key: cord-0758386-i7s0pgvk
authors: Giebel, Clarissa; de Boer, Bram; Gabbay, Mark; Marlow, Paul; Stoop, Annerieke; Gerritsen, Debby; Verbeek, Hilde
title: “Because if I don’t hold his hand then I might as well not be there”: Experiences of Dutch and UK care home visiting during the COVID-19 pandemic
date: 2021-09-17
journal: J Am Med Dir Assoc
DOI: 10.1016/j.jamda.2021.09.006
sha: 85b9f657bb79865ae39c508b0fd7e69526ba5520
doc_id: 758386
cord_uid: i7s0pgvk

Objectives To explore and compare the experiences of care home visits during the pandemic in the UK and the Netherlands. Design Qualitative semi-structured interview studies Setting and Participants Family carers of relatives residing in care homes in the UK and the Netherlands were interviewed remotely. Methods Family carers were asked about their experiences of care home visits during the pandemic, and specifically in the Netherlands after care homes had reopened. Transcripts were analysed in each country separately in the native language using thematic analysis, before discussing findings at multiple analysis meetings. Results Across 125 interviews, we developed four themes: (1) Different types of contact during lockdown; (2) Deterioration of resident health and well-being; (3) Emotional distress of both visitors and residents; (4) Compliance to guidelines and regulations. Visiting in both the UK and the Netherlands was beneficial, if possible in the UK, yet was characterised by alternative forms of face-to-face visits which was emotionally distressing for many family carers and residents. In the Netherlands, government guidance did enable early care home visitation, whilst the UK was lacking any guidance leading to care homes implementing restrictions differently. Conclusions and Implications Early and clear guidance, as well as communication, is required in future pandemics, and in this ongoing pandemic, to enable care home visits between residents and loved ones. It is important to take learnings from this global pandemic to reimagine long-term care, highlighting the value of socialising for care home residents.

Since the global COVID-19 outbreak in 2020, care homes across the world have taken 27 restrictive measures to stem infection rates and safeguard their vulnerable older adult 28 residents. In the UK, there was no government guidance on how care homes should operate 29 and how they should enable family visitation, leading care homes individually to all close down 30 to outside visiting from February 2020 onwards. Throughout the pandemic and in between 31 waves one and two, care homes in the UK have made individual decisions of how to ease and 32 then tighten visiting rules again. In the UK there was a substantial lag before effective and 33 sufficient personal protective equipment was available for staff, residents or visitors. There 34 was a significant outbreak of COVID-19 in almost seven thousand English Care homes (44%) 35

between March 9 th and July 19 th 2020 with 19,286 deaths of care home residents involving 36 COVID-19 between mid-march to mid-June 2020 1 , and a further 16,355 in wave two from 1 st 37

November 2020 to mid-February 2021 (35,641 in total) in England and Wales 2 . In the 38 Netherlands, both during the first and second wave over 800 Dutch care homes had a COVID-39 19 outbreak (approx. 35%). Care home residents have been most affected by with 40 approximately 50% of all COVID-19 deaths during the first wave occurring within care homes, 41 estimated at 7,400 COVID-19 deaths in care homes (29% of total deaths in care homes) 3 . 42

During the first wave of COVID-19, restrictive measures in the Netherlands included a total 43 ban for visitors to care homes. This total lockdown of care homes lasted two months, after 44 which a national pilot was started to cautiously re-open care homes for visitors. In a selection 45 of homes, one visitor per resident was allowed. 46

Many care home residents are aged 65+ and some live with dementia. Evidence is 47 starting to emerge on how the pandemic and associated restrictions are impacting on people 48 living with dementia in general, focusing on those residing in the community 4-7 . People with 49 dementia are found to deteriorate faster during lockdowns and restrictions in their own home, 50 being confined to their place of residence and not receiving external face-to-face social 51 support. This is also impacting on the mental well-being of family carers, as carers have to 52 J o u r n a l P r e -p r o o f take on additional caring duties 8 . Evidence on the impact of the pandemic on care home 53 settings is sparser however, with little evidence to date on how residents are faring during 54 continued lockdowns of care homes and changing restrictions. 55

Verbeek et al. 9 was the first study to report on compliance and experiences with 56 allowing visitors back into nursing homes after a ban during the COVID-19 pandemic in the 57

Netherlands. The study showed that in general the experiences with re-opening the nursing 58 home for visitors was very positive. Furthermore, even though there were national guidelines, 59 there was diversity among nursing homes with regards to the use of personal protective 60 equipment (PPE), and the arrangements of the visits. Findings from this study were mainly 61 based on a questionnaire and interview with formal contact persons in different nursing homes. 62

The authors of the study indicated that more research is needed into in-depth experiences of 63 family, residents, and staff in order to investigate the impact of the visitor ban and the re-64 opening of nursing homes. A subsample of those nursing homes was monitored during re-65 opening using a digital questionnaire, on-site observations and in-depth interviews 10 . Whilst 66 reopening appeared to be beneficial to the well-being of residents, healthcare professionals 67 expressed concerns over increased risks of infection whilst acknowledging the benefits of 68 reopening. This is supported by more research emerging on infection transmission of COVID-69 19 in care homes [11] [12] , as opposed to the experiences and psychological impacts of lack of 70 visitations on family members and residents. However, research across the globe indicates 71 the fine balance that needs to be struck between managing infection risks and quality of life 72 for residents [13] [14] [15] J o u r n a l P r e -p r o o f right before the time of the visit). Immediately after the visit, the family carers that were willing 107 to participate, were asked to perform a short interview (after signing an informed consent). In 108 addition, potential participants were asked if they were willing to participate in a more in-depth 109 phone interview one week after their first visit. Our data comprises of three partsin-depth interviews from the UK were conducted between 116

October and November 2020. Short interviews and in-depth interviews from the Netherlands 117 were both conducted during May 2020. The short interviews were conducted immediately after 118 the first visits since the lockdown. The in-depth interviews were performed within one week 119 following a first visit. Whilst studies in the UK and the Netherlands were conducted separately, 120 they focused on the same topics in both countries and were thus comparable. 121

In the UK, topic guides for family carers and for care home staff were co-produced in 122 a team of academics, clinicians, service providers, and unpaid carers of people living with 123 dementia who have experience of care homes. Topic guides involved questions surrounding 124 their experiences of visitation, how the pandemic has changed different aspects of seeing their 125 relative with dementia in the care home, communication from the care home, as well as safety 126 procedures and how care provision has changed for care home staff compared to before the 127 pandemic, and how they experience residents to experience these changes. Appendix 1 128 includes all topic guides. 129

In the Netherlands, short interviews were aimed at capturing the experiences of the 130 family carers during the lockdown and their first visit to the nursing home after the lockdown. 131

The focus was on the impact on their well-being, and the possibility to comply with all 132 guidelines that were in place (e.g. 1.5 m distance during the visit, no touching, wearing a mask, 133 etc.). The short interviews were held for 5 consecutive days. A group of researchers was 134 J o u r n a l P r e -p r o o f present at a nursing home during the first two to three weeks of the re-opening. All nursing 135 home residents were scheduled to receive a visitor once during the first week, where they had 136 a visitor. Unpaid carers who were scheduled to visit the nursing home were informed about 137 the presence of the research team and were asked to provide consent for having a short 138 interview with one of the researchers after they visited their family member. In addition, in-139 depth interviews were scheduled with participants who already took part in the short 140 interviews. Furthermore, in four other care homes, visitors were asked to participate in an 141 interview by telephone which was to be held within a few days after the visit. 142

During this in-depth interview participants were asked about the process of planning 143 their visit, the communication regarding the visitation, and again, compliance and impact on 144 well-being were discussed. 145

Background characteristics are described using frequency analysis in SPSS Version 25. The 147 interviews were summarized in a brief transcript (for the short interviews) or in a structured 148 response sheet (for the in-depth interviews). In these response sheets, (short) summaries on 149 the response of participants were given for each of the posed questions. Next, the data were 150 analysed thematically within the research team using thematic analysis 18 . Open codes were 151

given to sentences or paragraphs within the summaries, after which codes were grouped into 152 overarching topics/themes. The codes and themes were discussed repeatedly in order to 153 reach consensus on the most relevant themes with regards to the research question. 154

Carers and people with dementia were involved in different aspects of this study in the UK. 156

Three current and former carers were involved in all elements of this study, from 157 conceptualisation to conduct, analysis and dissemination. Public advisers, who were 158 reimbursed for their participation, helped develop the topic guides, ensuring that the questions 159 asked captured the important points in the lives of family members with relatives residing in 160 J o u r n a l P r e -p r o o f care homes. There was no public involvement in the Netherlands research planning and 161 delivery. 162

A total of 125 family carers (99 Dutch; 26 UK) participated in the study. Of the 99 Dutch 165 interviews, 65 short interviews lasting between 5-15 minutes and 34 in-depth phone interviews 166 lasting between 30-40 minutes were conducted. Table 1 provides some background 167 demographics of the interviewed carers. In the UK, the majority of carers were female (69.2%) 168

and adult children of the care home residents (61.5%). In the Dutch sample demographics 169

were gathered on the participants of the in-depth interviews (n=34). Half of the included carers 170 were male, half were female. The majority (70%) of carers were the adult child of the resident. 171

We developed four themes using thematic analysis: (1) Different types of contact during 173 lockdown; (2) Deterioration of resident health and well-being; (3) Emotional distress of both 174 visitors and residents; (4) Compliance to guidelines and regulations. Quotes for each theme 175 and sub-theme are presented in Table 2 . 176 THEME 1: Different types of contacts during lockdown 177

In the UK, many carers were not allowed face-to-face visits either since the pandemic started 179 or at different time points of the pandemic. Some were allowed to have face-to-face visits in 180 the garden, in customised pods or through windows, and a rare exception was for a carer to 181 visit their relative in their room. Where visits were allowed, care homes had booking systems 182 in place to manage the number of people in the homes at any time, as well as care home staff 183 to facilitate visits with family members. Similarly, in the Netherlands, relatives indicated that 184 during the lockdown they had no face-to-face contact with their relatives. However, the 185 majority of respondents from both countries indicated that the nursing homes employed 186 creative solutions to stay in contact with each other. Respondents talked about the possibility 187 to have window visits, to talk over the phone on a regular base, sharing information via internet 188 platforms, and to talk to their loved ones via video calling. 189

In the UK, some carers noted preferential visiting rights by some family members, 190 whilst they themselves were not allowed to go in or only rarely. This caused some frustration, 191 as care homes also failed to communicate why certain residents were allowed more visits than 192 others. In the Netherlands, during the re-opening of the nursing homes, each resident was 193 allowed only one visitor. However, most respondents indicated that it was quite straightforward 194 to decide who this person would be (as most of the time there is a 'first responsible family 195 carer'). 196

Both remote and the new pandemic-created face-to-face visits seemed to be of much less 199 benefit to family members and residents as opposed to true face-to-face contacts experienced 200 and enjoyed prior to the pandemic. In both countries, respondents indicated that visits were 201 more beneficial than remote engagement, however, these also had their downsides. Garden 202 visits for example were weather dependant, and if the weather was not suitable, window visits 203 were conducted instead, where care homes enabled these. There was an issue for some 204 residents who were not living on the ground floor, being excluded from window visits and 205 causing further distress to the new forms of alternative visiting forms. Many carers shared how 206 their relative with dementia was unable to understand socially distanced face-to-face visits or 207 hear their relative from a distance, highlighting how alternative visiting options could not 208 replace real face-to-face contacts. 209

Where remote contact was enabled digitally, such as via skype, there was rarely any 210 privacy, as care home staff had to support the resident in using a phone or tablet, and often 211 with limited understanding from the resident. Carers expressed concerns about being unable 212 to have a private conversation with their relative. Pod visits similarly offered little privacy, 213 highlighting overall how different types of COVID-19 visits have changed the dynamics, 214 compared to visits in the resident's room for example. 215

Some carers noted that the types of visits that were allowed would not have been taken 216 up by the residents if it was pre-pandemic. For example, one UK carer explained that her 217 husband would never have sat in the garden, so having a pandemic garden visits would be of 218 no use and benefit. Equally, pod visits or window visits would never have been used pre-219 pandemic and outside of an infection-controlled environment. 220

Whilst carers benefited to some extent from the socially distanced face-to-face visits, carers 222 also expressed their upset about needing to hold their relative's hand to feel close to them. 223

Missing the personal human touch between family members and residents was also 224 expressed as an issue where care home residents did not comprehend window visits and for 225 example got agitated due to the inability to be close to their family member. Although in the 226

Netherlands everyone was happy to be able to visit again, due to the guidelines of keeping 227 distance, no touching, and the wearing of face masks, a visit was sometimes experienced as 228 disappointing, difficult, or nervous. 229 THEME 2: Deterioration of resident health and well-being 230

Carers in both countries noticed an increased deterioration in symptoms and the condition of 232 their relatives with dementia during the pandemic and since lockdowns and other restrictions 233 had commenced. This not only included the residents' cognitive and physical symptoms, but 234 also their well-being. Where some residents had been active before the pandemic, since then 235 carers were complaining and concerned about the deteriorations in mobility within often 236 relatively short periods of time, both in the Netherlands and the UK. 

Visitors indicated that it was good see each other after a long time. However, Dutch and UK 258 experiences seemed to differ slightly in terms of emotional impact on both carers and 259 residents. In the Netherlands, most residents were happy and comfortable during visits 260 whereas a few were sleepy/absent or confused. Face-to-face contact had added value, but 261 relatives also mentioned that visits were different and less enjoyable than before due to the 262 lack of physical contact and not being allowed to walk outside. Some residents got agitated 263 not understanding why they could not touch their relative or why they were behind a window 264 or screen. These negative experiences were reflected in many UK carers, with residents being 265 agitated for a lack of understanding the physical distance and screens between them and their 266 loved ones, leading to emotional upset in many carers. 267

In the Netherlands, all respondents indicated to understand the importance to adhere to all 270 the guidelines. The initial response of most participants was that it was easy to adhere to the 271 guidelines. Similarly, UK carers expressed it was important to adhere to the guidelines. 272 However, where the resident was in the end of life stages, carers were allowed to hold their 273 relative's hand with restrictions eased surrounding physical distancing. 274

Whilst family carers mostly respected the guidelines, some family members also expressed 276 how difficult it was to adhere to them in both countries. They missed the personal touch and 277 struggled keeping a physical distance from their relative when on a face-to-face visit. It 278 seemed unnatural to keep a distance from their relative who they have not seen for a long 279 time. Others also mentioned the difficulties of wearing masks when on visits, and the 280 difficulties in engaging with their relative this way, as the person with dementia cannot see 281 facial features and the family member smiling for example, and also may struggle recognising 282 the family member. This was also raised by a UK family carer in light of staff wearing PPE in 283 the care homes which appeared to cause difficulties and in the carer's eyes, a care neglect. 284

This is one of the first studies to explore the impact of the pandemic on visiting care home 286 residents and comparing the experiences across two cultural settings. Whilst remote and the 287 new normal alternative types of face-to-face visits were available, they were unable to replace 288 genuine face-to-face visits in both countries. The difference between countries was that the 289 Netherlands had quickly implemented blanket guidance on care home visitation, enabling a 290 faster and smoother transition to reuniting family members with residents again. 291

Removing any face-to-face contact between family members and residents and 292 creating a care home contact bubble has detrimental effects on the well-being of both parties 293 involved. During the pandemic, alternative face-to-face visits such as window, pod, or garden 294 visits, have become the norm, where they were available and enabled by care home staff. In 295 addition, remote digital connections between family members and residents also have become 296 the new norm, reflecting what has occurred in community settings for people with dementia 297 and carers trying to engage with support services 19, 20 . 298

Whilst these were a lifeline to stay in contact with relatives to some degree, many 299 family members faced difficulties in engaging with different face-to-face visits in the UK. This 300 was because of a lack of clear guidance for care homes, whereas in the Netherlands, guidance 301 was released and implemented early on in the pandemic in May 2020. Thus, comparing the 302 data from these two countries with very different levels of government input as to how visiting 303 should operate, findings indicate how Dutch family members have benefited to a greater 304 degree from these alternative visits, leaving many UK family members excluded from care 305 homes for long periods of time. 306

Whilst guidelines were helpful in the Netherlands in enabling visits relatively early on 307 in the course of the pandemic, family members in both countries expressed how they 308 respected and understood the general public health measures (such as social distancing, 309 wearing PPE). However, they also raised the difficulties they experienced by not holding a 310 relative's hand on a visit especially for those with sensory deficits. Considering the emotional 311 turmoil experienced by lack of contact between residents and family members, and the 312 restricted nature of contact. Findings indicate the significance of social contact and their impact 313 on mental well-being, as evidenced outside the care home sector during the pandemic and in 314 pre-pandemic times 21 . This is also captured in a recent international report on the care home 315

visiting, which provides five major recommendations which are corroborated by our findings: Whilst this study benefits from a cross-country exploration of the topic and thus wider 349 representativeness of the findings, it is to be noted that this study only focused on family 350 carers. These also shared an insight on how residents were faring during those visits, but 351 findings are restricted to their perspectives. Considering the barriers of getting ethical approval 352 to conduct interviews with residents in the UK, linked with the inability to go into care homes 353 to collect data, obtaining the views from family carers are a suitable avenue of obtaining data. 354

Another limitation is that the topic guides in both countries were not the same, yet asked similar Office for National Statistics (ONS "we have no communication with them whatsoever in terms of the changes. They might in the summer when they decided garden visits could happen that was just by chance and one of them you know the activities coordinator telling me there's been no official written information or anything about any anything" UK ID21, female carer "They have purchased a phone for my mother, however she does not understand how it works. Therefore, I now call to the ward every day, and the staff then makes sure I can video-chat with her. So now me and my brothers call her every day." Dutch ID0512E3, daughter of resident "I didn't get told she'd had a fall; my brother rang me which is what I didn't want. So after it I did say to the home I need to be contacted I have asked you erm they did apologise for that erm but I went in the other week and they've changed her GP and she said you got the letter and I said no I didn't get a letter." UK ID10, Female carer, Daughter

"They made like French doors out to the outside where there had been a window and they built a room with a glass partition with a door in it across the middle of the room and most importantly it had a very good microphone and speaker system in it like a conference phone and I visited mum in there once but and sadly for me and for mum it didn't work. Because she couldn't, she was obviously failing as well she didn't realise I was on the other side of the glass, I think she sort of looked at she could only see the glass but she couldn't appreciate that I was on the other side." UK ID12, male carer, son "I did a window visit once, however my mother responded poorly to that, as it was a scary situation for her, as we could not touch each other for instance." Dutch ID0511J3, daughter of resident ''Normally I always hug and kiss her when I visit, and that's very different now. I would have preferred to be able to visit in her own apartment, and to be able to actually hug her, however that's not possible at the moment'' Dutch ID NCVC03, son of resident THEME 2: Deterioration of resident health and well-being Noticing faster deterioration 'I visited my father and I noticed a strong deterioration compared to 8 weeks ago. My father was just lying in bed the whole time, he was not really present anymore, and very hard to talk to, to get in contact with. This was a strong contrast with 8 weeks ago, then he was much more active, and easy to connect with. Also, I noticed he had very skinny arms and legs, and I heard that he fell out of bed a lot.' Dutch ID0513H3, son of resident In-depth interviews:

Below you can see an overview of topics to discuss with the participants. Based on the answers given 563 by the participants the interviewer can decide to ask additional questions or sub-questions. 564

Furthermore, participants are free to discuss other topics as well. 565 

It's really hard, it's almost like she relies on the staff now which is nice in one way. Because they're with her 24/7 but it's like she got upset and hugs them and I'm sat across the glass thinking [wanting to be] holding her hand and me giving her the hug

 ' It was quite easy to follow all the rules. It's fine like this. Luckily, my father isn't really much of a hugger, so keeping distance is also easy' Dutch ID 0512E7, son of resident "I think he's probably getting used to people wearing PPE all the time, particularly in the hospital so he was fairly laid back about it yesterday and I was able to hold his hand because I was wearing gloves as well so that was good. Because that touch is so important." UK ID28, family carer

'Not touching belongings is impossible. I brought clean laundry for my mother and put those in the closet. I also wanted to make coffee for me and my mother, which is something that you normally do when visiting. The staff did not want me to do that, but allowed it anyway. It is also strange that I was not allowed to bring strawberries that I prepared at home. After all, I did disinfect my hands an extra time' Dutch (ID0512E3)'I thought how can you leave someone who's got, who can't hear and there's face masks on so can't lipread and has not mental capacity to quite understand and grasp and that's, I felt like she was just left you know and it was like oh my god I more widely and what are your feelings about these restrictions? 506 Question 6. How has your relative's life changed in the care home since the pandemic? Are 507 they aware of the changes and are they socially engaging? 508