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1.
Health Expect ; 27(1): e13982, 2024 Feb.
Article in English | MEDLINE | ID: mdl-39102699

ABSTRACT

INTRODUCTION: Remote (digital and/or telephone) access and consultation models are being driven by national policy with the goal being that the National Health Service operate on a remote-first (digital-first) basis by 2029. Previous research has suggested that remote methods of access to care and consulting may act to widen health inequalities for certain patients and/or groups such as those from ethnic minorities. South Asian (SA) patients comprise the largest ethnic minority group in England. Understanding the experiences and needs of this group is critical to ensuring that general practice can deliver equitable, quality health care. METHODS: Qualitative study. 37 participants (from Indian, Pakistani and/or Bangladeshi background) were recruited to take part in either in-person preferred language focus groups or remote semistructured interviews in the English language. Thematic analysis was conducted to identify themes in the qualitative data. FINDINGS: Three major interlinked themes were identified: (1) reduced access, (2) reduced patient choice and (3) quality and safety concerns. The findings highlight access issues split by (i) general issues with appointment access via any remote means and (ii) specific issues related to language barriers creating additional barriers to access and care. Some patients valued the convenience of remote access but also raised concerns regarding appointment availability and reduced patient choice. Face-to-face consultations were preferable but less available. The findings underscore how participants perceived remote care to be of lesser quality and less safe. Concerns were greatest for those with limited English proficiency (LEP), with the removal of non-verbal aspects of communication and 'hands-on' care leading to perceptions of reduced psycho-social safety. CONCLUSION: SA patients' experiences of remote-led primary care access and care delivery were negative with only a minority viewing it positively and for certain limited scenarios. Face-to-face models of care remain the preferred mode of consultation, particularly for those with LEP. Hybrid models of access offer patients the greatest choice, and are likely to meet the varying needs of the South-Asian patient population going forwards. The remote first approach to primary care may be achievable as a service ideal, but its limitations need to be recognised and accounted for to ensure that primary care can be an equitable service, both now and in the future. PUBLIC CONTRIBUTION: Members of the public were involved in all phases of research in the study. This included co-working in partnership throughout the study including, reviewing patient-facing documents, recruiting participants, data facilitation, translation work, interpretation of the data and co-authors on this manuscript. The key to the success of our study was collaborative teamwork, which involved experienced members of the public with SA cultural knowledge working together with and integral to the research team for all components.


Subject(s)
COVID-19 , Health Services Accessibility , Patient Preference , Primary Health Care , Qualitative Research , Humans , England , COVID-19/ethnology , Female , Male , Adult , Middle Aged , Focus Groups , Asian People , Communication Barriers , Aged , SARS-CoV-2 , Pakistan/ethnology , Bangladesh/ethnology , Interviews as Topic
2.
BJGP Open ; 2024 Jul 29.
Article in English | MEDLINE | ID: mdl-39074881

ABSTRACT

BACKGROUND: Since COVID-19 there been an increase in the use of remote consultations in General Practice in the UK. This leads to the displacement of the consultation outside of the physical GP practice, and its 'emplacement' elsewhere, with underexplored consequences for inequities of healthcare in marginalised groups. AIM: This paper examines the place-making demands that remote consultations make on patients, and the ways that these affect their experiences of care, with a focus on the impact on patients from marginalised groups. DESIGN & SETTING: Ethnography and interview study (n=15) undertaken at three sites in London: a foodbank, a community development organisation, and a drop-in advice centre for migrants. Additionally, GPs (n=5) working at practices in London Digital Health Hub staff (n=4) and staff at fieldwork sites (n=3) were interviewed. METHOD: Ethnographic observation (n=84 hours) and semi-structured interviews (n=27). Interviews were conducted in-person and over the phone and data were analysed through reflexive thematic analysis. RESULTS: The core themes emerging from the data included challenges securing privacy during remote consultations, and the loss of formal healthcare spaces as important places of care. These findings were closely tied to resource access, leading to inequities in experiences of care. CONCLUSION: Remote GP consultations are not "place-less" encounters, and inequities in access to suitable spaces may lead to inequities in experiences of care. Attention should be given to ensuring that patients without appropriate spaces for remote consultations are offered in-person care, or consultation times made more specific to allow for organisation of private space.

3.
Mult Scler J Exp Transl Clin ; 10(2): 20552173241262181, 2024.
Article in English | MEDLINE | ID: mdl-38873031

ABSTRACT

Background: Decision-making about treatment when planning a pregnancy (family planning) is complex for women living with multiple sclerosis (MS). Decision tools can help this process, in 2016 MS Trust launched their online digital treatment decision tool to support people with MS. Objectives: To evaluate user-experience of this tool by exploring women's opinions about its content, interface, and usefulness in the context of family planning; and to synthesize recommendations to improve the tool. Methods: Thirty participants qualitatively evaluated the tool using Think Aloud methodology. Sessions were conducted online using Microsoft Teams and were video recorded. Transcription was automated and data were thematically analyzed. Results: Women's first impression was that the tool presented a lot of information at once, which was difficult to take in, and they found it difficult to navigate. Although the tool was helpful in allowing them to compare treatment options, the filters were confusing, and the information related to pregnancy sometimes contradicted advice from their healthcare practitioners. They suggested rewording the pregnancy recommendations and filters, updating some content, and making some changes to the interface to meet users' cognitive needs. Conclusion: The MS Trust treatment decision tool is excellent in helping women with treatment choices at initial diagnosis. However, it is not currently as useful when considering family plans. Recommendations were conveyed to MS Trust where some are now applied to the new live version and the rest are to be considered for future updating projects.

4.
Health Expect ; 27(3): e14070, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38751247

ABSTRACT

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.


Subject(s)
Diabetes Mellitus , Qualitative Research , Self-Management , Humans , Diabetes Mellitus/therapy , Socioeconomic Factors , Poverty , Self Care
5.
Health Expect ; 27(2): e14046, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38623837

ABSTRACT

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.


Subject(s)
Self-Management , Adult , Humans , Qualitative Research , United Kingdom , Medically Underserved Area , Socioeconomic Factors
6.
J Health Psychol ; 29(7): 659-664, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38485917

ABSTRACT

'Open Science' advocates for open access to scientific research, as well as sharing data, analysis plans and code in order to enable replication of results. However, these requirements typically fail to account for methodological differences between quantitative and qualitative research, and serious ethical problems are raised by the suggestion that full qualitative datasets can or should be published alongside qualitative research papers. Aside from important ethical concerns, the idea of sharing qualitative data in order to enable replication is conceptually at odds with the underpinnings on most qualitative methodologies, which highlight the importance of the unique interpretative function of the researcher. The question of whether secondary analysis of qualitative data is acceptable is key, and in this commentary we argue that there are good conceptual, ethical and economic reasons to consider how funders, researchers and publishers can make better use of existing data.


Subject(s)
Information Dissemination , Qualitative Research , Humans , Research Personnel/psychology
7.
BJGP Open ; 2024 Mar 19.
Article in English | MEDLINE | ID: mdl-37940141

ABSTRACT

BACKGROUND: Emotional concerns (defined as any expression of low mood, anxiety, or psychosocial stress) are an important part of the biopsychosocial care model used in modern medical practice. Previous work has demonstrated variable engagement with emotional concerns and that improved communication has been associated with reductions in emotional distress. AIM: To examine how emotional concerns are engaged with during routine GP consultations. DESIGN & SETTING: Secondary study using the Harnessing Resources from the Internet (HaRI) database. The available dataset contains 231 recordings from 10 GPs across eight urban and suburban practices recorded in 2017 and 2018. METHOD: The dataset was reviewed to identify any consultations containing emotional concerns (as defined as any expression of low mood, anxiety, or psychosocial stress) before being imported into NVivo (version 12) to facilitate thematic analysis and coding. Reflexive inductive thematic analysis resulted in two major themes. RESULTS: The two main themes were as follows: engagement with emotional concerns as dynamic throughout consultations; and GPs engage with emotional concerns both diagnostically and therapeutically. In theme 1, this dynamism relates to competing areas of focus, immediate versus delayed engagement and reiteration of concerns throughout consultations. Emotional concerns can be engaged with in a similar way to physical concerns (theme 2) using a diagnostic and treatment-based approach; however, in addition to this, therapeutic listening and conversation is utilised. CONCLUSION: Awareness of the dynamic nature of emotional concerns within consultations and encouraging engagement with concerns in a flexible and patient-oriented manner may help improve doctor-patient communication. In addition, investigating how GPs and patients build shared understanding around emotional concerns may identify methods to reduce patients' emotional distress.

8.
Lancet ; 402 Suppl 1: S10, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37997049

ABSTRACT

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).


Subject(s)
Ill-Housed Persons , Substance-Related Disorders , Humans , Male , Female , Cross-Sectional Studies , Retrospective Studies , Substance-Related Disorders/epidemiology , England/epidemiology , Hospitals
9.
Lancet ; 402 Suppl 1: S53, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37997096

ABSTRACT

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).


Subject(s)
Delivery of Health Care , State Medicine , Male , Humans , Female , England , Health Services , Primary Health Care
10.
Lancet ; 402 Suppl 1: S87, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37997133

ABSTRACT

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).


Subject(s)
Maternal Health Services , Transients and Migrants , Humans , Female , Pregnancy , Public Health , Parturition , United Kingdom
11.
Eur J Gen Pract ; 29(1): 2232111, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37578421

ABSTRACT

BACKGROUND: In the first of a four-part series, we describe the fundamentals of public engagement in primary care research. OBJECTIVES: The article's purpose is to encourage, inform and improve the researcher's awareness about public engagement in research. For a growing number of researchers, funders and patient organisations in Europe, public engagement is a moral and ethical imperative for conducting high-quality research. DISCUSSION: Starting with an explanation of the role of public engagement in research, we highlight its diversity and benefits to research, researchers and the public members involved. We summarise principles of good practice and provide valuable resources for researchers to use in their public engagement activities. Finally, we discuss some of the issues encountered when researchers collaborate with members of the public and provide practical steps to address them. Case studies of real-life situations are used to illustrate and aid understanding. CONCLUSION: We hope this article and the other papers in this series will encourage researchers to better consider the role and practice of public engagement and the potential added value to research that collaborating with the public could provide.


Subject(s)
Patient Participation , Research Personnel , Humans , Europe
12.
BMJ Open ; 13(8): e072090, 2023 08 17.
Article in English | MEDLINE | ID: mdl-37591637

ABSTRACT

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.


Subject(s)
Maternal Health Services , Premature Birth , Transients and Migrants , Infant, Newborn , Pregnancy , Female , Humans , Developed Countries , Postpartum Period , Meta-Analysis as Topic , Systematic Reviews as Topic
13.
J Public Health (Oxf) ; 45(4): 970-1041, 2023 Nov 29.
Article in English | MEDLINE | ID: mdl-37553102

ABSTRACT

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.


Subject(s)
Self-Management , Humans , Developed Countries , Poverty , Income
14.
BMJ Open ; 13(6): e069217, 2023 06 07.
Article in English | MEDLINE | ID: mdl-37286327

ABSTRACT

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.


Subject(s)
COVID-19 , Quality of Life , Adult , Female , Humans , Male , Middle Aged , Activities of Daily Living , COVID-19/complications , Cross-Sectional Studies , Fatigue/etiology , Post-Acute COVID-19 Syndrome , Adolescent , Young Adult , Aged
16.
J Public Health Policy ; 44(2): 179-195, 2023 Jun.
Article in English | MEDLINE | ID: mdl-37085565

ABSTRACT

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.


Subject(s)
COVID-19 , Cardiovascular Diseases , Humans , Ethnicity , Pandemics , COVID-19/epidemiology , Health Policy , United Kingdom , Government , Cardiovascular Diseases/epidemiology , Cardiovascular Diseases/prevention & control
17.
PLoS One ; 18(2): e0282036, 2023.
Article in English | MEDLINE | ID: mdl-36809286

ABSTRACT

BACKGROUND: Multiple long-term conditions are rising across all groups but people experiencing socioeconomic deprivation are found to have a higher prevalence. Self-management strategies are a vital part of healthcare for people with long-term conditions and effective strategies are associated with improved health outcomes in a variety of health conditions. The management of multiple long-term conditions are, however, less effective in people experiencing socioeconomic deprivation, leaving them more at risk of health inequalities. The purpose of this review is to identify and synthesise qualitative evidence on the barriers and facilitators of self-management on long-term conditions in those experiencing socioeconomic deprivation. METHODS: MEDLINE, EMBASE, AMED, PsycINFO and CINAHL Plus were searched for qualitative studies concerning self-management of multiple long-term conditions among socioeconomically disadvantaged populations. Data were coded and thematically synthesised using NVivo. FINDINGS: From the search results, 79 relevant qualitative studies were identified after the full text screening and 11 studies were included in the final thematic synthesis. Three overarching analytical themes were identified alongside a set of sub-themes: (1) Challenges of having multiple long-term conditions; prioritisation of conditions, impact of multiple long-term conditions on mental health and wellbeing, polypharmacy, (2) Socioeconomic barriers to self-management; financial, health literacy, compounding impact of multiple long-term conditions and socioeconomic deprivation, (3) Facilitators of self-management in people experiencing socioeconomic deprivation; maintaining independence, 'meaningful' activities, support networks. DISCUSSION: Self-management of multiple long-term conditions is challenging for people experiencing socioeconomic deprivation due to barriers around financial constraints and health literacy, which can lead to poor mental health and wellbeing. To support targeted interventions, greater awareness is needed among health professionals of the barriers/challenges of self-management among these populations.


Subject(s)
Self-Management , Humans , Mental Health , Health Personnel/psychology , Qualitative Research , Socioeconomic Factors
18.
JMIR Aging ; 6: e31812, 2023 Feb 03.
Article in English | MEDLINE | ID: mdl-36735321

ABSTRACT

BACKGROUND: Older people are the highest users of health services but are less likely to use a patient portal than younger people. OBJECTIVE: This scoping review aimed to identify and synthesize the literature on contextual factors that impact the implementation of patient portals in acute care hospitals and among older people. METHODS: A scoping review was conducted according to the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guidelines. The following databases were searched from 2010 to June 2020: MEDLINE and Embase via the Ovid platform, CINAHL and PsycINFO via the EBSCO platform, and the Cochrane Library. Eligible reviews were published in English; focused on the implementation of tethered patient portals; included patients, health care professionals, managers, and budget holders; and aimed at identifying the contextual factors (ie, barriers and facilitators) that impact the implementation of patient portals. Review titles and abstracts and full-text publications were screened in duplicate. The study characteristics were charted by one author and checked for accuracy by a second author. The NASSS (Non-adoption, Abandonment, Scale-up, Spread, and Sustainability) framework was used to synthesize the findings. RESULTS: In total, 10 systematic reviews published between 2015 and 2020 were included in the study. Of these, 3 (30%) reviews addressed patient portals in acute care hospitals, and 2 (20%) reviews addressed the implementation of patient portals among older people in multiple settings (including acute care hospitals). To maximize the inclusion of the literature on patient portal implementation, we also included 5 reviews of systematic reviews that examined patient portals in multiple care settings (including acute care hospitals). Contextual factors influencing patient portal implementation tended to cluster in specific NASSS domains, namely the condition, technology, and value proposition. Certain aspects within these domains received more coverage than others, such as sociocultural factors and comorbidities, the usability and functionality aspects of the technology, and the demand-side value. There are gaps in the literature pertinent to the consideration of the provision of patient portals for older people in acute care hospitals, including the lack of consideration of the diversity of older adults and their needs, the question of interoperability between systems (likely to be important where care involves multiple services), the involvement of lay caregivers, and looking beyond short-term implementation to ways in which portal use can be sustained. CONCLUSIONS: We identified important contextual factors that impact patient portal implementation and key gaps in the literature. Future research should focus on evaluating strategies that address disparities in use and promote engagement with patient portals among older people in acute care settings.

19.
J Med Internet Res ; 25: e40630, 2023 01 06.
Article in English | MEDLINE | ID: mdl-36607732

ABSTRACT

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.


Subject(s)
Cardiovascular Diseases , Diabetes Mellitus, Type 2 , Humans , Ethnicity , Cardiovascular Diseases/prevention & control , Diabetes Mellitus, Type 2/therapy , Asian People , Minority Groups
20.
Br J Gen Pract ; 73(726): e67-e74, 2023 01.
Article in English | MEDLINE | ID: mdl-36316163

ABSTRACT

BACKGROUND: Health systems are seeking to harness digital tools to promote patient autonomy and increase the efficiency of care worldwide. The NHS Long Term Plan created the right for patients to access 'digital first' primary care by 2023-2024, including online patient access to full medical records. AIM: To identify and understand the unintended consequences of online patient access to medical records. DESIGN AND SETTING: Qualitative interview study in 10 general practices in South West and North West England. METHOD: Semi-structured individual interviews with 13 patients and 16 general practice staff with experience of patient online access to health records. RESULTS: Online access generated unintended consequences that negatively impacted patients' understanding of their health care, with patients finding surprising or difficult to interpret information. Online access impacted GPs' documentation practices, such as when GPs pre-emptively attempted to minimise potential misunderstandings to aid patient understanding of their health care. In other cases, this negatively impacted the quality of the records and patient safety when GPs avoided documenting speculations or concerns. Contrary to assumptions that workload would be reduced, online access introduced extra work, such as managing and monitoring access, and taking measures to prevent possible harm to patients. CONCLUSION: The unintended consequences described by both staff and patients show that, to achieve the intended consequences set out in NHS policy, additional work is necessary to prepare records for sharing and to prepare patients about what to expect. It is crucial that practices are adequately supported and resourced to manage the unintended consequences of online access, now that it is the default position. A table of potential unintended consequences and mitigation measures is provided to aid practice managers and clinicians implementing online access.


Subject(s)
General Practice , General Practitioners , Humans , England , Qualitative Research , Primary Health Care
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