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

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Many Americans with chronic health conditions (CHCs) now identify as disabled. Developing this disability identity, viewed as social difference, fosters self-acceptance, accessibility, and community for CHC patients.

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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.