ABSTRACT
Although faith has particular prominence in the contemporary American landscape, its intersection with disability and families has received little attention. We examined the spiritual and religious lives of 530 parents and caregivers of family members who have intellectual disability. For most participants, faith had clear relevance and was reflected in their congregational participation, beliefs, practices, and strength of faith. Yet considerable diversity was apparent in the ways in which each was evidenced, which included a modest number of families for whom this was not a salient aspect of their lives. Most participants identified ways in which their spirituality and religious participation contributed to their well-being. However, access to social supports through a local congregation was more muted. We address implications for professionals who support these families and congregations who welcome them. We also offer recommendations for expanding the opportunities and supports parents and caregivers need to flourish in their faith.
Subject(s)
Intellectual Disability , Parents/psychology , Religion , Spirituality , Adult , Aged , Aged, 80 and over , Caregivers/psychology , Female , Humans , Male , Middle Aged , Parent-Child Relations , Social SupportABSTRACT
All families, including those impacted by disability, desire and deserve opportunities for high quality of life. This study focused on family quality of life (FQOL) among 529 parents with children or adults with intellectual disability (ID). Parents reported moderate to high levels of FQOL satisfaction, with some variability across domains. We conducted hierarchical linear regression analyses to examine associations among FQOL and: (1) individual and family demographic factors, (2) religiosity/spirituality factors, and (3) relationship factors. Findings highlighted the significance of both informal (i.e., family, friends) and formal (i.e., professional) social relationships, as well as the relevance of spirituality/religiosity, as factors contributing to FQOL. We offer recommendations for research and practice aimed at enhancing FQOL of parents with children and adults who have ID.
Subject(s)
Family/psychology , Intellectual Disability/psychology , Quality of Life/psychology , Adolescent , Adult , Aged , Aged, 80 and over , Child , Child, Preschool , Female , Humans , Infant , Male , Middle Aged , Parents , Personal Satisfaction , Surveys and Questionnaires , Young AdultABSTRACT
Recognizing the prominent role of parents in supporting their children with intellectual and developmental disabilities (IDD), improving quality of life for these families is an essential endeavor. While much attention has focused on the experiences of families with younger children with IDD, little is known about the family quality of life (FQOL) among families with transition-age youth and young adults. We examined the FQOL ratings of 425 parents with a child between 13-21 years of age with intellectual disability or autism to understand FQOL and the factors that may shape it. Overall satisfaction with FQOL was somewhat high for this sample, with some variability across domains. Higher FQOL ratings were predicted by lower frequency of challenging behaviors, lower support needs, and higher strength of parental religious faith. We present recommendations for research and practice focused on promoting quality of life during the transition period.
Subject(s)
Adolescent Development/physiology , Child Development Disorders, Pervasive/psychology , Family/psychology , Intellectual Disability/psychology , Quality of Life/psychology , Adolescent , Adult , Female , Humans , Male , Young AdultABSTRACT
Abstract Although the prominence of spirituality and religious connections among the people of the United States is well documented, little is known about the place of faith in the lives of youth with developmental disabilities. In this qualitative interview study, we examined the perspectives of 20 young people with intellectual disability or autism on their faith, spiritual expressions, and disability. Participants identified key spiritual expressions and themes reflecting the importance of faith in their lives. They also shared perceptions of their disability in the context of their faith, highlighting affirmation and acceptance of their disability. We offer recommendations to families, faith communities, and service systems for supporting the spiritual formation, expression, and connections of young people with disabilities.
