The goal of the project is to follow mothers of adolescents with autism spectrum disorder across their child’s transition to adulthood to assess changes in services, stress, physical health and emotional well-being.
Principal Investigator (PI): Erin Barker, PhD
Institution & Department: Concordia University – Department of Psychology
Year(s) collaborated with SCERT on project: 2016 - 2017
Results of Research Project:
Published Paper: The Impact of Formal and Informal Support on Health in the Context of Caregiving Stress
Jean-Philippe Gouin, Chelsea da Estrela, Kim Desmarais and Erin T. Barker
Abstract: Caregiving stress increases risk for poor health. The overproduction of inflammatory markers is a core process contributing to this effect. In this study the authors investigated whether formal and informal social support act as protective factors against stress-induced immune dysregulation. Fifty-six parents of children with an autism spectrum disorder completed questionnaires on formal support services, informal social support, self-rated health, and daily somatic symptoms, and they provided a blood sample for analysis of C-reactive protein (CRP), a biomarker of inflammation. The results indicated that greater informal social support was associated with lower CRP and that a higher number of formal support services received by the family was related to better self-rated health, fewer daily somatic symptoms, and lower CRP. Moreover, the impact of support services on the parents' CRP levels increased with child age. These findings highlight the role of formal and informal support in protecting the health of individuals facing caregiving stress across the life course.
Gouin, J.-P., da Estrela, C., Desmarais, K. and Barker, E.T. (2016), The Impact of Formal and Informal Support on Health in the Context of Caregiving Stress. Fam Relat, 65: 191-206. https://doi.org/10.1111/fare.12183
PhD Dissertation: Leaving ‘Em High and Dry: An Examination of Mothers’ Experiences Accessing Services for their Children with Autism Spectrum Disorder
Kim Dismarais, 2021
Abstract: This dissertation reports on the results of a qualitative investigation of the experiences of mothers whose children with autism spectrum disorder were experiencing transitions into and out of adolescence. A Constructivist Grounded Theory methodology was implemented in this study. Semi-structured interviews were conducted with 78 mothers who had children between the ages of 12 and 22. Mothers’ experiences were influenced by several factors, arranged in four core categories: parent stressors (67%), services (4%), professionals (24%), and parent solutions (5%). The constructivist grounded theory process culminated with the Parents’ Perceptions Theory (PPT) emerging from the data. The PPT theory explains that maternal stress is elevated when services or clinical practices are perceived to be unhelpful. Specifically, when services or practices were perceived as not addressing the needs of the parents or child from the mothers’ perspectives, mothers reported higher stress. The PPT provides a new account grounded in mothers’ own experiences for the observation that mothers’ who actively receive services still report significant stress.
Desmarais, Kim (2021) Leaving ‘Em High and Dry: An Examination of Mothers’ Experiences Accessing Services for their Children with Autism Spectrum Disorder. PhD thesis, Concordia University.