Research, recruitment and observational data collection in care homes : lessons from the PACE study

Objective: Care homes are a common place of death for older adults, especially those with complex health needs or dementia. Representative, internationally comparable data on care home facilities and their residents is needed to monitor health and wellbeing in this population. Identification and collection of data from care homes can be challenging and often underreported. This paper draws on the experiences of the PACE study, a cross sectional mortality follow back study conducted in six European countries. Results: Multiple challenges were encountered in creating a sampling framework and contacting, recruiting and retaining care homes in the PACE study. Recruiting a randomly identified, representative cohort from a stratified sampling framework was problematic, as was engaging with care homes to ensure high response rates. Variation in the funding of care homes across the six countries involved in the study may explain the additional challenges encountered in England. Awareness of the challenges encountered in England in implementing an international study in care homes can inform the design and implementation of future studies within care homes. Further discussion is needed to determine the barriers and facilitators to conducting research in care homes, and how this is shaped by the focus of the study

Comparing palliative care in care homes across Europe (PACE) : protocol of a cross-sectional study of deceased residents in 6 EU countries

Objectives: Although a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Cross-country representative comparative research hardly exists in this area. As part of a large EU-funded project, we aim to undertake representative comparative research in care homes in Europe, to describe and compare 6 countries in terms of (1) resident outcomes, quality and costs of palliative and end-of-life care; and (2) palliative care structures and staff knowledge and attitudes toward palliative care. We also aim to explore country, facility, staff, patient, and care characteristics related to better outcomes at resident level. Design and Methods: To obtain a representative nationwide sample, we will conduct a large-scale cross-sectional study of deceased residents in care homes in Belgium, Finland, Italy, the Netherlands, Poland, and the United Kingdom, using proportional stratified random sampling (taking into account region, facility type and bed capacity). In each country, all participating care homes retrospectively report all deaths of residents in and outside the facilities over the previous 3-month period. For each case, structured questionnaires, including validated instruments, are sent to (1) the administrator/manager, (2) staff member most involved in care, (3) treating physician (general practitioner or elderly care physician), and (4) a closely involved relative. It is estimated that, per country, 50 care homes are needed on average to obtain a minimum of 200 deceased residents. Collected data include clinical and socio-demographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at the facility level and country level. To obtain a representative view of staff knowledge and attitudes regarding palliative care, PACE will conduct a cross-sectional study of staff working in the participating care homes. Conclusion: Considering the growing challenges associated with aging in all European countries, there is an urgent need to build a robust international comparative evidence base that can inform the development of policies to target improved palliative care in care homes. By describing this research protocol, we hope to inform international research in care homes on how to perform representative end-of-life care research in these settings and better understand which systems are associated with better outcomes

The ‘regulated death’: a documentary analysis of the regulation and inspection of dying and death in English care homes for older people.

In England, processes of regulation and inspection have been established to ensure that older people living in long-term care settings receive quality care. This paper describes how dying and death in care homes for older people is regulated and inspected. A documentary analysis was undertaken of the standard that addresses dying and death in the 2001 Care Homes for Older People: National Minimum Standards. Present in the standard is a ‘good death’ template drawn from constructions of best practice in palliative care. The way in which this national standard is enacted in the inspection process is described using a content analysis of the inspection reports from 226 care homes for older people. These present a narrow focus on dying and death, one that emphasises the older person's wishes and the degree of adherence to policies and procedures concerned with the dying and death event. A regulated death attenuates the ‘good death’ template and reflects both the inspection process and capabilities of the residents of care homes. If the regulation and inspection process is to integrate dying with living, a broader conception and regime of inspection is required. Only then will end-of-life care be provided that meets the diverse needs of older people who live in care homes

My Home Life: promoting quality of life in care homes

A new report from JRF outlines the findings from the My Home Life project. My Home Life is a collaborative initiative between Age UK, City University, the Joseph Rowntree Foundation and Dementia UK promoting quality of life in care homes. This study found: - positive relationships in care homes enable staff to listen to older people, gain insights into individual needs and facilitate greater voice, choice and control; - relationship-centred care is at the heart of many examples of best practice; - care home managers play a pivotal role in promoting relationships between older people, staff and relatives; - care home providers and statutory agencies should consider how their attitudes, practices and policies can create pressure and unnecessary paperwork which ultimately reduce the capacity of care homes to respond to the needs of older people; and - negative stereotypes of care homes have an impact on the confidence of staff and managers

‘’It just happens’. Care home residents’ experiences and expectations of accessing GP care.

Background: Care homes provide personal care and support for older people who can no longer be supported in the community. As part of a larger study of integrated working between the NHS and care homes we asked older people how they accessed health care services. Our aim was to understand how older people resident in care homes access health services using the Andersen model of health care access. Methods: Case studies were conducted in six care homes with different socio-economic characteristics, size and ownership in three study sites. Residents in all care homes with capacity to participate were eligible for the study. Interviews explored how residents accessed NHS professionals. The Andersen model of health seeking behaviour was our analytic framework. Findings: Thirty-five participants were interviewed with an average of 4 different conditions. Expectations of their health and the effectiveness of services to mitigate their problems were low. Enabling factors were the use of intermediaries (usually staff, but also relatives) to seek access. Residents expected that care home staff would monitor changes in their health and seek appropriate help unprompted. Conclusions: Care home residents may normalise their health care needs and frame services as unable to remediate these which may combine to disincline older care home residents to seek care. Care access was enabled using intermediaries -either staff or relatives-and the expectation that staff would proactively seek care when they observed new/changed needs. Residents may over-estimate the health-related knowledge of care home staff and their ability to initiate referrals to NHS professionals.Peer reviewedFinal Accepted Versio

Models for providing improved care in residential care homes: a thematic literature review

This Annotated Bibliography is one output from a review of the available research evidence to support improved care in residential care homes as the needs of older people intensify. Key findings The review identified extremely little published evidence on residential care homes; the research base is almost exclusively related to provision of care in nursing homes. Much of this research is from the US or other non-UK sources. Although it could be argued that some findings are generalisable to the UK residential care context, a systematic process is required to identify which. The literature often makes no distinction between nursing and residential homes; use of generic terms such as ‘care home’ should be avoided. There is considerable international debate in the quality improvement literature about the relationship between quality of care and quality of life in nursing and residential homes. Measures of social care, as well as clinical care, are needed. The centrality of the resident’s voice in measuring quality of life must be recognised. Ethnic minority residents are almost entirely absent from the quality improvement literature. Some clinical areas, internationally identified as key in terms of quality e.g. palliative care, are absent in the general nursing and residential home quality improvement literature. Others such as mental health (dementia and depression), diabetes, and nutrition are present but not fully integrated. Considerable evidence points to a need for better management of medication in nursing homes. Pharmacist medication reviews have shown a positive effect in nursing homes. It is unclear how this evidence might relate to residential care. There is evidence that medical cover for nursing and residential care home residents is suboptimal. Care could be restructured to give a greater scope for proactive and preventive interventions. General practitioners' workload in care homes may be considered against quality-of-care measures. There is US literature on the relationship between nurse staffing and nursing care home quality, with quality measured through clinical-based outcomes for residents and organisational outcomes. Conclusions are difficult to draw however due to inconsistencies in the evidencebase. Hospital admission and early discharge to nursing homes research may not be generalisable to residential care. The quality of inter-institutional transfers and ensuring patient safety across settings is important. To date research has not considered transfer from residential to nursing home care. The literature on district nurse and therapist roles in care homes includes very little research on residential care. Partnership working between district nurses and care home staff appears largely to occur by default at present. There is even less research evidence on therapist input to care homes. Set against the context outlined above, the international literature provides evidence of a number of approaches to care improvement, primarily in nursing homes. These include little discussion of cost-effectiveness other than in telecare. Research is needed in the UK on care improvement in residential homes

Effectiveness of an influenza vaccine programme for care home staff to prevent death, morbidity, and health service use among residents: cluster randomised controlled trial

Objective To determine whether vaccination of care home staff against influenza indirectly protects residents.Design Pair matched cluster randomised controlled trial.Setting Large private chain of UK care homes during the winters of 2003-4 and 2004-5.Participants Nursing home staff (n = 1703) and residents (n = 2604) in 44 care homes (22 intervention homes and 22 matched control homes).Interventions Vaccination offered to staff in intervention homes but not in control homes.Main outcome measures The primary outcome was all cause mortality of residents. Secondary outcomes were influenza-like illness and health service use in residents.Results In 2003-4 vaccine coverage in full time staff was 48.2% (407/884) in intervention homes and 5.9% (51/859) in control homes. In 2004-5 uptake rates were 43.2% (365/844) and 3.5% (28/800). National influenza rates were substaritially below average in 2004-5. In the 2003-4 period of influenza activity significant decreases were found in mortality of residents in intervention homes compared with control homes (rate difference - 5.0 per 100 residents, 95% confidence interval - 7.0 to - 2.0) and in influenza-like illness (P = 0.004), consultations with general practitioners for influenza-like illness (P = 0.008), and admissions to hospital with influenza-like illness (P = 0.009). No significant differences were found in 2004-5 or during periods of no influenza activity in 2003-4.Conclusions Vaccinating care home staff against influenza can prevent deaths, health service use, and influenza-like illness in residents during periods of moderate influenza activity

Partnerships for skills training in the care home sector

Aim: This paper describes an initiative in North East London that aimed to facilitate access to training for care-home staff by using a mobile skills-centre in the form of an adapted bus. Background: It has proved difficult to take a strategic approach to quality assurance in care homes and the first comprehensive national training strategy for the sector was not published until 2000. Staff value and benefit from training, but organizing the provision of education and training may be problematic, given resource constraints and staffing levels that make it difficult to release staff to go off-site. Method: Collaboration between the School of Community and Health Sciences, City University London; My Home Life, an initiative led by Help the Aged in collaboration with the National Care Forum and City University London; local care homes; local primary care trusts (PCTs); and the Centre for Excellence in Teaching and Learning at City University London and Queen Mary University of London. The project involved facilitation, training in the mobile skills-centre and evaluation through questionnaires. Findings: The project was successful at a number of different levels: providing training to care-home staff; fostering collaborative relationships between care homes and PCTs; providing a forum to enable a wider educational discussion of care-home needs; and stimulating the planning of future education programmes for care-home staff and of the provision in care homes of student nurse placements

A novel approach to reduce sedentary behaviour in care home residents: the GET READY study utilising service-learning and co-creation

The GET READY study aimed to integrate service-learning methodology into University degrees by offering students individual service opportunities with residential care homes, to co-create the best suited intervention to reduce the sedentary behaviour (SB) of residents throughout the day, with researchers, end-users, care staff, family members and policymakers. Eight workshops with care home residents and four workshops with care staff, relatives and policymakers, led by undergraduate students, were audiotaped, transcribed verbatim and analysed with inductive thematic analysis to understand views and preferences for sustainable strategies to reduce SB and increase movement of residents. Perspectives about SB and movement in care homes highlighted four subthemes. Assets for decreasing SB included three subthemes, and suggestions and strategies encapsulated four subthemes. There is a need to include end-users in decision making, and involve care staff and relatives in enhancing strategies to reduce SB among residents if we want sustainable changes in behaviour. A change in the culture at a policymaker and care staff's level could provide opportunities to open care homes to the community with regular activities outside the care home premises, and offer household chores and opportunities to give residents a role in maintaining their home environment

Explaining Differences in Remuneration Rates of Nursing Homes in Germany

Remuneration rates of German nursing homes are prospectively negotiated between long-term care insurance (LTCI) and social assistance on the one side and nursing homes on the other. They diff er considerably across regions while there is no evidence for substantial differences in care provision. This paper explains the differences in the remuneration rates by observable characteristics of the nursing home, its residents and its region with a special focus on the largest federal state North-Rhine-Westphalia, in which the most expensive nursing homes are located. We use data from the German Federal Statistical Office for 2005 on all nursing homes that off er full-time residential care for the elderly. We find that differences in remuneration rates can partly be explained by exogenous factors. Controls for residents, nursing homes, and district characteristics explain roughly 30% of the price difference; 40% can be ascribed to a regionally different kind of negotiation between nursing homes and LTCI. 30% of the raw price difference remains unexplained by observable characteristics.Nursing homes; determinants of remuneration rates; regional price differences