feedback also emphasized the need to include financial constraints in the needs assessment, which was incorporated into the final tool. Based on the inputs provided, the final translated tool had 2 open-ended questions to allow caregivers to share narrative reflections and unique grieving experiences in their own words. It also had 13 closed-ended questions for structured data collection.
The feedback from the patient advocates and caregivers included use simple language, improve tone, provide clearer instructions, merge similar questions, place important questions at the beginning, and include options for open comments. Also, emphasis on the need to ensure that the caregivers feel comfortable responding to the survey. As a result, a clear instruction sheet was provided at the beginning of the tool to help them navigate the entire process including comprehensive instructions outlining its goal, guaranteeing confidentiality, and mentioning the availability of psychological support in case they experienced distress. The first part of the questionnaire, which primarily included the demographic and background information of the child and the caregivers, was designed to be prefilled by the hospital team in order to reduce the time to complete the questionnaire. The questions were reworded to maintain a neutral tone and avoid emotional triggers. Everyone suggested reducing the length of the tool, the final tool was shortened to 15 questions.
Meaningful engagement of patients advocates and individuals with lived experience helped refine the flow of questions, beginning with more approachable topics and gradually transitioning to emotionally sensitive items as well as improving language familiarity, tone, and appropriateness. Some comments from the caregivers and patient advocates while designing the tool are provided in Tables 1 and 2 while changes made to the tool based on their valuable inputs are summarised in Table 3. A comprehensive overview of four-phase development of CANCOPE-PI using participatory research given in Table 4.
Table 1.
Feedback from bereaved parents (Verbatim Quotes) while developing CANCOPE-PI
| “While there should not be too many questions, sufficient time should be allowed for participants to be able to say and suggest everything they want to.” |
| “Any parent’s priority will be to ensure that any bereaved siblings’ needs are seen to and managed before they even think of their own grief and needs.” |
| “The timing of the questionnaire in the participant’s grief process is crucial… our needs as both individuals and as a family were very different at different times.” |
| “About 9 months in, I realised that I needed, and I found, individual grief counselling, and after about a year, our whole family realised that contact and counselling as parents, as a family group and with other families was what was needed at that time”. |
| “Family therapy was great for us”. |
| “I don’t like this question, I’m afraid. I think it would trigger me even many years on. I think it can be removed.” |
| “Speaking to other bereaved parents or families can be a true life saver… Only other bereaved parents, siblings and families can truly understand what we are going through. |
Table 2.
Feedback from patient advocates (Verbatim Quotes) while developing CANCOPE-PI
| “this survey could be distressing (to the parents) so need to offer support (to them).” |
| “Maybe shortening it isn’t critical… I might reorder it and put the most important questions at the beginning.” |
| “If the survey takes a long time… and something happens… and they can’t complete it, it would be a shame if they hadn’t answered the key questions.” |
| “A lot of people want to know the outcome… Maybe in a year you can say ‘the bereavement programme is in place/nearly done/not going to happen due to lack of funding’.” |
| “Perhaps you can offer to keep them informed of the project. This is different from actually using the service.” |
| “But we would like to be sure that it is not upsetting or triggering for them (bereaved parents)”. |
| “People get asked to complete surveys all the time… survey uptake can be very low… If someone opens it and sees a lot of questions, they put it off and it never gets done.” |
| “Is every question essential?… Could you shorten it to 15 or maybe 10 questions?” |
| “Use as many dropdown lists rather than free text fields… cleaning up data is very time consuming.” |
| “It is generally recommended that you start with some more approachable questions… specific scripting/introduction language… can be helpful.” |
Table 3.
Highlight of the Resulted Changes while developing CANCOPE-PI
| • Shortened survey (26 to 15 items). |
|
• Reframed distressing terms (“loss” instead of “death”, “passing”) • Added introductory script acknowledging sensitivity. • Reordered questions (most important and approachable first). • Added open-ended items (honouring the child’s memory). |
| • Introduced domains: siblings, physical health, panic/anxiety, coping, relationships. |
|
• Added introduction on purpose, confidentiality, and support availability. Enabled pause/resume/skip/ stop options. |
Table 4.
Overview of four-phase development of CANCOPE-PI using participatory research
| Phase | Participants involved in review | Key activities | Outputs |
|---|---|---|---|
| 1. Brainstorming & item generation | Palliative care team involving psychologists and palliative care physicians (4) at Cancer Institute (WIA) - Adyar | Item generation and domain coverage | 26-item questionnaire drafted |
| 2. Content validation | Focus group of 20 multidisciplinary team members from the hospital involving from oncology, pediatric oncology, dietician, palliative care, and psycho-oncology at Cancer Institute (WIA) - Adyar | Clarity, relevance, cultural sensitivity, completeness assessment | Revised and reduced items |
| 3. Face validation |
a. External domain experts (7) in oncology and psycho-oncology b. Patients advocates (4), and bereaved parents (3) |
Order of questions, check for redundancy, sensitivity, appropriateness | Items removed, merged, tone neutralization, adding sibling and financial considerations |
| 4. Translation | Two bilingual public representatives proficient in English–Tamil | Forward–backward translation, linguistic and emotional nuance calibration | 15 item tool with 13 closed-ended and 2 open ended questions, including instructions with average completion < 10 min |
CANCOPE-PI covered the 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. The average completion time was estimated to be under 10 min. during mock completion by clinicians and public contributors during the development phase.
Discussion
This study represents the first step towards designing a culturally relevant intervention program for providing bereavement support to family caregivers of children who die of cancer in India and demonstrates the value of involving caregivers and patient advocates in designing a tool to assess the needs of bereaved caregivers. The support needs of bereaved parents have been scarcely studied in low- and middle-income countries [11], and almost no empirical work has examined these needs within the Indian context, where bereavement services are limited, informal, and largely undocumented leaving a gap in LMIC bereavement research.
We believe the 15-item CANCOPE-PI tool developed because of this study is a contextually relevant and ethically grounded, publicly informed tool designed for use in an LMIC pediatric oncology setting that can help to assess the needs and inform the bereavement support that is required. Engaging bereaved caregivers, patient advocates and members of the public in the design process ensured cultural sensitivity and relevance of the CANCOPE-PI tool. Their insights led to major changes in both survey content and tone. Based on the iterative feedback process and shared decision making, we refined the tool to reflect cultural resonance, contextual richness and usability for the targeted population [12].
During face validation, one expert recommended that the team involve at least two patient advocates to validate the questions. This comment reinforced the study team’s direction toward PPI. However, the study team had difficulty in identifying bereaved caregivers who could contribute their lived experiences that could strengthen emotional relevance, due to cultural hesitancy. This barrier was mitigated when patient advocates referred caregivers, enabling their inclusion to participate as validators of the tool.
Prior research also has shown that patient advocates strengthen research by enhancing outreach to diverse communities, serving as authentic and trusted voices from communities, and promoting engagement with stakeholders to accelerate personal, familial, community health and research goals [13]. In the final stages of the study, the patient advocate A.M. became a partner who played a significant role in bringing all perspectives together and was fully involved in the entire development process with continuous engagement [14].
Public and patient involvement in research is predominantly concentrated in high-income, English-speaking countries, raising concerns about its applicability in lower-income and non-English-speaking settings [15]. In contrast, the aim of this study itself was to develop a culturally relevant tool with a participatory approach, integrating patient advocates and caregivers at every phase. This participatory approach demonstrates the feasibility and value of meaningful public involvement in culturally and emotionally sensitive research in LMICs. Such an approach enabled us to shape the length, domains, language, and sensitive wording of the CANCOPE-PI tool [16]. Based on the positive experience of involving the caregivers and patient advocates in designing the CANCOPE-PI tool, we have subsequently engaged bereaved parent representatives as public partners and co-researchers in shaping a culturally relevant bereavement support programme to ensure that the resulting intervention was not only evidence-informed but also grounded in lived experience. This makes the program more empathetic, practical, and contextually appropriate which is very important in palliative and end of life research [17]. There has been an increasing emphasis in recent years on the need for meaningful public involvement in all stages of the research cycle from shaping the health and social science research agenda to influencing what, why and how research is conducted and disseminated [18–20]. Ensuring meaningful involvement of patients and public involvement (PPI) (here bereaved caregivers and patient advocates) in every aspect of research adds valuable insights, brings meaningful outcomes that could meet their expectations, needs and preferences and identifies issues and details that researchers are unlikely to be aware of [21–22].
The study is first of its kind in India focussing specifically on culture specific need assessment of caregivers, from a highly under-researched population. The strength of this study lies in the strong public and patient involvement, where caregivers, patient advocates, healthcare providers, and public were meaningfully involved as co-designers, not just respondents. The tool included combined closed and open-ended questions to ensure capturing quantitative as well as qualitative insights. This tool can be replicated and used for other Indian states with minimal adaptation holding potential for integration into bereavement clinics or home-based palliative programs. However, there are also limitations while we interpret the findings. India is a culturally, socially, economically, religiously diverse country. The bereavement experiences also vary significantly across these population. While sincere efforts are made to incorporate diverse perspectives through patient and public involvement, this study represents the initial phase of tool development and was conducted within a single-centre setting, limiting generalisability. The tool was translated in only one regional language, which reduces participation from people of other linguistic backgrounds and hence limits reach. However, we believe that this study will set the stage for a wider collaborative study in the future which will be more representative. Additionally, not involving PPI during the initial item generation, may have limited the diversity of perspectives considered at the outset. There is also the possibility of response biases due to digital survey methods. The planned pilot administration across families from varied backgrounds will provide further insight into contextual nuances and inform refinement of the tool. Subsequent development of a structured bereavement support programme will be guided by findings from broader implementation across centres serving populations with similar cultural realities.
Conclusions
The CANCOPE-PI tool is a socio-culturally relevant, easy to use and publicly informed tool for assessing the bereavement needs of caregivers of children who die of cancer and provides a model for culturally grounded bereavement support interventions. Involving caregivers and patient advocates and the public in co-designing this tool brought in authenticity and understanding of the end-user needs, reinforcing the value of embedding lived experience in participatory research.
Supplementary Information
Below is the link to the electronic supplementary material.
Acknowledgements
We would like to express our heartfelt gratitude to the bereaved parents who participated in this study as well as patient advocates Neil Ranasinghe, Dr. Shital Patel, and Dr. Dylan Graetz for their invaluable contributions. Their insights and lived experiences strengthened the relevance and quality of this study. This study would not have been possible without their contributions.We would like to thank the mentors of the 2025 Children’s Palliative Care Leadership Program (This program brings together and empower the next generation of palliative care leaders and champions from South and Southeast Asia. This is a collaboration hosted by TWCC’s Sunflower Children’s Network and the Hyderabad Centre for Palliative Care and supported by Cipla Foundation, St Jude Global Palliative Care, Pain Relief and Palliative Care Society, Global Treehouse Foundation, ICPCN (International Children’s Palliative Care Network), and Canuck Place Children’s Hospice) for their immense support, and a special thanks to Dr. Justin Nathaniel Baker, Dr. Mostofa Kamal Chowdhury, Dr. Spandana Rayala, and Dr. Megan Doherty for their valuable guidance and support throughout this work. We express our sincere thanks to Dr. Sabitha Binu Ninan, Dr. Latha M.S, Dr. D. Kayathri, Dr. Rammya K, Dr. Priya Iyer, Dr. Daniel Raj Joseph Thangasamy, Vidhya Gopalakrishnan, Divya Rajkumar, Michelle Normen, Priya Rajendran, Dr. Jefrilla Nancy Joseph, Dr. Rathipriya Sankaran, Dr. Prasanth Srinivasan, Dr. Balaji Thiruvengadam Konthandan, Srividhya Arunachalam MS, Rohini R, Thirumal Prashanth, Ranjith J, G. Kumaresan, Dr. Gargi Das for their valuable contribution in designing this tool.
Abbreviations
- CANCOPE-PI
Culture-specific Assessment of Needs in Caregivers Of Pediatric patients who have Expired due to cancer co-developed with Public Involvement
- GRIPP2
Guidance for Reporting Involvement of Patients and the Public
- PPI
Patient and public involvement
- LMIC
Low-or middle-income countries
- HIC
High-income countries
Author contributions
V.S. contributed to the conceptualization, methodology, project administration, data curation, funding acquisition, writing—original draft, and writing—review and editing. A.S.R. contributed to conceptualization, methodology, supervision, writing—review and editing. A.M. contributed to conceptualization, methodology, supervision, and writing—review and editing, V.V.M contributed to conceptualization, project administration and supervision, V.R contributed to conceptualization, supervision, writing—review and editing, S.V contributed to conceptualization, supervision, writing—review and editing. All Authors have read and consented to publish the manuscript.
Funding
The development of this tool was recognised as strategically important and funded by Cipla Foundation, as a part of the Children’s Palliative Care Leadership Program.
Data availability
No datasets were generated or analysed during the current study.
Declarations
Ethical approval
Ethics Committee waiver for the study was granted by the hospital Institutional Ethics Committee (IEC) as the study doesn’t involve direct patient involvement and no ethical or scientific concerns involved and the rights of the participants are not violated. Hence the institutional ethics committee issued a No Objection Certificate (NOC) for the conduct of the study.
Competing interests
Aparna Mittal is co-editor in chief of Research Involvement and Engagement, who handled this manuscript for Research Involvement and Engagement. The author had no involvement in the editorial decision-making process for this manuscript. No other author has declared a competing interest.
Footnotes
Publisher’s note
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Contributor Information
Vinutha Suresh, Email: Vinutha.suresh@gmail.com.
Ramakrishnan Ayloor Seshadri, Email: Ram_a_s@yahoo.com.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
No datasets were generated or analysed during the current study.