Predictors of mental ill-health in mothers caring for a son or daughter with intellectual disabilities

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.

Third Sector organisations: The proposed research will help our third sector partner, PAMIS, to tailor the support it provides to its carer members by producing a report on the research findings highlighting the pivotal points where carers' mental ill-health is at risk. PAMIS will use the research findings to discuss with its members the necessary steps required to prevent/ameliorate mental ill-health. Other third sector organisations have and will be approached to hear about the research and to be involved with dissemination of research findings and attending workshops.

Carers: PAMIS will recruit two parent carers to attend advisory committee meetings to ensure co-production of knowledge with research users. A DVD will be produced in collaboration with PAMIS and parent carers to share the research findings, the experiences of being a carer and what steps can be taken to address mental ill-health. The DVD will be disseminated widely (hard copies to (e.g. carers, carer organisations) and link to video on social media/PAMIS, University of Glasgow and Scottish Learning Disabilities Observatory websites) to raise national and international awareness of mental ill-health in parent carers. The involvement of carers is essential as their expertise is invaluable. Carers will benefit from gaining transferable skills including research skills, organising workshops and decision making as part of a wider team.

People with intellectual disabilities: Helping carers will not only prevent their unnecessary suffering, it will also help the wellbeing of the son or daughter they care for, and may break the vicious spiralling circle that their inter-dependent relationship can effect. People with intellectual disabilities will be invited to dissemination workshops and accessible findings will also be produced.

Health & public policy makers and Service commissioners:Findings will inform policy-makers and service commissioners what formal supports mothers need in order to address/prevent mental ill-health. Workshops will be organised in collaboration with PAMIS to inform policy makers, academics, the public, other potential beneficiaries and users of research about our project and to discuss the next steps in taking these findings forward in order to reduce mental ill-health in this group of carers. It is hoped that active steps will be taken to enhance the health and quality of life of parent carers by increasing the effectiveness of current public services and policy. We hope, for example, that it will provide impetus for change in public spending, from a focus almost entirely on coping with crisis (Balmer, 2015), to an investment in preventive or anticipatory strategies.

Health & Social Care: Findings will inform professionals about mental ill-health, which will in turn, help them to support mothers at pivotal points in the caregiving trajectory including post caregiving, thus leading to improvements in future care, quality of care and improved quality of life for carers.

Academics with an interest in mental health, intellectual disabilities, health informatics, public health or social sciences (nationally and internationally): Findings will demonstrate the success and necessary steps in using a novel and highly cost effective method to address important and overdue questions on mental ill-health, an area that is of international importance. This research adds a significant contribution within the caregiving and intellectual disability literature, addressing an area that has previously received little attention. Findings will be presented at national and international conferences and it is anticipated that this will lead to future collaborations across different organisations on taking these findings forward.

The government: We will liaise with the press and produce project press releases to publicise project findings at key points when it could influence government legislation.