ABSTRACT
Participation is a human right and a key component of health and development in children with disabilities. Inclusive communities and environments facilitate participation. Currently, there are no measures that comprehensively assess the inclusion of children with disabilities in Canadian communities. This study aims to establish the content validity and improve the clarity of the Child Community Health Inclusion Index (CHILD-CHII). A modified e-Delphi technique was conducted. A purposeful convenience sample of community stakeholders was recruited. The importance and clarity of each item were rated on a Likert scale in two separate rounds. Depending on consensus, items were retained, modified, or omitted. A total of 48 participants completed the first round of the Delphi technique and 38 completed the second. In total, 106 items were presented of which 101 items were rated important with high consensus and were retained. A total of 17 items were modified for clarity and presented in the second round. In the second round, all 17 modified items were deemed clearer. The CHILD-CHII and its validated content assess aspects of the community that align with social determinants of health. Measuring these aspects may identify barriers to inclusion and inform the development of interventions, health strategies, and policies to improve community inclusion and child health.
Acknowledgments
The authors would like to thank all the stakeholders and experts who contributed to the study.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Geolocation information
The CHILD-CHII has been developed for the Canadian pediatric population. Canada.
Supplementary material
Supplemental data for this article can be accessed here
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Funding
Notes on contributors
Paul Yejong Yoo
Paul Yejong Yoo, MSc., OT, is a doctoral candidate in Rehabilitation Science at McGill University. His research focuses on the promotion and measurement of health and inclusion of children with disabilities through contextual factors and systems-level interventions, including policy. He is a practicing occupational therapist working with individuals with intellectual disabilities, performing evaluations and treatments to facilitate daily functioning.
Annette Majnemer
Annette Majnemer, OT, PhD, is Professor at the School of Physical & Occupational Therapy, Vice Dean Education in the Faculty of Medicine and Health Sciences, McGill University, a Senior Scientist at the Research Institute-McGill University Health Centre and a member of Montreal’s Centre for Interdisciplinary Research in Rehabilitation. Her research focuses on early identification strategies for children at high-risk for disability and factors that influence outcomes. She leads CHILD-BRIGHT, a patient-oriented research network focused on children with brain-based disabilities.
Robert Wilton
Robert Wilton, PhD, is a Professor of Social Geography and Associate Director of the School of Earth, Environment & Society at McMaster University. His research is broadly concerned with the social geographies of disabled people, and the barriers they face to social inclusion and participation. Rob is the co-editor of ‘Towards Enabling Geographies’ (Ashgate) and ‘Using Space’ (Routledge). He has served as an editor for the journal Social and Cultural Geography.
Sara Ahmed
Sara Ahmed, PT, PhD, is a Professor in the School of Physical and Occupational Therapy, McGill University. She leads a research program in person-centred health informatics research and the scientific director of the CFI BRILLIANT project (https://www.brilliant-cfi.ca). She conducts research aimed at improving participation and health-related quality of life for individuals with chronic disease and disabilities. Her research includes studies that: 1) Address the challenges of using patient-reported outcomes (e.g. health-related quality of life, self-efficacy), and the use of advanced psychometric approaches for improving the precision and efficiency of outcome evaluations; 2) Develop and evaluate the impact of digital health solutions integrated into electronic health records, and 3) Knowledge exchange and transfer related to best practices for transitions in care.
Keiko Shikako
Keiko Shikako, OT, PhD, is the Canada Research Chair in Childhood Disabilities: Participation and Knowledge Translation, and associate professor at McGill University School of Physical and Occupational Therapy. She has conducted research in the past 17 years on aspects related to community inclusion, accessibility, participation in leisure and disability rights. Her research focuses on the promotion of healthy living and the human rights of children with disabilities AND knowledge translation science and practice. She is the lead of several national research network strategies, has worked with Canadian Government and Civil Society Organizations in the reporting of the United Nations Convention on the Rights of Persons with Disabilities and other research projects. She is the co-creator of the Jooay App (jooay.com), a mobile App locating adapted and inclusive leisure activities and the lead in projects related to community inclusion and physical activity for children with disabilities and families.