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Objectives We report on the experiences of peer support facilitators and study nurses who participated in a large trial of peer support for type 2 diabetes. The support was led by volunteer peer support facilitators, who were trained in overcoming barriers to diabetes care, motivational interviewing, listening skills and setting up and running group support sessions. There is currently a distinct lack of qualitative evidence on what works in peer support. Methods The peer support facilitators and study nurses completed open-answer questionnaire items on what worked well and less well, problems encountered and how they were resolved, group dynamics and suggestions for improvement. We also collected data from end-of-study meetings. Inductive thematic analysis was used to allow the emergent themes to be strongly based in the data. Findings: We find that process factors, peer support facilitator and peer characteristics, their relationships with each other and group dynamics are all fundamental for effective peer support. Sustaining and ending support also emerged as a key theme. Discussion Given the increasing interest in peer support, these findings will be useful to those interested in running groups in the future. Training programmes should help peer support facilitators develop confidence whilst emphasising that peer support ideally entails an equal, democratic dynamic. More attention is needed on to how to end groups appropriately.

Purpose 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. Methods 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. Results 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. Conclusion 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. Trial Registration ISRCTN12929812

Current demographic, policy and management changes are a challenge to hospices to develop their volunteering practices. The study upon which this paper is based aimed to explore good practice in volunteer involvement and identify ways of improving care through developing volunteering. The project consisted of a narrative literature review; a survey of volunteer managers; and organisational case studies selected through purposive diversity sampling criteria. A total of 205 staff, volunteers, patients and relatives were interviewed across 11 sites in England in 2012. This article focuses on one of the findings – the place that volunteers occupy between the hospice and the community beyond its walls. External changes and pressures in society were impacting on volunteer management, but were viewed as requiring a careful balancing act to retain the ‘spirit’ of the hospice philosophy. Honouring the developmental history of the hospice was vital to many respondents, but viewed less positively by those who wished to modernise. Hospices tend to be somewhat secluded organisations in Britain, and external links and networks were mostly within the end‐of‐life care arena, with few referring to the wider volunteering and community fields. Volunteers were seen as an informal and symbolic ‘link’ to the local community, both in terms of their ‘normalising’ roles in the hospice and as providing a two‐way flow of information with the external environment where knowledge of hospice activities remains poor. The diversity of the community is not fully represented among hospice volunteers. A few hospices had deliberately tried to forge stronger interfaces with their localities, but these ventures were often controversial. The evidence suggests that there is substantial scope for hospices to develop the strategic aspects of volunteering through greater community engagement and involvement and by increasing diversity and exploiting volunteers' ‘boundary’ position more systematically to educate, recruit and raise awareness.

Compassionate support at the end of life should not be the responsibility of health and social care professionals alone and requires a response from the wider community. Volunteers, as community members, are a critical part of many end-of-life care services. The impact of their services on important outcomes such as quality of life is currently poorly understood. The purpose of this study is to evaluate a series of social action initiatives which use volunteers to deliver befriending services to people anticipated to be in their last year of life. The aim is to determine if receiving care from a social action volunteer befriending service plus usual care significantly improves quality of life in the last year of life. The research questions will be addressed through a wait-list randomised controlled trial (WLRCT) and qualitative case study evaluation across 12 sites in England. Participants will be randomly allocated to either receive the social action volunteer befriending service straight away or receive the intervention after a four week wait (wait-list arm). The impact of the intervention on end-of-life experience (quality of life as primary outcome, loneliness, social support) will be measured. Repeated assessments will be carried out at baseline and weeks 4 and 8 for the intervention arm and weeks 4, 8 and 12 for the wait-list arm. For selected sites case study evaluation will include interviews, observation and documentary analysis to understand the mechanisms underpinning any found impact. This study will address the need to both provide services which use social action models to support end-of-life care in community settings, and to robustly evaluate these models to determine if they influence the experience of end-of-life care. Such services could work to reduce isolation, help meet emotional needs and maintain a sense of connectedness to the community. ISRCTN 12929812 Registered 20.5.15

Background Volunteer provided befriending or good neighbour services are an increasingly common element of hospice provision. However little is known about who accesses such services, nor their impact. The ELSA study is a large trial of volunteer befriending services across England, with an aim of evaluating the effectiveness of receiving care. Aim To report data on who was referred to and used the befriending services provided as part of this trial. Methods A wait-list controlled trial (ELSA) with nested qualitative case studies, with patients randomly allocated to intervention (immediate receipt of volunteering intervention) or wait list arm (four week wait for intervention). Patients (estimated to be in their last year of life) referred to volunteer befriending services across 11 end of life care providers in England. Trial data were collected at baseline, 4, 8 (12) weeks to explore quality of life as our primary outcome, with loneliness and social support as secondary outcomes. Baseline data were collected on personal characteristics and social networks. Trial registered: ISRCTN 12929812 Results Service referrals (n = 369) resulted in 195 people entering the study. Patients mean age 72 years, 61% female, 84% retired, 58% living alone, 90% white ethnicity, 50% with cancer. No significant differences on quality of life at baseline were observed between genders, but as age increases, scores on social, psychological and environmental sub scales worsen (ps. Conclusion This study is the first to examine volunteer befriending in a trial context, and describe the characteristics of those receiving care. Services appear appropriately targeted to vulnerable older adults who live alone, and potentially accessed by a wider range of people than other hospice services. Funded by the UK Cabinet Office. See also poster presentation #205.

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).

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 Compassionate support at the end of life should not be the responsibility of health and social care professionals alone and requires a response from the wider community. Volunteers, as community members, are a critical part of many end-of-life care services. The impact of their services on important outcomes such as quality of life is currently poorly understood. The purpose of this study is to evaluate a series of social action initiatives which use volunteers to deliver befriending services to people anticipated to be in their last year of life. The aim is to determine if receiving care from a social action volunteer befriending service plus usual care significantly improves quality of life in the last year of life. Methods/design The research questions will be addressed through a wait-list randomised controlled trial (WLRCT) and qualitative case study evaluation across 12 sites in England. Participants will be randomly allocated to either receive the social action volunteer befriending service straight away or receive the intervention after a four week wait (wait-list arm). The impact of the intervention on end-of-life experience (quality of life as primary outcome, loneliness, social support) will be measured. Repeated assessments will be carried out at baseline and weeks 4 and 8 for the intervention arm and weeks 4, 8 and 12 for the wait-list arm. For selected sites case study evaluation will include interviews, observation and documentary analysis to understand the mechanisms underpinning any found impact. Discussion This study will address the need to both provide services which use social action models to support end-of-life care in community settings, and to robustly evaluate these models to determine if they influence the experience of end-of-life care. Such services could work to reduce isolation, help meet emotional needs and maintain a sense of connectedness to the community. ISRCTN 12929812 Registered 20.5.15

This Handbook focuses primarily on volunteering in and the operations of associations. Because some other topics are sufficiently relevant and important, however, the Handbook covers them as well. Volunteer service programs (VSPs) is one such subject. Although VSPs are rarely found in associations, these efforts are included in the Handbook because they engage a multitude of volunteers and illustrate important facets and contexts of volunteer involvement.

Background: Volunteers are integral to the history of hospices and continue to play a vital role. However, economic, policy and demographic challenges in the twenty-first century raise questions about how best to manage this essential resource. Aim: This narrative review explores the recent literature on end-of-life care volunteering and reflects upon the issues pertinent to current organisational challenges and opportunities. Design: The parameters of the review were set deliberately wide in order to capture some of the nuances of contemporary volunteer practices. Articles reporting on research or evaluation of adult end-of-life care services (excluding prison services) that use volunteers and were published in English between 2000 and 2011 were included. Data sources: Seven electronic databases, key journals and grey literature databases. Results: Sixty-eight articles were included in the analysis. The articles were drawn from an international literature, while acknowledging that volunteer roles vary considerably by organisation and/or by country and over time. The majority of articles were small in scale and diverse in methodology, but the same topics repeatedly emerged from both the qualitative and quantitative data. The themes identified were individual volunteer factors (motivation, characteristics of volunteers, stress and coping, role boundaries and value) and organisational factors (recruiting for diversity, support and training and volunteers’ place in the system). Conclusions: The tensions involved in negotiating the boundary spaces that volunteers inhabit, informality and regulation, diversity issues and the cultural specificity of community models, are suggested as topics that merit further research and could contribute to the continuing development of the volunteer workforce.

Worldwide, the demand for specialist palliative care is increasing but funding is limited. The role of volunteers is underresearched, although their contribution reduces costs significantly. Understanding what volunteers do is vital to ensure services develop appropriately to meet the challenges faced by providers of palliative care.The study's objective is to describe current involvement of volunteers with direct patient/family contact in U.K. specialist palliative care.An online survey was sent to 290 U.K. adult hospices and specialist palliative care services involving volunteers covering service characteristics, involvement and numbers of volunteers, settings in which they are involved, extent of involvement in care services, specific activities undertaken in each setting, and use of professional skills.The survey had a 67% response rate. Volunteers were most commonly involved in day care and bereavement services. They entirely ran some complementary therapy, beauty therapy/hairdressing, and pastoral/faith-based care services, and were involved in a wide range of activities, including sitting with dying patients.This comprehensive survey of volunteer activity in U.K. specialist palliative care provides an up-to-date picture of volunteer involvement in direct contact with patients and their families, such as providing emotional care, and the extent of their involvement in day and bereavement services. Further research could focus on exploring their involvement in bereavement care.

Introduction Social isolation is common in patients with psychosis and associated with a number of negative outcomes. Programmes in which volunteers provide one-to-one support—often referred to as befriending—have been reputed to achieve favourable outcomes. However, trial-based evidence for their effectiveness is limited. Methods and analysis This is a randomised controlled trial comparing the effects of one-to-one volunteer support with an active control condition for patients with psychosis over a 1-year period. Patients in the intervention group will receive the support of a volunteer for 1 year, who will meet them weekly and engage them in social and recreational activities. Patients in the control group will not receive support from a volunteer. In both groups, patients will be given a booklet detailing locally available social activities and otherwise receive treatment as usual. Patients, volunteers, clinicians and researchers involved in the delivery of the intervention will not be blinded to group assignment, while researchers carrying out data collection will be blinded. Data collection will be conducted at baseline, at 6 and 12 months. The primary outcome is the amount of time spent engaging in social activities per day. Secondary outcomes include symptoms, quality of life, self-esteem and costs of care. Attitudes of volunteers towards mentally ill people will be assessed. Finally, in-depth interviews will be conducted with patients and volunteers. Ethics and dissemination The study has been approved by the National Research Ethics Service (NRES) Committee London—Camden & Kings Cross (reference 15/LO/0674). The findings of the trial will be published in open access peer-reviewed journals and in the National Institute for Health Research (NIHR) journals library, and presented at scientific conferences. In addition, findings will be summarised for a lay audience and circulated to all relevant National Health Service (NHS) and voluntary organisations. Trial registration number ISRCTN14021839; Pre-results .

Clinical care alone at the end of life is unlikely to meet all needs. Volunteers are a key resource, acceptable to patients, but there is no evidence on care outcomes. This study aimed to determine whether support from a social action volunteer service is better than usual care at improving quality of life for adults in the last year of life. A pragmatic, multi-centre wait-list controlled trial, with participants randomly allocated to receive the volunteer support intervention either immediately or after a 4 week wait. Trained volunteers provided tailored face-to-face support including befriending, practical support and signposting to services, primarily provided within the home, typically for 2–3 hours per week. The primary outcome was rate of change of quality of life at 4 weeks (WHO QOL BREF, a general, culturally sensitive measure). Secondary outcomes included rate of change of quality of life at 8 weeks and Loneliness (De Jong Gierveld Loneliness Scale), social support (mMOS-SS), and reported use of health and social care services at 4 and 8 weeks. In total, 196 adults (61% (n = 109) female; mean age 72 years) were included in the study. No significant difference was found in main or secondary outcomes at 4 weeks. Rate of change of quality of life showed trends in favour of the intervention (physical quality of life domain: b = 3.98, CI, –0.38 to 8.34; psychological domain: b = 2.59, CI, –2.24 to 7.43; environmental domain: b = 3, CI, –4.13 to 4.91). Adjusted analyses to control for hours of volunteer input found significantly less decrease in physical quality of life in the intervention group (slope (b) 4.43, CI, 0.10 to 8.76). While the intervention also favoured the rate of change of emotional (b = –0.08; CI, –0.52 to 0.35) and social loneliness (b = –0.20; CI, –0.58 to 0.18), social support (b = 0.13; CI, –0.13 to 0.39), and reported use of health and social care professionals (b = 0.16; CI, –0.22 to 0.55), these were not statistically significant. No adverse events were reported. Clinicians can confidently refer to volunteer services at the end of life. Future research should focus on ‘dose’ to maximise likely impact. The trial was prospectively registered. ISRCTN Registry: ISRCTN12929812 , registered 20 May 2015.