From Chronic Health Condition to Disability Identity: Opportunities for Health Informatics Engagement

Area of Science:

• Health Informatics
• Sociology of Health
• Disability Studies

Background:

• Millions of Americans live with chronic health conditions (CHCs).
• A subset of individuals with CHCs are increasingly identifying as disabled due to their conditions.
• This self-identification challenges traditional health informatics perspectives on disability and CHCs.

Purpose of the Study:

• To explore the impact of a disability identity on individuals with CHCs.
• To understand how a social model of disability influences the experiences of people with CHCs.
• To identify opportunities for health informatics to support disability identity development.

Main Methods:

• Qualitative study involving interviews with 15 participants.
• Participants identified as disabled due to their CHCs.
• Analysis focused on the process and outcomes of adopting a disability identity.

Main Results:

• Developing a disability identity was often challenging for participants.
• Adopting a disability identity led to significant benefits, including enhanced self-acceptance.
• Participants reported increased accessibility and a stronger sense of community after embracing their disability identity.

Conclusions:

• A disability identity, conceptualized as social difference, offers substantial benefits for individuals with CHCs.
• Health informatics has opportunities to better support the development and positive outcomes of disability identities.
• Shifting perspectives from viewing disability as solely a health deficit to a form of social difference is crucial.