The day-to-day experiences of caring for children with Osteogenesis Imperfecta: A qualitative descriptive study

Abstract

AbstractAims and objectivesThis study aimed to explore the day-to-day experiences of caregivers who are caring for children with Osteogenesis Imperfecta (OI).BackgroundOI is a rare genetic condition known to cause bone fragility. Family caregivers, such as parents, of children with OI play an important role in helping these children live well at home.DesignThe design was qualitative description.MethodsA qualitative descriptive study was conducted which adheres to the COREQ guidelines. Adult caregivers (n=18) of children with OI were recruited at a children’s hospital in Montréal, Canada to participate in individual interviews. The interviews were transcribed verbatim and inductively thematically analysed.ResultsThe following caregiving themes were identified in these interviews: regular day-to-day caregiving activities, including morning routines, evening routines, and the facilitation of their child’s mobilization; periods that made the caregiving routine more challenging, such as fractures, surgeries, and pain; and the long-term strategies caregivers developed to support day-to-day care, such as managing the environment, accessing medical and school resources, and coordinating care and respite.ConclusionsThe results showcase what being a caregiver for a child with OI involves on a day-to-day basis.Relevance to clinical practiceThe recommendations include suggestions for future clinical, policy, and research endeavours to develop better policies and interventions to support the unique needs of family caregivers of children with OI. These recommendations may be relevant to other clinicians and policymakers working with families living with rare and chronic physical conditions.