key: cord-0744934-60sini6r
authors: Sheerin, Fintan; Allen, Andrew P.; Fallon, Marianne; McCallion, Philip; McCarron, Mary; Mulryan, Niamh; Chen, Yaohua
title: Staff mental health while providing care to people with intellectual disability during the COVID‐19 pandemic
date: 2022-02-08
journal: Br J Learn Disabil
DOI: 10.1111/bld.12458
sha: 844d31b9943fc5950cbe40ff7fea2e1f8165276e
doc_id: 744934
cord_uid: 60sini6r

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.

cluded the closure of day services, cessation of visits as well as impacting on family contact. This led to significant changes in the daily routines of people receiving service with a corresponding impact on staff patterns of working. It is unclear whether these changes led to mental health effects among HCWs in such settings, and, if so, how such effects compared to those in other health settings, as there is a dearth of literature in this regard.

Maintaining continued quality of care for people with intellectual disability, with whom bonds have been formed over years of caregiving, has presented particular challenges during the current pandemic (Courtenay & Perera, 2020; Grier et al., 2020) . While McCarron et al. (2020) has noted that many people with intellectual disability adhered to the restrictive measures, some may have difficulty in understanding or adhering to lockdown policies, and this may manifest through changes in their behaviours (Scheffers et al., 2021) . In this context, staff are likely to experience particular challenges to their own mental health, which in turn may have the potential to adversely influence care for the persons with an intellectual disability they are responsible for and, indeed, the availability of frontline staff, should mental health concerns result in absences (Embregts et al., 2021) .

Recently, two studies focused on healthcare workers working with people with intellectual disability (Lunsky et al., 2021) . Both were online surveys, with either new, bespoke questionnaires or previously validated scales. One was performed in Canada, and the other in the United Kingdom. They reported a high level of anxiety and distress among healthcare workers. Poorer mental health demonstrated similar patterns as for other HCWs, such as fear of transmitting the virus or stress from the need for constant adaptability. There were also some specific patterns, such as the need to manage increased rates of mental health issues and aggression of the people they support. Online surveys offer certain advantages but are often limited by the closed nature of their structured questions (Andrade, 2020) . A third study qualitatively examined the experiences of direct support staff, and documented similar concerns, but also pointed out examples of successful coping and the desire of staff for support from other professional and peer groups (Embregts et al., 2021) .

It is important to acknowledge the effect of COVID-19 and associated restrictions on the mental health and wellbeing of people with intellectual disabilities, themselves. Recent evidence has emerged from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) reporting increased stress and anxiety related to not being able to attend work/day service, lack of contact with families and friends, and loneliness (McCarron et al., 2020) ; findings corroborated by T. .

The aim of this study was to understand the impact of COVID-19 and related restrictions on the mental health of staff providing care to people with intellectual disabilities, during the pandemic in Ireland. Furthermore, it sought to explore staff experiences in engaging with mental health support, types of assistance needed and experienced as helpful in reducing any related mental health concerns and increasing preparedness to continue to provide ongoing care to people with intellectual disability and, finally, challenges and opportunities for supporting staff mental health into the future.

A qualitative descriptive design (Sandelowski, 2010) was employed to address the research aim through the conduct of individual interviews with participants.

Participants in the study were health and social care workers who were working with people with intellectual disability, in three Irish intellectual disability services, during the COVID-19 pandemic in Ireland. The definition of health and social care workers here was broad and included those who had daily or intermittent care interactions with people with intellectual disabilities (e.g., social care workers, care staff, registered intellectual disability nurses, health care assistants, care staff and clinical/unit managers, and other professionals with frequent direct care interactions such as multidisciplinary team members). A letter of invitation was sent to the senior management of the three convenience-sampled disability service providers, requesting access and distribution of study information to staff. All three services were located in the eastern part of Ireland. Two reminders were sent. Each service decided on their own best channels to communicate with their staff, which were usually announcements via intranet, or emails. Once potential participants approached the research team, they were provided with the participant information leaflet and consent form. Once participants returned a signed consent form, the research team arranged a time for the interview.

As this study employed a qualitative methodology, a power analysis was not appropriate. Choosing a suitable sample size in qualitative research remains an area of debate and uncertainty (Vasileiou et al., 2018) . Nonetheless, we recognised the importance of obtaining interviews from a range of healthcare staff working with people with intellectual disability. The data was interrogated to a sufficient degree to identify all key factors relating to health and social care workers' mental health, as raised by the participants.

Data were collected through the conduct of individual interviews (online and telephone due to COVID-19 restrictions), each a maximum of 60 min duration. A semi-structured interview protocol was developed, based on literature, with a focus on the dynamics of mental health and coping strategies, as well as broader factors that may support or pose challenges to mental health in this staff cohort.

The protocol probed: 

Remote interviews were recorded and transcribed, pseudonymized, and resulting data were analysed using thematic analysis (Braun & Clarke, 2006) . Initially, an iterative analysis process was used to generate codes and identify themes within the interview data by three members of the research team (authors YC, APA and FS). Given the breadth and novelty of the research questions, and the flexibility of the semi-structured interview format, a data-driven approach to analysis was used to suggest themes that may not have been explicitly addressed in the questions. As a next formal step these themes were discussed with another member of the research team and refined as necessary.

All ethical principles were adhered to and ethical approval was 

Thirteen interviews were conducted by YC and FS over the period November 2020 to January 2021 with a predominantly female sample of self-selecting individuals who provided healthcare to people with intellectual disability during the pandemic (Table 1) Four main themes emerged from the analysis of the interview narratives ( Figure 1 ). These related to the challenges of what had been a changing service environment, the effects of care during the pandemic on staff mental health, what participants found supportive in respect of their mental health and wellbeing and lessons for the future. These will now be presented.

The abrupt nature of the changes brought on by the pandemic- Participants noted that they continued to work in this way against a backdrop of needing to balance concerns and expectations.

Their first concern was for the health and wellbeing of the people whom they supported, and this was imbued with the sense that there were expectations to maintain routine for people, despite the dynamic challenges to that routine across the services. Thus, there was concern about the inability to meet expectations, …it's a really important thing that they have regular staff supporting them; staff that know them. (Francesca)

They were also concerned that any non-adherence to restrictions could potentially spread the disease among people with an intellectual disability, leading to fear and, when a staff member was infected, to guilt, …we were all very concerned that we would be bringing something into people's homes where we were doing the testing. (Zara)

The reopening of some service areas following the initial wave (in August 2020), were highlighted as being not only good for people with intellectual disabilities but also for staff mental health, …it still is better that the day services are open and all that for the guys and for, I will say this, for staff mental health. (Gabrielle)

These services did not, however, remain open as Ireland was hit by a second COVID-19 wave from August to November 2020, with a further, and particularly challenging, third wave leading to a prolonged lockdown from the beginning of January 2021.

The sudden and prolonged nature of the COVID-19 restrictions, and their effect on intellectual disability service provision, led to clearly SHEERIN ET AL. Others providing hands-on care found that the need to remain for long hours in a set service living unit, with physical distancing, also led to stress related to isolation, …a feeling of isolation to be honest there is so much less interaction not only with the people we support but also with my peers and co-workers. (Zara)

The fear of infection was also a cause of anxiety for some participants, who were concerned that they might have been exposed to . The rapid changes were particularly difficult due to this succession of waves. In our study, staff felt tired because of the difficulty in taking leave or the need to work extra hours. The situation of irregular working hours was also observed in another online survey among nurses (Alshekaili et al., 2020) . In a study of psychotherapists providing support during the pandemic, it has also been reported that 74% of such staff were tired (Aafjes- Van Doorn et al., 2020) , leading to the cycle of stress proposed above based on Pappa et al.'s (2020) work.

The high level of change and the corresponding increase in expectations were very challenging for staff in our study. A similar level of frustration and concern about not meeting expectations has been expressed by health care workerss working with older people with cancer (Krok-Schoen et al., 2020) .

In respect of staff mental health, participants often reported panic, anxiety and fear, similar to the reports of anxiety in other studies (Luceño-Moreno et al., 2020; Maraqa et al., 2020; Rossi et al., 2020) . Participants also reported insomnia, something seen in

Şahin et al.'s (2020) study.

A variety of supports were reported in our study. Usually, informal peer support, proactive managers' support, compensating activities and access to formal counselling supports (such as EAPs offered by employers) were noted. These protective factors were also identified in other studies (Maraqa et al., 2020; Nowicki et al., 2020) .

Positive impacts of this pandemic on practice were also identified in our study, reminiscent of a Polish online survey among nurses, which identified opportunities brought about by the pandemic for improving practice (Nowicki et al., 2020) . The participants in the current study also offered a variety of suggestions for the future.

However, the negative impact on service organisation and provision was significant, given the closure of so many settings. It is noteworthy that most of the studies pertaining to the mental health of health and social care workers were based in clinical hospital contexts, where high levels of COVID-19 were seen. These were mainly "front-line" staff (Dai et al., 2020; Luceño-Moreno et al., 2020; Pappa et al., 2020; Rossi et al., 2020; Sahin et al., 2020) or were proving care to patients with acute/chronic illness (Krok-Schoen et al., 2020) . The nature of the participants' roles in the current study was such that their experience of burden was likely different to that of health and social care workers in those other settings, although we did not compare these different cohorts of health and social care workers within this study.

The participants in this current study were required to be constantly creative, to deal with the restrictions, and the increased incidence of mental health issues or behavioural disorders, which was reported by another survey among staff with people with intellectual disability (Lunsky et al., 2021) , provided particular complexity to the caring environment. Unlike some other groups of adult care recipients, staff had particular concerns regarding the potential nonadherence of people with intellectual disability to restrictive measures; this contributed to the burden of care and stress experienced by participants. The staff here were not alone in this concern given reports of heightened neuropsychiatric symptoms of dementia (Simonetti et al., 2020) and reports for many groups of increased stress during COVID-19 (Cohen et al., 2020) . For staff working with people with intellectual disabilities the challenge may also have been that they view their work as increasing not restricting opportunities inherent in the philosophy of service (Health Care Executive, 2011).

As previously mentioned, coping strategies employed by participants included peer support from and with their colleagues, clinical supervision with managers and availing of formal mental health supports at the workplace. Clinical supervision has previously been reported as helping reduce burnout among staff working with people with intellectual disabilities and other disabilities (Gibson et al., 2009 We designed the study to allow an open and safe space for participants to discuss their experiences and perspectives. A methodology using predetermined questions in an online survey might have been quicker and have reached a wider sample, but it would also have lost the richness of qualitative data gathered in this study. As the participants were self-selecting, we might have missed responses from people who felt less comfortable talking about their mental health. We tried to overcome this limit by inviting participants to talk about staff mental health during COVID-19 in general terms, relating it to themselves when they felt comfortable to do so. Our study interviewed each participant at a single timepoint, and thus it did not track changes in stress levels, mental health and coping strategies over the duration of the pandemic. Some of the interviews were relatively short compared to others; however, using experienced interviewers and a semistructured interview schedule ensured there were follow-up questions, and prompts to add further points to help ensure that interviews did not end before respondents had made the points they wished.

While studies are beginning to provide qualitative insights into the impact of the COVID-19 pandemic on mental health of staff working with people with intellectual disability (Embregts et al., 2021) , this is the first on to do so in an Irish context.

Staff working with people with intellectual disability suffer from the same work overload, the sudden change, the constant adaptation, and the impact of the pandemic on their mental health, as other health and social care workers. Due to the specific conditions of their work, and the needs of those whom they are supporting, the impact of the pandemic appears to be significant with solutions needed to address the mental health of health and social care workers across personal, institutional and policy levels.

At an individual level, coping strategies should be encouraged such as availing of support from peers and managers, as well as availing of more structured mental health supports. At an institutional level, appropriate levels of timely information about COVID-19 and available supports should be provided to staff, with clear communication between staff directly providing care and management staff.

At a broader level, sufficient resources should be made available for PPE, staff mental health support, and staffing levels more generally, to avoid burnout associated with working excessive hours. At time of writing, lockdown restrictions are easing in Ireland, with very high uptake of COVID-19 vaccinations. Nonetheless, as one of our participants noted, the full mental health impact of this pandemic may not be fully known for some time to come.

In summary, the study highlighted the substantial challenges experienced during the COVID-19 pandemic, the impact of providing care on staff carer mental health, and the importance of supporting staff through developing a positive and supportive work environment that in turn better supported people with intellectual disability.

Open access funding provided by IReL.

The data that support the findings of this study are available from the corresponding author upon reasonable request.

https://orcid.org/0000-0002-4272-7756

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