Family functioning mediates adaptation in caregivers of individuals with Rett syndrome

Abstract

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 Practice Implications: A potential target for intervention is strengthening of caregiver competence in the parenting role to enhance caregiver adaptation.

Factors Associated with Parental Adaptation to Children with an Undiagnosed Medical Condition

“…(Unpublished Manuscript). Parental Adaptation to an Undiagnosed Medical Condition in their Child) and parents of children with a diagnosed intellectual and/or physical disability (Lamb et al 2016; Peay et al 2016; Truitt et al 2012), parents in this population had significantly lower adaptation scores. Similarly, parents in this population had significantly lower hope, perceived social support and coping efficacy when compared to parents of children with a diagnosed medical condition (Lamb et al 2016; Manuel et al 2003; Peay et al 2016; Truitt et al 2012).…”

“…The score for each subscale and total scale are the mean response to each item, yielding scores from one to five, with higher scores indication greater adaptation. The PAS has been used to measure parental adaptation in a number of settings, including parents of children with Down syndrome (Truitt et al 2012), muscular dystrophy (Peay et al 2016), Rett syndrome (Lamb et al 2016), and undiagnosed medical conditions (Madeo, A. C., Bernhardt, B. A., & Biesecker, B.…”

“…(Unpublished Manuscript). Parental Adaptation to an Undiagnosed Medical Condition in their Child); c Mothers of children with muscular dystrophy (Peay et al 2016); d Parents of children with Rett syndome (Lamb et al 2016); e Mothers of children with cerebral palsy (Manuel et al 2003) …”

Commitment to care: the most important coping strategies among family caregivers of patients undergoing haemodialysis

“…This approach entails a process of identifying, interpreting and conceptualising the inner meanings of qualitative data . This study sought to discover and describe the strategies used by family caregivers of patients to cope with challenges during the process of patient care; the coping strategies are processes that occur over time and that are informed by the complex relationship between individuals and their social context ; therefore, it has been chosen for the study.…”

Time for Activities for Girls and Women with Rett Syndrome

“…There is a need for early and regular intervention, preventive management and an individualized approach at every age, even for adults and the elderly with RTT (Anderson, Wong, Jacoby, Downs, & Leonard, 2014;Halbach et al, 2008). Parents and all professionals supporting individuals with RTT also need support to be able to cope (Lamb et al, 2016;Retzlaff, 2007).…”