In our previous study, a theory of “role tuning” was developed to explain the dynamic changes of caregiving process during discharge transition for families of physically impaired elders in Taiwan. This model is able to explain the caregiving phenomena in transition for families and has been tested and has also been extensively examined in family care for elders with dementia. Family care is a complex and culturally relevant phenomena and shaped by the developmental stages of the family and its members. Thus, it is reasonable to extend our previous work of family care of elderly patients with Alzheimer’s disease to family care of children with autism. Both diseases are neuro-psychiatric disorders that involve cognitive, behavior, emotional and social difficulties, have no optimal treatment/medication and rely heavily on the care provided by the family. The family developmental stage and the role and relationship of the caregivers with the patients are very different between these two groups. By comparing the family care phenomena of the two populations, the theory developed to explain family care process can be enriched to identify the developmental and relational contextual variables. The substantive theory of role tuning in family care for frail elders might be gradually developed to a more formal theory of family care to explain family care phenomena in a Chinese culture.

     The purpose of this study was to expand the role-tuning model to develop a substantive theory for explaining the longitudinal changes in caregiving process of families of children with autism in Taiwan. By doing so, developmental and relational contextual variables will be identified to enrich the “role tuning” theory in explaining family care phenomena in Taiwan.

     Grounded theory method is selected over other methods due to the reason that grounded theory method is particularly established to serve the purpose of developing/extending an empirically grounded conceptual framework. Face-to-face interviews with participant observations will be used to collect the data. All the interviews will be tape recorded and then transcribed verbatim. Based on the concepts developed previously in the role tuning model, the initial theoretical sampling will include families who of children with different developmental stage and who are past diagnosed, identified as having stresses and conflicts or are in stable condition. At least four families from each site including the clinics, day care and parent support group will be recruited and followed every 3 months for one year in order to maximize the variability and to catch the longitudinal changes of the phenomena. Actual sampling strategies and number of interviews will be decided according to the emerged theory and the saturation of the concepts. Constant comparative strategy will be used to analyze the data. Audit trails, peer debriefing, triangulation, prolonged engagement, thick data with theoretical sampling, and member checks will help to increase the overall trustworthiness of the study.

     PI's extensive experiences with grounded theory approach and family care phenomena, and two co-PI’s sophisticated experiences in working with families of children with autism and with other disability. We believe that the objectives of the proposed project will be able to be successfully accomplished.