Family carer experiences of hospice care at home: Qualitative findings from a mixed methods realist evaluation.

BACKGROUND: Hospice-at-home aims to enable patients approaching end-of-life to die at home and support their carers. A wide range of different service models exists but synthesised evidence on how best to support family carers to provide sustainable end-of-life care at home is limited. AIM: To explore what works best to promote family carers' experiences of hospice-at-home. DESIGN: Realist evaluation with mixed methods. This paper focuses on qualitative interviews with carers (to gain their perspective and as proxy for patients) and service providers from 12 case study sites in England. Interviews were coded and programme theories were refined by the research team including two public members. SETTING/PARTICIPANTS: Interviews with carers (involved daily) of patients admitted to hospice-at-home services (n = 58) and hospice-at-home staff (n = 78). RESULTS: Post bereavement, 76.4% of carers thought that they had received as much help and support as they needed and most carers (75.8%) rated the help and support as excellent or outstanding. Of six final programme theories capturing key factors relevant to providing optimum services, those directly relevant to carer experiences were: integration and co-ordination of services; knowledge, skills and ethos of hospice staff; volunteer roles; support directed at the patient-carer dyad. CONCLUSIONS: Carers in hospice-at-home services identified care to be of a higher quality than generic community services. Hospice staff were perceived as having 'time to care', communicated well and were comfortable with dying and death. Hands-on care was particularly valued in the period close to death.

Realist evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Findings from a rapid realist review.

OBJECTIVES: Waiting times in the UK for an autism diagnostic assessment have increased rapidly in the last 5 years. This review explored research (including 'grey' literature) to uncover the current evidence base about autism diagnostic pathways and what works best, for whom and in what circumstances, to deliver high quality and timely diagnosis. DESIGN: We performed a Rapid Realist Review consistent with recognised standards for realist syntheses. We collected 129 grey literature and policy/guidelines and 220 articles from seven databases (January 2011-December 2019). We developed programme theories of how, why and in what contexts an intervention worked, based on cross comparison and synthesis of evidence. The focus was on identifying factors that contributed to a clearly defined intervention (the diagnostic pathway), associated with specific outcomes (high quality and timely), within specific parameters (Autism diagnostic services in Paediatric and Child & Adolescent Mental Health services in the UK). Our Expert Stakeholder Group, including representatives from local parent forums, national advocacy groups and clinicians, was integral to the process. RESULTS: Based on 45 relevant articles, we identified 7 programme theories that were integral to the process of diagnostic service delivery. Four were related to the clinical pathway: initial recognition of possible autism; referral and triaging; diagnostic model; and providing feedback to parents. Three programme theories were pertinent to all stages of the referral and diagnostic process: working in partnership with families; interagency working; and training, service evaluation and development. CONCLUSIONS: This theory informed review of childhood autism diagnostic pathways identified important aspects that may contribute to efficient, high quality and family-friendly service delivery. The programme theories will be further tested through a national survey of current practice and in-depth longitudinal case studies of exemplar services. TRIAL REGISTRATION NUMBER: NCT04422483.

Factors influencing trends in opioid prescribing for older people: a scoping review.

AIM: The review aimed to identify factors influencing opioid prescribing as regular pain-management medication for older people. BACKGROUND: Chronic pain occurs in 45%-85% of older people, but appears to be under-recognised and under-treated. However, strong opiate prescribing is more prevalent in older people, increasing at the fastest rate in this age group. METHODS: This review included all study types, published 1990-2017, which focused on opioid prescribing for pain management among older adults. Arksey and O'Malley's framework was used to scope the literature. PubMed, EBSCO Host, the UK Drug Database, and Google Scholar were searched. Data extraction, carried out by two researchers, included factors explaining opioid prescribing patterns and prescribing trends. FINDINGS: A total of 613 papers were identified and 53 were included in the final review consisting of 35 research papers, 10 opinion pieces and 8 grey literature sources. Factors associated with prescribing patterns were categorised according to whether they were patient-related, prescriber-driven, or system-driven. Patient factors included age, gender, race, and cognition; prescriber factors included attitudes towards opioids and judgements about 'normal' pain; and policy/system factors related to the changing policy landscape over the last three decades, particularly in the USA. CONCLUSIONS: A large number of context-dependent factors appeared to influence opioid prescribing for chronic pain management in older adults, but the findings were inconsistent. There is a gap in the literature relating to the UK healthcare system; the prescriber and the patient perspective; and within the context of multi-morbidity and treatment burden.

Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Protocol for a rapid realist review.

INTRODUCTION: The National Health Service (NHS) Long-Term Plan (2019) acknowledges that children and young people with suspected autism wait too long for diagnostic assessment and sets out to reduce waiting times. However, diagnostic pathways vary with limited evidence on what model works best, for whom and in what circumstances. The National Autism Plan for Children (2003) recommended that assessment should be completed within 13 weeks but referral to diagnosis can take as long as 799 days.This Rapid Realist Review (RRR) is the first work package in a national programme of research: a Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD). We explore how particular approaches may deliver high-quality and timely autism diagnostic services for children with possible autism; high quality is defined as compliant with National Institute for Heath and Care Excellence (2011) guidelines, and timely as a pathway lasting no more than one calendar year, based on previous work. METHODS AND ANALYSIS: RRR is a well-established approach to synthesising evidence within a compressed timeframe to identify models of service delivery leading to desired outcomes. RRR works backwards from intended outcomes, identified by NICE guidelines and the NHS England Long-Term Plan. The focus is a clearly defined intervention (the diagnostic pathway), associated with specific outcomes (high quality and timely), within a particular set of parameters (Autism and Child & Adolescent Mental Health services in the UK). Our Expert Stakeholder Group consists of policymakers, content experts and knowledge users with a wide range of experience to supplement, tailor and expedite the process. The RRR is consistent with Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) and includes identifying the research question, searching for information, quality appraisal, data extraction, synthesising the evidence, validation of findings with experts and dissemination. ETHICS AND DISSEMINATION: Ethical approval not required. Findings will inform the wider RE-ASCeD evaluation and be reported to NHS England. TRIAL REGISTRATION NUMBER: NCT04422483. This protocol relates to Pre-results.

An evaluation of the clinical microsystems approach in general practice quality improvement.

BACKGROUND: Changes to the general practice (GP) contract in England (April 2019) introduced a new quality improvement (QI) domain. The clinical microsystems programme is an approach to QI with limited evidence in primary care. AIM: To explore experiences of GP staff participating in a clinical microsystems programme. DESIGN AND SETTING: GPs within one clinical commissioning group (CCG) in South East England. Normalisation process theory informed qualitative approach. METHOD: Review of all CCG clinical microsystems projects using pre-existing data. The Diffusion of Innovation Cycle was used to inform the sampling frame and GPs were invited to participate in interviews or focus groups. Ten practices participated; 11 coaches and 16 staff were interviewed. RESULTS: The majority of projects were process-driven activities related to administrative systems. Projects directly related to health outputs were fewer and related to externally imposed targets. Four key elements facilitated practices to engage: feeling in control; receiving enhanced service payment; having a senior staff member championing the approach; and good practice-coach relationship. There appeared to be three key benefits in addition to project-specific ones: improved working relationships between CCG and practice; more cohesive practice team; and time to reflect. CONCLUSION: Small projects with clear parameters were more successful than larger ones or those spanning organisations. However, there was little evidence suggesting the key benefits were unique attributes of the microsystems approach and sustainability was problematic. Future research should focus on cross-organisational approaches to QI and identify what, if any, added value the approach provides.

How unmet are unmet needs post-stroke? A policy analysis of the six-month review.

BACKGROUND: Stroke is the fourth largest cause of death in the UK and a leading cause of death and disability worldwide. Policy recommends reviewing patients at six-months post-stroke to identify unmet needs but lacks evidence of effectiveness. This study explored needs identified by patients, how they were addressed by the six-month review (6MR) and whether or not policy aspirations for the review were substantiated by the data. METHODS: A multiple case study design underpinned by critical realism. Data sources included interviews with 46 patients and 28 professionals across three sites in the South East Coast of England. Patients' interviews coincided with their reviews of which twenty-nine were observed. Thematic analysis of interviews, observations and policy documents was carried out within and across sites. RESULTS: There were 'hotspots' in the care pathway where patients and carers felt particularly unsupported. Whilst these gaps exacerbated anxiety, they were neither universal nor ameliorated by review. Patients consistently identified unmet needs related to rehabilitation, information/education and support. Stroke nurse specialists focused on investigations, medication and liaising with general practitioners or consultants while the Stroke Association co-ordinator focused on sign-posting to other services and provision of generic information which not all respondents found helpful. The remit of review was more modest than that of policy aspirations. CONCLUSIONS: The review rests on two causal assumptions: that identifying unmet need will lead to its amelioration; and that provision of information will lead to behaviour change and self-management. While there was some evidence to support the former, there was almost none for the latter. The 6MR would benefit from a patient-led approach to its timing and format; a consistent and individualised approach to stroke education and self-management that is embedded across the care pathway; and targeting reviews should be considered.

Positioning the six-month review in the recovery process post-stroke: The ideology of personal responsibility.

Stroke is the UK's fourth highest cause of death and an estimated 300,000 people in England are living with related disability. This paper explores the six-month review (6MR), a policy initiative that aimed to ameliorate unmet need. A multiple case study approach underpinned by critical realism was used to elicit the views of patients, carers, providers and commissioners across three sites using interviews, observations and documentation. Forty-six patients (age range 28-91 years), 30 carers and 28 professionals were interviewed between December 2015 and October 2016. Twenty-nine reviews were observed. Data was analysed thematically across sites. 6MRs carried out by stroke nurse specialists (SNSs) were found to be more medically orientated than those completed by a Stroke Association (SA) co-ordinator who focused on social issues. Reviewers regarded reviews primarily as an opportunity to address unmet need and signpost to further services. Patients responded in three different ways: proactive and engaged, reflected an active orientation to recovery and self-management; proactive and self-managing on their own terms, encompassed patients who were striving for independence but took their own approach sometimes at odds with that of clinicians; and passive orientation, whereby patients did not engage in rehabilitation or self-management. Patients identified different priorities to those of reviewers, particularly those with other long-term conditions and this appeared to contribute to the dissatisfaction that some expressed. In conclusion, there was little evidence that the 6MR played a key role in recovery. Locally defined outcomes for the 6MR reflecting national policy were not substantiated by the findings. Our findings suggest that the 6MR should review therapy goals and facilitate patient-led goals. Reviewers should be allowed the freedom to individualise the process rather than adhering to a rigid framework dictated by national policy and local protocols.

Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community: a qualitative study.

PURPOSE: To explore the experiences of individuals who have had a severe traumatic brain injury (TBI) and their carers in the first month post-discharge from in-patient rehabilitation into living in the community. METHOD: Using a qualitative approach underpinned by critical realism, we explored the narratives of 10 patients and nine carers using semi-structured interviews approximately one month post-discharge. Thematic analysis was carried out independently by two researchers. RESULTS: Firstly, perceptions of support were mixed but many patients and carers felt unsupported in the inpatient phase, during transitions between units and when preparing for discharge. Secondly, they struggled to accept a new reality of changed abilities, loss of roles and loss of autonomy. Thirdly, early experiences post-discharge exacerbated fears for the future. CONCLUSIONS: Most patients and carers struggled to identify a cohesive plan that supported their transition to living in the community. Access to services required much persistence on the part of carers and tended to be short-term, and therefore did not meet their long-term needs. We propose the need for a case manager to be involved at an early stage of their rehabilitation and act as a key point for information and access to on-going rehabilitation and other support services. Implications for Rehabilitation Traumatic Brain Injury (TBI) is a major cause of long-term disability. It can affect all areas of daily life and significantly reduce quality of life for both patient and carer. Professionals appear to underestimate the change in abilities and impact on daily life once patients return home. Community services maintain a short-term focus, whereas patients and carers want to look further ahead - this dissonance adds to anxiety. The study's findings on service fragmentation indicate an urgent need for better integration within health services and across health, social care and voluntary sectors. A link person/case manager who oversees the patient journey from admission onwards would help improve integrated care and ensure the patient, and carer, are at the center of service provision.

Health and social care responses to the Department of Health Heatwave Plan.

BACKGROUND: The increasing risk of heatwaves in England poses a particular threat to the health of elderly people. A National Heatwave Plan has been produced to ensure that adaptation plans are established. The objective was to explore the perceptions of frontline statutory and voluntary sector staff on the feasibility of implementing the Heatwave Plan for elderly people in the community. METHODS: Semi-structured interviews and focus groups with 109 health, social care and voluntary staff from three London Boroughs. RESULTS: Few frontline staff were aware of the Plan. Most respondents did not perceive heatwaves to be a sufficiently frequent event to require prioritization within their routine summer workloads. They highlighted the complexities associated with defining vulnerability and identifying vulnerable individuals as well as barriers to implementation of the Plan. Respondents suggested a multi-faceted approach to interventions including a public health campaign, community engagement and increasing the responsiveness of statutory services. CONCLUSION: The issues highlighted could hinder effective implementation of the Heatwave Plan. Ensuring continuity of care so that timely information can be recorded and disseminated may address the problems associated with shifting vulnerability. Best practice with respect to inter-sectoral collaboration should be identified and innovative multi-faceted interventions should be designed and evaluated.

Perceptions of heatwave risks to health: interview-based study of older people in London and Norwich, UK.

BACKGROUND: Most projections of climate change suggest an increased frequency of heatwaves in England over coming decades; older people are at particular risk. This could result in substantial mortality and morbidity. OBJECTIVE: To determine elderly people's knowledge and perceptions of heat-related risks to health, and of protective behaviours. METHODS: Semi-structured interviews: 73 men and women, 72-94 years, living in their own homes in London and Norwich, UK. RESULTS: Few respondents considered themselves either old or at risk from the effects of heat, even though many had some form of relevant chronic illness; they did recognize that some medical conditions might increase risks in others. Most reported that they had taken appropriate steps to reduce the effects of heat. Some respondents considered it appropriate for the government to take responsibility for protecting vulnerable people, but many thought state intervention was unnecessary, intrusive and unlikely to be effective. Respondents were more positive about the value of appropriately disseminated advice and solutions by communities themselves. CONCLUSION: The Heatwave Plan should consider giving greater emphasis to a population-based information strategy, using innovative information dissemination methods to increase awareness of vulnerability to heat among the elderly and to ensure clarity about behaviour modification measures.