In total, 118 surveys were completed and 31 persons (6 residents, 10 staff, 15 family members) responded to open-ended questions. This section commences with an outline of the demographic data followed by the three key areas surveyed, namely experience of the nursing home resident, the approach of staff, and the nursing home environment. The findings from the open-ended comments are also reported as part of this section.

Demographics

Figure 1 identifies the representation of the 118 participants and Fig. 2 gender representation. Within gender, of the residents 15 (60%) were male and 10 (40%) were females, of the family members 8 (19%) were male and 34 (81%) females, and of the staff members 13 (25.5%) were male and 38 (74.5%) females. Participant age profile ranged from 20 to 92 years with their length of stay in/or connected to a nursing home ranging from 1 to 28 years. For the resident participant group 20% (n = 5) resided in the nursing home for one year, 36% (n = 9) two years, and 44% (n = 11) three years. For the family participant group, 45% (n = 19) had a family member in the nursing home for one year, 31% (n = 12) two years, 5% (n = 2) three years, 17% (n = 7) four years, and 2% (n = 1%) ten years. Residents age profile ranged from 79 to 92 years and family age profile ranged from 30 to 91 years identifying both partners and children were represented. Overall, 83.3% (n = 98) participants considered that the information provided about COVID-19 was clear and understandable while 16.1% (n = 19) found the information provided was not clear and understandable. It is notable however that all residents (100%, n = 25) indicated that the information provided about COVID-19 was clear and understandable, followed by 94.1% (n = 48) staff, and 61.9% (n = 26) family participants. 82.2% (n = 97) participants indicated that a COVID-19 case had occurred in the nursing home while 17.8% (n = 21) had no COVID-19 case occur. Where a COVID-19 case had occurred, participants identified care staff 30.2% (n = 26) as the group most impacted, followed by residents 23.2% (n = 20), nurses 19.8% (n = 17), cleaners 17.4% (n = 15) and doctors and relatives 4.7% (n = 4) each.

Fig. 1Fig. 2Experience of residents

The experience of residents was conveyed positively by each of the participant groups: residents, family, and staff (Table 1). The score ranged from 50.9% (n = 60) feel safe, to 73.8% (n = 87) personal belongings are cared for. All areas scored above 50%, with five questions scoring in the 50% range, six in the 60% range, and two in the 70% range. However, within the high scoring elements the aspects of becoming bored 74 (62.7%), feeling lonely 83 (70.3%) and often feeling worried, anxious, or fearful 75 (63.6%) were scored high. The section Cronbach’s alpha reliability score was strong (0.806).

Table 1 Experience of residentsApproach by Staff

The approach of staff was reported positively by the three participant groups, with all areas scoring above 69% (Table 2). Responses ranged from 69.5% (treated fairly by staff) to 83% (treated kindly). All areas scored above 60%, with one question scoring in the 60% range, nine in the 70% range, and three in the 80% range. The section Cronbach’s alpha reliability score was strong (0.973).

Table 2 Approach by staffThe nursing home environment

The quantitative data indicates that the nursing home environment was generally viewed positively by participants, with all but one question achieving above 50% (Table 3). The range went from 41.5% (residents get up and go to bed when they want) to 89.1% (nursing home is comfortable and well kept). While one question scored in the 40% range, the remaining questions scored above the 50% range with n = 2 in the 50% range, n = 12 in the 60%, n = 3 in the 70% range and n = 2 in the 80% range. The lowest score for agreement was for ‘residents to get up and go to bed when they want’ (41.5%, n = 49) with 44.2% (n = 52) in disagreement thereby indicating a low level of choice and control. The section Cronbach’s alpha reliability score was strong (0.975).

Table 3 The nursing home environmentOpen-ended text results

Two specific open-ended questions were asked: ‘If there was a positive case of COVID-19 in your nursing home how did you become aware of this?’ and ‘How did staff support residents to maintain relationships with you as a family and community?’ and these are reported below. In addition, there was an opportunity at the end of the third section to make additional comments and an option for the participant to add anything else about their experience during the COVID-19 pandemic. This additional data was analysed utilising Colarafi and Evans [21] content analysis framework where all qualitative data was collated and read and reread, following which codes were assigned, revised and redefined where appropriate. All codes of similar meaning were grouped together to visualise and represent the data and three themes emerged namely, ‘care’, ‘human rights’ and ‘experiences’.

If there was a positive case of COVID-19 in your nursing home, how did you become aware of this?

Information regarding positive COVID-19 cases were communicated to staff, residents, and family members in a range of ways. Communication primarily flowed from management teams, directors of nursing, nursing homeowners, or from staff assigned the role of communications. In some cases, staff learned of a positive COVID-19 case from other staff/peers, at staff handover or when coming on duty; ‘I was met at the door and informed (Staff 1)’ which raised a concern for staff who reported ‘you could not always tell what you were walking into (Staff 2)’.

Several methods were used to support communication, with email being the most frequent. Communication also occurred via text messages, phone calls and encrypted work applications on smartphones. While participants reported communication approaches as effective, they were already established, and there were incidents of residents and family members receiving news about positive COVID-19 cases from other sources; ‘a relative had to tell me (Resident 1)’ or ‘I hear it when I was down at the local shop (Family member 1)’. There was a sense among some participants that the presence of COVID-19 was not effectively communicated, ‘we knew COVID-19 was present but we did not know to what was the extent of the outbreak (Resident 2)’, and that the true reality and seriousness of the situation was masked, ‘I was not told my friend had COVID-19 (fellow resident), I was told he was fine (Resident 3)’.

How did staff support residents to maintain relationships with you as a family and community?

A variety of means and measures were identified to assist residents in preserving relationships with family and community. Window visits were frequently employed to facilitate families and friends, whilst also maintaining infection prevention measures and were seen as ‘safe visiting (Family member 2)’. Visits in outdoor shelters were facilitated as social distancing and outdoor ventilation offered a safer environment for residents. In some cases, families were permitted visits in-person and indoors, while others were only granted in-person visits for compassionate reasons due to residents being unwell or at the end-of-life. Conventional phone calls and/or video calls were a popular means of communication. Staff reported offering forms of technology such as tablets to enable face-to-face communication via WhatsApp and Zoom. Written communications were also supported via postcards, letter writing and emails and where necessary staff aided letter writing and letter reading. One staff participant described using their own personal phone with a resident to support contact with family members. Other endeavours reported to support residents were communicating news updates, reading newspaper, art activities and engaging in essential human interactions such as spending time and sitting to talk and chat with residents.

Resource issues were however evident with family members noting, ‘there is no internet in the nursing home or it’s a poor internet connection (Family member 3)’, ‘they don’t have phones or tablets and the nursing home only has a few to go around (Family member 4)’, and in situations where a resident may need assistance to use a phone/tablet, ‘staff did not have much time to help with phone calls they were so busy they were not able to assist at all times (Family member 5)’. In addition, the demand on staff resulted in family members reporting, ‘being asked to stop ringing the nursing home due to the busyness of the situation (Family member 6)’, or ‘we had no option to visit, and this was not the case for other nursing homes or the advice at the time (Family member 1)’. In addition, a family participant reported ‘some residents had more support and visitations than my (family member) and I don’t know why, was there a reason for this or was it that they got favours I don’t know (Family member 8)’.

Care

Family members reported their opinions on the level of care their family member received during the peak of the pandemic and associated restrictions. Experiences and perceptions of the care received by residents were expressed along a continuum from excellent to insufficient and neglectful. Family members described their experience as follows, ‘we were in turmoil because we were unable to visit and care for dad’ (Family member 3), but there was also an appreciation that residents ‘are in a secure place that they are familiar with staff who care and are doing their best in an unprecedented time’ (Family member 6). Family members also recognised staffs’ efforts, ‘they did far more than can be expected of them and tried so much to help with everything’ (Family member 4). Despite families acknowledging the efforts of staff, there was an agreement that there were ‘so little staff to meet resident’s needs’ (Family member 5), particularly as ‘staff were sick with COVID-19 themselves and there was no staff to replace them’ (Family member 3). Other family members felt care fell short as the holistic needs of residents were not fully addressed as there was a ‘a lack of compassion and understanding as people in the nursing home were lonely and this need was not a priority’ (Family member 9) and that ‘people died during COVID-19 alone, confused and without family support and this was so upsetting and cruel’ (Family member 10). A family member reported that, ‘if COVID-19 did not cause suffering for people the loneliness and heartbreak experienced during COVID-19 has changed people’s life forever’ (Family member 11). There was also a suggestion that staff with suspected COVID-19 infection or contact status continued to work due to staff shortages and a lack of alternative support or options, thereby placing residents at further risk of infection, ‘while we can never know and there was such a shortage of staff you would wonder did staff continue to work because they were needed when if they were working anywhere else they would have been at home as they may have had it’ (family member 12).

Human rights

In the modern healthcare era, there is a greater emphasis on the role and place of human rights and while healthcare may be shaped by human rights, this may not always be evident. Nursing home residents, family members and staff all enjoy rights which were impacted on by various restrictions. Human rights of relevance to this study include the right to life, the right to liberty and security, the right to private and family life, the right to be free from inhuman or degrading treatment, and one’s rights to equality and prohibition of discrimination. Three resident participants reported levels of confusion and distress as ‘it was hard to know who was caring for you with the masks and gowns and it was hard to know what they were saying, all the days were the same and with no contact with the outside world it was confusing well I was getting confused’ (Resident 4).

While participants comments may reflect a sense that self-determination, decision-making, and safety were impacted upon, there were also comments that the nursing home was homely ‘it is so welcoming and comfortable in there it’s a real home away from home’ (Resident 5). Decision-making and self-determination were perceived as being influenced by the view that, ‘nursing home managers hold all the power, and they were so focused on COVID-19 and it not getting in that they blocked everything and seemed as if they want just to lock the world out till it was over’ (Family member 7). There was a sense of hopelessness and powerlessness which stemmed from the feeling of being abandoned (staff and management) or having abandoned their loved ones (families). Here a staff member reported that we have always been forgotten, ‘we never had PPE and there was never any focus on it for nursing homes, but now with COVID-19 nursing homes are in the news everyone is watching, so suddenly we are getting the resources like PPE but why now is it only because of COVID-19 and what will happen after’ (Staff 3). From a family perspective not being able to visit their family member especially those with diminished cognitive function or dementia made them question whether their family member felt abandoned, ‘they won’t understand this and what is happening, and I can’t go in and be with them, it’s sad for them to be alone and it’s hard for me thinking that I abandoned them’ (Family member 8).

Experiences

Nursing home staff and families conveyed their opinions on the working situation and their experience during COVID-19. While it was accepted that staff did their best, the toil of COVID-19 was seen as not being without personal and professional cost, ‘staff are so tired and exhausted, they are likely burnt-out but just keep going’ (Family member 9). A staff member highlighted that ‘we worked tirelessly to care and support our residents, there were times we worked around the clock and stayed here to keep the residents safe, we made a lot of sacrifices and so did our families and that’s not recognised, my kids had to go without seeing me for a long period of time’ (Staff 4). This accumulates in staff considering leaving the nursing home and the caring profession altogether, ‘I have handed in my notice, I will be sad leaving but the whole thing was too much for me I struggled with the restrictions especially for those coming to the end of their life, it played on me and to be honest it was making me unwell so I need to go’ (Staff 5). Family members were aware of staffing issues and reported that ‘there was never enough staff….and they are so busy with little support’ (Family member 10).

While participants acknowledged multidisciplinary healthcare team support, it is evident that staff were predominantly nurses or healthcare assistants and that ‘the nurses and carers they are the ones that had to take the brunt of everything and deal with all the stress and pressure from residents, families and the health service’ (Family member 9). The need for in-person care provision was also considered essential, ‘the GP (General Practitioner) should have been more supportive they could have done onsite visits instead of over the phone consultations or virtual visits, they were accessible but were not accessible at the same time and its slow to come back’ (Staff 6).

In some cases, staff perceived that the regulatory authorities were more concerned with public perception, ‘the regulatory bodies were just responding at times and not to the fore leading and supporting us, they were just regurgitating existing information and to me promoting their presence to ensure they were being heard, we had so many new specialists that I had never heard of before and seemed to lack compassion for people on the ground as people were suffering and they seemed to be focusing on retrospective analysis and surveys information reacting to the crisis but what will we all learn’ (Staff 6). This response highlights that regulatory bodies, professors, researchers, health authorities and professionals were at the forefront of media reporting around nursing homes, providing advice and guidance. However, nursing was less evident, and a staff member deemed the cohort in the media as ‘out of touch with the daily reality of nursing homes and the lives of people living and working there’ (Staff 7). Nonetheless, there was a sense that the ‘media circus’ would help shine a light on issues affecting nursing homes including personal protective equipment availability, but also emphasise the ‘reality of the sadness, fear, anxiety and individual tragedies that occurred and force us to question if they were warranted and necessary’ (Staff 8). This culminated in staff wavering between a feeling that support would finally be on its way and the feeling that they would be forgotten again as support would dispel once they were out of the media.