Academic journal article Exceptional Children

Services and Supports, Partnership, and Family Quality of Life: Focus on Deaf-Blindness

Academic journal article Exceptional Children

Services and Supports, Partnership, and Family Quality of Life: Focus on Deaf-Blindness

Article excerpt

Family quality of life (FQOL) is "a dynamic sense of well-being of the family, collectively and subjectively defined and informed by its members, in which individual and family-level needs interact" (Zuna, Summers, Turnbull, Hu, & Xu, 2010, p. 262). Research on families affected by disability is shifting away from examining the negative impact of disability on family life. Focusing on FQOL is an integral part of the movement from a deficit to a positive perspective (Chiu, Kyzar, et al., 2013). The presence of disability in the family system affects multiple aspects of family life, including family interaction, functioning, and life span (Turnbull, Turnbull, Erwin, Soodak, & Shogren, 2015). FQOL is sensitive to this multifaceted impact (Kober & Eggleton, 2009) and has been identified by families and service providers as an important outcome for services (Dunst & Bruder, 2002).

Zuna et al. (2010) defined services as "a range of educational, social, and health-related activities expected to improve outcomes for the individual or family as a whole" and supports as "less tangible resources provided to the individual or to the whole family which are expected to improve outcomes for the individual or family" (p. 15). Thus, services tend to be formally delivered by professionals, and supports tend to be informally delivered by family and friends. Although family research in the disability field has documented families' unmet needs (Almasri et al., 2011; Chiu, Turnbull, & Summers, 2013) and perceptions of services and supports adequacy (Bitterman, Daley, Misra, Carlson, & Markowitz, 2008; Vohra, Madhaven, Sambamoorthi, & St Peter, 2014), very little research has linked perceptions of services and supports adequacy to holistic family outcomes, such as FQOL. Further, of the research that has linked families' perceptions of services and supports to outcomes, the focus has been on supports rather than formal services (Kyzar, Turnbull, Summers, & Gomez, 2012).

The scant research that does examine the relationship of services adequacy to holistic family outcomes indicates that services adequacy predicts outcomes such as FQOL and that satisfaction with family-professional partnership, hereafter referred to as partnership, is also a key variable influencing that relationship. Epley, Summers, and Turnbull (2011) examined the relationship between families' perceptions of needs, adequacy of received services, and outcomes for families in early intervention (Part C) services. They found a path relationship in which immediate outcomes of service provision (as measured by the Office of Special Education Programs family outcomes) predicted FQOL when controlling for degree of unmet needs and parent ratings of Part C early intervention services adequacy. These findings suggest that parents' ratings of early intervention services adequacy may be related to both immediate and broader family outcomes. Similarly, Summers et al. (2007) examined the association between early intervention and early childhood special education services adequacy and FQOL and found a positive correlation between ratings of services adequacy and FQOL. Summers and colleagues also found that families' satisfaction with partnership was a partial mediator of the effects of services adequacy on FQOL, suggesting that "the quality of relationships with professionals is also a critical component of effective service models" (Summers et al., 2007, p. 334).

Other research examining the link between family-centered services and family outcomes has identified (a) a correlation between family-centered service delivery and FQOL (Davis & Gavidia-Payne, 2009) and (b) partnership as a key variable, particularly, partnerships that are characterized as including participatory practices in addition to relationship practices (Dempsey & Keen, 2008; Dunst, Trivette, & Hamby, 2007). This research, however, is limited by samples that, for the large part, include families of young children with mild disabilities. …

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