Mothers' perspectives of the experience and impact of caring for their child with a life‐limiting neurodevelopmental disability

摘要

Abstract Background This study explored mothers' perspectives of the experiences and impact on themselves and their family when their child has a life‐limiting neurodevelopmental disability. Methods Twelve mothers were interviewed and topics included mothers' experiences of caring, the impact on themselves and their family of care provision, and the management of day‐to‐day life. Data were analysed using thematic analysis. Results Four themes were identified. “Starting Out” relates to mothers' experiences of the birth of their child and the aftermath. “Keeping the Show on the Road” describes the strategies families employ to manage life day to day and the resources they use. “Shouldering the Burden” describes the range of physical, psychological, and social consequences of the situation for mothers and the family. “The Bigger Picture” relates to the world outside the family and how this is navigated. Conclusions Findings suggest mothers' overall experiences are characterized by a constant struggle, with evidence of negative impacts on family life, though there is also evidence of resilience and coping. Implications regarding the provision of services are discussed.