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INTRODUCTION: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce 'Top 10' lists of health and care research priorities through a structured, shared decision-making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste. AIM: The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care. METHODS: Our analysis included 'Top 10' research priorities produced by UK-based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes. RESULTS: Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being 'generic health relevance' (22%), 'mental health' (18%) and 'musculoskeletal' (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top-level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts. CONCLUSION: There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online. PATIENT OR PUBLIC CONTRIBUTION: Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings.
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Prioridades en Salud , Humanos , Reino Unido , Investigación sobre Servicios de Salud , Toma de Decisiones Conjunta , InvestigaciónRESUMEN
Video technology enabled professionals and patients to conduct consultations during the COVID-19 pandemic when in-person health care was minimised to reduce the spread of the virus. We present findings of a study of video-consulting through in-depth qualitative remote interviews with 40 health professionals, managers, support staff and 10 patients in health-care services across the UK from 2020 to 2021. Drawing on Foucault's concept of the clinical gaze, Merleau-Ponty's work on the phenomenology of perception and Ihde's postphenomenology we interpreted the ways in which remote consultations shaped patient-professional interactions, mediating and framing what was seen, revealed and known. We found that participating in video consultations not only involved creative adaption and adjustment to a virtual clinic but also changed how professionals and patients saw and were seen. We argue that this mode of consulting can transform boundaries and perceptions, alter aspects of clinical presence, knowledge and embodiment and thus both change and incorporate the clinical gaze.
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Pandemias , Telemedicina , Humanos , Derivación y Consulta , Atención a la Salud , PercepciónRESUMEN
BACKGROUND: Cluain Mhuire is a secondary adult mental health service based in Ireland. The COVID-19 pandemic resulted in many services moving online, including our coping with depression group. A shortened, online version of the face-to-face group was piloted; however, analysis showed that it was not as effective as the longer face-to-face group. Thus, a 12-session, 2.5-hour online group CBT (gCBT) was subsequently run to directly compare the online therapy with the original face-to-face group. AIMS: The primary objective of the study is to evaluate the effectiveness of a 12-week gCBT programme adapted to videoconferencing in reducing self-reported symptoms of depression and anxiety and enhancing quality of life (QoL). Results will be compared with the same group programme delivered face-to-face. METHOD: This is a between-groups, naturalistic treatment outcome study. Pre and post measures include the Beck Depression Inventory-II (BDI-II), Beck Anxiety Inventory (BAI), and the World Health Organisation Quality of Life Scale (WHOQoL-Bref). A mixed between-within subjects analysis of variance was performed to assess the impact of the three interventions (face-to-face, 8-session online and 12-session online) on participant scores; 112 participants (65 women, 47 men) were recruited (mean age=41.85, SD=13.08). RESULTS: All three interventions significantly improved depression, anxiety and QoL scores. There was no significant difference between the treatment groups. Attendance was highest in the 12-session online group, followed by the 8-session online group and 12-session in-person group. CONCLUSIONS: These results add to the growing evidence supporting the effectiveness of internet-delivered gCBT in reducing depressive symptoms.
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COVID-19 , Servicios de Salud Mental , Adulto , Masculino , Humanos , Femenino , Depresión/terapia , Proyectos Piloto , Calidad de Vida , Irlanda , Pacientes Ambulatorios , Pandemias , Comunicación por VideoconferenciaRESUMEN
Autosomal Dominant Polycystic Kidney Disease (ADPKD) is thought to affect about 1 in 1000 people in the UK. ADPKD causes a progressive decline in kidney function, with kidney failure tending to occur in middle age. Children and young people with ADPKD may not have any symptoms. However they may have high blood pressure, which may accelerate progression to later stages of chronic kidney disease.There is uncertainty and variation in how health professionals manage children and young people with confirmed or a family history of ADPKD, because of a lack of evidence. For example, health professionals may be unsure about when to test children's blood pressure and how often to monitor it in the hospital clinic or at the GP. They may have different approaches in recommending scanning or genetic testing for ADPKD in childhood, with some recommending waiting until the young person is mature enough to make this decision his or herself.This guideline is intended to help families affected by ADPKD by making sure that: health professionals with specialist knowledge in ADPKD offer you information on inheritance and potential benefits and harms of testing for ADPKD. the decision to test and the method of testing for ADPKD in children and young people is shared between you or your family and the health professionals blood pressure assessment is undertaken regularly in children and young people at risk of developing ADPKD.
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Monitoreo Ambulatorio de la Presión Arterial , Pruebas Genéticas/métodos , Hipertensión , Anamnesis/métodos , Riñón Poliquístico Autosómico Dominante , Insuficiencia Renal , Adolescente , Enfermedades Asintomáticas , Monitoreo Ambulatorio de la Presión Arterial/métodos , Monitoreo Ambulatorio de la Presión Arterial/normas , Niño , Humanos , Hipertensión/diagnóstico , Hipertensión/etiología , Monitoreo Fisiológico/métodos , Riñón Poliquístico Autosómico Dominante/complicaciones , Riñón Poliquístico Autosómico Dominante/diagnóstico , Insuficiencia Renal/etiología , Insuficiencia Renal/prevención & control , Medición de Riesgo/métodos , Reino UnidoRESUMEN
BACKGROUND: Invasive vagus nerve stimulation (VNS) has the potential to enhance the effects of physiotherapy for upper limb motor recovery after stroke. Noninvasive, transcutaneous auricular branch VNS (taVNS) may have similar benefits, but this has not been evaluated in stroke recovery. We sought to determine the feasibility of taVNS delivered alongside upper limb repetitive task-specific practice after stroke and its effects on a range of outcome measures evaluating limb function. MATERIALS AND METHODS: Thirteen participants at more than 3 months postischemic stroke with residual upper limb dysfunction were recruited from the community of Sheffield, United Kingdom (October-December 2016). Participants underwent 18 × 1-hour sessions over 6 weeks in which they made 30-50 repetitions of 8-10 arm movements concurrently with taVNS (NEMOS; Cerbomed, Erlangen, Germany, 25 Hz, .1-millisecond pulse width) at maximum tolerated intensity (mA). An electrocardiogram and rehabilitation outcome scores were obtained at each visit. Qualitative interviews determined the acceptability of taVNS to participants. RESULTS: Median time after stroke was 1.16 years, and baseline median/interquartile range upper limb Fugl-Meyer (UFM) score was 63 (54.5-99.5). Participants attended 92% of the planned treatment sessions. Three participants reported side effects, mainly fatigue, but all performed mean of more than 300 arm repetitions per session with no serious adverse events. There was a significant change in the UFM score with a mean increase per participant of 17.1 points (standard deviation 7.8). CONCLUSION: taVNS is feasible and well-tolerated alongside upper limb repetitive movements in poststroke rehabilitation. The motor improvements observed justify a phase 2 trial in patients with residual arm weakness.
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Rehabilitación de Accidente Cerebrovascular , Extremidad Superior , Estimulación del Nervio Vago , Anciano , Terapia Combinada , Oído , Estudios de Factibilidad , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Paresia/etiología , Paresia/fisiopatología , Paresia/terapia , Satisfacción del Paciente , Proyectos Piloto , Investigación Cualitativa , Recuperación de la Función , Accidente Cerebrovascular/complicaciones , Accidente Cerebrovascular/fisiopatología , Accidente Cerebrovascular/terapia , Rehabilitación de Accidente Cerebrovascular/efectos adversos , Resultado del Tratamiento , Extremidad Superior/fisiopatología , Estimulación del Nervio Vago/efectos adversos , Estimulación del Nervio Vago/métodosRESUMEN
BACKGROUND: Person-centred care (PCC) is increasingly advocated as a new way of delivering health care, but there is little evidence that it is widely practised. The University of Gothenburg Centre for Person-Centred Care (GPCC) was set up in 2010 to develop and implement person-centred care in clinical practice on the basis of three routines. These routines are based on eliciting the patient's narrative to initiate a partnership; working the partnership to achieve commonly agreed goals; and using documentation to safeguard the partnership and record the person's narrative and shared goals. OBJECTIVE: In this paper, we aimed to explore professionals' understanding of PCC routines as they implement the GPCC model in a range of different settings. METHODS: We conducted a qualitative study and interviewed 18 clinician-researchers from five health-care professions who were working in seven diverse GPCC projects. RESULTS: Interviewees' accounts of PCC emphasized the ways in which persons are seen as different from patients; the variable emphasis placed on the person's goals; and the role of the person's own resources in building partnerships. CONCLUSION: This study illustrates what is needed for health-care professionals to implement PCC in everyday practice: the recognition of the person is as important as the specific practical routines. Interviewees described the need to change the clinical mindset and to develop the ways of integrating people's narratives with clinical practice.
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Actitud del Personal de Salud , Narración , Atención Dirigida al Paciente/métodos , Personeidad , Humanos , Investigación CualitativaRESUMEN
BACKGROUND: The introduction of innovative models of healthcare does not necessarily mean that they become embedded in everyday clinical practice. This study has two aims: first, to analyse deliberate and emergent strategies adopted by healthcare professionals to overcome barriers to normalization of a specific framework of person-centred care (PCC); and secondly, to explore how the recipients of PCC understand these strategies. METHODS: This paper is based on a qualitative study of the implementation of PCC in a Swedish context. It draws on semi-structured interviews with 18 researchers and 17 practitioners who adopted a model of PCC on four different wards and 20 patients who were cared for in one of these wards. Data from these interviews were first coded inductively and emerging themes are analysed in relation to normalization process theory (NPT). RESULTS: In addition to deliberate strategies, we identify emergent strategies to normalize PCC by (i) creating and sustaining coherence in small but continuously communicating groups (ii) interpreting PCC flexibly when it meets specific local situations and (iii) enforcing teamwork between professional groups. These strategies resulted in patients perceiving PCC as bringing about (i) a sense of ease (ii) appreciation of inter-professional congruity (ii) non-hierarchical communication. CONCLUSION: NPT is useful to identify and analyse deliberate and emergent strategies relating to mechanisms of normalization. Emergent strategies should be interpreted not as trivial solutions to problems in implementation, but as a possible repertoire of tools, practices and skills developed in situ. As professionals and patients may have different understandings of implementation, it is also crucial to include patients' perceptions to evaluate outcomes.
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Atención Dirigida al Paciente/organización & administración , Investigadores , Actitud del Personal de Salud , Humanos , Relaciones Interprofesionales , Investigación Cualitativa , SueciaRESUMEN
BACKGROUND: To empower patients and improve the quality of care, policy-makers increasingly adopt systems to enhance person-centred care. Although models of person-centredness and patient-centredness vary, respecting the needs and preferences of individuals receiving care is paramount. In Sweden, as in other countries, healthcare providers seek to improve person-centred principles and address gaps in practice. Consequently, researchers at the University of Gothenburg Centre for Person-Centred Care are currently delivering person-centred interventions employing a framework that incorporates three routines. These include eliciting the patient's narrative, agreeing a partnership with shared goals between patient and professional, and safeguarding this through documentation. AIM: To explore the barriers and facilitators to the delivery of person-centred care interventions, in different contexts. METHOD: Qualitative interviews were conducted with a purposeful sample of 18 researchers from seven research studies across contrasting healthcare settings. Interviews were transcribed, translated and thematically analysed, adopting some basic features of grounded theory. ETHICAL ISSUES: The ethical code of conduct was followed and conformed to the ethical guidelines adopted by the Swedish Research Council. RESULTS: Barriers to the implementation of person-centred care covered three themes: traditional practices and structures; sceptical, stereotypical attitudes from professionals; and factors related to the development of person-centred interventions. Facilitators included organisational factors, leadership and training and an enabling attitude and approach by professionals. Trained project managers, patients taking an active role in research and adaptive strategies by researchers all helped person-centred care delivery. CONCLUSION: At the University of Gothenburg, a model of person-centred care is being initiated and integrated into practice through research. Knowledgeable, well-trained professionals facilitate the routines of narrative elicitation and partnership. Strong leadership and adaptive strategies are important for overcoming existing practices, routines and methods of documentation. This study provides guidance for practitioners when delivering and adapting person-centred care in different contexts.
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Atención a la Salud/organización & administración , Atención Dirigida al Paciente , Humanos , SueciaRESUMEN
Self-management policies have presented opportunities for patients with long-term conditions to take control and actively improve their health. However, the work of self-management appears to be packaged in the form of essential and desirable skills and attributes required for success. This article presents the findings of a qualitative study, employing longitudinal diary interviews with 21 patients aged between 60 and 85 years diagnosed with coronary heart disease from three contrasting general practice areas. Drawing on concepts of the care of the self and the reflexive self, this article presents the diversity of self-management practices by older patients in the context of their lifeworld. Illustrated through individual case studies, it clearly identifies where patients are engaged self-managers with the agency, knowledge and self-discipline to modify their behaviour for an improved health outcome. This study highlights their life and illness perspectives as well as those of patients who are burdened with emotional insecurity, comorbidities and caring responsibilities. It shows the spectrum of relationships with health professionals that influence engaged self-management. We suggest that policy initiatives that favour behavioural change neglect social context and the individualised practices that are a necessary response to structural and psychosocial constraints.
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Enfermedad Coronaria/terapia , Autocuidado/psicología , Apoyo Social , Anciano , Anciano de 80 o más Años , Enfermedad Crónica , Inglaterra , Femenino , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Clase Social , Sociología Médica , Medicina EstatalRESUMEN
BACKGROUND: Researchers have widely documented the pervasiveness of HIV stigma and discrimination, and its impact on people living with HIV. Only a few studies, however, have analysed the perceptions of women living with HIV accessing sexual and reproductive health (SRH) services. This study explores the experiences of stigma of HIV-positive clients attending family planning and post-natal services and implications for service use and antiretroviral therapy (ART) adherence. Our aim was to gain a better understanding of the impact of various dimensions of stigma on service use and ART adherence among HIV clients in order to inform the response of integrated SRH services. METHODS: In-depth interviews were conducted with 48 women living with HIV attending SRH services in two districts in Kenya. Data were coded using Nvivo 8 and analysed using a thematic analysis approach. RESULTS: Findings show that many women living with HIV report high levels of anticipated stigma, resulting in a desire to hide their status from family and friends for fear of being discriminated against. Many women feared desertion following disclosure of their positive status to partners. Consequently some women preferred to hide their status and adhere to HIV treatment in secret. However, the majority of study participants attending postnatal care (PNC) services also revealed that anticipated stigma does not adversely affect their HIV drug uptake and ART adherence, as their drive to live outweighs their fear of stigma. Our findings also seem to suggest a preference for specialist HIV services by some family planning (FP) clients because of better confidentiality and reduced opportunities for unwanted disclosure that could lead to stigma. CONCLUSIONS: The findings highlight that anticipated stigma leading to low disclosure is widespread and sometimes reinforced by health providers' actions and facility layout (contributing to enacted stigma). However, the motivation to stay healthy and look after the children appears in many cases to override fears of stigma related to ART adherence in our client-based sample.
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Infecciones por VIH/psicología , Servicios de Salud Reproductiva , Estigma Social , Adolescente , Adulto , Fármacos Anti-VIH/uso terapéutico , Demografía , Femenino , Infecciones por VIH/tratamiento farmacológico , Humanos , Entrevistas como Asunto , Investigación CualitativaRESUMEN
Loneliness is represented in UK policy as a public health problem with consequences in terms of individual suffering, population burden and service use. However, loneliness is historically and culturally produced; manifestations of loneliness and social isolation also require social and cultural analysis. We explored meanings of loneliness and social isolation in the UK 2020-2022 and considered what the solutions of telepresence technologies reveal about the problems they are used to address. Through qualitative methods we traced the introduction and use of two telepresence technologies and representations of these, and other technologies, in policy and UK media. Our dataset comprises interviews, fieldnotes, policy documents, grey literature and newspaper articles. We found loneliness was represented as a problem of individual human connection and of collective participation in social life, with technology understood as having the potential to enhance and inhibit connections and participation. Technologically-mediated connections were frequently perceived as inferior to in-person contact, particularly in light of the enforced social isolation of the COVID-19 pandemic. We argue that addressing loneliness requires attending to other, related, health and social problems and introducing technological solutions requires integration into the complex social and organisational dynamics that shape technology adoption. We conclude that loneliness is primarily understood as a painful lack of co-presence, no longer regarded as simply a subjective experience, but as a social and policy problem demanding resolution.
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Background Since 2022, general practice has shifted from responding to the acute challenges of COVID-19 to restoring full services, using remote and digital modalities as well as traditional in-person care. Aim To examine how quality domains are addressed in contemporary UK general practice. Design and setting Multi-site, mostly qualitative longitudinal case study, placed in national policy context. Method Data were collected from longitudinal ethnographic case studies of 12 general practices (2021-2023); multi-stakeholder workshops; stakeholder interviews; patient surveys; official reports; and publicly-accessible patient experience data. Data were coded thematically and analysed using Institute of Medicine domains, Starfield's core features of primary care and sociological and socio-technical theories. Results Quality efforts in UK general practice occur within cumulative impacts of financial austerity, loss of resilience, increasingly complex patterns of illness and need, a diverse and fragmented workforce, infrastructure unfit for purpose, and distanciated ways of working. Providing the human elements of traditional general practice is difficult and sometimes impossible. Triage systems designed to increase efficiency have introduced new forms of inefficiency and compromised other quality domains. Long-term condition management varies in quality; amidst some convenience gains, some practices rely on remote, asynchronous data entry by patients and fragmented care by underqualified staff. Measures to mitigate digital exclusion do not compensate for extremes of structural disadvantage. Many staff are stressed and demoralised. Conclusion Contemporary hybrid general practice features changes with the unintended effect of dehumanising, compromising and fragmenting care. Risks to patients and the core values of general practice should be urgently addressed.
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BACKGROUND: Contemporary general practice includes many kinds of remote encounter. The rise in telephone, video and online modalities for triage and clinical care requires clinicians and support staff to be trained, both individually and as teams, but evidence-based competencies have not previously been produced for general practice. AIM: To identify training needs, core competencies, and learning methods for staff providing remote encounters. DESIGN AND SETTING: Mixed-methods study in UK general practice. METHOD: Data were collated from longitudinal ethnographic case studies of 12 general practices; a multi-stakeholder workshop; interviews with policymakers, training providers, and trainees; published research; and grey literature (such as training materials and surveys). Data were coded thematically and analysed using theories of individual and team learning. RESULTS: Learning to provide remote services occurred in the context of high workload, understaffing, and complex workflows. Low confidence and perceived unmet training needs were common. Training priorities for novice clinicians included basic technological skills, triage, ethics (for privacy and consent), and communication and clinical skills. Established clinicians' training priorities include advanced communication skills (for example, maintaining rapport and attentiveness), working within the limits of technologies, making complex judgements, coordinating multi-professional care in a distributed environment, and training others. Much existing training is didactic and technology focused. While basic knowledge was often gained using such methods, the ability and confidence to make complex judgements were usually acquired through experience, informal discussions, and on-the-job methods such as shadowing. Whole-team training was valued but rarely available. A draft set of competencies is offered based on the findings. CONCLUSION: The knowledge needed to deliver high-quality remote encounters to diverse patient groups is complex, collective, and organisationally embedded. The vital role of non-didactic training, for example, joint clinical sessions, case-based discussions, and in-person, whole-team, on-the-job training, needs to be recognised.
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Medicina General , Humanos , Medicina Familiar y Comunitaria , Competencia Clínica , Antropología Cultural , Encuestas y CuestionariosRESUMEN
OBJECTIVES: The law in relation to HIV has prominence in the formation and regulation of moral norms-in regard to human rights, and in regard to criminalisation, the policing of sexuality and intimate behaviours, and the production of stigma. The research focuses on the potential and impotence of the law to govern for, and enable, the human right to health in the context of HIV in Malawi. METHODS: This one-country qualitative case study (Malawi) action research involved data collection during a 6-month period (October 2010-March 2011). Datasets include interviews with law commissioners (n=10), opinion leaders (n=22), life story participants who were people living with and closely affected by HIV (n=20), reflections of the action research team (n=6), and a review of the proposed HIV and AIDS (Prevention and Management) Bill, legal and policy documents. RESULTS: The analysis of the perspectives of the law commissioners, who formed the Special Law Commission and drafted the Bill, revealed that stigma was consciously invoked to delineate social norms and guide governance of notions of personal responsibility. The analysis of the perspectives of the life story participants, whose lives would be most directly impacted if these provisions came into force, reveals the extent to which the stigma associating criminality and HIV is falling on fertile ground through its engagement and generation of internalised stigma; unearthing an uneasy link between stigma and the law in response to HIV in Malawi. DISCUSSION: The results indicated that the proposed HIV Bill in Malawi manifests a tension between intention and impact. By incorporating criminal sanctions as part of the proposed HIV Bill, the lawmakers actively seek to use stigma to shape social attitudes and attempt to guide normative behaviour.
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Derecho Penal , Transmisión de Enfermedad Infecciosa/legislación & jurisprudencia , Seropositividad para VIH/transmisión , Derechos Humanos/legislación & jurisprudencia , Responsabilidad Legal , Conducta Sexual , Percepción Social , Estigma Social , Adulto , Transmisión de Enfermedad Infecciosa/prevención & control , Femenino , Guías como Asunto , Infecciones por VIH/prevención & control , Infecciones por VIH/transmisión , Seropositividad para VIH/epidemiología , Conocimientos, Actitudes y Práctica en Salud , Humanos , Intención , Malaui/epidemiología , Masculino , Motivación , Formulación de Políticas , Opinión Pública , Investigación Cualitativa , Encuestas y CuestionariosRESUMEN
BACKGROUND: The value of continuity in primary care has been demonstrated for multiple positive outcomes. However, little is known about how the expansion of remote and digital care models in primary care have impacted continuity. AIM: To explore the impact of the expansion of remote and digital care models on continuity in primary care. DESIGN AND SETTING: A systematic review of continuity in primary care. METHOD: A keyword search of Embase, MEDLINE, and CINAHL databases was used along with snowball sampling to identify relevant English-language qualitative and quantitative studies from any country between 2000 and 2022, which explored remote or digital approaches in primary care and continuity. Relevant data were extracted, analysed using GRADE-CERQual, and narratively synthesised. RESULTS: Fifteen studies were included in the review. The specific impact of remote approaches on continuity was rarely overtly addressed. Some patients expressed a preference for relational continuity depending on circumstance, problem, and context; others prioritised access. Clinicians valued continuity, with some viewing remote consultations more suitable where there was high episodic or relational continuity. With lower continuity, patients and clinicians considered remote consultations harder, higher risk, and poorer quality. Some evidence suggested that remote approaches and/or their implementation risked worsening inequalities and causing harm by reducing continuity where it was valuable. However, if deployed strategically and flexibly, remote approaches could improve continuity. CONCLUSION: While the value of continuity in primary care has previously been well demonstrated, the dearth of evidence around continuity in a remote and digital context is troubling. Further research is, therefore, needed to explore the links between the shift to remote care, continuity and equity, using real-world evaluation frameworks to ascertain when and for whom continuity adds most value, and how this can be enabled or maintained.
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Consulta Remota , Humanos , Investigación , Atención Primaria de SaludRESUMEN
A strong global commitment exists to eliminate HIV-related stigma and discrimination, and multiple strategies to reduce or eliminate stigma and discrimination have been tried. Using a PICOTS framework and applying the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) criteria, we undertook a systematic review to determine the success of interventions aiming to address internalized stigma, stigma and discrimination in healthcare, and at the legal or policy level, and to identify their critical success factors. Random effects meta-analyses summarized results wherever possible. We carried out a component analysis to identify and characterize successful interventions. Internalized stigma interventions were diverse: across all studies, we found a reduction of stigma but it was not statistically significant [standardized mean difference (SMD) 0.56; confidence interval (CI) 0.31-1.02; 17 studies). For interventions to address stigma and discrimination in healthcare settings, effect estimates varied considerably but most studies showed positive effects (SMD 0.71; CI 0.60-0.84, 8 studies). Boosted regression analyses found that a combined approach comprising education, counseling, community participation, support person, and access to a HIV specialist often yielded success. Studies of efforts to address stigma and discrimination through law and policy documented, mostly qualitatively, the effect of court cases and directives. Across a range of settings and populations, promising interventions have been identified that, through diverse pathways, have positively impacted the types of stigma and discrimination studied. This evidence base must be built upon and brought to scale to help reach global HIV-related targets and, most importantly, improve the health and quality of life of people with HIV.
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Infecciones por VIH , Calidad de Vida , Humanos , Infecciones por VIH/psicología , Estigma Social , ConsejoRESUMEN
INTRODUCTION: HIV-related internalized stigma remains a major contributor to challenges experienced when accessing and providing HIV diagnosis, care and treatment services. It is a key barrier to effective prevention, treatment and care programs. This study investigated experiences of internalized stigma among people living with HIV in Malawi. METHODOLOGY: A participatory cross-sectional study design of participants from eight districts across the three administrative regions of Malawi. Data were collected using Key Informant Interviews (n = 22), Focus Group Discussions (n = 4) and life-stories (n = 10). NVIVO 12 software was used for coding applying both deductive and inductive techniques. Health Stigma and Discrimination Framework was used as a theoretical and analytical framework during data analysis. RESULTS: Overt forms of stigma and discrimination were more recognizable to people living with HIV while latent forms, including internalized stigma, remained less identifiable and with limited approaches for mitigation. In this context, manifest forms of HIV-related stigma intersected with latent forms of stigma as people living with HIV often experienced both forms of stigma concurrently. The youths, HIV mixed-status couples and individuals newly initiated on ART were more susceptible to internalized stigma due to their lack of coping mechanism, unavailability of mitigation structures, and lack of information. Broadly, people living with HIV found it difficult to identify and describe internalized stigma and this affected their ability to recognize it and determine an appropriate course of action to deal with it. CONCLUSION: Understanding the experiences of internalized stigma is key to developing targeted and context specific innovative solutions to this health problem.
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Infecciones por VIH , Adolescente , Humanos , Estudios Transversales , Infecciones por VIH/diagnóstico , Estigma Social , Adaptación Psicológica , Grupos FocalesRESUMEN
BACKGROUND: Triage and clinical consultations increasingly occur remotely. We aimed to learn why safety incidents occur in remote encounters and how to prevent them. SETTING AND SAMPLE: UK primary care. 95 safety incidents (complaints, settled indemnity claims and reports) involving remote interactions. Separately, 12 general practices followed 2021-2023. METHODS: Multimethod qualitative study. We explored causes of real safety incidents retrospectively ('Safety I' analysis). In a prospective longitudinal study, we used interviews and ethnographic observation to produce individual, organisational and system-level explanations for why safety and near-miss incidents (rarely) occurred and why they did not occur more often ('Safety II' analysis). Data were analysed thematically. An interpretive synthesis of why safety incidents occur, and why they do not occur more often, was refined following member checking with safety experts and lived experience experts. RESULTS: Safety incidents were characterised by inappropriate modality, poor rapport building, inadequate information gathering, limited clinical assessment, inappropriate pathway (eg, wrong algorithm) and inadequate attention to social circumstances. These resulted in missed, inaccurate or delayed diagnoses, underestimation of severity or urgency, delayed referral, incorrect or delayed treatment, poor safety netting and inadequate follow-up. Patients with complex pre-existing conditions, cardiac or abdominal emergencies, vague or generalised symptoms, safeguarding issues, failure to respond to previous treatment or difficulty communicating seemed especially vulnerable. General practices were facing resource constraints, understaffing and high demand. Triage and care pathways were complex, hard to navigate and involved multiple staff. In this context, patient safety often depended on individual staff taking initiative, speaking up or personalising solutions. CONCLUSION: While safety incidents are extremely rare in remote primary care, deaths and serious harms have resulted. We offer suggestions for patient, staff and system-level mitigations.
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Limited studies are available on how decisions and perceptions on SARS-CoV-2 vaccination have changed since the start of vaccination availability. We performed a qualitative study to identify factors critical to SARS-CoV-2 vaccination decision making and how perspectives evolved among African American/Black, Native American, and Hispanic communities disproportionately affected by COVID-19 and social and economic disadvantage. We conducted 16 virtual meetings, with 232 participants in wave 1 meetings (December 2020) and with 206 returning participants in wave 2 meetings (January and February 2021). Wave 1 vaccine concerns in all communities included information needs, vaccine safety, and speed of vaccine development. Lack of trust in government and the pharmaceutical industry was influential, particularly among African American/Black and Native American participants. Participants showed more willingness to get vaccinated at wave 2 than at wave 1, indicating that many of their information needs had been addressed. Hesitancy remained greater among African American/Black and Native American participants than among Hispanic participants. Participants in all groups indicated that conversations tailored to their community and with those most trustworthy to them would be helpful. To overcome vaccine hesitancy, we propose a model of fully considered SARS-CoV-2 vaccine decision making, whereby public health departments supply information, align with community values and recognize lived experiences, offer support for decision making, and make vaccination easy and convenient.