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From activism to secrecy: contemporary experiences of living with HIV in London in people diagnosed from 1986 to 2014

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Title: From activism to secrecy: contemporary experiences of living with HIV in London in people diagnosed from 1986 to 2014
Authors: Rai, T
Bruton, P
Day, S
Ward, H
Item Type: Journal Article
Abstract: Background: Successes in biomedicine have transformed HIV from a debilitating and frequently fatal infection to a chronic, manageable condition. Objective: To 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. Design: Qualitative interviews with fifty-two people living with HIV who were diagnosed during different phases in the history of the epidemic. Setting and participants Participants 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 1997-2005 (complex ART), generation 3 from 2006-2012 (simpler ART) and generation 4 were diagnosed in the year before the study (2013-2014). Results: Participants 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. Conclusion: The 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.
Issue Date: 1-Dec-2018
Date of Acceptance: 3-Jul-2018
URI: http://hdl.handle.net/10044/1/62032
DOI: https://dx.doi.org/10.1111/hex.12816
ISSN: 1369-6513
Publisher: Wiley Open Access
Start Page: 1134
End Page: 1141
Journal / Book Title: Health Expectations
Volume: 21
Issue: 6
Copyright Statement: © 2018 The Authors. Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Sponsor/Funder: Imperial College Healthcare NHS Trust- BRC Funding
Imperial College Healthcare Charity
Imperial College Healthcare NHS Trust- BRC Funding
Imperial College Healthcare NHS Trust- BRC Funding
Funder's Grant Number: RD710
7006/P31U
RDC02 79560
RDF01
Keywords: Science & Technology
Life Sciences & Biomedicine
Health Care Sciences & Services
Health Policy & Services
Public, Environmental & Occupational Health
chronic disease
continuity of patient care
HIV clinic
HIV infection
normalization
privacy
public health
self-care
social stigma
social support
ANTIRETROVIRAL THERAPY
STORIES
STIGMA
CARE
HIV clinic
HIV infection
chronic disease
continuity of patient care
normalization
privacy
public health
self-care
social stigma
social support
1117 Public Health and Health Services
1110 Nursing
1701 Psychology
Public Health
Publication Status: Published
Online Publication Date: 2018-08-30
Appears in Collections:School of Public Health