The impact of caring for children with special needs on the ability of parents/caregivers to engage in occupations to support participation
The International Classification of Functioning and Disability (ICF, 2001) has refocused the World Health Organization's (WHO) analysis of health from a paradigm of disease and cure to a wellness perspective of health and ability to participate in life situations. This perspective is central to the practice of occupational therapy. "Engagement in occupation to support participation in context is the focus and targeted end objective of occupational therapy intervention" (Occupational Therapy Practice Framework: Domain and Practice, OTPF, 2002) (p. 611).
Along with this shift in focus has come a focus on family centered practice and increased recognition of contextual factors when working with the client (Case-Smith, 2001; Lawlor & Mattingly, 1998). The definition of client has been expanded to include individuals or groups significant in caring for the primary client. Within the family, parents are the central and consistent figures in the lives of children with special needs. Subsequently, focus on the ability of parents/caregivers to engage in occupation to support participation is an important aspect of family centered practice.
This dissertation was designed to explore the ability of parents/caregivers raising children with special needs to engage in occupation to support participation in context. The line of research was conducted in a series of three studies. The first was a literature review exploring the constructs of participation, family centered practice, the effects on parents of raising a child with special needs, and instruments available to measure the ability of parents/caregivers to engage in occupation to support participation.
The second study involved the development and pilot testing of an instrument to measure parents/caregiver's satisfaction with the efficiency (quantity) and effectiveness (quality) of their ability to engage in occupation to support participation. An occupational adaptation (OA) frame of reference was used in the design of this instrument (Schkade & Schultz, 1992; Schultz & Schkade, 1992).
The third study was a qualitative inquiry into the phenomenon of how pediatric occupational therapists (OTs) viewed their practice as family centered.
Reliable and valid instruments are needed to measure outcomes of occupational therapy directed at improving ability to engage in occupation to support participation in context. The Life Participation for Parents (LPP) was designed to meet this need.