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Contextual aspects influencing mothers' placement considerations for their children with autism

"Submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the Occupational Therapy Department, College of Health Care Sciences, Nova Southeastern University."
Abstract Background: In 2005, the Centers for Disease Control and Prevention recognized autism as an urgent public health concern understanding families would need supports services at many levels. Parents are the most prominent caregivers of children with disabilities and inadequacy of support services often influences the placement outside of the home. Federal mandates require that states actively avoid placements based on costs, community connections, and least restrictive environments; however, unsustainable family life potentially leads to undesired placements. Mothers with maternal stress raising children with severe autism with behavioral responses at home are at severe risk for social and economic marginalization (Lucenko, Mancuso, & Janssen-Timmen, 2008; Nankervis et al., 2012; Peacock et al., 2012). Placement and respite options are insufficient to meet the current needs for crisis intervention and long-term care, and community health funding has been inconsistent across the states. Literature review: Interdisciplinary and interprofessional literature on placement considerations, autism, and state, national, and global policy documents such as the World Health Organization was searched. Unique to this study was its inclusion of Sen's (1999) development economics capabilities approach in addition to Law et al.'s (1996) occupational therapy model of practice for its congruence with occupational therapy, its support of freedom and choice, and self-determinacy as a necessity for agency or occupational performance. Methods: A qualitative phenomenological approach to gain untapped insights into the occupations and environments influencing mothers' placement considerations. Phenomenology is useful when a deeper understanding is necessary, or to identify a vulnerable group, to shape services, or to develop or revise policies when a change is needed. Results: Data analysis produced six themes (a) feeling judged in their occupational roles as mothers; (b) restricted freedoms and occupational deprivations as a family; (c) the paradox of support services; (d) fears about their families' well-being; (e) occupational injustices revealed through mothers' feelings about placement considerations; and (f) spiritual aspects of childhood placement considerations. Discussion: The mothers' composite themes were discussed in relation to historical and evolving mental health attitudes, practices and policies, the evolving national health insurance policy, and the economy. The influence of contemporary culture on the mothers placement considerations were discussed in regard to Internet and e-health technologies and new ways of knowing, communicating, and decision-making with public health implications. Conclusion: Professional implications for research, practice, and justice issues are discussed.

Identiferoai:union.ndltd.org:nova.edu/oai:nsuworks.nova.edu:hpd_ot_student_dissertations-1034
Date01 January 2014
CreatorsBoyd, Margaret E. Moffett
PublisherNSUWorks
Source SetsNova Southeastern University
Detected LanguageEnglish
Typedissertation
Formatapplication/pdf
SourceOccupational Therapy Program Student Theses, Dissertations and Capstones

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