Care planning for quality of life in care homes: a circle of care approach involving residents and their families.

Ann-Marie Towers, Reader in Social Care and ASCOT Programme lead, Centre for Health Services Studies (CHSS), University of Kent.

As the UK begins to open up after a third lock-down, quality of life is a topic high on many people’s agendas. We are looking forward to meeting up with friends and family, being able to resume hobbies and leisure activities, and feeling like we have more choice and control over our daily lives. One of the groups most adversely affected by COVID-19 has been care home residents. Not only have they been disproportionately impacted by the disease itself and struggled to understand or comply with the restrictions placed upon them, many have also not seen friends or family for the best part of a year. Whilst some care homes may have been able to mitigate against the negative impact of ‘lockdown’ by using technology to maintain social contact with friends and families, and nurturing meaningful relationships within the care home bubble, the true impact remains unknown. Families have described the grief and anguish of being ‘shut out’ of their loved-ones lives and the fear that their family member living in a care home feels abandoned. To really understand the impact of COVID-19 on residents’ wellbeing and the strategies and interventions that protected it during the pandemic, we need data. For quality of life data, in particular, however, this is sorely lacking.

Measuring the impact of social care

The Care Act states that a core aim of social care is to promote the wellbeing of users and their carers. It is surprising, therefore, that there is currently no systematic way of measuring or reporting care home residents’ quality of life. Although national outcomes frameworks include an indicator of care-related quality of life, this data is only routinely collected through a national user experience survey administered by local authorities, meaning it excludes self-funders and cannot be traced back to individual providers. Its format (a self-completion questionnaire) is also largely inaccessible to many care home residents who have high care needs. What is really needed is a systematic and reliable way of measuring care home residents’ quality of life that is sensitive to the impact of the care provided and used to inform care practice and benchmark outcomes.

The ASCOT

The Adult Social Care Outcomes Toolkit (ASCOT) is a measure of social care-related quality of life. It is used internationally in research and evaluations to measure the impact of social care on people’s quality of life. It is also the quality of life indicator in the national outcomes framework mentioned previously. ASCOT measures eight dimensions of quality of life, all of which are sensitive to social care interventions and services, including care homes. These dimensions include both fundamental (Food and drink, Safety, Accommodation cleanliness and comfort, personal cleanliness and comfort) and higher order (Control over daily life, Occupation, Social participation and Dignity) aspects of quality of life.

Building on work the ASCOT team have previously undertaken with a large care provider in Australia, we will be working with Elizabeth Finn Care Homes to pilot the use of ASCOT in care planning conversations here in the UK. This work is funded by the Social Care Theme in the Applied Research Collaboration Kent, Surrey and Sussex (ARC KSS) and will feed into the work being undertaken in the DACHA study to develop and test a Minimum Data Set (MDS) for care homes.

The ‘Circle of Care’ approach

The Circle of Care approach brings together the resident, their family member or informal carer, a member of the direct care team and a care coordinator (e.g. a clinical lead within the home). Together they talk through the ASCOT domains to find out what is going well in that aspect of the resident’s life and to identify any unmet needs. This can be particularly helpful when the resident’s physical or mental health needs mean he/she cannot always explain what they are feeling or what they would like. The conversation is used to inform a ‘rating’ of the resident’s current quality of life in each domain and identify goals/actions in a care plan to meet any unmet needs. By involving the family in this process, the Circle of Care work as a team for the best interests of the resident.

How can the data be used?

ASCOT data can be recorded in a digital care record for each resident. The individual domain ratings are used to calculate an overall score of the resident’s current social care-related quality of life. This data can be used by the provider to benchmark quality of life at an aggregate level and identify home-level or even provider-level trends/issues over time. As the data is also being used to inform a care plan, it also has the potential to directly inform practice and improve people’s lives.

The study

The study will provide us with some initial data on the effectiveness of the intervention (e.g. how well this approach can improve residents’ quality of life) and the implementation of the approach. We will find out whether using ASCOT in a Circle of Care approach is appropriate, acceptable, sustainable and most importantly, valued and adopted by the provider (and if not, why not).

Findings will feed into recommendations for the DACHA study and, if appropriate, lead to further funding for a national evaluation of the approach with more care home providers.

Study team: Ann-Marie Towers¹, Nick Smith², Dr Jolie Keemink³, Professor Julien Forder³.

¹ Centre for Health Services Studies (CHSS), University of Kent.

² Personal Social Services Research Unit (PSSRU), University of Kent.

³Applied Research Collaboration Kent, Surrey and Sussex, Personal Social Services Research Unit (PSSRU), University of Kent.

This research was funded by the National Institute for Health Research (NIHR)

Applied Research Collaboration Kent, Surrey, Sussex. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

 

DACHA Acknowledgement and Disclaimer

This blog is funded by the National Institute for Health Research (NIHR) Health Service Research and Delivery programme (HS&DR NIHR127234) and supported by the NIHR Applied Research Collaboration (ARC) East of England. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.