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.

The 'ripple effect': Towards researching improvisational music therapy in dementia care homes.

Increased interest in, and demand for, music therapy provision for persons with dementia prompted this study's exploration of music therapists' strategies for creating musical communities in dementia care settings, considering the needs and resources of people affected by dementia. Focus group discussions and detailed iterative study of improvisational music therapy work by six experienced practitioners clarify the contextual immediacy and socio-musical complexities of music therapy in dementia care homes. Music therapy's 'ripple effect', with resonances from micro (person-to-person musicking), to meso (musicking beyond 'session time') and macro level (within the care home and beyond), implies that all who are part of the dementia care ecology need opportunities for flourishing, shared participation, and for expanded self-identities; beyond 'staff', 'residents', or 'being in distress'. On such basis, managers and funders might consider an extended brief for music therapists' roles, to include generating and maintaining musical wellbeing throughout residential care settings.