Care home lockdown and the impact on families: what hurt, what helped and what happens next

 

At the end of last year, we published a researcher blog from those involved in the Creative Covid Care study. This blog outlined their work on the experiences of families affected by care home lockdowns. It also offered an insight into doing rapid Covid research.

As a follow up, Professor Debbie Tolson and Professor Lynn Jamieson, co-investigators, reflected on their recent study in the below blog which originally appeared on the Health and Social Care Alliance Scotland website. We wanted to share it here too as we know many of our members and regular readers were eager for an update on this important piece of research. Read the full blog below.

Few of us imagined living through a pandemic and as we tried to make sense of breaking news early in 2020, we found ourselves in lockdown. The shock and repercussions of care home lockdown have been profound. Understanding the impact of this on families of older care home residents was the focus of a ‘rapid Covid study’ funded by the Chief Scientists Office.  A team of 13 researchers from the University of Edinburgh, University of the West of Scotland and University of Strathclyde, completed the study in 6 months. The pace of the study conveying the urgency and importance of the topic.

What we did

A variety of research methods were used to explore family carers experience of care home lockdown, to identify what helped them and describe the consequences for family carers in terms of their own health and wellbeing. The methods we used to do this included an online survey, and a range of interview methods to understand the family, staff and professional stakeholder perspective.

What we found

The online survey was completed by 444 participants (363 women 79 men 2 undeclared), most typically frequent visitors to a parent or spouse. Most participants agreed that they were preoccupied with the wellbeing of their relative in the care home and more stressed than before visiting was stopped. The majority also indicated losing sleep due to worry and being more depressed and unhappy than usual. Standard questions measuring psychological distress showed more distress than in the general population in the same time period.

36 in depth interviews enabled us to hear the psychological impact of the sudden lockdown from family members themselves. They talked of loss of ‘being there’ for a parent, spouse or other relative and worry about losing the little time that might be left:  it was a horrible feeling.  I keep thinking, was it like bereavement? (Katie, daughter). Fear that they would be sorely missed was common theme. Stella spoke for many when she talked of “a kind of background worry the whole time, yes … even though you know she’s been well cared for and such like” (Stella, daughter). Many were cut off from visiting a relative with dementia, a condition which can make communication of care without hand-holding and hugs very difficult.

The awful thing is not being able to hug her. I am desperate to give her a cuddle.  And she will sit in the chair and hold her arms out and say, “come over here” and it’s heart-breaking. … [Mother] said, “Why can you…” to this nurse …“… and my own daughter can’t?” (Leah, daughter).

Family members emphasised the importance of information from the care home and their gratitude for any efforts that staff made to keep them in touch with their relative. Experience ranged from receiving occasional impersonal email bulletins to multiple and regular forms of communication, including staff-facilitated video-telephony and regular personalised information updates.

‘[the manager said]“right, we’re going to put you onto your mum,”  “Oh mum I can see you.  How are you?” and her wee face just lit up; it was lovely to see it’

Semi structured interviews with 19 professional stakeholders provided different and sometimes contrasting views. The most worrying of which was reliance on social media impressions of the impact on family, rather than understanding gleaned from talking to relatives or care home staff. For those making policies and responsible for standards of care, the pandemic was an unknown scenario and the lack of preparedness was acknowledged. Ambivalence about the place of family relationships and family life within resident centred care and as an indicator of care quality was apparent within several interviews.

Conversations with staff from four care homes revealed their commitment to finding ways to connect families. This included grappling with new technologies, reaching for own mobile phones and improvisation with window/garden visits or simply holding someone’s hand for the last time.

Concluding Thoughts

What hurt was everything that added to the sense of personal loss and barriers to contact with someone precious. The fear and worry about a relative being alone, cut off and fading.

What helped was when the family trusted the staff and they were in touch. When they helped a relative to speak with, to see and feel part of the resident’s day.  When there was clarity about the rules and time to prepare for whatever the next day might bring.

What could happen next is that those who lead show that they value the contribution of family carers, and embrace the right of all to family life. Imagine that family carers were routinely seen as part of care home teams, involved and invited to be true partners in care; that would be a wonderful legacy to achieve.

What might happen next is this research sits on the library shelves, let’s work together to make sure that lessons are learned and that this research has real impact.

We would like to thank the ALLIANCE for giving us permission to publish this blog. The ALLIANCE is the national third sector intermediary for a range of health and social care organisations and a strategic partner of the Scottish Government. Their vision is for a Scotland where people of all ages who are disabled or living with long term conditions, and unpaid carers, have a strong voice and enjoy their right to live well, as equal and active citizens, free from discrimination, with support and services that put them at the centre. You can find out more about the ALLIANCE on their website and Twitter, @ALLIANCEScot

Read more SDRC Blogs

Early Career Researchers: Martha Pollard

We hope you are enjoying our blog series which is celebrating our next generation of researchers, featuring those that were in the SDRC Annual Report 2019/20.  Our final blog is by Martha Pollard, from the Alzheimer Scotland Dementia Resource Centre. Read about...

COVID Impact on ECRs: Tharin Phenwan

This week on the SDRC blog we are continuing our Early Career Researcher blog series on the impact of COVID.  Today's blog is by Tharin Phenwan. You can read the entire blog series here. My name is Tharin Phenwan. I am a second-year PhD student at the University of...

Early Career Researchers: Angela Gregory

The SDRC are committed to celebrating our next generation of researchers by publishing a series of blogs to PhD Students/ Early Career Researchers.  This week we are featuring those that were in the SDRC Annual Report 2019/20. Read about the research by Angela...

Early Career Researchers: Tharin Phenwan

Today's guest blog is from Tharin Phenwan, who is a PhD student at the University of Dundee. Throughout August, the SDRC are celebrating our next generation of researchers by devoting a series of blogs to PhD Students/ Early Career Researchers. Read the series so far...

COVID Impact on ECRs: Fatima Alhayan

Today, we are pleased to share with you a guest blog by University of Strathclyde PhD student Fatima Alhayan. If you haven't seen our other COVID impact blogs yet, or would like to catch up with the full series, you can read them here.  I am in the...

Early Career Researchers: Kieren Egan

We are delighted to share this guest blog from Kieren Egan, a Research Associate from the University of Strathclyde. Read below about Kieren's own PhD experience and life beyond in various research posts around the world. Kieren's blog is part of an entire series of...

Early Career Researchers: Samuel Quinn

Throughout August, the SDRC are celebrating our next generation of researchers by devoting a series of blogs to PhD Students/ Early Career Researchers. Read the series so far here This blog is by Sam Quinn, who is based at the University of the West of Scotland. His...

Early Career Researchers: Krista Winkler

The SDRC continuing to publish a series of blogs from PhD Students/ Early Career Researchers in dementia and brain health that were featured in the SDRC Annual Report 2019/20.  Our blog today is from Krista Winkler, a former MSc student in research relating to the...

COVID Impact on ECRs: Josie Fullerton

Today's blog is part of our COVID Impact blog series, where we are sharing the experiences of ECRs whose research has been affected by COVID, as well as helpful insights and tips to how to work through this time. If you are a dementia or brain health researcher and...

Early Career Researchers: Clair Gamble

Our final blog in August's ECR series is by Clair Gamble, who is a PhD student at the University of Dundee. However, stay tuned in September as we may have to continue the series! Read the series so far here I am a Registered Nurse and final year PhD student at the...