Document Type

Dissertation

Degree

Doctor of Philosophy (PhD)

Major/Program

Public Health

First Advisor's Name

Dr. Elena Bastida

First Advisor's Committee Title

Committee chair

Second Advisor's Name

Dr. Shanna L. Burke

Second Advisor's Committee Title

Co-committee chair

Third Advisor's Name

Dr. Melissa Howard

Third Advisor's Committee Title

Committee member

Fourth Advisor's Name

Dr. Tan Li

Fourth Advisor's Committee Title

Committee member

Fifth Advisor's Name

Dr. Mariana Sanchez

Fifth Advisor's Committee Title

Committee member

Keywords

Mental health, parents, developmental disability, autism spectrum disorder, ABLE account, scales, interventions, financial planning

Date of Defense

5-28-2021

Abstract

Parents of children with intellectual and developmental disabilities (IDD) experience elevated levels of stress, anxiety, and other adverse mental health conditions. Despite extensive literature on parental mental health, this research addressed three gaps. First, a systematic review identified the interventions and respective scales used to address and assess stress and anxiety among parents of transition-aged children with autism spectrum disorder (ASD). This was necessary given that the stressors parents experience vary with the age of the child. Of the 11 studies included in the final review, it was evident that most interventions and scales were not aligned with the unique needs and characteristics of this population.

Second, quantitative analysis of the 2017-2018 combined National Survey for Children’s Health explored the impact of the health care demands of a child with ASD on the mental health of parents. Health care demands included among others, the time, employment, and financial burden that parents experienced. Findings indicated that the mental health of mothers and fathers were associated with differing factors. For example, among mothers, unfavorable mental health was significantly associated with spending between one to ten hours coordinating care, while among fathers, unfavorable mental health was associated with frustration to obtain services for their child.

Third, using primary data collection, parents of children with IDD (n=176) were recruited to complete an online survey. The study examined parental experiences regarding financial planning and utilization of accounts given the high levels of financial distress these families experience. This study focused on the Achieving a Better Life Experience (ABLE) program, and checking, savings, and trust accounts. Several programmatic and personal barriers were identified which hindered planning and utilization. Parents also reported that only 29.5% of their children with IDD had an ABLE account, while rates for checking, savings, and special needs trust accounts were also low at 26%, 35%, and 13.6%, respectively. Given the impact parental wellbeing has on the child’s trajectory, and vice versa, it is imperative to design scales, policies, interventions, and programs to address the mental health needs of this parent population.

Identifier

FIDC010181

ORCID

0000-0003-0728-2306

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