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

PARENTS of children with disabilities; CHILDREN with disabilities -- Home care; ATTITUDE (Psychology); PSYCHOLOGICAL adaptation; PSYCHOLOGY of caregivers; CHILDBIRTH; FAMILIES; HOME nursing; INTERVIEWING; PSYCHOLOGY of mothers; PSYCHOLOGICAL resilience; QUALITATIVE research; ACTIVITIES of daily living; CHILDREN with disabilities; THEMATIC analysis; BURDEN of care; ATTITUDES of mothers

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. [ABSTRACT FROM AUTHOR]