What is current care for people with Long COVID in England? A qualitative interview study.

OBJECTIVE: To investigate current care for people with Long COVID in England. DESIGN: In-depth, semistructured interviews with people living with Long COVID and Long COVID healthcare professionals; data analysed using thematic analysis. SETTING: National Health Service England post-COVID-19 services in six clinics from November 2022 to July 2023. PARTICIPANTS: 15 healthcare professionals and 21 people living with Long COVID currently attending or discharged (18 female; 3 male). RESULTS: Health professionals and people with lived experience highlighted the multifaceted nature of Long COVID, including its varied symptoms, its impact on people's lives and the complexity involved in managing this condition. These impacts encompass physical, social, mental and environmental dimensions. People with Long COVID reported barriers in accessing primary care, as well as negative general practitioner consultations where they felt unheard or invalidated, though some positive interactions were also noted. Peer support or support systems proved highly valuable and beneficial for individuals, aiding their recovery and well-being. Post-COVID-19 services were viewed as spaces where overlooked voices found validation, offering more than medical expertise. Despite initial challenges, healthcare providers' increasing expertise in diagnosing and treating Long COVID has helped refine care approaches for this condition. CONCLUSION: Long COVID care in England is not uniform across all locations. Effective communication, specialised expertise and comprehensive support systems are crucial. A patient-centred approach considering the unique complexities of Long COVID, including physical, mental health, social and environmental aspects is needed. Sustained access to post-COVID-19 services is imperative, with success dependent on offering continuous rehabilitation beyond rapid recovery, acknowledging the condition's enduring impacts and complexities.

Barriers to healthcare access and experiences of stigma: Findings from a coproduced Long Covid case-finding study.

BACKGROUND AND AIM: Long Covid is often stigmatised, particularly in people who are disadvantaged within society. This may prevent them from seeking help and could lead to widening health inequalities. This coproduced study with a Community Advisory Board (CAB) of people with Long Covid aimed to understand healthcare and wider barriers and stigma experienced by people with probable Long Covid. METHODS: An active case finding approach was employed to find adults with probable, but not yet clinically diagnosed, Long Covid in two localities in London (Camden and Merton) and Derbyshire, England. Interviews explored the barriers to care and the stigma faced by participants and were analysed thematically. This study forms part of the STIMULATE-ICP Collaboration. FINDINGS: Twenty-three interviews were completed. Participants reported limited awareness of what Long Covid is and the available pathways to management. There was considerable self-doubt among participants, sometimes reinforced by interactions with healthcare professionals (HCPs). Participants questioned their deservedness in seeking healthcare support for their symptoms. Hesitancy to engage with healthcare services was motivated by fear of needing more investigation and concerns regarding judgement about the ability to carry out caregiving responsibilities. It was also motivated by the complexity of the clinical presentation and fear of all symptoms being attributed to poor mental health. Participants also reported trying to avoid overburdening the health system. These difficulties were compounded by experiences of stigma and discrimination. The emerging themes reaffirmed a framework of epistemic injustice in relation to Long Covid, where creating, interpreting and conveying knowledge has varied credibility based on the teller's identity characteristics and/or the level of their interpretive resources. CONCLUSION: We have codeveloped recommendations based on the findings. These include early signposting to services, dedicating protected time to listening to people with Long Covid, providing a holistic approach in care pathways, and working to mitigate stigma. Regardless of the diagnosis, people experiencing new symptoms must be encouraged to seek timely medical help. Clear public health messaging is needed among communities already disadvantaged by epistemic injustice to raise awareness of Long Covid, and to share stories that encourage seeking care and to illustrate the adverse effects of stigma. PATIENT OR PUBLIC CONTRIBUTION: This study was coproduced with a CAB made up of 23 members including HCPs, people with lived experience of Long Covid and other stakeholders.

Understanding ethnic inequalities in the design and implementation of digital health interventions for cardiometabolic disease: a qualitative study.

BACKGROUND: The use of digital health interventions (DHIs), such as apps and wearable devices, for prevention and management of cardiometabolic disease, has been accelerated by the impact of COVID-19 on health-care services. Digital inequalities disproportionately affect those most at risk of wider health inequalities (e.g., older age, minority ethnicity, and lower household income) and might intersect with populations with higher cardiometabolic disease risk such as South Asians in the UK. We wanted to understand how those involved in DHI implementation perceive and address these inequalities, to help develop recommendations to reduce the risk of DHI implementation exacerbating existing health inequalities. METHODS: For this qualitative study we used a purposive sampling strategy, whereby focus groups and semi-structured interviews were done online between April 7 and Dec 8, 2022, with stakeholders, including health-care professionals (n=15); technology developers and digital experts (n=10); those in strategy, evaluation, or policy roles (n=15); and charities (n=4). Discussions covered barriers and facilitators to inclusive design and implementation of DHIs, with focus dependent on expertise. Findings from a qualitative study with South Asian patients have been reported separately. Audio recordings were transcribed and coded using reflexive thematic analysis. Participants provided written consent and the study received NHS Health Research Authority approval from London - Brent Research Ethics Committee (IRAS 261047). FINDINGS: Participants had a good understanding of barriers to DHI use for cardiometabolic disease faced by South Asians, highlighting the need to design for language, culture, and diet. Many emphasised the link between digital exclusion and socioeconomic deprivation, across all ethnic groups in the UK. The potential for DHIs in improving patient outcomes was recognised; however, equity concerns included unequal patient access, lack of data and resources to target support, and need for quality evidence to recommend and commission digital tools. A range of solutions for improving equity were suggested such as resourcing support for digital upskilling, community engagement, and the role of regulation in embedding improved design and evaluation of DHIs available through health-care services. INTERPRETATION: This study reflects the experiences of professionals interested in (digital) health inequalities. However, challenges to equitable digital health implementation and use are well described. Our findings present multi-sectoral responsibilities and opportunities for action. FUNDING: National Institute for Health and Care Research (NIHR).

Integrated approach to cardiovascular disease in people experiencing homelessness: a qualitative study.

BACKGROUND: Homelessness is associated with an increased risk of cardiovascular disease (CVD), beyond impact of socioeconomic status. CVD is preventable and treatable, though barriers to interventions exist for people experiencing homelessness. Those with lived experience of homelessness and health professionals with relevant expertise can help to understand and address these barriers. OBJECTIVES: To understand, and make recommendations to improve, CVD care in homeless populations through lived and professional expertise. METHOD: Four focus groups were conducted in March-July 2019. Three groups included people currently or previously experiencing homelessness, each attended by a cardiologist (AB), a health services researcher (PB) and an 'expert by experience' (SB) who coordinated participants. One group included multidisciplinary health and social care professionals in and around London to explore solutions. PARTICIPANTS: The three groups included 16 men and 9 women, aged 20-60 years, of whom 24 were homeless and currently living in hostels, and 1 rough sleeper. At least 14 discussed sleeping rough at some point. RESULTS: Participants were aware of CVD risks and relevance of healthy habits but identified barriers to prevention and health access, starting with disorientation affecting planning and self-care, lack of facilities for food, hygiene and exercise, and experiences of discrimination. CONCLUSIONS: CVD care for those experiencing homelessness should account for fundamental problems of the environment, be codesigned with service users and cover key principles: flexibility, public and staff education, integration of support and advocacy for health service rights.

Digital health, cardiometabolic disease and ethnicity: an analysis of United Kingdom government policies from 2010 to 2022.

Recent health policies in the United Kingdom (UK) and internationally have focussed on digitisation of healthcare. We examined UK policies for evidence of government action addressing health inequalities and digital health, using cardiometabolic disease as an exemplar. Using a systematic search methodology, we identified 87 relevant policy documents published between 2010 and 2022. We found increasing emphasis on digital health, including for prevention, diagnosis and management of cardiometabolic disease. Several policies also focused on tackling health inequalities and improving digital access. The COVID-19 pandemic amplified inequalities. No policies addressed ethnic inequalities in digital health for cardiometabolic disease, despite high prevalence in minority ethnic communities. Our findings suggest that creating opportunities for digital inclusion and reduce longer-term health inequalities, will require future policies to focus on: the heterogeneity of ethnic groups; cross-sectoral disadvantages which contribute to disease burden and digital accessibility; and disease-specific interventions which lend themselves to culturally tailored solutions.

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.

Frameworks for Implementation, Uptake, and Use of Cardiometabolic Disease-Related Digital Health Interventions in Ethnic Minority Populations: Scoping Review.

BACKGROUND: Digital health interventions have become increasingly common across health care, both before and during the COVID-19 pandemic. Health inequalities, particularly with respect to ethnicity, may not be considered in frameworks that address the implementation of digital health interventions. We considered frameworks to include any models, theories, or taxonomies that describe or predict implementation, uptake, and use of digital health interventions. OBJECTIVE: We aimed to assess how health inequalities are addressed in frameworks relevant to the implementation, uptake, and use of digital health interventions; health and ethnic inequalities; and interventions for cardiometabolic disease. METHODS: SCOPUS, PubMed, EMBASE, Google Scholar, and gray literature were searched to identify papers on frameworks relevant to the implementation, uptake, and use of digital health interventions; ethnically or culturally diverse populations and health inequalities; and interventions for cardiometabolic disease. We assessed the extent to which frameworks address health inequalities, specifically ethnic inequalities; explored how they were addressed; and developed recommendations for good practice. RESULTS: Of 58 relevant papers, 22 (38%) included frameworks that referred to health inequalities. Inequalities were conceptualized as society-level, system-level, intervention-level, and individual. Only 5 frameworks considered all levels. Three frameworks considered how digital health interventions might interact with or exacerbate existing health inequalities, and 3 considered the process of health technology implementation, uptake, and use and suggested opportunities to improve equity in digital health. When ethnicity was considered, it was often within the broader concepts of social determinants of health. Only 3 frameworks explicitly addressed ethnicity: one focused on culturally tailoring digital health interventions, and 2 were applied to management of cardiometabolic disease. CONCLUSIONS: Existing frameworks evaluate implementation, uptake, and use of digital health interventions, but to consider factors related to ethnicity, it is necessary to look across frameworks. We have developed a visual guide of the key constructs across the 4 potential levels of action for digital health inequalities, which can be used to support future research and inform digital health policies.

STIMULATE-ICP-CAREINEQUAL (Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways) study protocol: Defining usual care and examining inequalities in Long Covid support.

INTRODUCTION: Individuals with Long Covid represent a new and growing patient population. In England, fewer than 90 Long Covid clinics deliver assessment and treatment informed by NICE guidelines. However, a paucity of clinical trials or longitudinal cohort studies means that the epidemiology, clinical trajectory, healthcare utilisation and effectiveness of current Long Covid care are poorly documented, and that neither evidence-based treatments nor rehabilitation strategies exist. In addition, and in part due to pre-pandemic health inequalities, access to referral and care varies, and patient experience of the Long Covid care pathways can be poor. In a mixed methods study, we therefore aim to: (1) describe the usual healthcare, outcomes and resource utilisation of individuals with Long Covid; (2) assess the extent of inequalities in access to Long Covid care, and specifically to understand Long Covid patients' experiences of stigma and discrimination. METHODS AND ANALYSIS: A mixed methods study will address our aims. Qualitative data collection from patients and health professionals will be achieved through surveys, interviews and focus group discussions, to understand their experience and document the function of clinics. A patient cohort study will provide an understanding of outcomes and costs of care. Accessible data will be further analysed to understand the nature of Long Covid, and the care received. ETHICS AND DISSEMINATION: Ethical approval was obtained from South Central-Berkshire Research Ethics Committee (reference 303958). The dissemination plan will be decided by the patient and public involvement and engagement (PPIE) group members and study Co-Is, but will target 1) policy makers, and those responsible for commissioning and delivering Long Covid services, 2) patients and the public, and 3) academics.

Learning our lesson: using past policies to improve digital and ethnic inequalities beyond the pandemic.

COVID-19 has had a disproportionate impact on ethnic minorities in the UK, raising questions about whether learning from the past few decades about the interplay between ethnicity and health inequalities has been effectively incorporated in current health policy. As digital health approaches, such as remote consultations and apps, become more widespread during and after the pandemic, it is important to ensure that these do not contribute to 'widening the gap'. We highlight three areas in which existing knowledge and evidence can be translated into cross-sectoral action to avoid further ethnic and digital health inequalities: data and measurement, improved communication, and embedded equality impact.