Katrina Wyatt’s research while affiliated with University of Exeter and other places

Background Poverty can have significant impacts on health and wellbeing. However, asking patients about their broader socio-economic circumstances is not routine within primary care consultations. Aim To understand healthcare professionals’ experiences of communicating with patients about their socio-economic circumstances and how a bespoke training programme supported these conversations in routine consultations. Design & setting Healthcare professionals from 30 GP practices across England received training to improve understanding and communication with patients about the ways that poverty impacted their mental health. Method Semi-structured interviews were undertaken with 49 GPs and allied health professionals to understand barriers and enablers to communication around poverty and the impact of the training on their consultation practice. Results Health professionals often lacked confidence in discussing socio-economic issues and welcomed information on how to do this sensitively. Asking questions relating to poverty-related stresses was felt to lead to better understanding around the causes of mental distress, avoidance of problematic assumptions and inappropriate antidepressant prescribing and to enable more coordinated and appropriate support from practice teams. Conclusion Asking patients about their socio-economic circumstances can facilitate provision of appropriate support.

Background The South West Peninsula (Cornwall, Devon, Somerset) has the highest proportion of over 65s (24.2%) and is the only English rural population with greater economic deprivation than in urban areas. Coastal populations have the worst health outcomes in England. Despite innovation among communities to support those with health and care needs in later life, recruitment to palliative care research in the region is low and there has been no evaluation of public health palliative care interventions. Objectives A new South West Peninsula Palliative Care Research Partnership was funded for 15 months, bringing together four universities, the voluntary and community sector (including hospices) and local National Institute for Health and Care Research networks. The aim was to establish a sustainable multisectoral partnership that would identify community-based support needs for underserved rural and coastal populations by: conducting a literature scoping review on interventions to enable community members to support the dying; delivering a research capacity-building programme; co-creating public and patient involvement capacity; determining the resources and needs for communities to support dying well; integrating findings to develop a framework of community-based support and identify future research questions; establishing a sustainable research network infrastructure for the long-term design and delivery of palliative care research. Design We convened partners to identify research needs and co-designed activities to meet our objectives. These included a scoping review; a capacity-building programme of training, seminars and a journal club; forming a patient and public involvement group; a multistranded community engagement programme using different creative approaches; four focus groups with members of the public and one with community workers; and producing three ‘storytelling’ audio recordings. Findings were presented to the partnership at a regional workshop. Results The scoping review showed that community-engaged palliative care interventions can improve outcomes for individuals but provided little evidence about which approaches work for different communities. Five online seminars and a quarterly journal club to develop research capacity were regularly attended by 15 to 25 participants from across the partnership. While evaluating our engagement methods was beyond the partnership’s scope, levels of participation suggested that creative methods of engagement show potential to help researchers and practitioners better understand the needs and priorities of underserved populations. Data showed that rural, coastal and low-income communities face challenges in accessing end-of-life care and support due to issues such as transport to and distance from services, erosion of neighbourhood networks, isolation from family and friends, ‘patchiness’ of palliative care services and a lack of care providers. Community organisations are well-placed to co-produce and facilitate methodologies for involving communities in palliative care research. Limitations Although activities took place in diverse areas, it was not possible within the available resources to cover the entire large geographical region, particularly the most isolated rural areas. Conclusions Partnerships bringing together voluntary and community sector organisations, palliative care providers, health and social care providers, individuals with experience and academics have potential to design future research and public health interventions that better understand local context, involving and supporting communities to address their needs at end of life. Funding This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135312.

There is an increase in calls across diverse issues for a “public health approach” however, it is not clear whether there is any shared understanding in approach in its conceptualisation or implementation. Our aims were to (1) identify and categorise the issues which discuss a public health approach within published literature since 2010, (2) chart the descriptions and applications of public health approaches across and within four purposively sampled categories of issues, and (3) capture any evaluations conducted. A scoping review of published literature was undertaken; Seven leading databases were searched: AMED, APA PsycInfo, ASSIA, CINAHL complete, Cochrane Library (Review), Embase, and MEDLINE for articles published between 2010 and 2022 which have applied, described or called for a “public health approach” to address any issue. 3,573 studies were identified through our initial searches, of these 1,635 articles were recognised for possible inclusion from analysis of titles and abstract. The final number of included studies was 1,314. We identified 28 categories, 26 of which were societal issues, where a public health approach is being advocated. We purposively selected four of these categories; adverse childhood experiences; end of life care; gambling addiction and violence reduction/ knife crime for further analysis of the approach including how it was conceptualised and operationalised; less than 13% of the studies described the implementation of a public health approach and there was considerable heterogeneity across and within categories as to how this was done. Since 2010 there have been increasing calls for a public health approach to be taken to address health and societal challenges. However, the operationalisation of a public health approach varied extensively and there were few evaluations of the approach. This has implications for policy makers and those involved in commissioning related approaches in the future as the evidence-base is limited.

Background England’s South-west Peninsula is largely rural, has a high proportion of over 65s, and has areas of rural and coastal deprivation. Rural and low-income populations face inequities at end of life and little is known about the support needs of rural, coastal and low-income communities. Objectives To understand how to foster community support for dying and grieving well, a regional, multi-sectoral research partnership developed a community engagement programme to explore experiences of seeking support, issues important to people and the community support they valued. This article shares what people told us about the role that communities can play at end of life, and reflects on learning from our process of engaging communities in conversations about dying. Design and methods A programme of varied community engagement which included: the use of the ‘Departure Lounge’ installation and four focus groups with interested individuals in a range of community settings; the co-creation of a ‘Community Conversation’ toolkit to facilitate conversations with individuals with experience of end-of-life care and their carers with Community Builders; a focus group with Community Builders and a storytelling project with three bereaved individuals. Results People valued community support at the end of life or in bereavement that offered connection with others, peer support without judgement, responded to their individual needs and helped them to access services. Creative methods of engagement show potential to help researchers and practitioners better understand the needs and priorities of underserved populations. Collaboration with existing community groups was key to engagement, and contextual factors influenced levels of engagement. Conclusion Local community organizations are well placed to support people at end of life. This work highlighted the potential for partnership with palliative care and bereavement organizations, who could offer opportunities to develop people’s knowledge and skills, and together generate sustainable solutions to meet local need.

There are calls for researchers to study existing community assets and activities that appear to improve health and have achieved longevity. The TR14ers Community Dance Charity Limited is a community youth dance group that has been running since 2005 providing free weekly sessions for children and adolescents in an economically disadvantaged town in the UK. An in-depth case study employing qualitative, quantitative and participatory methods was undertaken with the TR14ers (current participants and those who have left, co-ordinators and families) over 6 months with the aim of understanding the sustainable processes and impact of the Group. The 12 complex systems’ leverage points described by Meadows and the five domains of adolescent wellbeing developed by the United Nations H6+ Technical Working Group on Adolescent Health and Well-Being were used as frameworks to recognise the complexity of community assets like the TR14ers. The quantitative and qualitative data indicated that being part of the TR14ers contributed to multiple health and wellbeing outcomes. The positive experiences of being a TR14er led members to actively recruit others through word of mouth and public performances. Central to the TR14ers is a commitment to children’s rights, which is communicated formally and informally throughout the membership informing how and what the Group does, leading to the structure and delivery of the Group evolving over time. Members sought to ensure the sustainability of the Group after they had left and were keen to mentor younger members to develop and become the leaders. Based on the insights from this case study we suggest that efforts to develop cultures of health, like the TR14ers, should focus on the core values of the activity or intervention that underpin what it does and how within the local context.

Background Public health palliative care views communities as an integral part of care delivery at the end of life. This community-provider partnership approach has the potential to improve end-of-life care for people who are dying and their carers. Objective To identify and appraise the current literature related to public health interventions that enable communities to support people who are dying and their carers. Methods A scoping review was conducted, applying Arksey and O'Malley's methods. Data was extracted and synthesized using narrative techniques, and results are reported using PRISMA guidelines. Results The search yielded 2,902 results. Eighteen met inclusion criteria and were included in the analysis. Interventions were categorized according to their target population: people with life-limiting illness (ex. facilitated social interaction, helplines and guided discussions about death and dying); carers (ex. social support mapping, psychoeducation, and community resource identification and facilitation); or dyads (ex. reminiscence activities, practical and emotional support from volunteers, online modules to bolster coping mechanisms). Public health palliative care approaches were delivered by key community stakeholders such as community health workers, volunteers, peer mentors, and pre-established support groups. Despite reported challenges in identifying appropriate tools to measure effectiveness, studies report improvement in quality of life, loneliness, social support, stress and self-efficacy. Conclusion We found that community-engaged palliative care interventions can lead to appreciable changes in various outcomes, though it was difficult to determine in which contexts this approach works best because of the dearth of contextual information reported. Based on the varied design and implementation strategies, it is clear that no one method for enhancing end of life care will benefit all communities and it is crucial to engage community members at all stages of the design and implementation process. Future research should be grounded in appropriate theory, describe contextual differences in these communities, and should specifically examine how demographics, resource availability, and social capital might impact the design, implementation, and results of public health palliative care interventions.

Improving child and adolescent mental health requires the careful development and rigorous testing of interventions and delivery methods. This includes universal school-based mindfulness training, evaluated in the My Resilience in Adolescence (MYRIAD) trial reported in this special edition. While discovering effective interventions through randomised controlled trials is our ultimate aim, null or negative results can and should play an important role in progressing our understanding of what works. Unfortunately, alongside publication bias there can be a tendency to ignore, spin or unfairly undermine disappointing findings. This creates research waste that can increase risk and reduce benefits for future service users. We advocate several practices to help optimise learning from all trials, whatever the results: stronger intervention design reduces the likelihood of foreseeable null or negative results; an evidence-informed conceptual map of the subject area assists with understanding how results contribute to the knowledge base; mixed methods trial designs aid explanation of outcome results; various open science practices support the dispassionate analysis of data and transparent reporting of trial findings; and preparation for null or negative results helps to temper stakeholder expectations and increase understanding of why we conduct trials in the first place. To embed these practices, research funders must be willing to pay for pilot studies and ‘thicker’ trials, and publishers should judge trials according to their conduct and not their outcome. MYRIAD is an exemplar of how to design, conduct and report a trial to optimise learning, with important implications for practice.

Background Access to affordable, appropriate housing is one of the key social determinants of health, affecting well-being across the lifecourse. However, beyond a recognition that housing quality is linked to place of death, little is known about the ways in which housing status impacts social, emotional, and practical aspects of dying and bereavement. Method The Checking Out project is a qualitative study aiming to explore the ways in which socio-economic status impacts people’s experiences of, and attitudes towards, death, dying, and bereavement in the United Kingdom. Qualitative interviews were carried out with 14 bereaved individuals with experience of poverty at end of life or in bereavement, and 15 professionals supporting individuals in low-income communities. Interviews were conducted via phone/video call, and data include experiences of end of life and bereavement both before and during the pandemic. Transcripts were examined using thematic analysis. Results Housing emerged as an important factor affecting people’s experiences, with 7 of the 14 bereaved individuals and all except 1 of the professionals discussing housing-related issues. Participants described ways in which unsuitable housing and housing insecurity impacted practical aspects of dying but also emotional and social well-being at end of life. Housing-related issues affected both patients and their families, though families found it difficult to air these concerns when their relative was dying. Conclusion The paper demonstrates how trusted professionals are able to advocate or address the issues faced by bereaved individuals and suggests implications for policy and practice. A greater awareness of the potential impact of housing status across public services, including healthcare practitioners, welfare support, and housing providers, could better support patients and practitioners to address these issues proactively. Housing providers and policy-makers should be included as key partners in collaborative public health approaches to palliative care.