A qualitative exploration of child, caregiver, and clinician perspectives on mental health in children with osteogenesis imperfecta.

Abstract

Osteogenesis imperfecta (OI) is a heritable connective disorder with clinical manifestations including bone fragility and short stature. Previous research identified psychosocial themes related to mental health among children with OI and their caregivers, such as independence, social isolation, depression, and anxiety. Several studies have also examined clinicians of individuals with OI for their perspectives on mental health among their patients. However, no known studies have compared psychosocial themes among all three participant groups concurrently. This qualitative study examined mood and anxiety, along with risk and protective factors, from perspectives of youths, parents, and clinicians. Semi-structured interviews were conducted, which were coded independently by two researchers. Codes were analyzed for extraction of themes. Relevant themes include depressed and anxious mood experienced in individuals with OI, as well as risk factors and protective factors for these symptoms. Participants reported functional limitations and social isolation as key risk factors for symptoms of anxious or depressed mood. In contrast, they discussed positive attitudes, social support, multidisciplinary medical groups, and mental health access as key protective factors. Implications for clinical care and future research are discussed. Convergence and divergence of themes across study samples are discussed in detail.