A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
About 4.1 million Americans with disabilities are parenting children under age 18, according to the National Center for Parents with Disabilities. Parents with disabilities and their children may encounter misconceptions or negative attitudes such as stigma from members of the public. In particular, some people may assume that children of parents with disabilities will be at risk for poor outcomes as teens or adults. In a recent NIDILRR-funded study, researchers asked young adult children of parents with disabilities about their experiences growing up with a parent with a disability. Researchers wanted to find out how the young adults rated their self-esteem, the level of stigma they perceived exists towards children of parents with disabilities, and their overall experience growing up with a parent with a disability. They also wanted to find out what factors were associated with higher self-esteem, less stigma, and more positive overall experiences growing up.
Researchers at the National Center for Parents with Disabilities surveyed 2,340 young adults who had applied for a college scholarship. The respondents were young adults ages 17-21 who were enrolled in or accepted to college and who had at least one parent with a disability. On the surveys, the respondents were asked to rate their overall self-esteem, the extent to which they believed that children of parents with disabilities are stigmatized, and whether their overall experience growing up with a parent with a disability was very positive, positive, mixed, negative, or very negative. The respondents were also asked to describe what types of disability their parents had, when the disability occurred; and whether it was stable, got better or worse over time, or if it was variable (sometimes better, sometimes worse). Finally, the respondents answered questions about whether they had a disability themselves, how often their family socialized with people with and without disabilities, and how positively or negatively their family was viewed by their neighbors and others in the community.
On average, the researchers found that the respondents reported having high self-esteem, with an average score of 33.54 out of 40). They also reported perceiving moderate levels of stigma based on their parent’s disability (27.65 out of 57). About 54% of the respondents said that their overall experience growing up with a parent with a disability was positive or very positive, about 37% said that it was a mixed experience, and about 8% said that it was a negative or very negative experience.
When the researchers looked at factors associated with self-esteem, stigma, or overall experiences, they found that:
- The parent’s disability course was related to the children’s outcomes: Children of parents with stable disabilities or those that got worse over time had higher self-esteem than children of parents with variable disabilities. Children of parents with stable disabilities or those that got better over time had better overall experiences growing up than children of parents with disabilities that got worse or were variable. In addition, children whose parents had their disabilities before the children were born had more positive overall experiences than children of parents who developed disabilities after the children were born.
- The children of parents with psychiatric disabilities had more challenges: The children of parents with psychiatric disabilities reported encountering more stigma and having more negative overall experiences than the children of parents with chronic health, physical, visual, or hearing disabilities.
- About 30% of the respondents had disabilities themselves. These respondents reported having lower self-esteem and encountering more stigma than the respondents without disabilities.
- The respondents whose families socialized more with others with disabilities, and whose families were viewed more positively in the community, had higher self-esteem, encountered less stigma, and had better overall experiences than the respondents whose families socialized less often with others with disabilities and whose families were viewed less positively by the community.
The authors noted that the respondents in this study were all current or prospective college or vocational training students. It is possible that children of parents with disabilities who are not continuing their education or training may have different experiences. Also, there was a limited number of respondents in this study whose parents had intellectual or developmental disabilities. Children of parents with intellectual or developmental disabilities may have different experiences than the respondents in this study whose parents had other disabilities.
The authors concluded that children of parents with disabilities could have positive life experiences, develop high self-esteem, and go on to college. Connections with other families with disabilities and the family’s positive role within the community may contribute to more positive outcomes. Because children of parents with psychiatric disabilities may face particularly high levels of stigma these individuals may benefit from additional supports and efforts to reduce the stigma associated with psychiatric disabilities. Future research may be useful to identify other factors, such as aspects of the parents’ life histories, that may further shape outcomes for their children as they grow into adults.
To Learn More
Young people who received scholarships through the National Center for Parents with Disabilities at Through the Looking Glass submitted essays about their experiences of growing up with a parent with a disability. While each experience was unique, the essays are threaded with themes of the normalcy of growing up with a parent with a disability, and the resilience and strength of these families despite social and financial obstacles. The essays for scholarship winners from 2013 to 2016 are posted to Through the Looking Glass’ website, along with many resources for parents and grandparents with disabilities and their families: https://lookingglass.org/national-services/scholarships
The National Research Center for Parents with Disabilities conducts research and provides training and technical assistance to improve the lives of parents with disabilities and their families. Their website features resources for parents and professionals, including information sheets, how-to videos from parents to parents, and legal resources. http://heller.brandeis.edu/parents-with-disabilities/index.html
To Learn More About this Study
Jacob, J., Canchola, J. A., & Preston, P. (2018). Young adult children of parents with disabilities: self-esteem, stigma, and overall experience. Stigma and Health. This article is available from the NARIC collection.