Summary
Effect of the COVID pandemic & control measures on carers of people with intellectual disabilities (EPoC)
BACKGROUND
The social distancing and isolation measures in place to manage the current pandemic are known to impair mental health. People with intellectual disabilities (ID) are a group at specific risk during the COVID-19 pandemic because of marked mental and physical health multi-morbidity, as recognized by recently published government guidelines directed at their carers. Caring for people with ID is stressful, leading, even in good times, to high levels of stress and burnout and it is likely the burden of greater care demands exacerbates the anxieties and practical difficulties created by the pandemic and the measures in force to control its spread.
While the difficulties experienced by paid care staff during the current crisis have attracted extensive publicity, little attention has been paid to the situation of family and other unpaid and informal carers. It is well known that stress is buffered by social support and it is likely that the dilution of social support in the current circumstances is particularly severe for informal carers of people with ID because their access to professional support and services such as respite is much reduced.
AIM
Our aim is to track the mental health of family carers of people with intellectual disabilities (ID) through the course of the pandemic and to relate mental health outcomes to the extent of social support available to them and their coping strategies.
It is not possible to measure the increase in stress caused by the onset of the pandemic, but the study will measure changes in mental health as control measures are relaxed or re-imposed, and the extent to which mental health improves as the pandemic ends. We will ask whether the effect of the pandemic on informal carers of children with ID differs from the effect on carers of children without disabilities, and whether the pandemic impacts differently on informal carers of children and adults with ID.
STUDY DESIGN
This is a mixed-methods longitudinal observational study with three groups of participants.
Participants will complete an online survey comprising a demographic questionnaire describing their household, followed by short measures of mental health (anxiety, depression and burden), coping styles, and social support. The assessment will be repeated at two-three-monthly intervals or following significant relaxation or re-imposition of control measures. A small group of participants will be invited to participate in a short telephone interview at baseline and towards the end of the study.
To take part participants must fulfil the inclusion criteria, which are:
- Aged 18 or over
- Living in the UK
- The primary provider of care for either:
- a child with ID (below age 18)
- an adult with ID (above age 18)
- or for the comparison group, a child without disabilities (below age 18)
- Access to the internet and comfortable with answering a survey online
If you fulfil the eligibility criteria and would like to complete the survey, please click the link.
https://redcap.swan.ac.uk/surveys/?s=DELXH79K9A
Recruitment will be from the general public, via ID charities and social media. At the end of the first completion of the survey, participants will be asked if they are willing to undertake repeat surveys and/or to be interviewed.
We are aiming for a minimum of 80 participants per group who agree to repeat the survey, which may require an initial sample of several hundred participants per group. Up to 10 participants per group will be interviewed in each of two waves.
Contact Details
Trial Manager / Lead Contact: Professor Paul Willner
Email: p.willner@swansea.ac.uk