Hospital admissions for physical health and psychosocial adversity among people experiencing homelessness in England: a population-based retrospective cross-sectional study.

BACKGROUND: Homeless health care is often characterised by physical health, mental health, and substance use problems, resulting in high use of emergency care, poor outcomes, and extreme social inequities. We assessed health needs as prevention opportunities for hospitalised people experiencing homelessness (PEH) in England. METHODS: This population-based retrospective cross-sectional study used anonymised national Hospital Episodes Statistics Admitted Patient Care data. PEH were identified as having at least one homeless code ("no fixed abode", "registered with a homeless-exclusive GP practice", "clinical diagnosis of homelessness") from April 1, 2017, to March 31, 2018. We analysed admissions for PEH and for housed people. We estimated the prevalence of demographic and admission characteristics and diagnoses by 10th International Classification of Disease (ICD-10) chapter. We developed novel diagnostic phenotypes for physical health (internal disease processes) and psychosocial adversity (mental health, substance use, violence, and social factors). We compared admissions between PEH and housed people using sex-stratified logistic regression adjusted for age and ethnicity. FINDINGS: There were 15 566 010 admissions (51 643 PEH and 15 514 367 housed people). Compared with housed people, proportionately more PEH were younger (PEH aged 26-45 years, n=24 224 [46·9%], housed people n=3 323 951 [21·4%]), male (PEH n=37 662 [72·9%], housed people n=6 819 157 [44·0%]), and not White British (PEH n=14 605 [28·3%], housed people n=3 447 183 [22·2%]). Emergency admissions were more common among PEH (PEH male n=30 958 [82·2%], housed people male n=5 321 428 [34·3%], adjusted odds ratio [aOR] 8·76, 95% CI 8·53-9·00). The most common primary diagnoses by ICD-10 chapter for PEH were mental and behavioural conditions (PEH male n=7118 admissions [18·9%], housed people male n=155 144 [1·0%], 12·97, 12·61-13·34). Admissions for the psychosocial adversity phenotype were higher in PEH, particularly for women (PEH female n=3922 [28·1%], housed people female n=155 644 [1·79%], 18·18, 17·50-18·88). Physical health phenotype admissions were less common in PEH (PEH male n=7510 [19·9%], housed people male n=1 821 397 [26·7%], 0·91, 0·89-0·94), but specific infections, cancers, respiratory, and cardiovascular diseases were more common among PEH for both men and women. INTERPRETATION: These results support targeting of preventative interventions for PEH before, during and after admission to hospital, highlighting psychosocial needs. Future research should aim to produce reliable estimates of the size of the national homeless population to enable calculation of admission rates for psychosocial and physical health diagnoses. FUNDING: National Institute for Health and Care Research (NIHR).

Lessons learned from co-production in public health research: the MAMAH case study involving underserved migrant mothers in the UK.

BACKGROUND: Research suggests some migrant women are at increased risk of mortality and morbidity in the perinatal period; however, there is a gap in co-produced research to improve care. The UK National Institute for Health and Care Research (NIHR) defines co-production as "an approach in which researchers, practitioners, and members of the public work together, sharing power and responsibility". We summarise learnings from our study, which aimed to co-produce solutions to improve maternity care for migrant women in the UK, by working with women to identify the most important research priorities. METHODS: We recruited 18 underserved migrant women living in the UK who had given birth in the UK within the past 15 years to create a patient advisory panel. They were recruited via national and local non-governmental organisations and snowball sampling using purposive methods to ensure representation from a range of backgrounds, including those who were refugees, asylum seekers, and undocumented. Underserved was defined as asylum seeking, refugee, undocumented, or low-income mothers (those who were experiencing homelessness or in receipt of welfare support). The women are involved in conceptualisation, analysis, and dissemination of the project. The project is a UK National Institute of Health and Care Research (NIHR) Doctoral Fellowship project lasting 3 years with a variety of research workstreams. FINDINGS: The research funding application process began in January, 2021, and the project was funded and began in November, 2022. The research team struggled to access comprehensive training on co-production, particularly in how to counter power dynamics. We appointed a Lead Patient Advisor who manages the relationship between the academics and the patient advisors. Additionally, we reimburse women's time, childcare, and travel. We have found that online meetings are preferable, as women do not need to travel or arrange childcare. We meet our patient advisory panel four times per year. Some women have been directly involved in research such as systematic review screening and qualitative interviewing and have been given research training. Our initial research priorities did not align with those of the women, and this helped us to reshape our work. Women said that having a Lead Patient Advisor made it easier to participate, particularly as some issues are traumatic. To mitigate this, we have offered support resources and debriefing. Using online interpreters has been challenging, and we have recently split into different language groups to maximise engagement. INTERPRETATION: Overall, as researchers, we have learned that taking a truly co-produced approach is time-consuming but has ensured our research prioritises the views of migrant women giving birth in the UK. FUNDING: National Institute for Health and Care Research (NIHR).

Perspectives on registration to primary care from inclusion health groups in England: a mixed-method study.

BACKGROUND: Although everyone living in the UK is entitled to access free primary care within the National Health Service (NHS), evidence shows that people in need of health care are wrongly being refused access. This study aimed to explore the perspectives of individuals from inclusion health groups on primary care registration and accessibility. METHODS: This was a mixed-methods study. From Oct 5, 2022, to Feb 20, 2023, we surveyed 49 people (36 [73%] men; 12 [24%] women) and interviewed 25 other (14 [56%] men; 11 [44%] women) who were service users of the University College London Hospital Find & Treat mobile service. This service included people with lived experience of homelessness, asylum seeking, addiction, selling sex, and irregular immigration. We recruited these participants through hostels for people with ongoing addiction and complex needs, initial asylum accommodation centres, and day shelters. Our research team included two peer researchers. FINDINGS: Of those surveyed, 25 (51%) perceived their access to primary health-care services as good, and 17 (35%) reported obstacles to going to the general practitioner (GP). Participants described multiple barriers to registering for GP surgeries, including a lack of understanding and poor communication with NHS services, a fear of discrimination, and a lack of digital access that prevents information seeking and access to services. Respondents also reported using emergency services instead of primary care because they were more immediately accessible without previous registration. Facilitators to GP registration included one-on-one support and outreach work that helps people navigate into services and know their rights, and the use of specialist GP services, which are perceived as more accepting, especially for people experiencing homelessness. INTERPRETATION: The barriers to registration identified are related to both individual and group level characteristics and produce both similar and divergent needs between different inclusion health groups. The need for additional support during registration was clear, and our work highlights the requirement for interventions to improve access to primary care for underserved groups, as well as coordinated policy action. One-on-one support in particular, either outreach or provided in services where inclusion health groups spend time, appears to be a key facilitator to ensuring comprehensive and fast access to GP services. FUNDING: National Institute for Health and Care Research (NIHR).

Barriers and facilitators of self-management of diabetes amongst people experiencing socioeconomic deprivation: A systematic review and qualitative synthesis.

BACKGROUND: The number of people living with diabetes is rising worldwide and a higher prevalence of diabetes has been linked to those experiencing socioeconomic deprivation. Self-management strategies are vital and known to reduce the risks of long-term complications amongst people living with diabetes. Lack of knowledge about self-care activity required to manage diabetes is a key barrier to successful self-management. Self-management interventions can be less effective in socioeconomically deprived populations which can increase the risk of exacerbating health inequalities. The purpose of this review is to identify and synthesise qualitative evidence on the barriers and facilitators of self-management of diabetes amongst people who are socioeconomically disadvantaged. METHODS: MEDLINE, EMBASE, AMED, PsycINFO and CINAHL Plus were searched for qualitative studies concerning self-management of multiple long-term conditions amongst socioeconomically disadvantaged populations. Relevant papers which focused on diabetes were identified. Data were coded and thematically synthesised using NVivo. FINDINGS: From the search results, 79 qualitative studies were identified after full-text screening and 26 studies were included in the final thematic analysis. Two overarching analytical themes were identified alongside a set of subthemes: (1) Socioeconomic barriers to diabetes self-management; healthcare costs, financial costs of healthy eating, cultural influences, living in areas of deprivation, competing priorities and time constraints, health literacy, (2) facilitators of diabetes self-management; lifestyle and having goals, support from healthcare providers, informal support. DISCUSSION: Self-management of diabetes is challenging for people experiencing socioeconomic deprivation due to barriers associated with living in areas of deprivation and financial barriers surrounding healthcare, medication and healthy food. Support from healthcare providers can facilitate self-management, and it is important that people with diabetes have access to interventions that are designed to be inclusive from a cultural perspective as well as affordable. PATIENT OR PUBLIC CONTRIBUTION: A patient advisory group contributed to the research questions and interpretation of the qualitative findings by reflecting on the themes developed.

A qualitative exploration of the barriers and facilitators to self-managing multiple long-term conditions amongst people experiencing socioeconomic deprivation.

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 importa. 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.

Effectiveness of self-management interventions for long-term conditions in people experiencing socio-economic deprivation in high-income countries: a systematic review and meta-analysis.

BACKGROUND: Long-term conditions (LTCs) are prevalent in socio-economically deprived populations. Self-management interventions can improve health outcomes, but socio-economically deprived groups have lower participation in them, with potentially lower effectiveness. This review explored whether self-management interventions delivered to people experiencing socio-economic deprivation improve outcomes. METHODS: We searched databases up to November 2022 for randomized trials. We screened, extracted data and assessed the quality of these studies using Cochrane Risk of Bias 2 (RoB2). We narratively synthesized all studies and performed a meta-analysis on eligible articles. We assessed the certainty of evidence using GRADE for articles included in the meta-analysis. RESULTS: The 51 studies included in this review had mixed findings. For the diabetes meta-analysis, there was a statistically significant pooled reduction in haemoglobin A1c (-0.29%). We had moderate certainty in the evidence. Thirty-eight of the study interventions had specific tailoring for socio-economically deprived populations, including adaptions for low literacy and financial incentives. Each intervention had an average of four self-management components. CONCLUSIONS: Self-management interventions for socio-economically deprived populations show promise, though more evidence is needed. Our review suggests that the number of self-management components may not be important. With the increasing emphasis on self-management, to avoid exacerbating health inequalities, interventions should include tailoring for socio-economically deprived individuals.

The Use of Digital Health Interventions for Cardiometabolic Diseases Among South Asian and Black Minority Ethnic Groups: Realist Review.

BACKGROUND: Digital health interventions (DHIs) for the prevention and management of cardiometabolic diseases have become increasingly common. However, there is limited evidence for the suitability of these approaches in minority ethnic populations, who are at an increased risk of these diseases. OBJECTIVE: This study aimed to investigate the use of DHIs for cardiovascular disease and type 2 diabetes among minority ethnic populations in countries with a majority of White, English-speaking populations, focusing on people who identified as South Asian, Black, or African American. METHODS: A realist methodology framework was followed. A literature search was conducted to develop context-mechanism-outcome configurations, including the contexts in which DHIs work for the target minority ethnic groups, mechanisms that these contexts trigger, and resulting health outcomes. After systematic searches, a qualitative analysis of the included studies was conducted using deductive and inductive coding. RESULTS: A total of 15 studies on the uptake of DHIs for cardiovascular disease or diabetes were identified, of which 13 (87%) focused on people with an African-American background. The review found evidence supporting the use of DHIs in minority ethnic populations when specific factors are considered in implementation and design, including patients' beliefs, health needs, education and literacy levels, material circumstances, culture, social networks, and wider community and the supporting health care systems. CONCLUSIONS: Our context-mechanism-outcome configurations provide a useful guide for the future development of DHIs targeted at South Asian and Black minority ethnic populations, with specific recommendations for improving cultural competency and promoting accessibility and inclusivity of design.

Communicating decisions about care with patients and companions in emergency department consultations.

INTRODUCTION: This paper explores doctor-patient and companion communication about care decisions in a UK emergency department (ED). Doctors interface between patients and healthcare systems and facilitate access to care across a range of encounters, drawing on information and authority to make and communicate clinical care decisions. MATERIALS AND METHODS: We explored characteristics of communication through ethnographic observation of 16 video-recorded case studies of ED consultations (average length: 1 h) collected over 6 months. Companions were present in 10 cases. We conducted a framework analysis to understand the roles of doctors, consultants, patients and companions in relaying ED care decisions. FINDINGS: We present two cases to reflect companion roles and their effect on the consultation. The urgency for care and scarcity of resources means clinicians justify decisions and strategize to move patients along ED pathways. DISCUSSION: Everyday care interactions between patients and doctors are goal-oriented and companions participate by providing case information, querying decisions and advocating for care. Our findings reflect how doctors justify decisions made in communicating the next steps in ways that characterize the clinical encounter. CONCLUSION: By exploring everyday interactions our study contributes to a growing understanding of patient-clinician and companion communication in the ED. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers voluntarily participated in data collection and consented to video recordings being conducted of ED consultations between them and junior doctors. There was extensive consultation with all grades of staff about the acceptability of the work and the best way to conduct it to minimize the impact on patients and staff. Through this manuscript, we have demonstrated the presence and important role of companions. On reflection it would have been valuable to have included patients and companions in discussions about the work; however, this project was conducted with very limited funding and no resources were committed to patient and public involvement. Given the setting and scope of the study, it was not feasible to involve patients or members of the public in other stages of the research or preparation of the manuscript. We recognize this as a potential limitation of the work.

Insights into the social context of living with a dual diagnosis of HIV and cancer: a qualitative, thematic analysis of popular discourse in London newspapers.

As growing numbers of people living with HIV also develop cancer, a holistic understanding of their experiences is essential to the provision of patient centred care. Both conditions are linked to powerful beliefs in our society that may affect experiences. This study explored how HIV and cancer were represented in UK newspapers to gain insight into the social context of living with a dual diagnosis. We performed an initial content analysis of HIV articles and of cancer articles published in the free London newspapers, The Metro and The Evening Standard between 2012 and 2017, followed by qualitative thematic analysis and in-depth analysis of selected articles of exemplar cases. Both conditions were presented very differently. The underlying subtext was that cancer could happen to any of us. HIV was framed as a potentially dangerous, stigmatising phenomenon affecting "others". Popular discourse about HIV within news media remains largely negative and stigmatising. People living with a dual diagnosis of HIV and cancer may choose to prioritise the sharing of the more socially acceptable condition, cancer, in order to access support. The negotiation of cancer healthcare services is likely to be adversely influenced by the social burden of HIV related stigma.

HIV positive and treated for cancer: The convergence of pressures "invisible" in HIV and "visible" in cancer.

OBJECTIVE: An increasing number of people living with HIV are living longer and experiencing a dual diagnosis of HIV and cancer. Little is known of their experience and quality of care. This paper presents the findings of a study exploring experiences of cancer care, from the perspectives of both patients and healthcare professionals. METHODS: Thematic analysis of participant narratives provided in longitudinal, semi-structured interviews with 17 people, recruited from three London sites between 2015 and 2017. Focused ethnography comprising 27 hr of participant observation and seven semi-structured interviews with healthcare professionals. RESULTS: Both HIV and cancer have a powerful, combined impact; in cancer, the impact is visible; in HIV, it is generally hidden. Patients and staff experienced particular challenges in the cancer setting. Patients felt responsible for their HIV management and described being excluded from clinical trials. Both staff and patients encountered difficulties around the management of information relating to HIV. CONCLUSION: This dual diagnosis has a profound and negative effect on patients' experiences and potential outcomes. Improvement depends on interventions that acknowledge the shared social narrative and impact of HIV-related stigma so that this burden is not carried by the patient alone.

The experiences of people bereaved by suicide regarding the press reporting of the death: qualitative study.

BACKGROUND: Media guidelines on suicide reporting of suicide have two purposes: to prevent further suicides, and to minimise distress to the bereaved, who are themselves at increased risk of suicide. We aimed to describe the subjective experiences of people bereaved by suicide regarding media reporting of the suicide of their friend or relative. METHODS: We conducted a cross-sectional study of staff and students aged 18-40 at 37 United Kingdom higher educational institutions in 2010 to recruit adults who had experienced bereavement by the suicide of a close contact. We analysed free-text responses to a question probing experiences of the press after the suicide, using thematic analysis to identify key themes. RESULTS: We analysed responses from 140 eligible respondents, and identified 3 main themes: value placed on respecting the privacy or wishes of the bereaved; respect accorded to the deceased; and the role of the press in promoting suicide prevention messages. Many respondents described negative experiences of the press, with sub-themes capturing distressing experiences relating to perceptions of journalists' intrusive behaviour, failure to consult appropriately with the bereaved, journalists releasing private information, negatively misrepresenting the deceased, and breaching the anonymity of the deceased or bereaved. We identified considerable variation in people's views over acceptable levels of detail reported in the press, and in some cases objections were in relation to journalists following media guidelines. These divergent views illustrate the tensions between the twin purposes of media guidelines: to prevent further suicides, and to protect the bereaved. CONCLUSIONS: The findings from our British sample provide journalists with personal perspectives from bereaved relatives on the impact of media intrusion, speculation, and misrepresentation, and an insight into disparate views on the nature of information relatives feel comfortable disclosing. These findings suggest a need for journalists' training to include exposure to such views, to heighten awareness of potentially distressing effects and the nuances of bereaved people's preferences. This should aim to encourage journalists to consult with bereaved relatives more sensitively, whilst also remaining mindful of media guidelines on the reporting of suicide.

General Practitioner's use of online resources during medical visits: managing the boundary between inside and outside the clinic.

In an increasingly connected world, information about health can be exchanged at any time, in any location or direction, and is no longer dominated by traditional authoritative sources. We consider the ways information and advice given in consultations by doctors transcends the boundary between the clinic and the home. We explore how information that is widely accessible outside the consultation is transformed by General Practitioners (GPs) into a medical offering. Data comprise 18 consultations identified from 144 consultations between unselected patients and five GPs. We use conversation analytic methods to explore four ways in which GPs used online resources; (i) to check information; (ii) as an explanatory tool; (iii) to provide information for patients for outside the consultation; (iv) to signpost further explanation and self-help. We demonstrate the interactional delicacy with which resources from the Internet are introduced and discussed, developing and extending Nettleton's (2004) idea of 'e-scaped medicine' to argue that Internet resources may be 'recaptured' by GPs, with information transformed and translated into a medical offering so as to maintain the asymmetry between patients and practitioners necessary for the successful functioning of medical practice.

Searching for Information on the Risks of Combined Hormonal Contraceptives on the Internet: A Qualitative Study Across Six European Countries.

BACKGROUND: Searching for health information online is increasingly common and is an obvious source of information about oral combined hormonal contraceptives (CHCs) and their risks. However, little is known about how publicly available websites address the risks of CHCs, particularly venous thromboembolism (VTE). OBJECTIVE: The aim was to explore the information available to women about VTE and other risks of CHCs on websites available through commonly used search engines. METHODS: A qualitative study was conducted to explore whether and how websites about CHCs in Denmark, Germany, Netherlands, Slovakia, Spain, and the United Kingdom make reference to VTE and other CHC risks. A systematic search procedure was adopted across the six countries, based on relevant keywords. The search was carried out using the Google search engine by fluent/native speakers of each language. A content analysis approach was conducted to extract information from the selected websites. RESULTS: A total of 357 websites were reviewed. Nearly all (343/357, 96.1%) the websites mentioned VTE as a risk of CHCs, with approximately half referring to other side effects as well. One-fifth (92/357, 25.8%) of the websites provided suggestions about the best contraceptive method to use, and only a minority (23/357, 6.4%) recommended women discuss CHCs with their health professionals. Sites were generally run by the media (110/357 30.8%) or medical services from nongovernmental organizations (140/357, 39.2%). Only a minority of websites referred to organizations such as the European Medicines Agency (11/357, 3.1%). CONCLUSIONS: Despite the large number of websites containing information about oral CHCs and their risks, particularly VTE, only a limited number referred to information from accredited health agency sources. We argue this is a missed opportunity for accredited health agencies to share high-quality information to assist women using CHCs to make informed decisions about contraception.

Exploring the views and experiences of HIV positive patients treated for cancer: a systematic review of the literature.

A systematic review of the literature was conducted to find out what is known about patients' experiences of a dual diagnosis of HIV and cancer. We systematically searched the following databases; MEDLINE (Ovid Version); CINAHL Plus; PsycINFO and EMBASE from inception to June 2016 for studies that included patients with a dual diagnosis of cancer and HIV and focused on patient experiences. Studies with a focus on one illness rather than a dual diagnosis, those that focused on treatment strategies and medical management, epidemiology and pathology studies and comparison studies were all excluded. The full text of the included studies were reviewed. Information on location, sample size, study design and a narrative summary of findings were extracted using a standardised format. Studies were combined thematically. 1777 records were screened by title and abstract using the selection criteria described in the methods. Eight records were reviewed in depth in full text and seven selected as eligible. The selected studies suggest that a dual diagnosis of HIV and cancer has a powerful impact on individuals' behaviour. The experience of stigma was a consistent factor in all patient accounts and the strategy of selective disclosure to access support reveals how patient agency can interplay with stigma. This is an area largely unexplored in the published literature; further research into patients' experiences of a dual diagnosis of HIV and cancer will provide relevant knowledge in order to tailor and improve services.

Developing an implementation strategy for a digital health intervention: an example in routine healthcare.

BACKGROUND: Evidence on how to implement new interventions into complex healthcare environments is often poorly reported and indexed, reducing its potential to inform initiatives to improve healthcare services. Using the implementation of a digital intervention within routine National Health Service (NHS) practice, we provide an example of how to develop a theoretically based implementation plan and how to report it transparently. In doing so we also highlight some of the challenges to implementation in routine healthcare. METHODS: The implemented intervention was HeLP-Diabetes, a digital self-management programme for people with Type 2 Diabetes, which was effective in improving diabetes control. The target setting for the implementation was an inner city London Clinical Commissioning Group in the NHS comprised of 34 general practices. HeLP-Diabetes was designed to be offered to patients as part of routine diabetes care across England. Evidence synthesis, engagement of local stakeholders, a theory of implementation (Normalization Process Theory), feedback, qualitative interviews and usage data were used to develop an implementation plan. RESULTS: A new implementation plan was developed to implement HeLP-Diabetes within routine practice. Individual component strategies were selected and developed informed by Normalization Process Theory. These strategies included: engagement of local opinion leaders, provision of educational materials, educational visits, educational meetings, audit and feedback and reminders. Additional strategies were introduced iteratively to address barriers that arose during the implementation. Barriers largely related to difficulties in allocating resources to implement the intervention within routine care. CONCLUSION: This paper provides a worked example of implementing a digital health intervention. The learning from this work can inform others undertaking the work of planning and executing implementation activities in routine healthcare. Of particular importance is: the selection of appropriate theory to guide the implementation process and selection of strategies; ensuring that enough attention is paid to planning implementation; and a flexible approach that allows response to emerging barriers.

Digital Health Interventions for Adults With Type 2 Diabetes: Qualitative Study of Patient Perspectives on Diabetes Self-Management Education and Support.

BACKGROUND: The prevalence of type 2 diabetes is increasing globally, and health services in many countries are struggling with the morbidity, mortality, and costs associated with the complications of this long-term condition. Diabetes self-management education (DSME) and behavioral support can reduce the risks of developing diabetes-related complications and improve glycemic control. However, their uptake is low. Digital health interventions (DHI) can provide sustained support and may overcome challenges associated with attending diabetes self-management sessions. They have the potential for delivery at multiple locations at convenient times, anonymity, and presentation of content in attractive and tailored formats. This study investigates the needs and wants of patients with type 2 diabetes to inform the development of digital self-management education and support. OBJECTIVE: The objective of this study was to explore patient perspectives on unmet needs for self-management and support and the role of DHI in adults living with type 2 diabetes. METHODS: This study used a qualitative approach based on data generated from 4 focus groups with 20 patients. RESULTS: The data generated by the focus groups illustrated the significant burden that the diagnosis of diabetes places on many patients and the negative impacts on their emotional well-being, work, social life, and physical health. Although patients' experiences of the health care services varied, there was agreement that even the best services were unable to meet all users' needs to support the emotional regulation, psychological adjustment, and behavioral changes needed for successful self-management. CONCLUSIONS: By focusing on medical management and information provision, existing health care services and education programs may not be adequately meeting all the needs of patients with type 2 diabetes. DHIs have the potential to improve access to DSME and behavioral support and extend the range of content offered by health services to fit with a wider range of patient needs. Features that could help DHIs address some of the unmet needs described by participants in this study included placing an emphasis on emotional and role management, being available at all times, having up-to-date evidence-based guidance for patients, and providing access to peer-generated and professional advice.

Attitudes to suicide following the suicide of a friend or relative: a qualitative study of the views of 429 young bereaved adults in the UK.

BACKGROUND: People bereaved by suicide are at increased risk of suicide attempt and suicide, but explanations for these associations remain theoretical. It is possible that the experience of suicide bereavement modifies personal attitudes towards suicide, but the nature of these changes remains unexplored. There is a need to understand personal attitudes to suicide following suicide bereavement, as this may inform the development of suicide prevention interventions. Our aim was to explore the attitudes of young adults bereaved by suicide towards their own likelihood of dying by suicide. METHODS: We conducted a cross-sectional study of staff and students aged 18-40 at 37 United Kingdom (UK) higher educational institutions in 2010. Ethical approval was granted by the UCL Research Ethics Committee. Qualitative responses to a question probing attitudes to own suicide were provided by 429 respondents who had experienced bereavement by the suicide of a close contact. We identified key themes in this dataset using thematic analysis. RESULTS: Analysis identified four main themes: suicide as a more tangible option (whether feared or not); identification with the deceased and awareness of shared vulnerabilities to suicide; personal determination to avoid suicide; and beliefs regarding safeguards against suicide. These themes reflected a broad split in participants' views regarding own likelihood of dying by suicide, influenced by the degree to which own suicide was feared and the extent to which they felt in control of determining a suicide death. Whilst the majority described an aversion to the idea of attempting suicide themselves, largely through an awareness of the impact on others, a minority described their experiences as having normalised suicide as a personal option. CONCLUSIONS: The views of a sample of UK-based adults bereaved by suicide suggest that exposure to the suicide of a close friend or relative can influence attitudes to suicide in ways that could influence own risk of suicide attempt. The normalising attitudes to suicide observed in a minority of respondents could contribute to the observed association between suicide bereavement and suicide attempt.

Negotiating the 'grey area between normal social drinking and being a smelly tramp': a qualitative study of people searching for help online to reduce their drinking.

INTRODUCTION AND AIMS: Delivering brief interventions for hazardous and harmful drinking on the Internet may broaden the availability of services and overcome some barriers to accessing help in person. The Down Your Drink (DYD) website, an extended brief intervention, attracted a large number of people looking to reduce their drinking. The aim was to explore the experiences of this e-help seeking population. METHOD: Semi-structured interviews were conducted with participants in the DYD trial - an online trial of the effectiveness of DYD compared with an information-only website. Interviewees were asked how they came across the DYD website. Interviews were recorded and transcribed verbatim. Data were analysed by a multidisciplinary team using detailed thematic analysis. RESULTS: Eighteen participants were interviewed. Most interviewees perceived their drinking to be a problem, which led them to search the Internet and register for the DYD trial in order to gain access to an intervention to help them reduce their drinking. The type of help required varied from information on the harms of drinking to help with a recognized problem. The privacy of the Internet was perceived as important when searching for help with drinking, as this avoids the stigma and embarrassment associated with help seeking in person. Almost all interviewees perceived a lack of services both online and offline for people wanting to moderate their drinking. CONCLUSION: There is a perceived gap in services for hazardous and harmful drinkers wanting to reduce their drinking which could be addressed using online interventions.

The use of electronic patient records for medical research: conflicts and contradictions.

BACKGROUND: The use of electronic patient records for medical research is extremely topical. The Clinical Practice Research Datalink (CRPD), the English NHS observational data and interventional research service, was launched in April 2012. The CPRD has access to, and facilities to link, many healthcare related datasets. The CPRD is partially based on learning from the Health Research Support Service (HRSS), which was used to test the technical and practical aspects of downloading and linking electronic patient records for research. Questions around the feasibility and acceptability of implementing and integrating the processes necessary to enable electronic patient records to be used for the purposes of research remain. METHODS: Focus groups and interviews were conducted with a total of 50 patients and 7 staff from the two English GP practices involved in piloting the HRSS, supplemented with 11 interviews with key stakeholders. Emergent themes were mapped on to the constructs of normalization process theory (NPT) to consider the ways in which sense was made of the work of implementing and integrating the HRSS. RESULTS: The NPT analysis demonstrated a lack of commitment to, and engagement with, the HRSS on the part of patients, whilst the commitment of doctors and practice staff was to some extent mitigated by concerns about issues of governance and consent, particularly in relation to downloading electronic patient records with associated identifiers. CONCLUSIONS: Although the CPRD is presented as a benign, bureaucratic process, perceptions by patients and staff of inherent contradictions with centrally held values of information governance and consent in downloading and linking electronic patient records for research remains a barrier to implementation. It is likely that conclusions reached about the problems of balancing the contradictions inherent in sharing what can be perceived as a private resource for the public good are globally transferrable.

Reconsidering 'ethics' and 'quality' in healthcare research: the case for an iterative ethical paradigm.

BACKGROUND: UK-based research conducted within a healthcare setting generally requires approval from the National Research Ethics Service. Research ethics committees are required to assess a vast range of proposals, differing in both their topic and methodology. We argue the methodological benchmarks with which research ethics committees are generally familiar and which form the basis of assessments of quality do not fit with the aims and objectives of many forms of qualitative inquiry and their more iterative goals of describing social processes/mechanisms and making visible the complexities of social practices. We review current debates in the literature related to ethical review and social research, and illustrate the importance of re-visiting the notion of ethics in healthcare research. DISCUSSION: We present an analysis of two contrasting paradigms of ethics. We argue that the first of these is characteristic of the ways that NHS ethics boards currently tend to operate, and the second is an alternative paradigm, that we have labelled the 'iterative' paradigm, which draws explicitly on methodological issues in qualitative research to produce an alternative vision of ethics. We suggest that there is an urgent need to re-think the ways that ethical issues are conceptualised in NHS ethical procedures. In particular, we argue that embedded in the current paradigm is a restricted notion of 'quality', which frames how ethics are developed and worked through. Specific, pre-defined outcome measures are generally seen as the traditional marker of quality, which means that research questions that focus on processes rather than on 'outcomes' may be regarded as problematic. We show that the alternative 'iterative' paradigm offers a useful starting point for moving beyond these limited views. SUMMARY: We conclude that a 'one size fits all' standardisation of ethical procedures and approach to ethical review acts against the production of knowledge about healthcare and dramatically restricts what can be known about the social practices and conditions of healthcare. Our central argument is that assessment of ethical implications is important, but that the current paradigm does not facilitate an adequate understanding of the very issues it aims to invigilate.