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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

Linden, M., Forbes, T., Brown, M. , Marsh, L., Truesdale, M., McCann, E. ORCID: 0000-0003-3548-4204, Todd, S. & Hughes, N. (2022). 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, 22(1), 2095. doi: 10.1186/s12889-022-14560-4

Abstract

BACKGROUND: Family 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.

METHODS: This 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.

FINDINGS: Four 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'.

CONCLUSIONS: The 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.

Publication Type: Article
Additional Information: © The Author(s) 2022. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/
Publisher Keywords: Intellectual disability, Non-Governmental Organisations, COVID-19, Qualitative, Focus groups
Subjects: H Social Sciences > HN Social history and conditions. Social problems. Social reform
Q Science > QR Microbiology
R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Departments: School of Health & Psychological Sciences > Nursing
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