The health of mothers of children with a life-limiting condition: A qualitative interview study

Abstract

BACKGROUND: The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is rarely explored from mothers’ perspectives. AIM: To explore mothers’ accounts of their physical and mental health, experiences of accessing healthcare and who they think should support their health. DESIGN: Qualitative semi-structured interviews were conducted and analysed using thematic analysis. SETTING/PARTICIPANTS: Thirty mothers of children with a life-limiting condition were recruited via three UK children’s hospices and social media. RESULTS: Mothers felt that their health concerns could be misunderstood by professionals, describing untimely and inappropriate support that failed to recognise the nature of caring for a child with a life-limiting condition. This led to mothers’ reluctance in addressing these concerns. Mothers felt unable to prioritise their own needs, relative to those of their child and worried about who would look after their child if they did become unwell. They described stress as a result of battles with services rather than as a result of caregiving. Mothers valued feeling recognised as caregivers, which made it easier to look after their health alongside their child’s. Hospice support was particularly valuable in this respect. CONCLUSIONS: A more unified system that recognises not only the unique set of challenges presented to mothers caring for a child with a life-limiting condition, but the value of palliative care services in supporting these mothers, is required.