key: cord-0995330-xdcktq8q authors: Sweeney, Mary Rose; Boilson, Andrew; White, Ciara; Nevin, Mary; Casey, Briege; Boylan, Patrick; Staines, Anthony title: Experiences of residents, family members and staff in residential care settings for older people during COVID‐19: A mixed methods study date: 2022-03-20 journal: J Nurs Manag DOI: 10.1111/jonm.13574 sha: f388d6310427b0f64653e90f39bd62cacd3eb96a doc_id: 995330 cord_uid: xdcktq8q AIM: The aim of this study was to explore the COVID‐19 pandemic as it was experienced by people on the front line in residential care settings for older people in the Republic of Ireland (ROI). BACKGROUND: The COVID‐19 pandemic had a disproportionate effect in residential care settings for older people in Ireland. METHODS: A two‐phased mixed methods study was conducted, consisting of an online survey administered shortly after the first wave of the virus to staff, residents and family members and one‐to‐one interviews with family members shortly after wave 2 of the virus. RESULTS: Isolation, loss of connectedness as well as a reduction in the level/quality of care provision led to significant adverse impacts for both residents and their families. Staff reported high levels of stress, trauma and burnout. Family input to care was suspended, with adverse consequences. CONCLUSION: The pandemic had an extremely adverse impact on residents, family members and staff in care settings for older people. IMPLICATIONS FOR NURSING MANAGEMENT: Strategies to ensure that residents' physical, emotional and social needs and staffs' professional and personal needs are appropriately supported during future waves of the pandemic should now be implemented. A COVID-19 Nursing Home Expert Panel was also established by the Minister for Health in May 2020. The expert panel consulted with a wide range of stakeholders across the sector and published their report in August 2020 (Kelleher & Twomey, 2020) . The report highlighted multiple areas for improvement includingpublic health measures, infection prevention and control, outbreak management, admissions protocols, management, visiting, communication, palliative care, community support, staffing and workforce, education, GP roles, regulations and statutory care supports for older people. In July, 2020 the Health Information and Quality Authority (HIQA), an independent statutory authority published their report on nursing homes in Ireland (HIQA, 2020) detailing the impact of the COVID-19 pandemic on nursing homes and highlighted the need for reform in the care provision offered to older people in Ireland including improved clinical oversight, single occupancy rooms, supplementary or complementary models of care, better governance, staffing numbers and skill mix as well as enhanced infection control and prevention strategies and a focus on person-centred care with a human rights approach. A recent report (Phelan et al., 2022) which explored the experiences of Directors of Nursing of Residential Care settings during early stages of the pandemic showed the challenges for Directors of Nursing in balancing competing demands, values, strategies and regulatory frameworks in order to provide effective and safe care for vulnerable older people. The research also highlights the physical and psychological demands that were placed on nurses at this time and the lack of expert gerontological nursing expertise in the system. In this study we set out to explore the experiences of residents and family members who were at the frontline of COVID-19 in the residential care sector in Ireland when the pandemic occurred. The aim of this study was to explore the pandemic as it was experienced by key stakeholders (staff, residents and family members) at the front line of COVID1-19 in order to gain insights about preparedness, impact, supports and training needs and priorities which could be applied in the event of future waves of COVID-19 or new epidemics or pandemics. We used a mixed methods approach, in two phases. An anonymous survey was administered to staff who had been working in residential care settings during the pandemic as outlined below. We opted for an anonymous survey for staff so that they could freely provide answers without fear of being identified. We also sent an anonymous survey to residents and family members with an option to be contacted for a follow up one-to-one interview in case interesting or important issues requiring deeper exploration emerged. Both surveys were administered in the period from June-August 2020. As the study team wished to explore further some areas that had emerged in the survey, all family members who completed the survey were invited to take part in a one-to-one qualitative interview. Participants who agreed to take part were invited to provide an email address and phone number at the end of the survey, which was not linked to the data. All survey participants who provided contact details were subsequently contacted and 11 family members consented to be interviewed online by zoom, using a semi-structured topic guide developed specifically for the purpose of the study (see supporting information). Kallio et al.'s (2016) framework was utilized for the development of the semi-structured topic guide in this study and was informed by the literature. The topic guide included open-ended questions concerning the participants' views in relation to how the pandemic was experienced in residential care settings. Opinions relating to the impact on care and implications for future care delivery in this sector were also explored. The qualitative data was collected shortly after the second wave of the virus (November-December 2020). Research Ethics Approval was obtained from Dublin City University (reference number DCUREC/2020/158). Consent to take part in the online survey was obtained online. Consent to take part in the qualitative interviews was gathered electronically via signed and returned consent forms. All methods were performed in accordance with the relevant guidelines and regulations. The quantitative data was analysed descriptively (frequencies, means, standard deviations) using Excel Microsoft. The qualitative data was recorded on zoom and transcribed by a transcription company. The data were transferred to NVIVO and analysed by thematic analysis to generate overall themes. The demographic profile of staff participants are illustrated in Table 1 . The health care facilities who responded were as follows-Health Service Executive (HSE) facilities (n = 34, 49%) privately owned facilities (n = 30, 43%) and other types of facilities, that is, section 38 and voluntary (n = 5, 7%). Geographically most of these facilities were based in Dublin (n = 47, 67%) and 13 other counties in the Republic of Ireland were also represented. There are 576 facilities in Ireland (meaning we heard from 1 in 7.5 residential settings). Twenty-eight family members completed the online survey (15 daughters, 3 sons, 1 husband, 1 wife, 1 sister, 3 nieces, 2 granddaughters and 2 daughter-in-law). Two residents completed the survey. Five of the family members/residents were from a HSE facility, 20 of them were from a privately owned facility and the remainder said other facilities (such as supported housing and voluntary facilities). Fifty-six percent of the respondents said that COVID-19 had infected residents at their facility. Eleven one-to-one semi-structured interviews with family members were conducted remotely during December 2020. Eight females and two males consented to be interviewed regarding their experience of their family members care in residential facilities during the first wave of the pandemic. One participant was interviewed twice by two different researchers regarding her experience of care at both her mothers and her aunt's residential care facilities. There was a mix of HSE and private run residential care facilities reported across the 11 interviews in Dublin and in other parts of the country. This study generated a lot of data so for the purposes of presenting the quantitative and qualitative findings in a logical and succinct manner the main findings emerging from both the staff and residents/family members survey and the one-to-one interviews were integrated (triangulated) and are presented below. Quantitative findings from the staff survey are also presented in Being adequately prepared was regarded as essential by the major- Advanced age and poor physical and mental health was cited as increased risk factors for higher morbidity/mortality among residents. Family members believed that residents who did not have family members to advocate for them were at higher risk during the pandemic. Inadequate access to medical support and expertise were also cited as reasons contributing to the spread of the virus at the facility. A third of staff surveyed reported that more could have been done to reduce the number of deaths that occurred. vision also played a role in this regard. The weather was also a deterrent to connectedness. Staff and family members and families reported that the usual care of patients who did not contract COVID-19 was reduced or neglected during the pandemic. Figure 4 illustrates the main adverse impacts on residents as reported in the staff surveys. While there was an acknowledgement that physical decline was to be expected in residents due to their age and pre-existing morbidities, families described an acute decline in their loved one's physical health which included weight loss, reduced mobility, pressure sores, dehydration, and unkempt appearances, which some found shocking and distressing during the pandemic. One family member commented. 'I could not believe what I saw. My mum has lost a lot of weight in that month; she was grey, drawn, she had weeping eyes, and her lips were all desiccated, very, very, dry, dehydrated. I was really taken aback. I was thinking, God how did she go downhill this quickly'. Family members felt the impact of the pandemic on behalf of residents and themselves. This included fear, distress, anxiety, loneliness, helplessness, frustration and some participants experienced physical challenges such as being outside in all weathers trying to communicate via a window. A strong theme which emerged from the qualitative interviews was the disruption to their customary caregiving role. The majority of families did not perceive themselves to be visitors, but regarded themselves as continuing in their caregiver role in the residential environment. F I G U R E 4 The figure illustrates the main adverse impacts on residents as reported in the staff surveys Other staffing issues of concern included high turnovers, too few senior staff, staff who lacked the specific skills required, as well as too many agency staff. Family members highlighted the need for a more stable staffing structure which would ensure familiarity with the facility and the resident's individual needs and wishes. These deficits were of major concern to the majority of family members interviewed. The lack of medical and ancillary/psychosocial support interventions put additional pressure on staff workloads. However, the state provision of some additional staff during this period was welcomed and staff participants reported that the redeployment of student nurses as HCAs really helped to ease the burden. Many family participants praised the work of the facility staff who they perceived as committed and working to the best of their abilities to keep residents safe in a confusing and stressful context. The most frequently reported adverse impact on staff was the level of stress and burnout experienced, followed by concerns about virus transmission, trauma, fear about death of residents and self. The impacts on staff as captured in the staff survey are illustrated in Most staff perceived that the virus itself was responsible for mortality rates among residents but that their age had made them more vulnerable. Figure 6 below illustrates from the survey data where staff felt responsibility for the deaths at their residential centres lies. Some expressed anger about what they regarded was the slow governmental response in their sector. Many staff felt that government agencies did not prioritize the health and safety of residents and staff, particularly in wave one and this caused huge anger and distress. Staff placed trust in their own services in which they worked and the majority (89%) said they would trust their facility to provide safe care for residents in the event of future waves. Family members questioned the role of the relevant government agencies and the priority and pace of the response in this sector. This research provides novel insights grounded in lived experiences regarding levels of preparedness, factors contributing to the spread of the virus, impacts of COVID-19 and the associated effects on residents, their family members and staff. The study also highlights the governmental and health system response to the pandemic in this sector and informs priorities for future waves/future pandemics. Our findings are reflected in other studies, for example; ineffective/slow implementation of recognized infection control measures by government and residential service sectoral management (Daly, 2020) , lack of/slow implementation of service pandemic plans/ protocols (Tan & Seetharaman, 2020) excess staff/visitor/patient movement (Ouslander & Grabowski, 2020) , lack of/ineffective staff pandemic training/support (Kelleher and Twomey, 2020) and issues with staffing levels and skill mix (Davidson & Szanton, 2020) . These The adverse effects of the pandemic on the social functioning and mental health of a range of populations has been widely reported Brooks et al. (2020) . Older people, and particularly those in residential care were further socially isolated and unable to access alternative measures of psychological support due to cocooning guidelines and visitor/contact restrictions in residential care (Health Service Executive (HSE), 2020). The high levels and detrimental effects of isolation among nursing home residents in COVID-19 has been reported elsewhere (Cocuzzo et al., 2020; Ouslander & Grabowski, 2020) . Tan and Seetharaman (2020) identify the challenges for people with dementia and communication/behavioral issues in the context of the pandemic and report an increase in restraint use and falls due to imposed isolation. In our study, physical and mental health impairments as well as declining sight, hearing and voice projection seriously hampered successful communication in this socially distanced technological world. Although staff perceived that e-technology and online communication was adequate and effective, family participants countered this staff impression, reporting that this system was dependent on staff availability and the ability of residents/families to use the technology. Although it was not possible to interview residents for the study, and families throughout the pandemic experience is essential. Studies also point out that the pandemic has highlighted the need for advance planning with residents/families regarding end of life care (Selman et al., 2020) . In addition to mental health impacts, the deterioration of residents' physical health was a strong finding from our study with family participants expressing shock and distress at this rapid decline. Some of this deterioration may have been COVID-19 related but in many cases it resulted from the reduction or absence of usual care. Our study highlights the extent to which family members had hitherto provided direct care, and the importance of this to their loved ones. The contribution of families and partners to elder care in residential homes has been highlighted by Phillips et al. (2020) who describe family caregivers as the 'invisible workforce'. Davies and Nolan (2006) and O' Caoimh et al. (2020) claim that the nature of this family caregiving role within residential care home settings is poorly understood, undervalued and under researched. Many families do not perceive themselves to be visitors, but rather regard themselves as continuing in their caregiver roles in the residential environment. In our study, family participants voiced concern that they were not in a position to advocate for their relatives COVID-19 related care. Several family members likened the experience of the residents to being like 'prisoners' with no rights and no freedom. The loss of the caregiving role was a major source of distress to family members particularly when they observed the mental and phys- It is important to note that many family participants perceived the staff as committed and working to the best of their abilities to keep residents safe in a confusing, stressful and under-resourced context. Staff distress, emotional and physical exhaustion were observed by family members and reported in their interviews. As in the research by Kelleher and Twomey (2020) , these reports were accompanied by a high level of concern and care for the wellbeing of staff. Our findings in relation to staff wellbeing reflect those of Navarro Prados et al. (2021) , in that staff experienced information overload, physical and mental exhaustion, as well as fears about personal and patient contagion and death. Staff expressed anxiety at witnessing the impact of the virus on vulnerable people who were traumatized, alone and fearful and distressed that they were unable to meet the palliative care needs of patients during the pandemic. The most frequently reported adverse impact was the level of stress and burnout which compromised staff physical and mental wellbeing, a finding also reported by Maben and Bridges (2020) , Ouslander and Grabowski (2020) and Tan and Seetharaman (2020) . Despite the mammoth challenges they faced, staff kept going and appeared to put the residents' needs and safety considerations ahead of their own. This is echoed in a UK study which reported on the dedication of staff and their commitment to fulfill their duty of care which was described as 'Herculean … the extra work and hours that have been put in to support the NHS' (Bennett et al., 2020) . Kitson et al. (2021) Agreed national principles and minimum standards should be implemented for improving governance/management, infrastructure/ facilities and access to GP and other allied health professionals. This should include considerations around single room provision, shared spaces and outdoor spaces with coverage. Many of our findings echo the findings of the HIQA report (HIQA, 2020), the Expert panel report (Kelleher & Twomey, 2020) and the Phelan et al. (2022) study about the impact of COVID-19 in this sector and concur with the wide ranging actions now warranted. The authors would like to acknowledge the residents, family members and staff who participated in this mixed-methods study. There are no conflicts of interest to declare. This study was self-funded by the authors. Research Ethics Approval was obtained from Dublin City University (reference number DCUREC/2020/158). Consent to take part in the online survey was obtained online. Consent to take part in the qualitative interviews was gathered electronically via signed and returned consent forms. All methods were performed in accordance with the relevant guidelines and regulations. MRS had the original idea for the study; she designed the study, applied for and obtained ethical approval, designed the materials, administered the survey, and co-analysed and interpreted the data and co-wrote and approved the final manuscript. AB co-analysed the quantitative data. CW conducted, analysed and wrote up the qualitative interviews. MV conducted, analysed and wrote up the qualitative interviews. 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