Living with HIV postdiagnosis: a qualitative study of the experiences of Nairobi slum residents
Identifieur interne : 002264 ( Pmc/Corpus ); précédent : 002263; suivant : 002265Living with HIV postdiagnosis: a qualitative study of the experiences of Nairobi slum residents
Auteurs : Eliud Wekesa ; Ernestina CoastSource :
- BMJ Open [ 2044-6055 ] ; 2013.
Abstract
To characterise the experiences of heterosexual men and women living with HIV postdiagnosis and explain these experiences in relation to their identity and sexuality.
Qualitative study using in-depth interviews and a theoretically informed biographic disruption theory.
Interviews were conducted in two Nairobi slums (Kenya).
41 HIV-infected heterosexual men and women aged 18 years or older.
People living with HIV have divergent experiences surrounding HIV diagnosis. Postdiagnosis, there are multiple phases of identity transition, including status (non-)disclosure, and attempts at identity repair and normalcy. For some people, this process involves a transition to a new self-identity, incorporating both HIV and antiretroviral treatment (ART) into their lives. For others, it involves a partial transition, with some aspects of their prediagnosis identity persisting, and for others it involves a rejection of HIV identity. Those people who were able to incorporate HIV/AIDS in their identity, without it being disruptive to their biography, were pursuing safer sexual and reproductive lives. By contrast, those people with a more continuous biography continued to reflect their prediagnosis identity and sexual behaviour.
People living with HIV/AIDS (PLWHA) had to rework their sense of identity following diagnosis in the context of living in a slum setting. Men and women living with HIV in slums are poorly supported by health systems and services as they attempt to cope with a diagnosis of HIV. Given the availability of ART, health services and professionals need to support the rights of PLWHA to be sexually active if they want to and achieve their fertility goals, while minimising HIV transmission risk.
Url:
DOI: 10.1136/bmjopen-2012-002399
PubMed: 23645922
PubMed Central: 3646186
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<record><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">Living with HIV postdiagnosis: a qualitative study of the experiences of Nairobi slum residents</title><author><name sortKey="Wekesa, Eliud" sort="Wekesa, Eliud" uniqKey="Wekesa E" first="Eliud" last="Wekesa">Eliud Wekesa</name><affiliation><nlm:aff id="af1"><institution>London School of Economics—Social Policy</institution>,<addr-line>London</addr-line>,<country>UK</country></nlm:aff></affiliation></author><author><name sortKey="Coast, Ernestina" sort="Coast, Ernestina" uniqKey="Coast E" first="Ernestina" last="Coast">Ernestina Coast</name><affiliation><nlm:aff id="af2"><institution>Population Council</institution>,<addr-line>Reproductive Health Program, Nairobi</addr-line>,<country>Kenya</country></nlm:aff></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PMC</idno><idno type="pmid">23645922</idno><idno type="pmc">3646186</idno><idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3646186</idno><idno type="RBID">PMC:3646186</idno><idno type="doi">10.1136/bmjopen-2012-002399</idno><date when="2013">2013</date><idno type="wicri:Area/Pmc/Corpus">002264</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Corpus" wicri:corpus="PMC">002264</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">Living with HIV postdiagnosis: a qualitative study of the experiences of Nairobi slum residents</title><author><name sortKey="Wekesa, Eliud" sort="Wekesa, Eliud" uniqKey="Wekesa E" first="Eliud" last="Wekesa">Eliud Wekesa</name><affiliation><nlm:aff id="af1"><institution>London School of Economics—Social Policy</institution>,<addr-line>London</addr-line>,<country>UK</country></nlm:aff></affiliation></author><author><name sortKey="Coast, Ernestina" sort="Coast, Ernestina" uniqKey="Coast E" first="Ernestina" last="Coast">Ernestina Coast</name><affiliation><nlm:aff id="af2"><institution>Population Council</institution>,<addr-line>Reproductive Health Program, Nairobi</addr-line>,<country>Kenya</country></nlm:aff></affiliation></author></analytic><series><title level="j">BMJ Open</title><idno type="eISSN">2044-6055</idno><imprint><date when="2013">2013</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><sec><title>Objectives</title><p>To characterise the experiences of heterosexual men and women living with HIV postdiagnosis and explain these experiences in relation to their identity and sexuality.</p></sec><sec><title>Design</title><p>Qualitative study using in-depth interviews and a theoretically informed biographic disruption theory.</p></sec><sec><title>Setting</title><p>Interviews were conducted in two Nairobi slums (Kenya).</p></sec><sec><title>Participants</title><p>41 HIV-infected heterosexual men and women aged 18 years or older.</p></sec><sec><title>Results</title><p>People living with HIV have divergent experiences surrounding HIV diagnosis. Postdiagnosis, there are multiple phases of identity transition, including status (non-)disclosure, and attempts at identity repair and normalcy. For some people, this process involves a transition to a new self-identity, incorporating both HIV and antiretroviral treatment (ART) into their lives. For others, it involves a partial transition, with some aspects of their prediagnosis identity persisting, and for others it involves a rejection of HIV identity. Those people who were able to incorporate HIV/AIDS in their identity, without it being disruptive to their biography, were pursuing safer sexual and reproductive lives. By contrast, those people with a more continuous biography continued to reflect their prediagnosis identity and sexual behaviour.</p></sec><sec><title>Conclusions</title><p>People living with HIV/AIDS (PLWHA) had to rework their sense of identity following diagnosis in the context of living in a slum setting. Men and women living with HIV in slums are poorly supported by health systems and services as they attempt to cope with a diagnosis of HIV. 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<front><journal-meta><journal-id journal-id-type="nlm-ta">BMJ Open</journal-id><journal-id journal-id-type="iso-abbrev">BMJ Open</journal-id><journal-id journal-id-type="hwp">bmjopen</journal-id><journal-id journal-id-type="publisher-id">bmjopen</journal-id><journal-title-group><journal-title>BMJ Open</journal-title></journal-title-group><issn pub-type="epub">2044-6055</issn><publisher><publisher-name>BMJ Publishing Group</publisher-name><publisher-loc>BMA House, Tavistock Square, London, WC1H 9JR</publisher-loc></publisher></journal-meta><article-meta><article-id pub-id-type="pmid">23645922</article-id><article-id pub-id-type="pmc">3646186</article-id><article-id pub-id-type="publisher-id">bmjopen-2012-002399</article-id><article-id pub-id-type="doi">10.1136/bmjopen-2012-002399</article-id><article-categories><subj-group subj-group-type="heading"><subject>HIV/AIDS</subject><subj-group><subject>Research</subject></subj-group></subj-group><subj-group subj-group-type="hwp-journal-coll"><subject>1506</subject><subject>1842</subject><subject>1725</subject></subj-group></article-categories><title-group><article-title>Living with HIV postdiagnosis: a qualitative study of the experiences of Nairobi slum residents</article-title><alt-title alt-title-type="short">Living with HIV postdiagnosis: a qualitative study from Nairobi slums</alt-title></title-group><contrib-group><contrib contrib-type="author"><name><surname>Wekesa</surname><given-names>Eliud</given-names></name><xref ref-type="aff" rid="af1">1</xref></contrib><contrib contrib-type="author"><name><surname>Coast</surname><given-names>Ernestina</given-names></name><xref ref-type="aff" rid="af2">2</xref></contrib></contrib-group><aff id="af1"><label>1</label><institution>London School of Economics—Social Policy</institution>,<addr-line>London</addr-line>,<country>UK</country></aff><aff id="af2"><label>2</label><institution>Population Council</institution>,<addr-line>Reproductive Health Program, Nairobi</addr-line>,<country>Kenya</country></aff><author-notes><corresp><label>Correspondence to</label> Dr Eliud Wekesa; <email>ewekesa@popcouncil.org</email></corresp></author-notes><pub-date pub-type="collection"><year>2013</year></pub-date><pub-date pub-type="epub"><day>3</day><month>5</month><year>2013</year></pub-date><volume>3</volume><issue>5</issue><elocation-id>e002399</elocation-id><history><date date-type="received"><day>23</day><month>11</month><year>2012</year></date><date date-type="rev-recd"><day>18</day><month>2</month><year>2013</year></date><date date-type="accepted"><day>25</day><month>3</month><year>2013</year></date></history><permissions><copyright-statement>Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions</copyright-statement><copyright-year>2013</copyright-year><license license-type="open-access"><license-p>This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: <ext-link ext-link-type="uri" xlink:href="http://creativecommons.org/licenses/by-nc/3.0/">http://creativecommons.org/licenses/by-nc/3.0/</ext-link> and <ext-link ext-link-type="uri" xlink:href="http://creativecommons.org/licenses/by-nc/3.0/legalcode">http://creativecommons.org/licenses/by-nc/3.0/legalcode</ext-link></license-p></license></permissions><self-uri xlink:title="pdf" xlink:type="simple" xlink:href="bmjopen-2012-002399.pdf"></self-uri><self-uri content-type="draft-revisions-pdf" xlink:type="simple" xlink:href="bmjopen-2012-002399.draft_revisions.pdf"></self-uri><self-uri content-type="reviewers-comments-pdf" xlink:type="simple" xlink:href="bmjopen-2012-002399.reviewer_comments.pdf"></self-uri><abstract><sec><title>Objectives</title><p>To characterise the experiences of heterosexual men and women living with HIV postdiagnosis and explain these experiences in relation to their identity and sexuality.</p></sec><sec><title>Design</title><p>Qualitative study using in-depth interviews and a theoretically informed biographic disruption theory.</p></sec><sec><title>Setting</title><p>Interviews were conducted in two Nairobi slums (Kenya).</p></sec><sec><title>Participants</title><p>41 HIV-infected heterosexual men and women aged 18 years or older.</p></sec><sec><title>Results</title><p>People living with HIV have divergent experiences surrounding HIV diagnosis. Postdiagnosis, there are multiple phases of identity transition, including status (non-)disclosure, and attempts at identity repair and normalcy. For some people, this process involves a transition to a new self-identity, incorporating both HIV and antiretroviral treatment (ART) into their lives. For others, it involves a partial transition, with some aspects of their prediagnosis identity persisting, and for others it involves a rejection of HIV identity. Those people who were able to incorporate HIV/AIDS in their identity, without it being disruptive to their biography, were pursuing safer sexual and reproductive lives. By contrast, those people with a more continuous biography continued to reflect their prediagnosis identity and sexual behaviour.</p></sec><sec><title>Conclusions</title><p>People living with HIV/AIDS (PLWHA) had to rework their sense of identity following diagnosis in the context of living in a slum setting. Men and women living with HIV in slums are poorly supported by health systems and services as they attempt to cope with a diagnosis of HIV. Given the availability of ART, health services and professionals need to support the rights of PLWHA to be sexually active if they want to and achieve their fertility goals, while minimising HIV transmission risk.</p></sec></abstract><kwd-group><kwd>Qualitative Research</kwd></kwd-group></article-meta></front><body><boxed-text position="float"><caption><title>Article summary</title></caption><sec><title>Article focus</title><list list-type="bullet"><list-item><p>Slum populations are under-researched, and very little empirical research examines the experiences of people living with HIV postdiagnosis.</p></list-item><list-item><p>Impact of HIV postdiagnosis identity on sexual behaviour.</p></list-item></list></sec><sec><title>Key messages</title><list list-type="bullet"><list-item><p>Men and women living with HIV in slums are poorly served by health services postdiagnosis.</p></list-item><list-item><p>Health service provision and support does not incorporate the increasing needs of people living with HIV and AIDS to navigate their sexual and reproductive lives.</p></list-item><list-item><p>The sexual behaviours of PLWHA are influenced by their HIV postdiagnosis identity transformation.</p></list-item></list></sec><sec><title>Strengths and limitations of this study</title><list list-type="bullet"><list-item><p>The first in-depth study of the experiences of people living in slums following an HIV diagnosis in relation to their identity and sexuality.</p></list-item><list-item><p>We did not include the perspectives of relevant stakeholders such as partners or policymakers.</p></list-item></list></sec></boxed-text><sec id="s1"><title>Introduction</title><p>Sub-Saharan Africa (SSA) is the region most affected by the HIV/AIDS pandemic, accounting for over 68% of the total global burden.<xref ref-type="bibr" rid="R1">1</xref> A total of 1.6 million Kenyans are currently living with HIV and Kenyan adult HIV prevalence is estimated to be at 6.2%, higher than that of the SSA region (4.9%).<xref ref-type="bibr" rid="R2">2</xref></p><p>The introduction of antiretroviral therapy (ART) has improved the prognosis of HIV, with the potential to transform it into a chronic condition. Access to ART in low and middle income countries has expanded rapidly, with 6.6 million people now receiving treatment, nearly half of those eligible for treatment.<xref ref-type="bibr" rid="R1">1</xref> Seventy-two per cent of Kenyan adults and children with advanced HIV infection receive ARV.<xref ref-type="bibr" rid="R3">3</xref> With ART, the future life opportunities of PLWHA can change, including those related to sexuality and reproduction.<xref ref-type="bibr" rid="R4 R5 R6">4–6</xref> However, research has focused on issues of access and adherence to ART for treatment effectiveness.<xref ref-type="bibr" rid="R7 R8 R9">7–9</xref> Recently, evidence about the relationships between stigma and ARV availability and uptake has emerged from low-income settings.<xref ref-type="bibr" rid="R10">10</xref> At the individual level, ARV adherence is negatively affected by stigma from partners,<xref ref-type="bibr" rid="R11 R12 R13">11–13</xref> although self-stigma has been shown to decline in contexts of increasing access to treatment,<xref ref-type="bibr" rid="R14">14</xref> and stigma changes over the life course.<xref ref-type="bibr" rid="R15">15</xref> While the provision of ARV has the potential to reduce stigma about HIV/AIDS<xref ref-type="bibr" rid="R16">16</xref> in a wide range of low-income contexts,<xref ref-type="bibr" rid="R17 R18 R19">17–19</xref> this relationship is not universal.<xref ref-type="bibr" rid="R20">20</xref> The relationship between ART and status disclosure to partner(s), family and community is also poorly understood, with the majority of evidence coming from high-income settings.<xref ref-type="bibr" rid="R21">21</xref> Research from SSA suggests a distinctive pattern of disclosure that relies on third parties and intermediaries, especially religious leaders, as instruments of disclosure.<xref ref-type="bibr" rid="R22">22</xref> The sexual health rights and needs of PLWHA remain under-researched and poorly understood,<xref ref-type="bibr" rid="R5">5</xref><xref ref-type="bibr" rid="R23">23</xref><xref ref-type="bibr" rid="R24">24</xref> even though issues of stigma and disclosure are likely to be closely related to sexual behaviour postdiagnosis. There are policy concerns about treatment optimism, with an increase in riskier sexual behaviour as more people become aware that HIV/AIDS is a manageable condition with ART.<xref ref-type="bibr" rid="R25 R26 R27 R28">25–28</xref> Sexuality is a crucial element of being human and sexual health (pleasurable and safe sex) is an important component of overall health.<xref ref-type="bibr" rid="R29">29</xref></p><p>Nearly three-quarters (72%) of urban residents in SSA live in slums<xref ref-type="bibr" rid="R30">30</xref> where single-room homes are densely packed.<xref ref-type="bibr" rid="R31">31</xref> The poor health status of slum residents reflects on the poor environmental conditions and infrastructure, limited access to treatment and preventive health services as well as relying on poor quality and informal and regulated health services.<xref ref-type="bibr" rid="R32">32</xref> Urban slums and their residents are an important, but under-researched, aspect of life in SSA. We undertook a qualitative study of the sexual and reproductive experiences and intentions of heterosexual men and women living with HIV in Nairobi slums.</p></sec><sec sec-type="methods" id="s2"><title>Methods</title><sec id="s2a"><title>Theoretical framework</title><p>We organised and analysed our data using the theoretical concept of biographical disruption,<xref ref-type="bibr" rid="R33">33</xref> to understand how HIV acts as a disruptive experience on an individual's life, social relations and identity.<xref ref-type="bibr" rid="R34 R35 R36">34–36</xref> There are three components to biographic disruption—disruption of an individual's former behaviour or assumptions; changes in an individual's perceptions of self and an attempt to repair or change one's biography. Biographical disruption of HIV has been studied in the global North, and the extent to which it applies to PLWHA in other settings is much less well understood.<xref ref-type="bibr" rid="R35">35</xref><xref ref-type="bibr" rid="R37">37</xref><xref ref-type="bibr" rid="R38">38</xref> Prior to the widespread availability of ART, evidence of the ways in which identity formation was affected by a HIV diagnosis focused on the mortality implications,<xref ref-type="bibr" rid="R35">35</xref> stigma<xref ref-type="bibr" rid="R39">39</xref> and any subsequent disclosure.<xref ref-type="bibr" rid="R34">34</xref> Earlier analyses tended to be based on quantitative questions in surveys<xref ref-type="bibr" rid="R34">34</xref> with limited analytic insights. Recent analyses have incorporated evidence from qualitative and mixed methods studies and highlight the ways in which identity postdiagnosis has been used as a social and political force to improve treatment access.<xref ref-type="bibr" rid="R40">40</xref> Research in Zambia, conducted pre-ART and post-ART roll-out, suggests that while ART makes disclosure easier, it also changes the context in which an individual discloses.<xref ref-type="bibr" rid="R41">41</xref> Research into sexual behaviour post-HIV diagnosis in SSA has tended to focus on quantitative measures of sexual behaviour (number of partners, frequency of sex, concurrency, condom (non-)use<xref ref-type="bibr" rid="R42">42</xref> with much of the research coming from South Africa, with some exceptions.<xref ref-type="bibr" rid="R43">43</xref><xref ref-type="bibr" rid="R44">44</xref></p></sec><sec id="s2b"><title>Study context</title><p>Data for this study were collected from two slum communities (Korogocho and Viwandani) in Nairobi, Kenya. Housing conditions in these slums are temporary, typically single rooms constructed from mud, iron sheets, cardboard boxes and polythene.<xref ref-type="bibr" rid="R31">31</xref> The settings are characterised by overcrowding, insecurity, poor sanitary conditions, poverty, high unemployment levels, poor amenities and infrastructure, limited access to preventative and curative services and reliance on poor quality, usually informal and unregulated health services.<xref ref-type="bibr" rid="R32">32</xref><xref ref-type="bibr" rid="R45">45</xref> These conditions contribute to poor health outcomes for slum residents relative to other subpopulations in Kenya, including higher levels of mortality and morbidity, HIV prevalence, risky sexual behaviours, unmet need for contraception and unintended pregnancies.<xref ref-type="bibr" rid="R46 R47 R48 R49">46–49</xref></p></sec><sec id="s2c"><title>Sampling and recruitment</title><p>We analyse qualitative data collected as part of a larger mixed methods study of PLWHA (18 years and above) conducted in 2010. The study adopted a sequential design, with quantitative survey interviews (n=513) followed by in-depth interviews with a subsample (n=41) drawn from the survey. The quantitative sample size was determined on the basis of sample size calculations.<xref ref-type="bibr" rid="R50">50</xref> Respondents were recruited from the Nairobi Urban Demographic and Health Surveillance System through quota sampling on the basis of seroprevalence ratios and sociodemographic characteristics in the study sites.<xref ref-type="bibr" rid="R49">49</xref> Purposive selection of respondents for the qualitative interview was based on analyses of the survey data, and identification of a range of experiences. Key informant interviews (n=14) were conducted with health providers. Eight research assistants (RA) (four per site) were recruited for the quantitative survey, of which two per site were retained for the qualitative in-depth interviews. All RA had several years’ experience of data collection in the study sites, were trained HIV/AIDS counsellors, and one RA was a PLWHA. Interviews were conducted in Kiswahili and the qualitative interviews were recorded, transcribed verbatim, translated into English and analysed using NVivo.<xref ref-type="bibr" rid="R51">51</xref></p></sec><sec id="s2d"><title>Ethical considerations</title><p>We obtained written consent from all respondents and all interviews were conducted in a setting of the respondent's choice. Privacy in home settings in slums is difficult to achieve, and respondents were given the option of being interviewed in the offices of a local health organisation. A small grocery package was provided as compensation for each respondent. Approval for the study was granted by the Kenyan Medical Research Institute and the London School of Economics. Our analyses use pseudonyms for the presentation of data.</p></sec></sec><sec sec-type="results" id="s3"><title>Results</title><p>The sociodemographic characteristics of the qualitative study participants are summarised in <xref ref-type="table" rid="BMJOPEN2012002399TB1">table 1</xref>.</p><table-wrap id="BMJOPEN2012002399TB1" position="float"><label>Table 1</label><caption><p>Sociodemographic characteristics of respondents (n=41), 2010</p></caption><table frame="hsides" rules="groups"><colgroup span="1"><col align="left" span="1"></col><col align="char" char="." span="1"></col></colgroup><thead valign="bottom"><tr><th align="left" rowspan="1" colspan="1">Characteristic</th><th align="left" rowspan="1" colspan="1">Per cent (n=41)</th></tr></thead><tbody><tr><td colspan="2" rowspan="1">Slum of residence</td></tr><tr><td rowspan="1" colspan="1"> Korogocho</td><td rowspan="1" colspan="1">59</td></tr><tr><td rowspan="1" colspan="1"> Viwandani</td><td rowspan="1" colspan="1">41</td></tr><tr><td colspan="2" rowspan="1">Sex</td></tr><tr><td rowspan="1" colspan="1"> Female</td><td rowspan="1" colspan="1">56</td></tr><tr><td rowspan="1" colspan="1"> Male</td><td rowspan="1" colspan="1">44</td></tr><tr><td colspan="2" rowspan="1">Ethnicity</td></tr><tr><td rowspan="1" colspan="1"> Kikuyu</td><td rowspan="1" colspan="1">34</td></tr><tr><td rowspan="1" colspan="1"> Luo</td><td rowspan="1" colspan="1">24</td></tr><tr><td rowspan="1" colspan="1"> Luyia</td><td rowspan="1" colspan="1">20</td></tr><tr><td rowspan="1" colspan="1"> Kamba</td><td rowspan="1" colspan="1">15</td></tr><tr><td rowspan="1" colspan="1"> Other</td><td rowspan="1" colspan="1">7</td></tr><tr><td colspan="2" rowspan="1">Education</td></tr><tr><td rowspan="1" colspan="1"> No schooling</td><td rowspan="1" colspan="1">7</td></tr><tr><td rowspan="1" colspan="1"> Primary</td><td rowspan="1" colspan="1">66</td></tr><tr><td rowspan="1" colspan="1"> Secondary and higher</td><td rowspan="1" colspan="1">27</td></tr><tr><td colspan="2" rowspan="1">Marital status</td></tr><tr><td rowspan="1" colspan="1"> Married/cohabiting</td><td rowspan="1" colspan="1">41</td></tr><tr><td rowspan="1" colspan="1"> Divorced/separated</td><td rowspan="1" colspan="1">17</td></tr><tr><td rowspan="1" colspan="1"> Widowed</td><td rowspan="1" colspan="1">29</td></tr><tr><td rowspan="1" colspan="1"> Never married</td><td rowspan="1" colspan="1">12</td></tr><tr><td colspan="2" rowspan="1">Age</td></tr><tr><td rowspan="1" colspan="1"> 18–29</td><td rowspan="1" colspan="1">22</td></tr><tr><td rowspan="1" colspan="1"> 30–39</td><td rowspan="1" colspan="1">32</td></tr><tr><td rowspan="1" colspan="1"> 40–49</td><td rowspan="1" colspan="1">32</td></tr><tr><td rowspan="1" colspan="1"> 50+</td><td rowspan="1" colspan="1">15</td></tr><tr><td colspan="2" rowspan="1">Treatment status</td></tr><tr><td rowspan="1" colspan="1"> Receiving ART</td><td rowspan="1" colspan="1">56</td></tr><tr><td rowspan="1" colspan="1"> Not receiving ART</td><td rowspan="1" colspan="1">44</td></tr></tbody></table><table-wrap-foot><fn><p>ART, antiretroviral treatment.</p></fn></table-wrap-foot></table-wrap><p>We present detailed analyses of three typical case studies, purposively selected from the qualitative sample in order to draw out the complexities of biographical disruption following diagnosis with HIV.</p><p>By selecting three case studies, we contribute to a deeper understanding of the ways in which individual trajectories unfold postdiagnosis, acknowledging the complexity of biographical disruption. We selected these case studies to represent a range of sexual behaviour reported by the wider qualitative subsample (<xref ref-type="table" rid="BMJOPEN2012002399TB2">table 2</xref>).<xref ref-type="bibr" rid="R52">52</xref></p><table-wrap id="BMJOPEN2012002399TB2" position="float"><label>Table 2</label><caption><p>Summary characteristics of three case study respondents</p></caption><table frame="hsides" rules="groups"><colgroup span="1"><col align="left" span="1"></col><col align="left" span="1"></col></colgroup><thead valign="bottom"><tr><th align="left" rowspan="1" colspan="1">Characteristics</th><th align="left" rowspan="1" colspan="1">Case study</th></tr></thead><tbody><tr><td rowspan="1" colspan="1">Sexually abstinent</td><td rowspan="1" colspan="1">Malaika, female, 29 years, widowed, known HIV status for 3 years. After her husband's death in 2003, she was briefly ‘inherited’ by her brother-in-law. This is a traditional practice involving a widow becoming the de facto sexual partner of her dead husband's brother</td></tr><tr><td rowspan="1" colspan="1">Sexually active, monogamous relationship, consistent use of condoms and/or contraception</td><td rowspan="1" colspan="1">Safari, female, 34 years, currently cohabiting, known HIV status for 15 years</td></tr><tr><td rowspan="1" colspan="1">Sexually active, multiple partners, inconsistent use of condoms and/or contraception</td><td rowspan="1" colspan="1">Jambo, male, 55 years, widower, known HIV status for 9 years</td></tr></tbody></table></table-wrap><sec id="s3a"><title>Reactions to a diagnosis of HIV</title><p>HIV diagnosis is the first step in incorporating HIV/AIDS into an individual's identity, challenging their identity as a healthy person. Most research on HIV testing in SSA focuses on its benefits, costs and barriers,<xref ref-type="bibr" rid="R53">53</xref><xref ref-type="bibr" rid="R54">54</xref> with little understanding of people's experiences of having a test.<xref ref-type="bibr" rid="R55">55</xref> Safari's narrative is typical of a health provider's response and management early in the epidemic<disp-quote><p>INT: So how did you know your status?</p></disp-quote><disp-quote><p>Safari: I kept going to <italic>Hospital</italic>. That is when I heard doctors saying things like HIV/AIDS and they started pointing fingers at me. Those days things were so bad; not like these days…He told me; you know, there is a disease that has come out. It does not have a cure. It is not known what kind of disease it is, and Safari, you have that disease.</p></disp-quote></p><p>Diagnosis often occurred during a health crisis<disp-quote><p>Jambo: I had a chest problem and when I went to hospital they told me that I had to be tested for HIV. I knew I had TB, but when I was tested for HIV…Oh no! aaayaai! I was surprised to be told that I was HIV+.</p></disp-quote></p><p>Being diagnosed with HIV/AIDS elicits multiple reactions, both negative (eg, shock) and positive (eg, relief).<xref ref-type="bibr" rid="R34">34</xref><xref ref-type="bibr" rid="R56">56</xref> People struggled to grapple with the meaning of a positive test and its implication for their life. Their biographies were initially disrupted and needed reworking to accommodate HIV/AIDS. These initial emotions evolved and changed with time. Malaika's reaction was of distress and denial<disp-quote><p>Malaika: I was very angry. I wished I was not alive because I saw myself as a dead person. I thought about killing myself. I wanted to kill my children but it was just that they were still very young. I did not suspect I was HIV positive because I did not go out with other men.</p></disp-quote></p><p>Safari feared being associated with prostitutes, a marginalised and stigmatised group<disp-quote><p>Safari: I will be put with the people who are cursed in life. A person called a prostitute is a cursed person. People would think that I came to Nairobi to be a prostitute. I hated myself. I took it as a curse.</p></disp-quote></p><p>Jambo's narrative involved putting on a brave face, a reaction that is rarely reported in studies of diagnosis reactions.<xref ref-type="bibr" rid="R34">34</xref><xref ref-type="bibr" rid="R57">57</xref> Jambo displayed a ‘masculinity script’<xref ref-type="bibr" rid="R58">58</xref> by reporting himself to be brave, fearless and emotionless upon testing HIV positive<disp-quote><p>Jambo: I wasn't angry because I am a man. You are only scared if you are not a man.</p></disp-quote></p><p>Diagnosis represented a first step in HIV identity formation, followed by decisions about whether to disclose their status.</p></sec><sec id="s3b"><title>HIV status disclosure: to tell or not to tell</title><p>Managing the flow of information about HIV status, including (non-)disclosure of HIV status is central to how people manage their identity postdiagnosis. Decisions to disclose evolve over time, encompassing a process beginning with non-disclosure and sometimes ending in forced disclosure<disp-quote><p>Safari: My mother was told but not by me. When you live with people in the house they will know something and they will start talking and word goes round. After all, my body betrayed me.</p></disp-quote></p><p>Safari's disclosure was articulated as subsequently driven by a desire to educate and inform others about HIV/AIDS, a disclosure motive that has also been documented in the USA<xref ref-type="bibr" rid="R59">59</xref><disp-quote><p>Int: Why did you tell other relatives then?</p></disp-quote><disp-quote><p>Safari: …So I wanted to educate them more about HIV/AIDS. How you can get it and how to take care of it and how you can live with it.</p></disp-quote></p><p>Neither Malaika nor Jambo had disclosed their status to anyone beyond healthcare providers. A major barrier to their disclosure was fear of stigma and discrimination<disp-quote><p>Malaika: It is very difficult for me to disclose my status because people will start talking ill about me, they will not feel good when their children play together with my children and they will look down upon me. That is why I don't want to disclose it to any one and just want it to be my secret.</p></disp-quote></p><p>Jambo's explanation of his non-disclosure refers instead to issues of confidentiality<disp-quote><p>Jambo: How can I reveal matters affecting my body to anyone; that I have HIV? Why? Are they my doctor? Why should they know?</p></disp-quote></p><p>Key informant interviews reported similar negative social responses experienced by PLWHA<disp-quote><p>Nurse: I can remember a client…a man who came to me… he had been tested and we were just sharing with him. He told me when he went home and shared his HIV status with the wife, the wife packed and left.</p></disp-quote></p><p>Incorporation of HIV into people's identity is shaped by both individual reaction and the reaction of others and is a process of transition involving decisions about (non-)disclosure.</p></sec><sec id="s3c"><title>Assimilation and resources for identity normalisation</title><p>The third phase involves reorganisation and/or reconstruction of biographies towards some kind of normality, possibly different to that preceding HIV diagnosis, and requires resources for support and encouragement.<xref ref-type="bibr" rid="R60">60</xref> The two main resources identified in our data include social capital and ART. Three major sources of social capital were identified as HIV support groups, government healthcare services and faith-based organisations. HIV support groups can provide confidential spaces where experiences and issues about HIV such as disclosure, sexuality and adherence are shared<disp-quote><p>Safari: We visit support groups where we learn a lot together. From there you just feel you belong to the society. You just feel you are [like HIV] ‘negative’ and not ‘positive’. We are taught so many things about living positively with the disease.</p></disp-quote></p><p>Of our three in-depth case studies, only Safari had fully disclosed her status; she had assimilated her HIV status into her life and it had become central to her identity. For this group of people, social support groups played an integral role in creating and maintaining an HIV-positive identity, forming a biosociality to decipher biomedical information (eg, CD4 cell counts, viral loads and treatment side-effects), over and above individual clinic consultations. Safari developed her identity as a new ‘career’,<xref ref-type="bibr" rid="R61">61</xref> and formed a support group to provide social support for PLWHA and income generation activities (eg, selling beads and poultry farming)<disp-quote><p>Safari: I used to hate myself before, but now I am a very informed person living positively with HIV. I disclosed to many people and they began calling me <italic>mama ukimwi</italic> (mother AIDS), but I didn't mind. I have educated myself from newspapers and the television. I have a very big dream of changing the community. I chair a support group and have a dream of educating the community about HIV/AIDS. I overcame stigma and want to help other PLWHA.</p></disp-quote></p><p>Second, social capital from health workers is accessed postdiagnosis by PLWHA, regardless of their disclosure status. Community health workers are often the only sources of social capital for PLWHA who have not disclosed their status. PLWHA were assigned community healthcare workers (CHWs) who operate in the PLWHA's residential area, and are meant to meet at least once per week<disp-quote><p>Clinical Officer: They [CHWs] are the ones who deal mostly with these clients. They support them in the community so they can cope with the HIV situation. They are the ones helping us to do community outreaches, door to door training, door to door campaign on TB and HIV.</p></disp-quote></p><p>However, evidence from respondents suggested that this regular contact was rarely maintained, in part because community health workers often had multiple jobs in order to maximise their own incomes.</p><p>Third, faith-based social networks also play a role in helping people to shape their new identities, including the management of anxiety and depression<xref ref-type="bibr" rid="R62">62</xref><disp-quote><p>Safari: Because I am not taking ART I know one day, God will heal me by faith. It has been 15 years since I knew my status but I have not taken any of these drugs.</p></disp-quote></p><p>Prayer and religiosity played a pivotal role in some PLWHA's lives, providing an essential source of spiritual support. Evidence from the UK suggests that religion can help to manage anxiety and depression postdiagnosis.<xref ref-type="bibr" rid="R62">62</xref></p><p>ART can strengthen social relationships and selfidentity because it improves people's capacity to work, important for social and economic viability and validation, allowing people to play their societal role as a breadwinner, parent or adult. For many PLWHA, hope and uncertainty coexist, leading to contrasting and ambivalent views about ART, even among those individuals who have developed a positive identity<disp-quote><p>Safari: I should have started using the [ART] drugs, but I said no. The doctor was pushing me to start the drugs, but I refused.</p></disp-quote><disp-quote><p>Int: Why did you refuse?</p></disp-quote><disp-quote><p>Safari: Let me tell you, I fear those drugs. The thing that makes me fear them is the reactions they cause. I have seen the problems they cause to people. The swelling of the feet, then there is one that removes all the fat from the body and it brings to one side. You find one's breast has grown fat; you have a bad shape. That is why I fear them.</p></disp-quote></p><p>For many PLWHA, being HIV-positive is simply a medical label and not a defining feature of their identity<disp-quote><p>Int: So life goes on as usual?</p></disp-quote><disp-quote><p>Jambo: Yes … people might say that I have HIV, but for me that is not important…My main problem is that I have no means to earn a living, I have many challenges. I am usually rained on in this house whenever it rains, but I cannot [afford to] migrate from here.</p></disp-quote></p><p>For those PLWHA who experienced a dissonance between their HIV status and their perceived health status, this tended to lead to the rejection of an HIV identity<disp-quote><p>Malaika: That thing [HIV diagnosis] is very painful that I even don't want to think about it. I don't even want be going to the NGOs to read those things about HIV/AIDS because I know I have it. I just want to stay ‘<italic>bubu</italic> [dumb] style’.</p></disp-quote></p><p>Malaika had decided not to use ART because she had concerns about the requirement for good nutrition in order to be able to take the drugs<disp-quote><p>Int: Are you on ART?</p></disp-quote><disp-quote><p>Malaika: I am not on any treatment, I just stay like that…I don't see the need to use these drugs when I don't feel any pain in my body. In fact, I hear you need to eat well when you take those drugs and sometimes you don't have the means to buy food.</p></disp-quote></p><p>Lack of food as an issue in non-adherence to ART was highlighted by healthcare providers<disp-quote><p>Clinical Officer: We have experienced some clients who complain that they cannot take the drugs as instructed due to lack of food since the drugs are quite strong.</p></disp-quote></p><p>Our case studies illustrate the range of experiences around people's identities post-HIV diagnosis. Safari, with full disclosure, had started to make a career out of her HIV status, although she preferred to place her faith in religion, rather than ART, to maintain her health. Safari had completely assimilated a new HIV identity. Jambo, on the other hand, was motivated to adhere to ART in order that he would be able to work, but he had not disclosed his status to anyone outside the healthcare system. Jambo sought to maintain his biographic continuity, not allowing his identity to be affected by HIV diagnosis. For Malaika, an HIV diagnosis meant a biographical disruption, with neither incorporation of a new identity postdiagnosis nor adaptation of her identity. We explore how these different responses are associated with sexual behaviours.</p><p>Malaika's biographical disruption has implications for her sexual life<disp-quote><p>Malaika: No, I have not had sex since I knew about my status. I lost sexual desire completely. I don't even long for a man… I actually hate them [men]. You know when a woman loses feeling? I don't have [sexual] feeling at all.</p></disp-quote></p><p>Those PLWHA who were able to incorporate HIV/AIDS in their identity without it being disruptive to their biography were pursuing sexual lives. At the time of her interview, Safari was sexually active with a steady partner and reported consistent condom use<disp-quote><p>Safari: The man I am with, the first thing is, I am the person who will put the condom on for him. I do not want him to do it himself. Even if it is at night the lights have to be on, because a man is just a man, he might cut the condom and add me more viruses.</p></disp-quote></p><p>By contrast, Jambo's more continuous biography reflected his prediagnosis identity<disp-quote><p>INT: Did you use a condom during your last sex?</p></disp-quote><disp-quote><p>Jambo: Aaahi! How can I have sex with a woman while using a condom? Am I to fuck the condom or her vagina…so my blood gets into her?! Then I go and throw away my semen in the toilet, why? I don't want it, if it's a question of condoms, I would rather do away with a vagina because it will not benefit me in any way.</p></disp-quote></p><p>From Jambo's perspective, the need for sexual gratification involving sexual fluid exchange outweighs condom use.<xref ref-type="bibr" rid="R63">63</xref></p></sec></sec><sec sec-type="discussion" id="s4"><title>Discussion</title><p>There are multiple complex responses to diagnosis with HIV, in an era of ART availability, set against a backdrop of life in a Nairobi slum. For some people, this process involves a transition to a new self-identity, incorporating both HIV and ART into their lives<xref ref-type="bibr" rid="R60">60</xref>; for others, it involves a partial transition, with some aspects of identity persisting, and others redefined.<xref ref-type="bibr" rid="R35">35</xref><xref ref-type="bibr" rid="R37">37</xref><xref ref-type="bibr" rid="R64">64</xref> Multiple phases of identity transition, including diagnosis, (non-)disclosure, positive living and attempts at repair and normalcy, play out in people's narratives and their sexual lives and futures.</p><p>PLWHA try to mobilise resources to help them deal with the diagnosis,<xref ref-type="bibr" rid="R35">35</xref><xref ref-type="bibr" rid="R36">36</xref> including sources of social capital (eg, community health workers social groups, faith-based organisations) and ART. Such social networks provide support to mitigate psychological distress associated with an HIV diagnosis.<xref ref-type="bibr" rid="R65">65</xref> Studies from elsewhere in SSA have documented a positive relationship between social capital and health<xref ref-type="bibr" rid="R66">66</xref> and prayer/spirituality and quality of life among PLWHA.<xref ref-type="bibr" rid="R67">67</xref> Emerging evidence also shows that the availability of social networks such as treatment partners, healthcare workers and social support groups facilitates retention in care and adherence to ART,<xref ref-type="bibr" rid="R38">38</xref><xref ref-type="bibr" rid="R66">66</xref><xref ref-type="bibr" rid="R68">68</xref> both associated with improved treatment outcomes.</p><p>The use of ART was a significant resource enabling PLWHA to regain positions as economically and socially productive and reproductive members of society, thereby fending off stigma.<xref ref-type="bibr" rid="R69">69</xref><xref ref-type="bibr" rid="R70">70</xref> PLWHA face stigma in part because infection with HIV is associated with moral failures and a breach of social norms and taboos<xref ref-type="bibr" rid="R39">39</xref> In the context of the high premium placed on parenthood,<xref ref-type="bibr" rid="R71">71</xref> HIV posed a potential threat to peoples’ identities as mothers and fathers. Resuming sex provides an opportunity for PLWHA to lead normal lives as well as to mitigate stigma and social disproval.<xref ref-type="bibr" rid="R72">72</xref> However, the inherent social rewards of childbearing, in the context of poverty and limited access to social security, and its inherent risk of transmitting the virus are complex issues in reproductive decisions among PLWHA.</p><p>Sampling participants from the slum community is a major strength of our study. Most studies on PLWHA sample from HIV health services where participants are likely to have better access to services and to have been better informed about SRH services and HIV prevention than the general population of PLWHA. However, our interviews had a heterosexual and consensual sex focus and it is highly unlikely that respondents would volunteer same-sex or forced sex activities. Since these sexual identities and activities are stigmatised in Kenya, a different approach might have helped the research process, although their under-reporting might still persist. Information on sexual behaviour and fertility preferences were entirely based on self-reports using face-to-face interviews. Given the sensitive nature of these topics, there is likely to have been social desirability bias. Both men and women misreport their sexual behaviour<xref ref-type="bibr" rid="R73">73</xref> and respondents might be inclined to under-report their unsafe sexual behaviour. Although we took precautions to limit social desirability bias—such as training interviewers to create a climate of trust that allows free talk about such matters and using non-clinical community interviewers—its effect cannot be completely eliminated.</p><p>In spite of these limitations, this study contributes to the empirical literature on sexual and reproductive health of PLWHA in a poor setting, an under-researched topic. PLWHA experience life with HIV and face challenges around stigma, managing ART, negotiating sexual intimacy and reproduction. Our data show the need to address living with HIV/AIDS infection holistically, asking broad questions about the lived experience of PLWHA, paying attention to structural elements of poverty, gender and sociocultural norms, recognising PLWHA as sexual and reproductive human beings. Research in developing countries that have addressed the sexual behaviour of PLWHA has focused on risky behaviour mostly using quantitative data from surveys.<xref ref-type="bibr" rid="R74">74</xref> Studies have considered the reproductive goals of PLWHA,<xref ref-type="bibr" rid="R75">75</xref><xref ref-type="bibr" rid="R76">76</xref> suggesting that the sexual and reproductive behaviour of PLWHA should be understood by connecting sexuality to gender, reproductive goals and larger socioeconomic contexts.<xref ref-type="bibr" rid="R77">77</xref><xref ref-type="bibr" rid="R78">78</xref></p><p>The effect of ART on sexual and reproductive behaviour is attracting research and policy attention following ART rollout in resource-poor settings. The findings of the few studies that have examined how treatment affects sexual and reproductive behaviour in such settings have produced mixed results, highlighting the need for a better evidence base.<xref ref-type="bibr" rid="R25">25</xref><xref ref-type="bibr" rid="R79">79</xref><xref ref-type="bibr" rid="R80">80</xref> There is a growing recognition of the need to support the rights of PLWHA to be sexually active, should they wish to be, while minimising HIV transmission risk,<xref ref-type="bibr" rid="R81">81</xref> and this study is an effort in that direction. Meeting the sexual and reproductive health needs of PLWHA means more than just counselling on risk reduction. Psychosocial factors play a prominent role in sexual functioning, and diminished sexual interest and sexual abstinence are strongly associated with psychological distress, depression, anxiety and low quality of life, in addition to underlying ill-health represented by CD4 cell counts and duration or severity of illness.<xref ref-type="bibr" rid="R82">82</xref> PLWHA could benefit from counselling around sexuality as a whole, not just risk reduction as is usually the case. Our findings speak to the need for interventions to help PLWHA to safely become sexually active if they want to. Because the process of incorporating HIV into an individual's identity is neither linear nor predictable, diagnosis presents an opportunity for healthcare providers to discuss these issues. Subsequent referrals for mental health services might, for example, become necessary depending on how individuals cope with their diagnosis</p></sec><sec sec-type="supplementary-material"><title>Supplementary Material</title><supplementary-material id="d35e144" content-type="local-data"><caption><title>Author's manuscript</title></caption><media mimetype="application" mime-subtype="pdf" xlink:href="bmjopen-2012-002399.draft_revisions.pdf"></media></supplementary-material><supplementary-material id="d35e145" content-type="local-data"><caption><title>Reviewer comments</title></caption><media mimetype="application" mime-subtype="pdf" xlink:href="bmjopen-2012-002399.reviewer_comments.pdf"></media></supplementary-material></sec></body><back><ack><p>We are grateful to the participants of the study for their time and contributions. We are grateful to the African Population and Health Research Centre for permission to sample from the Nairobi Urban Demographic Surveillance System.</p></ack><fn-group><fn><p><bold>Contributors:</bold> EW and EC have provided administrative, technical or material support to the project, contributed to the study concept and design and performed the analysis and interpretation of the data. EW conducted the acquisition of the data as well as the drafting and critical revision of the manuscript. Both authors have read and approved the final manuscript.</p></fn><fn><p><bold>Funding:</bold> This work was supported by the Wellcome Trust grant number [078471/Z/05/A].</p></fn><fn><p><bold>Competing interests:</bold> None.</p></fn><fn><p><bold>Ethics approval:</bold> Kenyan Medical Research Institute (KEMRI) & London School of Economics.</p></fn><fn><p><bold>Provenance and peer review:</bold> Not commissioned; externally peer reviewed.</p></fn><fn><p><bold>Data sharing statement:</bold> No additional data are available.</p></fn></fn-group><ref-list><title>References</title><ref id="R1"><label>1</label><mixed-citation publication-type="book"><collab>UNAIDS</collab><source>Global HIV/AIDS response: epidemic update and health sector progress towards Universal Access Progress Report 2011</source>. <publisher-loc>Geneva, Switzerland</publisher-loc>: <publisher-name>World Health Organization/United Nations United Nations Joint Programme on AIDS</publisher-name>, <year>2011</year></mixed-citation></ref><ref id="R2"><label>2</label><mixed-citation publication-type="book"><collab>UNAIDS</collab><source>UNAIDS report on the global AIDS epidemic</source>. <publisher-loc>Geneva</publisher-loc>: <publisher-name>UNAIDS</publisher-name>, <year>2012</year>:<fpage>212</fpage></mixed-citation></ref><ref id="R3"><label>3</label><mixed-citation publication-type="book"><collab>NACC/NASCOP</collab><source>Kenya AIDS epidemic update</source>. <publisher-loc>Nairobi</publisher-loc>: <publisher-name>National AIDS and STI control programme</publisher-name>, <year>2011</year>:<fpage>144</fpage></mixed-citation></ref><ref id="R4"><label>4</label><mixed-citation publication-type="journal"><person-group person-group-type="author"><name><surname>Birungi</surname><given-names>H</given-names></name><name><surname>Undie</surname><given-names>CC</given-names></name><name><surname>Aggleton</surname><given-names>P</given-names></name></person-group><article-title>Recent research on sexuality in East Africa</article-title>. <source>Cult Health Sex</source><year>2009</year>;<volume>11</volume>:<fpage>747</fpage>–<lpage>50</lpage><pub-id pub-id-type="pmid">20183550</pub-id></mixed-citation></ref><ref id="R5"><label>5</label><mixed-citation publication-type="journal"><person-group person-group-type="author"><name><surname>Segurado</surname><given-names>AC</given-names></name><name><surname>Paiva</surname><given-names>V</given-names></name></person-group><article-title>Rights of HIV positive people to sexual and reproductive health: parenthood</article-title>. <source>Reprod Health Matters</source><year>2007</year>;<volume>15</volume>(<issue>29, Suppl 1</issue>):<fpage>27</fpage>–<lpage>45</lpage><pub-id pub-id-type="pmid">17531747</pub-id></mixed-citation></ref><ref id="R6"><label>6</label><mixed-citation publication-type="book"><collab>WHO</collab><source>Sexual and reproductive health of women living with HIV/AIDS: guidelines on care, treatment and support for women living with HIV/AIDS and their children in resource-constrained settings</source>. <publisher-loc>Geneva</publisher-loc>: <publisher-name>World Health Organization</publisher-name>, <year>2006</year></mixed-citation></ref><ref id="R7"><label>7</label><mixed-citation publication-type="journal"><person-group person-group-type="author"><name><surname>Bartlett</surname><given-names>JA</given-names></name></person-group><article-title>Addressing the challenges of adherence</article-title>. <source>J Acquir Immune Defic Syndr</source><year>2002</year>;<volume>29</volume>:<fpage>S2</fpage>–<lpage>10</lpage><pub-id pub-id-type="pmid">11832696</pub-id></mixed-citation></ref><ref id="R8"><label>8</label><mixed-citation publication-type="book"><person-group person-group-type="author"><name><surname>Hardon</surname><given-names>A</given-names></name><name><surname>Hodgkin</surname><given-names>C</given-names></name><name><surname>Laing</surname><given-names>R</given-names></name></person-group><source>From access to adherence: the challenges of antiretroviral treatment. 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