Father carers' experiences

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.

For more information, please contact Kirsty Dunn

Link to publication https://onlinelibrary.wiley.com/doi/full/10.1111/jar.12791

Page updated September 2020