“Most people lack capacity here”. The ethical and methodological challenges of conducting research in care homes for older adults

Recent figures suggest that in excess of 80% of care home residents have dementia or significant memory problems (Alzheimer’s Society, 2013), presenting researchers with significant challenges when designing and conducting research in these settings. Whilst not everyone included in this figure will necessary fall under the remit of the Mental Capacity Act, any research planning to take an inclusive approach will have to: (1) justify the inclusion of people who might lack capacity to give their own consent and (2) address the ethical and methodological challenges that this presents. This paper reflects on our own experiences of conducting research in care homes for older people and reports on the challenges we have faced over the last year, as well as the strategies we have adopted to overcome them. We begin by considering the frequently used term “they lack capacity” and relate this back to the Mental Capacity Act and how it is implemented by Research Ethics Committees. After considering the ethical issues, we move on to discuss the practicalities of complying with the requirements of the Act in a care home environment. We share our own experiences of involving ‘consultees’ and discuss the burden this places on care home staff and the implications this has for the design of future research

Using ASCOT to inform care practice

The Adult Social Care Outcomes toolkit (ASCOT) began as a set of research instruments to measure the impact and value of social care interventions by concentrating upon the social care related quality of life of individuals who use social care interventions. This presentation explores the potential to use the ASCOT tools not just to measure social care related quality of life, but to inform improvements in care practice. It focuses primarily upon the care homes version of ASCOT (CH3) which uses mixed methods to measure care home residents’ social care related quality of life. These mixed methods include interviews with residents and staffs as well as detailed observations which provide rich data upon the ‘lived experience’ of residents. It is this very rich data that, we argue, allows the care homes version to have the greatest potential to inform and improve care practice. The presentation also considers how the other versions of ASCOT, namely a structured interview and a self-completion questionnaire, may also feed into informing and improving care practice

Living in a care home for older adults: the family members' experience

Moving into a care home is a life changing event, not just for the resident but also for the family member who may have previously acted as carer. This paper looks at focus groups that explored their experiences of moving a relative into a care home: their feelings during the process; their opinion of the quality of care that their relative receives; and factors they viewed as crucial for ensuring a good quality of life for their relative. These focus groups formed part of a wider study conducted by the Personal Social Services Research Unit (PSSRU) on the quality of life of residents in care homes for older adults. Two rounds of focus groups were held in each participating care home in order to gain an understanding of the family members’ experiences. The first round gave family members the opportunity to discuss any issues arising from the care that their relative was receiving, or concerns about the home itself. It also enabled them to debate what they felt constitutes a good quality of life for a resident of a care home. The second round enabled deeper exploration of the key themes that arose from the first round. This paper will discuss these themes, while also reflecting upon the practical issues arising from discussion of such an emotionally charged topic

Can Feedback to care home staff help improve residents' quality of life?

This paper presents the results of a feasibility study conducted in four care homes for older people in England. The aim of the study was to give care home staff feedback about residents’ social care-related quality of life (SCRQoL) and explore the feasibility of conducting a cluster-randomised control trial of the impact of the feedback in the future. In evaluating feasibility, we examine the acceptability of the data collection to those living and working in the homes and discuss how care home staff responded to the feedback. SCRQoL, measured using the care homes version of the Adult Social Care Outcomes Toolkit (ASCOT), was collected at baseline and used to give outcomes-focused feedback to care homes staff. Three months after giving the feedback, researchers returned to repeat the data collection and interview managers about any changes they might have made following the feedback. Unfortunately, one home had to be excluded from the analysis due to a sudden change of ownership which was underway during the time two data collection. Whilst overall sample sizes are small (n=51 residents across three homes), attrition in the remaining three homes was unusually low - nobody withdrew from the study for any reason. The baseline and follow-up scores of 51 residents across the remaining three homes are presented and discussed. We end by considering the challenges of delivering researcher-led interventions in care homes and discuss alternative study designs for future research