Approach

This project investigates the impact of social distancing and other behavioural interventions on care home communities with a focus on the health and longer-term impacts on family carers. Importantly it captures and shares the creative solutions that are mitigating negative impacts of care home lock down on both the family on the outside and the residents and staff on the inside. It identifies the likely longer-term health consequences of COVID-19 through the impact of social distancing and other behavioural adaptations made within the care home sector on those providing support (family carers and friends) to care home residents and as well as care home residents themselves.

The impact of the lockdown in Scotland as a result of the coronavirus pandemic led to sudden disruption of vital relationships for what has been recognised as a hidden and already marginalised population (Victor 2012). Since 12 March 2020, all care homes for older people in Scotland have imposed a ban on family/relatives and other non-essential visitors from visiting their relatives in such care settings.

While we do not have the latest data on the number of older residents in care homes, the data as of 31 March 2017 indicate that there were 35,989 adults in Scottish care homes (NHS Information Services Division, 2017).   Older care home residents with multiple comorbidities are at high risk of mortality from coronavirus and the high numbers living with cognitive impairment including dementia (estimates 70-90%) and 35% with severe dementia will find it difficult to understand the changes or personal risks (Lithgow et al 2011, Alzheimer Society 2016). A key concern for family carers following admission to a care home is their continued involvement in their relative’s life and desire to keep them safe. The current lock down will compound fears and anxieties and possibly amplify the known psychological impacts of family caring.

In addition to capturing the impact on family carers, this study will gather lessons about innovative good practice in the face of the pandemic. Without any mitigating action, the care-home sector’s shutting out of visitors and other behavioural measures such as the use of personal protection equipment (PPE) are likely to have a significant impact on not only the wellbeing of residents but also their visiting family and friends. Leaders within the care home sector have been gearing up their use of virtual means of supporting contact to sustain family relationships and connectivity.  Continued social recognition from ‘significant others’ (loved ones, family, friends, carers) is known to be essential for mental health. For older people in residential care this comes from continued contact with family and friends (Sjöberg et al 2016) and sympathetic, friendly hands-on care from staff (Watson 2016). A sense of reciprocity, feeling of connectedness to others and to a community or neighbourhood is essential for both physical and mental health (Bruggencate et al, 2017; Gleeson et al, 2019). It is well documented that family and friends play a significant role in meeting the social and psychological needs of older individuals, and that many of their informal carers are themselves older people, with spouses and then children in the front line (Hanratty et al 2007, Pickard 2015).

Care homes’ ban on visits is likely to exacerbate loneliness among older people, already a significant problem (Victor 2012, Sullivan et al 2016) and to create mental distress  for family members and loved ones who are unable to visit their relatives in long-term care. The supplementary care family members provide helps to ensure that their relative’s  care remains person centred (Port et al, 2005), an increasing challenge for care homes given the unforeseen rate of staff illness and even death as a direct result of the epidemic. Further as external visitors who know the person well can raise concerns about care standards of care and adult safeguarding (Lavender and Hafford-Letchfield, 2015). For both an older care home resident and an older care giver in the community, disruption of contact without mitigation may compound vulnerability to depression and accidents likely to place additional burdens on services. At the extreme end, this may lead to ‘giving up’ in the form of suicide ideation and behaviour (Hafford-Letchfield et al, 2019).  

Former carers, that is carers whose caring responsibilities have ended, are known to suffer disproportionately from loneliness and depression in the aftermath of care (Larkin and Milne 2020); significant others deprived of care-home visitors without other channels offering a sense of ‘being there’ may be similarly vulnerable. Removal of the possibility of ‘being there’ (Brownlie, 2014) is likely to increase anxiety, sense of guilt, even a sense of foreboding if they cannot be with their loved ones should they become terminally ill during the visitation ban, increasing risk of complex grief and depression. The impact may extend beyond friends and family to the local community. This is because labour mobility and globalisation means that members of extended families at a distance may nevertheless have developed visiting roles and experience grief and bereavement if they feel deprived of the opportunity to plan any meaningful contact (Sherlock et al, 2020).

An understanding of how to support the health and wellbeing of family caregivers and loved ones supporting older people (Larkin, Helmwood, Milne 2019) as well as contributing to the evidence base concerning best practice in the social care sector is therefore significant given the impact the pandemic is generating.

Aim

To investigate the impact of social distancing (lock down) and other behavioural interventions on care home communities with a particular focus on the health and longer term impacts on family carers and to learn from and share positive creative practices.

Research questions

  1. What is the social and emotional impacts of social distancing and other behavioural changes imposed due to the COVID-19 pandemic on family carers of older relatives residing in care homes?
  2. What creative practices have been introduced to keep families and friends connected and involved in care decisions of relatives who reside in care homes, and which good practices can be shared and rolled out?
  3. What strategies are available to support family members coping with the mental health impact of isolation caused by social distancing required by the COVID-19 pandemic?
  4. What is the specific role of technology in facilitating connections between care home residents and family members?
  5. How can policymakers support the process of connecting family members with their relatives in care homes? How can we innovate long-term care for older people in care homes keeping in mind eventualities such as COVID-19, so that friends and families can continue to be connected with their relatives in care settings?

COVID-19 has impacted almost every aspect of our lives and there is little empirical evidence on how it is impacting us socially and psychologically. We have come across two studies that have just started: one led by psychologists at the University of Sheffield looking into the mental health and social impacts of the COVID-19 epidemic on the mental health and behaviour of UK citizens; and another study led by UCL exploring the psychological and social effects of COVID-19 among adults living in the UK. We have not as yet come across any studies that explore the experiences of people at the health and social care interface and it is hoped that our proposed study will provide a range of insights on this particular area and specific to Scotland, thus contributing to informing policy and practice.

Methodology and Research Design

We will adopt a mixed methods approach (Bryman, 2006) to capture the social and psychological impact of social distancing on relatives. Drawing on qualitative research methods (Creswell, 1994; Denzin and Lincoln, 2000), our plan is to capture the range of experiences through conversations that would allow the family members to narrate their experiences of social distancing from their relatives in care homes (RQ 2, 3, 4, 5). In order to capture the impact on family members’ mental health and psychosocial wellbeing, we will use the General Population (GP) Core form (RQ 1; https://www.coresystemtrust.org.uk/instruments/core-gp-information/). While talking to care home residents would have been desirable, we acknowledge how the pandemic is impacting care homes and there is no guarantee that over the next few months relatives, let alone non-relatives, would be allowed access to care homes.

The mixed methods study design and sampling strategy reflect the importance of obtaining breadth, depth and data sufficiency at pace. Recruitment of study sites requires pragmatic decisions and understanding of the changing realities currently facing the care home sector.

Recruitment and Sampling

A number of members of research team have a close working relationship with a series of care homes. Accordingly, we have had preliminary discussions with c.20 potential study sites to yield a viable convenience sample with maximum variation sampling.  We have already enlisted in principle agreement with 6 care providers that have care homes of various sizes spread across rural/semi-rural and urban areas; we are also awaiting a formal response from other care homes. In addition, the ENRICH Scotland (https://enrich.nihr.ac.uk ) network of research ready care homes has agreed to work with us to fast track recruitment of additional study sites to minimise the risk of site attrition should this become an issue during the project lifetime of the project. Participating care homes will be sent information indifferent formats (email, social media messages, face book, letter) about the project to distribute to family and friends who would under normal circumstances visit residents.   Those interested in taking part can either contact the research team directly or agree for their contact information to be shared with the research team.

Care homes selected will be spread across the East and West of Scotland and we intend to include for profit (large), for profit (small, family run), council funded care homes, not for profit, and charity run care homes to maximise variation sampling In all, we intend to recruit c. 50 relatives.

We are aware that the staff in many care homes will be overwhelmed at present with not only looking after sick and frail older people, but also coping with shortage of staff who themselves are off sick or self-isolating. If we face unanticipated challenges in participant recruitment, we would use social media (for example – Twitter and Facebook; Felt, 2016) and supermarkets notice boards to maximise the study reach. We realise some of these avenues might involve a fee, therefore we have budgeted for such publicity.

Once participants are recruited and informed consent is in place, we propose to use telephones to carry out interviews with the family members who have relatives in care homes, for which we will use a qualitative interview guide. In order to get a sense of the psychological distress and mental health issues experienced by relatives, we propose to use the General Population (GP) Core form (https://www.coresystemtrust.org.uk/instruments/core-gp-information/) which will be administered via an online survey link sent to the study participants; we believe this will be cost effective and speed up analysis. We will have the choice of a paper version would only be used for those who wanted it; another option would be for the study team to complete questionnaire with the relatives over the phone.

We propose to use telephone interviews with care providers to map the kind of creative practices adopted by care homes in communicating with residents’ relatives (RQ 1, 3, 4, 5). One of the care homes that has agreed to take part in the study has already asked for the questions to be emailed for them to reply to us in writing. Hence we would offer different choices to maximise participation, recognising that care homes staff would be under strain to follow a specified method of data collection.

We will use a range of communication means to carry out in-depth interviews with practitioners working in third sector carer’s advocacy organisations and policymakers. These will include FaceTime, Messenger Video, Skype, Zoom or Microsoft Teams – the exact method will be determined by the accessibility of such tools to chosen key informants. Moreover, in order to inform our understanding of the use of technological innovations, we will approach experts in the telecare industry as well as IT colleagues in our institutions. Here too, we will use either electronic communication means to carry out interviews.

Data management

Prior to the data collection phase, the RAs will be trained by the Research Team on research tools and research ethics and data management procedures. To ensure that no data are lost, we will develop a clear data management protocol, including daily upload of survey and interview data into the secure site of University of Edinburgh. During data collection, RAs will be supervised by the research team.

Data Analysis

Once the fieldwork is complete, we will begin data coding (survey) and transcription of interviews. Survey data will be analysed using SPSS Statistics (Version 25) to investigate the mental health and psychosocial wellbeing variables of the study participants. We will employ standard practices for systematic, reliable, in-depth analysis of the qualitative (interview) research data, employing Nvivo (Version 11) to assist in data reduction and organisation.

Ethical issues and approval

We acknowledge the distress being caused by Covid-19 generally and in particular for those who are unable to visit their relatives in care home settings, who may themselves be vulnerable in a range of ways. Our project will therefore be informed by the University of Edinburgh ethical guidelines to negotiate informed consent, ensure anonymity and confidentiality, and avoid harm while carrying out fieldwork. We will seek ethical approval from the Research Ethics Subcommittee in the School of Social and Political Science at the University of Edinburgh before the commencement of the study. All participants will be provided with full information about the research and will be encouraged to ask questions and seek clarifications as necessary prior to deciding whether to take part in the project.

Impact plan

Translating the findings from our study to inform policy and practice is a key priority for the research team. With that in mind, the study will institute a Project Advisory Group, consisting of user groups and dissemination and policy engagement experts. Albeit small in scale, we believe our proposed study has the potential to be pioneering in terms of the innovation that we are proposing, that might engender a sense of ‘connected home’ for reconceptualising the care of older people.

To optimise policy related impact of the research we will engage with both policy makers and policy implementers during and after the research process. It is important that policy makers receive early notification of the work so as to take an active role in encouraging relevant sector organisations to participate; and to stimulate an interest in the research outcomes and promote discussion with other key policy players. The engagement with policy makers will also involve a policy roundtable at the end of the research in which we will co-produce the development of a plan for implementing the findings, and schedule our support with policy briefings.

Iriss will secure presentation opportunities with senior policy makers within Scottish Government via the Social Work Strategic Forum, which also enjoys ministerial presence; as well as lead local authority figures via Social Work Scotland’s Chief Social Work Officer group and it’s related special interest groups. We will hold information seminars for the policy implementing organisations (local authorities, private- and third sector), and allied partners working with the social care sector. The sessions will incorporate participation from bodies with a scrutiny and inspection role, such as the Care Inspectorate, Healthcare Improvement Scotland, Scottish Social Services Council, as well as sector-representing organisations such as Scottish Care and the Coalition of Care Providers Scotland. Separate practitioner forums will be held to facilitate the widest possible distribution of the research findings and recommendations, as well as buy-in for change implementation.

These activities will bring together broad representation from across the sector and engender discussions about how best to achieve fast, effective and sustainable implementation and impact.

Project Advisory Committee

  • Scott Morrison, Professional Accreditation Advisor & Head of Assessment Centre, Care Inspectorate
  • Alistair Brown, National Director, Scottish Association of Social Work
  • Irina McLean, Project Leader, NHS Research Scotland Central Management Team
  • Dr Emma Law, Manager, Neuroprogressive and Dementia Network (NDN) & Joint Chair ENRICH Scotland
  • Derek T Barron, Director of Care, Erskine Care Homes
  • Dr Susan Shenkin, Clinical Senior Lecturer in Geriatric Medicine, NRS Ageing Specialty Lead, Joint chair ENRICH Scotland, Geriatric Medicine & Usher Institute, University of Edinburgh, Royal Infirmary of Edinburgh
  • Lesley Reid, Senior Health Promotion Specialist, Public Health, NHS Lothian

References

  • Alzheimer’s Society. (2016). Fix Dementia Care: NHS & care homes.  Available at: https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/fix_dementia_care_nhs_and_care_homes_report.pdf; accessed: 1 April 2020.
  • Bruggencate, T., Luijk, K., and Sturm, J (2018). Social needs of older people: A systematic literature review. Ageing and Society, 38(9), 1745-1770. doi:10.1017/S0144686X17000150.
  • Bryman, A. (2006) Integrating quantitative and qualitative research: How is it done? Qualitative Research, 6(1), 97-113.
  • Creswell, W. J. (1994) Research Design: Qualitative and Quantitative Approaches. London, Sage.
  • Denzin, N and Lincoln, Y. (2000). Handbook of Qualitative Research (2nd Edition). Thousand Oaks, Sage.
  • Gleeson, H. and Brownlie, J. (2014). Ordinary Relationships: A Sociological Study of Emotions, Reflexivity and Culture. Palgrave Macmillan.
  • Hanratty, B., Drever, F., Jacoby, A., and Whitehead, M. (2007). Retirement age caregivers and deprivation of area of residence in England and Wales. European Journal of Ageing 4, 35-43.
  • Larkin, M. and Milne, A. (2020). Knowledge generation and former carers: reflections and ways forward, Families Relationships and Societies, DOI: 10.1332/204674319X15761550214485.
  • Larkin, M., Henwood, M., and Milne, A. (2019). Carer‐related research and knowledge: findings from a scoping review. Health & Social Care in the Community 27, 55-67.
  • Lavender and Hafford-Letchfield (2015). Quality Improvement through the Paradigm of Learning. Quality in ageing: policy, practice and research 16(4), DOI: 10.1108/QAOA-02-2015-0009
  • Lithgow, S., Graham, J.A. and Browne, D. (2011). Estimating the Prevalence of Dementia: Cognitive Screening in Glasgow Nursing Homes. International Journal of Geriatric Psychiatry, 27, pp. 785-791.
  • Lloyd-Sherlock, P., Ebrahim, S., Geffen, L., and McKee, M. (2020). Bearing the brunt of covid-19: older people in low and middle income countries. BMJ 2020; 368 doi: https://doi.org/10.1136/bmj.m1052 
  • NHS Information Services Division (2017). Care Home Census for Adults in Scotland. Available at: https://www.isdscotland.org/Health-Topics/Health-and-Social-Community-Care/Publications/2018-09-11/2018-09-11-CHCensus-Report.pdf; accessed: 27 March 2020.
  • Pickard, L. (2015). A growing care gap? The supply of unpaid care for older people by their adult children in England to 2032. Ageing & Society 35, 96-123.
  • Port, C. L., Zimmerman, S., Williams, C. S., Dobbs, D., Preisser, J. S., & Williams, S. W. (2005). Families filling the gap: Comparing family involvement for assisted living and nursing home residents with dementia. The Gerontologist, 45(suppl_1), 87-95.
  • Sjöberg, M., Beck, I., Rasmussen, B.H., Edberg, A.-K. (2018). Being disconnected from life: meanings of existential loneliness as narrated by frail older people. Aging & Mental Health 22, 1357-1364.
  • Sullivan, M.P., Victor, C.R., Thomas, M., Poland, F., Milne, A. (2016). Understanding and alleviating loneliness in later life: perspectives of older people. Quality in Ageing and Older Adults 17.
  • Victor, C.R. (2012). Loneliness in care homes: a neglected area of research? Aging health 8, 637-646.Watson, J. (2016). Face to Face: Relating to people with dementia until the end of life in care homes, CRFR Briefing 86. Centre for Research on Families and Relationships, https://www.crfr.ac.uk/publications/research-briefings/

Project partners

Chief Scientists Office
The University of Edinburgh
University of Strathclyde
University of the west of Scotland
Iriss
CRFR