Title

Explanatory Models of Autism and Family Routines

Presenter Information

Nancy BagatellFollow

Location

Room C

Start Time

18-10-2013 11:35 AM

End Time

18-10-2013 12:05 PM

Session Type

Research Paper

Abstract

Family routines, repeated practices that involve two or more family members, have been shown to provide a sense of order and security, family connectedness, promote the accomplishment of instrumental goals, and contribute to family health and well-being. Family routines represent the instantiation of what cultures, parents, and children have jointly constructed to achieve personal and cultural goals. For families with young children with autism, constructing family routines has been shown to be challenging, particularly the routines of mealtime and bedtime. However, surprisingly little attention have been given to the study of routines in families with adolescents with autism. Understanding how families negotiate and modify routines as children become adolescents and the reasons why routines are established has both theoretical and practical importance. This paper explores one finding - explanatory models and the impact on the construction of family routines - from the analysis of qualitative data from a mixed-method study that included 20 families with typically developing adolescents and 20 families with adolescents with autism.

The participants in the qualitative portion of the study included four families with adolescents diagnosed with autism (moderate to severe range). The families all had multiple children, were well-educated, and lived in suburban communities. Data collection included multiple, semi-structured and narratively-focused interviews. Participant observation took place with each family in the home or in the community. All interviews were recorded and transcribed. Fieldnotes were written after each visit with the family. Interviews included multiple family members when possible; however, mothers were the main informants. Data analysis involved a multi-phase process, including thematic coding and narrative analysis. Transcripts were read and coded individually by the author and three students. A coding system was developed, codes were clustered and condensed, and eventually themes were identified. Themes were confirmed with peers and exemplar quotes were discussed and placed in thematic categories to enhance rigor. One theme that emerged was explanatory models.

Explanatory models, as described by Kleinman (1980), include the conceptions of the causation of illness/disability, the personal and social meaning, and expectations of outcomes. Parental explanatory models, which are affected by cultural beliefs and attitudes, have been shown to influence the services that a family seeks out, the child’s well-being, and parents’ psychological adaptation, but have not been discussed in relation to family routines. The results of this study suggest that parents develop explanatory models of inter-related concepts that shape family routines. For example, families developed explanatory models of autism that influenced their beliefs about the parental role, the meaning of home, expectations for the future, and what their child could/could not do. These linked beliefs led to specific choices and the construction of unique family routines. The stories of two families, with distinct explanatory models, are highlighted. The results are discussed in terms of the theoretical contributions to the study of family routines and the practical applications to occupation-based and family-centered practice.

References

DeGrace, B. (2004). The everyday occupation of families with children with autism. American Journal of Occupational Therapy, 58, 543–550.

Fiese, B. (2007). Routines and rituals: Opportunities for participation in family health. Occupational therapy journal of research: Occupation, participation, and health, 42,41S-49S.

Evans, J. & Rodger, S. (2011). Mealtimes and bedtimes: Windows to family routines and rituals. Journal of Occupational Science, 15(2), 98-104.

Gray, D. (1995). Lay conceptions of autism: Parents’ explanatory models. Medical Anthropology, 16(2), 99–118.

Kleinman, A. (1980). Patients and healers in the context of culture. Berkeley: University of California Press.

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Oct 18th, 11:35 AM Oct 18th, 12:05 PM

Explanatory Models of Autism and Family Routines

Room C

Family routines, repeated practices that involve two or more family members, have been shown to provide a sense of order and security, family connectedness, promote the accomplishment of instrumental goals, and contribute to family health and well-being. Family routines represent the instantiation of what cultures, parents, and children have jointly constructed to achieve personal and cultural goals. For families with young children with autism, constructing family routines has been shown to be challenging, particularly the routines of mealtime and bedtime. However, surprisingly little attention have been given to the study of routines in families with adolescents with autism. Understanding how families negotiate and modify routines as children become adolescents and the reasons why routines are established has both theoretical and practical importance. This paper explores one finding - explanatory models and the impact on the construction of family routines - from the analysis of qualitative data from a mixed-method study that included 20 families with typically developing adolescents and 20 families with adolescents with autism.

The participants in the qualitative portion of the study included four families with adolescents diagnosed with autism (moderate to severe range). The families all had multiple children, were well-educated, and lived in suburban communities. Data collection included multiple, semi-structured and narratively-focused interviews. Participant observation took place with each family in the home or in the community. All interviews were recorded and transcribed. Fieldnotes were written after each visit with the family. Interviews included multiple family members when possible; however, mothers were the main informants. Data analysis involved a multi-phase process, including thematic coding and narrative analysis. Transcripts were read and coded individually by the author and three students. A coding system was developed, codes were clustered and condensed, and eventually themes were identified. Themes were confirmed with peers and exemplar quotes were discussed and placed in thematic categories to enhance rigor. One theme that emerged was explanatory models.

Explanatory models, as described by Kleinman (1980), include the conceptions of the causation of illness/disability, the personal and social meaning, and expectations of outcomes. Parental explanatory models, which are affected by cultural beliefs and attitudes, have been shown to influence the services that a family seeks out, the child’s well-being, and parents’ psychological adaptation, but have not been discussed in relation to family routines. The results of this study suggest that parents develop explanatory models of inter-related concepts that shape family routines. For example, families developed explanatory models of autism that influenced their beliefs about the parental role, the meaning of home, expectations for the future, and what their child could/could not do. These linked beliefs led to specific choices and the construction of unique family routines. The stories of two families, with distinct explanatory models, are highlighted. The results are discussed in terms of the theoretical contributions to the study of family routines and the practical applications to occupation-based and family-centered practice.