Families of children with disabilities: A review of literature and recommendations for interventions.

Families are a critical source of support for children with disabilities. Family members absorb the added demands on time, emotional resources, and financial resources (Baker-Ericzen, Brookman-Frazee, & Stahmer, 2005) that are associated with having a child with a disability. Yet, rewards from having a family member with a disability, such as personal and spiritual growth, have also been noted (Scorgie & Sobsey, 2002). The literature on disability in early childhood encompasses studies of a broad array of diagnoses. While a few diagnosis-specific differences exist, Stein and Jessop (1989) found that caregivers of children with all chronic conditions experience similar impacts, concerns, and needs for support. Thus, this paper will examine family impacts and approaches to intervention across a broad range of disabilities and developmental delays building on the assumption that these diagnoses affect families in similar ways. An extensive amount of research has been conducted on the impact of childhood disability on parents, particularly mothers. The findings of this research have important implications for practitioners who are working with young children and will be discussed below. While parents are the most common type of caregivers for young children with disabilities, there are a growing number of grandparents who are providing custodial care. The literature on custodial grand parenting is not as extensive, yet this population has some unique needs and it is important for practitioners to be aware of these. In addition, there is a growing recognition that families who care for children with disabilities differ cross-culturally. As our society is becoming increasingly diverse, it is important for practitioners to be aware that culture impacts the ways in which families perceive childhood disability. Although much has been written on issues affecting family caregivers, we know of no other paper that has attempted to synthesize this literature and speak to the implications for clinicians working in early intervention. This paper begins with a review of the literature on parents; proceeds to a discussion of issues affecting custodial grandparents; gives special emphasis to the ways in which families differ across culture; and finally, discusses the emerging ideas in intervention that are relevant for these varied types of family caregivers. PARENTS The view that having a child with an intellectual or developmental disability creates negative family outcomes including added stress and parental depression has underpinned much of the research of the past three decades (see Baxter, Cummins, & Yiolitis, 2000; Hayden & Goldman, 1996 for a review). Yet, research on this subject has suggested varying outcomes for families. In support of the view that disability leads to negative outcomes, a couple of comparative studies have noted greater stress in parents of children with disabilities than parents of children without disabilities (Baker-Ericzen, Brookman-Frazee, & Stahmer, 2005; Dyson, 1997). Likewise, two studies, focusing specifically on mothers, have found that mothers of children with mental retardation experience more depression than those of typically developing children when compared using the Beck Depression Inventory (Olsson & Hwang, 2001) and the Center for Epidemiologic Studies Depression Scales (Blacher, Shapiro, & Fusco, 1997). Although these studies suggest a relationship between childhood disability and parent stress or depression, it is important to note that they did not control for variations related to the diagnosis or care demands associated with the disability. When the parental experience has been examined across diagnoses, some differences have been noted. Parents of children with Down syndrome have been found to experience less stress (Ricci & Hodapp, 2003), depression (Abbeduto, Seltzer, Shattuck, Krauss, Orsmond, & Murphy, 2004), and pessimism (Lewis, Abbeduto, Murphy, Richmond, Giles, Bruno, et. …