Monday, November 3, 2003

This presentation is part of : Families at Risk

Stress and Coping Responses: Siblings of Children with Down Syndrome or Autism

Barbara Mandleco, RN, PhD, College of Nursing, Brigham Young University, Provo, UT, USA, Tina Dyches, PhD, Department of Counseling Psychology and Special Education, Brigham Young University, Provo, UT, USA, and Susanne Olsen, PhD, Marriage, Family and Human Development, Brigham Young University, Provo, UT, USA.
Learning Objective #1: Describe stressors and coping responses of siblings of children with Down syndrome or autism
Learning Objective #2: Apply information about the stressors and coping responses of siblings of children with Down syndrome or autism to practice

The purpose of this qualitative, descriptive design was to identify and describe stressors and coping responses as actually perceived and reported by 32 children living with a brother or sister with Down syndrome (n = 19) or autism (n = 13). Families were drawn from a larger study investigating family adaptation to disability. The children in this study had a mean age of 10 years, 4 months. Following approval from appropriate institutional review boards and after obtaining informed consent/assent, siblings of children with Down syndrome or autism completed daily semi-structured diaries for two weeks. Perceived stressors were identified using two statements: (a) The hardest thing about living with my brother/sister (child with special needs) today was; and (b) Other things that upset me today were. Coping strategies were identified when children completed the statement: This is what I did about it. Diaries were transcribed verbatim and entries were analyzed through a process of content analysis with appropriate application of methods to assure rigor and trustworthiness. Challenges identified in living with a sibling with Down syndrome or autism were related to the child's behavior (aggression, disruption, uncooperativeness) or caring for the child, as well as stressors encountered in everyday activities independent of the child with Down syndrome or autism (homework, demands from parents). Ways the siblings coped included retaliating verbally or physically, seeking help from others, ignoring the situation, or doing nothing. Both sets of siblings identified similar stressors and coping mechanisms. Results validate the importance of gathering data in an open-ended manner directly from siblings and confirmed that nursing interventions should be based on assessment of individual differences in stress appraisal and coping efforts. The project also offers questions for future study and implications for theory and instrument development.

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