Use of technology by older adults with an intellectual disability in Ireland to support health, well‐being and social inclusion during the COVID‐19 pandemic

Background: Before COVID‐19, people with intellectual disabilities were digitally excluded, facing difficulties accessing and using technology. The pandemic outbreak closed down many in‐person services and supports for this population. Methods: This study examined changes in technology use to support the healthcare and social connections of older adults with intellectual disability in Ireland (n = 682) during COVID‐19. Decision tree analyses explored factors associated with using technology for health and social connection;and to explore relationships between technology use and subjective outcomes of stress/anxiety and of positives during this period. Findings: Technology use for healthcare and social connection increased during COVID‐19, but not enough to make up for the loss of in‐person care/connection. Residence type was associated with increased use of technology for healthcare utilisation, with the highest rates among community group home residents and the lowest among those in independent/family settings. Increased technology use to speak with both family and friends was associated with prior digital skills and digital access. Increased technology use was significantly associated with both positive and negative experiences during the pandemic. Conclusions: The COVID‐19 pandemic offered an opportunity for increased digital connection for older adults with intellectual disabilities, but not all benefitted. Those with prior skills, available supports, and the greatest need to connect were more likely to enhance their use of technology. The complexity of the COVID‐19 period, including the general impact on mental health and well‐being, means that the role technology played in supporting quality of life and mitigating stress/anxiety needs further and longer‐term investigation. Accessible summary: Older adults with an intellectual disability in Ireland used technology more during the COVID‐19 pandemic—to use health services, and to speak to family and friends.Having digital skills before COVID‐19 helped people to increase their use of technology.Technology helped many people to stay connected, but did not fully make up for the loss of in‐person services and contact.Participants who used technology more during COVID‐19 were more likely to report some positive things during COVID‐19.Participants who used technology more were also more likely to feel stress or anxiety during COVID‐19.This shows that COVID‐19 was difficult for many people. But the study also shows that most people also found some good things during this time.

Supporting people with intellectual disability at end of life: Moral distress among staff caregivers during COVID-19

COVID-19 is likely to have compromised the management of end-of-life care. Disruptions include the inability to respect advanced care planning, offer support to the person dying, and the failure to celebrate the person's life within local customs. Where people work to deliver high-quality care, such disruption can lead to carers experiencing moral distress, which can have behavioural and physical consequences if unresolved. This chapter describes the leading theories of the causes, experiences, and prevention of moral distress for carers. We then utilise data from eight end-of-life interviews that supply evidence for carers experiencing moral conflict distress, moral constraint distress, moral uncertainty distress, retrospective moral distress, and moral residue to underpin three case stories about the disruptions to end-of-life care in the intellectual disability community. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Living and dying well with dementia

Many people with intellectual disability, particularly those with Down syndrome, are at increased risk for Alzheimer's disease. Recent findings suggest that while onset may be at an earlier age and more rapid in early dementia stages, there is often a long late stage where decisions about end-of-life care and dying well must be supported. For the individual and caregivers, later stages of dementia can be complicated by lack of understanding and preparedness by both generic palliative care and intellectual disability services. The COVID-19 pandemic has posed significant challenges for staff and family, and many have struggled with moral distress as they feel forced to act in a manner contrary to their own care beliefs. Three case studies with reflective questions about caring for people with Down syndrome and dementia are offered, one from the COVID-19 period. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Use of do-not-resuscitate orders

Use of patient/health proxy authorised do-not-resuscitate (DNR) or do-not-attempt-resuscitation (DNAR) orders is widespread in palliative, hospice and hospital-based chronic illness care. Such orders often reflect self-determination, avoidance of futile care and quality of dying principles. Reports during COVID-19 of physicians writing DNR/DNAR orders for people with intellectual disabilities at rates higher than the general population amplify past concerns about the value placed on their lives. Yet, absence of a DNR/DNAR or processes to permit one when someone cannot consent may result in painful and unnecessary prolongation of life. This chapter considers rationales for DNR/DNAR orders, use among people with intellectual disabilities, advance care planning, protocols when an individual is unable to consent and strategies for oversight of DNR/DNAR orders. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Accessible funerals and people with intellectual disability

This chapter briefly outlines Western funeral practices and then describes how funeral participation is important to successful grieving and meaning making of others' death. It examines research on funeral attendance and barriers, involving adults with intellectual disability. COVID-19 has restricted funeral participation for all, highlighting how people with disabilities have often been excluded from these rituals long before the pandemic. Experiences of both exclusion and participation are conveyed in several individual stories. The significance of emotional, social and spiritual supports linked to funerals (and the impact of being denied these) is discussed so that people with disabilities can be better supported to engage with and meaningfully participate in others' funerals, and have a say in their own funeral arrangements if they wish to. A list of resources is provided. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Moral distress in carers for people with an intellectual disability who died during the COVID-19 pandemic, a template analysis extending the Barlem and Ramos model of moral distress.

BACKGROUND: This article aims to understand moral distress in carers of people with an intellectual disability during the COVID-19 pandemic. METHOD: Nine staff carers of seven people with an intellectual disability, who had been participants of the IDS-TILDA study in Ireland, who died during the COVID-19 pandemic participated in in-depth, semi-structured telephone interviews. Template analysis was used to analyze the interviews. RESULTS: Obstructions in performing their duties left carers feeling powerless and experiencing moral conflict distress, moral constraint distress and moral uncertainty distress. Most managed to connect to the moral dimension in their work through peer support, understanding they fulfilled the wishes of the deceased, and/or thinking about how they or others did the best they could for the person they were caring for. CONCLUSIONS: This research demonstrates that while restrictions may have been effective in reducing the spread of COVID-19, they were potentially damaging to carer wellbeing.

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.

Carers supporting people with an intellectual disability often rely on others to manage the burden of care. This research aims to compare the differences between carer groups and understand the predictors of loneliness changes and burden for carers of people with an intellectual disability. Data from the international CLIC study were analysed. In total, 3930 carers responded from four groups; people who care for those with mental health difficulties (n = 491), dementia (n = 1888), physical disabilities (n = 1147), and Intellectual disabilities (n = 404). Cross tabulation and the chi-squared test were used to compare group compositions and binary logistic regression to model predictors within the intellectual disability group. A total of 65% of those caring for people with an intellectual disability experienced increased burden, and 35% of carers of people with an intellectual disability and another condition experienced more severe loneliness. Becoming severely lonely was predicted by feeling burdened by caring (AOR, 15.89) and worsening mental health (AOR, 2.13) Feeling burden was predicted by being aged between 35 and 44 (AOR, 4.24), poor mental health (AOR, 3.51), and feelings of severe loneliness prior to the pandemic (AOR, 2.45). These findings demonstrate that those who were already struggling with caring experienced the greatest difficulties during the COVID-19 lockdowns.

Staff mental health while providing care to people with intellectual disability during the COVID-19 pandemic.

Background: The COVID-19 pandemic has placed enormous strain on health systems around the world, undermining the mental health and wellbeing of healthcare workers. Supporting people with intellectual disabilities may be particularly challenging for workers, as some people with intellectual disabilities may have a limited understanding of the pandemic, and find it challenging to adhere to the restrictions imposed by public health guidelines such as social distancing, lockdowns and change in usual routine and activities. In addition, many people with intellectual disabilities have increased vulnerability to more negative effects of COVID-19, with significantly higher mortality rates. Although there is emerging research on the mental health of healthcare staff during this time, there has been little specific work on the mental health of staff working with people with intellectual disability, particularly a lack of qualitative research. Methods: The current study employed semi-structured interviews with 13 healthcare workers (12 women and 1 man) who were working with people with intellectual disability during the COVID-19 pandemic. The interview data were analysed using thematic content analysis. Findings: The participants spoke in depth about the challenges of the working environment, the impact of providing care during the pandemic on staff mental health, supporting staff mental health and wellbeing and learning for the future. Conclusions: Systematic efforts are required to protect the mental health of this staff cohort, as well as encouraging resilience and successful coping among staff themselves.

Use of do-not-resuscitate orders

Use of patient/health proxy authorised do-not-resuscitate (DNR) or do-not-attempt-resuscitation (DNAR) orders is widespread in palliative, hospice and hospital-based chronic illness care. Such orders often reflect self-determination, avoidance of futile care and quality of dying principles. Reports during COVID-19 of physicians writing DNR/DNAR orders for people with intellectual disabilities at rates higher than the general population amplify past concerns about the value placed on their lives. Yet, absence of a DNR/DNAR or processes to permit one when someone cannot consent may result in painful and unnecessary prolongation of life. This chapter considers rationales for DNR/DNAR orders, use among people with intellectual disabilities, advance care planning, protocols when an individual is unable to consent and strategies for oversight of DNR/DNAR orders. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Accessible funerals and people with intellectual disability

This chapter briefly outlines Western funeral practices and then describes how funeral participation is important to successful grieving and meaning making of others' death. It examines research on funeral attendance and barriers, involving adults with intellectual disability. COVID-19 has restricted funeral participation for all, highlighting how people with disabilities have often been excluded from these rituals long before the pandemic. Experiences of both exclusion and participation are conveyed in several individual stories. The significance of emotional, social and spiritual supports linked to funerals (and the impact of being denied these) is discussed so that people with disabilities can be better supported to engage with and meaningfully participate in others' funerals, and have a say in their own funeral arrangements if they wish to. A list of resources is provided. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Supporting people with intellectual disability at end of life: Moral distress among staff caregivers during COVID-19

COVID-19 is likely to have compromised the management of end-of-life care. Disruptions include the inability to respect advanced care planning, offer support to the person dying, and the failure to celebrate the person's life within local customs. Where people work to deliver high-quality care, such disruption can lead to carers experiencing moral distress, which can have behavioural and physical consequences if unresolved. This chapter describes the leading theories of the causes, experiences, and prevention of moral distress for carers. We then utilise data from eight end-of-life interviews that supply evidence for carers experiencing moral conflict distress, moral constraint distress, moral uncertainty distress, retrospective moral distress, and moral residue to underpin three case stories about the disruptions to end-of-life care in the intellectual disability community. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Living and dying well with dementia

Many people with intellectual disability, particularly those with Down syndrome, are at increased risk for Alzheimer's disease. Recent findings suggest that while onset may be at an earlier age and more rapid in early dementia stages, there is often a long late stage where decisions about end-of-life care and dying well must be supported. For the individual and caregivers, later stages of dementia can be complicated by lack of understanding and preparedness by both generic palliative care and intellectual disability services. The COVID-19 pandemic has posed significant challenges for staff and family, and many have struggled with moral distress as they feel forced to act in a manner contrary to their own care beliefs. Three case studies with reflective questions about caring for people with Down syndrome and dementia are offered, one from the COVID-19 period. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Use of technology by older adults with an intellectual disability in Ireland to support health, well‐being and social inclusion during the COVID‐19 pandemic

Background Methods Findings Conclusions Before COVID‐19, people with intellectual disabilities were digitally excluded, facing difficulties accessing and using technology. The pandemic outbreak closed down many in‐person services and supports for this population.This study examined changes in technology use to support the healthcare and social connections of older adults with intellectual disability in Ireland (n = 682) during COVID‐19. Decision tree analyses explored factors associated with using technology for health and social connection;and to explore relationships between technology use and subjective outcomes of stress/anxiety and of positives during this period.Technology use for healthcare and social connection increased during COVID‐19, but not enough to make up for the loss of in‐person care/connection. Residence type was associated with increased use of technology for healthcare utilisation, with the highest rates among community group home residents and the lowest among those in independent/family settings. Increased technology use to speak with both family and friends was associated with prior digital skills and digital access. Increased technology use was significantly associated with both positive and negative experiences during the pandemic.The COVID‐19 pandemic offered an opportunity for increased digital connection for older adults with intellectual disabilities, but not all benefitted. Those with prior skills, available supports, and the greatest need to connect were more likely to enhance their use of technology. The complexity of the COVID‐19 period, including the general impact on mental health and well‐being, means that the role technology played in supporting quality of life and mitigating stress/anxiety needs further and longer‐term investigation. [ FROM AUTHOR]

The challenges of mental health of staff working with people with intellectual disabilities during COVID-19--A systematic review.

BACKGROUND: The COVID-19 pandemic has posed a great risk to the mental health of health workers (HWs). There are likely to be particular concerns for staff working with adults with an intellectual disability, where infection control may be more challenging. METHOD: We conducted a systematic review of original research examining the mental health of HWs working with people with intellectual disability, published between March 2020 and July 2021. RESULTS: Five original research studies were included. A high proportion of HWs working with people with intellectual disability reported having had poor mental health including stress, anxiety, and depression. This manifested in similar patterns as for other HWs and also some specific patterns seen as the need to manage increased rates of mental health issues of the people they support. Sources of support and resilience were also identified. CONCLUSION: The support system should target risk factors, answer unmet needs, and build resilience. More research is also required on the ongoing and long-term effects.

Social work response needed to the challenge of COVID-19 for aging people with intellectual and developmental disabilties

This reprinted chapter originally appeared in Journal of Gerontological Social Work, 2020, 63[6-7], 595-597. (The following of the original article appeared in record 2021-00510-011.) The COVID-19 pandemic affects all of us, but consequences are more serious for those who are older or have chronic conditions and immune disorders. Places where numbers of people are living together, such as in nursing homes, have also proven to be particularly vulnerable. People with intellectual and developmental disabilities (I/DD) frequently present with the same risk factors but are largely forgotten in the care, response, and policy discussion. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

The impact of coronavirus disease 2019 (COVID-19) on older adults with an intellectual disability during the first wave of the pandemic in Ireland.

Background: People with intellectual disability have increased risk of exposure to and adverse outcomes from coronavirus disease 2019 (COVID-19).They also face challenges to mental health and well-being from COVID-19-related social restrictions and service closures. Methods: Data from a supplemental COVID-19 survey from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) (n=710) was used to assess outcomes from the first infection wave of COVID-19 among adults with intellectual disability aged 40+ years in Ireland. Data was gathered on testing, for symptoms and outcomes; procedures to manage COVID-19; and both stress/anxiety and positive experiences during the pandemic. Demographic and health-related data from the main IDS-TILDA dataset was included in analyses. Results: High rates were identified of health conditions associated with poorer COVID-19 outcomes, including overweight/obesity (66.6%, n=365), high cholesterol (38.6%, n=274) and cardiovascular disease (33.7%, n=239). Over half (53.5%, n=380) reported emotional, nervous or psychiatric disorders. Almost two-thirds (62.4%, n=443) were tested for COVID-19, with 10% (n=71) reporting symptoms and 2.5% (n=11) testing positive. There were no instances of COVID-19 related mortality. Common symptoms included fatigue, fever, and cough. Some participants (7.8%, n=55) moved from their usual home to isolate, most often (n=31) or relocate to a family home (n=11). Three-quarters (78.7%) of those who were symptomatic or who tested positive had plans to manage self-isolation and two-thirds were able to comply with guidelines. Over half (55%, n=383) reported some COVID-19 related stress/anxiety; and a similar proportion reported positive aspects during this period (58%, n=381). Conclusions: Our data suggests that people with intellectual disability avoided the worst impacts of COVID-19 during the first infection wave in Ireland. Nevertheless, participants' health profiles suggest that this population remains at high risk for adverse infection outcomes. Repeated measures are needed to track health and well-being outcomes across multiple infection waves.

The impact of coronavirus disease 2019 (COVID-19) on older adults with an intellectual disability during the first wave of the pandemic in Ireland [version 2;peer review: 2 approved]

Background: People with intellectual disability have increased risk of exposure to and adverse outcomes from coronavirus disease 2019 (COVID-19).They also face challenges to mental health and well-being from COVID-19-related social restrictions and service closures. Methods: Data from a supplemental COVID-19 survey from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) (n=710) was used to assess outcomes from the first infection wave of COVID-19 among adults with intellectual disability aged 40+ years in Ireland. Data was gathered on testing, for symptoms and outcomes;procedures to manage COVID-19;and both stress/anxiety and positive experiences during the pandemic. Demographic and health-related data from the main IDS-TILDA dataset was included in analyses. Results: High rates were identified of health conditions associated with poorer COVID-19 outcomes, including overweight/obesity (66.6%, n=365), high cholesterol (38.6%, n=274) and cardiovascular disease (33.7%, n=239). Over half (53.5%, n=380) reported emotional, nervous or psychiatric disorders. Almost two-thirds (62.4%, n=443) were tested for COVID-19, with 10% (n=71) reporting symptoms and 2.5% (n=11) testing positive. There were no instances of COVID-19 related mortality. Common symptoms included fatigue, fever, and cough. Some participants (7.8%, n=55) moved from their usual home, most often to isolate (n=31) or relocate to a family home (n=11). Three-quarters (78.7%) of those who were symptomatic or who tested positive had plans to manage self-isolation and two-thirds were able to comply with guidelines. Over half (55%, n=383) reported some COVID-19 related stress/anxiety;and a similar proportion reported positive aspects during this period (58%, n=381). Conclusions: Our data suggests that people with intellectual disability avoided the worst impacts of COVID-19 during the first infection wave in Ireland. Nevertheless, participants’ health profiles suggest that this population remains at high risk for adverse infection outcomes. Repeated measures are needed to track health and well-being outcomes across multiple infection waves.