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.

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.

Interventions to improve perinatal outcomes among migrant women in high-income countries: a systematic review protocol.

INTRODUCTION: Women who are migrants and who are pregnant or postpartum are at high risk of poorer perinatal outcomes compared with host country populations due to experiencing numerous additional stressors including social exclusion and language barriers. High-income countries (HICs) host many migrants, including forced migrants who may face additional challenges in the peripartum period. Although HICs' maternity care systems are often well developed, they are not routinely tailored to the needs of migrant women. The primary objective will be to determine what interventions exist to improve perinatal outcomes for migrant women in HICs. The secondary objective will be to explore the effectiveness of these interventions by exploring the impact on perinatal outcomes. The main outcomes of interest will be rates of preterm birth, birth weight, and number of antenatal or postnatal appointments attended. METHODS AND ANALYSIS: This protocol follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Protocols guidelines. EMBASE, EMCARE, MEDLINE and PsycINFO, CENTRAL, Scopus, CINAHL Plus, and Web of Science, as well as grey literature sources will be searched from inception up to December 2022. We will include randomised controlled trials, quasi-experimental and interventional studies of interventions, which aim to improve perinatal outcomes in any HIC. There will be no language restrictions. We will exclude studies presenting only qualitative outcomes and those including mixed populations of migrant and non-migrant women. Screening and data extraction will be completed by two independent reviewers and risk of bias will be assessed using the Quality Assessment Tool for Quantitative Studies. If a collection of suitably comparable outcomes is retrieved, we will perform meta-analysis applying a random effects model. Presentation of results will comply with guidelines in the Cochrane Handbook of Systematic Reviews of Interventions and the PRISMA statement. ETHICS AND DISSEMINATION: Ethical approval is not required. Results will be submitted for peer-reviewed publication and presented at national and international conferences. The findings will inform the work of the Lancet Migration European Hub. PROSPERO REGISTRATION NUMBER: CRD42022380678.

Impact of fatigue as the primary determinant of functional limitations among patients with post-COVID-19 syndrome: a cross-sectional observational study.

OBJECTIVES: To describe self-reported characteristics and symptoms of treatment-seeking patients with post-COVID-19 syndrome (PCS). To assess the impact of symptoms on health-related quality of life (HRQoL) and patients' ability to work and undertake activities of daily living. DESIGN: Cross-sectional single-arm service evaluation of real-time user data. SETTING: 31 post-COVID-19 clinics in the UK. PARTICIPANTS: 3754 adults diagnosed with PCS in primary or secondary care deemed suitable for rehabilitation. INTERVENTION: Patients using the Living With Covid Recovery digital health intervention registered between 30 November 2020 and 23 March 2022. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was the baseline Work and Social Adjustment Scale (WSAS). WSAS measures the functional limitations of the patient; scores of ≥20 indicate moderately severe limitations. Other symptoms explored included fatigue (Functional Assessment of Chronic Illness Therapy-Fatigue), depression (Patient Health Questionnaire-Eight Item Depression Scale), anxiety (Generalised Anxiety Disorder Scale, Seven-Item), breathlessness (Medical Research Council Dyspnoea Scale and Dyspnoea-12), cognitive impairment (Perceived Deficits Questionnaire, Five-Item Version) and HRQoL (EQ-5D). Symptoms and demographic characteristics associated with more severe functional limitations were identified using logistic regression analysis. RESULTS: 3541 (94%) patients were of working age (18-65); mean age (SD) 48 (12) years; 1282 (71%) were female and 89% were white. 51% reported losing ≥1 days from work in the previous 4 weeks; 20% reported being unable to work at all. Mean WSAS score at baseline was 21 (SD 10) with 53% scoring ≥20. Factors associated with WSAS scores of ≥20 were high levels of fatigue, depression and cognitive impairment. Fatigue was found to be the main symptom contributing to a high WSAS score. CONCLUSION: A high proportion of this PCS treatment-seeking population was of working age with over half reporting moderately severe or worse functional limitation. There were substantial impacts on ability to work and activities of daily living in people with PCS. Clinical care and rehabilitation should address the management of fatigue as the dominant symptom explaining variation in functionality.

Development, deployment and evaluation of digitally enabled, remote, supported rehabilitation for people with long COVID-19 (Living With COVID-19 Recovery): protocol for a mixed-methods study.

INTRODUCTION: Long COVID-19 is a distressing, disabling and heterogeneous syndrome often causing severe functional impairment. Predominant symptoms include fatigue, cognitive impairment ('brain fog'), breathlessness and anxiety or depression. These symptoms are amenable to rehabilitation delivered by skilled healthcare professionals, but COVID-19 has put severe strain on healthcare systems. This study aims to explore whether digitally enabled, remotely supported rehabilitation for people with long COVID-19 can enable healthcare systems to provide high quality care to large numbers of patients within the available resources. Specific objectives are to (1) develop and refine a digital health intervention (DHI) that supports patient assessment, monitoring and remote rehabilitation; (2) develop implementation models that support sustainable deployment at scale; (3) evaluate the impact of the DHI on recovery trajectories and (4) identify and mitigate health inequalities due to the digital divide. METHODS AND ANALYSIS: Mixed-methods, theoretically informed, single-arm prospective study, combining methods drawn from engineering/computer science with those from biomedicine. There are four work packages (WP), one for each objective. WP1 focuses on identifying user requirements and iteratively developing the intervention to meet them; WP2 combines qualitative data from users with learning from implementation science and normalisation process theory, to promote adoption, scale-up, spread and sustainability of the intervention; WP3 uses quantitative demographic, clinical and resource use data collected by the DHI to determine illness trajectories and how these are affected by use of the DHI; while WP4 focuses on identifying and mitigating health inequalities and overarches the other three WPs. ETHICS AND DISSEMINATION: Ethical approval obtained from East Midlands - Derby Research Ethics Committee (reference 288199). Our dissemination strategy targets three audiences: (1) Policy makers, Health service managers and clinicians responsible for delivering long COVID-19 services; (2) patients and the public; (3) academics. TRIAL REGISTRATION NUMBER: Research Registry number: researchregistry6173.

Patients' use of the internet to negotiate about treatment.

The internet provides access to a huge variety of information, including health information. There is, however, a dearth of evidence as to how, and to what ends, patients raise prior use of the internet during medical visits. Analysis is based on the Harnessing Resources from the Internet study. Drawing on data from 281 video-recorded primary care consultations, we use conversation analysis (CA) to systematically inspect the data for instances in which patients reveal that they have accessed publicly available online resources regarding their illness, symptoms, or treatment concerns. Patients invoke the internet to support three types of action: to (i) justify concerns about a serious illness; (ii) provide a warrant for treatment where they have been unable to find a solution; and (iii) advocate in relation to treatment. Although invoking the internet risks potential encroachment into the doctor's domain of authority, patients carefully design their turns when raising the internet so as to orientate to the final decision about treatment as residing firmly within the doctor's domain of authority. The work demonstrates how detailed interactional analysis can be used to illuminate the local work that patients and doctors engage in to manage the rise in availability of information from the internet.

How do people who use drugs experience treatment? A qualitative analysis of views about opioid substitution treatment in primary care (iCARE study).

OBJECTIVE: To understand the most significant aspects of care experienced by people in opioid substitution treatment (OST) in primary care settings. DESIGN: Semistructured individual interviews were conducted, following the critical incidents technique. Interview transcripts were analysed following a thematic analysis approach. PARTICIPANTS: Adults aged 18 years or older, receiving OST in UK-based primary care services. RESULTS: Twenty-four people in OST were interviewed between January and March 2019. Participants reported several aspects which were significant for their treatment, when engaging with the primary care service. These were grouped into 10 major themes: (1) humanised care; (2) individual bond/connection with the professional; (3) professionals' experience and knowledge; (4) having holistic care; (5) familiarity; (6) professionals' commitment and availability to help; (7) anonymity; (8) location; (9) collaborative teamwork; and (10) flexibility and changes around the treatment plan. CONCLUSIONS: This study included first-hand accounts of people who use drugs about what supports them in their recovery journey. The key lessons learnt from our findings indicate that people who use drugs value receiving treatment in humanised and destigmatised environments. We also learnt that a good relationship with primary care professionals supports their recovery journey, and that treatment plans should be flexible, tailor-made and collaboratively designed with patients.

Combining patient talk about internet use during primary care consultations with retrospective accounts. A qualitative analysis of interactional and interview data.

Despite widespread acknowledgement of internet use for information about health, patients report not disclosing use of online health information in consultations. This paper compares patients' reported use of the internet with matched video recordings of consultations. The concepts of doctorability and epistemics are employed to consider similarities and differences between patients' reports in interviews and actions in the consultation. Data are drawn from the Harnessing Resources from the Internet study conducted in the UK. The data set consists of 281 video-recorded general practice consultations, with pre-consultation questionnaires completed by all patients, interviews with all 10 participating doctors and 28 selected patients. We focus on the 28 patient interviews and associated consultation recordings. A conversation analytic (CA) approach is used to systematically inspect both the interview and consultation data. In interviews patients presented use of the internet as associated with appropriate self-management and help-seeking. In consultations patients skilfully translated what they had found on the internet in order to provide grounds for the actions they sought. We conclude that patients translate and utilise what they have found on the internet to assert the doctorability of their presenting problems. Furthermore, patients design their talk in both interviews and consultations to accord with their understanding of the epistemic rights of both doctors and patients. Patients search the internet so they are informed about their medical problem, however they carefully manage disclosure of information to avoid disrupting the smooth running of medical interactions.

Health care professionals' views towards self-management and self-management education for people with type 2 diabetes.

OBJECTIVES: Significant problems with patients engaging with diabetes self-management education (DSME) exist. The role of healthcare professionals (HCPs) has been highlighted, with a lack of enthusiasm, inadequate information provision and poor promotion of available programmes all cited as affecting patients' decisions to attend. However, little is known about HCPs' views towards DSME. This study investigates the views of HCPs towards self-management generally and self-management in the context of DSME more specifically. DESIGN: A qualitative study using semi-structured interviews to investigate HCPs views of type 2 diabetes self-management and DSME. Data were analysed thematically and emergent themes were mapped on to the constructs of Normalisation Process Theory (NPT). SETTING: Two boroughs in London, UK. PARTICIPANTS: Sampling was purposive to recruit a diverse range of professional roles including GPs, practice nurses, diabetes specialist nurses, healthcare assistants (HCAs), receptionists and commissioners of care. RESULTS: Interviews were conducted with 22 participants. The NPT analysis demonstrated that while a self-management approach to diabetes care was viewed by HCPs as necessary and, in principle, valuable, the reality is much more complex. HCPs expressed ambivalence about pushing certain patients into self-managing, preferring to retain responsibility. There was a lack of awareness among HCPs about the content of DSME and benefits to patients. Commitment to and engagement with DSME was tempered by concerns about suitability for some patients. There was little evidence of communication between providers of group-based DSME and HCPs or of HCPs engaging in work to follow-up non-attenders. CONCLUSIONS: HCPs have concerns about the appropriateness of DSME for all patients and discussed challenges to engaging with and performing the tasks required to embed the approach within practice. DSME, as a means of supporting self-management, was considered important in theory, but there was little evidence of HCPs seeing their role as extending beyond providing referrals.

Over-the-counter medicines: professional expertise and consumer discourses.

Ideas of participation and partnership in health care consultations have attracted increasing attention in recent years; however the consequences in terms of the necessary shifts in existing relationships are often overlooked. We examine how pharmacists work to maintain their professional expertise against the rise of health-care consumerism. We draw on the following data from a UK study of consultations for over-the-counter (OTC) medicines in two pharmacies: (i) an outline of the pharmacy owners' views of their practice model, (ii) data from observations and tape recorded consultations (iii) interviews with customers and pharmacists and (iv) views expressed in two feedback sessions discussing vignettes developed from observational and interview-based fieldwork. There was no suggestion that attempts to engage customers in discussions about their treatment necessitated a diminution of the importance of pharmaceutical expertise. Indeed, both pharmacists and customers acknowledged the importance of the asymmetry of knowledge between pharmacists and customers. Pharmaceutical expertise was however not always perceived to be necessary and transactions in pharmacies may be treated like those in any other retail environment. Further research using a larger dataset to investigate problems in interactions resulting from tensions between pharmaceutical expertise and consumerism is indicated.

Protocol paper for the 'Harnessing resources from the internet to maximise outcomes from GP consultations (HaRI)' study: a mixed qualitative methods study.

INTRODUCTION: Many patients now turn to the internet as a resource for healthcare information and advice. However, patients' use of the internet to manage their health has been positioned as a potential source of strain on the doctor-patient relationship in primary care. The current evidence about what happens when internet-derived health information is introduced during consultations has relied on qualitative data derived from interview or questionnaire studies. The 'Harnessing resources from the internet to maximise outcomes from GP consultations (HaRI)' study combines questionnaire, interview and video-recorded consultation data to address this issue more fully. METHODS AND ANALYSIS: Three data collection methods are employed: preconsultation patient questionnaires, video-recorded consultations between general practitioners (GP) and patients, and semistructured interviews with GPs and patients. We seek to recruit 10 GPs practising in Southeast England. We aim to collect up to 30 patient questionnaires and video-recorded consultations per GP, yielding up to 300. Up to 30 patients (approximately three per participating GP) will be selected for interviews sampled for a wide range of sociodemographic characteristics, and a variety of ways the use of, or information from, the internet was present or absent during their consultation. We will interview all 10 participating GPs about their views of online health information, reflecting on their own usage of online information during consultations and their patients' references to online health information. Descriptive, conversation and thematic analysis will be used respectively for the patient questionnaires, video-recorded consultations and interviews. ETHICS AND DISSEMINATION: Ethical approval has been granted by the London-Camden & Kings Cross Research Ethics Committee. Alongside journal publications, dissemination activities include the creation of a toolkit to be shared with patients and doctors, to guide discussions of material from the internet in consultations.

Information from the Internet and the doctor-patient relationship: the patient perspective--a qualitative study.

BACKGROUND: Both doctors and patients may perceive the Internet as a potential challenge to existing therapeutic relationships. Here we examine patients' views of the effect of the Internet on their relationship with doctors. METHODS: We ran 8 disease specific focus groups of between 2 and 8 respondents comprising adult patients with diabetes mellitus, ischaemic heart disease or hepatitis C. RESULTS: Data are presented on (i) the perceived benefits and (ii) limitations of the Internet in the context of the doctor-patient relationship, (iii) views on sharing information with doctors, and (iv) the potential of the Internet for the future. Information from the Internet was particularly valued in relation to experiential knowledge. CONCLUSION: Despite evidence of increasing patient activism in seeking information and the potential to challenge the position of the doctor, the accounts here do not in any way suggest a desire to disrupt the existing balance of power, or roles, in the consultation. Patients appear to see the Internet as an additional resource to support existing and valued relationships with their doctors. Doctors therefore need not feel challenged or threatened when patients bring health information from the Internet to a consultation, rather they should see it as an attempt on the part of the patient to work with the doctor and respond positively.

Patient reactions to a web-based cardiovascular risk calculator in type 2 diabetes: a qualitative study in primary care.

BACKGROUND: Use of risk calculators for specific diseases is increasing, with an underlying assumption that they promote risk reduction as users become better informed and motivated to take preventive action. Empirical data to support this are, however, sparse and contradictory. AIM: To explore user reactions to a cardiovascular risk calculator for people with type 2 diabetes. Objectives were to identify cognitive and emotional reactions to the presentation of risk, with a view to understanding whether and how such a calculator could help motivate users to adopt healthier behaviours and/or improve adherence to medication. DESIGN AND SETTING: Qualitative study combining data from focus groups and individual user experience. Adults with type 2 diabetes were recruited through website advertisements and posters displayed at local GP practices and diabetes groups. METHOD: Participants used a risk calculator that provided individualised estimates of cardiovascular risk. Estimates were based on UK Prospective Diabetes Study (UKPDS) data, supplemented with data from trials and systematic reviews. Risk information was presented using natural frequencies, visual displays, and a range of formats. Data were recorded and transcribed, then analysed by a multidisciplinary group. RESULTS: Thirty-six participants contributed data. Users demonstrated a range of complex cognitive and emotional responses, which might explain the lack of change in health behaviours demonstrated in the literature. CONCLUSION: Cardiovascular risk calculators for people with diabetes may best be used in conjunction with health professionals who can guide the user through the calculator and help them use the resulting risk information as a source of motivation and encouragement.

Self-treatment and its discussion in medical consultations: how is medical pluralism managed in practice?

Recent policy changes in the UK such as deregulation of prescribed medicines and the introduction of telephone helpline services are intended to promote self-treatment. Drawing on interviews with, and consultations between, 35 patients and 20 general practitioners, we use Kleinman's (Patients and Healers in the context of culture: an exploration of the Borderland between Anthropology, Medicine and Psychiatry, University of California Press Ltd., London) model of the three sectors of health care in order to examine the range of self-treatments people use and the discussion of these treatments in medical consultations. We argue that despite the availability of a range of treatment options and policy changes advocating greater use of self-treatment, patients are inhibited from disclosing prior self-treatment, and disclosure is affected by patients' perceptions of the legitimacy of self-treatment. The findings are in keeping with Cant and Sharma's (A New Medical Pluralism, Alternative Medicines, Doctors, Patients and the State, UCL Press, London) contention that although there has been a pluralisation of "legitimate" providers of health care and a restructuring of expertise, biomedicine itself remains dominant.

General practitioners' views on shared decision making: a qualitative analysis.

Despite rhetoric about increasing partnership in the consultation, shared decision making (SDM) is not necessarily happening in practice. As patient involvement in decision making cannot be achieved without general practitioners' (GPs) co-operation, attention to their concerns is essential. Previous research has used simulated patients to explore this area. Here, data from consultations and interviews with patients and GPs were used in focus group discussions enabling GPs to ground their views of the practical application of SDM in their own and other participants' real life practice. The following ideas were discussed; what constitutes SDM in practice, negotiation about treatment, perceptions of patients' viewpoints and perceived barriers to SDM. Agreement with SDM in theory may not translate into practice. The process outlined is being developed in order to establish whether the techniques could provide a supportive environment in which GPs can make changes to their practice to increase patient participation.

'It's the best of two evils': a study of patients' perceived information needs about oral steroids for asthma.

OBJECTIVES: To explore the sources of patients' knowledge about the potential side-effects of oral steroids prescribed to treat asthma. METHODS: Seventeen in-depth interviews were conducted with patients taking prescribed oral steroid medication (prednisolone) for asthma. The interviews were transcribed verbatim and the data organized according to common themes. RESULTS: All the respondents acknowledged they had no choice but to take oral steroids but they wanted to be informed about the potential side-effects. Respondents reported that they had not received sufficient information about side-effects from their general practitioner (GP). Information was sought from both medical sources (pharmacists and asthma nurses) and non-medical sources (friends and family, self-help groups and the media) to supplement their knowledge. The conclusions drawn about the risks of taking oral steroids were also influenced by respondents' existing beliefs. CONCLUSIONS: Respondents drew upon information about oral steroids from a variety of professional and lay sources. The findings add weight to calls for doctors and patients to share their respective knowledge in consultations. Developing an understanding of the views of GPs about the provision of information about side-effects would help to identify any perceived barriers to a more open exchange of information in the consultation.

A systematic review of the research on communication between patients and health care professionals about medicines: the consequences for concordance.

OBJECTIVES: We draw on a systematic review of research on two-way communication between patients and health practitioners about medicines in order to determine the extent to which concordance is, or is not, being put into practice. DATA SOURCES: Six electronic databases were searched using the following categories of search terms: health care professionals, patients/consumers, medicine-taking/prescribing and communication. Articles were also identified from handsearches of journals, article reference lists and the Concordance website. REVIEW METHODS: Studies published between 1991 and 2000 were included. Studies were not excluded on the basis of design, methods or language employed. Abstracts of identified articles were assessed by at least two reviewers and the full articles were assessed by one reviewer and checked by at least one other reviewer. Data on the design, analysis and relevant findings were extracted. RESULTS: A total of 11 801 abstracts were reviewed and 470 full articles were retrieved. Of the 134 articles subsequently included, 116 were descriptive studies. All but 10 of the papers were written in English. There were mixed findings about the extent to which patients feel that their beliefs, experience and preferences about medicines can be shared. Doctors tend to dominate discussions in consultations, although patient participation is associated with positive outcomes. Health care professionals' behaviour can impede as well as enhance patient involvement. CONCLUSIONS: There is little research that examines fundamental issues for concordance such as whether an exchange of views takes place. It is possible that interventions are needed to facilitate the development of concordance in practice.