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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. IMPLICATIONS FOR REHABILITATION: Adults with Osteogenesis Imperfecta (OI) employ resilience factors to combat mobility and pain-related issues. Adults with OI report developing adaptive skills to cope with their disease, including forming one's identity outside of OI, growing through adversity, overcoming challenges resulting from OI-related injury, employing psychological adaptations, and practicing behavioral coping strategies. Resiliency factors such as behavioral and psychological coping (e.g., exercise, breathing strategies, acceptance) may buffer against OI-related challenges, and treatment modalities that foster these activities may be beneficial for adults with OI. [ABSTRACT FROM AUTHOR]

Osteogenesis imperfecta (OI) is a pleiotropic, heritable connective tissue disorder associated with a wide range of health implications, including frequent bone fracture. While progress has been made to understand the spectrum of these physical health implications, the impact of OI on psychosocial well‐being, as well as protective factors that buffer against adverse psychosocial outcomes, remain understudied. This present study relies on a qualitative approach to assess patient perspectives on both protective and adverse psychosocial factors specific to OI in 15 adults with varying disease status. Semi‐structured interviews were conducted, subsequently coded, and themes extracted. Themes concerning psychosocial burdens (i.e., negative affective and behavioral impacts of disease status) and protective factors were identified from cooperatively‐coded transcripts (two coders per transcript). Participants reported experiencing an increase in negative affect and disease‐related distress after fracturing a bone and during recovery. Fear and concern specific to the uncertainty of future bone fractures and negative self‐image was common. In contrast to these negative impacts, participants additionally described positive orientations toward their disease and attributed positive traits to their lived experience with a chronic disease. While limited due to small sample size and lack of ethno‐racial diversity, findings highlight a need for continued research on the relationship between OI disease status and psychosocial outcomes, as well as the development of psychological interventions designed for OI populations. Findings have relevant clinical applications for healthcare providers working with those diagnosed with OI. [ABSTRACT FROM AUTHOR]

Osteogenesis imperfecta (OI) is a rare genetic chronic condition leading to fragile bones and frequent bone fractures with wide-reaching health implications. Current literature suggests that children with chronic diseases face unique challenges at school, yet research regarding educational concerns among those with OI is limited. The present study involved qualitative analysis of semi-structured interviews with 10 children with OI and 12 caregivers of a child with OI. Children and caregivers participated in the interviews individually; they were not dyads of participants. Half of the caregivers who participated had OI themselves. The interviews were coded, and six themes were identified: (1) diverse school accommodations; (2) OI-related factors affecting children’s academics; (3) OI-related physical differences regarding physical activities; (4) children’s varying social dynamics; (5) variability in children’s emotions with OI at school; and (6) psychosocial experiences of caregivers in their child’s education. Findings suggest that OI has unique academic, social, physical, and emotional implications for children and their caregivers, and specific accommodations may be necessary to achieve academic success. [ABSTRACT FROM AUTHOR]