- New study explores the mental health of informal and family carers for children and adults with intellectual disabilities under lockdown
- Almost half of carers of adults and children with intellectual disability report feeling major depression and severe anxiety; far more than in families where no one had an intellectual disability.
- Carers of adults and children with intellectual disability were five times more likely to report severe anxiety and between four and ten times more likely to report major depression than parents of children without intellectual disability.
- These levels were significantly higher than those found in similar pre-lockdown studies
- Carers of children with the greatest levels of challenging behaviour get the least social support from friends, neighbours and local support groups
- Government urged to make better provision for carers in any future lockdown, including maintaining access to respite and encouraging ‘good neighbour’ support.
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.
The study, Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities (Journal of Applied Research in Intellectual Disabilities), also finds that carers of children and adults with intellectual disability reported mental health problems well in excess of what might have been expected on the basis of the pre-pandemic literature, and at the same time experienced lower levels of social support relative to parents of children without 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.
Professor Peter Langdon of Warwick’s Centre for Educational Development, Appraisal and Research (CEDAR) has been one of a team, working in partnership with the Challenging Behaviour Foundation 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 Birmingham 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.
Carers of children and adults with intellectual disability reported significantly greater anxiety and depression than carers of neurotypical children. These feelings were worsened by stress but improved by social support.
- 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 intellectual disability.
- Social support – compared to parents of children without intellectual disability, carers of children with intellectual disability received significantly more support from professionals, but significantly less support from other sources, particularly family (parents, children, other relatives) and friends (friends/co- workers, neighbours/local community). Social support decreased as the severity of challenging behaviour increased.
- 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.
The results were compared with similar studies conducted before the pandemic to explore whether the high rates of severe mental health problems were associated with the lockdown.
The authors commented: “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 over and above any pre-existing mental health problems, and to a greater extent than parents of people without disabilities, in line with the general picture that the pandemic has amplified existing inequalities.
“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.”
Among the suggestions put forward in the report to better support carers are:-
- Long term consistent support for carers from a named key worker
- More nurses trained in learning disabilities issues, with carers’ mental health as part of their remit
- More respite provision, and a policy commitment to maintain access to respite through any future lockdowns
- Professional services better equipped to offer support to carers remotely via phone or online
- Access for carers to specialist mental health support
- Peer support groups for carers
The authors concluded: “it will be essential to consult families as to what else might help, so that support can be planned and implemented well in advance of it next being needed.”
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. DOI: 10.1111/jar.12811
- Professor Paul Willner University of Swansea email@example.com
- Professor John Rose University of Birmingham J.L.ROSE@bham.ac.uk
- Dr Biza Stenfert Kroese University of Birmingham B.Stenfert-Kroese@bham.ac.uk
- Professor Glynis Murphy University of Kent G.H.Murphy@kent.ac.uk
- Professor Peter Langdon University of Warwick Peter.Langdon@warwick.ac.uk
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