Publication year
2015
Citation Title
Family quality of life during the transition to adulthood for individuals with intellectual disability and/or autism spectrum disorders.
Journal Name
American Journal on Intellectual and Developmental Disabilities
Journal Volume
120
Issue Number
5
Page Numbers
395-411
DOI
10.1352/1944-7558-120.5.395
Summary
Parents of children with intellectual and developmental disabilities (IDD) may face additional stressors and challenges in supporting the needs of their children, thus impacting quality of life. This study examined factors related to family quality of life among parents of children with an intellectual disability or autism. Findings revealed overall satisfaction with family quality of life, with some differences in domains.
Key Findings
Parents’ religious faith was positively related to family quality of life, thus greater well-being was present among parents who sought their religious faith more frequently to cope with daily stressors.
Challenging behaviors (i.e., aggression, self-harm) and lack of support from friends and family negatively impacted parents’ emotional well-being and overall quality of life.
Overall, 70% of parents were satisfied with their family quality of life; with physical well-being and family interactions rated the highest.
Implications for Military Professionals
Collaborate with other professionals in the field to provide support and resources for military families of children with intellectual and developmental disabilities (IDD)
Develop practical models for incorporating faith and other family values to help support families of children with IDD in making important decisions
Implications for Program Leaders
Utilize evidence-based practices that are designed to address challenging behaviors in children with developmental disabilities
Offer educational opportunities for families of children with IDD to accurately address needs and provide appropriate resources for family support
Implications for Policy Makers
Encourage research that examines how to implement effective programs to further support military families who have children with IDD
Promote partnerships among professionals and associations that work to improve family quality of life among families with children of developmental disabilities
Methods
Participants were recruited via mail, email, and word-of-mouth throughout the state of Tennessee.
Parents completed questionnaires addressing family quality of life (i.e., family interaction, parenting, emotional and physical well-being, and disability-related supports), religious faith, child’s main mode of communication, challenging behaviors, and severity of disability.
Statistical analyses were conducted to determine the relationship between parents’ family quality of life ratings and child- (i.e., functional abilities) and family- (i.e., parent education) level factors.
Participants
The sample included 425 parents/primary caregivers of young adults with developmental disabilities.
Developmental disabilities included 43% autism, 38% intellectual disability, 12% both autism and intellectual disability, and 7% other disability or not answered.
Parents’ ages ranged from 31-72 years (M = 48 years, SD = 8); children’s ages ranged from 13-21 years (M = 16 years, SD = 3).
Most participants were White (83%), followed by 14% Black, and an equal amount of Latino, Asian American, and multiracial (2% for each).
Limitations
Interpretations based on study findings are limited due to a lack of a randomly selected sample.
Conclusions from this study may be difficult to generalize to all families of children with developmental disabilities throughout the U.S. as participants were recruited only from Tennessee.
Family quality of life was only assessed from one parent, thus study findings are limited to one perspective or point of view.
Avenues for Future Research
Explore family quality of life among families of children with IDD who have graduated from high school and are experiencing young adulthood
Examine techniques for positively addressing challenging behaviors of children with developmental disabilities
Observe how faith in families of children with IDD impacts decisions and overall well-being
Focus
Civilian
Target Population
Population Focus
Abstract
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.
Abstract Document
Attach