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