5012.0 - A Disability Justice Lens in ALS Research: Understanding the Experiences of People Living with ALS and Their Caregivers

Program: Community Health Planning and Policy Development

Session: Inclusion and Impact: Addressing Disability in Public Health

Presenter: Maame-Owusua Boateng

Authors: Ashley Nurse, Christina Pantzer, Asia Beason, Omar Guerrero, Avery DeWitt, Ikra Ahmad, Joan K. Monin, Chelsey R. Carter

Abstract

The ALS Association aims to make ALS a livable disease by 2030. However, existing ALS literature overlooks the role ableism plays in shaping “livability” and integrating a disability justice perspective. Given the complex level of need for many people living with ALS (pALS), intersectionality disability frameworks could be utilized to inform future health interventions and improve pALS and caregivers' quality of life. This presentation will use a disability justice framework to explore how ableism consciously and unconsciously shapes pALS and caregiver experiences.

The Care Interactions in ALS Project is a mixed-methods study exploring care experiences and interactions among pALS and their caregivers. 151 participant surveys were analyzed using SPSS, measuring self-reported patient ALS disability levels (ROADS), mental health (SF-20), ways of coping (COPE), and caregiver support provision and associated stress (Activities of Daily Living and Instrumental Activities of Daily Living) scales. Using inductive thematic analysis, 43 interviews were analyzed to identify ableist beliefs.

pALS report varying levels of ability, caregiver support and associated stress. Additionally, both pALS and caregivers report mental and emotional distress related to ALS. Several interview themes emerged highlighting pALS and caregivers’ emotional experience of navigating stigma, accessibility issues, and dismissive attitudes in healthcare and social spaces.

Findings highlight the importance of using a disability justice framework to fully understand the lived experiences of pALS and caregivers. ALS research requires disability frameworks to inform equitable public health policies that better serve the challenges faced by pALS and caregivers, advancing the goal of making ALS a livable disease.