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Background: Festivals play an important role in improving death and grief literacy, enabling members of the public to engage with these often-sensitive topics. Good Grief Weston festival was co-designed and delivered with the community in Weston-super-Mare, a coastal town in South-West England with high levels of socioeconomic disadvantage but rich community assets. It was held in person over 8 days in May 2023. Objectives: To evaluate the reach and impact of Good Grief Weston festival and gather data to inform future festivals. Design: Mixed methods evaluation (survey and focus groups). Methods: Online and paper surveys assessing participants' characteristics and experiences were administrated during and after the festival. Survey participants who indicated their willingness to participate were invited to attend a focus group. Focus groups were recorded, transcribed and analysed using thematic analysis. Data were collected by trained community co-researchers. Results: Approximately 3000 people attended the festival. Of 204 completed surveys, 64.5% were from women, age range ⩽15 to ⩾75 years; 88.2% identified as White; 14.9% deaf, disabled/with a chronic condition; 18.9% neurodivergent; 9.0% gay, bisexual or queer. Festival participants were entertained (70.9%), inspired (68.5%), felt part of a like-minded community (54.3%), talked to someone new (49.2%), learnt about grief/bereavement (34.3%), shared or expressed experiences (30.3%) and found out about local support (19.7%). 71.3% reported that they felt more confident talking about grief after attending. Median experience rating was 5 (IQR 0; possible range 1 = poor to 5 = excellent). In free-text comments, participants expressed appreciation for the festival and described benefits in attending. Two focus groups were conducted (n = 8 participants, all women), lasting c.1.5 h. Focus groups added rich descriptions of the festival's value, and data to inform the next festival. Conclusion: Findings suggest festivals of this nature can play a central role in a public health approach. Plain language summary: What was the impact of Good Grief Weston festival? Why was the study done? Previous studies have shown that many people feel unsupported by their community after the death of a loved one. We designed a festival to improve knowledge and support for bereaved people. We did this study to assess how the festival affected the people who attended. What did the researchers do? The team included researchers and people and organisations from the local community. Together, we designed and ran a festival on the topic of death, grief and bereavement in Weston-super-Mare, a coastal town with areas of high deprivation. The festival took place over an eight-day period in May 2023 and included creative, interactive and educational events. The team collected feedback on attendees' experiences of the festival. We did this using online and paper feedback forms, postcards, and focus groups to collect as many opinions as possible. What did the researchers find? We found that a wide range of people attended the festival. Most people who took part in the research rated the festival as 'excellent'. They told us they learnt about grief and bereavement and found out about local support services. Attendees met new people, shared their experiences, and felt that the festival built community spirit. They also made suggestions to improve any future festivals. What do the findings mean? The findings show that in-person festivals can effectively engage the public on the topic of death, grief and bereavement. They can also help develop connections between people and organisations in communities. These connections and learning opportunities may help communities to support their members through bereavement. [ABSTRACT FROM AUTHOR]

BackgroundSpiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited.AimTo explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers.DesignFocus group study.Setting/participantsSeparate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically.ResultsA total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients' and caregivers' spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members' de-prioritisation and lack of time. Patients' research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers' priorities included staff training, assessment, studying impact, and caregiver's spiritual care needs.ConclusionTo meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research.

BACKGROUND: patient empowerment, through which patients become self-determining agents with some control over their health and healthcare, is a common theme across health policies globally. Most care for older people is in the acute setting, but there is little evidence to inform the delivery of empowering hospital care. OBJECTIVE: we aimed to explore challenges to and facilitators of empowerment among older people with advanced disease in hospital, and the impact of palliative care. METHODS: we conducted an ethnography in six hospitals in England, Ireland and the USA. The ethnography involved: interviews with patients aged ≥65, informal caregivers, specialist palliative care (SPC) staff and other clinicians who cared for older adults with advanced disease, and fieldwork. Data were analysed using directed thematic analysis. RESULTS: analysis of 91 interviews and 340 h of observational data revealed substantial challenges to empowerment: poor communication and information provision, combined with routinised and fragmented inpatient care, restricted patients self-efficacy, self-management, choice and decision-making. Information and knowledge were often necessary for empowerment, but not sufficient: empowerment depended on patient-centredness being enacted at an organisational and staff level. SPC facilitated empowerment by prioritising patient-centred care, tailored communication and information provision, and the support of other clinicians. CONCLUSIONS: empowering older people in the acute setting requires changes throughout the health system. Facilitators of empowerment include excellent staff-patient communication, patient-centred, relational care, an organisational focus on patient experience rather than throughput, and appropriate access to SPC. Findings have relevance for many high- and middle-income countries with a growing population of older patients with advanced disease.

Background: People with chronic kidney disease (CKD) have significantly higher morbidity and mortality following myocardial infarction (MI) than the general population. Despite this, they are less likely to receive invasive management and guideline-directed medications than those without kidney disease. It is unclear why this treatment variation exists and whether or not it reflects equal and appropriate access to care for the high-risk CKD population. Aims: The aims are to (1) understand how management decisions following an MI are made for, and with, people with CKD, and (2) describe the experiences of people with CKD who have recently received MI care in England. Method: We will recruit 15–20 patients with CKD and previous MI, and 15–20 clinical staff who are involved in treatment decision-making, from 3–5 NHS hospital trusts in the UK. Purposive sampling will be used to ensure diversity in participants with respect to age, gender, ethnicity and, where relevant, profession or degree of kidney impairment. We will undertake semi-structured interviews following flexible topic guides developed for patients and clinical staff. Interviews will be audio-recorded and transcribed. Transcripts will be analysed using the six steps outlined in Braun and Clarke's thematic analysis, within an interpretivist, constructionist approach. Analysis will be primarily inductive. We will label sections of text with codes to reflect semantic or latent meaning and cluster similar codes together to derive themes which we will define and name. We will produce a report comprising themes central to MI treatment decision-making in people with CKD, illustrated with examples of data and analytic commentary, and demonstrate where our research stands within the context of the literature and wider context. [ABSTRACT FROM AUTHOR]