Developing a best-practice agenda for music therapy research to support informal carers of terminally ill patients pre- and post-death bereavement: a world café approach.

BACKGROUND: Informal carers of terminally ill patients play a vital role in providing palliative care at home, which impacts on their pre- and post-death bereavement experience and presents an up to 50% greater risk for mental-health problems. However, developing and implementing effective bereavement support remains challenging. There is a need to build the evidence base for music therapy as a potentially promising bereavement support for this vulnerable population. This study aimed to co-design an international best practice agenda for research into music therapy for informal carers of patients pre- and post-death bereavement. METHODS: Online half day workshop using a World Café approach; an innovative method for harnessing group intelligence within a group of international expert stakeholders (music therapy clinicians and academics with experience of music therapy with informal carers at end-of-life). Demographics, experience, key priorities and methodological challenges were gathered during a pre-workshop survey to inform workshop discussions. The online workshop involved four rounds of rotating, 25-minute, small group parallel discussions using Padlet. One final large group discussion involved a consensus building activity. All data were analysed thematically to identify patterns to inform priorities and recommendations. RESULTS: Twenty-two consented and completed the pre-event survey (response rate 44%), from countries representing 10 different time zones. Sixteen participated in the workshop and developed the following best practice agenda. The effectiveness of music therapy in supporting informal carers across the bereavement continuum should be prioritised. This should be done using a mixed methods design to draw on the strengths of different methodological approaches to building the evidence base. It should involve service users throughout and should use a core outcome set to guide the choice of clinically important bereavement outcome measures in efficacy/effectiveness research. CONCLUSIONS: Findings should inform future pre- and post-death bereavement support research for informal caregivers of terminally ill patients. This is an important step in building the evidence base for commissioners and service providers on how to incorporate more innovative approaches in palliative care bereavement services.

Integrated palliative care in oncology: a protocol for a realist synthesis.

INTRODUCTION: Emerging evidence suggests improved quality of life, reduced symptom burden and lower health services costs when integrated palliative care and cancer care are implemented. Integrated palliative care aims to achieve care continuity by integrating organisational, administrative and clinical services involved in patient care networks. However, integrated palliative care for cancer is not common practice. This project, therefore, aims to understand how integrated palliative care and cancer care works in different healthcare settings (inpatient/outpatient), and for which groups of people (at what stage of the cancer journey), so we can develop guidance for optimal delivery. METHODS AND ANALYSIS: We will conduct a realist synthesis to develop a programme theory of how integrated palliative care in cancer works, for whom and in what contexts to achieve improved symptom management and quality of life for patients and their families.This realist synthesis will follow the five stages outlined by Pawson: (1) locating existing theories, (2) searching for evidence, (3) article selection, (4) extracting and organising data and (5) synthesising the evidence and drawing conclusions. We will work closely with our expert stakeholder group, which includes health and social care professionals providing palliative care and oncology; management and policy groups and members of the public and patients. We will adhere to RAMESES quality standards for undertaking a realist synthesis. ETHICS AND DISSEMINATION: Ethics approval for this project is not required.The realist synthesis will develop a programme theory that provides clarity on the optimal delivery of palliative care for adults with cancer. We will use the programme theory to coproduce guidance and user-friendly outputs, working with stakeholders to inform delivery of best practice. Findings will inform further research in integrated palliative care and cancer. Stakeholder engagement will assist in the dissemination of our findings. PROSPERO REGISTRATION NUMBER: CRD42023389791.

Integrating palliative care and heart failure: a systematic realist synthesis (PalliatHeartSynthesis).

OBJECTIVES: (1) Develop a programme theory of why, for whom and in what contexts integrated palliative care (PC) and heart failure (HF) services work/do not work; (2) use the programme theory to co-produce with stakeholders, intervention strategies to inform best practice and future research. METHODS: A systematic review of all published articles and grey literature using a realist logic of analysis. The search strategy combined terms significant to the review questions: HF, PC and end of life. Documents were included if they were in English and provided data relevant to integration of PC and HF services. Searches were conducted in November 2021 in EMBASE, MEDLINE, PsycINFO, AMED, HMIC and CINAHL. Further relevant documents were identified via monthly alerts (up until April 2023) and the project stakeholder group (patient/carers, content experts and multidisciplinary practitioners). RESULTS: 130 documents were included (86 research, 22 literature reviews, 22 grey literature). The programme theory identified intervention strategies most likely to support integration of PC and HF services. These included protected time for evidence-based PC and HF education from undergraduate/postgraduate level and continuing professional practice; choice of educational setting (eg, online, face-to-face or hybrid); increased awareness and seeing benefits of PC for HF management; conveying the emotive and intellectual need for integrating PC and HF via credible champions; and prioritising PC and HF guidelines in practice. CONCLUSIONS: The review findings outline the required steps to take to increase the likelihood that all key players have the capacity, opportunity and motivation to integrate PC into HF management. PROSPERO REGISTRATION NUMBER: CRD42021240185.

Co-Designing a Strategy for Implementing the SPARC Holistic Needs Assessment Tool in the Colombian Clinical Context.

In Colombia, timely access to palliative care (PC) is hampered by difficulties in identifying and referring to necessary services. The SPARC (Sheffield Profile for Assessment and Referral for Care) instrument provides a holistic needs assessment to improve referrals for different forms of care. SPARC was recently validated in Colombian Spanish (SPARC-Sp) but has not yet been implemented in clinical practice. We undertook workshops that aimed to co-design an implementation strategy to inform a future trial testing SPARC-Sp in the Colombian healthcare system. Workshop attendees included patients, informal caregivers, healthcare professionals, volunteers, administrative staff and decision makers. Discussions within the workshops refined implementation and dissemination strategies for SPARC-Sp in practical scenarios. Results include the need for education, clarification and demystification of PC and the lack of time and skills of professionals to identify patients' needs. Attendees recognized SPARC-Sp as a valuable tool for highlighting patients' concerns, whose adaptations are needed in Colombia to address the low literacy of the population and specificities of the healthcare system. We proposed local adaptations to SPARC-Sp and produced five educational videos aimed at health professionals, patients and caregivers to strengthen understanding of holistic needs in PC while building a strategy for SPARC-Sp implementation in the Colombian context.

Barriers and facilitators to palliative care for patients with non-curable cancer in Colombia: perspectives of allied health and social care professionals.

BACKGROUND: Palliative care aims to improve the quality of life of people with life-limiting illness and their families by addressing physical, psychological, social and spiritual suffering. Allied Health and Social Care Professionals (AHSCP) are key to delivering comprehensive, high quality palliative care. In recent years, Colombia has developed changes in the legal, and regulatory framework for access to palliative care but barriers and facilitators to palliative care for patients with non-curable cancer have not been explored from the perspective of AHSCP. METHOD: This study aims to address this knowledge gap in two cities in Colombia: one in a medium-sized city in a rural area (Popayan) and one in a highly urbanized area (Bogota). Two focus groups with AHSCP were conducted using the World Cafe method, and a subsequent thematic analysis was performed to establish the main barriers and facilitators. RESULTS: A wide range of 18 AHSCPs attended the two World Cafe groups in Popayan and Bogota. As a result of this iterative process, we established five thematic areas: (i) Humanizing care, (ii) Normalizing palliative care: referral at the time of diagnosis, (iii) Misunderstandings related to palliative care, (iv) Barriers within the health system, and (v) Geographic barriers. CONCLUSION: This study provided the perspectives of AHSCPs in Colombia in relation to barriers and facilitators in the framework of comprehensive palliative care attention. Participants identified misconceptions about palliative care, which are explained by the lack of inclusion of this area in the educational programs of health professionals and AHSCPs, along with the limited supply and access to palliative care, especially in rural areas.

'That just doesn't feel right at times' - lone working practices, support and educational needs of newly employed Healthcare Assistants providing 24/7 palliative care in the community: A qualitative interview study.

BACKGROUND: Healthcare assistants working in hospice at home settings have a pivotal role in supporting people dying at home and their family caregivers. Some healthcare assistants are working alone in patients' homes, which magnifies some of the issues reported for those working closely with other team members. There is a dearth of evidence in terms of education, training and support needs for healthcare assistants when working alone. AIM: To explore the role of newly employed lone working healthcare assistants delivering palliative care in the community, and their support and educational needs. DESIGN: Qualitative exploratory study using semi-structured interviews. SETTING/PARTICIPANTS: Healthcare assistants (n = 16) employed less than 12 months by a national non-profit hospice and palliative care provider located across the UK. RESULTS: Analysis of interviews identified three main themes: (1) Healthcare assistants have a unique and complex role catering for holistic needs of patients and their family caregivers in the home environment; (2) preparation for the complex role requires focus on experiential learning and specific training to support holistic care provision; (3) lone workers experience loneliness and isolation and identify peer support as a key intervention to support their wellbeing. CONCLUSIONS: Given the complexities of their role within community palliative care teams, there are key learning points in relation to healthcare assistant preparation. Education and support networks should be prioritised to reduce isolation and support ongoing learning and development of newly employed healthcare assistants; all of which is vital to ensure safety and quality of care for the growing number of people they support in the community.

Out-of-hours community palliative care: a national survey of hospice providers.

BACKGROUND: Community-based palliative out-of-hours services operate outside normal working hours. However, little is known about the provision and delivery of such care. AIM: The aim of this study was to describe types of provision and delivery of out-of-hours palliative care services provided by UK hospices. METHODS: Survey questionnaires were emailed to 150 adult hospices in the UK. Quantitative data were analysed using SPSS and qualitative data subjected to thematic analysis. FINDINGS: Responding hospices (n=57) provided the following types of support: telephone advice 72% (n=41); care at home 70% (n=40); and rapid response 35% (n=20). There were variations between services regarding referral mechanisms, availability and workforce, and integration with statutory services was limited. CONCLUSION: Variation in the type of provision and delivery of out-of-hours palliative care services alongside limited integration with statutory care have contributed to inequity of access to community-based palliative care, and potentially suboptimal patient and informal caregiver outcomes.

Communication of palliative care needs in discharge letters from hospice providers to primary care: a multisite sequential explanatory mixed methods study.

BACKGROUND: The provision of palliative care is increasing, with many people dying in community-based settings. It is essential that communication is effective if and when patients transition from hospice to community palliative care. Past research has indicated that communication issues are prevalent during hospital discharges, but little is known about hospice discharges. METHODS: An explanatory sequential mixed methods study consisting of a retrospective review of hospice discharge letters, followed by hospice focus groups, to explore patterns in communication of palliative care needs of discharged patients and describe why these patients were being discharged. Discharge letters were extracted for key content information using a standardised form. Letters were then examined for language patterns using a linguistic methodology termed corpus linguistics. Thematic analysis was used to analyse the focus group transcripts. Findings were triangulated to develop an explanatory understanding of discharge communication from hospice care. RESULTS: We sampled 250 discharge letters from five UK hospices whereby patients had been discharged to primary care. Twenty-five staff took part in focus groups. The main reasons for discharge extracted from the letters were symptoms "managed/resolved" (75.2%), and/or the "patient wishes to die/for care at home" (37.2%). Most patients had some form of physical needs documented on the letters (98.4%) but spiritual needs were rarely documented (2.4%). Psychological/emotional needs and social needs were documented in 46.4 and 35.6% of letters respectively. There was sometimes ambiguity in "who" will be following up "what" in the discharge letters, and whether described patients' needs were resolved or ongoing for managing in the community setting. The extent to which patients received a copy of their discharge letter varied. Focus groups conveyed a lack of consensus on what constitutes "complexity" and "complex pain". CONCLUSIONS: The content and structure of discharge letters varied between hospices, although generally focused on physical needs. Our study provides insights into patterns associated with those discharged from hospice, and how policy and guidance in this area may be improved, such as greater consistency of sharing letters with patients. A patient-centred set of hospice-specific discharge letter principles could help improve future practice.

'There's something about admitting that you are lonely' - prevalence, impact and solutions to loneliness in terminal illness: An explanatory sequential multi-methods study.

BACKGROUND: Loneliness is a prevalent societal issue and can impact on a person's physical and mental health. It is unclear how loneliness impacts on end of life experiences or how such feelings can be alleviated. AIM: To explore the perceived prevalence, impact and possible solutions to loneliness among people who are terminally ill and their carers in Northern Ireland through the lens of health and social care professionals. DESIGN: An explanatory multi-method study. SETTING/PARTICIPANTS: An online survey (n = 68, response rate 30%) followed by three online focus groups with palliative and end of life care health and social care professionals (n = 14). Data were analysed using descriptive statistics and thematic analysis. RESULTS: Loneliness was perceived by professionals as highly prevalent for people with a terminal illness (92.6%) and their carers (86.8%). Loneliness was considered a taboo subject and impacts on symptoms including pain and breathlessness and overall wellbeing at end of life. Social support was viewed as central towards alleviating feelings of loneliness and promoting connectedness at end of life. Four themes were identified: (1) the stigma of loneliness, (2) COVID-19: The loneliness pandemic (3) impact of loneliness across physical and mental health domains and (4) the power of social networks. CONCLUSION: There is a need for greater investment for social support initiatives to tackle experiences of loneliness at end of life. These services must be co-produced with people impacted by terminal illness to ensure they meet the needs of this population.

The impact of covid-19 on out-of-hours adult hospice care: an online survey.

BACKGROUND: Globally COVID-19 has had a profound impact on the provision of healthcare, including palliative care. However, there is little evidence about the impact of COVID-19 on delivery of out-of-hours specialist palliative care services in the United Kingdom. The aim of the study is to investigate the impact of the COVID-19 pandemic on the delivery of out-of-hours community-based palliative care services. METHODS: A national online census survey of managers of adult hospices in the United Kingdom was undertaken. Survey were emailed to managers of adult hospices (n = 150) who provided out-of-hours community palliative care services. Fifteen questions related specifically to the impact of COVID-19. Quantitative data were analysed using descriptive statistics and qualitative data were analysed using descriptive content analysis. RESULTS: Eighty-one responses to the survey were returned (54% response rate); 59 were complete of which 47 contained COVID-19 data. Findings indicated that COVID-19 impacted on out-of-hours community-based palliative care. To meet increased patient need, hospices reconfigured services; redeployed staff; and introduced new policies and procedures to minimize virus transmission. Lack of integration between charitably and state funded palliative care providers was reported. The interconnected issues of the use and availability of Personal Protective Equipment (n = 21) and infection control screening (n = 12) resulted in changes in nursing practices due to fear of contagion for patients, carers and staff. CONCLUSIONS: Survey findings suggest that due to increased demand for community palliative care services, hospices had to rapidly adapt and reconfigure services. Even though this response to the pandemic led to some service improvements, in the main, out-of-hours service reconfiguration resulted in challenges for hospices, including workforce issues, and availability of resources such as Personal Protective Equipment. These challenges were exacerbated by lack of integration with wider healthcare services. More research is required to fully understand the implications of such changes on the quality of care provided.

Integrating palliative care and heart failure: a protocol for a realist synthesis (PalliatHeartSynthesis).

INTRODUCTION: Heart failure affects over 26 million people worldwide with prevalence expected to grow due to an ageing global population. Palliative care can address the holistic needs of patients with heart failure, and integrated palliative care in heart failure management has been indicated to improve outcomes for patients. Despite known benefits for integrated palliative care in heart failure management, implementation is poor across the majority of global health services. Recent systematic reviews have identified the benefits of integrating palliative care into heart failure management and highlighted barriers to implementation. However, there was heterogeneity in terms of countries, healthcare settings, delivery by differing staff across multidisciplinary teams, modes of delivery and different intervention components. METHODS AND ANALYSIS: The aim of this study is to identify how integrated palliative care and heart failure interventions produce desired outcomes, in which contexts, and for which patients. We will undertake a realist synthesis to identify this, using Pawson's five iterative steps. We will recruit an international stakeholder group comprised of healthcare providers and patients with heart failure to advise and provide feedback throughout the review. Our initial realist programme theory sets out the necessary steps needed to accomplish the final intended outcome(s) from the implementation of integrated palliative care and heart failure. This initial programme theory will be shaped through an iterative process of testing and refinement. ETHICS AND DISSEMINATION: Ethical approval is not required for this study. With our stakeholder group, we will coproduce a user guide that outlines practical advice to optimise, tailor and implement interventions designed to integrate palliative care and heart failure, taking into consideration local context, alongside user-friendly summaries of the synthesis findings using short animations to convey complex findings. We will draw on the expertise within the stakeholder group to identify key stakeholders for disseminating to relevant audiences, ensuring outputs are tailored for their respective needs. PROSPERO REGISTRATION NUMBER: CRD42021240185.

Protocol for a mixed methods exploratory investigation into the role and contribution of the healthcare assistant in out-of-hours palliative care.

BACKGROUND: Most people spend their last year of life at home, with many wishing to die there, but patients may need access to care after hours. Out-of-hours palliative care is delivered by multi-disciplinary teams including Health Care Assistants (HCA). However, little is known about the role, contribution and impact Health Care Assistants have on out-of-hours palliative care services. The aim of this study is to examine the Health Care Assistant role, contribution and impact on service delivery and patient care in out-of-hours community palliative care provided by hospice organisations. METHODS AND ANALYSIS: A mixed methods exploratory study consisting of four phases. Phase one involves a scoping review to systematically map and identify gaps in policy and literature on the HCA role in out-of-hours palliative care. In phase two, all United Kingdom hospices will be invited to participate in an online census to enable the development of a typology of out-of-hours services and the contribution of the Health Care Assistant. During phase three organisational case studies representing different service types will collect information from Health Care Assistants, patients, caregivers and service managers to gather qualitative and quantitative data about out-of-hours service provision and the Health Care Assistant role. Finally, phase four will synthesize and refine results through online focus groups. ETHICS AND DISSEMINATION: Ethical approval has been obtained for phase two through Ulster University Research Governance Filter Committee, Nursing and Health Research. Findings will be disseminated through practitioner and/or research journals, conferences, and social media.

The roles, responsibilities and practices of healthcare assistants in out-of-hours community palliative care: A systematic scoping review.

BACKGROUND: Access to community palliative care 'out-of-hours' - defined as care provided after the normal hours of work - is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution. AIM: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care. DESIGN: Scoping review. DATA SOURCES: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement. RESULTS: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient's and family's physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home. DISCUSSION: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers.

A translational case study of empowerment into practice: A realist evaluation of a member-led dementia empowerment service.

Involving people with dementia in decision-making is widely accepted as a means of empowering them to lead more independent lives and have more meaningful roles in shaping their care. However, there is a need to conduct rigorous evaluations of empowerment-driven services and policies in order to develop a deeper understanding about how to optimise successful implementation. This paper presents the results of an evaluation of Dementia Northern Ireland, an organisation initiated and led by people with dementia. We used a realist evaluation approach that comprised interviews with 15 people with dementia, three staff and two board members, ethnographic observations, along with documentary analysis to identify 'what works, for whom, under what circumstances'. The analysis used realist logic to build up context-mechanism-outcome configurations. The Dementia Northern Ireland service model of empowerment revolved around the formation and maintenance of social groups of people with dementia. Facilitators, recruited and selected by people with dementia, supported six groups, consisting of one to four members with mild to moderate cognitive impairment. Facilitators helped expand empowerment groups, facilitate decision-making, awareness raising and consultation opportunities with group members. The 'Empowerment Groups' appeared to lead to the development of a shared social identity and a sense of collective strength as indicated by interview and observational data demonstrating an activist mentality among group members to challenge the stigma surrounding dementia. Group members also reported improved quality of life. Widespread implementation of the empowerment model has the potential to lead to reduced stigma and greater social inclusion, increased involvement of people with dementia as active co-producers of policy and service development, better services and support. This case study of Dementia Northern Ireland illustrates that there are boundaries and challenges to empowerment in terms of requiring additional support from staff without dementia. However, despite these challenges, empowerment-driven organisations can and should be committed to involving members in lead roles and key decision-making.

Group based video-conferencing for adults with depression: findings from a user-led qualitative data analysis using participatory theme elicitation.

BACKGROUND: Accessing support services for depression has been historically difficult given the societal stigma that exists regarding the condition. Recent advances in digital technologies continue to be postulated as a potential panacea yet the results from research trials have been mixed with a range of effect sizes. METHODS: This article offers a different perspective by presenting a panel of end users (co-researchers) with qualitative interview data (n = 8) taken from a feasibility RCT of a group based video-conferencing service for depressed adults. The co-researcher panel were introduced to a new method of participatory data analysis known as Participatory Theme Elicitation (PTE). This method involves using network analysis techniques to create groupings and visual diagrams in order to support the generation of themes and minimise scientific researcher input/influence. RESULTS: Co-researchers reported that while VC based interventions appeared convenient, accessible and relatively low cost - additional training and support should be offered to improve uptake and retention. In addition, co-researchers suggested that further exploration is needed regarding the level of self-awareness one feels in a group based VC environment and whether this facilitates disclosure (through disinhibition) or increases anxiety. CONCLUSION: The findings presented here appear to support existing (researcher and academic-led) literature in the field as well as suggest new areas for investigation. By presenting data generated solely by co-researchers, this article also adds to the evidence surrounding participatory analysis methods - particularly the growing need for robust approaches that are accessible and less time-consuming than those currently available. TRIAL REGISTRATION NUMBER: NCT03288506 (Clinicaltrials.gov) 20th Sept 2017 https://clinicaltrials.gov/ct2/show/NCT03288506.

Co-producing a shared understanding and definition of empowerment with people with dementia.

BACKGROUND: Empowerment for people with dementia (PWD) is not well defined within the research literature and we feel that this is an important area for development. It is important to seek, consult, and co-produce such a definition with PWD who are more actively involved in their communities post diagnosis (e.g. no longer the 'long goodbye'). This study seeks to combine academic literature review methods with participatory/co-production methods in order to address this gap. We feel this approach also adds to developing methodologies in the field of co-production and user involvement. METHODS: We use a unique approach toward a definition of empowerment for PWD. Phase 1 - A scoping review of medical/health, social care and social policy-based databases to identify any previous literature that may have defined empowerment exclusively for PWD. Based on this literature, we collected a list of terms relating to empowerment for PWD. Phase 2 - Using empowerment key terms set on cards formulated from Phase 1 across three co-production workshops, academic team members, and nine members of Dementia NI (an organisation founded and led by people with dementia) we reviewed the findings of this search and co-produced an agreed definition they felt best described empowerment for them. RESULTS: Phase 1 and 2 led to a definition of empowerment relevant to PWD. This shared understanding of empowerment was defined by PWD as 'A confidence building process whereby PWD are respected, have a voice and are heard, are involved in making decisions about their lives and have the opportunity to create change through access to appropriate resources'. CONCLUSIONS: The strength of this research lies in addressing the current confusion and arbitrariness of empowerment within the context of dementia. This coproduced work also provides evidence for not only the possibility, but also the added value of involving PWD in research in terms of unique insights afforded by their lived experiences.

A randomised controlled pilot and feasibility study of music therapy for improving the quality of life of hospice inpatients.

BACKGROUND: Evidence about the effectiveness of music therapy for improving the quality of life of palliative care patients is positive but weak in terms of risk of bias. METHODS: This study aimed to determine the feasibility of a randomised controlled trial to evaluate the effectiveness of music therapy for improving the quality of life of hospice inpatients, as measured by the McGill Quality of Life questionnaire. Objectives included recruitment of 52 participants over 12 months and provision of data to support the calculation of the required sample size for a definitive randomised trial, taking into account the retention rates of recruited participants; and evaluation of the viability of the intervention and the acceptability of the assessment tool. The design was a single-centre, researcher-blinded randomised pilot and feasibility study involving two parallel groups. Participants were recruited from one inpatient hospice unit in Northern Ireland. Eligibility criteria were an Eastern Cooperative Oncology Group performance status of two or lower and an Abbreviated Mental Test score of seven or more. Consenting patients were randomly allocated to the intervention or control group using a 1:1 allocation ratio. The intervention group received up to six individual music therapy sessions over 3 weeks in addition to usual care. The control group received usual care only. RESULTS: Fifty one participants were recruited over 12 months. Twenty five were allocated to the intervention group and 26 to the control group. Seventy one percent of participants were lost to follow up by week 3, the proposed primary endpoint. The primary endpoint was moved from week 3, when 71% were lost to follow up to week 1, when 33% were lost. The McGill Quality of Life questionnaire was generally acceptable to participants. In order to detect a small to moderate effect size of 0.3, a fully powered study would require the recruitment of 698 participants. CONCLUSIONS: A Phase III randomised controlled trial to evaluate the effectiveness of music therapy in improving the quality of life of hospice inpatients is feasible. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02791048 . Registered 6 June 2016.

Coproduction for feasibility and pilot randomised controlled trials: learning outcomes for community partners, service users and the research team.

PLAIN ENGLISH SUMMARY: Co-producing research with members of the public is increasingly recognised as a valuable process. Yet, despite these good intentions, the literature on coproduction has struggled to keep pace with the coproduction 'movement'. There is a lack of clarity regarding acceptable levels of involvement and attempts at standardising approaches appear generic and lack detail. Moreover, relatively little research has captured the views of all the parties involved (academics, service providers and service users).We conducted interviews with all those involved in developing a new online service for depression in Northern Ireland. Our main questions related to how these three very different groups of people worked together over a two-year period to design, develop and deliver the service (e.g. what were the benefits? What would they do differently?)We found that early involvement was a key factor as this promoted equal ownership. There was also a need to be flexible and recognise other workload pressures. Interestingly, service providers and service users were keen to become more involved in data analysis - this is one of the most under-researched and reported areas within the coproduction literature. Finally, we considered how user involvement worked within complex research designs and how this could be improved. Based on this learning, the paper concludes with a simple 3-step framework that others may wish to follow in order to improve coproduction outcomes within interventions. ABSTRACT: Background Co-production, involving members of the public in research, is increasingly encouraged by research funders. However, reports detailing involvement of the public in the entire research process from design, delivery, analysis and dissemination of findings are lacking. Furthermore, little is known about the lessons learnt from the perspective of the public and researchers; or more specifically lessons learnt when coproducing specific types of research projects, such as feasibility/pilot studies incorporating a randomised controlled trial (RCT) design. This paper aims to provide a more rounded picture of co-production based on the learning outcomes of researchers, their community partners and service users involved in a feasibility/pilot RCT study developing and evaluating an E-health Service for adults with depression. Methods Qualitative research incorporating 11 semi-structured interviews with academic team members (n = 4), community partners (n = 3) and service users with depression (n = 4) Data were analysed using thematic analysis. Results Key factors for successful coproduction include - (1) early involvement at the pre-development stage, including contributing to the scientific grant application; (2) early identification of team strengths and expertise from the outset; (3) regular team meetings and contact (formal or informal) among coproduction partners; (4) a flexible and pragmatic approach to research design (particularly within RCTs); (5) shared decision making and responsibility and (6) recognition of 'other' pressures and providing support to each other. Findings also suggested further scope for involving community partners in data analysis and dissemination through co-authored papers. Those seeking to coproduce interventions or utilise RCT designs should consider tensions between data quality and intervention implementation and ethical issues regarding control groups. Conclusion This paper confirms previous research confirming the benefits of coproduction. However, it also highlights a number of barriers, particularly when using complex research design, such as RCTs. Learning points are summarised in an implementation model for coproducing research. This model may provide a useful guide for considering activities associated with meaningful coproduction. We urge others to test this proposed model more widely in different areas of coproduced research.

Music therapy in UK palliative and end-of-life care: a service evaluation.

Music therapy aligns to the holistic approach to palliative and end-of-life care (PEOLC), with an emergent evidence base reporting positive effect on a range of health-related outcomes for both patient and family carer alongside high client demand. However, the current service provision and the role of music therapists in supporting individuals receiving PEOLC in the UK is currently unknown. OBJECTIVES: This service evaluation aims to identify the provision, role and perceived impact of UK music therapists in supporting patients receiving PEOLC, their families and health and social care professionals. METHODS: A survey was distributed to the British Association for Music Therapy (BAMT) member mailing list in July 2017. BAMT is the professional body for Health and Care Professions Council registered music therapists in the UK. RESULTS: Fifty respondents identified themselves as music therapists currently working with clients receiving PEOLC. The respondents largely reported (84.7%) less than 10 years of experience working in PEOLC settings, with only a minority receiving statutory funding for their role. Music therapists most commonly reported supporting adults with neurological conditions, cancers and dementia. CONCLUSIONS: Although promising that evidence suggests provision of music therapy in UK PEOLC settings in the past 10 years to have increased, lack of sustainable funding suggests the role to not be consistently accessible in PEOLC.