Reconceptualizing the Family to Improve Inclusion in Childhood Disability Research and Practice

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.

Family Perspectives on In-Home Multimodal Longitudinal Data Collection for Children Who Function Across the Developmental Spectrum

“…Further research is needed to determine how to implement these suggestions while still collecting usable, valid data, although research examining the use of smartphone-collected parental reports of behavior in children with autism suggested that data collection may be abbreviated without compromising study integrity. 20 Involvement of multiple caregivers/family members was also cited as key, mirroring recent work by Phoenix et al, 21 advocating for the representation of diverse family structures in research, and recognizing that caregiving roles can be uniquely dispersed in the context of supporting children with disabilities. Reciprocity describes the mutual benefit to both researchers and participants that results from effective community-based research.…”

Caregiver perspectives on the long-lasting impact of the COVID-19 pandemic on children with cerebral palsy in Johannesburg, South Africa

“…This decision was informed by the recognition of the diverse roles caregivers play in supporting children with CP, including grandparents and fathers, whose perspectives are often under-represented in disability research, particularly in the South African context. 9 10 By intentionally including multiple caregivers, such as grandmothers and fathers, the study aimed to address this limitation and capture a more diverse range of experiences. Therefore, following the initial caregiver interview, participants were asked if any other family caregiver would like to participate in the interviews.…”

Phenomenology of the inclusive potential of the family as a factor in the socialization of children with disabilities

“…В качестве показателей успешности данного сотрудничества следует рассмотреть такие параметры как: положительная динамика развития ребенка; положительная динамика развития самих родителей и семейных отношений, качество жизни семьи, удовлетворенность родителей; включенность членов семьи в различные социальные активности и деятельность тематических социальных групп; уровень сотрудничества родителей и профессионалов; динамика повышения родительской компетентности в вопросах обучения и воспитания детей с ОВЗ [27]. Семья может рассматриваться не только как фактор благоприятного развития, но и как потенциальный вред, если семья игнорирует предлагаемые стратегии сопровождения и не ориентируется в теории и практике комплексной помощи лицам с ОВЗ и инвалидностью [28]. Деятельностный аспект реализации инклюзивного потенциала семьи будет раскрываться через понимание того, что именно, как и с каким уровнем систематичности и результативности делает семья для успешного развития, социализации и интеграции ребенка с ОВЗ в различные социокультурные пространства и сферы [29].…”

“…Как подчеркивают российские [12] и зарубежные ученые [28], существует необходимость проработки ключевых дефиниций и выравнивания терминологического поля, изначально сформированного на пересечении различных областей научных знаний [29]. На основе дифференциации терминологического ряда обсуждаемой проблемы в исследовании было сформулировано и обосновано авторское определение понятия «инклюзивный потенциал семей, воспитывающих детей ОВЗ», позволяющего подчеркнуть принципиальность синтеза внешних и внутренних ресурсов, и сместить акценты на функциональную роль семьи и аспекты родительской эффективности в процессах образовательной и социальной инклюзии.…”