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.

Electrophysiological evidence of sustained attention to music among conscious participants and unresponsive hospice patients at the end of life.

OBJECTIVE: To characterize electrophysiological activity, and likely neural sources of that activity, associated with listening to music in both healthy participants and in a small group of hospice patients both when responsive and when unresponsive hours before death. METHODS: Young, healthy participants (N = 22) were asked to attend to (Active condition) and to ignore (Passive condition) brief (6 s) music excerpts. A smaller group (N = 13) of hospice patients was asked to attend to the same musical excerpts (Active condition only), both when they were responsive (N = 8) and again when they became unresponsive (N = 4) only hours before death. EEG-derived event-related spectral perturbations (ERSPs) to music stimuli, and their approximate neural sources, were computed for each individual in both groups. RESULTS: In the healthy participants, alpha-band ERSP during the music excerpts in a group-level analysis was significantly lower in posterio-parietal brain areas in the Active condition than in the Passive condition (event-related desynchronization, ERD). Moreover, in an analysis of individual ERSP data, most (18 of 22 or 84%) healthy participants showed meaningful sustained (4 or more seconds) alpha-band suppression in one or more posterio-parietal brain areas when they were asked to attend to the music, whereas far fewer healthy participants (only 7 of 19 or 37%) generated the same response when asked to ignore the music, indicating that posterio-parietal alpha-band ERD could be a useful marker of music listening. Similarly, 75% of eight responsive hospice patients, and 100% of four unresponsive hospice patients showed sustained posterio-parietal alpha-band suppression when asked to attend to the music, indicating that they could be listening to the music covertly even when overtly unresponsive. CONCLUSIONS: Some (but likely not all, as other patients will vary from those we studied) unresponsive patients at the end of life might be able to listen to music, despite being unable to overtly indicate their awareness. SIGNIFICANCE: Music stimulation may be a promising way to engage unresponsive patients.