Professors Tolson and Jamieson reflect on their recent study on the experiences of families within care home lockdowns
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.
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.
Professors Tolson and Jamieson will be hosting an ALLIANCE members event on 29th April 2021 in order to discuss the findings from their research further. To register please email firstname.lastname@example.org