Children’s and family caregivers’ voices in deafblindness research: A protocol for an international qualitative study supporting the development of ICF Core Sets
Background: Children and adolescents with deafblindness experience unique challenges that are often insufficiently represented in existing disability frameworks. Although children have the right to express their views on matters affecting them, their voices remain underrepresented in disability research. Capturing the perspectives of children and adolescents with deafblindness, alongside those of their caregivers, is essential to better understand functioning, participation, and environmental support across diverse contexts worldwide.
Aim: This study centres the lived experiences and perspectives of children and adolescents with deafblindness and their caregivers to identify key aspects of functioning, participation, and environmental factors relevant to the development of the International Classification of Functioning, Disability and Health (ICF) Core Sets for deafblindness. ICF Core Sets are standardised, evidence-based selections of ICF categories that support improved assessment, service coordination, rehabilitation, and policy development.
Method/approach: This study involves semi-structured interviews and focus groups with children/adolescents living with deafblindness and parents/caregivers of children with deafblindness using ICF Core Set-based exploratory questions. Participants will be recruited across the six regions of the World Health Organization to ensure global representation and diversity in deafblindness profiles, aetiologies, and communication profiles. Ethical approval will be obtained before initiating the study and participant recruitment.
Results/findings: As this study is currently in the planning stage, no findings are yet available. The study will operationalise child participation through inclusive, accessible, and flexible data collection strategies, including adapted communication approaches, rapport-building, and the use of age-appropriate and multimodal methods. Ethical considerations will prioritise informed consent/assent processes, accessibility of participation, safeguarding, and the creation of a supportive environment to ensure meaningful and voluntary engagement of children and adolescents living with deafblindness.
Conclusion: This study will contribute critical international perspectives to the development of ICF Core Sets for deafblindness while emphasising the importance of conducting research with children rather than solely about them. Findings will support the ICF as a more inclusive disability framework, rehabilitation practices, and policies that reflect the priorities and lived experiences of children and families.
Implications for children and families: Your voice and lived experiences can help shape future services, supports, and disability frameworks so they better reflect what matters to children and families living with deafblindness.
Implications for practitioners: You can gain insights from children’s and families’ perspectives to guide more meaningful, person-centred assessment, rehabilitation, and support planning for children and youth living with deafblindness.
Funding: Shirley Dumassais is supported by doctoral fellowships from the Canadian Institutes of Health Research, the Centre for Interdisciplinary Research in Rehabilitation of Greater Montréal, the Réseau de Recherche en Santé des Populations du Québec, the Vision Science Research Network, and the Université de Montréal.
Keywords: deafblindness, lived experiences, international qualitative research, disability framework, International Classification of Functioning, Disability and Health
This presentation relates to the following United Nations Sustainable Development Goals: