Operationalising the Recovery College model with people living with dementia: a realist review.

OBJECTIVES: Post-diagnostic support is a significant factor in facilitating personal recovery following a diagnosis of dementia, but access is often inconsistent and insufficient. Recovery Colleges offer peer-led, co-produced courses that can support people to have meaningful lives and have been adapted for use in the context of dementia. A realist review was conducted to understand the application and sustainability of Recovery College dementia courses. METHOD: An iterative, five-step process combined literature published to 2023 with knowledge from stakeholders with lived and professional experience of dementia involved with Recovery College dementia courses (PROSPERO registration CRD42021293687). RESULTS: Thirty-five documents and discussions with 19 stakeholders were used to build the initial programme theory comprising of 24 context-mechanism-outcome configurations. Reoccurring factors included: attending to aspects of co-production and course delivery to ensure they promoted inclusion and were not compromised by organisational pressures; how stigma impacted access to course opportunities; and embedding personal recovery principles throughout course development to be relevant for people living with dementia and those who support them. CONCLUSION: People struggling to reconcile their future alongside dementia need practical and emotional support to access and benefit from Recovery College dementia courses, ways to achieve this will be explored through a realist evaluation.

The use of constant observation with people with dementia in hospitals: a mixed-methods systematic review.

OBJECTIVES: Constant observation is used in hospitals with people with dementia to manage their safety. However, opportunities for proactive care are not consistently recognised or utilised. A systematic review of constant observation was conducted to understand measures of effectiveness and facilitators for person-centred approaches. METHOD: Electronic databases were searched between 2010 and 2022. Four reviewers completed screening, quality assessments and data extraction with 20% checked for consistency. Findings were presented through narrative synthesis (PROSPERO registration CRD42020221078). FINDINGS: Twenty-four studies were included. Non-registered staff without specific training were the main providers of constant observation. Assessments and processes clarifying the level of observation encouraged reviews that linked initiation and discontinuation to a patient's changing needs. Examples of person-centred care, derived from studies of volunteers or staff employed to provide activities, demonstrated meaningful engagement could reassure a person and improve their mood. Proactive approaches that anticipated distress were thought to reduce behaviours that carried a risk of harm but supporting evidence was lacking. CONCLUSION: Non-registered staff are limited by organisational efforts to reduce risk, leading to a focus on containment. Trained staff who are supported during constant observation can connect with patients, provide comfort and potentially reduce behaviours that carry a risk of harm.

A qualitative comparison of care home staff and palliative care specialists' experiences of providing end of life care to people living and dying with dementia in care homes in two countries: A focus group study.

BACKGROUND: Palliative care for people with dementia dying in care homes is an important aspect of long-term care. Whilst there is consensus about the principles of palliative care, less is known about how care home staff negotiate and influence decisions around end of life and how organisational context shapes that process. AIM: To explore the views and experiences of care home staff and palliative care specialists on end of life care in care homes and understand how care home settings affected palliative care provision in England and Australia. DESIGN/PARTICIPANTS: Eight focus groups in Australia and England with care home staff and palliative care specialists (n = 49). Reflexive thematic analysis was undertaken. FINDINGS: Australian participants reported collaboration between care home staff, visiting professions and family members though case conferences. English participants discussed resident-focussed involvement from specialists that was less formally organised. Negotiating roles and responsibilities in end of life care; the importance of relationships to overcome deficiencies in formal processes; and the legitimacy and authority of advance care planning at times of crisis were recurring themes. The organisation and embedding of end of life care in processes and practices of care homes differed; this closely linked to care home procedures in Australia but was less apparent in England. CONCLUSION: In both countries, partnership working was recognised and valued as key to effective palliative care. Work that enables care home staff to identify challenges with visiting professionals, such as agreeing priorities for care and negotiating their shared responsibilities, may lead to context-sensitive, sustainable solutions.

Optimal healthcare delivery to care homes in the UK: a realist evaluation of what supports effective working to improve healthcare outcomes.

INTRODUCTION: care home residents have high healthcare needs not fully met by prevailing healthcare models. This study explored how healthcare configuration influences resource use. METHODS: a realist evaluation using qualitative and quantitative data from case studies of three UK health and social care economies selected for differing patterns of healthcare delivery to care homes. Four homes per area (12 in total) were recruited. A total of 239 residents were followed for 12 months to record resource-use. Overall, 181 participants completed 116 interviews and 13 focus groups including residents, relatives, care home staff, community nurses, allied health professionals and General Practitioners. RESULTS: context-mechanism-outcome configurations were identified explaining what supported effective working between healthcare services and care home staff: (i) investment in care home-specific work that legitimises and values work with care homes; (ii) relational working which over time builds trust between practitioners; (iii) care which 'wraps around' care homes; and (iv) access to specialist care for older people with dementia. Resource use was similar between sites despite differing approaches to healthcare. There was greater utilisation of GP resource where this was specifically commissioned but no difference in costs between sites. CONCLUSION: activities generating opportunities and an interest in healthcare and care home staff working together are integral to optimal healthcare provision in care homes. Outcomes are likely to be better where: focus and activities legitimise ongoing contact between healthcare staff and care homes at an institutional level; link with a wider system of healthcare; and provide access to dementia-specific expertise.

Promoting independence, health and well-being for older people: a feasibility study of computer-aided health and social risk appraisal system in primary care.

BACKGROUND: With population ageing, research is needed into new low-cost, scalable methods of effective promotion of health and wellbeing for older people. We aimed to assess feasibility, reach and costs of implementing a new tailored computer-aided health and social risk appraisal system in primary care. METHODS: Design: Feasibility study. SETTING: Five General Practices in London (Ealing) and Hertfordshire, United Kingdom (UK) Participants: Random sample of patients aged 65 + years. INTERVENTION: The Multi-dimensional Risk Appraisal for Older people (MRA-O) system includes: 1) Postal questionnaire including health, lifestyle, social and environmental domains; 2) Software system generating a personalised feedback report with advice on health and wellbeing; 3) Follow-up of people with new concerning or complex needs by GPs or practice nurses. EVALUATION: Feasibility of implementation; participant wellbeing, functional ability and quality of life; social needs, health risks, potential lifestyle changes; and costs of implementation. RESULTS: Response rates to initial postal invitations were low (526/1550, 34%). Of these, 454/526 (86%) completed MRA-O assessments. Compared to local UK Census data on older people, participants were younger, more were owner-occupiers and fewer were from ethnic minority groups than expected. A range of problems was identified by participants, including pain in last week (269/438, 61.4%), low physical activity (173/453, 38.2%), sedentary lifestyle (174/447, 38.3%), falls (117/439, 26.7%), incontinence (111/441 25.2%), impaired vision 116/451 (25.7%), impaired hearing (145/431, 33.6%), depressed mood (71/451, 15.7%), impaired memory (44/444 9.9%), social isolation (46/449, 10.2%) and loneliness (31/442, 7.0%). Self-rated health was good/excellent in 312/437 (71.4%), and quality of life and well-being were slightly above age-specific population norms. Implementation costs were low. Practices reviewed medical records of 143/454 (31.5%) of participants as a consequence of their responses, and actively followed up 110/454 (24.2%) of their patients. CONCLUSIONS: A computer-aided risk appraisal system was feasible for General Practices to implement, yields useful information about health and social problems, and identifies individual needs. Participation rates were however low, particularly for the oldest old, the poorest, and ethnic minority groups, and this type of intervention may increase inequalities in access. Widespread implementation of this approach would require work to address potential inequalities.

Effective health care for older people living and dying in care homes: a realist review.

BACKGROUND: Care home residents in England have variable access to health care services. There is currently no coherent policy or consensus about the best arrangements to meet these needs. The purpose of this review was to explore the evidence for how different service delivery models for care home residents support and/or improve wellbeing and health-related outcomes in older people living and dying in care homes. METHODS: We conceptualised models of health care provision to care homes as complex interventions. We used a realist review approach to develop a preliminary understanding of what supported good health care provision to care homes. We completed a scoping of the literature and interviewed National Health Service and Local Authority commissioners, providers of services to care homes, representatives from the Regulator, care home managers, residents and their families. We used these data to develop theoretical propositions to be tested in the literature to explain why an intervention may be effective in some situations and not others. We searched electronic databases and related grey literature. Finally the findings were reviewed with an external advisory group. RESULTS: Strategies that support and sustain relational working between care home staff and visiting health care professionals explained the observed differences in how health care interventions were accepted and embedded into care home practice. Actions that encouraged visiting health care professionals and care home staff jointly to identify, plan and implement care home appropriate protocols for care, when supported by ongoing facilitation from visiting clinicians, were important. Contextual factors such as financial incentives or sanctions, agreed protocols, clinical expertise and structured approaches to assessment and care planning could support relational working to occur, but of themselves appeared insufficient to achieve change. CONCLUSION: How relational working is structured between health and care home staff is key to whether health service interventions achieve health related outcomes for residents and their respective organisations. The belief that either paying clinicians to do more in care homes and/or investing in training of care home staff is sufficient for better outcomes was not supported.

The feasibility of a train-the-trainer approach to end of life care training in care homes: an evaluation.

BACKGROUND: The ABC End of Life Education Programme trained approximately 3000 care home staff in End of Life (EoL) care. An evaluation that compared this programme with the Gold Standards Framework found that it achieved equivalent outcomes at a lower cost with higher levels of staff satisfaction. To consolidate this learning, a facilitated peer education model that used the ABC materials was piloted. The goal was to create a critical mass of trained staff, mitigate the impact of staff turnover and embed EoL care training within the organisations. The aim of the study was to evaluate the feasibility of using a train the trainer (TTT) model to support EoL care in care homes. METHODS: A mixed method design involved 18 care homes with and without on-site nursing across the East of England. Data collection included a review of care home residents' characteristics and service use (n = 274), decedents' notes n = 150), staff interviews (n = 49), focus groups (n = 3), audio diaries (n = 28) and observations of workshops (n = 3). RESULTS: Seventeen care homes participated. At the end of the TTT programme 28 trainers and 114 learners (56% of the targeted number of learners) had been trained (median per home 6, range 0-13). Three care homes achieved or exceeded the set target of training 12 learners. Trainers ranged from senior care staff to support workers and administrative staff. Results showed a positive association between care home stability, in terms of leadership and staff turnover, and uptake of the programme. Care home ownership, type of care home, size of care home, previous training in EoL care and resident characteristics were not associated with programme completion. Working with facilitators was important to trainers, but insufficient to compensate for organisational turbulence. Variability of uptake was also linked to management support, programme fit with the trainers' roles and responsibilities and their opportunities to work with staff on a daily basis. CONCLUSION: When there is organisational stability, peer to peer approaches to skills training in end of life care can, with expert facilitation, cascade and sustain learning in care homes.

Protocol for a realist evaluation of Recovery College dementia courses: understanding coproduction through ethnography.

INTRODUCTION: Support following a dementia diagnosis in the UK is variable. Attending a Recovery College course with and for people with dementia, their supporters and healthcare professionals (staff), may enable people to explore and enact ways to live well with dementia. Recovery Colleges are established within mental health services worldwide, offering peer-supported short courses coproduced in partnership between staff and people with lived experience of mental illness. The concept of recovery is challenging in dementia narratives, with little evidence of how the Recovery College model could work as a method of postdiagnostic dementia support. METHODS AND ANALYSIS: Using a realist evaluation approach, this research will examine and define what works, for whom, in what circumstances and why, in Recovery College dementia courses. The ethnographic study will recruit five case studies from National Health Service Mental Health Trusts across England. Sampling will seek diversity in new or long-standing courses, delivery methods and demographics of population served. Participant observations will examine course coproduction. Interviews will be undertaken with people with dementia, family and friend supporters and staff involved in coproducing and commissioning the courses, as well as people attending. Documentary materials will be reviewed. Analysis will use a realist logic of analysis to develop a programme theory containing causal explanations for outcomes, in the form of context-mechanism-outcome-configurations, at play in each case. ETHICS AND DISSEMINATION: The study received approval from Coventry & Warwickshire Research Ethics Committee (22/WM/0215). Ethical concerns include not privileging any voice, consent for embedded observational fieldwork with people who may experience fluctuating mental capacity and balancing researcher 'embedded participant' roles in publicly accessible learning events. Drawing on the realist programme theory, two stakeholder groups, one people living with dementia and one staff will work with researchers to coproduce resources to support coproducing Recovery College dementia courses aligned with postdiagnostic services.

Codesigning a systemic discharge intervention for inpatient mental health settings (MINDS): a protocol for integrating realist evaluation and an engineering-based systems approach.

INTRODUCTION: Transition following discharge from mental health hospital is high risk in terms of relapse, readmission and suicide. Discharge planning supports transition and reduces risk. It is a complex activity involving interacting systemic elements. The codesigning a systemic discharge intervention for inpatient mental health settings (MINDS) study aims to improve the process for people being discharged, their carers/supporters and staff who work in mental health services, by understanding, co-designing and evaluating implementation of a systemic approach to discharge planning. METHODS AND ANALYSIS: The MINDS study integrates realist research and an engineering-informed systems approach across three stages. Stage 1 applies realist review and evaluation using a systems approach to develop programme theories of discharge planning. Stage 2 uses an Engineering Better Care framework to codesign a novel systemic discharge intervention, which will be subjected to process and economic evaluation in stage 3. The programme theories and resulting care planning approach will be refined throughout the study ready for a future clinical trial. MINDS is co-led by an expert by experience, with researchers with lived experience co-leading each stage. ETHICS AND DISSEMINATION: MINDS stage 1 has received ethical approval from Yorkshire & The Humber-Bradford Leeds (Research Ethics Committee (22/YH/0122). Findings from MINDS will be disseminated via high-impact journal publications and conference presentations, including those with service user and mental health professional audiences. We will establish routes to engage with public and service user communities and National Health Service professionals including blogs, podcasts and short videos. TRIAL REGISTRATION NUMBER: MINDS is funded by the National Institute of Health Research (NIHR 133013) https://fundingawards.nihr.ac.uk/award/NIHR133013. The realist review protocol is registered on PROSPERO. PROSPERO REGISTRATION NUMBER: CRD42021293255.

Effectiveness and sustainability of volunteering with older people living in care homes: A mixed methods systematic review.

Older people living in care homes should be considered part of the wider local community; however, little is known about what enables them to connect with people not paid to look after them or family members. Volunteering can complement paid and familial support. While volunteering is common in community settings, care home residents are less likely to benefit from their input. We conducted a mixed methods systematic review and stakeholder consultation that aimed to identify volunteer activities in care homes and evidence for their effectiveness and sustainability. Databases were searched from 2000 to July 2021. Studies of all designs reporting volunteer-led activities with care home residents 65-years or over were included. Data on interventions, study population, study context, outcomes and implementation issues were extracted and synthesised. We identified 36 studies on the use, effectiveness and implementation of volunteering in care homes, although the overall strength of evidence was weak. Resident engagement and mood appeared to improve during volunteer-led activities, but there was little research examining the longer-term impact. Qualitative and stakeholder data suggest considerable investment is needed to initiate and maintain volunteering initiatives, but there are positive benefits for volunteers, residents and staff if an intervention is sustained. Financial cost for care home facilities is unclear. Interventions that address inequalities in accessing volunteer support within the resident population and between facilities should be considered.

Can pediatric sleep questions be incorporated into a risk model to predict respiratory complications following adenotonsillectomy?

BACKGROUND: Adenotonsillectomy, one of the most frequent surgical procedures in children, is usually performed for sleep-disordered breathing, a disease spectrum from primary snoring to obstructive sleep apnea. Children undergoing an adenotonsillectomy may be at risk for perioperative respiratory complications, necessitating intervention or escalation of care. However, there is no effective preoperative screening or risk-stratification model for perioperative respiratory complications that incorporates not only clinical history and physical examination but also sleep question responses for children as there is for adults. OBJECTIVES: The aim of this prospective observational study was to develop a risk-stratification model for perioperative respiratory complications in children undergoing an adenotonsillectomy incorporating not only clinical history and physical examination but also sleep question responses. METHODS: A 25-question sleep questionnaire was prospectively administered preoperatively for 1895 children undergoing an adenotonsillectomy from November 2015 to December 2017. The primary outcome measure was overall perioperative respiratory complications, collected prospectively and defined as having at least one major or minor complication intraoperatively or postoperatively. RESULTS: The incidence of overall perioperative respiratory complications was 20.4%. Preoperative factors associated with perioperative respiratory complications in the multiple regression model were age, race, preoperative tonsil size, the presence of a syndrome, and the presence of a pulmonary disease. None of the sleep questionnaire responses remained in the multivariable analysis. The area under the ROC curve for the risk stratification model incorporating sleep question responses was only 0.6114% (95% CI: 0.60, 0.67). CONCLUSION: Preoperative sleep question responses may be unable to predict overall perioperative respiratory complications in children undergoing an adenotonsillectomy. A robust risk stratification model incorporating sleep question responses with clinical history and physical examination was unable to discriminate or predict perioperative respiratory complications in our population undergoing an adenotonsillectomy.

Quality and readability of internet information about stuttering.

PURPOSE: We examined the quality and readability of English-language Internet information about stuttering and evaluated the results considering recommendations by experts in health literacy. METHOD: A search of Internet websites containing information about stuttering was conducted. Three key words (i.e., stuttering, stammering, speech disfluency) were entered into five country-specific versions of the most commonly used Internet search engine. A total of 79 websites were assessed. Their origin (commercial, non-profit, government, personal or university), quality [Health On the Net (HON) certification and DISCERN scores], and readability [Flesch Reading Ease (FRE) score, Flesch-Kincaid Grade Level Formula (F-KGL), and Simple Measure of Gobbledygook (SMOG)] were assessed. RESULTS: Of the 79 websites, 38 % were of commercial, 42 % were of nonprofit organization, 15 % were of government and 5% were of university origins, respectively. Only 13 % had obtained HON certification and the mean DISCERN scores was 3.10 in a 5-point scale. The mean reading grade levels were at 13th and 14th grade and 100 % of the websites exceeded the recommended 5th to 6th reading grade level for health information. CONCLUSIONS: The quality of Internet-based health information about the treatment of stuttering is generally adequate, but actual usability of the sites examined in this study may be limited due to poor readability levels. This is problematic in persons with poor literacy skills. Since the Internet can be readily accessed as a valuable consumer information resource, speech-language pathologists and other healthcare professionals have an opportunity to direct consumers to websites that provide readable information of good quality.

Setting Priorities to Inform Assessment of Care Homes' Readiness to Participate in Healthcare Innovation: A Systematic Mapping Review and Consensus Process.

Organisational context is known to impact on the successful implementation of healthcare initiatives in care homes. We undertook a systematic mapping review to examine whether researchers have considered organisational context when planning, conducting, and reporting the implementation of healthcare innovations in care homes. Review data were mapped against the Alberta Context Tool, which was designed to assess organizational context in care homes. The review included 56 papers. No studies involved a systematic assessment of organisational context prior to implementation, but many provided post hoc explanations of how organisational context affected the success or otherwise of the innovation. Factors identified to explain a lack of success included poor senior staff engagement, non-alignment with care home culture, limited staff capacity to engage, and low levels of participation from health professionals such as general practitioners (GPs). Thirty-five stakeholders participated in workshops to discuss findings and develop questions for assessing care home readiness to participate in innovations. Ten questions were developed to initiate conversations between innovators and care home staff to support research and implementation. This framework can help researchers initiate discussions about health-related innovation. This will begin to address the gap between implementation theory and practice.

Supporting general hospital staff to provide dementia sensitive care: A realist evaluation.

BACKGROUND: There are an increasing number of interventions to improve hospital care for patients with dementia. Evidence for their impact on staff actions and patient outcomes is, however, limited and context dependent. OBJECTIVE: To explain the factors that support hospital staff to provide dementia sensitive care and with what outcomes for patients with dementia. DESIGN: A realist evaluation using a two-site case study approach. SETTING: Two hospital trusts in the East of England. Site 1 had a ward for patients with dementia that would address their medical and mental health needs. Site 2 used a team of healthcare assistants, who had support from dementia specialist nurses, to work with patients with dementia across the hospital. PARTICIPANTS: Hospital staff who had a responsibility for inpatients with dementia (healthcare assistants, nurses, medical staff, allied healthcare professionals and support staff) (n = 36), patients with dementia (n = 28), and family carers of patients with dementia (n = 2). METHODS: A three stage realist evaluation: 1) building the programme theory of what works and when; 2) testing the programme theory through empirical data (80 h non-participant observation, 42 interviews, 28 patient medical notes, 27 neuropsychiatric inventory, and documentary review); 3) synthesis and verification of findings with key stakeholders. FINDINGS: The programme theory comprised six interconnected context-mechanism-outcome configurations: 1) knowledge and authority to respond to an unmet need; 2) role relevant training and opportunities for reflection; 3) clinical experts and senior staff promoting practices that are patient-focused; 4) engaging with opportunities to spend time with patients; 5) risk management as an opportunity for person-centred care; 6) valuing dementia care as skilled work. Effective interactions reduced patient distress and supported patient orientation. Training and allocation of staff time were of themselves insufficient to ensure dementia care was prioritised and valued as skilled work. Staff concerns about the consequences of adverse incidents and work pressures on the ward, even with support, took precedence and influenced the quality of their interactions with patients with dementia. A key finding linked to staff retention and developing capacity in the workforce to provide expert dementia care was that despite extra training and organisational endorsement, nursing staff did not regard dementia care as skilled nursing work. CONCLUSIONS: There is increased awareness and organisational commitment to dementia-friendly healthcare in general hospitals. However, in addition to training and adapting the environment to the patient, further work is needed to make explicit the specialist skills required for effective dementia care.

Dementia-friendly interventions to improve the care of people living with dementia admitted to hospitals: a realist review.

OBJECTIVES: To identify features of programmes and approaches to make healthcare delivery in secondary healthcare settings more dementia-friendly, providing a context-relevant understanding of how interventions achieve outcomes for people living with dementia. DESIGN: A realist review conducted in three phases: (1) stakeholder interviews and scoping of the literature to develop an initial programme theory for providing effective dementia care; (2) structured retrieval and extraction of evidence; and (3) analysis and synthesis to build and refine the programme theory. DATA SOURCES: PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Cochrane Library, NHS Evidence, Scopus and grey literature. ELIGIBILITY CRITERIA: Studies reporting interventions and approaches to make hospital environments more dementia-friendly. Studies not reporting patient outcomes or contributing to the programme theory were excluded. RESULTS: Phase 1 combined findings from 15 stakeholder interviews and 22 publications to develop candidate programme theories. Phases 2 and 3 identified and synthesised evidence from 28 publications. Prominent context-mechanism-outcome configurations were identified to explain what supported dementia-friendly healthcare in acute settings. Staff capacity to understand the behaviours of people living with dementia as communication of an unmet need, combined with a recognition and valuing of their role in their care, prompted changes to care practices. Endorsement from senior management gave staff confidence and permission to adapt working practices to provide good dementia care. Key contextual factors were the availability of staff and an alignment of ward priorities to value person-centred care approaches. A preoccupation with risk generated responses that werelikely to restrict patient choice and increase their distress. CONCLUSIONS: This review suggests that strategies such as dementia awareness training alone will not improve dementia care or outcomes for patients with dementia. Instead, how staff are supported to implement learning and resources by senior team members with dementia expertise is a key component for improving care practices and patient outcomes. TRIAL REGISTRATION NUMBER: CRD42015017562.

Interventions that support the creation of dementia friendly environments in health care: protocol for a realist review.

BACKGROUND: Improving health-care outcomes for people living with dementia when they are admitted to hospital is a policy priority. Dementia friendly interventions in health care promote inclusion of patients and carers in decision-making and adapt practices and environments to be appropriate to the needs of people with cognitive impairment. While there has been a wealth of activity, the number of studies evaluating interventions is limited, and the majority focuses on reporting staff and organisational outcomes. By focusing on patient and carer outcomes, this review will aim to develop an explanatory account of how and in what circumstances dementia friendly environments in health care work for people living with dementia and with what outcomes. METHOD/DESIGN: Realist review is a theory-driven method which seeks to produce explanatory accounts of why interventions work and specifically, what combination of components are most effective in producing particular outcomes. Stakeholder interviews, a review of the literature, and an expert steering group workshop will be used to explore the assumptions behind interventions that are designed to enhance health care for people living with dementia to understand the underlying programme theories. The review will focus on studies that report patient and carer outcomes, including involvement in decision-making, length of stay and referral to long-term care, adverse incidents (e.g. patient distress, delirium falls, nutrition and hydration and infection), antipsychotic medication prescribing, evidence of patient-centred care and patient and carer satisfaction. DISCUSSION: The review will provide an explanatory model about how dementia friendly interventions in hospital settings improve outcomes for people living with dementia and their family carers and in what circumstances for future testing and evaluation of future dementia friendly initiatives. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42015017562.

Living and dying: responsibility for end-of-life care in care homes without on-site nursing provision - a prospective study.

The aim of the study was to describe the expectations and experiences of end-of-life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed-method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill-health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; 'talking about dying' and 'integrating living and dying'. All participants stated that they were committed to providing end-of-life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end-of-life care, doubts from care home and primary healthcare staff about their capacity to work together when residents' trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time.

Living in uncertain times: trajectories to death in residential care homes.

BACKGROUND: Older people living in care homes often have limited life expectancy. Practitioners and policymakers are increasingly questioning the appropriateness of many acute hospital admissions and the quality of end-of-life care provided in care homes. AIM: To describe care home residents' trajectories to death and care provision in their final weeks of life. DESIGN AND SETTING: Prospective study of residents in six residential care homes in three sociodemographically varied English localities: Hertfordshire, Essex, and Cambridgeshire. METHOD: Case note reviews and interviews with residents, care home staff, and healthcare professionals. RESULTS: Twenty-three out of 121 recruited residents died during the study period. Four trajectories to death were identified: 'anticipated dying' with an identifiable end-of-life care period and death in the care home (n = 9); 'unexpected dying' with death in the care home that was not anticipated and often sudden (n = 3); 'uncertain dying' with a period of diagnostic uncertainty or difficult symptom management leading to hospital admission and inpatient death (n = 7); and 'unpredictable dying' with an unexpected event leading to hospital admission and inpatient death (n = 4). End-of-life care tools were rarely used. Most residents who had had one or more acute hospital admission were still alive at the end of the study. CONCLUSION: For some care home residents there was an identifiable period when they were approaching the end-of-life and planned care was put in place. For others, death came unexpectedly or during a period of considerable uncertainty, with care largely unplanned and reactive to events.

The optimal study: describing the key components of optimal health care delivery to UK care home residents: a research protocol.

Long-term institutional care in the United Kingdom is provided by care homes. Residents have prevalent cognitive impairment and disability, have multiple diagnoses, and are subject to polypharmacy. Prevailing models of health care provision (ad hoc, reactive, and coordinated by general practitioners) result in unacceptable variability of care. A number of innovative responses to improve health care for care homes have been commissioned. The organization of health and social care in the United Kingdom is such that it is unlikely that a single solution to the problem of providing quality health care for care homes will be identified that can be used nationwide. Realist evaluation is a methodology that uses both qualitative and quantitative data to establish an in-depth understanding of what works, for whom, and in what settings. In this article we describe a protocol for using realist evaluation to understand the context, mechanisms, and outcomes that shape effective health care delivery to care home residents in the United Kingdom. By describing this novel approach, we hope to inform international discourse about research methodologies in long-term care settings internationally.