The health of mothers of children with a life-limiting condition
Research type
Research Study
Full title
Crisis Prevention rather than Crisis Management; the Health of Mothers of Children with a Life-Limiting condition – workstream 2 and 3
IRAS ID
282027
Contact name
Lorna K Fraser
Contact email
Duration of Study in the UK
1 years, 6 months, 31 days
Research summary
Research Summary
More children and young people are now living with medical conditions that may ultimately shorten their life (life limiting conditions) and cause death in childhood or young adulthood. Mothers of children with a life-limiting condition commonly end up being a coordinator and provider of healthcare for 24 hours a day, 7 days a week. The health of these mothers is important, both for their own well-being, and for their ability to care for their child.
Services for these children within the NHS and the statutory services rarely provide support for the parents or other family members. Mothers of children with a severe health condition or whose child has died are more likely themselves to die earlier than other mothers; this raises questions about their physical health.
Recent national guidance on End-of –Life care of children and young people from the National Institute for Health and Care Excellence highlighted the lack of research assessing the effectiveness of services or interventions to support the psychological health of parents or carers of children with a life-limiting condition.
This research aims to describe the types of physical and psychological health conditions diagnosed in mothers of children with a life-limiting condition and assess how these mothers feel their health should be supported and by which services.
In order to obtain in-depth information about the nature of these health conditions and explore who should be providing the care for these mothers and how, we will interview mothers of children with a life-limiting condition and also undertake group interviews with health care providers (e.g. GPs, paediatricians).
We will then review the published research to identify interventions which have been used to prevent or treat the most important mental and physical health conditions identified in these interviews. The findings of these reviews will be discussed at a workshop with key stakeholders including parents and professionals to decide which of these interventions should be tested in the final stage of this study.
Parents of children with a life-limiting condition have helped in the design of this study, highlighting important examples of difficulties with their health and the impact on their ability to care for their child. Parents will be involved in the study in several ways including: membership of the steering group, development of the topics to discuss during interviews, interpretation of findings and the design and content of parent-facing research summaries.
The results will be communicated to parents, professionals and service providers via parent and professional organisations as well as through academic journal articles and presentations at conferences.Summary of Results
More children are living with conditions that may shorten their lives, known as life-limiting conditions. The parents of these children, most commonly mothers, end up providing and coordinating all their child’s care needs. These mothers have higher rates of common and serious physical and mental health problems than other mothers but there is little research that has explored how best to support them. research:
This study involved in-depth interviews with mothers of children with a life-limitingcondition. 30 mothers were interviewed and were asked questions about their own health, including who by and how they felt their health should be supported. Findings show that these mothers felt their own health concerns could be overlooked or misunderstood by professionals. They described stress as a result of battling with services, for example for equipment, rather than as a direct result of caregiving. These battles could go on for many months or years. They felt that many did not recognise what it was like looking after a child with a life-limiting condition, meaning that the support they were offered wasinappropriate. Mothers also found it difficult to prioritise their own needs alongside their child’s. There needs to be more recognition of the demands of providing complex care when supporting mothers’ own health and wellbeing. Enabling mothers to seek support alongside their child’s care seems to be important. This support needs to recognise the close relationship between maternal health and the needs of their child. Future research should focus on how best to integrate appropriate means of support alongside the care of the child.REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
20/NE/0164
Date of REC Opinion
2 Jul 2020
REC opinion
Further Information Favourable Opinion