title: Family functioning mediates adaptation in caregivers of individuals with Rett syndrome.
abstract: The objective of this study was to investigate factors related to family functioning and adaptation in caregivers of individuals with Rett syndrome (RS).
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  A potential target for intervention is strengthening of caregiver competence in the parenting role to enhance caregiver adaptation.
authors.affiliation: Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, 31 Center Dr. Rm. B1B36, Bethesda, MD, 20814, USA; Health, Behavior, and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, USA.
authors.forename: Amanda E
authors.initials: AE
authors.lastname: Lamb
authors.affiliation: Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, 31 Center Dr. Rm. B1B36, Bethesda, MD, 20814, USA; Health, Behavior, and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, USA; Medical Genomics and Metabolic Genetics Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, USA; Johns Hopkins Center for Talented Youth, Baltimore, USA. Electronic address: barbarab@mail.nih.gov.
authors.forename: Barbara B
authors.initials: BB
authors.lastname: Biesecker
authors.affiliation: Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, 31 Center Dr. Rm. B1B36, Bethesda, MD, 20814, USA.
authors.forename: Kendall L
authors.initials: KL
authors.lastname: Umstead
authors.affiliation: Health, Behavior, and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, USA; Johns Hopkins Center for Talented Youth, Baltimore, USA.
authors.forename: Michelle
authors.initials: M
authors.lastname: Muratori
authors.affiliation: Medical Genomics and Metabolic Genetics Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, USA.
authors.forename: Leslie G
authors.initials: LG
authors.lastname: Biesecker
authors.affiliation: Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, 31 Center Dr. Rm. B1B36, Bethesda, MD, 20814, USA; Health, Behavior, and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, USA.
authors.forename: Lori H
authors.initials: LH
authors.lastname: Erby
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000223:Adaptation, Psychological; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D003430:Cross-Sectional Studies; D004644:Emotions; D005190:Family / Q000523:psychology*; D005195:Family Relations; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D011788:Quality of Life; D015518:Rett Syndrome / Q000523:psychology*; D020377:Self Efficacy; D012944:Social Support; D013315:Stress, Psychological; D011795:Surveys and Questionnaires
keywords: Adaptation; Caregiver; Coping; Family functioning; Neurodevelopmental disorder; Rett syndrome; Self-efficacy