Tracey McConnell

Systematic realist review of key factors affecting the successful implementation and sustainability of the Liverpool care pathway for the dying patient.

BACKGROUND The Liverpool Care Pathway (LCP) is recommended internationally as a best practice model for the care of patients and their families at the end of life. However, a recent national audit in the United Kingdom highlighted shortcomings; and understanding is lacking regarding the processes and contextual factors that affect implementation. AIM To identify and investigate factors that help or hinder successful implementation and sustainability of the LCP. METHODS Electronic databases (Medline, CINAHL, British Nursing Index, Science Direct) and grey literature were searched, supplemented by citation tracking, in order to identify English language papers containing information relevant to the implementation of the LCP. Using a realist review approach, we systematically reviewed all relevant studies that focused on end of life care and integrated care pathway processes and identified theories that explained how the LCP and related programmes worked. RESULTS Fifty-eight papers were included in the review. Key factors identified were: a dedicated facilitator, education and training, audit and feedback, organisational culture, and adequate resources. DISCUSSION We discuss how these factors change behaviour by influencing the beliefs, attitudes, motivation and confidence of staff in relation to end of life care, and how contextual factors moderate behaviour change. CONCLUSIONS The implementation process recommended by the developers of the LCP is necessary but not sufficient to ensure successful implementation and sustainability of the pathway. The key components of the intervention (a dedicated facilitator, education and training, audit and feedback) must be configured to influence the beliefs of staff in relation to end of life care, and increase their motivation and self-efficacy in relation to using the LCP. The support of senior managers is vital to the release of necessary resources, and a dominant culture of cure, which sees every death as a failure, works against effective communication and collaboration in relation to the LCP.

Music therapy for end-of-life care: an updated systematic review

Background: Music therapy during palliative and end-of-life care is well established and positive benefits for patients have been reported. Aim: Assess the effectiveness of music therapy versus standard care alone or standard care in combination with other therapies for improving psychological, physiological and social outcomes among adult patients in any palliative care setting. Data sources: In order to update an existing Cochrane systematic review, we searched MEDLINE, CINAHL, EMBASE, PsycINFO, CENTRAL, ClinicalTrials.gov register and Current Controlled Trials register to identify randomised or quasi-randomised controlled trials published between 2009 and April 2015. Nine electronic music therapy journals were searched from 2009 until April 2015, along with reference lists and contact was made with key experts in music therapy. Only studies published in English were eligible for inclusion. Two reviewers independently screened titles, abstracts, assessed relevant studies for eligibility, extracted data and judged risk of bias for included studies. Disagreements were resolved through discussion with a third reviewer. Data were synthesised in Revman using the random effects model. Heterogeneity was assessed using I2. Results: Three studies were included in the review. Findings suggest that music therapy may be effective for helping to reduce pain in palliative care patients (standard mean deviation = −0.42, 95% confidence interval = −0.68 to −0.17, p = 0.001). Conclusion: Available evidence did not support the use of music therapy to improve overall quality of life in palliative care. While this review suggests that music therapy may be effective for reducing pain, this is based on studies with a high risk of bias. Further high-quality research is required.

Music therapy for palliative care: A realist review

OBJECTIVE Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation. METHOD We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therapy for palliative care. In keeping with the realist approach, we examined all relevant literature to develop theories that could explain how music therapy works. RESULTS A total of 51 articles were included in the review. Music therapy was found to have a therapeutic effect on the physical, psychological, emotional, and spiritual suffering of palliative care patients. We also identified program mechanisms that help explain music therapys therapeutic effects, along with facilitating contexts for implementation. SIGNIFICANCE OF RESULTS Music therapy may be an effective nonpharmacological approach to managing distressing symptoms in palliative care patients. The findings also suggest that group music therapy may be a cost-efficient and effective way to support staff caring for palliative care patients. We encourage others to continue developing the evidence base in order to expand our understanding of how music therapy works, with the aim of informing and improving the provision of music therapy for palliative care patients.

Recruiting Participants for Randomized Controlled Trials of Music Therapy: A Practical Illustration

BACKGROUND Failure to recruit sufficient numbers of participants to randomized controlled trials is a common and serious problem. This problem may be additionally acute in music therapy research. OBJECTIVE To use the experience of conducting a large randomized controlled trial of music therapy for young people with emotional and behavioral difficulties to illustrate the strategies that can be used to optimize recruitment; to report on the success or otherwise of those strategies; and to draw general conclusions about the most effective approaches. METHODS Review of the methodological literature, and a narrative account and realist analysis of the recruitment process. RESULTS The strategies adopted led to the achievement of the recruitment target of 250 subjects, but only with an extension to the recruitment period. In the pre-protocol stage of the research, these strategies included the engagement of non-music therapy clinical investigators, and extensive consultation with clinical stakeholders. In the protocol development and initial recruitment stages, they involved a search of systematic reviews of factors leading to under-recruitment and of interventions to promote recruitment, and the incorporation of their insights into the research protocol and practices. In the latter stages of recruitment, various stakeholders including clinicians, senior managers and participant representatives were consulted in an attempt to uncover the reasons for the low recruitment levels that the research was experiencing. CONCLUSIONS The primary mechanisms to promote recruitment are education, facilitation, audit and feedback, and time allowed. The primary contextual factors affecting the effectiveness of these mechanisms are professional culture and organizational support.

Healthcare staff 's experience in providing end-of-life care to children: A mixed-method review.

Background: Staff who provide end-of-life care to children not only have to deal with their own sense of loss but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges. Aim: The aim of this review is to explore the experiences of healthcare professionals who provide end-of-life care to children in order to inform the development of interventions to support them, thereby improving the quality of paediatric care for both children and their families. Data sources: Searches included CINAHL, MEDLINE, Web of Science, EMBASE, PsychINFO and The Cochrane Library in June 2015, with no date restrictions. Additional literature was uncovered from searching reference lists of relevant studies, along with contacting experts in the field of paediatric palliative care. Design: This was a systematic mixed studies review. Study selection, appraisal and data extraction were conducted by two independent researchers. Integrative thematic analysis was used to synthesise the data. Results: The 16 qualitative, 6 quantitative and 8 mixed-method studies identified included healthcare professionals in a range of settings. Key themes identified rewards and challenges of providing end-of-life care to children, the impact on staff’s personal and professional lives, coping strategies and key approaches to help support staff in their role. Conclusion: Education focusing on the unique challenges of providing end-of-life care to children and the importance of self-care, along with timely multidisciplinary debriefing, are key strategies for improving healthcare staff’s experiences, and as such the quality of care they provide.

The Possibility of Critical Realist Randomised Controlled Trials

BackgroundSome realists have criticised randomised controlled trials for their inability to explain the causal relations that they identify; to take into account the influence of the social context of the interventions they evaluate; and to account for individual difference. However, among realists, there is controversy over whether it is possible to improve trials by making them realist, or whether realism and the philosophical assumptions underlying trials are incompatible. This paper contributes to the debate in Trials on this issue. The debate thus far has concentrated on the possibility of combining trial methodology with that of realist evaluation.Main bodyWe concur with the contention that it is not feasible to combine randomised controlled trial design with the realist evaluation approach. However, we argue that a different variant of realism, critical realism, provides a more appropriate theoretical grounding for realist trials.In contrast to realist evaluation, which regards social mechanisms as an amalgam of social resources and people’s reasoning, critical realism insists on their distinction. It does so on the basis of its assertion of the need to distinguish between social structures (in which resources lie) and human agency (which is at least partly guided by reasoning). From this perspective, conceiving of social mechanisms as external to participants can be seen as a valid methodological strategy for supplementing the exclusive concentration of trials on outcomes.While accepting realist evaluation’s insistence that causality in open systems involves a configuration of multiple generative mechanisms, we adopt the critical realist interpretation of the experimental method, which sees it as creating artificial closure in order to identify the effects of specific causal mechanisms. If randomised controlled trials can be regarded as epidemiological proxies that substitute probabilistic controls over extraneous factors for closed experiments, their examination of the powers of discrete mechanisms through observation of the variation of outcomes is appropriate.ConclusionWhile there are still issues to be resolved, critical realist randomised controlled trials are possible and have the potential to overcome some of the difficulties faced by traditional trial designs in accounting for the influence of social context and individual interpretation.

A critical realist evaluation of a music therapy intervention in palliative care

BackgroundMusic therapy is increasingly used as an adjunct therapy to support symptom management in palliative care. However, studies to date have paid little attention to the processes that lead to changes in patient outcomes. To fill this gap, we examined the processes and experiences involved in the introduction of music therapy as an adjunct complementary therapy to palliative care in a hospice setting in the United Kingdom (UK).MethodsUsing a realistic evaluation approach, we conducted a qualitative study using a variety of approaches. These consisted of open text answers from patients (n = 16) on how music therapy helped meet their needs within one hospice in Northern Ireland, UK. We also conducted three focus groups with a range of palliative care practitioners (seven physicians, seven nursing staff, two social workers and three allied health professionals) to help understand their perspectives on music therapy’s impact on their work setting, and what influences its successful implementation. This was supplemented with an interview with the music therapist delivering the intervention.ResultsMusic therapy contains multiple mechanisms that can provide physical, psychological, emotional, expressive, existential and social support. There is also evidence that the hospice context, animated by a holistic approach to healthcare, is an important facilitator of the effects of music therapy. Examination of patients’ responses helped identify specific benefits for different types of patients.ConclusionsThere is a synergy between the therapeutic aims of music therapy and those of palliative care, which appealed to a significant proportion of participants, who perceived it as effective.

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

Plain English summaryCo-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.AbstractBackground 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.

20 Implementation of music therapy in an inpatient hospice setting: a realist evaluation

Introduction Music therapy is becoming increasingly common as an adjunct therapy to support symptom management in palliative care settings. There is a small but promising research body identifying the effect of music therapy on patient reported outcomes, including health related quality of life. However, studies to date have paid little attention to the processes which lead to these changes in patient outcomes. Aims To explore the processes involved in the implementation of music therapy as part of a feasibility randomised control trial to an inpatient specialist palliative care setting in the United Kingdom. Methods A realist evaluation approach was used. A mixed-methods qualitative approach involved three focus groups with a range of healthcare professionals (n=19) and a music therapist in addition to an analysis of open-text in a quality of life questionnaire with patients (n=11). Results Music therapy contains multiple mechanisms that can provide physical, psychological, emotional, expressive, existential and social support. There is also evidence that the hospice context, instilled by a holistic approach to health care, is an important facilitator of the effects of music therapy. Examination of patients’ responses helped identify specific benefits for patients with particular characteristics. Conclusions There is a synergy between the therapeutic aims of music therapy and those of palliative care, which appealed to a significant proportion of participants, who perceived it as effective.