New study: The experience of family carers and keeping in regular contact with loved ones who permanently live in a care home during the COVID-19 Pandemic, a UK perspective

Dr Kathryn Hinsliff-Smith (Senior Research Fellow at De Montfort University, Leicester)

Aim/Objectives: The aim of this COVID-19 related study, which started in early May, is to explore the experiences for family who are unable to visit their relatives who permanently reside in a care home. This relates to ‘usual’ family visits as well as compassion visits that may be made at a time when EOL procedures would be followed. We want to understand current interactions by family and their relatives living within a care home during the period of a UK wide lock-down.and is leading a UK wide study about care homes, family carers and residents.

Why this study?

In the UK around 450,000 people live in long term residential and nursing homes (Laing & Buisson, 2010). This is a bed base three times that of the acute hospital sector in England (Ewbank et al., 2020). Most are aged over 80, many with a cognitive impairment including dementia related conditions as well as multiple co-morbidities (Gordon et al., 2014). The UK Alzheimer’s Society (2016) recently estimated that 70% of care home residents live with dementia or severe memory problems and 1 in 14 people over the age of 65 (7%) and 1 in 6 people over the age of 80 have dementia (17%) (Alzheimer’s Research UK, 2019; Alzheimer’s Society, 2019b).

In the UK there are over 19,000 independently owned care homes.  Care home managers, clinical staff and health care assistants all care for and interact with residents to provide the care to meet resident needs.   We know that quality of care is dependent on the quality of interactions including having contact with family and friends. We know human interactions can aid the fostering of greater understanding about an individual, provide connections and deliver an improved experience for recipient and carer (Care Quality Commission, 2011, Department of Health, 2011).

The COVID-19 pandemic, a highly transmittable and pathogenic viral infection caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), emerged in Wuhan, China, and spread around the world (ECDC 2020).  In the UK on the 23rd March, 2020 the UK population were informed to “stay at home, protect the NHS, save lives” (Gov. UK 2020a) this included any visits by family to loved ones living in a care home including residential care home settings. However, limiting personal contacts and interactions with care home residents and their family may cause undue distress to residents (BGS, 2020), but how does this restriction of visiting relatives have on family members and how are they adjusting to this new norm? 

This is important topic to explore since evidence suggests that during this outbreak a large number of care home residents will unfortunately die as a direct result of either contracting the virus or through natural causes. Cumulative up to 7th June, 2020 16,329 cases were reported as suspected or confirmed cases of COVID-19 in the care home sector (Gov.UK 2020). In addition, there are also residents who will have underlying health conditions that may result in a need for end of life care (EOL). We currently believe that this topic of family connection and visits to love ones living in a care home as part of normal visits, as previously advocated by the Care Quality Commission (CQC, 2016) or at the stage of EOL, to be a neglected aspect of the COVID-19 virus and the wider care home sector evidence at this time.

Would you like to take part?

Our study, which commenced in early May 2020, is looking to recruit family carers who have a relative permanently living in a UK care home. More information about the study and how to take part is available here.

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