Family-Centered Care for Children With Autism Spectrum Disorders: A Review

Abstract

Much has been written about family-centered care (FCC) as a best practice for children with special health care needs. There is limited research on the extent to which children with autism spectrum disorders and their families receive FCC or to delineate what elements of FCC are particularly important to meet their needs. We will examine the extant literature on FCC as a collaborative and empowering practice, the perceptions of parents of children with disabilities about FCC in both the healthcare and education fields, and will review the limited research on the specific needs of families that have a child with ASD. As part of this review, we will identify future directions for research and practice in caring for children with ASD and their families.KEYWORDS autism spectrum disorders, children with special health care needs, family-centered care, medical home, parents Of all the challenges a parent may ever face, caring for a child with special health care needs is among the most life changing. Children with special health care needs (CSHCN) are children who have or who are at risk for ''chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type and amount beyond that required by children generally'' (McPherson et al., 1998, p. 138). Over the years a growing body of literature has pointed to the importance of caring for CSHCN in the context of the family and including family members as equal partners in care. This approach, commonly referred to as family-centered care (FCC), acknowledges and values the central role families play in children's health and well-being and encourages collaboration, information sharing, empowerment, and joint decision making

Quality Determinants of Services for Parents of Young Children with Autism Spectrum Disorders

“…These models include family-centered care (Gabovitch and Curtin 2009), case management (Parellada et al 2013), or community mental health services (Brookman-Frazee et al 2011). Along this line, Barelds et al examined the quality of ID services in the Netherlands from users' and parents' point of view and in the context of integrated care (Barelds et al 2009(Barelds et al , 2010.…”

Concerns of parents and teachers of children with autism in elementary school

“…Family–school partnerships lead to more effective intervention implementation (Iovannone et al, 2003), improved relationships and greater satisfaction with care (Renty and Roeyers, 2006), superior outcomes for children including the acquisition, generalization, and maintenance of skills (e.g. challenging behavior; Gabovitch and Curtin, 2009; Moes and Frea, 2002; Simpson, 2005), and enhanced family functioning (e.g. more positive interactions; Benson et al, 2008; Koegel et al, 1996).…”

The Family Impact Lens: A Family‐Focused, Evidence‐Informed Approach to Policy and Practice

“…Family instability exposes children to an array of negative developmental outcomes, disadvantages adult family members emotionally and economically, and contributes to growing disparities of income and opportunity (Hawkins & Ooms, in press). Policies and practices should reinforce couple, marital, parental, and family commitments (Knox et al, 2010), recognizing that major family changes or transitions, such as aging, adoption, or divorce, may be extended processes requiring ongoing support (Gabovitch & Curtin, 2009; Olson & Gorall, 2003). Incorporating prevention strategies can avert crises and chronic situations that can threaten family structure and functioning (Center for the Study of Social Policy, 2008).…”