Search

Introduction: The aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self‐management of stoma‐related distress. The current identification and management of distress in young people with a stoma is often suboptimal in clinical settings and there is a need for improved support resources. Methods: Two consensus group meetings were carried out via online video conferencing, using nominal group technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self‐management intervention. Results: Nineteen young people, aged 19–33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty‐nine topics were generated by participants, seven of which reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7‐point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma 'hacks', for example, useful everyday tips regarding clothing, making bag changes easier and so forth; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey. Conclusions: Findings extend previous research on young people's experiences of stoma surgery, by generating consensus on young people's priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self‐management resource for young people with an IBD stoma and have relevance for the clinical management of stoma‐related distress in this population. Patient or Public Contribution: Three patient contributors are co‐authors on this paper, having contributed to the study design, interpretation of results and writing of the manuscript. The study's Patient and Public Involvement and Engagement advisory group also had an integral role in the study. They met with the research team for four 2‐h virtual meetings, giving input on the aims and purpose of the study, recruitment methods, and interpretation of findings. The group also advised on the age range for participants. The views of young people with a stoma are the central component of the study reported in this paper, which aims to gain consensus among young people with an IBD stoma on their priorities for the content of a resource to self‐manage distress related to stoma surgery. [ABSTRACT FROM AUTHOR]

Background: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long‐term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. Methods: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. Results: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high‐risk situations, leading to hypervigilance and paternalistic approaches to care. Conclusion: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. Patient or Public Contribution: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write‐up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors. [ABSTRACT FROM AUTHOR]

Background: Globally, it is estimated that one in three adults live with two or more long‐term conditions (multiple long‐term conditions, MLTCs), that require self‐management. People who experience socioeconomic deprivation face significant health inequalities due to a range of interrelated characteristics that lead to a lack of resources and opportunities. Previous research with underserved populations indicate low levels of trust towards primary care providers and potential barriers for developing patient‐healthcare professional relationships. The purpose of this paper is to explore the barriers and facilitators to self‐managing MLTCs, amongst people who experience socioeconomic deprivation. Methods: Semistructured one‐to‐one interviews with adults (n = 28) living in London and Sheffield, United Kingdom with MLTCs who are experiencing socioeconomic deprivation. Participants were recruited through general practices, community channels and social media. Data were analysed in NVivo using reflexive thematic analysis methods. Findings: Four analytical themes were developed: (1) challenges in accessing healthcare services, financial assistance, and cultural awareness; (2) empowerment and disempowerment through technology, including digital exclusion, and use of technology; (3) impact and causes of exclusion on self‐management, including social isolation, area‐based and economic exclusion, and health‐related stigma and (4) adapting self‐management strategies, including cost‐effective, and culturally/lifestyle appropriate strategies. Conclusions: Future health interventions and services need to be developed with consideration of the combined complexities of managing MLTCs while experiencing socioeconomic deprivation. Increased awareness in practitioners and commissioners of the complexities surrounding the lives of people experiencing socioeconomic deprivation, and the need for targeted strategies to promote self‐management of MLTCs are of great importance. Patient or Public Contribution: A patient advisory group contributed to all stages of the study, including providing important feedback on study documents (topic guides and recruitment materials), as well as providing critical insights surrounding the interpretation of interview data. [ABSTRACT FROM AUTHOR]

Introduction: In England, primary care networks (PCNs) offer opportunities to improve access to and sustainability of general practice through collaboration between groups of practices to provide care with a broader range of practitioner roles. However, there are concerns that these changes may undermine continuity of care. Our study investigates what the organisational shift to PCNs means for continuity of care. Methods: The paper uses thematic analysis of qualitative data from interviews with general practitioners and other healthcare professionals (HCPs, n = 33) in 19 practices in five PCNs, and their patients (n = 35). Three patient cohorts within each participating practice were recruited, based on anticipated higher or lower needs for continuity of care: patients over 65 years with polypharmacy, patients with anxiety or depression and 'working age' adults aged between 18 and 45 years. Findings: Patients and clinicians perceived changes to continuity in PCNs in our study. Larger‐scale care provision in PCNs required better care coordination and information‐sharing processes, aimed at improving care for 'vulnerable' patients in target groups. However, new working arrangements and ways of delivering care in PCNs undermine HCPs' ability to maintain continuity through ongoing relationships with patients. Patients experience this in terms of reduced availability of their preferred clinician, inefficiencies in care and unfamiliarity of new staff, roles and processes. Conclusions: New practitioners need to be effectively integrated to support effective team‐based care. However, for patients, especially those not deemed 'vulnerable', this may not be sufficient to counter the loss of relationship with their practice. Therefore, caution is required in relation to designating patients as in need of, or not in need of continuity. Rather, continuity for all patients could be maintained through a dynamic understanding of the need for it as fluctuating and situational and by supporting clinicians to provide follow‐up care. Patient and Public Involvement (PPI): A PPI group was recruited and consulted during the study for feedback on the study design, recruitment materials and interpretation of findings. [ABSTRACT FROM AUTHOR]

Introduction: Associations between structural inequalities and health are well established. However, there is limited work examining this link in relation to mental health, or that centres public perspectives. This study explores people's experience and sense‐making of inequality in their daily lives, with particular consideration of impacts on mental health. Methods: We conducted a peer research study. Participants had to live in one of two London Boroughs and have an interest in inequalities and mental health. Using social media, newsletters, local organisations and our peer researchers' contacts, we recruited 30 participants who took photos representing their experience of inequality and discussed them during semi‐structured interviews. Data were analysed using reflexive thematic analysis. Results: Three themes were identified in this study: (1) inequalities are unjust, multilayered and intertwined with mental health. Accounts demonstrated a deep understanding of inequalities and their link to mental health outcomes, describing inequalities as 'suffering' and 'not good for anyone'. Financial, housing, immigration and healthcare problems exacerbated poor mental health, with racism, gender‐based violence and job loss also contributing factors for both poor mental health and experiences of inequality; (2) inequalities exclude and have far‐reaching mental health consequences, impacting personal sense of belonging and perceived societal value and (3) moving forwards—addressing long‐standing inequality and poor public mental health necessitated coping and resilience strategies that are often unacknowledged and undervalued by support systems. Conclusion: Lived experience expertise was central in this study, creating an innovative methodological approach. To improve public mental health, we must address the everyday, painful structural inequalities experienced by many as commonplace and unfair. New policies and strategies must be found that involve communities, redistributing resources and power, building on a collective knowledge base, to coproduce actions combatting inequalities and improving population mental health. Patient or Public Contribution: This study was peer‐led, designed and carried out by researchers who had experiences of poor mental health. Six authors of the paper worked as peer researchers on this study. [ABSTRACT FROM AUTHOR]

Introduction: This study characterized the extent to which (1) financial barriers and (2) abortion care-seeking within a person's country of residence were associated with delays in abortion access among those travelling to England and the Netherlands for abortion care from European countries where abortion is legal on broad grounds in the first trimester but where access past the first trimester is limited to specific circumstances. Methodology: We drew on cross-sectional survey data collected at five abortion clinics in England and the Netherlands from 2017 to 2019 (n = 164). We assessed the relationship between difficulty paying for the abortion/travel, acute financial insecurity, and in-country care seeking on delays to abortion using multivariable discrete-time hazards models. Results: Participants who reported facing both difficulty paying for the abortion procedure and/or travel and difficulty covering basic living costs in the last month reported longer delays in accessing care than those who had no financial difficulty (adjusted hazard odds ratio: 0.39 95% CI 0.21–0.74). This group delayed paying other expenses (39%) or sold something of value (13%) to fund their abortion, resulting in ~ 60% of those with financial difficulty reporting it took them over a week to raise the funds needed for their abortion. Having contacted or visited an abortion provider in the country of residence was associated with delays in presenting abroad for an abortion. Discussion: These findings point to inequities in access to timely abortion care based on socioeconomic status. Legal time limits on abortion may intersect with individuals' interactions with the health care system to delay care. Plain Language Summary: This paper explores delays in accessing abortion care associated with financial and medical system barriers. We focus on residents of countries in Europe where abortion is available on broad grounds in the first trimester seeking abortion care outside of their country of residence. This study demonstrates an association between difficulty covering abortion costs for people facing financial insecurity and in-country care seeking and delays in accessing abortion abroad. Policy barriers, medical system barriers, as well as financial barriers may interact to delay access to care for people in European countries with broad grounds for abortion access in the first trimester but restrictions thereafter, especially for people later in pregnancy. [ABSTRACT FROM AUTHOR]

Background: The National Health Service (NHS) and general practice are increasingly adopting digital services. These services can impact both positively and negatively upon patient experiences, and access to digital services is not equal amongst all groups. Within a wider project examining digital facilitation (the Di-Facto study) our team conducted a patient survey amongst English primary care practices aiming to investigate patient views of what supports uptake and use of web-based services. This paper reports on the analysis of the free-text responses from the patient survey. Methods: The Di-Facto patient survey was distributed to practices in eight clinical commissioning groups (CCGs) in England between 2021–2022. We examined free-text responses to two questions relating to access to primary care web-based and support for web-based services. We used qualitative reflexive thematic analysis based on a six-stage process to analyse responses. Results: Of the 3051 patients who responded to the Di-Facto survey, 2246 provided a free-text response. We present our findings in two major themes: systems and structures and their impact on use of web-based services, and 'what works for me', a description of how respondents described what worked, or did not work in terms of their interactions with web-based services. Respondents described how the technology, such as poor practice website design, confusion over multiple digital apps, data security and concerns about eConsultation offerings impacted on use of web-based services. Respondents described practice level barriers, such as a lack of or inconsistent provision, which prevented optimal use of web-based services. Respondents described personal and technical barriers that impacted on their use of digital services, and described which web-based services worked well for them. Respondents felt that web-based services were not a replacement for face-to-face interactions with a doctor. Conclusions: This analysis of free-text responses from a large patient survey highlights the system, practice, and person level barriers and facilitators to use of digital services in primary care. With an increasing push towards digital solutions in NHS primary care, practices should consider the design, rollout and communication of their web-based services to support patient access. [ABSTRACT FROM AUTHOR]

Introduction: Co‐production with communities is increasingly seen as best practice that can improve the quality, relevance and effectiveness of research and service delivery. Despite this promising position, there remains uncertainty around definitions of co‐production and how to operationalize it. The current paper describes the development of a co‐production strategy to guide the work of the ActEarly multistakeholder preventative research programme to improve children's health in Bradford and Tower Hamlets, UK. Methods: The strategy used Appreciative Inquiry (AI), an approach following a five‐step iterative process: to define (Step 1) scope and guide progress; to discover (Step 2) key issues through seven focus groups (N = 36) and eight in‐depth interviews with key stakeholders representing community groups, and the voluntary and statutory sectors; to dream (Step 3) best practice through two workshops with AI participants to review findings; to design (Step 4) a co‐production strategy building on AI findings and to deliver (Step 5) the practical guidance in the strategy. Results: Nine principles for how to do co‐production well were identified: power should be shared; embrace a wide range of perspectives and skills; respect and value the lived experience; benefits should be for all involved parties; go to communities and do not expect them to come to you; work flexibly; avoid jargon and ensure availability of the right information; relationships should be built for the long‐term; co‐production activities should be adequately resourced. These principles were based on three underlying values of equality, reciprocity and agency. Conclusion: The empirical insights of the paper highlight the crucial importance of adequate resources and infrastructure to deliver effective co‐production. This documentation of one approach to operationalizing co‐production serves to avert any misappropriations of the term 'co‐production' by listening to service users, stakeholders and other relevant groups, to develop trust and long‐term relationships, and build on the learning that already exists amongst such groups. Patient or Public Contribution: The work was overseen by a steering group (N = 17) of individuals, both professional and members of the public with experience in undertaking co‐production, and/or with some knowledge of the context of the two ActEarly field sites, who provided regular oversight and feedback on the AI process. [ABSTRACT FROM AUTHOR]

Background: Involving communities in research priority setting can increase the relevance and efficiency of research, leading to better health outcomes. However these exercises often lack clarity in how communities are involved and the extent to which priorities are acted upon is unclear. Seldom-heard groups, for example ethnic minorities may experience barriers to participation. We report methods and outcomes of an inclusive co-produced community research priority setting exercise within the multicultural and deprived city of Bradford, UK. The aim was to identify priorities for keeping children happy and healthy and was undertaken by the Born in Bradford (BiB) research programme to inform future research agendas. Methods: A 12 member multi-disciplinary, multi-ethnic community steering group led the process using a modified James Lind Alliance approach between December 2018-March 2020. Research priorities were collected through a widely distributed paper and online survey. Respondents were asked to list three important things to keep children i) happy, ii) healthy and what needs to change to improve either health or happiness. Free text data were coded iteratively by community researchers, and shared priorities were co-produced in a series of workshops and meetings with the community steering group and community members. Results: Five hundred eighty-eight respondents to the survey identified 5748 priorities, which were coded into 22 themes. These covered a range of individual, social and wider socioeconomic, environmental and cultural priorities. Diet/nutrition and exercise were most commonly identified as important for health, including what needs to change to improve health. For happiness, home life and family relationships, listening to children, and education/activities were the most commonly identified. Community assets were identified as important to change for both health and happiness. From the survey response the steering group developed 27 research questions. There were mapped onto existing and planned research agendas within BiB. Conclusions: Communities identified both structural and individual factors as important priorities for health and happiness. We demonstrate how communities can be involved in priority setting using a co-productive approach in the hope this can be used as a model for others. The resulting shared research agenda will shape future research to improve the health of families living in Bradford. [ABSTRACT FROM AUTHOR]

Social enterprises, which are businesses with social objectives, have been championed by the UK government as an opportunity to deliver more innovative, socially oriented, and commercially sustainable public services. However, very little is known about them, especially in a social care context. This paper therefore aims to answer the following three questions: (1) What are care social enterprises?, (2) What are their distinctive qualities?, and (3) How can they contribute to the adult social care sector? It presents evidence from a "mapping" of care social enterprises in three English local authorities, and from interviews with 35 stakeholders from across the social care and social enterprise sectors. Drawing on an institutional logics framework, we explore the influence of different norms, goals, and practices on care social enterprises and the extent to which they are aligned with those of the public, private, and not-for-profit sectors. We found that their unique combination of business and social logics, along with an entrepreneurial mindset, may make them more flexible, innovative, and able to diversify their income than public and not-for-profit care organisations. They were also considered more trustworthy than private care services. However, their competing social and business logics can create internal tensions and bring uncertainty about what organisational model they are. These tensions can make it challenging for us to define what a care social enterprise is and in turn for social enterprises to promote themselves and attract funding. [ABSTRACT FROM AUTHOR]

Background: Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom‐heard voices, to ensure that a range of voices are heard and that research is meaningful to them. Objective: We explored how researchers involve and engage seldom‐heard communities around big data research. Methods: This is a qualitative study. Researchers who had experience of involving or engaging seldom‐heard communities in big data research were recruited. They were based in England (n = 5), Scotland (n = 4), Belgium (n = 2) and Canada (n = 1). Twelve semistructured interviews were conducted on Zoom. All interviews were audio‐recorded and transcribed, and we used reflexive thematic analysis to analyse participants' experiences. Results: The analysis highlighted the complexity of involving and engaging seldom‐heard communities around big data research. Four themes were developed to represent participants' experiences: (1) abstraction and complexity of big data, (2) one size does not fit all, (3) working in partnership and (4) empowering the public contribution. Conclusion: The study offers researchers a better understanding of how to involve and engage seldom‐heard communities in a meaningful way around big data research. There is no one right approach, with involvement and engagement activities required to be project‐specific and dependent on the public contributors, researchers' needs, resources and time available. Patient and Public Involvement: Two public contributors are authors of the paper and they were involved in the study design, analysis and writing. [ABSTRACT FROM AUTHOR]

Women experiencing three or more co-occurring issues (homelessness, substance misuse, mental health) are a highly vulnerable population associated with multimorbidity. Taking women's life stories of trajectories into social exclusion in the north of England as its focus, this paper aims to explore the complexity of social contexts in which women navigate extreme health inequalities. Of the few studies that have examined women's experiences of homelessness through the lens of social capital, most have focused on network size, rather than the quality and influence of the relationships which precipitate or contextualise experiences of social exclusion. We utilise case studies to offer a theoretically-grounded analysis which illustrates the relationship between social capital and homelessness within this population. Our results illustrate how structural contexts, and specifically social capital accrual and social bonding processes particularly pertinent to women can act to both ameliorate and perpetuate social exclusion. We conclude by arguing that health inequalities cannot be tackled as single-issue processes but instead are multi-layered and complex. [ABSTRACT FROM AUTHOR]

BACKGROUND: A greater understanding of Over the Counter (OTC) and Prescription Only Medication (POM) misuse amongst adults accessing substance misuse services (SMS) during COVID-19 is required to identify how SMS can better meet the needs of the people who require treatment. AIM: To use a questionnaire to explore OTC/POM misuse during COVID-19 in adults accessing community SMS in England. METHODS: In 2020 to 2021 anonymous self-administered online/paper questionnaires which collated quantitative and qualitative data were completed. They were piloted for suitability and ethical approval was obtained. Thematic analysis was conducted for qualitative data and chi-square tests used to assess the relationship between quantitative variables. RESULTS: Participants were Caucasian (94.6% British), majority male (58.9%), aged 18 to 61 years. Most were prescribed medication for problematic substance use, with a 92.5% self-reported adherence rate. The misuse of benzodiazepines (22.2%) codeine products (30.8%) and pregabalin (14.5%) predominated and 37.5% misused 2 or more medicines. Administration was usually oral and concomitant use of other substances was common: alcohol 44.6% (52% daily), tobacco/vaping 73.2% and illicit substances 58.9%. There were statistically significant associations identified, including between changes during COVID-19 to OTC/POM misuse and illicit use. Only 56 questionnaires were included in the analysis: we believe this low number was because of infection control measures, limited footfall in services, pressures on staff limiting their capacity to distribute the paper questionnaires and reliance upon telephone consultations limiting online distribution. Increasing OTC/POM misuse and obtaining illicit supplies were reported when access to usual supplies were restricted; however, changes to doses/dispensing arrangement liberalisation in response to COVID-19 were positively viewed. CONCLUSION: OTC/POM misuse, including polypharmacy and concomitant use of other substances occurred during COVID-19: SMS need to be vigilant for these issues and mitigate the associated risks for example with harm reduction interventions. Further qualitative research is required to explore the issues identified. [ABSTRACT FROM AUTHOR]

This paper examines the relationship between the prevalence of the urgent and emergency care vanguard (UEC) at the local authority level and their delayed transfers of care (DTOC) rates in England. We created a novel measure of exposure to UEC vanguards based on the residence of patients who used UEC partner hospitals, and we group it by the level of exposure (high, medium, low, none). We use this measure to estimate the effect of UEC vanguards on DTOC rates and then on DTOC rates by sector and a range of reasons associated with the delay. The analysis was run at the local authority level (LA) using quarterly data from NHS England for 150 English LAs from the years 2012–2017. We find a statistically significant UEC exposure effect of around 0.3% reduction in total DTOC to a 1% increase of UEC exposure (equivalent to 775 DTOC days per local authority per quarter in high UEC exposure areas), a result robust to various specification checks. Nonacute sector DTOC was found to be more responsive to UEC vanguards in comparison to acute sector DTOC (0.4% and 0.3% reductions, respectively, to every 1% of UEC exposure). DTOC due to social care was particularly responsive to UEC exposure (0.7% reduction to 1% exposure). DTOC reasons associated with the highest impact of UEC exposure were as follows: awaiting a care package at own home, waiting for further NHS nonacute care, and completion of assessment (reductions of 0.5%, 0.3%, and 0.3% to 1% exposure, respectively). All three reasons were originally associated with the largest number of DTOC days. These findings further advocate for UEC vanguards having been successful at alleviating the pressure on hospitals related to DTOC. [ABSTRACT FROM AUTHOR]

Aim: To explore higher education institution (HEI) perspectives on the development and implementation of trainee nursing associates (NAs) in the primary care workforce in England. Background: Current shortages of primary health care staff have led to innovative skill mix approaches in attempts to maintain safe and effective care. In England, a new level of nursing practice, NAs, was introduced and joined the workforce in 2019. This role was envisaged as a way of bridging the skills gap between health care assistants and registered nurses and as an alternative route into registered nursing. However, there is limited evidence on programme development and implementation of trainee NAs within primary care settings and HEI perspectives on this. Methods: This paper draws from a larger qualitative study of HEI perspectives on the trainee NA programme. Twenty-seven staff involved in training NAs, from five HEIs across England, were interviewed from June to September 2021. The interview schedule specifically included questions relating to primary care. Data relating to primary care were extracted and analysed using a combined framework and thematic analysis approach. Findings: Three themes were developed: 'Understanding the trainee role and requirements', 'Trainee support in primary care' and 'Skills and scope of practice'. It is apparent that a more limited understanding of the NA programme requirements can lead to difficulties in accessing the right support for trainees in primary care. This can create challenges for trainees in gaining the required competencies and uncertainty in understanding what constitutes a safe scope of practice within the role for both employers and trainees. It might be anticipated that as this new programme becomes more embedded in primary care, a greater understanding will develop, support will improve and the nature and scope of this new level of practice will become clearer. [ABSTRACT FROM AUTHOR]

Background: Obesity rates are higher among people of lower socioeconomic status. While numerous health behaviour interventions targeting obesity exist, they are more successful at engaging higher socioeconomic status populations, leaving those in less affluent circumstances with poorer outcomes. This highlights a need for more tailored interventions. The aim of this study was to enhance an existing weight loss course for adults living in low socioeconomic communities. Methods: The Behaviour Change Wheel approach was followed to design an add‐on intervention to an existing local authority‐run weight loss group, informed by mixed‐methods research and stakeholder engagement. Results: The COM‐B analysis of qualitative data revealed that changes were required to psychological capability, physical and social opportunity and reflective motivation to enable dietary goal‐setting behaviours. The resulting SMART‐C booklet included 6 weeks of dietary goal setting, with weekly behavioural contract and review. Conclusion: This paper details the development of the theory‐ and evidence‐informed SMART‐C intervention. This is the first report of the Behaviour Change Wheel being used to design an add‐on tool to enhance existing weight loss services. The process benefitted from a further checking stage with stakeholders. [ABSTRACT FROM AUTHOR]