ArticleBMC public health2022
Impact of the COVID-19 pandemic on family carers of those with profound and multiple intellectual disabilities: perspectives from UK and Irish Non-Governmental Organisations.
Article in BMC public health, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed, 13 citations in OpenAlex.
- Unraveling the complexities: A scoping review of the collateral effects on informal caregivers during and beyond the COVID-19 pandemic.Palliative care and social practice · 2026Review
- Three Years on From "Stay at Home": Perspectives of People With Intellectual Disabilities About the Ongoing Impact of the COVID-19 Pandemic.Journal of applied research in intellectual disabilities : JARID · 2025Article
- Living Through the COVID-19 Pandemic: The Experiences of People With Profound and Multiple Intellectual Disabilities Through a Family Carer Lens.Journal of applied research in intellectual disabilities : JARID · 2025Article
- Wellbeing of Family Carers of Adults With Intellectual Disabilities During the COVID-19 Pandemic in the UK: Longitudinal Study.Journal of intellectual disability research : JIDR · 2025Article
- What Would Have Helped People With Profound Intellectual and Multiple Disabilities in the UK During COVID-19?Journal of policy and practice in intellectual disabilities · 2024Article
- Article
- Experiences of UK and Irish family carers of people with profound and multiple intellectual disabilities during the COVID-19 pandemic.BMC public health · 2023Article
- Disabled people's experiences accessing healthcare services during the COVID-19 pandemic: a scoping review.BMC health services research · 2023Article
- Impact of COVID-19 Pandemic on Caregivers of People with an Intellectual Disability, in Comparison to Carers of Those with Other Disabilities and with Mental Health Issues: A Multicountry Study.International journal of environmental research and public health · 2023Article
- Correction: Impact of the COVID-19 pandemic on family carers of those with profound and multiple intellectual disabilities: perspectives from UK and Irish Non-Governmental Organisations.BMC public health · 2022Article
Corrections and comments
- Erratum issued
Authors and funding
8 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundFamily carers of people with profound and multiple intellectual disabilities (PMID) experienced a reduction in healthcare services due to the COVID-19 pandemic. Many subsequently turned to Non-Governmental Organisations who worked to support families. However, little research has sought to capture the experiences of family carers or identify effective interventions which might support them. To address these concerns we explored the views of Non-Governmental sector workers across the UK and Ireland who supported families people with PMID during the COVID-19 pandemic. We also sought to explore their views on the characteristics of online support programmes for family carers.
methodsThis study employed a qualitative design using focus groups with participants (n = 24) from five Non-Governmental Organisations across the UK and Ireland. A focus group guide included questions on challenges, supports, coping and resources which helped during lockdown restrictions. Focus groups were held online, were audio recorded and transcribed verbatim. The resulting transcripts were pseudonymised and subjected to thematic analysis.
findingsFour themes were identified (i) 'mental and emotional health', (ii) 'they who shout the loudest' (fighting for services), (iii) 'lack of trust in statutory services' and (iv) 'creating an online support programme'. Mental and emotional health emerged as the most prominent theme and included three subthemes named as 'isolation', 'fear of COVID-19' and 'the exhaustion of caring'.
conclusionsThe COVID-19 pandemic has increased the vulnerability of family carers who were already experiencing difficulties in accessing services and supports for their families. While Non-Governmental Organisations have been a crucial lifeline there is urgent need to design services, including online support programmes, in partnership with family carers which adequately address their needs.
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