Crisis prevention rather than crisis management: the health of mothers of children with a life-limiting condition

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 will address that gap. It will 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. It will also assess whether a psychological intervention, shown to work in the general adult population, could be adapted and is acceptable and practical for these mothers and therefore whether its effectiveness can be tested in a full-scale trial.

To achieve these aims, first, data that are routinely collected by General Practitioners (linking mothers and children) will be analysed and the extent of physical and psychological health conditions in these mothers will be measured in order to look at the relationship between key points in the child’s disease (e.g. time of diagnosis or admission to intensive care) and the mother’s health.

Second, to obtain more in-depth information about the nature of these health conditions and explore who should be providing the care for these mothers and how, mothers of children with a life-limiting condition will be interviewed as well as health care providers (e.g. GPs, paediatricians).

The results of the first two stages will give information on the nature and extent of physical and mental health conditions in these mothers, key information for the next two stages of this research. In the third part of this Fellowship, the published research will be reviewed in order to identify interventions which have been used to prevent or treat the most important mental and physical health conditions found in work streams 1 and 2.

The last part of this study will focus on a testing the psychological intervention and will involve testing the intervention in a small group of mothers to assess the acceptability, appropriateness and practical issues of delivering this intervention in this population and the feasibility of undertaking a full scale trial.

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.

Funding

Funder: NIHR Career Development Fellowship
Start Date:  January 2019
Expiry Date:  December 2023

Members

Internal staff

Public Health and Society Research in the Department of Health Sciences