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Seeing the Glass Half Full: Benefits to the Lived Experiences of Female Primary Caregivers of Children With Autism

Markoulakis, Roula MSc; Fletcher, Paula PhD; Bryden, Pamela PhD

doi: 10.1097/NUR.0b013e31823bfb0f
Feature Article

Purpose: Autism spectrum disorders are the most common developmental disorders, affecting 1 in 165 Canadian children. Although the experiences of the caregivers of children with autism have been examined to some extent, a thorough investigation of the benefits of this experience is warranted.

Methods: The lived experiences of 8 married female primary caregivers of children with autism were assessed through a phenomenological study involving background questionnaires and one-on-one, semistructured interviews. All recruited participants completed the study.

Results: Benefits were found in all areas of questioning, including financial, social, familial, health, and employment implications, in addition to benefits arising from activities and involvements taken on as a result of raising a child with autism. The findings shed light on an unconventional aspect of the effects of raising a child with autism.

Conclusions: Costs to these women’s experiences were not predominant, and benefits arising from the caregiving role lead to positive accounts of their lived experiences. Results have broader implications for the understanding of the primary caregiver situation and the improvement of interactions with individuals with these lived experiences. In this way, clinical nurse specialists may encourage and contribute to support systems that foster a positive experience for caregivers of children with autism spectrum disorder, the children they care for, and their families.

Author Affiliations: PhD student (Ms Markoulakis), Graduate Department of Rehabilitation Science, University of Toronto; Professors (Drs Fletcher and Bryden), Department of Kinesiology and Physical Education, Wilfrid Laurier University, Waterloo, Ontario, Canada.

The authors report no conflicts of interest.

Correspondence: Roula Markoulakis, MSc, Graduate Department of Rehabilitation Science, University of Toronto, 160-500 University Ave, Toronto, ON, Canada M5G1V7 (roula.markoulakis@utoronto.ca).

© 2012 Lippincott Williams & Wilkins, Inc.