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.

Exploring public awareness and perceptions of palliative care: a qualitative study.

BACKGROUND: Research suggests that the public appear to be confused about the meaning of palliative care. Given the ageing population and associated increase in the number of patients requiring palliative care, it is vital to explore the public's understanding of this concept. Health-promoting palliative care seeks to translate hospice and palliative care ideals into broader public health practice. AIM: To explore public perceptions of palliative care and identify strategies to raise awareness. DESIGN: An exploratory qualitative approach. PARTICIPANTS: Semi-structured telephone interviews were undertaken (N = 50) with members of the public who volunteered to participate in the study. The interviews focused on knowledge and perceptions of palliative care, expectations of palliative care services and the identification of strategies to raise public awareness of palliative care. The interviews were audio recorded and content analysed. RESULTS: Most participants had a general knowledge of palliative care, largely influenced by their own personal experience. They identified that palliative care was about caring for people who were dying and maintaining comfort in the last days of life. Participant's expectations of services included the following: holistic support, symptom management, good communication and practical support to enable choice and carer support. Key aspects identified for promoting palliative care were the development of understanding and use of the term itself and targeted educational strategies. CONCLUSION: Experience of palliative care generates understanding in the general public who also have ideas for increasing knowledge and awareness. The findings can inform policymakers about strategies to raise public awareness of palliative care.

Complementary therapy: perceptions of older people with lung or colorectal cancer.

AIM: To explore how older people with lung and colorectal cancer view registered complementary therapy (CT) services in Northern Ireland. BACKGROUND: A literature review highlighted gaps around information, access, and communication between patients and health professionals regarding CT services. METHODS: Using structured interviews, a survey of 68 patients in one hospital and one hospice was conducted in Belfast, Northern Ireland. RESULTS: All respondents felt that CT services should be better promoted and more easily accessible to older people with cancer. Some patients were concerned about the lack of written information provided regarding CT services, which they believed led to poorer uptake and uncertainty regarding the potential benefits. Others were concerned that engaging in or disclosing CT usage might negatively affect existing relationships with medical professionals. CONCLUSION: Patients should be offered high quality written information on CT services to enable choice, improve knowledge, and promote wider access. Increased physician education may facilitate provision of such information.

A pilot study to evaluate an outpatient service for people with advanced lung cancer.

Many patients with lung cancer are symptomatic from diagnosis, and quality of life (QoL) may be maximised through the use of specialist palliative care in parallel with other treatments. This study explored anxiety, depression, and QoL in five patients, predominantly male (n=4) and with mean age 74 years, using a 'Breathing Space' clinic over a 4-week period. Breathing Space is a nurse-led multidisciplinary outpatient clinic using integrative care with lung cancer patients. The patients received weekly interventions to improve their wellbeing. Qualitative data were collected to explore their expectations and experiences of the clinic, and quantitative data were captured using the Eastern Cooperative Oncology Group Performance Status Rating (ECOG-PSR), the Hospital Anxiety and Depression Scale (HADS), the EQ-VAS, and the EQ-5D. These data were analysed using thematic content analysis and SPSS respectively. It was found that preconceived ideas about clinic attendance were replaced with positive impressions. Anxiety and EQ-VAS scores improved for all patients, and depression scores improved for four of the five patients, although no tests of significance were made. The qualitative data indicated that there were psychosocial benefits to attending the clinic.