Impact of <scp>COVID</scp>‐19 on the burden of care of families of people with intellectual and developmental disabilities

Navas, Patricia; Verdugo, M.; Martínez, Sergio; Amor, Antonio M.; Crespo, Manuela; Deliu, Madalin M.

doi:10.1111/jar.12969

Cited by 25 publications

(24 citation statements)

References 42 publications

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“…The majority of these studies focused on parents of children, but some have included or focused exclusively on family caregivers of adults. For example, in a study of 323 family caregivers in Spain, 80% were family members of adults with ID (Navas, Verdugo, et al, 2021 ). Among those who stopped receiving or experienced significant changes in social service provision (74.3%), almost half experienced a decline in previously acquired skills and problem behaviors during the first lockdown, while 6 in 10 showed heightened anxiety and nervousness.…”

Section: Methodsmentioning

confidence: 99%

The mental health and well‐being of adults with intellectual disability during theCOVID‐19 pandemic: A narrative review

Lunsky

Jahoda

Navas

et al. 2022

Policy Practice Intel Disabi

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Prior to the start of the pandemic, adults with intellectual disability (ID) were more likely to experience mental health difficulties and face barriers obtaining mental health care. COVID‐related public health restrictions, combined with heightened challenges to obtain timely mental health care, have served to worsen this situation internationally, with a combination of new onset conditions and worsening mental health for those already struggling. In this narrative review, we summarize literature on the mental health of adults with ID during the COVID‐19 pandemic to describe what is known based on clinician perceptions, existing administrative health data, family and staff perceptions, and self‐report. In addition to noting similarities and differences in findings based on the source of information, we also explored how experiences differed depending on where and when the research was conducted. Based primarily on research conducted during the first six months of the pandemic, there is a consistent finding across sources of increased anxiety, stress, and isolation. This review also explored the delivery of virtual mental health care and the impact of pandemic‐based mental health interventions. There have been very few research studies evaluating clinical care during this time but clinicians have managed to provide supports virtually, which has been evaluated positively by some individuals. This narrative review concludes by identifying gaps in the literature and suggests key directions for future mental health research, policy, and practice efforts. Any mental health efforts now and during pandemic recovery need to have an understanding of how the mental health needs and services for adults with ID have evolved over the course of the pandemic. Further research is needed on the impact of both clinical interventions and other nonclinical efforts on the mental health of people with ID.

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Section: Methodsmentioning

confidence: 99%

The mental health and well‐being of adults with intellectual disability during theCOVID‐19 pandemic: A narrative review

Lunsky

Jahoda

Navas

et al. 2022

Policy Practice Intel Disabi

Self Cite

View full text Add to dashboard Cite

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“…Family carers were left to cope without the support of day centres, family, friends and with the removal of social care packages. Many faced a disproportionate burden of care leading to increased stress and depression [ 1 , 13 ]. Many families had some support but most of them didn’t have the support they really needed and they were already at exhaustion stage prior to the pandemic coming in.…”

Section: Resultsmentioning

confidence: 99%

“…The strongest predictor of carer well-being were changes in mood of the person they cared for [ 1 ]. Similarly, a survey of 323 Spanish carers of people with ID also documented increased levels of stress which was attributed to an increase in their caring role due to service closures [ 13 ]. A qualitative study conducted with eight English parents of people with ID during the first lockdown period of 2020 identified themes of powerlessness, coping (establishing a routine, sacrifice as the norm), support (lack of services, appreciation of technology) and reduced well-being (vulnerability of their family member, relentless demands of caring) [ 20 ].…”

Section: Introductionmentioning

confidence: 99%

“…They are at greater risk of experiencing multiple and complex physical health needs, including epilepsy, coordination disorders, respiratory infections, pneumonia, dysphagia, gastroesophageal reflux disorder, helicobacter pylori, constipation and urinary incontinence [9][10][11] These conditions require on-going management by family carers and services to prevent deterioration and minimise the potential of complications such as chest infection and pneumonia [12]. Services required by people with PMID and intellectual disabilities (ID) prior to the pandemic included physiotherapy, speech and language therapy, personal assistants, day activity centres, respite care, special education, mental health and social care [13][14][15][16], which were essential for their continued health and well-being. With the removal of in-person treatment due to pandemic restrictions, UK and Dutch studies showed increases in referrals to psychiatric services for deterioration in the mental health of people with ID [14,17].…”

Section: Introductionmentioning

confidence: 99%

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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

Linden¹,

Forbes²,

Brown³

et al. 2022

BMC Public Health

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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.

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“…The relationships between lockdowns due to the COVID-19 pandemic, psychosocial and cognitive variables, and the well-being of people with Down syndrome (DS) have been recently investigated(Villani et al , 2020. Moreover, a health survey of adults has reported the care burdens of families with intellectually and developmentally disabled family members (Navas et al , 2022). However, no studies have investigated the impact of COVID-19 on people with DS in Japan.…”

Section: Introductionmentioning

confidence: 99%

Impact of COVID-19 on people with Down syndrome in Japan based on regional differences frequency of emergency declarations

Kojima

2022

AMHID

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Purpose The purpose of this study was to clarify the impact of adults with Down syndrome (DS) on COVID-19 and the status of efforts for new normal in Japan through a Web survey. Design/methodology/approach Parents’ associations’ representatives sent requests to members aged 18 years or older inviting them to participate in an Internet survey. A total of 141 people cooperated, and 126 people were included in the analysis. Findings As a result of examining the number of times the state of emergency was declared and its impact on COVID-19, the degree of anxiety felt when hearing information about new coronavirus infections on television or the internet was significantly higher in subjects for whom the state of emergency was declared four times than in subjects for whom the state of emergency was declared two and three times in the region. This was significantly higher than that of the subjects in the areas where the state of emergency had been declared four times and significantly lower than that of the subjects in the areas where the state of emergency had been declared one time for “smiling”. The results suggest that the effects on physical and mental health, although limited, are influenced by the number of times the state of emergency was declared. From the analysis of the free text, it was inferred that some, but not all, of the subjects with DS, had their physical and mental state affected by COVID-19 to the extent that they required medical care. Originality/value This study clarified the psychosomatic effects of COVID-19 in people with DS in adulthood, which has not yet been fully clarified in the world. To the best of the authors’ knowledge, this is the first study in Japan to clarify the physical and mental effects of COVID-19 on people with DS and the status of new normal initiatives.

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Impact of COVID‐19 on the burden of care of families of people with intellectual and developmental disabilities

Cited by 25 publications

References 42 publications

The mental health and well‐being of adults with intellectual disability during theCOVID‐19 pandemic: A narrative review

The mental health and well‐being of adults with intellectual disability during theCOVID‐19 pandemic: A narrative review

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

Impact of COVID-19 on people with Down syndrome in Japan based on regional differences frequency of emergency declarations

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