4.5 Article

Family functioning mediates adaptation in caregivers of individuals with Rett syndrome

Journal

PATIENT EDUCATION AND COUNSELING
Volume 99, Issue 11, Pages 1873-1879

Publisher

ELSEVIER IRELAND LTD
DOI: 10.1016/j.pec.2016.06.018

Keywords

Adaptation; Family functioning; Rett syndrome; Coping; Self-efficacy; Caregiver; Neurodevelopmental disorder

Funding

  1. Intramural Research Program of the National Human Genome Research Institute, National Institutes of Health

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Objective: The objective of this study was to investigate factors related to family functioning and adaptation in caregivers of individuals with Rett syndrome (RS). Methods: A cross-sectional quantitative survey explored the relationships between demographics, parental self-efficacy, coping methods, family functioning and adaptation. A forward-backward, step-wise model selection procedure was used to evaluate variables associated with both family functioning and adaptation. Analyses also explored family functioning as a mediator of the relationship between other variables and adaptation. Results: Bivariate analyses (N = 400) revealed that greater parental self-efficacy, a greater proportion of problem-focused coping, and a lesser proportion of emotion-focused coping were associated with more effective family functioning. In addition, these key variables were significantly associated with greater adaptation, as was family functioning, while controlling for confounders. Finally, regression analyses suggest family functioning as a mediator of the relationships between three variables (parental self-efficacy, problem-focused coping, and emotion-focused coping) with adaptation. Conclusion: This study demonstrates the potentially predictive roles of expectations and coping methods and the mediator role of family functioning in adaptation among caregivers of individuals with RS, a chronic developmental disorder. Practice implications: A potential target for intervention is strengthening of caregiver competence in the parenting role to enhance caregiver adaptation. Published by Elsevier Ireland Ltd.

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