Abstract
The World Health Organization's International Classification of Functioning, Disability and Health recognizes that environmental factors impact well-being and life participation for children with disabilities. A primary environment in which children grow and learn is the family. The importance of family has long been recognized in family-centered practice and family-centered research. Although family-centered services and research have been critically explored, the concept of family has received less critical attention in rehabilitation literature. The family construct is due for an updated conceptualization with careful consideration of the implications for childhood disability rehabilitation practice and research. Interrogating the family construct asks questions such as: who is included as a part of the family? Which family structures are prioritized and valued? What is the potential harm when some families are ignored or underrepresented in childhood disability practice and research? What implications could a modern rethinking of the concept of family have on the future of childhood rehabilitation practice and research? This perspective article raises these critical questions from the authors' perspectives as parents of children with disabilities, child focused rehabilitation professionals, and researchers that focus on service delivery in children's rehabilitation and family engagement in research. A critical reflection is presented, focused on how the construct of family affects children's rehabilitation practice and research, integrating concepts of equity, inclusion and human rights. Practical suggestions for children's rehabilitation service providers and researchers are provided to aid in inclusive practices, critical reflection, and advocacy.
Highlights
As parents (JL, RM), practitioners (MP, MR), and researchers (MP, MR) we acknowledge that children grow and develop in the context of their family
Is the most immediate and powerful influence on a child’s formative years that affects their lifelong trajectory [1]. As such we focus on the family as a part of care and generally recognize family-centered service as a preferred framework to guide service delivery for children with disabilities [2]
The WHO-ICF highlights three environmental factors that are relevant to this discussion of family: support and relationships, attitudes, and services, systems, and policies [30]
Summary
As parents (JL, RM), practitioners (MP, MR), and researchers (MP, MR) we acknowledge that children grow and develop in the context of their family. 2. If your research is about families of children with disabilities consider whether your question is inclusive to all family members (e.g., siblings, grandparents) and family structures (e.g., kinship communities, co-parents who do not live together) and justify your decisions. If researchers do not embrace a holistic definition of family that is inclusive of the people recognized as family in the lives of children with disabilities, there is a risk of excluding people from research and reinforcing a narrow understanding of family life This limited evidence-base will make it challenging to draw from the study findings for use in clinical practice with individuals beyond the client and their mother and father. There will be missed opportunities to understand and reinforce the value and strength in diverse families
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