BackgroundSuccesses in biomedicine have transformed HIV from a debilitating and frequently fatal infection to a chronic, manageable condition.ObjectiveTo explore how the contemporary metanarrative of HIV as a chronic condition is understood by patients and how it varies depending on when they were diagnosed.DesignQualitative interviews with 52 people living with HIV who were diagnosed during different phases in the history of the epidemic.Setting and participantsParticipants were recruited from two HIV clinics in London to include four “HIV generations”: generation 1 were those who had been diagnosed pre‐1997 (pre‐ART), generation 2 from 1997 to 2005 (complex ART), generation 3 from 2006 to 2012 (simpler ART) and generation 4 diagnosed in the year before the study (2013‐2014).ResultsParticipants in all HIV generations took their medication as prescribed, attended clinic appointments and were well informed about their immunological biomarkers. While the pre‐treatment generation had been engaged in community endeavours such as activism, public education and use of support groups, those more recently diagnosed had little experience of collective activities and their HIV was essentially a private matter, separate from their social identity. These strategies worked for some; however, those experiencing clinical or social problems related to HIV or wider issues often relied exclusively on their HIV clinic for wider support.ConclusionThe loss of public conversation around HIV, the imperative for patients to take on greater individual responsibility for HIV management and the streamlining of HIV services alongside reductions in ancillary support services may expose some people to suboptimal health outcomes.
Introduction UNAID S has recommended that in 14 countries across sub‐Saharan Africa ( SSA ), 90% of men aged 10 to 29 years should be circumcised by 2021 to help reduce transmission of HIV . To achieve this target demand creation programmes have been widely implemented to increase demand for Voluntary Medical Male Circumcision ( VMMC ). This review explores the effectiveness of demand creation interventions and factors affecting programme implementation. Methods We completed a mixed methods systematic review searching Medline, Embase, Global health, psyc INFO and CINAHL databases in August 2018 with no time restrictions. Demand creation interventions conducted in SSA were categorized and quantitative data about VMMC uptake was used to compare relative and absolute effectiveness of interventions. Qualitative data were summarized into themes relevant to the delivery and impact of programmes. Results and discussion Eighteen of the 904 titles were included in the review. Effective interventions were identified in each demand creation category: financial incentives, counselling or education, involvement of influencers and novel information delivery. Of the 11 randomized controlled trials ( RCT s), the greatest absolute impact on VMMC prevalence was seen with a complex intervention including VMMC promotion training for religious leaders (compared to control: 23% (95% CI 22.8 to 23.8) absolute increase; odds ratio ( OR ) 3.2 (1.4 to 7.3)). Financial incentives generally produced the largest relative effects with men up to seven‐times more likely to undergo VMMC in the intervention arm compared to control (adjusted OR 7.1 (95% CI 2.4 to 20.8), 7.1% (3.7 to 10.5) absolute increase). Qualitative findings suggest that interventions are more impactful when they are judged appropriate and acceptable by the target population; delivered by people with relevant personal experience; and addressing broader social and cultural influences through partnership with and education of community leaders. Conclusions A range of demand creation interventions can increase VMMC uptake. The most acceptable and effective interventions are financial incentives framed as fair compensation (relative effect) and programmes of education or counselling delivered by people who are influential in the community (absolute effect). Future research should include larger studies with longer follow‐up and a consistent definition of VMMC uptake.
Background Having a stroke or transient ischaemic attack increases the risk of a subsequent one, especially with high blood pressure (BP). Home‐based BP management can be effective at maintaining optimal BP. Objective To describe the optimization of a digital intervention for stroke patients and the value of participant diversity, using the person‐based approach (PBA) and integral patient and public involvement (PPI). Setting and participants Stroke patients recruited from primary care and community settings, and health‐care professionals in primary care, in England and Ireland. Design Three linked qualitative studies conducted iteratively to develop an intervention using the PBA, with integral PPI. Intervention The BP: Together intervention, adapted from existing BP self‐monitoring interventions, is delivered via mobile phone or web interface to support self‐monitoring of BP at home. It alerts patients and their clinicians when a change in antihypertensive medication is needed. Findings Feedback from a diverse range of participants identified potential barriers, which were addressed to improve the intervention accessibility, feasibility and persuasiveness. Easy‐to‐read materials were developed to improve usability for patients with aphasia and lower literacy. The importance of including family members who support patient care was also highlighted. Feedback messages regarding medication change were refined to ensure usefulness for patients and clinicians. Discussion Input from PPI alongside qualitative research with a diverse study sample allowed the creation of a simple and equitable BP management intervention for stroke patients. Patient involvement Two PPI co‐investigators contributed to design, conduct of study, data interpretation and manuscript preparation; community PPI sessions informed early planning. Study participants were stroke patients and family members.
The lack of ethnic diversity in health research participation is a multi‐dimensional problem. Racism and intersectional disadvantage compel us to use racial and ethnic categories to explore health, but race theorists warn that these can be essentialising and pathologising. Yet, the alternative, the pursuit of colour‐blindness, can render the impact of race and ethnicity on health invisible. This paper describes the attempt to recruit an ethnically diverse sample to inform the development of an intervention for stroke patients. The study revealed deep uncertainties and tensions, which we use to re‐examine our own positionalities and perspectives. We focus on the experiences of researchers and participants to show how ‘usual’ research practices are unwittingly exclusionary and promote ‘methodological whiteness’ (The British Journal of Sociology, 2017, 68, S214). Calls for greater diversity in research are frequently made, yet health research remains tainted by the use of problematic epistemological starting points, rendering participation by minoritised people uneasy. Medical sociologists, especially those engaged in clinical trials, have a vital role to play in recalibrating health research to attend to ethnicity and race. This requires us to reflect on our practices, to recognise where we are complicit in replicating social inequalities and to actively engage with communities to produce more inclusive research.
Men who consult their GP about testing are often already committed to having the test. When information about the benefits and limitations of PSA testing is provided, at that stage it may be too late for it to play a part in their decision. Making balanced information available to men in the community may be a more effective way to promote informed decision making and to facilitate more useful discussions with the GP.
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