Family carers for children and adults with intellectual disabilities have reported rates of mental health problems under lockdown that are up to 10 times higher than parents without those responsibilities, a new study has found. 

They were five times more likely to report severe anxiety, and between four and ten times more likely to report major depression, compared to parents who did not have caring responsibilities for children with intellectual disability.

The challenges faced by informal carers – usually mothers – of children and adults with intellectual disability have been largely overlooked during the coronavirus crisis.

Dr Biza Stenfert Kroese and Professor John Rose, of the School of Psychology at the University of Birmingham, have been one of a team, working to document the mental health of informal carers of children and adults with intellectual disability during the coronavirus pandemic through an online study. The project team was led by Professor Paul Willner from the University of Swansea and included researchers from the Universities of Warwick and Kent.

The team analysed 244 online surveys, which were completed during the strict lockdown period by carers of adults with intellectual disability, of children with intellectual disability, and a comparison group of carers for children without intellectual disability. 

More than 90 per cent of the carers taking part were female. Eleven households had had direct experience of COVID-19.

Key findings were:

  • Moderate to severe anxiety - 43% of carers of children with intellectual disability reported this, compared with 8% of parents of children without intellectual disability.
  • Moderate to severe levels of depression were reported by 45% of carers of children with intellectual disability, compared with 11% of parents of children without.
  • Major depression was found in 31% of carers of children with intellectual disability but only 3% of parents of children without intellectual disability. 
  • Social support – compared to parents of children without intellectual disability, carers of children with intellectual disability received significantly less support from other sources, particularly family and friends – despite their greater needs.
  • No respite: carers for adults with intellectual disability; the closure of adult day services and respite care meant that this group felt they had significantly less support than carers of children, who could still send their children to school if they wished.

Professor Paul Willner of Swansea University, head of the project, said: "It is likely from these data that the mental health of carers of children and adults with intellectual disability has been adversely affected by the pandemic. This effect is over and above any pre-existing mental health problems.  They are also affected to a greater extent than parents of people without disabilities but are less well supported.  Our findings are one illustration of how the pandemic has amplified existing inequalities.”

The authors make recommendations on supporting carers better, including:

  • Long-term consistent support from a named key worker
  • More nurses trained in learning disabilities, with carers’ mental health in their remit
  • More respite provision, to be continued through any further lockdowns
  • Services better equipped to offer support to carers remotely via phone or online
  • Access for carers to specialist mental health support
  • Peer support groups

Professor Willner added: “We should acknowledge the essential role played by informal carers and take steps to ensure they are appropriately and proactively supported. There are significant costs for the carers themselves and for society more generally if mental ill health robs them of their ability to continue providing care for their loved ones.”

Dr Kroese says: "We were very much struck by the seriously stressful plight of many carers during lockdown and the negative consequences for their mental health. We are currently analysing the data that were collected from a smaller sample of these carers who we interviewed to find out more about their experiences and views. It is our hope that this research will complement the larger study and that both will have some impact on local and national policy to ensure that carers are better supported during future lockdown."

The research was published in the Journal of Applied Research in Intellectual Disabilities.

For media enquiries please contact Beck Lockwood, Press Office, University of Birmingham, tel: +44 (0)781 3343348.

Willner, P., Rose, J., Stenfert Kroese, B., Murphy, G.H., Langdon P.E., Clifford, C., Hutchings, H., Watkins, A., Hiles, S. and Cooper, V.  (2020).  'Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities.'  Journal of Applied Research in Intellectual Disabilities

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