Center for Medical Ethics and Health Policy Staff Publications

Language

English

Publication Date

2-1-2025

Journal

Disability and Rehabilitation

DOI

10.1080/09638288.2024.2358903

PMID

38841844

PMCID

PMC11621232

PubMedCentral® Posted Date

2-1-2026

PubMedCentral® Full Text Version

Author MSS

Abstract

Purpose: The aim of this qualitative study was to investigate resilience among adults with Osteogenesis Imperfecta (OI).

Materials and methods: Semi-structured interviews were conducted with 15 adults with OI. Transcripts were coded and subsequently abstracted, yielding themes specific to resilience and coping. Interview guides covered broad topics including pain challenges specific to OI, mental health issues related to OI, and priorities for future interventions for individuals with OI.

Results: Participants described resilience in the context of OI as the ability to grow from adversity, adapt to challenges resulting from OI-related injuries, and find identities apart from their condition. Psychological coping strategies included acceptance, self-efficacy, cognitive reframing, perspective-taking, and positivity. Behavioral factors that helped participants develop resilience included developing new skills, pursuing meaningful goals, practicing spirituality, and seeking external resources such as psychotherapy, education, and connection with community.

Conclusion: Having identified how adults with OI define resilience and the strategies they use to cope, we can now develop interventions and guide healthcare providers in improving psychological wellbeing in this population.

Keywords

Humans, Adaptation, Psychological, Male, Female, Adult, Resilience, Psychological, Osteogenesis Imperfecta, Qualitative Research, Middle Aged, Interviews as Topic, Self Efficacy, Cognition, Young Adult, Aged, Osteogenesis Imperfecta, resilience, coping, adaptation, assessment, treatment

Published Open-Access

yes

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