Experiences of UK and Irish family carers of people with profound and multiple intellectual disabilities during the COVID-19 pandemic
Abstract Background People with profound and multiple intellectual disabilities (PMID) have high and intensive support needs that ordinarily place significant strain on family carers. This was further heightened by the removal of many external supports during the COVID-19 pandemic. We sought to expl...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-12-01
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| Series: | BMC Public Health |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12889-023-17432-7 |
| _version_ | 1797388056204935168 |
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| author | Mark Linden R Leonard T Forbes M Brown L Marsh S Todd N Hughes M Truesdale |
| author_facet | Mark Linden R Leonard T Forbes M Brown L Marsh S Todd N Hughes M Truesdale |
| author_sort | Mark Linden |
| collection | DOAJ |
| description | Abstract Background People with profound and multiple intellectual disabilities (PMID) have high and intensive support needs that ordinarily place significant strain on family carers. This was further heightened by the removal of many external supports during the COVID-19 pandemic. We sought to explore the experiences of family carers of people with PMID during the COVID-19 pandemic and understand what the longer-term impact might be on their lives. Methods Focus group interviews (n = 32) were conducted with family carers (n = 126) from the four countries of the UK and the Republic of Ireland. Participants were asked questions relating to their experiences of the COVID-19 pandemic, coping strategies, and challenges faced. All focus groups were conducted using the online platform, Zoom. These were audio recorded, transcribed verbatim and analysed employing inductive thematic analysis. Findings Three main themes were generated from the data including (1.0) COVID-19 as a double-edged sword (2.0), The struggle for support (3.0), Constant nature of caring. These included 11 subthemes. (1.1) ‘COVID-19 as a catalyst for change’, (1.2) ‘Challenges during COVID-19: dealing with change’, (1.3) ‘Challenges during COVID-19: fear of COVID-19’, (1.4); ‘The online environment: the new normal’ (2.1) ‘Invisibility of male carers’, (2.2) ‘Carers supporting carers’, (2.3) ‘The only service you get is lip service: non-existent services’, (2.4); ‘Knowing your rights’ (3.1) ‘Emotional response to the caring role: Feeling devalued’, (3.2) ‘Emotional response to the caring role: Desperation of caring’, (3.3) ‘Multiple demands of the caring role.’ Conclusions The COVID-19 pandemic presented immense challenges to family carers of people with PMID but also provided some opportunities. Families had already struggled to receive many of the supports and services to which they were entitled to only to have these removed at the onset of the pandemic. The experiences of male carers have been largely absent from the literature with this research showing they want to be included in decision making and require tailored support services. Service providers should see the end of the COVID-19 pandemic as providing opportunity to re-examine current provision and design services with family carers. As the direct threat from COVID-19 diminishes and the experiences of those who lived through this period come to the fore, there is a need to re-examine current models and provision of support to family carers to better meet their needs. |
| first_indexed | 2024-03-08T22:34:13Z |
| format | Article |
| id | doaj.art-47a9cde3e66442e28857aa1afedaf997 |
| institution | Directory Open Access Journal |
| issn | 1471-2458 |
| language | English |
| last_indexed | 2024-03-08T22:34:13Z |
| publishDate | 2023-12-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Public Health |
| spelling | doaj.art-47a9cde3e66442e28857aa1afedaf9972023-12-17T12:32:12ZengBMCBMC Public Health1471-24582023-12-0123111310.1186/s12889-023-17432-7Experiences of UK and Irish family carers of people with profound and multiple intellectual disabilities during the COVID-19 pandemicMark Linden0R Leonard1T Forbes2M Brown3L Marsh4S Todd5N Hughes6M Truesdale7School of Nursing and Midwifery, The Queen’s University of BelfastSchool of Nursing and Midwifery, The Queen’s University of BelfastSchool of Nursing and Midwifery, The Queen’s University of BelfastSchool of Nursing and Midwifery, The Queen’s University of BelfastSchool of Nursing and Midwifery, The Queen’s University of BelfastSchool of Healthcare Sciences, University of South WalesESRC Centre for Care, Department of Sociological Studies, University of SheffieldSchool of Health and Wellbeing, University of GlasgowAbstract Background People with profound and multiple intellectual disabilities (PMID) have high and intensive support needs that ordinarily place significant strain on family carers. This was further heightened by the removal of many external supports during the COVID-19 pandemic. We sought to explore the experiences of family carers of people with PMID during the COVID-19 pandemic and understand what the longer-term impact might be on their lives. Methods Focus group interviews (n = 32) were conducted with family carers (n = 126) from the four countries of the UK and the Republic of Ireland. Participants were asked questions relating to their experiences of the COVID-19 pandemic, coping strategies, and challenges faced. All focus groups were conducted using the online platform, Zoom. These were audio recorded, transcribed verbatim and analysed employing inductive thematic analysis. Findings Three main themes were generated from the data including (1.0) COVID-19 as a double-edged sword (2.0), The struggle for support (3.0), Constant nature of caring. These included 11 subthemes. (1.1) ‘COVID-19 as a catalyst for change’, (1.2) ‘Challenges during COVID-19: dealing with change’, (1.3) ‘Challenges during COVID-19: fear of COVID-19’, (1.4); ‘The online environment: the new normal’ (2.1) ‘Invisibility of male carers’, (2.2) ‘Carers supporting carers’, (2.3) ‘The only service you get is lip service: non-existent services’, (2.4); ‘Knowing your rights’ (3.1) ‘Emotional response to the caring role: Feeling devalued’, (3.2) ‘Emotional response to the caring role: Desperation of caring’, (3.3) ‘Multiple demands of the caring role.’ Conclusions The COVID-19 pandemic presented immense challenges to family carers of people with PMID but also provided some opportunities. Families had already struggled to receive many of the supports and services to which they were entitled to only to have these removed at the onset of the pandemic. The experiences of male carers have been largely absent from the literature with this research showing they want to be included in decision making and require tailored support services. Service providers should see the end of the COVID-19 pandemic as providing opportunity to re-examine current provision and design services with family carers. As the direct threat from COVID-19 diminishes and the experiences of those who lived through this period come to the fore, there is a need to re-examine current models and provision of support to family carers to better meet their needs.https://doi.org/10.1186/s12889-023-17432-7Intellectual disabilityFamily carersCOVID-19QualitativeFocus groups |
| spellingShingle | Mark Linden R Leonard T Forbes M Brown L Marsh S Todd N Hughes M Truesdale Experiences of UK and Irish family carers of people with profound and multiple intellectual disabilities during the COVID-19 pandemic BMC Public Health Intellectual disability Family carers COVID-19 Qualitative Focus groups |
| title | Experiences of UK and Irish family carers of people with profound and multiple intellectual disabilities during the COVID-19 pandemic |
| title_full | Experiences of UK and Irish family carers of people with profound and multiple intellectual disabilities during the COVID-19 pandemic |
| title_fullStr | Experiences of UK and Irish family carers of people with profound and multiple intellectual disabilities during the COVID-19 pandemic |
| title_full_unstemmed | Experiences of UK and Irish family carers of people with profound and multiple intellectual disabilities during the COVID-19 pandemic |
| title_short | Experiences of UK and Irish family carers of people with profound and multiple intellectual disabilities during the COVID-19 pandemic |
| title_sort | experiences of uk and irish family carers of people with profound and multiple intellectual disabilities during the covid 19 pandemic |
| topic | Intellectual disability Family carers COVID-19 Qualitative Focus groups |
| url | https://doi.org/10.1186/s12889-023-17432-7 |
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