Project Description:
In the United States, nearly 1 in 10 children has a developmental disability (Centers for Disease Control and Prevention (CDC), 2021), and 1 in 5 households cares for a child with special needs (Ghandour et al., 2022). People with the most severe disabilities have a life expectancy of 49.7 years, whereas those with milder disabilities can expect to live 77.7 years (Bahk et al., 2019). Since most of the individuals stay with their families after leaving school at 22 years old (U.S. Department of Education, 2017), individuals with disabilities can spend approximately 25–55 years at home with their families with limited to no school system support. With existing legislative protections against discrimination for individuals with disabilities in educational programs (Section 504; ADA, 2008), students with disabilities have opportunities to receive continuing education. However, most students with disabilities return home to live with their families after temporary post-school boarding education and training (Wagner et al., 2005). Such programs give additional training and experience but might also create additional challenges on top of the prevalence of mental health disorders among parents of children with intellectual disabilities. A staggering 28.3% of these parents experience depressive disorders, and 18.3% experience anxiety disorders (Tak et al., 2018). Additionally, other psychiatric disorders—including psychosis, insomnia, and alcohol use—affect 8.3% of these parents, resulting in a cumulative psychiatric morbidity of approximately 55% (Totsika et al., 2018). The transitions back and forth from home to a post-school boarding education and training venue require caregivers to cope and process their emotions and behaviors, in addition to their preexisting overwhelming stress and mental health status (Cheak‐Zamora et al., 2015). Research is lacking in recognizing caregivers' mental well-being, as it directly impacts child behavioral outcomes and development (Mitchell & Abraham, 2018); especially concerning their long-term care taking responsibility once their children are out of school (Anderson et al., 2018).
We are going to address this gap by understanding caregivers' emotional and behavioral stages.
Our research objectives include: (RO1) Investigate the adaptation strategies of primary caregivers during the transition of their young adult children with disabilities into post-school boarding education and training programs. (RO2) Investigate the subsequent responses of primary caregivers during the transition of their young adult children with disabilities into post-school boarding education and training programs. The research aims to investigate the adaptation stages through a qualitative grounded theory approach, involving six-month longitudinal semi-structured interviews with 12 caregivers of first-year students in three post-school boarding education and training programs. The study seeks to develop theories and enhance understanding yet maintain rigor and credibility through triangulation and following Qualitative research method guidelines (Tong et al., 2007).
Keyword(s):
Family, Mental Health, Youth with Disabilities, Grounded Theory
Primary Target Audience Geographic Descriptor:
State, National, International
