A QUALITATIVE EXAMINATION OF FAMILY AND CAREGIVER EXPERIENCES WITH MENTAL HEALTH TREATMENT IN ILLINOIS

Author

Nicholas Mui, Southern Illinois University CarbondaleFollow

Date of Award

12-1-2023

Degree Name

Doctor of Philosophy

Department

Rehabilitation

First Advisor

Nichols, Jane

Abstract

Family members and caregivers of persons who experience mental disorders may themselves require support and treatment services to help them cope. Mental health agencies in Illinois serve clients with mental illnesses but the extent to which they also provide services to and involve family members and caregivers in the treatment process is unclear. In addition, it is unclear the extent to which the mental health treatment system provides support, including coping skills training and education, to family members and caregivers of persons with mental illnesses. The purpose of this study was to gather information regarding the support that caregivers of persons with mental illnesses were able to receive from the treatment agencies. In addition, caregiver perspectives on their caregiving burden and their ability to become involved in their loved ones’ treatment process were solicited.Datawere gathered through a series of semi-structured interviews with family members of persons with mental illnesses. The interview data were then analyzed using an Interpretive Phenomenological Analysis approach (Smith and Nizza, 2022). The group experiential themes that arose revealed that while some caregivers were able to access support from mental health agencies, others were not. Some of those who were not able to access support from mental health agencies were able to access support from other sources, such as family members, friends, and groups like the National Alliance on Mental Illness (NAMI). However, there were a minority of participants who did not have access to support and expressed significant emotional and financial burden. Caregivers were also mixed in their reports of treatment involvement. Some caregivers were able to be involved in treatment, safety planning, and medication management decisions for their loved ones. Others were not allowed to be involved, despite requests. An unanticipated theme arose regarding academic accommodations for adolescents with mental illnesses and the difficulties caregivers had securing accommodations for their loved ones. Another aspect of the mental health treatment process arose when caregivers brought up the topic of how mental illnesses were managed in ER settings prior to psychiatric hospitalization. The findings from this study suggest that caregivers have mixed experiences with being able to access support from either the mental health agencies or other sources. In addition, Caregivers were not always allowed to be involved with their loved ones’ treatment, even when their intentions were to assist their loved ones in achieving therapeutic goals. Suggestions for improvements to mental health treatment processes and support that could benefit caregivers were also discussed.