Assessing the mental health of parents caring for a son or daughter with learning disabilities: secondary data analysis of Scotland’s Census 2011
An increasing number of parents in the United Kingdom (UK) are continuing to care for their son or daughter with learning disabilities over a prolonged period of time. While caregiving can be an extremely positive and rewarding experience, it can also have a negative impact on the general and mental health of parent carers. To date there has been a gap in the research which looks at the health of this group of adults in Scotland. By analysing Scotland’s Census 2011, we can identify the general and mental health of parent carers. This is now possible as Scotland’s Census 2011 provides information about long-term problems, including learning disability, which provides a unique opportunity to analyse data about the whole population of people with learning disabilities and their carers’.
Aims and Objectives
This study will help us to better understand the general and mental health of parent carers of a son or daughter with learning disabilities. With this information, parent carers can be provided with the right information at the right time about the supports available locally and nationally and the range of help to support them (including training and advice) to look after their son or daughter with an learning disability and access professionals who can help them, all of which is highlighted in Scotland’s Keys to Life strategy.
A poster on this project can be viewed below.
Page updated 1 May 2018
Father carers' mental health
This project examines the mental health of fathers of a son or daughter with learning disabilities. More fathers are now taking an active caregiving role within the family and yet there is very little research in this area. This project will increase our understanding of the mental health of father carers living in Scotland. It is important to investigate the mental health of father carers and their experiences of supports and services, as this may inform service providers and policy makers about how they can better support fathers.
Phase 1 The mental health of fathers of a son or daughter with learning disabilities: A systematic review
There is a growing body of research on the mental health of mothers who care for a son or daughter with learning disabilities. As research in this area has primarily focused on mother carers, much less is known about fathers. It is particularly important to learn more about the impact on fathers as they are increasingly taking a more active caring role within the family.
This project aimed to review the existing research in this field and determine if the mental health of fathers of a son or daughter with learning disabilities is different from mothers or other fathers in the general population.
A systematic review of the existing literature was carried out using a range of databases from January 2001 to January 2017. The search was conducted using key words relating to learning disabilities, mental health and fathers. Articles were selected based on their relevance to the research. A selection of the identified articles was checked by a second researcher, for quality assurance.
After completing the search, and removing duplicate articles, 5,544 papers were initially identified. Seven of these papers had appropriate data to be included in the study. There was not enough data available in these studies to compare the mental health of father carers with fathers in the general population.
As papers examined different measures of mental health, the included papers were divided into those which measured depression, stress, anxiety, and general mental health. The papers showed that fathers reported significantly lower levels of depression, anxiety, stress and general mental ill-health than mothers.
The results indicated that there is a significant difference between studies comparing mental health of father and mother carers, with fathers exposed to a lower risk of depression, anxiety, stress or poor general mental health.
Included studies used a variety of outcome measures, making direct comparisons between the papers difficult. Degree of challenging behaviour was not reported by the majority of the included studies, and this is a notable omission as the literature demonstrates the impact of challenging behaviour on parental mental health. Financial resources were also not taken into account by all the included studies, and where this was considered the measures varied between studies from ‘employed/unemployed’ to level of socioeconomic deprivation.
It was also not possible to generate accurate age categories as many of the included papers did not report the age of their sample, and those that did focussed predominantly on middle aged parents. It is likely that fathers experience different levels of poor mental health throughout the caregiving journey, and so the results of this meta-analysis may only apply to fathers in middle age, rather than younger or older father carers. More research is needed to explore these issues, as well as other factors which may impact the mental health of father carers.
Phase 2 The experience of caring for a son or daughter with learning disabilities: older father carers perspectives
A recently-conducted systematic review revealed a gap in the literature on the mental health of fathers caring for a son or daughter who has learning disabilities. This gap was particularly evident for older fathers.
This study aims to gain insights into the mental health and experiences of older fathers (aged 60+) who have an adult son or daughter with learning disabilities through semi-structured interviews.
Semi-structured interviews were conducted with seven fathers who had a son or daughter with learning disabilities.
Five themes were identified. 'New beginnings': Fathers' initial experiences of becoming not only a parent but a parent of a child with intellectual disabilities. 'It's been a battle all the way': Fathers came to accept their child's intellectual disabilities, became acquainted with their child's needs and fought to fulfil these. Changing hats': fathers' sense of identity had altered over the years. 'Family comes first': great importance placed on the family unit. 'Getting on in years': ageing fathers and challenges of caring for their child. These categories made up the core components of the theoretical model 'life through a different lens'. This model addresses how older fathers' lives, world view, and future have been impacted by their child with intellectual disabilities.
Parenting a child with intellectual disabilities resulted in fathers re-evaluating their priorities , learning from their child, and growing as a person. Reflecting back on their parenting journey, fathers drew strength from the benefits they had derived and the challenges that they had overcome to do their absolute best for their child and their family.
Phase 3 Assessing the mental health of fathers caring for a son or daughter with learning disabilities: secondary data analysis of Scotland’s Census 2011
The Scotland Census 2011 provides a unique opportunity to learn more about father careering for a son or daughter with learning disabilities across the whole of Scotland as a result of including a question on ‘learning disabilities’. From the census, we can also identify which of these individuals are cared for solely by their father or by their father alongside another carer, and which of these fathers reported mental health problems.
With this information, important and overdue questions on mental ill-health can be addressed which will subsequently help to identify what services are required to ensure appropriate support mechanisms are put in place to better support the needs of father carers. Increasing our understanding of the mental health of father carers of a son or daughter with intellectual disabilities will also provide the evidence to inform policy makers in order to make change.
Aims and Objectives
The aim of this study is to investigate the prevalence and determinants of mental ill-health in fathers caring for a son or daughter with learning disabilities.
Data will be analysed from Scotland's Census 2011, and descriptive statistics will be generated about father carers of a son or daughter with learning disabilities.
Page updated 24 July 2019