Authors: Kathryn Hinsliff-Smith, Jane Wray, Caroline White and Janice Keefe
October 11th 2021 was Canadian Thanksgiving Day and LTCCOVID also hosted an international seminar on care home research. This enabled us both to discover similarities between the UK and Canada (Turkey for celebrations!) and connections through our research work in the care home sector through the pandemic.
The seminar enabled three research teams to share their findings from recently completed studies delivered by researchers (@livinginhope @EWolverson @SallyBlonde1 @carolinannwhite @dist_care @HinsliffK @Jayne_NurseProf @SarahCGriffiths @SALTY_LTC). All three studies, two conducted in the UK (at Hull and DMU) and one based in Atlantic Canada, had one central theme; to understand the experiences of the care home sector during the pandemic and imposed lockdowns or lockouts.
Each study focussed on different elements – these ranged from the experiences of previously ‘regular’ care home visitors during lockdown; family and friends’ experiences of keeping in touch from a distance; the application of care home policies using implementation science. However, despite the differences in focus, location, care delivery and methodology, there was a parity of understanding that there are emerging themes which we wish to share with you here.
Across the three studies, conducted in 2020-2021, we have gathered a multitude of experiences, through some 90 completed online surveys, 80 one to one interviews and 30 follow up interviews with family/friend carers and 64 interviews with LTC staff and key informants. As well as other investigative ongoing work in the UK (Universities of LSE, Leeds, Nottingham), Canada and work conducted in the Netherlands, there is a growing evidence base for a real understanding of the impact that restricted access to care homes residents has had at different levels, and about what is needed for the future. The profound effect on relatives, as seen by work on distance caring, residentsexperiences, care home staff and managers (DAMSON study) is without doubt unprecedented but what can we learn from this?
In the UK there have been scathing reports, on the failings of the UK Government on actions taken before and during the pandemic (see the UK Report, and two Amnesty Reports ‘The State Of the Worlds’ Human Rights’ and ‘As if Expendable’ ) as well as individual national responses to the pandemic (Low et al., 2021). Similar reports at both Provincial and Federal level were submitted in Canada including a report from the Canadian Armed Forceswho were called in to help with the devastation in LTCs and proposed solutions from Royal Society of Canada. In addition to these findings, what can we as researchers share so that lessons can be learnt?
Here are some fundamental and key aspects that were uncovered across all three studies, summarised below as key messages and recommendations.
Five key messages
Communication: This was identified by all three studies and included communication between care home residents, their families and friends, and between care homes and families. Good, clear communication ensured carers’ information needs were met, and they could maintain their relationship with care home residents and receive updates about their wellbeing. We reported blurred lines of communication between relatives and the care home leading to levels of anxiety and distress; there was also in some instances a gap between family members’ needs for information and reassurance, and the ability of care homes to provide this, given the pressures within the sector at this time.
Working together, collectively: We are acutely aware that care homes, in any country, were put under enormous pressures to ‘do the right thing’ and found themselves being the arbitrator between comprehending the limited guidance that was initially available through to making sense of guidance so that it had meaning and application to their own settings (for example the guidance produced by the British Geriatrics Society). This sometimes led to neglect of engaging with family/friend carers in discussions or decisions about visiting, or maintaining contact, although examples of good practice have been documented (Hockley et al., 2021). Some care home staff even resorted to setting up WhatsApp groups in certain regions of the UK to decipher the guidance.
The pain of separation: In common with other recent research, the three studies highlighted the pain and distress for families and friends of being unable to visit or contact their relative easily. Care home residents were reported to feel lonely and unable to understand the reasons why visits stopped.
Through the pandemic patterns of visiting changed for many families and friends of care home residents. People who had previously been frequent visitors were unable to visit and were suddenly cut off from the care home and the person they visited. For some carers, while less frequent visits were more usual, the pandemic meant that they also had less contact. Our studies highlighted the importance of the involvement of family and friends in the lives of care home residents, whether through visits or through more remote means of contact, and the importance of both forms of contact being supported by care homes of any size or location.
Use of technology: Technology was positioned as a key facilitator of contact for care home residents at the beginning of the pandemic. All three studies saw evidence that technology was used during restrictions, for example, WhatsApp, Facetime, online calls. For some people technology provided a helpful and meaningful way of maintaining contact. However, for others, using technology was not a positive experience and was sometimes seen as affecting the relationship between family carers and their relative. This was sometimes seen as a power struggle between a relative requiring attention and the care home staff juggling multiple demands. At other times, the technology further confused and upset residents with dementia. Other ‘low tech’ forms of keeping in touch were also employed (such as the phone and posting cards and gifts), and these worked well for some.
The importance of the staff role: The studies highlighted the importance of staff support in facilitating communication with families. This required staff to have access to technologies, skills and confidence to support communication (especially where technologies were required) and time. There were some examples of tensions between family carers and those working in the care home due to the time required by staff to facilitate new forms of communication. Often staff were required to provide direct support with some residents and their families to aid communication methods, such as Skype, Face Time, and to foster continued relationships.
Four overarching recommendations drawn from all three studies:
- The care home sector can no longer be viewed as the poor relation in terms of important health and social care provision. Not only does this require ring fenced funding but going forwards there needs to be a more holistic view of the importance that family carers and friends play in providing emotional health and well-being support. Family carers need to be seen as part of the care package not ‘outsiders’ and certainly not ‘just visitors’ but essential providers of care. Carers who are unable to visit regularly (e.g. because of distance, ill health, other caring roles) also need to be recognised as an important element of residents’ support networks. Ensuring residents are supported to benefit from contact with relatives through face to face visits or more distanced means must be recognised as an essential social care role.
- Family and friends involved in the care of residents need to be considered part of the solution and recognized for the essential partner in care that they are. Where formalized programs allowing family/friend carers access to the care facilities were put in place, no attempt was made to consult with these family/friends during the development or the implementation phase. Consequently, inequities occurred by limiting schedules access to regular work hours; and creating family conflict about “who” would be the designate carer. .
- Whilst technology will have a place within the care home sector going forwards, it is not a panacea to solve all communication issues. There are many ways for families to remain in contact with residents, and the approach best suited to individual needs should be explored and supported. However, despite the value of ‘high’ and ‘low’ tech methods of staying in touch, face to face visits are essential for some who find remote contact especially challenging.
- Although the duration of care home closures due to COVID are unprecedented, it is not unusual for care homes to close for short periods, for example in response to infection measures. It is important to learn from experiences during COVID, which can inform practice during short-term closures. These lessons include ensuring that effective ways of residents keeping in touch with family and friends are identified on an individual basis; that there is good information sharing and updating to alleviate family anxiety; that a balance is sought between limiting the spread of infection, and ensuring that face to face contact is reinstated as soon as possible, including where necessary socially distanced visiting.