The Experience of COVID-19 Visitor Restrictions among Families of People Living in Long-Term Residential Care Facilities during the First Wave of the Pandemic in Ireland
Abstract
:1. Introduction
2. Materials and Methods
2.1. Design
- What are your concerns regarding your relatives/friends care during the COVID-19 outbreak?
- Please specify the areas that you need information about with reference to COVID-19 in Residential Care Facilities
- If you have time to reflect, please share your personal experiences of how the restrictive public health measures have impacted on you and your involvement in your relative’s/friends’ care
2.2. Sample & Recruitment
2.3. Data Analysis
3. Results
3.1. Altered Communication and Connection
3.1.1. Staying Apart
“Now that the restrictions are being eased a little, and there is talk of visits, I’m not sure it will be that great: I’m assuming I won’t be able to hug her or hold her hand, I’ll have to wear a mask and she won’t be able to see me smile at her, so I think it will be quite hard to communicate, given that she has such problems with her speech: sometimes a smile has been the most meaningful and reassuring expression of love between us. But I am so very grateful that she is still here...”
3.1.2. Information Sharing
“It was very frustrating getting information, I know the Nursing Home had a lot of staff that went down with COVID-19, I think Government should have sent (an) Army of hired Healthcare in. There were weeks we couldn’t talk to anyone as there were no staff. They sent us a text that was sent to everyone. It was very upsetting…”
“It is so distressing worrying about him now as it is all new staff and patients for him now to contend with- how unfair is that? We can’t see the room he is in. We ring every day since COVID-19 to see how Dad is doing and I don’t know if we didn’t ring would we ever have gotten a phone call only to say he was being moved. I don’t sleep at night now the worry and stress has affected my life and my family”
“Most of the staff in her facility are foreign with limited English and it is difficult to communicate exactly what my mother needs…”
3.1.3. Challenges with ICT
“My mother is blind as well as suffering from dementia so the use of digital devices while offered by the care home was not of any value. Even phone call proved to be useless she refused to talk! So I sent cards and letters which staff read to her.”
3.1.4. ICT Lifeline
3.2. Emotional and Psychological Impact
3.2.1. Fear That Relative Feels Abandoned
“As a daughter I have worried about my mother. I was afraid that I would never see her again and that she would die alone and not know why her family did not come to her”
3.2.2. Impact on Own Health
“I have found the restrictions very distressing…. I have found the past few months so hard and draining that I have had to go on anti-depressants.”
3.2.3. Fear of COVID-19 Entering the Home
3.2.4. Feelings of Worry, Regret and Grief
“This has affected me and my family hugely. We feel that we are on the outside looking in. We are not included in any of the care at all due to COVID-19 restrictions and this makes us feel very helpless.”
3.3. Protecting and Caring Role of Staff
3.3.1. Management of COVID-19
“The staff for the most part have been fantastic, and we appreciate the sacrifices which they have made and continue to make to safeguard the health and well-being of the residents. I will be forever grateful to them for their care and support to my lovely dad”
“Thankfully there were no cases in the Nursing Home and I believe that was down to the Management who didn’t take a day off for three months to keep their Residents and Staff safe. They communicated with us at least twice a week and also made time to contact us a few times a week with videos, texts and videocalls with Mum. We can never thank them enough. They were well prepared for the pandemic and kept on top of all the guidance. They informed us of every change made by the Dept of Health before it happened and we were happy to receive plenty of nursing and medical progress information on our Mother also.”
3.3.2. Balancing Risk
“…Quality of her life must be balanced against the risk of infection. This cannot go on for ever, no touch, no sitting in the garden, no outings, no visits to my house for a meal or just a change of scene”.
“The refusal to acknowledge other options for dealing with this outbreak of viral illnesses and the mishandling of how best to treat and care for the very elderly, vulnerable and already sick people at home or in Nursing/care homes has shown up the lack of skill/management in preventing some deaths and containment of spread of infection.”
“My son is neither ’over 70 nor medically vulnerable’ but the same visitor restrictions apply - not really in line with disability policy…”
“a price they were willing to pay” to keep their relative safe.
3.3.3. Supporting Family and Residents
“It is a tough time for older people, but the reality is she is very well cared for both physically and emotionally by wonderful staff and she is safe and protected.”
3.4. Family Role
“The home has been brilliant. However, lack of visiting, social activities and usual exercise has meant my Father’s health has declined a lot faster. He no longer remembers who I am which is extremely hard, but the staff are very aware and caring to both of us. His mobility has reduced which has affected his balance and initially at the beginning of COVID-19 he felt frustrated, confused and lonely for family. I feel that if I could have continued to see him on a regular basis, he would still know me. The staff tried phone calls and WhatsApp videos, but he didn’t like either of them or got frustrated. I totally understood why the restrictions were in place and I’m thankful that he is healthy and happy but I’m sad to have lost our connection”
3.4.1. Lack of Social Interaction
“… I note that (his) psychological state has deteriorated. I don’t know how much stimulation he is receiving. Prior to COVID-19, he was used to daily one-to-one conversation. Now he makes no effort to communicate through a Perspex screen.”
3.4.2. Impact on Resident’s Health
“Not an hour goes by that I think of him and worry is he ok, is he being cared for? I miss taking care of him and talking to him, he is my family…Before he was hospitalized he could feed himself and walk, now he has to be fed, can’t walk and (is) incontinent.”
“My mother has slipped further into her dementia. She was used to visitors 4 times a week and then dropped to none. Her level of consciousness has decreased as has her speech.”
3.4.3. Change in Routine
“Residents have been deprived of family visits and the ability to take part in important activities such as music, bingo, art and physical activities which are so important to their mental and physical health.”
“Our worlds turned upside down on 7 March. At end-of-life, my mum is now 90, the future looks bleak. Daily mass, communal meals, daily activities, hairdresser, visits out every Friday and Sunday to see children and grandchildren in their homes all stopped. She is confined to her bedroom. Like a prison room with nothing to look forward to. Care with (activities of daily living) continue but there is nothing else.”
“The home has been brilliant. However, lack of visiting, social activities and usual exercise has meant my Father’s health has declined a lot faster. He no longer remembers who I am which is extremely hard … His mobility has reduced which has affected his balance and initially at the beginning of COVID-19 he felt frustrated, confused and lonely for family…If I could have continued to see him on a regular basis, he would still know me.”
3.4.4. Monitoring and Advocating
“It is very difficult not being able to visit for both the patient and me. If anything was out of place you would have it attended to calling in. Now you feel helpless when you hear of something amiss.”
”I can’t go inside the (nursing home) door. I can’t fix her radio. I can’t sort out her mobile. She is so confused I don’t know what is true/real in her experience. I can’t see for myself. The staff are kind but she is difficult and they struggle to communicate with her. I can’t act as intermediary.”
“The first few weeks were so distressing for me, even though I knew that the staff are kind and take good care of her. I was worried that they would be so busy and preoccupied that they wouldn’t have time to spend on her… Mum is not a loud, demanding or complaining person, so I feared she might be lost without me to speak up for her, notice little things that needed attention and do certain things for her.”
4. Discussion
4.1. Role of Family in Care Provision
4.2. Impact on Family, Residents and Staff
4.3. Model of Care Delivery
4.4. Limitations and Strengths
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
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Cornally, N.; Kilty, C.; Buckley, C.; O’Caoimh, R.; O’Donovan, M.R.; Monahan, M.P.; O’Connor, C.D.; Fitzgerald, S.; Hartigan, I. The Experience of COVID-19 Visitor Restrictions among Families of People Living in Long-Term Residential Care Facilities during the First Wave of the Pandemic in Ireland. Int. J. Environ. Res. Public Health 2022, 19, 6559. https://doi.org/10.3390/ijerph19116559
Cornally N, Kilty C, Buckley C, O’Caoimh R, O’Donovan MR, Monahan MP, O’Connor CD, Fitzgerald S, Hartigan I. The Experience of COVID-19 Visitor Restrictions among Families of People Living in Long-Term Residential Care Facilities during the First Wave of the Pandemic in Ireland. International Journal of Environmental Research and Public Health. 2022; 19(11):6559. https://doi.org/10.3390/ijerph19116559
Chicago/Turabian StyleCornally, Nicola, Caroline Kilty, Catherine Buckley, Rónán O’Caoimh, Mark R. O’Donovan, Margaret P. Monahan, Caroline Dalton O’Connor, Serena Fitzgerald, and Irene Hartigan. 2022. "The Experience of COVID-19 Visitor Restrictions among Families of People Living in Long-Term Residential Care Facilities during the First Wave of the Pandemic in Ireland" International Journal of Environmental Research and Public Health 19, no. 11: 6559. https://doi.org/10.3390/ijerph19116559
APA StyleCornally, N., Kilty, C., Buckley, C., O’Caoimh, R., O’Donovan, M. R., Monahan, M. P., O’Connor, C. D., Fitzgerald, S., & Hartigan, I. (2022). The Experience of COVID-19 Visitor Restrictions among Families of People Living in Long-Term Residential Care Facilities during the First Wave of the Pandemic in Ireland. International Journal of Environmental Research and Public Health, 19(11), 6559. https://doi.org/10.3390/ijerph19116559