Occupational adaptation: Assessing families' adaptive capacity
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Families with children diagnosed with autism spectrum disorders (ASD), experience many challenges and often adapt their whole life style around their child's needs. This line of research describes the results of three studies aimed at: (1) Exploring the needs for occupational services for families with children diagnosed with ASD; (2) Developing an assessment instrument serving as the initial step in the occupational therapy evaluation; and (3) Establishing initial content validity of the assessment. Five major themes emerged from the analysis of the results from the explorative study using phenomenological methods: Family Occupations, Psychosocial Aspects, Assessments, Treatments and Overall Reflections. For family occupations the concepts of routines, focusing on the child with autism, implementing own home programs and typical occupations are discussed. Concepts within the psychosocial theme were stress and worry, guilt, disappointment and need for early information. Concepts from assessments and therapy were inappropriate tests, minimal parent involvement, making the best choices and occupational therapy. The results from the explorative study indicated the necessity to carefully assess: The entire family's needs and the child's needs, families' present and preferred engagement in occupations and factors that decrease the family's stress level. A literature review of assessments in the fields of family sciences and occupational therapy resulted in an analysis of two family centered assessments and three occupation based assessments. The development of a family focused occupation based assessment "The Family Occupational Needs Assessment" (FONA) is described. The FONA measures a family's adaptive response to specific occupational challenges in present time together with occupations the family would like to participate in for the future. The FONA presents a systematic approach for facilitating and documenting treatment planning, treatment implementation and treatment outcome measures based on the theory of occupational adaptation. Finally, results from a pilot testing of the FONA are presented. An analysis of the FONA's effectiveness and efficiency in obtaining valuable information is compared with the open-ended interview procedure performed in study 1. Implications for evidence-based practice following the framework of the theory of occupational adaptation are discussed together with the use of the FONA in education of occupational therapists. The FONA's potential for future research and application with other populations is suggested.