Date of Conferral

9-22-2026

Date of Award

September 2026

Degree

Ph.D.

School

Psychology

Advisor

Mark Arcuri

Abstract

Adults with spinal muscular atrophy (SMA) may experience significant disability-related stressors, yet mental health services remain underused within this population. Although prior research has identified barriers to service use among individuals with SMA and people with disabilities more broadly, there is less literature about how adults with SMA experience the mental health care system. The purpose of this qualitative phenomenological study was to explore lived experiences of adults living in the United States with SMA as they relate to this system. Guided by the biopsychosocial model and Andersen’s behavioral model, the study involved addressing the question: What are lived experiences of adults living in the United States with SMA as they relate to the mental health care system? Data were collected through semi-structured interviews with eight adults with SMA and analyzed using thematic analysis within a phenomenological framework, supported by an iterative coding process in MAXQDA. Three interrelated themes emerged: (a) accessibility determined whether therapy was usable, (b) therapy felt safer and more effective when disability was understood, and (c) therapy was a dynamic process of navigating fit and continuity. Findings highlighted barriers related to accessibility and provider knowledge. Recommendations include examining adults with SMA who have never accessed therapy and exploring disability-informed therapist training. Positive social change may result from improving access to mental health services that are validating and responsive to lived realities of adults with SMA.

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