Little research has investigated maternal-carer mental ill-health at different stages of caregiving, including following the death of offspring with learning disabilities. The aim of this paper was to investigate the prevalence and factors associated with mental ill-health in mothers caring for offspring with learning disabilities, both overall and at different stages of caregiving, including after the death of an offspring
We carried out a population cohort study of 9,787 mothers of offspring with learning disabilities, matched with 30,235 mothers of offspring without learning disabilities. This was a secondary data analysis and data linkage of administrative and health records.
Mental ill-health was ascertained from three sources (self-report (Scotland’s Census 2011), medications (Prescribing Information System), hospital admissions (SMR04)), in which the mother is considered as having a mental health condition if at least one of the sources confirms so. For outcomes following the death of the child (National records Scotland) post Census 2011, mental health of the mothers was assessed on medication use and psychiatric hospital admissions only.
• Mothers of offspring with learning disabilities were more likely to experience mental ill-health compared to mothers of offspring without learning disabilities.
• Among mothers of offspring with learning disabilities, those who had mental ill-health were more likely to experience long term health problems and experience poorer socioeconomic circumstances (e.g. greater neighbourhood deprivation) compared to those who did not have mental ill-health.
• Mental ill-health was similar for mothers whose offspring with (40.5%) or without learning disabilities (38.3%) had died.
Support for maternal carers is needed throughout the caregiving journey, given the high rates of mental ill-health.
Kirsty is a Lecturer in Clinical Psychology at the University of Glasgow, and is an affiliate of the Scottish Learning Disabilities Observatory, having joined the team in 2015. She is interested in the health and wellbeing of individuals with learning disabilities and their families. Previously, Kirsty has worked on projects examining patterns of hospital admissions, prevalence of physical and mental health conditions, and the impact of caring for a son/daughter with learning disabilities on fathers. Her current research projects are exploring: The impact of bullying on young people's mental health Common mental health conditions experienced by children and young people Patterns of long-term health conditions and prescribing in adults
Deborah is the Director of the Scottish Learning Disabilities Observatory and Professor of Health and Neurodevelopmental Conditions, in the School of Health and Wellbeing, at the University of Glasgow. Deborah is passionate about her research which aims to improve the health of people with learning disabilities and their families. She has worked on many different projects about people with learning disabilities including: cancer incidence, cancer screening, multi-morbidity (having two or more health conditions), oral health and COVID-19, to name a few. She has also worked on projects about the physical and mental health of family members who support someone with a learning disability. Deborah is committed to conducting research that has impact and works closely with self-advocates with learning disabilities, family carers and third sector organisations who are pivotal in all of her work and who have a shared vision of ensuring the human rights of all people with learning disabilities are recognised, supported and upheld. Read more about Deborah here.
Ewelina is an Affiliate Associate Researcher with the Scottish Learning Disabilities Observatory. Ewelina's work with the Observatory focused around health inequalities and the health needs of people with autism. She is now based at the University of Edinburgh School as a Lecturer in Health Futures at the Edinburgh Futures Institute and School of Health in Social Science.
Anna set up the Scottish Learning Disabilities Observatory with funding from the Scottish Government. She wants the Observatory to make Scotland fairer and healthier for people with learning disabilities and their families, by: Finding out the health problems people have Finding out how good or bad health care is Telling people about health and health care problems Finding ways to make health and health care better Checking if health gets better or worse over time Helping the Scottish Government, and staff who provide health and social services, to get it right for people with learning disabilities Anna is a doctor. She has done a lot of studies on the health of people with learning disabilities. Anna’s full name is Professor Sally-Ann Cooper.
