...the UNAIDS Global AIDS Strategy explicitly describes the goal that “people living with HIV, key populations and people at risk of HIV enjoy human rights, equality and dignity, free of stigma and ...discrimination” to realize optimal HIV outcomes 2. Authors apply a life-course framework to explore a time of critical life stage transition, finding the young people in the study were already engaged in finding ways to manage their own healthcare, while refusing to internalize stigma, and were becoming invested with greater responsibility for their own, and their families’ health. The authors argue that although interventions focused on PrEP or antiretroviral therapy uptake and adherence have and will continue to benefit communities, these HIV “status-segregated” interventions can perpetuate HIV stigma and other forms of oppression among those in most need of HIV programmes. The authors present findings from a study adopting a systems perspective to understand how to tackle structural stigma via the Meaningful Involvement of People with HIV, while highlighting the challenges in demonstrating peer leadership from people living with HIV.
Introduction
There is strong global commitment to eliminate HIV‐related stigma, and work in this area continues to evolve. Wide variation exists in frameworks and measures used.
Methods
Building on ...the existing knowledge syntheses, we carried out a systematic review to identify frameworks and measures aiming to understand or assess internalized stigma, stigma and discrimination in healthcare, and in law and policy. The review addressed two questions: Which conceptual frameworks have been proposed to assess internalized stigma, stigma and discrimination experienced in healthcare settings, and stigma and discrimination entrenched in national laws and policies? Which measures of these different types of stigma and discrimination have been proposed and what are their descriptive properties? Searches, completed on 6 May 2021, cover publications from 2008 onwards. The review is registered in PROSPERO (CRD42021249348), the protocol incorporated stakeholder input, and the data are available in the Systematic Review Data Repository.
Results and discussion
Sixty‐nine frameworks and 50 measures met the inclusion criteria. Critical appraisal figures and detailed evidence tables summarize these resources. We established a compendium of frameworks and a catalogue of measures of HIV‐related stigma and discrimination. Seventeen frameworks and 10 measures addressed at least two of our focus domains, with least attention to stigma and discrimination in law and policy. The lack of common definitions and variability in scope and structure of HIV‐related frameworks and measures creates challenges in understanding what is being addressed and measured, both in relation to stigma and efforts to mitigate or reduce its harmful effects. Having comparable data is essential for tracking change over time within and between interventions.
Conclusions
This systematic review provides an evidence base of current understandings of HIV‐related stigma and discrimination and how further conceptual clarification and increased adaptation of existing tools might help overcome challenges across the HIV care continuum. With people living with HIV at the centre, experts from different stakeholder groups could usefully collaborate to guide a more streamlined approach for the field. This can help to achieve global targets and understand, measure and help mitigate the impact of different types of HIV‐related stigma on people's health and quality of life.
ObjectivesTo explore patients’ experiences of getting a diagnosis of eye disease, the psychological impact of this and how this could be improved.DesignAn exploratory qualitative interview study ...using a narrative approach and inductive methods.SettingThis study was conducted with patients who had attended ophthalmic appointments in primary and secondary care and in opticians located in the South of England.Participants18 people diagnosed with eye disease in England.ResultsFour themes were identified: the convoluted process of being diagnosed, the impact of clinicians’ words, the search for information and reflections on what could be improved. The prolonged wait for a definitive diagnosis was a source of frustration and anxiety for many patients. Professionals’ words and tone when delivering a diagnosis sometimes affected a patient’s view of their diagnosis and their later ability to come to terms with it. Patients were desperate for information, but many felt they were not provided with sufficient information at the time of diagnosis and did not know whether to trust information found online. Participants felt the provision of a hospital liaison service and/or counselling could mitigate the impact on patients and families.ConclusionsInteractions with clinicians can have a lasting impact on how a diagnosis is experienced and how well the patient is able to come to terms with their visual impairment. Receiving little or no information left patients feeling lost and unsupported. This led them to search for information from less reliable sources. Clinicians should consider how they communicate a diagnosis to patients, how and when they offer information about diagnosis and prognosis and where possible signpost patients to additional support systems and counselling services as early as possible.
Despite decades of scientific advances in prevention and treatment, and widespread awareness-raising efforts 1, stigma and discrimination remain “twin barriers” impeding progress in response to HIV ...and are a central concern of the current UNAIDS Global AIDS Strategy to end inequalities. In a similar vein, funders are following the evidence and investing in analyses and programs that have been shown to be effective to address stigma and discrimination, as evinced by the Global Fund's commitment; the attention to intersectional and HIV-related stigma by the National Institutes of Health; and the investment in consolidating the evidence base and the state of the field by the Bill and Melinda Gates Foundation. ...several efforts have attempted to conceptualize and further develop definitions of stigma.
When a person is diagnosed with a condition leading to vision loss, life cannot go on as before. As well as developing new ways to manage their daily activities, people must manage the shock to their ...identity and decide how they now wish to present themselves. These add to the cognitive load of people with who experience vision loss over and above that of their sighted peers. Our qualitative interview study used a thematic analysis to explore the experiences of people with a condition causing vision loss to understand the work they undertook to integrate this diagnosis into their identity (or not) and to decide how and when to communicate their vision loss to others. People often navigated between identities: their identity prior to the diagnosis, and “the blind person” – an identity forced upon them. Linked to this, but a separate task, was deciding how they wished to present themselves to the world – to fully acknowledge their disabilities, to completely cover them, or to choose a path between these extremes. Self-presentation also depended on the audience (family, friends, colleagues, strangers) and this decision was not a single event: most people faced the necessity of repeating this process many times as their vision fluctuated or circumstances changed, and the cognitive effort this required exacted a toll. We build on the work of the disabled identity, identity continuity and self-presentation theory to describe the experiences of people managing their sense of self when faced with the uncertainty of deteriorating vision and deciding how to present themselves to others. This work requires considerable cognitive effort, adding an additional cognitive penalty of disability to those already coping with the practical difficulties of vision loss.
•People who have vision loss often navigate between identities – their previous identity and their “disabled identity”•Many work toward identity continuity, particularly in terms of retaining their identity as an independent adult.•Vision loss is often invisible to observers, so people had to decide how to present themselves to others.•Self-presentation decisions could vary for different audiences and often had to be made repeatedly as vision fluctuated•These additional tasks take considerable effort, exerting a cognitive penalty for those with a visual impairment.
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.
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).
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.
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.
Establishing and running remote consultation services is challenging politically (interest groups may gain or lose), organizationally (remote consulting requires implementation work and new roles and ...workflows), economically (costs and benefits are unevenly distributed across the system), technically (excellent care needs dependable links and high-quality audio and images), relationally (interpersonal interactions are altered), and clinically (patients are unique, some examinations require contact, and clinicians have deeply-held habits, dispositions and norms). Many of these challenges have an under-examined ethical dimension. In this paper, we present a novel framework, Planning and Evaluating Remote Consultation Services (PERCS), built from a literature review and ongoing research. PERCS has 7 domains—the reason for consulting, the patient, the clinical relationship, the home and family, technologies, staff, the healthcare organization, and the wider system—and considers how these domains interact and evolve over time as a complex system. It focuses attention on the organization's digital maturity and digital inclusion efforts. We have found that both during and beyond the pandemic, policymakers envisaged an efficient, safe and accessible remote consultation service delivered through state-of-the art digital technologies and implemented via rational allocation criteria and quality standards. In contrast, our empirical data reveal that strategic decisions about establishing remote consultation services, allocation decisions for appointment type (phone, video, e-, face-to-face), and clinical decisions when consulting remotely are fraught with contradictions and tensions—for example, between demand management and patient choice—leading to both large- and small-scale ethical dilemmas for managers, support staff, and clinicians. These dilemmas cannot be resolved by standard operating procedures or algorithms. Rather, they must be managed by attending to here-and-now practicalities and emergent narratives, drawing on guiding principles applied with contextual judgement. We complement the PERCS framework with a set of principles for informing its application in practice, including education of professionals and patients.
The present study aimed to update previous meta-analyses of gCBT, and focus specifically on recent studies in which the Beck Depression Inventory (BDI) was used to assess outcome. PsycINFO, PubMed, ...EMBASE, and Cochrane were searched for eligible studies. Both randomized controlled trials (RTC,
k
= 9) and non-RTCs (
k
= 1) published since 2000 were included. On the BDI large significant effect sizes were found for gCBT compared with treatment as usual (TAU,
d
= 4.64), wailing list controls (WLC,
d
= 1.20), and both of these comparison conditions combined with studies of well-defined alternative treatments (ALT,
d
= 1.61). On the BDI a moderate effect size (
d
= 0.53) was found for comparisons of gCBT and ALT groups. gCBT also had large and significant effects on depressive cognition assessed with the Automatic Thoughts Questionnaire and the Dysfunctional Attitudes Scale compared with WLC and ALT comparison groups (
d
= 2.66). This meta-analysis shows that gCBT is a robust intervention for depression in adults.
Abstract Purpose Working with health providers to reduce HIV stigma in the healthcare setting is an important strategy to improve service utilization and quality of care, especially for young people ...who are sexually active before marriage, are sexual minorities, or who sell sex. A stigma reduction training program for health providers in Bangladesh was evaluated. Methods A cohort of 300 healthcare providers were given a self-administered questionnaire, then attended a 2-day HIV and sexual and reproductive health and rights training (including a 90-minute session on stigma issues). Six months later, the cohort repeated the survey and participated in a 1-day supplemental training on stigma, which included reflection on personal values and negative impacts of stigma. A third survey was administered 6 months later. A cross-sectional survey of clients age 15–24 years was implemented before and after the second stigma training to assess client satisfaction with services. Results Provider agreement that people living with HIV should be ashamed of themselves decreased substantially (35.3%–19.7%–16.3%; p < .001), as did agreement that sexually active young people (50.3%–36.0%–21.7%; p < .001) and men who have sex with men (49.3%–38.0%–24.0%; p < .001) engage in “immoral behavior.” Young clients reported improvement in overall satisfaction with services after the stigma trainings (63.5%–97.6%; p < .001). Conclusions This study indicates that a targeted stigma reduction intervention can rapidly improve provider attitudes and increase service satisfaction among young people. More funding to scale up these interventions is needed.
The Covid-19 pandemic-related rise in remote consulting raises questions about the nature and type of risks in remote general practice AIM: To develop an empirically-based and theory-informed ...taxonomy of risks associated with remote consultations.
Qualitative sub-study of data selected from the wider datasets of three large, multi-site, mixed-method studies of remote care in general practice prior to and during the Covid-19 pandemic in the UK METHOD: Semi-structured interviews and focus groups with a total of 176 clinicians, and 45 patients. We analysed data thematically, taking account of an existing framework of domains of clinical risk.
The Covid-19 pandemic brought changes to estates (eg, how waiting rooms were used), access pathways, technologies, and interpersonal interactions. Six domains of risk were evident in relation to1 practice organisation and set-up (including digital inequalities of access, technology failure and reduced service efficiency); 2 communication and the therapeutic relationship (including a shift to more transactional consultations); 3 quality of clinical care (including missed diagnoses, safeguarding challenges, over-investigation and over-treatment); 4 increased burden on the patient (eg, to self-examine and navigate between services); 5 reduced opportunities for screening and managing the social determinants of health; and 6 workforce (including increased clinician stress and fewer opportunities for learning).
Notwithstanding potential benefits, if remote consultations are to work safely, risks must be actively mitigated by measures that include digital inclusion strategies, enhanced safety-netting and training and support for staff.
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