Father carers' experiences

Families and Carers | Last Updated: 24 Feb 26

Background

While carers in the UK are generally more likely to be female than male, research has suggested that men participate more in caregiving as they age. Traditional gender roles within UK households are also changing, and while fathers may often remain the secondary carer, their participation in childcare has increased over time. Older fathers of a son or daughter with learning disabilities may experience particular challenges that are different from mothers. For example, older male carers have been found to be less likely to ask for necessary help and support than older female carers, and report feeling excluded from support groups or services which are predominantly attended or accessed by women.

What we did

In order to learn more about their experiences, we conducted interviews with 7 Scottish fathers aged 65 years and above who had a son or daughter with learning disabilities.

What we found

The majority of fathers described themselves as being the main breadwinner while their wife performed the bulk of caregiving tasks. This was also true of fathers who had retired. One father noted, “I’m more of an aide de camp for Amy [wife]. I think most husbands are.”

‘Fighting the system’ in order to obtain adequate support and resources was identified as the most stressful aspect of parenting their son or daughter with learning disabilities. Fathers were starting to plan for their offspring’s future and accept that there would eventually come a time when they could no longer look after them. Those who had begun to make such plans were surprised and highly frustrated by the amount of time it took to do this: “...been at this for over 10, nearly 12 years, since we first started making enquiries.”

While fathers admitted that there had been periods of extreme stress, most emphasised that the positives had far outweighed the negatives. Fathers felt that they had become more considerate and caring people, and that their whole family had benefitted from the experience: “Mark is Mark, and Mark has enriched our family in a way that would never have happened had he not been Mark.”

What these findings mean

These results suggest that gender roles within the household may not have changed for older fathers of a son or daughter with learning disabilities. Despite identifying as secondary carers, the fathers in this study experienced high levels of stress when engaging with services. They argued that there needs to be timely planning with families, to avoid crisis situations arising when parents are no longer able to support their offspring. Rather than focussing solely on vulnerability to mental ill-health, the benefits that fathers derived from caring for their son or daughter suggests that future research should also consider how positive experiences can be supported.

Project information last updated September 2020.

Team member(s) involved in this research

Dr Kirsty Dunn

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

Professor Deborah Cairns

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.

Professor Andrew Jahoda

Andrew Jahoda is a Professor of Learning Disabilities in the School of Health and Wellbeing at the University of Glasgow. He also has an honorary position as a consultant clinical psychologist with NHS Greater Glasgow and Clyde. Andrew has worked at Glasgow University since 1998. His research interests concern the mental health and wellbeing of people with intellectual disabilities. This includes work about the impact of stigma and ways of promoting inclusion. Another strand of research is about adapting psychological therapies like Cognitive Behavioural Therapy and behavioural activation for people with learning disabilities, to make them more accessible and sensitive to people’s lived experience.