BACKGROUND:Interest in public involvement in UK health and social care research continues to grow, yet many initiatives are short-lived and offer public collaborators little meaningful influence. Established in 2019 within the NIHR Applied Research Collaboration North West Coast (ARC NWC), the Community Research and Engagement Network (CoREN) was created to provide a sustained platform for co-production of health and social care research. This article reports a theory-informed qualitative process evaluation of the CoREN, examining its progress towards democratic, long-term co-production and the factors that enable or impede it. METHODS:Methodologically, a qualitative, relational approach informed by deliberative democratic theory was used. Data were collected via semi-structured interviews with CoREN Leadership Group members (n=6) and affiliated researchers (n=4) and three focus groups with community members and partners (total n=17). Framework analysis was applied using a priori and inductive codes. RESULTS:Participants described the CoREN as a coordinating nexus that connects researchers and community organisations, brokers relationships and "plants seeds" that later grow into co-produced projects. Other key impacts included amplifying community voices in the research process, helping to equalise power dynamics in researcher-community relationships, and building research literacy and capacity within communities. Challenges included a lack of clarity regarding the CoREN's role and structure, bureaucratic inertia, and difficulties in including a representative range of diverse and less privileged communities across the region. CONCLUSIONS:The CoREN model demonstrates the promise of sustained, non-project-bound engagement networks as a means of strengthening democratic participation in research and building capacity for future co-production. Sustained investment, ongoing feedback and evaluation, and a commitment to overcoming structural barriers to participation are needed to ensure that progress towards equitable community-led research is maintained.
This systematic review reports evidence on practices and programmes that enhance successful primary-secondary school transition and participation for Indigenous students in Australia. A thematic analysis found three sets of practices: the school context; bridging practices; and Aboriginal and Torres Strait Islander students cultural recognition. Two narratives thread through the practices: centrality of relationships; and the entangled nature of Indigenous culture, Aboriginal and Torres Strait Islander student's identity and successful transition and participation in high school. Attending to relationships with students, their families, communities and local Elders supports cultural identity, belonging and improves participation in high school. Future research, program development and implementation should acknowledge students' unique needs and collaborate with students, their families and community. School staff ought to acknowledge the colonised context of education in Australia and increase the use of decolonising practices to support Aboriginal and Torres Strait Islander students to transition to and participate in high school.
This qualitative synthesis explores the experiences of UK communities facing growing health risks from climate change and extreme weather. The eight included studies show the profound impacts of extreme weather events such as floods on mental health, including challenges to self-identity and anxiety from the fear of flooding returning. Included data reveal individual and household impacts of extreme weather are mediated by a complex interaction of institutional support, community support, gender inequalities and personal agency. These factors are assessed against the backdrop of broader concepts in the social science and adaptation literature, including the role of the state, the inseparability of nature and society, the overlooked role of social structure, and environmental justice. It is argued that the use of qualitative synthesis methods in this topic area allows for an interconnected and context-sensitive analysis of the health impacts of climate change facing communities, diverging from other analytical approaches through inclusion of considerations such as social power, community dynamics, and the inter-relation of institutional action, community cohesion and individual agency. The resulting findings show how locally specific and highly contextual qualitative data can be used by those seeking to understand health risks from climate change within a locality.
INTRODUCTION:Peer education interventions are widely used in secondary schools with an aim to improve students' health literacy and/or health behaviours. Although peer education is a popular intervention technique with some evidence of effectiveness, we know relatively little about the key components that lead to health improvements among young people, or components that may be less helpful. This review aims to identify the main mechanisms involved in school-based peer education health interventions for 11-18-year-olds.METHODS:Five electronic databases were searched for eligible studies during October 2020, an updated search was then conducted in January 2023 to incorporate any new studies published between November 2020 and January 2023. To be included in the review, studies must have evaluated a school-based peer education intervention designed to address aspects of the health of students aged 11-18 years old and contain data relevant to mechanisms of effect of these interventions. No restrictions were placed on publication date, or country but only manuscripts available in English language were included.RESULTS:Forty papers were identified for inclusion with a total of 116 references to intervention mechanisms which were subsequently grouped thematically into 10 key mechanisms. The four most common mechanisms discussed were: 1) Peerness; similar, relatable and credible 2) A balance between autonomy and support, 3) School values and broader change in school culture; and 4) Informal, innovative and personalised delivery methods. Mechanisms were identified in quantitative, qualitative and mixed methods intervention evaluations.DISCUSSION:This study highlights a number of key mechanisms that can be used to inform development of future school-based peer education health interventions to maximise effectiveness. Future studies should aim to create theories of change or logic models, and then test the key mechanisms, rather than relying on untested theoretical assumptions. Future work should also examine whether particular mechanisms may lead to harm, and also whether certain mechanisms are more or less important to address different health issues, or whether a set of generic mechanisms always need to be activated for success.
National Institute for Health and Care Research School for Public Health Research.
Local government has an important role to play in mitigation and adaption to climate change. In the UK, 82% of all emissions fall within the scope of local government. However, in UK climate legislation there is no statutory requirement for local government to address climate change. Eighty percent of local authorities have declared a climate emergency and developed climate action plans. The aim of this study is to explore the association between social vulnerability (poor health, financial resources, deprivation, house prices) and the quality of climate action plans as measured by a scorecard system created by Climate Emergency UK. We hypothesis that areas with lower levels of social vulnerability will have higher quality climate plans. We utilised a citizen science created dataset ranking local government’s climate action plans and administrative data on local area characteristics related to social vulnerability at the local authority level. Descriptive analysis and multivariate regression were employed. We found a very small but significant association between total weighted score, central government funding and average house prices. For the individual dimensions of the quality of climate action plans, higher male life expectancy and house prices were associated with better commitment and integration and having a greater percentage of the population over the age of 65 was associated with a lower score in this dimension. More urban areas and less deprived areas had higher scores for planning climate education, skills and training. We suggest that greater national guidance is needed including sharing good practice on how to build community support and additional funding for climate change mitigation/adaption in particular for education, skills, and training in more deprived areas may help to prevent variations in climate action plans increasing inequalities.
Climate change is one of the biggest threats to public health in the 21st century. To date little action has been undertaken globally to mitigate the risks of climate change. The aim of this systematic review is to synthesise the qualitative literature on people’s and the health care systems’ lived experiences of climate change with a focus on health and health inequalities. We employed a narrative synthesis approach utilising a chronological perspective to frame the results. Seven electronic databases were searched for eligible studies which included Academic Search Ultimate; CINAHL; Embase; MEDLINE; PsycINFO; PubMed; Scopus; and Web of Science. The primary outcomes were lived experiences of the health/health inequalities effects of climate change. We identified 473 original records and eight papers met the inclusion criteria. Study quality was assessed by the Critical Appraisal Skills Programme for qualitative research. Seven studies focused on extreme weather events related to climate change with six of these looking at flooding and one at heat waves. One study examined perceptions and practice of people working in public health to adapting to climate change. Overall the results show challenges with perceiving and identifying risks of climate change which impact on preparedness for extreme weather events. The social determinants of health such as gender, housing, and community cohesion impact on people’s experience of climate change potentially exacerbating inequalities. Social capital and how widespread the extreme weather event was in the community impact on how people feel after the event and the rebuilding process. Trust in local government was also a key factor in shaping people’s perception of recovery. These findings can be used to help frame the dialogue around climate change mitigation and adaption to reduce the negative health and health inequality impacts.
Background: Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. Aim: To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on these enhanced services. Design: An exploratory longitudinal mixed-methods convergent design. This incorporated a quasi-experimental uncontrolled pre-post study using routine data, followed by semi-structured interviews with patients, family carers and health care professionals. Setting/participants: Data were collected within specialist palliative care services across two UK localities between 2018 and 2020. Routine data from 5601 unique individuals were analysed, with post-intervention interview data from patients (n = 19), family carers (n = 23) and health care professionals (n = 33; n = 33 time 1, n = 20 time 2). Results: The mean age of people receiving care was 73 years, predominantly white (90%) and with cancer (42%). There were trends for those in the intervention (enhanced care) period to stay in hospital 0.16 days fewer, but be hospitalised 2.67 more times. Females stayed almost 3.5 more days in the hospital, but were admitted 2.48 fewer times. People with cancer had shorter hospitalisations (4 days fewer), and had two fewer admission episodes. Themes from the qualitative data included responsiveness (of the service); reassurance; relationships; reciprocity (between patients, family carers and staff) and retention (of service staff). Conclusions: Enhanced seven-day services provide high quality integrated palliative care, with positive experiences for patients, carers and staff.
Background Climate change is one of the greatest threats to public health in this century. The UK is one of six countries that has enshrined in law a commitment to become net zero by 2050. However, there is a lack of guidance and structure for local government in the UK, which has responsibility for public health, to reach this goal and help their communities mitigate and adapt to the health and health inequality impacts of climate change. This study aimed to identify common barriers and facilitators related to addressing the health and health inequality impacts of climate change in local governments. Methods Using Normalisation Process Theory, we developed a two-round survey for people working in local authorities to identify the barriers and facilitators to including the health and health inequality impact of climate change in their climate action plans. The survey was delivered online via Qualtrics software. In the first-round respondents were able to express their views on barriers and facilitators and in the second round they ranked common themes identified from the first round. Two hundred and fifty people working in local government were invited to take part and n = 28 (11.2%) completed the first round of the survey and n = 14 completed the second round. Thematic analysis was used in Round 1 to identify common themes and weighted rankings were used to assess key barriers and facilitators in Round 2. Results Key facilitators were the need to save money on energy, and successful partnership working already in place including across local government, with local communities and external stakeholders. Key barriers were insufficient staff, resources and lack of support from management/leaders, and lack of local evidence. Conclusion To mitigate and adapt to the health impacts of climate change, local government must nurture a culture of innovation and collaboration to ensure that different departments work together This means not just working with external partners, but also collaborating and co-producing with communities to achieve health equity and mitigate the debilitating effect of climate change on public health.
Many mental health problems begin in adolescence and occur on a spectrum of severity: early recognition and intervention is important. This study is a quantitative feasibility study of the Mental Health Foundation's Peer Education Project (PEP). Attrition, psychometric properties of questionnaires, indications of improvement on a range of outcomes, and sample size required for a powered trial of effectiveness were assessed. 203 students completed the survey both pre and post-intervention. It was found that existing previously-validated measures had good psychometric properties, with two new questionnaires demonstrating reasonable reliability (self-help confidence alpha = 0.78, mental health knowledge alpha = 0.59). There were indications of improvement in help-seeking intentions, the number of sources likely to seek help from, and mental health knowledge from pre- to post-intervention. A future trial of PEP with a sample of approximately 36 schools, researcher-led data collections, and help-seeking intentions or sources as a primary outcome appears to be feasible.
Introduction Peer education, whereby peers (‘peer educators’) teach their other peers (‘peer learners’) about aspects of health is an approach growing in popularity across school contexts, possibly due to adolescents preferring to seek help for health-related concerns from their peers rather than adults or professionals. Peer education interventions cover a wide range of health areas but their overall effectiveness remains unclear. This review aims to summarise the effectiveness of existing peer-led health interventions implemented in schools worldwide. Methods Five electronic databases were searched for eligible studies in October 2020. To be included, studies must have evaluated a school-based peer education intervention designed to address the health of students aged 11–18-years-old and include quantitative outcome data to examine effectiveness. The number of interventions were summarised and the impact on improved health knowledge and reductions in health problems or risk-taking behaviours were investigated for each health area separately, the Mixed Methods Appraisal Tool was used to assess quality. Results A total of 2125 studies were identified after the initial search and 73 articles were included in the review. The majority of papers evaluated interventions focused on sex education/HIV prevention ( n = 23), promoting healthy lifestyles ( n = 17) and alcohol, smoking and substance use ( n = 16). Papers mainly reported peer learner outcomes (67/73, 91.8%), with only six papers (8.2%) focussing solely on peer educator outcomes and five papers (6.8%) examining both peer learner and peer educator outcomes. Of the 67 papers reporting peer learner outcomes, 35/67 (52.2%) showed evidence of effectiveness, 8/67 (11.9%) showed mixed findings and 24/67 (35.8%) found limited or no evidence of effectiveness. Of the 11 papers reporting peer educator outcomes, 4/11 (36.4%) showed evidence of effectiveness, 2/11 (18.2%) showed mixed findings and 5/11 (45.5%) showed limited or no evidence of effectiveness. Study quality varied greatly with many studies rated as poor quality, mainly due to unrepresentative samples and incomplete data. Discussion School-based peer education interventions are implemented worldwide and span a wide range of health areas. A number of interventions appear to demonstrate evidence for effectiveness, suggesting peer education may be a promising strategy for health improvement in schools. Improvement in health-related knowledge was most common with less evidence for positive health behaviour change. In order to quantitatively synthesise the evidence and make more confident conclusions, there is a need for more robust, high-quality evaluations of peer-led interventions using standardised health knowledge and behaviour measures.
Background Emotional disorders in young people are increasing but studies have found that this age group do not always recognise the signs and symptoms of mental health problems in themselves or others. The Mental Health Foundation’s school-based Peer Education Project (PEP) has the potential to improve young people’s understanding of their own mental health at a critical developmental stage (early adolescence) using a peer teaching method. This study is a process evaluation to understand: the mechanisms through which PEP might improve young people’s mental health literacy, any challenges with delivery, how the project can be embedded within wider school life and how it can be improved to be of most benefit to the widest number of young people. We will also validate a bespoke mental health literacy questionnaire, and test the feasibility of using it to measure outcomes in preparation for a future study evaluating effectiveness. Methods All schools recruited to the study will receive the PEP intervention. The process evaluation will be informed by realist evaluation approaches to build understanding regarding key mechanisms of change and the impact of different school contexts. The evaluation will test and revise an existing intervention logic model which has been developed in partnership with the Mental Health Foundation. Process evaluation data will be collected from newly recruited schools ( n = 4) as well as current PEP user schools ( n = 2) including training and lesson delivery observations, staff interviews and student focus groups. Baseline and follow-up data will be collected in all newly recruited intervention schools ( n = 4) from all students in Year 7/8 (who receive the PEP) and recruited peer educators in Year 12 via a self-report survey. Discussion This study will enable us to refine the logic model underpinning the peer education project and identify areas of the intervention that can be improved. Findings will also inform the design of a future effectiveness study which will test out the extent to which PEP improves mental health literacy.
Background: Innovative service models to facilitate end-of-life care for older people may be required to enable and bolster networks of care. The aim of this study was to understand how and why a new charitably funded service model of end-of-life care impacts upon the lives of older people. Methods: A multiple exploratory qualitative case study research strategy. Cases were 3 sites providing a new end-oflife service model for older people. The services were provided in community settings, primarily providing support in peoples own homes. Study participants included the older people receiving the end-of-life care service, their informal carers, staff providing care within the service and other stakeholders. Data collection included individual interviews with older people and informal carers at 2 time points, focus group interviews with staff and local stakeholders, nonparticipant observation of meetings, and a final cross-case deliberative panel discussion workshop. Framework analysis facilitated analysis within and across cases. Results: Twenty-three service users and 5 informal carers participated in individual interviews across the cases. Two focus groups were held with an additional 12 participants, and 19 people attended the deliberative panel workshop. Important elements contributing to the experience and impacts of the service included organisation, where services felt they were ‘outsiders,’ the focus of the services and their flexible approach; and the impacts particularly in enriching relationships and improving mental health. Conclusion: These end-of-life care service models operated in a space between the healthcare system and the person’s life world. This meant there could be ambiguity around their services, where they occupied a liminal, but important, space. These services are potentially important to older people, but should not be overly constrained or they may lose the very flexibility that enables them to have impact.
ContextSupplementary support services in palliative care for older people are increasingly common, but with neither recommended tools to measure outcomes nor reviews synthesizing anticipated outcomes. Common clinically focused tools may be less appropriate.ObjectivesTo identify stakeholder perceptions of key outcomes from supplementary palliative care support services, then map these onto outcome measurement tools to assess relevance and item redundancy.MethodsA scoping review using the design by Arksey and O'Malley. EMBASE, CINAHL, MEDLINE, and PSYCHinfo searched using terms relating to palliative care, qualitative research, and supplementary support interventions. Articles were imported into Endnote™, and Covidence™ was used by two reviewers to assess against inclusion criteria. Included articles were imported into NVivo™ and thematically coded to identify key concepts underpinning outcomes. Each item within contender outcome measurement tools was assessed against each concept.ResultsSixty included articles focused on advance care planning, guided conversations, and volunteer befriending services. Four concepts were identified: enriching relationships; greater autonomy and perceived control; knowing more; and improved mental health. Mapping concepts to contender tool items revealed issues of relevance and redundancy. Some tools had no redundant items but mapped only to two of four outcome themes; others mapped to all concepts, but with many redundant questions. Tools such as ICECAP-Supportive Care Measure and McGill Quality of Life had high relevance and low redundancy.ConclusionPertinent outcome concepts for these services and population are not well represented in commonly used outcome measurement tools, and this may have implications in appropriately measuring outcomes. This review and mapping method may have utility in fields where selecting appropriate outcome tools can be challenging.
BACKGROUNDCough both protects and clears the airway. Cough has three phases: breathing in (inspiration), closure of the glottis, and a forced expiratory effort. Chronic cough has a negative, far-reaching impact on quality of life. Few effective medical treatments for individuals with unexplained (idiopathic/refractory) chronic cough (UCC) are known. For this group, current guidelines advocate the use of gabapentin. Speech and language therapy (SLT) has been considered as a non-pharmacological option for managing UCC without the risks and side effects associated with pharmacological agents, and this review considers the evidence from randomised controlled trials (RCTs) evaluating the effectiveness of SLT in this context.OBJECTIVESTo evaluate the effectiveness of speech and language therapy for treatment of people with unexplained (idiopathic/refractory) chronic cough.SEARCH METHODSWe searched the Cochrane Airways Trials Register, CENTRAL, MEDLINE, Embase, CINAHL, trials registries, and reference lists of included studies. Our most recent search was 8 February 2019.SELECTION CRITERIAWe included RCTs in which participants had a diagnosis of UCC having undergone a full diagnostic workup to exclude an underlying cause, as per published guidelines or local protocols, and where the intervention included speech and language therapy techniques for UCC.DATA COLLECTION AND ANALYSISTwo review authors independently screened the titles and abstracts of 94 records. Two clinical trials, represented in 10 study reports, met our predefined inclusion criteria. Two review authors independently assessed risk of bias for each study and extracted outcome data. We analysed dichotomous data as odds ratios (ORs), and continuous data as mean differences (MDs) or geometric mean differences. We used standard methods recommended by Cochrane. Our primary outcomes were health-related quality of life (HRQoL) and serious adverse events (SAEs).MAIN RESULTSWe found two studies involving 162 adults that met our inclusion criteria. Neither of the two studies included children. The duration of treatment and length of sessions varied between studies from four sessions delivered weekly, to four sessions over two months. Similarly, length of sessions varied slightly from one 60-minute session and three 45-minute sessions to four 30-minute sessions. The control interventions were healthy lifestyle advice in both studies.One study contributed HRQoL data, using the Leicester Cough Questionnaire (LCQ), and we judged the quality of the evidence to be low using the GRADE approach. Data were reported as between-group difference from baseline to four weeks (MD 1.53, 95% confidence interval (CI) 0.21 to 2.85; participants = 71), revealing a statistically significant benefit for people receiving a physiotherapy and speech and language therapy intervention (PSALTI) versus control. However, the difference between PSALTI and control was not observed between week four and three months. The same study provided information on SAEs, and there were no SAEs in either the PSALTI or control arms. Using the GRADE approach we judged the quality of evidence for this outcome to be low.Data were also available for our prespecified secondary outcomes. In each case data were provided by only one study, therefore there were no opportunities for aggregation; we judged the quality of this evidence to be low for each outcome. A significant difference favouring therapy was demonstrated for: objective cough counts (ratio for mean coughs per hour on treatment was 59% (95% CI 37% to 95%) relative to control; participants = 71); symptom score (MD 9.80, 95% CI 4.50 to 15.10; participants = 87); and clinical improvement as defined by trialists (OR 48.13, 95% CI 13.53 to 171.25; participants = 87). There was no significant difference between therapy and control regarding subjective measures of cough (MD on visual analogue scale of cough severity: -9.72, 95% CI -20.80 to 1.36; participants = 71) and cough reflex sensitivity (capsaicin concentration to induce five coughs: 1.11 (95% CI 0.80 to 1.54; participants = 49) times higher on treatment than on control). One study reported data on adverse events, and there were no adverse events reported in either the therapy or control arms of the study.AUTHORS' CONCLUSIONSThe paucity of data in this review highlights the need for more controlled trial data examining the efficacy of SLT interventions in the management of UCC. Although a large number of studies were found in the initial search as per protocol, we could include only two studies in the review. In addition, this review highlights that endpoints vary between published studies.The improvements in HRQoL (LCQ) and reduction in 24-hour cough frequency seen with the PSALTI intervention were statistically significant but short-lived, with the between-group difference lasting up to four weeks only. Further studies are required to replicate these findings and to investigate the effects of SLT interventions over time. It is clear that SLT interventions vary between studies. Further research is needed to understand which aspects of SLT interventions are most effective in reducing cough (both objective cough frequency and subjective measures of cough) and improving HRQoL. We consider these endpoints to be clinically important. It is also important for future studies to report information on adverse events.Because of the paucity of data, we can draw no robust conclusions regarding the efficacy of SLT interventions for improving outcomes in unexplained chronic cough. Our review identifies the need for further high-quality research, with comparable endpoints to inform robust conclusions.
Context. Trends in symptoms and functional ability are known toward the end of life, but less is understood about quality of life, particularly prospectively following service referral. Objectives. This study compares quality of life trajectories of people with and without cancer, referred to volunteerprovided palliative care services. Methods. A secondary analysis of the ELSA trial (n = 85 people with cancer and n = 72 without cancer) was performed. Quality of life data (WHOQOL-BREF) were collected at baseline (referral), four weeks, eight weeks, and 12 weeks. Sociodemographic data were collected at baseline. We specified a series of joint models to estimate differences on quality of life trajectories between groups adjusting for participants who die earlier in the study. Results. People with cancer had a significantly better quality of life at referral to the volunteer-provided palliative care services than those with nonmalignant disease despite similar demographic characteristics (Cohen d's = 0.37 to 0.45). More people with cancer died during the period of the study. We observed significant differences in quality of life physical and environmental domain trajectories between groups (b = -2.35, CI -4.49, -0.21, and b = -4.11, CI -6.45, -1.76). People with cancer experienced a greater decline in quality of life than those with nonmalignant disease. Conclusion. Referral triggers for those with and without cancer may be different. People with cancer can be expected to have a more rapid decline in quality of life from the point of service referral. This may indicate greater support needs, including from volunteer-provided palliative care services. (C) 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
To explore the perspectives of people anticipated to be in their last year of life, family carers, volunteers and staff on the impacts of receiving a volunteer-provided befriending service. Patient participants received up to 12 weeks of a volunteer-provided befriending intervention. Typically, this involved one visit per week from a trained volunteer. Such services complement usual care and are hoped to enhance quality of life. Multiple case study design (n = 8). Cases were end-of-life befriending services in home and community settings including UK-based hospices (n = 6), an acute hospital (n = 1) and a charity providing support to those with substance abuse issues (n = 1). Data collection incorporated qualitative thematic interviews, observation and documentary analysis. Framework analysis facilitated within and across case pattern matching. Eighty-four people participated across eight sites (cases), including patients (n = 23), carers (n = 3), volunteers (n = 24) and staff (n = 34). Interview data are reported here. Two main forms of input were described-'being there' and 'doing for'. 'Being there' encapsulated the importance of companionship and the relational dynamic between volunteer and patient. 'Doing for' described the process of meeting social needs such as being able to leave the house with the volunteer. These had impacts on wellbeing with people describing feeling less lonely, isolated, depressed and/or anxious. Impacts from volunteer befriending or neighbour services may be achieved through volunteers taking a more practical/goal-based orientation to their role and/or taking a more relational and emotional orientation. Training of volunteers must equip them to be aware of these differing elements of the role and sensitive to when they may create most impact. ISRCTN12929812.
Background The Hospice UK report ‘Research in palliative care’ has led to an increase in hospices wanting to become more research active. However, to do this they often need a research project to catalyse this, and ideally support from palliative care research institutions. Aim To report on the research experiences of 11 palliative care units who were partners in a randomised trial of befriending services Methods A wait-list controlled trial with nested qualitative case studies investigating volunteer delivered befriending services across 11 sites. Patients (n = 195) were estimated to be in their last year of life and randomly allocated to receive the befriending intervention immediately or after a four week wait. We report on the skills developed by non-clinical hospice staff who were responsible for site trial management and informed consent procedures. Results Training for this role included innovative face-to-face role play workshops, access to good clinical practice education, and virtual site visits to check procedural compliance and address concerns. Trial initiation issues included acknowledging site staff design concerns and involving them in developing the trial protocol, documentation and research procedures. Areas that required acknowledgement and response during the trial included providing support to address issues of informed consent and eligibility, understanding the impact of the ‘wait’ allocation on participants, staff and volunteers, and integrating volunteer management and feedback into trial procedures. At subsequent feedback sessions, staff moved from being research naive to research active making recommendations about the design of future studies. Conclusions For most this was the first time they had been involved in research yet they embraced this and developed research skills for future studies. The trial acted as a catalyst for training of staff who were able to contribute to running a rigorous and ethical wait-list trial. Funded by the UK Cabinet Office.
Background Many innovations in palliative care are commenced without robust research to understand either their impact, nor explore the processes, barriers and facilitators to effective implementation of the service. Within the hospice sector there are an increasing number of volunteer befriending or good neighbour services, and evidence is needed on how best to provide these to improve outcomes. Aim To make evidence based recommendations on how to deliver effective volunteer befriending services at the end of life. Methods A wait-list controlled trial (ELSA) (with eight nested qualitative case studies) testing volunteer delivered befriending services across 11 hospice, charity and NHS sites. Participants were estimated to be in their last year of life, randomly allocated to receive the befriending intervention immediately or after a four week wait. Data collection at baseline, four, eight weeks assessed patient's quality of life, loneliness and social support. The case studies included in-depth qualitative interviews with staff, volunteers, patients and family carers. ISRCTN 12929812. Results 195 people entered the trial, and interviews were conducted across eight case study sites with volunteers (n = 23), staff (n = 31), patients (n = 24) and family carers (n = 3). Key issues include strategies for maximising impact (e.g. frequency and length of visits, type of support provided, targeting patients), the precise nature of the volunteer role (social or practical, in home or getting out and about), effective running of the service (e.g. how to match volunteer and patient, supporting volunteers), and managing the different nature of a volunteer delivered service(e.g. volunteer training, negotiating boundary issues). Conclusions We will provide evidence based recommendations on how to run a high quality volunteer befriending or good neighbour service in an effective, safe and well managed way which is likely to maximise impact. Funded by the UK Cabinet Office. See also oral presentation on volunteer befriending services on page (A6).