Culture, consent, costs and care homes: Enabling older people with dementia to participate in research

Abstract

MethodThis paper focuses on the methods used to recruit people with dementia to a longitudinal study that employed a mixed-method design to track events and care that older people with dementia experienced over two years in six care homes. A staged approach to recruitment was adopted involving separate meetings with staff, residents and relatives. Individual consent was secured with residents with dementia who could consent in the moment and for those without capacity, through mail and follow-up telephone contact with consultees. Data were collected on the frequency of meetings, issues raised by staff, consultees and people with dementia as well as the overall time taken to complete recruitment. ResultsOver five months, 133 older people with dementia were recruited (62% of sampling frame). The recruitment process was supported or hindered by the number of individuals and organisations that needed to be consulted, the care home culture, staff understanding of how people with dementia can be involved in research, and how they interpreted their role as mediators, protectors and gatekeepers. ConclusionsCare homes are isolated communities of care. To achieve the research objectives researchers in the initial stages need to consider the philosophical underpinnings of individual care homes, and the politics of hierarchy both within the care home and between it, and other health professionals.Goodman et al. homes, NHS and Local Authority staff) on good research practice in care home settings.

Probiotics for Antibiotic-Associated Diarrhoea (PAAD): a prospective observational study of antibiotic-associated diarrhoea (including Clostridium difficile-associated diarrhoea) in care homes

“…This group has been shown elsewhere to be representative of residents living in care homes across the UK. 79,80 The rate of C. difficile infection in England was approximately 366.9 per 100,000 in 2011 for people aged over 65 years, while the same rate was approximately 42.5 for those under 65 years of age. 7 This indicates that C. difficile is still an issue of concern for the specific age group, even though there was a 53% decrease in overall numbers of reported cases between 2008 and 2011.…”

“…79,80 Residents were predominantly aged 80 years and above, frail and at high nutritional risk. Levels of nutritional risk were similar to levels found in care homes in the 2011 Nutritional Screening Survey.…”

Exercise for depression in care home residents: a randomised controlled trial with cost-effectiveness analysis (OPERA)

“…100 In effect this was the standard used by recruiting staff in OPERA as failure to remember information given to them 24 hours previously was not seen as a bar to consenting if the resident was able to understand the information and retain it during the discussion prior to signing the consent form.…”

“…The importance of care home managers and staff in the recruitment of participants to 7 research in care home settings has been noted previously. 100 Reasons for excluding access include the views of care home staff on the resident's capacity to consent, the resident's or their next of kin's (NOK's) physical frailty, and the value they place on their privacy. There is a difficult ethical balance to be struck by care home managers in protecting their residents' interests while not denying them the opportunity to participate in research if they wish.…”

“…Two UK studies that specified recruitment rates for care home residents through proxies or consultees reported levels of 61% and 41%, respectively. 100,108 In developing this study we identified several ethical issues:…”