Research project – Crisis Prevention rather than Crisis Management
The Health of Mothers of Children with a Life-Limiting Condition (Workstream 2 & 3)
The number of children with life-limiting conditions is growing. Their mothers often take on a major caregiving role at home and are more likely to experience health problems compared to other mothers. However, their experiences and needs are not often explored.
This study aimed to understand the physical and mental health issues these mothers face. It also looked at how they think their health should be supported and which services should be involved.
30 mothers of children with a life-limiting condition were recruited via 3 UK children’s hospices and social media.
Project Lead: Dr Lorna Fraser, University of York
NIHR Academy
2021
To explore mothers’ accounts of their physical and mental health, experiences of accessing healthcare and who they think should support their health.
Qualitative semi-structured interviews were conducted and analysed using thematic analysis.
30 mothers of children with a life-limiting condition were recruited via 3 UK children’s hospices and social media.
Mothers caring for children with life-limiting conditions often felt that healthcare professionals misunderstood their health concerns. They described receiving support that was poorly timed or inappropriate, which didn’t reflect the realities of their caregiving role. As a result, many mothers were hesitant to speak up about their own health needs.
They struggled to prioritise their own well-being, often putting their child’s needs first and worrying about who would care for their child if they became ill themselves. The stress they experienced came more from dealing with healthcare and support services than from the caregiving itself.
Mothers felt better able to manage their health when they were recognised and respected as caregivers. Hospice services, in particular, were seen as especially helpful in this regard.
Conclusion: There is a need for a more coordinated system that not only understands the unique challenges faced by mothers of children with life-limiting conditions, but also values the role of palliative care in supporting these mothers.
Read the published report below.
Download the report