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 National Health Service (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 programme of research utilises the ability to link mothers and their children's healthcare data in the Clinical Practice Research Dataset (CPRD) dataset. We will describe the types of physical and psychological health conditions diagnosed in mothers of children with a life-limiting condition, the prevalence of depression and anxiety in children and young people with life-limiting conditions, and the impact that treating these condition has on NHS resources.
There are now nearly 50000 children with a life-limiting or life-threatening conditions (LLC) 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 LLC involves being a coordinator and provider of healthcare in addition to the responsibilities and pressures of parenting a child who is expected to die young. This adversely affects the health and wellbeing of these mothers and affects their ability to care for their child, but the extent of the impact is poorly understood. The impact on the mental health of the children with a LLC, and the need for interventions, is also poorly understood.
Research Questions (RQs):
When compared to mothers of other children (WP1):
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. What are the healthcare resource use for mothers of children with a LLC?
When compared to other children (WP2):
4. What is the incidence of anxiety and depression in children and young people with a LLC?
5. What is the impact of maternal mental health on the mental health of the children with a LLC?
6. What clinical and demographic factors are associated with the incidence of anxiety and depression among children and young people with LLCs?
7. What is the healthcare resource use of children with a LLC?
Analyses :
Diagnostic codes will be used to identify the children with LLC, and chronic disease and the key outcomes in the CPRD and hospital datasets. Incidence rates and incidence rates ratios will be used to quantify and compare the outcomes between groups with multivariable regression modelling used for the other key RQs.
Workpackage 1: Focus on Mothers
Maternal mental health diagnoses, including both common mental illness and severe mental illness. These will be identified using diagnostic READ codes and relevant prescription data. A previously developed READ
code algorithm [1] will be utilised. The linked MHMDS will identify more serious mental health conditions.
Maternal physical diagnoses, including e.g. obesity, hypertension, musculoskeletal problems, and cardiovascular disease. These will be identified using diagnostic READ codes, relevant prescription data, HES data, and related biometric data (including blood pressure, BMI, and total cholesterol).
Referrals to other services, especially secondary services for mothers.
Uptake of cervical screening by mothers.
The number of primary care attendances (GP, practice nurse etc) per year by mothers
The number and nature of prescribed medication for mothers.
The number of A&E attendances, hospital admissions and length of stay for mothers.
Workpackage 2 : Focus on Children
Diagnosis of anxiety or depression in the children will be identified via diagnostic READ codes, prescription data and referral to relevant secondary and community services.
The number of A&E attendances, primary care attendances (GP, practice nurse etc) per year by children.
The number and nature of prescribed medication for children.
The number of hospital admissions and length of stay for children.
Lorna K Fraser - Chief Investigator - University of York
Lorna K Fraser - Corresponding Applicant - University of York
Catherine Hewitt - Collaborator - University of York
Fliss Murtagh - Collaborator - Hull York Medical School
Mary Barker - Collaborator - University of York
Simon Gilbody - Collaborator - University of York
CPRD Mother-Baby Link;HES Accident and Emergency;HES Admitted Patient Care;HES Outpatient;Mental Health Services Data Set (MHSDS);ONS Death Registration Data;Patient Level Index of Multiple Deprivation;Practice Level Index of Multiple Deprivation