Negotiating pace, focus and identities: Patient/public involvement/engagement in a palliative care study.

Patient and public involvement and engagement (PPIE) is an increasingly important component of research conduct to enhance processes and potential for impact, yet is rarely critically interrogated. This paper draws on Foucauldian analysis to highlight the disciplinary powers and tensions arising in PPIE. The paper draws on a nested evaluation interview study with three PPIE members and eight academics, who had been involved in an implementation science study focused on palliative care. PPIE members were involved in the whole study and are co-authors of this article. Through shared values and commitments to the study, a team culture of equality was developed. Yet while power was dispersed and taken-up by all team members, in so doing a self-governance approach within the team was developed. The pace and focus of discussions was at times more subjugating than co-production. Identities and positions were porous; the simplistic division of 'academic' and 'PPIE' did not stand up to scrutiny, with an increasing blurring of boundaries as people's experiences and insights changed over time. Continual, subtle, negotiations of roles, inputs and identities were manifest throughout the project. PPIE in research involves subtle, complex and ongoing disciplinary practices enacted by all members of the team.

Practicalities of promoting practice-based learning in end of life care for care home staff: Lessons from "online" supportive conversations and reflection sessions.

INTRODUCTION: Deaths in care homes and "at home" are anticipated to account for a third of UK deaths by 2040. Currently, palliative and end of life care are not part of statutory training in care homes. Reflective practice is a tool that can facilitate practice-based learning and support. Following a feasibly study to test "online" supportive conversations and reflection sessions (OSCaRS) to support care home staff in relation to death/dying during the first months of the COVID pandemic, a one-year practice development follow-up project was undertaken with the aim to create a team of NHS/specialist palliative care (SPC)-based facilitators to lead and support OSCaRS provision in up to 50 care homes in one region in Scotland-the focus of this paper. METHODS: Forty care home managers attended an on-line session explaining the project, with a similar session held for 19 NHS/SPC-based nurses external to care homes. Those interested in facilitating OSCaRS then attended three education sessions. DATA COLLECTED: records of all activities; reflective notes on OSCaRS organised/delivered; a summary of each OSCaRS reflection/learning points; final interviews with NHS/SPC trainee facilitators. RESULTS: A total of 19 NHS/SPC facilitators delivered one or more OSCaRS in 22 participating care homes. However, as of January 2022 only six trained facilitators remained active. Out of the 158 OSCaRS arranged, 96 took place with a total of 262 staff attending. There were three important aspects that emerged: the role, remit, and resources of NHS/SPC supporting OSCaRS; requirements within care homes for establishing OSCaRS; and, the practice-based learning topics discussed at each OSCaRS. CONCLUSION: Attempts to establish a team of NHS/SPC facilitators to lead OSCaRS highlights that end of life care education in care homes does not clearly fall within the contractual remit of either group or risks being missed due to more pressing priorities.

The impact of need-based care on formal caregivers' wellbeing in nursing homes: A cluster randomized controlled trial.

BACKGROUND: Need-based care is a structured and standardized model that supports formal caregivers in nursing homes in delivering person-centered care by responding with tailored non-pharmacological interventions on residents' unmet needs as well as having positive effects on behavioral and psychological symptoms on residents with dementia. However, limited resources as well as the shortage of caregivers in nursing homes make the implementation of need-based care challenging, especially when it comes to finding ways to spend more time with residents. The aim of this study is to evaluate the impact of the implementation of need-based care in nursing homes on formal caregivers' wellbeing. METHODS: A three-arm cluster randomized controlled trial was set up in 24 Belgian nursing homes: formal caregivers in the 'need-based care' group (intervention; n = 195) spent time twice a week with residents who had behavioral and psychological symptoms according to the principles of need-based care while formal caregivers in the 'time' group (n = 257) filled in the way they spent time twice a week; a third group delivered standard care (n = 299). An implementation strategy was built upon the Implementation Quality Framework and used in the 'need-based care group'. A total of 741 formal caregivers completed the digital questionnaire at one or more of the five time points (every nine weeks) between November 2021 and July 2022; they rated their sense of competence in dementia care, level of burnout, and, level of engagement. Moments of time were registered in a printed registration book. RESULTS: Only formal caregivers from the 'need-based care' group experienced a higher sense of competence in dementia care at time points three (p = 0.010) and four (p = 0.001) compared with baseline with an increase of respectively 1.5 (95 % confidence interval [0.25, 2.84]) and 2.4 (95 % confidence interval [0.77, 4.04]) points. No differences in scores on burnout and engagement were found. CONCLUSION: Despite challenging workforce circumstances in nursing homes, caregivers in the need-based care group as well as in the time group were able to spend time twice a week with residents with behavioral and psychological symptoms. No negative effects were found on formal caregivers' wellbeing after the implementation of need-based care in nursing homes. However, it requires strong leadership and the use of well-considered implementation strategies including reflective practice. TRIAL REGISTRY: Trial registration number ISRCTN56768265 (10/08/2023).

Effect of need-based care on behavioural and psychological symptoms in residents with dementia and formal caregivers' distress in nursing homes: a three-arm cluster randomized controlled trial.

PURPOSE: To evaluate to what extent the standardized concept of need-based care on Behavioural and Psychological Symptoms of Dementia (BPSD), and formal caregiver distress, is superior when compared to spending more time or standard care with residents with BPSD. METHODS: A longitudinal cluster randomized controlled study in 23 nursing homes in Belgium with 3 parallel groups was set up. A total of 481 residents with dementia participated. Formal caregivers in the need-based care group treated residents who displayed agitated or aggressive behaviour with a non-pharmacological intervention, tailored to unmet needs, twice a week with re-evaluation every 8 weeks. In the time group, formal caregivers spent 'extra time'. In the standard care group, it was 'care as usual'. Outcomes were measured at four different time points with the Doloplus-2 (to assess pain behaviour), Cohen-Mansfield Agitation Inventory (CMAI) for agitation, the Neuropsychiatric Inventory (NPI-NH) for BPSD and formal caregivers' distress. RESULTS: Need-based interventions had a significant effect on residents' levels of pain behaviour. In the need-based care group, scores on overall BPSD (agitation and aggression, depression, euphoria, irritability, sleep and night-time behaviour) improved significantly from baseline when compared to other timepoints. No significant different interactions over time were found between all three groups for categorized versions of NPI scores (ever versus never). CONCLUSION: Need-based care reduced the level of BPSD in residents with dementia as well as formal caregivers' distress. The study supports the importance of tailored non-pharmacological interventions in the residential care for people with dementia. TRIAL REGISTRY: Trial registration number B300201942084 (18/11/2019).

Developing a care home data platform in Scotland: a mixed methods study of data routinely collected in care homes.

BACKGROUND: care homes collect extensive data about their residents, and their care, in multiple ways, for multiple purposes. We aimed to (i) identify what data are routinely collected and (ii) collate care home managers' views and experiences of collecting, using and sharing data. METHODS: we examined data collected in six care homes across Lothian, Scotland. We extracted the meta-data, cross-referenced definitions and assessed the degree of harmonisation between care homes and with data sets currently in use in Scotland and internationally. We interviewed care home managers about their views and experiences of collecting, using and sharing data. RESULTS: we identified 15 core data items used routinely, with significant heterogeneity in tools and assessments used, and very limited harmonisation. Two overarching themes were identified of importance to the development of a care home data platform: (i) the rationale for collecting data, including to (a) support person-centred care, (b) share information, (c) manage workforce and budget and (d) provide evidence to statutory bodies and (ii) the reality of collecting data, including data accuracy, and understanding data in context. DISCUSSION: considerable information is collected by care home staff, in varied formats, with heterogeneity of scope and definition, for range of reasons. We discuss the issues that should be considered to ensure that individual resident-level form the strong foundations for any data platform for care homes, which must also include, robust infrastructure and clear interoperability, with appropriate governance. It must be co-produced by academics, policy makers and sector representatives, with residents, their families and care staff.

Supporting care home residents in the last year of life through 'Needs Rounds': Development of a pre-implementation programme theory through a rapid collaborative online approach.

Background: Realist evaluation aims to address the knowledge to practice gap by explaining how an intervention is expected to work, as well as what is likely to impact upon the success of its implementation, by developing programme theories that link contexts, mechanisms and outcomes. Co-production approaches to the development of programme theories offer substantial benefits in addressing power relations, including and valuing different types of knowledge, and promoting buy-in from stakeholders while navigating the complex social systems in which innovations are embedded. This paper describes the co-production of an initial programme theory of how an evidence based intervention developed in Australia - called 'Palliative Care Needs Rounds' - might work in England and Scotland to support care home residents approaching their end of life. Methods: Using realist evaluation and iPARIHS (integrated Promoting Action on Research Implementation in Health Services) we sought to determine how contexts and mechanisms of change might shape implementation outcomes. Pre-intervention online interviews (n = 28) were conducted (February-April 2021), followed by four co-design online workshops with 43 participants (April-June 2021). The online interviews and workshops included a range of stakeholders, including care home staff, specialist palliative care staff, paramedics, general practitioners, and relatives of people living in care homes. Results: This methodology paper reports developments in realist evaluation and co-production methodologies, and how they were used to develop context, mechanisms, outcomes (CMOs) configurations, and chains of inference. The initial (pre-intervention) programme theory is used to illustrate this process. Two developments to iPARIHS are described. First, involving stakeholders in the collaborative co-design workshops created opportunities to commence facilitation. Second, we describe developing iPARIHS' innovation component, to include novel stakeholder interpretations, perceptions and anticipated use of the intervention as they participated in workshop discussions. Conclusions: This rapid and robust co-production methodology draws on interactive collaborative research practices (interviews, workshop discussions of data, illustrative vignettes and visual methods). These innovative and engaging methods can be packaged for online processes to develop, describe and interrogate the CMOs in order to co-produce a programme theory. These approaches also commence facilitation and innovation, and can be adopted in other implementation science and realist studies.

Pain assessment and management in care homes: understanding the context through a scoping review.

BACKGROUND: Internationally, 2-5% of people live in residential or nursing homes, many with multi-morbidities, including severe cognitive impairment. Pain is frequently considered an expected part of old age and morbidity, and may often be either under-reported by care home residents, or go unrecognized by care staff. We conducted a systematic scoping review to explore the complexity of pain recognition, assessment and treatment for residents living in care homes, and to understand the contexts that might influence its management. METHODS: Scoping review using the methodological framework of Levac and colleagues. Articles were included if they examined pain assessment and/or management, for care or nursing home residents. We searched Medline, CINAHL, ASSIA, PsycINFO, EMBASE, Cochrane Library, and Google Scholar; reference lists were also screened, and website searches carried out of key organisations. Conversations with 16 local care home managers were included to gain an understanding of their perspective. RESULTS: Inclusion criteria were met by 109 studies. Three overarching themes were identified: Staff factors and beliefs - in relation to pain assessment and management (e.g. experience, qualifications) and beliefs and perceptions relating to pain. Pain assessment - including use of pain assessment tools and assessment/management for residents with cognitive impairment. Interventions - including efficacy/effects (pharmaceutical/non pharmaceutical), and pain training interventions and their outcomes. Overall findings from the review indicated a lack of training and staff confidence in relation to pain assessment and management. This was particularly the case for residents with dementia. CONCLUSIONS: Further training and detailed guidelines for the appropriate assessment and treatment of pain are required by care home staff. Professionals external to the care home environment need to be aware of the issues facing care homes staff and residents in order to target their input in the most appropriate way.

Palliative and end-of-life care in care homes: protocol for codesigning and implementing an appropriate scalable model of Needs Rounds in the UK.

INTRODUCTION: Palliative and end-of-life care in care homes is often inadequate, despite high morbidity and mortality. Residents can experience uncontrolled symptoms, poor quality deaths and avoidable hospitalisations. Care home staff can feel unsupported to look after residents at the end of life. Approaches for improving end-of-life care are often education-focused, do not triage residents and rarely integrate clinical care. This study will adapt an evidence-based approach from Australia for the UK context called 'Palliative Care Needs Rounds' (Needs Rounds). Needs Rounds combine triaging, anticipatory person-centred planning, case-based education and case-conferencing; the Australian studies found that Needs Rounds reduce length of stay in hospital, and improve dying in preferred place of care, and symptoms at the end of life. METHODS AND ANALYSIS: This implementation science study will codesign and implement a scalable UK model of Needs Rounds. The Integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework will be used to identify contextual barriers and use facilitation to enable successful implementation. Six palliative care teams, working with 4-6 care homes each, will engage in two phases. In phase 1 (February 2021), stakeholder interviews (n=40) will be used to develop a programme theory to meet the primary outcome of identifying what works, for whom in what circumstances for UK Needs Rounds. Subsequently a workshop to codesign UK Needs Rounds will be run. Phase 2 (July 2021) will implement the UK model for a year. Prospective data collection will focus on secondary outcomes regarding hospitalisations, residents' quality of death and care home staff capability of adopting a palliative approach. ETHICS AND DISSEMINATION: Frenchay Research Ethics Committee (287447) approved the study. Findings will be disseminated to policy-makers, care home/palliative care practitioners, residents/relatives and academic audiences. An implementation package will be developed for practitioners to provide the tools and resources required to adopt UK Needs Rounds. REGISTRATION DETAILS: Registration details: ISRCTN15863801.

Care home residents who die in hospital: exploring factors, processes and experiences.

BACKGROUND: Care home residents are increasingly frail with complex health and social care needs. Their transfer to hospital at the end-of-life can be associated with unwanted interventions and distress. However, hospitals do enable provision of care that some residents wish to receive. We aimed to explore the factors that influence hospital admission of care home residents who then died in hospital. METHODS: This study combined in-depth case note review of care home residents dying in two Scottish teaching hospitals during a 6-month period and semi-structured interviews with a purposive sample of 26 care home staff and two relatives. RESULTS: During the 6-month period, 109 care home residents died in hospital. Most admissions occurred out-of-hours (69%) and most were due to a sudden event or acute change in clinical condition (72%). Length of stay in hospital before death was short, with 42% of deaths occurring within 3 days. Anticipatory Care Planning (ACP) regarding hospital admission was documented in 44%.Care home staff wanted to care for residents who were dying; however, uncertain trajectories of decline, acute events, challenges of ACP, relationship with family and lack of external support impeded this. CONCLUSIONS: Managing acute changes on the background of uncertain trajectories is challenging in care homes. Enhanced support is required to improve and embed ACP in care homes and to provide rapid, 24 hours-a-day support to manage difficult symptoms and acute changes.

A qualitative study of family caregivers' coping strategies of looking after people with dementia in China.

BACKGROUND AND AIMS: Globally, two thirds of people with dementia are cared for by their families or friends. Family caregivers' coping strategies of managing the caregiving burden of dementia have been studied widely in western literature. However, few attempts have been made to explore the experience of family caregivers' coping strategies in China. The aim of this study was to explore the family caregivers' coping strategies when caring for people with dementia in one city in the province of Shandong, China. METHODS: Fourteen family caregivers were individually interviewed, and interpretative phenomenological analysis was used to identify themes within different family members. RESULTS: Four key themes were found: (a) being filial; (b) changing self and self-care; (c) seeking help; and (d) having hope and continuing life. CONCLUSION: The study illustrates the different strategies developed by family members in order to cope with their new roles when caring for a relative who has dementia. It shows that cultural belief of filial piety plays a large role across these various coping strategies. It highlights how responsibility has been maintained and influenced by the specific sociocultural context. The results provide a useful foundation for developing interventions that support family caregivers cope with the burden of caring in this population.

Evaluation of a Palliative Care Program for Nursing Homes in 7 Countries: The PACE Cluster-Randomized Clinical Trial.

Importance: High-quality evidence on how to improve palliative care in nursing homes is lacking. Objective: To investigate the effect of the Palliative Care for Older People (PACE) Steps to Success Program on resident and staff outcomes. Design, Setting, and Participants: A cluster-randomized clinical trial (2015-2017) in 78 nursing homes in 7 countries comparing PACE Steps to Success Program (intervention) with usual care (control). Randomization was stratified by country and median number of beds in each country in a 1:1 ratio. Interventions: The PACE Steps to Success Program is a multicomponent intervention to integrate basic nonspecialist palliative care in nursing homes. Using a train-the-trainer approach, an external trainer supports staff in nursing homes to introduce a palliative care approach over the course of 1 year following a 6-steps program. The steps are (1) advance care planning with residents and family, (2) assessment, care planning, and review of needs and problems, (3) coordination of care via monthly multidisciplinary review meetings, (4) delivery of high-quality care focusing on pain and depression, (5) care in the last days of life, and (6) care after death. Main Outcomes and Measures: The primary resident outcome was comfort in the last week of life measured after death by staff using the End-of-Life in Dementia Scale Comfort Assessment While Dying (EOLD-CAD; range, 14-42). The primary staff outcome was knowledge of palliative care reported by staff using the Palliative Care Survey (PCS; range, 0-1). Results: Concerning deceased residents, we collected 551 of 610 questionnaires from staff at baseline and 984 of 1178 postintervention in 37 intervention and 36 control homes. Mean (SD) age at time of death ranged between 85.22 (9.13) and 85.91 (8.57) years, and between 60.6% (160/264) and 70.6% (190/269) of residents were women across the different groups. Residents' comfort in the last week of life did not differ between intervention and control groups (baseline-adjusted mean difference, -0.55; 95% CI, -1.71 to 0.61; P = .35). Concerning staff, we collected 2680 of 3638 questionnaires at baseline and 2437 of 3510 postintervention in 37 intervention and 38 control homes. Mean (SD) age of staff ranged between 42.3 (12.1) and 44.1 (11.7) years, and between 87.2% (1092/1253) and 89% (1224/1375) of staff were women across the different groups. Staff in the intervention group had statistically significantly better knowledge of palliative care than staff in the control group, but the clinical difference was minimal (baseline-adjusted mean difference, 0.04; 95% CI, 0.02-0.05; P < .001). Data analyses began on April 20, 2018. Conclusions and Relevance: Residents' comfort in the last week of life did not improve after introducing the PACE Steps to Success Program. Improvements in staff knowledge of palliative care were clinically not important. Trial Registration: ISRCTN Identifier: ISRCTN14741671.

Evaluating the implementation of the PACE Steps to Success Programme in long-term care facilities in seven countries according to the RE-AIM framework.

BACKGROUND: The PACE 'Steps to Success' programme is a complex educational and development intervention for staff to improve palliative care in long-term care facilities (LTCFs). In a cluster randomized controlled trial, this programme has been implemented in 37 LTCFs in 7 European countries. Alongside an effectiveness study, a process evaluation study was conducted. This paper reports on the results of this process evaluation, of which the aim was to provide a more detailed understanding of the implementation of the PACE Programme across and within countries. METHODS: The process evaluation followed the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework and involved various measures and tools, including diaries for country trainers, evaluation questionnaires for care staff, attendance lists and interviews (online and face-to-face, individual and in groups) with country trainers, managers, PACE coordinators and other staff members. Based on key elements of the PACE Programme, a priori criteria for a high, medium and low level of the RE-AIM components Reach, Adoption, Implementation and intention to Maintenance were defined. Qualitative data on factors affecting each RE-AIM component gathered in the online discussion groups and interviews were analysed according to the principles of thematic analysis. RESULTS: The performance of the PACE Programme on the RE-AIM components was highly variable within and across countries, with a high or medium score for in total 28 (out of 37) LTCFs on Reach, for 26 LTCFs on Adoption, for 35 LTCFs on Implementation and for 34 LTCFs on intention to Maintenance. The factors affecting performance on the different RE-AIM components could be classified into three major categories: (1) the PACE Programme itself and its way of delivery, (2) people working with the PACE Programme and (3) contextual factors. Several country-specific challenges in implementing the PACE Programme were identified. CONCLUSIONS: The implementation of the PACE Programme was feasible but leaves room for improvement. Our analysis helps to better understand the optimal levels of training and facilitation and provides recommendations to improve implementation in the LTC setting. The results of the process evaluation will be used to further adapt and improve the PACE Programme prior to its further dissemination. TRIAL REGISTRATION: The PACE study was registered at www.isrctn.com-ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) July 30, 2015.

A framework for cross-cultural development and implementation of complex interventions to improve palliative care in nursing homes: the PACE steps to success programme.

BACKGROUND: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar. METHODS: The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support. RESULTS: Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1-3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and facilitated it via in-house PACE coordinators. Support was cascaded from country trainers to staff implementing the intervention. CONCLUSIONS: There is little guidance on how to adapt complex interventions developed in one country and language to international contexts. This framework for cross-cultural adaptation and implementation of a complex educational and development intervention may be useful to others seeking to transfer quality improvement initiatives in other contexts.

Integrating palliative care in long-term care facilities across Europe (PACE): protocol of a cluster randomized controlled trial of the 'PACE Steps to Success' intervention in seven countries.

BACKGROUND: Several studies have highlighted the need for improvement in palliative care delivered to older people long-term care facilities. However, the available evidence on how to improve palliative care in these settings is weak, especially in Europe. We describe the protocol of the PACE trial aimed to 1) evaluate the effectiveness and cost-effectiveness of the 'PACE Steps to Success' palliative care intervention for older people in long-term care facilities, and 2) assess the implementation process and identify facilitators and barriers for implementation in different countries. METHODS: We will conduct a multi-facility cluster randomised controlled trial in Belgium, Finland, Italy, the Netherlands, Poland, Switzerland and England. In total, 72 facilities will be randomized to receive the 'Pace Steps to Success intervention' or to 'care as usual'. Primary outcome at resident level: quality of dying (CAD-EOLD); and at staff level: staff knowledge of palliative care (Palliative Care Survey). SECONDARY OUTCOMES: resident's quality of end-of-life care, staff self-efficacy, self-perceived educational needs, and opinions on palliative care. Economic outcomes: direct costs and quality-adjusted life years (QALYs). Measurements are performed at baseline and after the intervention. For the resident-level outcomes, facilities report all deaths of residents in and outside the facilities over a previous four-month period and structured questionnaires are sent to (1) the administrator, (2) staff member most involved in care (3) treating general practitioner, and (4) a relative. For the staff-level outcomes, all staff who are working in the facilities are asked to complete a structured questionnaire. A process evaluation will run alongside the effectiveness evaluation in the intervention group using the RE-AIM framework. DISCUSSION: The lack of high quality trials in palliative care has been recognized throughout the field of palliative care research. This cross-national cluster RCT designed to evaluate the impact of the palliative care intervention for long-term care facilities 'PACE Steps to Success' in seven countries, will provide important evidence concerning the effectiveness as well as the preconditions for optimal implementation of palliative care in nursing homes, and this within different health care systems. TRIAL REGISTRATION: The study is registered at www.isrctn.com - ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) Registration date: July 30, 2015.

Family perceptions of care at the end of life in UK nursing care homes.

BACKGROUND: Over a fifth of the population of developed countries die in care homes. While studies are emerging on the outcomes of care in the last few weeks of life, few report on the experience as perceived by the family members. METHODS: As part of a wider study to improve the delivery of end-of-life care, bereaved relatives of residents who had died in a care home/hospital were sent the Family Perception of Care Scale questionnaire to evaluate their experience of care provision for their relative in the last month of life. The Family Perception of Care Scale questionnaire was posted to bereaved relatives, from 37 nursing care homes in south-east England, 3-6 months following the resident's death. The questionnaires were posted over a 14-month period from 1 October 2009 to 31 November 2010. RESULTS: A total of 869 questionnaires were posted, with a 42% response rate. A global question within the Family Perception of Care Scale looking at the overall satisfaction with the quality of end-of-life care (Q24) indicated that bereaved relatives were satisfied with the care provided. Qualitative responses from family members highlighted some excellent care, although issues in relation to medical input, professional teamwork, last days of life and spiritual care remain problematic. Results provide an important insight into care provision at the end of life within these care homes. CONCLUSION: While some issues can be addressed through education, relationships and value-based issues are likely to be more difficult to address in light of increasing pressure of healthcare support for UK care homes.

Implementing the Namaste Care Program for residents with advanced dementia: exploring the perceptions of families and staff in UK care homes.

BACKGROUND: Increasing numbers of older people with advanced dementia are cared for in care homes. No cure is available, so research focused on improving quality of life and quality of care for people with dementia is needed to support them to live and die well. The Namaste Care programme is a multi-dimensional care program with sensory, psycho-social and spiritual components intended to enhance quality of life and quality of care for people with advanced dementia. The aim of the study was to establish whether the Namaste Care program can be implemented in UK care homes; and what effect Namaste Care has on the quality of life of residents with advanced dementia, their families and staff. This article explores the qualitative findings of the study, reporting the effect of the programme on the families of people with advanced dementia and care home staff, and presenting their perceptions of change in care. METHODS: An organisational action research methodology was used. Focus groups and interviews were undertaken pre/post implementation of the Namaste Care program. The researcher kept a reflective diary recording data on the process of change. A comments book was available to staff and relatives in each care home. Data was analysed thematically within each care home and then across all care homes. RESULTS: Six care homes were recruited in south London: one withdrew before the study was underway. Of the five remaining care homes, four achieved a full Namaste Care program. One care home did not achieve the full program during the study, and another discontinued Namaste Care when the study ended. Every home experienced management disruption during the study. Namaste Care challenged normal routinised care for older people with advanced dementia. The characteristics of care uncovered before Namaste was implemented were: chaos and confusion, rushing around, lack of trust, and rewarding care. After the programme was implemented these perceptions were transformed, and themes of calmness, reaching out to each other, seeing the person, and, enhanced well-being, emerged. CONCLUSIONS: Namaste Care can enrich the quality of life of older people with advanced dementia in care homes. The program was welcomed by care home staff and families, and was achieved with only modest expenditure and no change in staffing levels. The positive impact on residents quality of life influenced the well-being of family carers. Care staff found the changes in care enjoyable and rewarding. Namaste Care was valued for the benefits seen in residents; the improvement in relationships; and the shift towards a person-centred, relationship-based culture of care brought about by introducing the program. Namaste Care deserves further exploration and investigation including a randomised controlled trial.