Award Title: Predictors of mental ill-health in mothers caring for a son or daughter with intellectual disabilities
Funder: Economic and Social Research Council

Abstract: The main objective of this pioneering research is to take advantage of Scotland's rich informatics environment, linking large datasets to determine the prevalence and determinants of mental ill-health of mothers caring for a son or daughter with intellectual disabilities and mothers post caregiving, across social classes. The proposed research will provide unique insights into the multiple social determinants of health that impact on health outcomes of maternal carers and contribute to building the empirical evidence on intersectionality.  With this information, important and overdue questions on mental ill-health, and the complex dynamics of inequality, can be addressed which will subsequently identify gaps in current services and provide evidence to support the design of professional support for mothers at pivotal points in the caregiving trajectory including post caregiving. 

Secondary objectives:

To enrich our understanding of the complex interrelationship between socio-economic factors and caregiving by drawing on big data. 

To demonstrate the opportunity that this linked data affords for addressing the significant gaps in research about the health and health care of people with intellectual disabilities and their family members.

To demonstrate the fundamental value of having a question on 'intellectual disabilities' within Scotland's Census with the hope that other countries within the UK and internationally will include a similar question in future Censuses. Doing so will provide valuable opportunities to access a wealth of data on the health and wellbeing of people with intellectual disabilities and their family members.

Lay Abstract: An increasing number of parents in Scotland are continuing to care for their son or daughter with intellectual disabilities (an individual with an intellectual impairment and impaired social functioning which started before adulthood, with a lasting development) over a prolonged period of time. This is due to improvements in medical technology, health care, nutrition and the movement away from institutional to community care. While caregiving can be an extremely positive and rewarding experience, it can also have a negative impact on the mental health of parent carers at various points in the caregiving trajectory (i.e. across the life cycle - caring for a child (0-15 yrs), adult (16 - 54yrs), older adult (55+ yrs*) including after the death of a son or daughter with intellectual disabilities (described hereafter as 'post caregiving'). 

Small scale research suggests that mothers caring for a son or daughter with intellectual disabilities, as opposed to fathers and other carer groups, report poorer mental health potentially making them more susceptible to depression and anxiety. However, there is a dearth of robust research in this area. Scotland's Census 2011**, provides a unique opportunity to identify the mental health of mothers' caring for a son or daughter with intellectual disabilities. This is the only known whole population census in the world whereby mothers with a caring role can be identified, as can households with a child or adult with intellectual disabilities, enabling the individual characteristics of both mother and child to be linked.  Scotland's Census 2011 will also be linked to information from different sources (routinely collected health records) to better understand the mental health of mothers at different stages of caregiving, including post caregiving.
 
Aims: To investigate the prevalence and determinants of mental ill-health in mothers caring for a son or daughter with intellectual disabilities, both overall and at different stages of the caregiving trajectory, including post caregiving.

Methods: The proposed study aims to take advantage of Scotland's rich informatics environment and datasets to benefit mothers caring for a son or daughter with intellectual disabilities and mothers post caregiving, through data linkage and secondary analysis of routinely collected health data. We will link datasets that tell us about: mothers self-reported mental ill-health (Scotland's Census 2011); use of medications for depression and anxiety (Prescribing Information System) and; hospital admissions for mental ill-health (Scottish Morbidity Records).  It is also important to identify possible reasons for mental ill-health (e.g. socio-economic factors such as household structure, employment status, number of children in household), so these can be addressed. Linking these datasets will allow us to investigate how common mental ill-health is in mothers caring for a child, adult or older adult with intellectual disabilities or post caregiving, and additionally, compare this with matched women who do not have this caring role. 

The proposed study provides a highly cost effective method to address important and overdue questions on mental ill-health and will subsequently provide evidence to inform professionals to support mothers at pivotal points in the caregiving trajectory including post caregiving. It will also provide valuable insight on the impact of the broader social context on mental ill-health. 


* 'Older adults' are categorised as individuals 55+ years of age as it is generally accepted that individuals with intellectual disabilities, not just people with Down syndrome, show signs of premature ageing.
** Scotland's Census 2011: the only comprehensive consistent source of national and local data about people, their key characteristics, and household composition.

Research Activity Codes: 2.4 SURVEILLANCE AND DISTRIBUTION
Health Categories: MENTAL HEALTH