Title: Crisis Prevention rather than Crisis Management; the Health of Mothers of Children with a Life-Limiting condition
Funder: Department of Health and Social Care

Abstract: The number of children with a life-limiting or life-threatening conditions has been rising; there are now nearly 50,000 children with a life-limiting condition in the UK. These include conditions where there is no reasonable hope of cure and from which they will die, as well as conditions for which curative treatment may be feasible but can fail, e.g. cancer or heart failure. Having a child with a life-limiting condition involves being a coordinator and provider of healthcare as well as a parent 24/7 and the pressure of knowing their child is expected to die young. This adversely affects the health and wellbeing of these mothers and affects their ability to care for their child. Recent NICE guidance on End-of-Life care in children and young people highlighted the lack of research on parental psychological health and support needs. Research Questions:1.What is the nature and incidence of mental and physical morbidity in mothers of children with a life-limiting condition? 2.What is the relationship between the health of the mother and the child's condition? 3.How are mental and physical health care needs of mothers of children with life-limiting conditions best addressed? 4.What interventions are likely to be most effective in preventing or managing these mental or physical health conditions? 5.Is it feasible to deliver a psychological/mental health intervention in this population of mothers? Methods Workstream 1 (RQ 1 & 2) will utilise secondary analyses of routinely collected longitudinal primary and secondary care (CPRD and HES linked) data which can link mothers and children. Workstream 2 (RQ 2 & 3) will utilise face-to-face interviews with mothers of children with a life-limiting condition to explore their mental and physical health, preventative and exacerbating factors and the relationship between their own health and their child's illness. Interviews with healthcare professionals will elicit their views on their role and that of their service in caring for these mothers and explore barriers or facilitators to providing effective care. Workstream 3 (RQ4) will map all available interventions for the mental and physical health conditions identified in workstream 1 and 2 and identify an intervention likely to be effective and feasible in this group. Workstream 4 (RQ 5) will assess the feasibility of a psychological intervention to protect the mental health of these mothers. The intervention will be undertaken with ~ 20 mothers to assess the acceptability, appropriateness and feasibility of delivering this intervention in this population. Along with the results of workstreams 1 and 2, further data collection using focus interviews and session logs will be collected and analysed to assess the feasibility of a full scale RCT. Outputs include quantification of mothers' health care needs, their experiences of care and their views which will all inform the development of an intervention focused on their psychological health and the protocol of a full scale RCT to test it. Results will be disseminated via professional and parent facing organisations as well as clinical and academic routes.

Lay abstract: 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. My research will address this gap. I 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. I 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 I can test its effectiveness in a full-scale trial. To achieve these aims, firstly I will analyse data that are routinely collected by General Practitioners (linking mothers and children) and measure the extent of physical and psychological health conditions in these mothers. I will 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, I will interview mothers of children with a life-limiting condition and also 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, I will review the published research 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.

Research activity codes: 2.3 PSYCHOLOGICAL, SOCIAL AND ECONOMIC FACTORS;7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE