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Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=caic20 Download by: [Imperial College London Library] Date: 17 May 2016, At: 08:37 AIDS Care Psychological and Socio-medical Aspects of AIDS/HIV ISSN: 0954-0121 (Print) 1360-0451 (Online) Journal homepage: http://www.tandfonline.com/loi/caic20 Complex routes into HIV care for migrant workers: a qualitative study from north India Tanvi Rai, Helen S. Lambert & Helen Ward To cite this article: Tanvi Rai, Helen S. Lambert & Helen Ward (2015) Complex routes into HIV care for migrant workers: a qualitative study from north India, AIDS Care, 27:11, 1418-1423, DOI: 10.1080/09540121.2015.1114988 To link to this article: http://dx.doi.org/10.1080/09540121.2015.1114988 © 2015 The Author(s). Published by Taylor & Francis Published online: 26 Nov 2015. Submit your article to this journal Article views: 118 View related articles View Crossmark data Citing articles: 1 View citing articles

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Full Terms amp Conditions of access and use can be found athttpwwwtandfonlinecomactionjournalInformationjournalCode=caic20

Download by [Imperial College London Library] Date 17 May 2016 At 0837

AIDS CarePsychological and Socio-medical Aspects of AIDSHIV

ISSN 0954-0121 (Print) 1360-0451 (Online) Journal homepage httpwwwtandfonlinecomloicaic20

Complex routes into HIV care for migrant workersa qualitative study from north India

Tanvi Rai Helen S Lambert amp Helen Ward

To cite this article Tanvi Rai Helen S Lambert amp Helen Ward (2015) Complex routes into HIVcare for migrant workers a qualitative study from north India AIDS Care 2711 1418-1423DOI 1010800954012120151114988

To link to this article httpdxdoiorg1010800954012120151114988

copy 2015 The Author(s) Published by Taylor ampFrancis

Published online 26 Nov 2015

Submit your article to this journal

Article views 118

View related articles

View Crossmark data

Citing articles 1 View citing articles

Complex routes into HIV care for migrant workers a qualitative study from northIndiaTanvi Raia Helen S Lambertb and Helen Warda

aSchool of Public Health Imperial College London London UK bSchool of Social and Community Medicine University of Bristol Bristol UK

ABSTRACTMigrant workers are designated a bridge population in the spread of HIV and therefore if infectedshould be diagnosed and treated early This study examined pathways to HIV diagnosis andaccess to care for rural-to-urban circular migrant workers and partners of migrants in northernIndia identifying structural social and individual level factors that shaped their journeys into careWe conducted a qualitative study using in-depth interviews with HIV-positive men (n = 20) andwomen (n = 13) with a history of circular migration recruited from an antiretroviral therapy centrein one district of Uttar Pradesh north India Migrants and partners of migrants faced a complexseries of obstacles to accessing HIV testing and care Employment insecurity lack of entitlementto sick pay or subsidised healthcare at destination and the householdrsquos economic reliance on theirmigration-based livelihood led many men to continue working until they became incapacitatedby HIV-related morbidity During periods of deteriorating health they often exhausted theirsavings on private treatments focused on symptom management and sought HIV testing andtreatment at a public hospital only following a medical or financial emergency Wives of migrantshad generally been diagnosed following their husbandsrsquo diagnosis or death with access to testingand treatment mediated via family members For some a delay in disclosure of husbandrsquos HIVstatus led to delays in their own testing Diagnosing and treating HIV infection early is importantin slowing down the spread of the epidemic and targeting those at greatest risk should be apriority However despite targeted campaigns circumstances associated with migration mayprevent migrant workers and their partners from accessing testing and treatment until theybecome sick The insecurity of migrant work the dominance of private healthcare and genderdifferences in health-seeking behaviour delay early diagnosis and treatment initiation

ARTICLE HISTORYReceived 12 January 2015Accepted 20 October 2015

KEYWORDSTransients and migrants HIVinfectionsprevention ampcontrol India qualitativeresearch care pathways

Introduction

Recent advances in biomedical prevention suggest thatearly initiation of antiretroviral therapy (ART) couldstall the HIV epidemic the first step is to reduce the pro-portion of people who are undiagnosed (World HealthOrganisation 2013) In India despite universal free testingand treatment only 10ndash20 of people living with HIV arediagnosed (Steinbrook 2007) together with poor linkageinto care this results in late presentation at ART centres(Sarna Bachani Sebastian Sogarwal amp Battala 2010)

Migrants have been considered at risk of acquiringHIV infection due to the social disruption of migration(Decosas Kane Anarfi Sodji amp Wagner 1995) and asbridging populations linking asynchronous epidemics(Coffee Lurie amp Garnett 2007) Migration and mobilityare shaping many of the Asian epidemics (UNAIDS2008) for example in western Nepal associated withmigration toMumbai (Nepal 2007) and inChina associ-ated with rural-to-urban labourmigration (Zhang ChowJahn Kraemer amp Wilson 2013)

In India rural-to-urban migration is rising (Abbas ampVarma 2014) with conservative estimates of around 40million involved in circular migration (Srivastava 2011)In north India long-distance circular out-migration ofmen is widespread if married the manrsquos wife usuallyremains at her marital home to look after children andelders At destination men live in shared rooms andvisit their villages once or twice a year (Srivastava2005) HIV ldquohot spotsrdquo are appearing within previouslylow-prevalence states which also report high out-migration and are believed to result from this circulationof migrant workers between low-prevalence rural andhigh-prevalence urban areas leading to nationwideawareness programmes targeting migrant families(NACO 2010 2014a)

As part of a larger mixed-methods study of HIV andmigration in northern India (Rai et al 2014 RaiLambert amp Ward in press) we use a social ecologicalapproach (Poundstone Strathdee amp Celentano 2004Sweat amp Denison 1995) to report results from the

copy 2015 The Author(s) Published by Taylor amp FrancisThis is an Open Access article distributed under the terms of the Creative Commons Attribution License (httpcreativecommonsorglicensesby40) which permits unrestricted usedistribution and reproduction in any medium provided the original work is properly cited

CONTACT Tanvi Rai tanvirai07imperialacuk

AIDS CARE 2015VOL 27 NO 11 1418ndash1423httpdxdoiorg1010800954012120151114988

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qualitative study identifying how a multi-level set of fac-tors combine in shaping journeys into care for migrantfamilies with HIV

Methods

With 200 million people Uttar Pradesh is the mostpopulous state in the country with the highest levels ofnet out-migration (Census 2012) It is a low-prevalencestate but includes five high-prevalence districts1 (NACO2014b) including our study district Allahabad

Fieldwork was carried at the district-level ART centrein Allahabad over a period of six months in 2010ndash2011The first author conducted face-to-face interviews inHindi with 33 HIV-positive patients with a history of cir-cular labour migration themselves or via their spouseStudy participants were sampled to achieve maximumvariation in terms of age gender duration since HIVdiagnosis and whether or not they were on ART Thetopic guide included open-ended questions about theirexperience of migration pathways to HIV diagnosisand life with HIV

Interviews were translated and transcribed intoEnglish managed using NVIVO v9 and analysed usingFramework (Ritchie amp Lewis 2003) and thematic con-tent analysis (Green amp Thorogood 2009) Ethical clear-ance was obtained from the Imperial College ResearchEthics Committee and the local Institutional EthicsReview Board in Allahabad Informed consent wasobtained from all interviewees

Results

Twenty men and 13 women aged 24ndash45 were inter-viewed including two couples The men reported pastor on-going migrant work in factories transportationconstruction running small stalls or similar work Inkeeping with local migration patterns the women werewives or widows of migrant men rather than migrantworkers themselves Four men and five women hadbeen diagnosed in the last six months and the majority(24) were on ART

No participant had actively sought HIV testing manyhad been aware of ldquoAIDSrdquo but without concern aboutpersonal risk We identified three pathways to HIV test-ing and diagnosis presented in Table 1 The two domi-nant pathways broadly coinciding with the experiencesof male and female respondents are illustrated inFigure 1(a) and 1(b) and detailed below

Menrsquos journeys of discovery

Men often worked 10ndash16-hour shifts on informal con-tracts paid by the hour or piece produced and generally

not entitled to sick pay Many talked of experiencingrecurrent fever diarrhoea and weight loss for monthsor years prior to their HIV diagnosis They respondedby visiting private practitioners who offered them symp-tomatic relief quickly at low cost

ldquohellip somebody who is a worker he will try to get betterfor less money hersquoll try to get better for that 50 rupeeshellip So thatrsquos whyhellip everybody goes there [cheap localpractice]helliprdquo (ID 28)

Several respondents described being diagnosed andtreated for several conditions

ldquoI had a fever constantly for a month month and a halfSomeone said Irsquod got typhoid somebody else said Irsquod gotmalariahelliprdquo (ID 22)

Figure 1 Routes to HIV diagnosis for migrant men and wives ofmigrant men (a) Dominant pathway to testing for migrant men(b) Dominant pathway to testing for wives of migrant men

Table 1 The three pathways to HIV testing and diagnosisbullIn response to prolonged illness and no benefit from various treatmentsusually obtained from private practitioners largest group (n = 19) mostlymenbullFollowing advice from relatives or friends after a spouse was diagnosed HIV-positive second largest group (n = 11) mostly womenbullThrough routine provider-initiated screening prior to a medicalsurgicalprocedure (n = 2) or pre-emigration screening for when seeking work abroad(n = 1)

AIDS CARE 1419

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While some private practitioners treated patients forother conditions not testing for HIV until later on othersapparently tested for HIV but did not disclose it straight-away Some told patients they had HIV but not about thefree ART available at public hospitals so patients contin-ued to seek treatment at their own expense It was unclearwhether any of these treatments were ART

ldquoBut then I became sickerhellip then some tests were doneat a private clinic (hellip ) it turned out to be HIV (hellip )But when those medicines were so expensive I stoppedtaking them (hellip ) Again I became very illrdquo (ID 25)

Eventually when migrant men were too debilitated towork they returned home Some continued seekingtreatments from local doctors and healers Only whentheir health collapsed or the money ran out completelyfamily members took them to public hospitals wherethey were diagnosed and referred to the ART centre

ldquoI was getting this fever Irsquod just take some medicine(hellip ) completely sickened I moved back home I gotsome treatment there in the local nursing home (hellip )When I was on my last legs they took me to [district hos-pital] (hellip ) it turned out to be HIV and treatmentstarted over therehelliprdquo (ID 6)

Finally more than half of the menrsquos wives were HIV-positive and two menrsquos wives remained untested ndashthese men concerned about the social implications ofhaving HIV had chosen to remain quiet

Womenrsquos journeys of discovery

Women in this study had accessed the ART centre viatheir husbands or other male family members Thedominant family form in rural Uttar Pradesh is the patri-archal and patrilineal family where womenrsquos lives arerestricted to normatively defined ldquofemalerdquo domainsthat lie within the household Their exposure to infor-mation and movement outside the home is strictly man-aged by male andor older relatives (Jeffery amp Jeffery1997) In this study the low status of women in the mar-ital household kept them unaware of their personal riskof HIV and they did not receive testing or treatment untilfacilitated by male relatives Their migrant husbandsbeing absent or sick (or dying) from HIV-related illnesscontributed to the delay

All but one2 of the women interviewed had been diag-nosed following the death or diagnosis of their husbandsThehusbands ofwidowshad either failed to tell theirwivesabout theirHIV and had subsequently died or in one casethe woman found out just before her husbandrsquos death

ldquohellipwhen he was in a bad state then I was called toBombay So I went there (hellip ) when I saw the reporthe had ithellipAnd then they got me tested toordquo (ID 16)

Widows with HIV found themselves in a situation wherethere they had scant understanding of their conditionand minimal emotional and financial support fromtheir marital families For many like the men eventualcontact with the ART centre was precipitated by a medi-cal or financial emergency

ldquoMy whole body was swollen I went yellow I couldnrsquotwalk my body hurt (hellip ) I first went to the governmentclinic (hellip ) then I went to a private clinic When I didnrsquotget any relief they sent me here [ART centre]rdquo (ID 8)

Delayed disclosure was also reported by women whosehusbands were alive Migrating for work may have facili-tated hiding their diagnosis but even when men weresick at home other family members sometimes preventedtheir wives from accessing medical reports A minority ofwomen with living husbands had been more fortunatetheir husbandsrsquo HIV discovery was followed quickly bytheir own HIV test when access to the ART centre hadalready been secured via their husbands

Discussion

Despite targeted migrant awareness campaigns and freeHIV testing and treatment people in this study weremostly unable to access these services until faced withsome kind of medical or financial crisis intimately linkedto their status as migrants or migrantsrsquo wives Delays inHIV testing postponed access to ART and prolongedthe period during which they could transmit HIV toothers in their sexual networks (Rai et al 2014)

Figure 2 represents our theoretical framework forunderstanding migrant familiesrsquo convoluted pathwaysinto care

Structural factors The precarious nature of migrantwork with its long shifts informal employment contractsand lack of sick pay (Deshingkar amp Akter 2009Faetanini amp Tankha 2013) created significant opportu-nity costs of seeking medical care leading men towardsquick inexpensive symptom-management solutionsThe dominance of private health care is partly attributedto its reputation as more efficient convenient and confi-dential than public sector services (Bhat 1999 SheikhPorter Kielmann amp Rangan 2006) However the medi-cal mismanagement respondents faced whereby theywere treated for many other conditions before HIVwas diagnosed echoes previous research where privatepractitioners were frequently found not following cur-rent HIV guidelines (Chomat et al 2009 Datye et al2006 Kielmann et al 2005)

Social factors This study supports previous researchthat marriage is the main risk factor for HIV (Ganga-khedkar et al 1997 Saggurti amp Malviya 2009) and

1420 T RAI ET AL

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that aside from antenatal HIV screening marriedwomen are usually tested following their husbandrsquosHIV diagnosis (Joseph et al 2010 Malave RamakrishnaHeylen Bharat amp Ekstrand 2013) Being a migrantrsquoswife influenced both their risk of becoming HIV-infectedand subsequent pathways into care Womenrsquos low statusin the marital home made worse by absent husbandskept them ignorant of their HIV risk and delayed accessto care when unwell Similar to other studies on partnernotification (Chandra Deepthivarma amp Manjula 2003Taraphdar Dasgupta amp Saha 2007) stigma about hav-ing a socially disgraceful disease such as HIV contributedto some menrsquos hesitation in telling their wives

Individual-level factors Fever diarrhoea and weightloss are the usual manifestations of conditions such astyphoid malaria tuberculosis and dengue ndash all highlyprevalent illnesses in India especially for migrant workersliving andworking in congested unhygienic places such asurban slums and factories (Borhade 2011 Chatterjee2006) and therefore study respondents not making thelink to HIV is understandable Seeking quick and accessi-ble symptomatic relief for these familiar and frequentlyexperienced health conditions sometimes repeatedlyrather than going to a public hospital (where there is a

greater likelihood of being referred to HIV services) maybe especially applicable to circular migrant workers whoare in their work locations for finite periods and areoften not entitled to sick pay (Deshingkar amp Akter 2009)

Extensive awareness campaigns at source transit anddestination (NACO 2010) may reduce the delays intocare for HIV-positive migrant families but they largelyneglect many of the structural and social factors thatmake HIV-positive migrant families particularly vulner-able We could only sample those who were accessingART services but the treacherous journeys of theselsquoluckyrsquo individuals give some suggestion of the plight ofthose not yet on the ART register

Notes

1 Areas with an estimated antenatal HIV prevalence of gt12 The remaining woman was diagnosed following illness

after her marriage dissolved

Acknowledgements

We are grateful to Dr Kavita S Agarwal for arranging intro-ductions with local contacts at the HIV clinics and for

Figure 2 The structural social and individual factors delaying HIV diagnosis and access to care for HIV-positive migrant workers andtheir partners

AIDS CARE 1421

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facilitating in the fieldwork Thanks also to Professor PeterPiot for providing feedback on previous drafts of thismanuscript

Disclosure statement

No potential conflict of interest was reported by the authors

Funding

This work was supported by a Medical Research Council ndashDoctoral Training Award (grant code G24038) studentshipheld by TR during her PhD and a Wellcome Trust grant(grant code 090285Z09Z) held by HW

References

Abbas R ampVarmaD (2014) Internal labormigration in Indiaraises integration challenges for migrants Migrationinformation source Retrieved from Migration PolicyInstitute website httpwwwmigrationpolicyorgarticleinternal-labor-migration-india-raises-integration-challenges-migrants

Bhat R (1999) Characteristics of private medical practice inIndia A provider perspective Health Policy Plan 14(1)26ndash37

Borhade A (2011) Migrantsrsquo (denied) access to health care inIndia Paper presented at the UNESCOUNICEF nationalworkshop on Internal Migration and Human Developmentin India New Delhi

Census (2012) Census India dashboard Retrieved October2012 from httpcensusindiagovin2011censuscensusinfodashboardindexhtml

Chandra P S Deepthivarma S amp Manjula V (2003)Disclosure of HIV infection in South India Patternsreasons and reactions AIDS Care 15(2) 207ndash215 doi1010800954012031000068353

Chatterjee C B (2006) Identities in motion Migration andhealth in India Mumbai The Centre for Enquiry intoHealth and Allied Themes (CEHAT)

Chomat A M Wilson I B Wanke C A Selvakumar AJohn K R amp Isaac R (2009) Knowledge beliefs andhealth care practices relating to treatment of HIV inVellore India AIDS Patient Care STDS 23(6) 477ndash484doi101089apc20080222

Coffee M Lurie M N amp Garnett G P (2007) Modelling theimpact of migration on the HIV epidemic in South AfricaAIDS 21(3) 343ndash350 doi101097QAD0b013e328011dac9 [doi] 00002030ndash200701300ndash00008 [pii]

Datye V Kielmann K Sheikh K Deshmukh DDeshpande S Porter J amp Rangan S (2006) Private prac-titionersrsquo communications with patients around HIV testingin Pune India Health Policy Plan 21(5) 343ndash352 doi101093heapolczl021

Decosas J Kane F Anarfi J K Sodji K D ampWagner H U(1995) Migration and AIDS Lancet 346(8978) 826ndash828

Deshingkar P amp Akter S (2009) Migration and humandevelopment in India (Human Development ResearchPaper 200913) United Nations DevelopmentProgramme Retrieved from httphdrundporgsitesdefaultfileshdrp_2009_13pdf

Faetanini M amp Tankha R (2013) Social inclusion of internalmigrants in India New Delhi UNESCO Retrieved fromhttpunesdocunescoorgimages0022002237223702epdf

Gangakhedkar R R Bentley M E Divekar A D GadkariD Mehendale S M Shepherd M E Quinn T C (1997)Spread of HIV infection in married monogamous women inIndia JAMA 278(23) 2090ndash2092

Green J amp Thorogood N (2009) Qualitative methods forhealth research (2nd ed) London Sage

Jeffery R amp Jeffery P (1997)Womenrsquos agency and fertility InR Jeffery amp P Jeffery (Eds) Population gender and politicsDemographic change in rural North India (pp 117ndash164)Cambridge Cambridge University Press

Joseph S Kielmann K Kudale A Sheikh K Shinde SPorter J amp Rangan S (2010) Examining sex differentialsin the uptake and process of HIV testing in three highprevalence districts of India AIDS Care 22(3) 286ndash295doi10108009540120903193674

Kielmann K Deshmukh D Deshpande S Datye VPorter J amp Rangan S (2005) Managing uncertaintyaround HIVAIDS in an urban setting Private medical pro-viders and their patients in Pune India Social Science ampMedicine 61(7) 1540ndash1550 doi101016jsocscimed200502008

Malave S Ramakrishna J Heylen E Bharat S amp EkstrandM L (2013) Differences in testing stigma and perceivedconsequences of stigmatization among heterosexual menand women living with HIV in Bengaluru India AIDSCare doi101080095401212013819409

NACO (2010) Policy strategy and operational plan ndash HIVinterventions for migrants New Delhi Ministry of Healthand Family Welfare Government of India

NACO (2014a) Annual report 2013ndash2014 New DelhiNational AIDS Control Organisation Ministry of Healthand Family Welfare Government of India Retrievedfrom httpwwwnacogovinupload201420mslnsNACO_English202013ndash14pdf

NACO (2014b) State fact sheets 2013ndash2014 New DelhiNational AIDS Control Organisation Ministry of Healthand Family Welfare Government of India Retrieved fromhttpwwwnacogovinupload201420mslnsState20Fact20Sheet202013ndash14pdf

Nepal B (2007) Population mobility and spread of HIVacross the Indo-Nepal border Journal of HealthPopulation and Nutrition 25(3) 267ndash277

Poundstone K E Strathdee S A amp Celentano D D (2004)The social epidemiology of human immunodeficiency virusacquired immunodeficiency syndrome EpidemiologicReviews 26 22ndash35 doi101093epirevmxh005

Rai T Lambert H S Borquez A B Saggurti N MahapatraB amp Ward H (2014) Circular labor migration and HIV inIndia Exploring heterogeneity in bridge populations con-necting areas of high and low HIV infection prevalenceJournal of Infectious Diseases 210(Suppl 2) S556ndashS561doi101093infdisjiu432

Rai T Lambert H S amp Ward H (in press) Migration as arisk and a livelihood strategy HIV across the life course ofmigrant families in India Global Public Health

Ritchie J amp Lewis J (2003) Qualitative research practice Aguide for social science students and researchers LondonSage

1422 T RAI ET AL

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Saggurti N amp Malviya A (2009) HIV transmission in inti-mate partner relations in India New Delhi UNAIDS

Sarna A Bachani D Sebastian M Sogarwal R amp BattalaM (2010) Factors affecting enrolment of PLHIV into ARTservices in India Delhi Population Council

Sheikh K Porter J Kielmann K amp Rangan S (2006) Publicndashprivate partnerships for equity of access to care for tuberculosisandHIVAIDS Lessons from Pune India Transactions of theRoyal Society of Tropical Medicine and Hygiene 100(4) 312ndash320 doi101016jtrstmh200504023

Srivastava R S (2011) Labour migration in India Recenttrends patterns and policy issues The Indian Journal ofLabour Economics 54(3) 411ndash440

Srivastava R S (2005) Country paper India internalmigration links with poverty and development Paper pre-sented at the Regional Conference on Migration andDevelopment in Asia Lanzhou China

Steinbrook R (2007) HIV in India ndash A complex epidemicNew England Journal of Medicine 356(11) 1089ndash1093doi101056NEJMp078009

Sweat M D amp Denison J A (1995) Reducing HIV inci-dence in developing countries with structural andenvironmental interventions AIDS 9(Suppl A) S251ndashS257

Taraphdar P Dasgupta A amp Saha B (2007) Disclosureamong people living with HIVAIDS Indian Journal ofCommunity Medicine 32(4) 280ndash282

UNAIDS (2008) Redefining AIDS in Asia Crafting and effec-tive response Report of the Commission on AIDS in IndiaDelhi Commission on AIDS in Asia

World Health Organisation (2013) Consolidated guidelines onthe use of antiretroviral drugs for treating and preventingHIV infection Recommendations for a public healthapproach Retrieved from httpwwwwhointhivpubguidelinesarv2013downloaden

Zhang L Chow E P Jahn H J Kraemer A amp Wilson DP (2013) High HIV prevalence and risk of infection amongrural-to-urban migrants in various migration stages inChina A systematic review and meta-analysis (1537ndash4521(Electronic))

AIDS CARE 1423

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  • Abstract
  • Introduction
  • Methods
  • Results
    • Mens journeys of discovery
    • Womens journeys of discovery
      • Discussion
      • Notes
      • Acknowledgements
      • Disclosure statement
      • References

Complex routes into HIV care for migrant workers a qualitative study from northIndiaTanvi Raia Helen S Lambertb and Helen Warda

aSchool of Public Health Imperial College London London UK bSchool of Social and Community Medicine University of Bristol Bristol UK

ABSTRACTMigrant workers are designated a bridge population in the spread of HIV and therefore if infectedshould be diagnosed and treated early This study examined pathways to HIV diagnosis andaccess to care for rural-to-urban circular migrant workers and partners of migrants in northernIndia identifying structural social and individual level factors that shaped their journeys into careWe conducted a qualitative study using in-depth interviews with HIV-positive men (n = 20) andwomen (n = 13) with a history of circular migration recruited from an antiretroviral therapy centrein one district of Uttar Pradesh north India Migrants and partners of migrants faced a complexseries of obstacles to accessing HIV testing and care Employment insecurity lack of entitlementto sick pay or subsidised healthcare at destination and the householdrsquos economic reliance on theirmigration-based livelihood led many men to continue working until they became incapacitatedby HIV-related morbidity During periods of deteriorating health they often exhausted theirsavings on private treatments focused on symptom management and sought HIV testing andtreatment at a public hospital only following a medical or financial emergency Wives of migrantshad generally been diagnosed following their husbandsrsquo diagnosis or death with access to testingand treatment mediated via family members For some a delay in disclosure of husbandrsquos HIVstatus led to delays in their own testing Diagnosing and treating HIV infection early is importantin slowing down the spread of the epidemic and targeting those at greatest risk should be apriority However despite targeted campaigns circumstances associated with migration mayprevent migrant workers and their partners from accessing testing and treatment until theybecome sick The insecurity of migrant work the dominance of private healthcare and genderdifferences in health-seeking behaviour delay early diagnosis and treatment initiation

ARTICLE HISTORYReceived 12 January 2015Accepted 20 October 2015

KEYWORDSTransients and migrants HIVinfectionsprevention ampcontrol India qualitativeresearch care pathways

Introduction

Recent advances in biomedical prevention suggest thatearly initiation of antiretroviral therapy (ART) couldstall the HIV epidemic the first step is to reduce the pro-portion of people who are undiagnosed (World HealthOrganisation 2013) In India despite universal free testingand treatment only 10ndash20 of people living with HIV arediagnosed (Steinbrook 2007) together with poor linkageinto care this results in late presentation at ART centres(Sarna Bachani Sebastian Sogarwal amp Battala 2010)

Migrants have been considered at risk of acquiringHIV infection due to the social disruption of migration(Decosas Kane Anarfi Sodji amp Wagner 1995) and asbridging populations linking asynchronous epidemics(Coffee Lurie amp Garnett 2007) Migration and mobilityare shaping many of the Asian epidemics (UNAIDS2008) for example in western Nepal associated withmigration toMumbai (Nepal 2007) and inChina associ-ated with rural-to-urban labourmigration (Zhang ChowJahn Kraemer amp Wilson 2013)

In India rural-to-urban migration is rising (Abbas ampVarma 2014) with conservative estimates of around 40million involved in circular migration (Srivastava 2011)In north India long-distance circular out-migration ofmen is widespread if married the manrsquos wife usuallyremains at her marital home to look after children andelders At destination men live in shared rooms andvisit their villages once or twice a year (Srivastava2005) HIV ldquohot spotsrdquo are appearing within previouslylow-prevalence states which also report high out-migration and are believed to result from this circulationof migrant workers between low-prevalence rural andhigh-prevalence urban areas leading to nationwideawareness programmes targeting migrant families(NACO 2010 2014a)

As part of a larger mixed-methods study of HIV andmigration in northern India (Rai et al 2014 RaiLambert amp Ward in press) we use a social ecologicalapproach (Poundstone Strathdee amp Celentano 2004Sweat amp Denison 1995) to report results from the

copy 2015 The Author(s) Published by Taylor amp FrancisThis is an Open Access article distributed under the terms of the Creative Commons Attribution License (httpcreativecommonsorglicensesby40) which permits unrestricted usedistribution and reproduction in any medium provided the original work is properly cited

CONTACT Tanvi Rai tanvirai07imperialacuk

AIDS CARE 2015VOL 27 NO 11 1418ndash1423httpdxdoiorg1010800954012120151114988

Dow

nloa

ded

by [

Impe

rial

Col

lege

Lon

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Lib

rary

] at

08

37 1

7 M

ay 2

016

qualitative study identifying how a multi-level set of fac-tors combine in shaping journeys into care for migrantfamilies with HIV

Methods

With 200 million people Uttar Pradesh is the mostpopulous state in the country with the highest levels ofnet out-migration (Census 2012) It is a low-prevalencestate but includes five high-prevalence districts1 (NACO2014b) including our study district Allahabad

Fieldwork was carried at the district-level ART centrein Allahabad over a period of six months in 2010ndash2011The first author conducted face-to-face interviews inHindi with 33 HIV-positive patients with a history of cir-cular labour migration themselves or via their spouseStudy participants were sampled to achieve maximumvariation in terms of age gender duration since HIVdiagnosis and whether or not they were on ART Thetopic guide included open-ended questions about theirexperience of migration pathways to HIV diagnosisand life with HIV

Interviews were translated and transcribed intoEnglish managed using NVIVO v9 and analysed usingFramework (Ritchie amp Lewis 2003) and thematic con-tent analysis (Green amp Thorogood 2009) Ethical clear-ance was obtained from the Imperial College ResearchEthics Committee and the local Institutional EthicsReview Board in Allahabad Informed consent wasobtained from all interviewees

Results

Twenty men and 13 women aged 24ndash45 were inter-viewed including two couples The men reported pastor on-going migrant work in factories transportationconstruction running small stalls or similar work Inkeeping with local migration patterns the women werewives or widows of migrant men rather than migrantworkers themselves Four men and five women hadbeen diagnosed in the last six months and the majority(24) were on ART

No participant had actively sought HIV testing manyhad been aware of ldquoAIDSrdquo but without concern aboutpersonal risk We identified three pathways to HIV test-ing and diagnosis presented in Table 1 The two domi-nant pathways broadly coinciding with the experiencesof male and female respondents are illustrated inFigure 1(a) and 1(b) and detailed below

Menrsquos journeys of discovery

Men often worked 10ndash16-hour shifts on informal con-tracts paid by the hour or piece produced and generally

not entitled to sick pay Many talked of experiencingrecurrent fever diarrhoea and weight loss for monthsor years prior to their HIV diagnosis They respondedby visiting private practitioners who offered them symp-tomatic relief quickly at low cost

ldquohellip somebody who is a worker he will try to get betterfor less money hersquoll try to get better for that 50 rupeeshellip So thatrsquos whyhellip everybody goes there [cheap localpractice]helliprdquo (ID 28)

Several respondents described being diagnosed andtreated for several conditions

ldquoI had a fever constantly for a month month and a halfSomeone said Irsquod got typhoid somebody else said Irsquod gotmalariahelliprdquo (ID 22)

Figure 1 Routes to HIV diagnosis for migrant men and wives ofmigrant men (a) Dominant pathway to testing for migrant men(b) Dominant pathway to testing for wives of migrant men

Table 1 The three pathways to HIV testing and diagnosisbullIn response to prolonged illness and no benefit from various treatmentsusually obtained from private practitioners largest group (n = 19) mostlymenbullFollowing advice from relatives or friends after a spouse was diagnosed HIV-positive second largest group (n = 11) mostly womenbullThrough routine provider-initiated screening prior to a medicalsurgicalprocedure (n = 2) or pre-emigration screening for when seeking work abroad(n = 1)

AIDS CARE 1419

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While some private practitioners treated patients forother conditions not testing for HIV until later on othersapparently tested for HIV but did not disclose it straight-away Some told patients they had HIV but not about thefree ART available at public hospitals so patients contin-ued to seek treatment at their own expense It was unclearwhether any of these treatments were ART

ldquoBut then I became sickerhellip then some tests were doneat a private clinic (hellip ) it turned out to be HIV (hellip )But when those medicines were so expensive I stoppedtaking them (hellip ) Again I became very illrdquo (ID 25)

Eventually when migrant men were too debilitated towork they returned home Some continued seekingtreatments from local doctors and healers Only whentheir health collapsed or the money ran out completelyfamily members took them to public hospitals wherethey were diagnosed and referred to the ART centre

ldquoI was getting this fever Irsquod just take some medicine(hellip ) completely sickened I moved back home I gotsome treatment there in the local nursing home (hellip )When I was on my last legs they took me to [district hos-pital] (hellip ) it turned out to be HIV and treatmentstarted over therehelliprdquo (ID 6)

Finally more than half of the menrsquos wives were HIV-positive and two menrsquos wives remained untested ndashthese men concerned about the social implications ofhaving HIV had chosen to remain quiet

Womenrsquos journeys of discovery

Women in this study had accessed the ART centre viatheir husbands or other male family members Thedominant family form in rural Uttar Pradesh is the patri-archal and patrilineal family where womenrsquos lives arerestricted to normatively defined ldquofemalerdquo domainsthat lie within the household Their exposure to infor-mation and movement outside the home is strictly man-aged by male andor older relatives (Jeffery amp Jeffery1997) In this study the low status of women in the mar-ital household kept them unaware of their personal riskof HIV and they did not receive testing or treatment untilfacilitated by male relatives Their migrant husbandsbeing absent or sick (or dying) from HIV-related illnesscontributed to the delay

All but one2 of the women interviewed had been diag-nosed following the death or diagnosis of their husbandsThehusbands ofwidowshad either failed to tell theirwivesabout theirHIV and had subsequently died or in one casethe woman found out just before her husbandrsquos death

ldquohellipwhen he was in a bad state then I was called toBombay So I went there (hellip ) when I saw the reporthe had ithellipAnd then they got me tested toordquo (ID 16)

Widows with HIV found themselves in a situation wherethere they had scant understanding of their conditionand minimal emotional and financial support fromtheir marital families For many like the men eventualcontact with the ART centre was precipitated by a medi-cal or financial emergency

ldquoMy whole body was swollen I went yellow I couldnrsquotwalk my body hurt (hellip ) I first went to the governmentclinic (hellip ) then I went to a private clinic When I didnrsquotget any relief they sent me here [ART centre]rdquo (ID 8)

Delayed disclosure was also reported by women whosehusbands were alive Migrating for work may have facili-tated hiding their diagnosis but even when men weresick at home other family members sometimes preventedtheir wives from accessing medical reports A minority ofwomen with living husbands had been more fortunatetheir husbandsrsquo HIV discovery was followed quickly bytheir own HIV test when access to the ART centre hadalready been secured via their husbands

Discussion

Despite targeted migrant awareness campaigns and freeHIV testing and treatment people in this study weremostly unable to access these services until faced withsome kind of medical or financial crisis intimately linkedto their status as migrants or migrantsrsquo wives Delays inHIV testing postponed access to ART and prolongedthe period during which they could transmit HIV toothers in their sexual networks (Rai et al 2014)

Figure 2 represents our theoretical framework forunderstanding migrant familiesrsquo convoluted pathwaysinto care

Structural factors The precarious nature of migrantwork with its long shifts informal employment contractsand lack of sick pay (Deshingkar amp Akter 2009Faetanini amp Tankha 2013) created significant opportu-nity costs of seeking medical care leading men towardsquick inexpensive symptom-management solutionsThe dominance of private health care is partly attributedto its reputation as more efficient convenient and confi-dential than public sector services (Bhat 1999 SheikhPorter Kielmann amp Rangan 2006) However the medi-cal mismanagement respondents faced whereby theywere treated for many other conditions before HIVwas diagnosed echoes previous research where privatepractitioners were frequently found not following cur-rent HIV guidelines (Chomat et al 2009 Datye et al2006 Kielmann et al 2005)

Social factors This study supports previous researchthat marriage is the main risk factor for HIV (Ganga-khedkar et al 1997 Saggurti amp Malviya 2009) and

1420 T RAI ET AL

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that aside from antenatal HIV screening marriedwomen are usually tested following their husbandrsquosHIV diagnosis (Joseph et al 2010 Malave RamakrishnaHeylen Bharat amp Ekstrand 2013) Being a migrantrsquoswife influenced both their risk of becoming HIV-infectedand subsequent pathways into care Womenrsquos low statusin the marital home made worse by absent husbandskept them ignorant of their HIV risk and delayed accessto care when unwell Similar to other studies on partnernotification (Chandra Deepthivarma amp Manjula 2003Taraphdar Dasgupta amp Saha 2007) stigma about hav-ing a socially disgraceful disease such as HIV contributedto some menrsquos hesitation in telling their wives

Individual-level factors Fever diarrhoea and weightloss are the usual manifestations of conditions such astyphoid malaria tuberculosis and dengue ndash all highlyprevalent illnesses in India especially for migrant workersliving andworking in congested unhygienic places such asurban slums and factories (Borhade 2011 Chatterjee2006) and therefore study respondents not making thelink to HIV is understandable Seeking quick and accessi-ble symptomatic relief for these familiar and frequentlyexperienced health conditions sometimes repeatedlyrather than going to a public hospital (where there is a

greater likelihood of being referred to HIV services) maybe especially applicable to circular migrant workers whoare in their work locations for finite periods and areoften not entitled to sick pay (Deshingkar amp Akter 2009)

Extensive awareness campaigns at source transit anddestination (NACO 2010) may reduce the delays intocare for HIV-positive migrant families but they largelyneglect many of the structural and social factors thatmake HIV-positive migrant families particularly vulner-able We could only sample those who were accessingART services but the treacherous journeys of theselsquoluckyrsquo individuals give some suggestion of the plight ofthose not yet on the ART register

Notes

1 Areas with an estimated antenatal HIV prevalence of gt12 The remaining woman was diagnosed following illness

after her marriage dissolved

Acknowledgements

We are grateful to Dr Kavita S Agarwal for arranging intro-ductions with local contacts at the HIV clinics and for

Figure 2 The structural social and individual factors delaying HIV diagnosis and access to care for HIV-positive migrant workers andtheir partners

AIDS CARE 1421

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016

facilitating in the fieldwork Thanks also to Professor PeterPiot for providing feedback on previous drafts of thismanuscript

Disclosure statement

No potential conflict of interest was reported by the authors

Funding

This work was supported by a Medical Research Council ndashDoctoral Training Award (grant code G24038) studentshipheld by TR during her PhD and a Wellcome Trust grant(grant code 090285Z09Z) held by HW

References

Abbas R ampVarmaD (2014) Internal labormigration in Indiaraises integration challenges for migrants Migrationinformation source Retrieved from Migration PolicyInstitute website httpwwwmigrationpolicyorgarticleinternal-labor-migration-india-raises-integration-challenges-migrants

Bhat R (1999) Characteristics of private medical practice inIndia A provider perspective Health Policy Plan 14(1)26ndash37

Borhade A (2011) Migrantsrsquo (denied) access to health care inIndia Paper presented at the UNESCOUNICEF nationalworkshop on Internal Migration and Human Developmentin India New Delhi

Census (2012) Census India dashboard Retrieved October2012 from httpcensusindiagovin2011censuscensusinfodashboardindexhtml

Chandra P S Deepthivarma S amp Manjula V (2003)Disclosure of HIV infection in South India Patternsreasons and reactions AIDS Care 15(2) 207ndash215 doi1010800954012031000068353

Chatterjee C B (2006) Identities in motion Migration andhealth in India Mumbai The Centre for Enquiry intoHealth and Allied Themes (CEHAT)

Chomat A M Wilson I B Wanke C A Selvakumar AJohn K R amp Isaac R (2009) Knowledge beliefs andhealth care practices relating to treatment of HIV inVellore India AIDS Patient Care STDS 23(6) 477ndash484doi101089apc20080222

Coffee M Lurie M N amp Garnett G P (2007) Modelling theimpact of migration on the HIV epidemic in South AfricaAIDS 21(3) 343ndash350 doi101097QAD0b013e328011dac9 [doi] 00002030ndash200701300ndash00008 [pii]

Datye V Kielmann K Sheikh K Deshmukh DDeshpande S Porter J amp Rangan S (2006) Private prac-titionersrsquo communications with patients around HIV testingin Pune India Health Policy Plan 21(5) 343ndash352 doi101093heapolczl021

Decosas J Kane F Anarfi J K Sodji K D ampWagner H U(1995) Migration and AIDS Lancet 346(8978) 826ndash828

Deshingkar P amp Akter S (2009) Migration and humandevelopment in India (Human Development ResearchPaper 200913) United Nations DevelopmentProgramme Retrieved from httphdrundporgsitesdefaultfileshdrp_2009_13pdf

Faetanini M amp Tankha R (2013) Social inclusion of internalmigrants in India New Delhi UNESCO Retrieved fromhttpunesdocunescoorgimages0022002237223702epdf

Gangakhedkar R R Bentley M E Divekar A D GadkariD Mehendale S M Shepherd M E Quinn T C (1997)Spread of HIV infection in married monogamous women inIndia JAMA 278(23) 2090ndash2092

Green J amp Thorogood N (2009) Qualitative methods forhealth research (2nd ed) London Sage

Jeffery R amp Jeffery P (1997)Womenrsquos agency and fertility InR Jeffery amp P Jeffery (Eds) Population gender and politicsDemographic change in rural North India (pp 117ndash164)Cambridge Cambridge University Press

Joseph S Kielmann K Kudale A Sheikh K Shinde SPorter J amp Rangan S (2010) Examining sex differentialsin the uptake and process of HIV testing in three highprevalence districts of India AIDS Care 22(3) 286ndash295doi10108009540120903193674

Kielmann K Deshmukh D Deshpande S Datye VPorter J amp Rangan S (2005) Managing uncertaintyaround HIVAIDS in an urban setting Private medical pro-viders and their patients in Pune India Social Science ampMedicine 61(7) 1540ndash1550 doi101016jsocscimed200502008

Malave S Ramakrishna J Heylen E Bharat S amp EkstrandM L (2013) Differences in testing stigma and perceivedconsequences of stigmatization among heterosexual menand women living with HIV in Bengaluru India AIDSCare doi101080095401212013819409

NACO (2010) Policy strategy and operational plan ndash HIVinterventions for migrants New Delhi Ministry of Healthand Family Welfare Government of India

NACO (2014a) Annual report 2013ndash2014 New DelhiNational AIDS Control Organisation Ministry of Healthand Family Welfare Government of India Retrievedfrom httpwwwnacogovinupload201420mslnsNACO_English202013ndash14pdf

NACO (2014b) State fact sheets 2013ndash2014 New DelhiNational AIDS Control Organisation Ministry of Healthand Family Welfare Government of India Retrieved fromhttpwwwnacogovinupload201420mslnsState20Fact20Sheet202013ndash14pdf

Nepal B (2007) Population mobility and spread of HIVacross the Indo-Nepal border Journal of HealthPopulation and Nutrition 25(3) 267ndash277

Poundstone K E Strathdee S A amp Celentano D D (2004)The social epidemiology of human immunodeficiency virusacquired immunodeficiency syndrome EpidemiologicReviews 26 22ndash35 doi101093epirevmxh005

Rai T Lambert H S Borquez A B Saggurti N MahapatraB amp Ward H (2014) Circular labor migration and HIV inIndia Exploring heterogeneity in bridge populations con-necting areas of high and low HIV infection prevalenceJournal of Infectious Diseases 210(Suppl 2) S556ndashS561doi101093infdisjiu432

Rai T Lambert H S amp Ward H (in press) Migration as arisk and a livelihood strategy HIV across the life course ofmigrant families in India Global Public Health

Ritchie J amp Lewis J (2003) Qualitative research practice Aguide for social science students and researchers LondonSage

1422 T RAI ET AL

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lege

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] at

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ay 2

016

Saggurti N amp Malviya A (2009) HIV transmission in inti-mate partner relations in India New Delhi UNAIDS

Sarna A Bachani D Sebastian M Sogarwal R amp BattalaM (2010) Factors affecting enrolment of PLHIV into ARTservices in India Delhi Population Council

Sheikh K Porter J Kielmann K amp Rangan S (2006) Publicndashprivate partnerships for equity of access to care for tuberculosisandHIVAIDS Lessons from Pune India Transactions of theRoyal Society of Tropical Medicine and Hygiene 100(4) 312ndash320 doi101016jtrstmh200504023

Srivastava R S (2011) Labour migration in India Recenttrends patterns and policy issues The Indian Journal ofLabour Economics 54(3) 411ndash440

Srivastava R S (2005) Country paper India internalmigration links with poverty and development Paper pre-sented at the Regional Conference on Migration andDevelopment in Asia Lanzhou China

Steinbrook R (2007) HIV in India ndash A complex epidemicNew England Journal of Medicine 356(11) 1089ndash1093doi101056NEJMp078009

Sweat M D amp Denison J A (1995) Reducing HIV inci-dence in developing countries with structural andenvironmental interventions AIDS 9(Suppl A) S251ndashS257

Taraphdar P Dasgupta A amp Saha B (2007) Disclosureamong people living with HIVAIDS Indian Journal ofCommunity Medicine 32(4) 280ndash282

UNAIDS (2008) Redefining AIDS in Asia Crafting and effec-tive response Report of the Commission on AIDS in IndiaDelhi Commission on AIDS in Asia

World Health Organisation (2013) Consolidated guidelines onthe use of antiretroviral drugs for treating and preventingHIV infection Recommendations for a public healthapproach Retrieved from httpwwwwhointhivpubguidelinesarv2013downloaden

Zhang L Chow E P Jahn H J Kraemer A amp Wilson DP (2013) High HIV prevalence and risk of infection amongrural-to-urban migrants in various migration stages inChina A systematic review and meta-analysis (1537ndash4521(Electronic))

AIDS CARE 1423

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  • Abstract
  • Introduction
  • Methods
  • Results
    • Mens journeys of discovery
    • Womens journeys of discovery
      • Discussion
      • Notes
      • Acknowledgements
      • Disclosure statement
      • References

qualitative study identifying how a multi-level set of fac-tors combine in shaping journeys into care for migrantfamilies with HIV

Methods

With 200 million people Uttar Pradesh is the mostpopulous state in the country with the highest levels ofnet out-migration (Census 2012) It is a low-prevalencestate but includes five high-prevalence districts1 (NACO2014b) including our study district Allahabad

Fieldwork was carried at the district-level ART centrein Allahabad over a period of six months in 2010ndash2011The first author conducted face-to-face interviews inHindi with 33 HIV-positive patients with a history of cir-cular labour migration themselves or via their spouseStudy participants were sampled to achieve maximumvariation in terms of age gender duration since HIVdiagnosis and whether or not they were on ART Thetopic guide included open-ended questions about theirexperience of migration pathways to HIV diagnosisand life with HIV

Interviews were translated and transcribed intoEnglish managed using NVIVO v9 and analysed usingFramework (Ritchie amp Lewis 2003) and thematic con-tent analysis (Green amp Thorogood 2009) Ethical clear-ance was obtained from the Imperial College ResearchEthics Committee and the local Institutional EthicsReview Board in Allahabad Informed consent wasobtained from all interviewees

Results

Twenty men and 13 women aged 24ndash45 were inter-viewed including two couples The men reported pastor on-going migrant work in factories transportationconstruction running small stalls or similar work Inkeeping with local migration patterns the women werewives or widows of migrant men rather than migrantworkers themselves Four men and five women hadbeen diagnosed in the last six months and the majority(24) were on ART

No participant had actively sought HIV testing manyhad been aware of ldquoAIDSrdquo but without concern aboutpersonal risk We identified three pathways to HIV test-ing and diagnosis presented in Table 1 The two domi-nant pathways broadly coinciding with the experiencesof male and female respondents are illustrated inFigure 1(a) and 1(b) and detailed below

Menrsquos journeys of discovery

Men often worked 10ndash16-hour shifts on informal con-tracts paid by the hour or piece produced and generally

not entitled to sick pay Many talked of experiencingrecurrent fever diarrhoea and weight loss for monthsor years prior to their HIV diagnosis They respondedby visiting private practitioners who offered them symp-tomatic relief quickly at low cost

ldquohellip somebody who is a worker he will try to get betterfor less money hersquoll try to get better for that 50 rupeeshellip So thatrsquos whyhellip everybody goes there [cheap localpractice]helliprdquo (ID 28)

Several respondents described being diagnosed andtreated for several conditions

ldquoI had a fever constantly for a month month and a halfSomeone said Irsquod got typhoid somebody else said Irsquod gotmalariahelliprdquo (ID 22)

Figure 1 Routes to HIV diagnosis for migrant men and wives ofmigrant men (a) Dominant pathway to testing for migrant men(b) Dominant pathway to testing for wives of migrant men

Table 1 The three pathways to HIV testing and diagnosisbullIn response to prolonged illness and no benefit from various treatmentsusually obtained from private practitioners largest group (n = 19) mostlymenbullFollowing advice from relatives or friends after a spouse was diagnosed HIV-positive second largest group (n = 11) mostly womenbullThrough routine provider-initiated screening prior to a medicalsurgicalprocedure (n = 2) or pre-emigration screening for when seeking work abroad(n = 1)

AIDS CARE 1419

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While some private practitioners treated patients forother conditions not testing for HIV until later on othersapparently tested for HIV but did not disclose it straight-away Some told patients they had HIV but not about thefree ART available at public hospitals so patients contin-ued to seek treatment at their own expense It was unclearwhether any of these treatments were ART

ldquoBut then I became sickerhellip then some tests were doneat a private clinic (hellip ) it turned out to be HIV (hellip )But when those medicines were so expensive I stoppedtaking them (hellip ) Again I became very illrdquo (ID 25)

Eventually when migrant men were too debilitated towork they returned home Some continued seekingtreatments from local doctors and healers Only whentheir health collapsed or the money ran out completelyfamily members took them to public hospitals wherethey were diagnosed and referred to the ART centre

ldquoI was getting this fever Irsquod just take some medicine(hellip ) completely sickened I moved back home I gotsome treatment there in the local nursing home (hellip )When I was on my last legs they took me to [district hos-pital] (hellip ) it turned out to be HIV and treatmentstarted over therehelliprdquo (ID 6)

Finally more than half of the menrsquos wives were HIV-positive and two menrsquos wives remained untested ndashthese men concerned about the social implications ofhaving HIV had chosen to remain quiet

Womenrsquos journeys of discovery

Women in this study had accessed the ART centre viatheir husbands or other male family members Thedominant family form in rural Uttar Pradesh is the patri-archal and patrilineal family where womenrsquos lives arerestricted to normatively defined ldquofemalerdquo domainsthat lie within the household Their exposure to infor-mation and movement outside the home is strictly man-aged by male andor older relatives (Jeffery amp Jeffery1997) In this study the low status of women in the mar-ital household kept them unaware of their personal riskof HIV and they did not receive testing or treatment untilfacilitated by male relatives Their migrant husbandsbeing absent or sick (or dying) from HIV-related illnesscontributed to the delay

All but one2 of the women interviewed had been diag-nosed following the death or diagnosis of their husbandsThehusbands ofwidowshad either failed to tell theirwivesabout theirHIV and had subsequently died or in one casethe woman found out just before her husbandrsquos death

ldquohellipwhen he was in a bad state then I was called toBombay So I went there (hellip ) when I saw the reporthe had ithellipAnd then they got me tested toordquo (ID 16)

Widows with HIV found themselves in a situation wherethere they had scant understanding of their conditionand minimal emotional and financial support fromtheir marital families For many like the men eventualcontact with the ART centre was precipitated by a medi-cal or financial emergency

ldquoMy whole body was swollen I went yellow I couldnrsquotwalk my body hurt (hellip ) I first went to the governmentclinic (hellip ) then I went to a private clinic When I didnrsquotget any relief they sent me here [ART centre]rdquo (ID 8)

Delayed disclosure was also reported by women whosehusbands were alive Migrating for work may have facili-tated hiding their diagnosis but even when men weresick at home other family members sometimes preventedtheir wives from accessing medical reports A minority ofwomen with living husbands had been more fortunatetheir husbandsrsquo HIV discovery was followed quickly bytheir own HIV test when access to the ART centre hadalready been secured via their husbands

Discussion

Despite targeted migrant awareness campaigns and freeHIV testing and treatment people in this study weremostly unable to access these services until faced withsome kind of medical or financial crisis intimately linkedto their status as migrants or migrantsrsquo wives Delays inHIV testing postponed access to ART and prolongedthe period during which they could transmit HIV toothers in their sexual networks (Rai et al 2014)

Figure 2 represents our theoretical framework forunderstanding migrant familiesrsquo convoluted pathwaysinto care

Structural factors The precarious nature of migrantwork with its long shifts informal employment contractsand lack of sick pay (Deshingkar amp Akter 2009Faetanini amp Tankha 2013) created significant opportu-nity costs of seeking medical care leading men towardsquick inexpensive symptom-management solutionsThe dominance of private health care is partly attributedto its reputation as more efficient convenient and confi-dential than public sector services (Bhat 1999 SheikhPorter Kielmann amp Rangan 2006) However the medi-cal mismanagement respondents faced whereby theywere treated for many other conditions before HIVwas diagnosed echoes previous research where privatepractitioners were frequently found not following cur-rent HIV guidelines (Chomat et al 2009 Datye et al2006 Kielmann et al 2005)

Social factors This study supports previous researchthat marriage is the main risk factor for HIV (Ganga-khedkar et al 1997 Saggurti amp Malviya 2009) and

1420 T RAI ET AL

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ay 2

016

that aside from antenatal HIV screening marriedwomen are usually tested following their husbandrsquosHIV diagnosis (Joseph et al 2010 Malave RamakrishnaHeylen Bharat amp Ekstrand 2013) Being a migrantrsquoswife influenced both their risk of becoming HIV-infectedand subsequent pathways into care Womenrsquos low statusin the marital home made worse by absent husbandskept them ignorant of their HIV risk and delayed accessto care when unwell Similar to other studies on partnernotification (Chandra Deepthivarma amp Manjula 2003Taraphdar Dasgupta amp Saha 2007) stigma about hav-ing a socially disgraceful disease such as HIV contributedto some menrsquos hesitation in telling their wives

Individual-level factors Fever diarrhoea and weightloss are the usual manifestations of conditions such astyphoid malaria tuberculosis and dengue ndash all highlyprevalent illnesses in India especially for migrant workersliving andworking in congested unhygienic places such asurban slums and factories (Borhade 2011 Chatterjee2006) and therefore study respondents not making thelink to HIV is understandable Seeking quick and accessi-ble symptomatic relief for these familiar and frequentlyexperienced health conditions sometimes repeatedlyrather than going to a public hospital (where there is a

greater likelihood of being referred to HIV services) maybe especially applicable to circular migrant workers whoare in their work locations for finite periods and areoften not entitled to sick pay (Deshingkar amp Akter 2009)

Extensive awareness campaigns at source transit anddestination (NACO 2010) may reduce the delays intocare for HIV-positive migrant families but they largelyneglect many of the structural and social factors thatmake HIV-positive migrant families particularly vulner-able We could only sample those who were accessingART services but the treacherous journeys of theselsquoluckyrsquo individuals give some suggestion of the plight ofthose not yet on the ART register

Notes

1 Areas with an estimated antenatal HIV prevalence of gt12 The remaining woman was diagnosed following illness

after her marriage dissolved

Acknowledgements

We are grateful to Dr Kavita S Agarwal for arranging intro-ductions with local contacts at the HIV clinics and for

Figure 2 The structural social and individual factors delaying HIV diagnosis and access to care for HIV-positive migrant workers andtheir partners

AIDS CARE 1421

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016

facilitating in the fieldwork Thanks also to Professor PeterPiot for providing feedback on previous drafts of thismanuscript

Disclosure statement

No potential conflict of interest was reported by the authors

Funding

This work was supported by a Medical Research Council ndashDoctoral Training Award (grant code G24038) studentshipheld by TR during her PhD and a Wellcome Trust grant(grant code 090285Z09Z) held by HW

References

Abbas R ampVarmaD (2014) Internal labormigration in Indiaraises integration challenges for migrants Migrationinformation source Retrieved from Migration PolicyInstitute website httpwwwmigrationpolicyorgarticleinternal-labor-migration-india-raises-integration-challenges-migrants

Bhat R (1999) Characteristics of private medical practice inIndia A provider perspective Health Policy Plan 14(1)26ndash37

Borhade A (2011) Migrantsrsquo (denied) access to health care inIndia Paper presented at the UNESCOUNICEF nationalworkshop on Internal Migration and Human Developmentin India New Delhi

Census (2012) Census India dashboard Retrieved October2012 from httpcensusindiagovin2011censuscensusinfodashboardindexhtml

Chandra P S Deepthivarma S amp Manjula V (2003)Disclosure of HIV infection in South India Patternsreasons and reactions AIDS Care 15(2) 207ndash215 doi1010800954012031000068353

Chatterjee C B (2006) Identities in motion Migration andhealth in India Mumbai The Centre for Enquiry intoHealth and Allied Themes (CEHAT)

Chomat A M Wilson I B Wanke C A Selvakumar AJohn K R amp Isaac R (2009) Knowledge beliefs andhealth care practices relating to treatment of HIV inVellore India AIDS Patient Care STDS 23(6) 477ndash484doi101089apc20080222

Coffee M Lurie M N amp Garnett G P (2007) Modelling theimpact of migration on the HIV epidemic in South AfricaAIDS 21(3) 343ndash350 doi101097QAD0b013e328011dac9 [doi] 00002030ndash200701300ndash00008 [pii]

Datye V Kielmann K Sheikh K Deshmukh DDeshpande S Porter J amp Rangan S (2006) Private prac-titionersrsquo communications with patients around HIV testingin Pune India Health Policy Plan 21(5) 343ndash352 doi101093heapolczl021

Decosas J Kane F Anarfi J K Sodji K D ampWagner H U(1995) Migration and AIDS Lancet 346(8978) 826ndash828

Deshingkar P amp Akter S (2009) Migration and humandevelopment in India (Human Development ResearchPaper 200913) United Nations DevelopmentProgramme Retrieved from httphdrundporgsitesdefaultfileshdrp_2009_13pdf

Faetanini M amp Tankha R (2013) Social inclusion of internalmigrants in India New Delhi UNESCO Retrieved fromhttpunesdocunescoorgimages0022002237223702epdf

Gangakhedkar R R Bentley M E Divekar A D GadkariD Mehendale S M Shepherd M E Quinn T C (1997)Spread of HIV infection in married monogamous women inIndia JAMA 278(23) 2090ndash2092

Green J amp Thorogood N (2009) Qualitative methods forhealth research (2nd ed) London Sage

Jeffery R amp Jeffery P (1997)Womenrsquos agency and fertility InR Jeffery amp P Jeffery (Eds) Population gender and politicsDemographic change in rural North India (pp 117ndash164)Cambridge Cambridge University Press

Joseph S Kielmann K Kudale A Sheikh K Shinde SPorter J amp Rangan S (2010) Examining sex differentialsin the uptake and process of HIV testing in three highprevalence districts of India AIDS Care 22(3) 286ndash295doi10108009540120903193674

Kielmann K Deshmukh D Deshpande S Datye VPorter J amp Rangan S (2005) Managing uncertaintyaround HIVAIDS in an urban setting Private medical pro-viders and their patients in Pune India Social Science ampMedicine 61(7) 1540ndash1550 doi101016jsocscimed200502008

Malave S Ramakrishna J Heylen E Bharat S amp EkstrandM L (2013) Differences in testing stigma and perceivedconsequences of stigmatization among heterosexual menand women living with HIV in Bengaluru India AIDSCare doi101080095401212013819409

NACO (2010) Policy strategy and operational plan ndash HIVinterventions for migrants New Delhi Ministry of Healthand Family Welfare Government of India

NACO (2014a) Annual report 2013ndash2014 New DelhiNational AIDS Control Organisation Ministry of Healthand Family Welfare Government of India Retrievedfrom httpwwwnacogovinupload201420mslnsNACO_English202013ndash14pdf

NACO (2014b) State fact sheets 2013ndash2014 New DelhiNational AIDS Control Organisation Ministry of Healthand Family Welfare Government of India Retrieved fromhttpwwwnacogovinupload201420mslnsState20Fact20Sheet202013ndash14pdf

Nepal B (2007) Population mobility and spread of HIVacross the Indo-Nepal border Journal of HealthPopulation and Nutrition 25(3) 267ndash277

Poundstone K E Strathdee S A amp Celentano D D (2004)The social epidemiology of human immunodeficiency virusacquired immunodeficiency syndrome EpidemiologicReviews 26 22ndash35 doi101093epirevmxh005

Rai T Lambert H S Borquez A B Saggurti N MahapatraB amp Ward H (2014) Circular labor migration and HIV inIndia Exploring heterogeneity in bridge populations con-necting areas of high and low HIV infection prevalenceJournal of Infectious Diseases 210(Suppl 2) S556ndashS561doi101093infdisjiu432

Rai T Lambert H S amp Ward H (in press) Migration as arisk and a livelihood strategy HIV across the life course ofmigrant families in India Global Public Health

Ritchie J amp Lewis J (2003) Qualitative research practice Aguide for social science students and researchers LondonSage

1422 T RAI ET AL

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Saggurti N amp Malviya A (2009) HIV transmission in inti-mate partner relations in India New Delhi UNAIDS

Sarna A Bachani D Sebastian M Sogarwal R amp BattalaM (2010) Factors affecting enrolment of PLHIV into ARTservices in India Delhi Population Council

Sheikh K Porter J Kielmann K amp Rangan S (2006) Publicndashprivate partnerships for equity of access to care for tuberculosisandHIVAIDS Lessons from Pune India Transactions of theRoyal Society of Tropical Medicine and Hygiene 100(4) 312ndash320 doi101016jtrstmh200504023

Srivastava R S (2011) Labour migration in India Recenttrends patterns and policy issues The Indian Journal ofLabour Economics 54(3) 411ndash440

Srivastava R S (2005) Country paper India internalmigration links with poverty and development Paper pre-sented at the Regional Conference on Migration andDevelopment in Asia Lanzhou China

Steinbrook R (2007) HIV in India ndash A complex epidemicNew England Journal of Medicine 356(11) 1089ndash1093doi101056NEJMp078009

Sweat M D amp Denison J A (1995) Reducing HIV inci-dence in developing countries with structural andenvironmental interventions AIDS 9(Suppl A) S251ndashS257

Taraphdar P Dasgupta A amp Saha B (2007) Disclosureamong people living with HIVAIDS Indian Journal ofCommunity Medicine 32(4) 280ndash282

UNAIDS (2008) Redefining AIDS in Asia Crafting and effec-tive response Report of the Commission on AIDS in IndiaDelhi Commission on AIDS in Asia

World Health Organisation (2013) Consolidated guidelines onthe use of antiretroviral drugs for treating and preventingHIV infection Recommendations for a public healthapproach Retrieved from httpwwwwhointhivpubguidelinesarv2013downloaden

Zhang L Chow E P Jahn H J Kraemer A amp Wilson DP (2013) High HIV prevalence and risk of infection amongrural-to-urban migrants in various migration stages inChina A systematic review and meta-analysis (1537ndash4521(Electronic))

AIDS CARE 1423

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  • Abstract
  • Introduction
  • Methods
  • Results
    • Mens journeys of discovery
    • Womens journeys of discovery
      • Discussion
      • Notes
      • Acknowledgements
      • Disclosure statement
      • References

While some private practitioners treated patients forother conditions not testing for HIV until later on othersapparently tested for HIV but did not disclose it straight-away Some told patients they had HIV but not about thefree ART available at public hospitals so patients contin-ued to seek treatment at their own expense It was unclearwhether any of these treatments were ART

ldquoBut then I became sickerhellip then some tests were doneat a private clinic (hellip ) it turned out to be HIV (hellip )But when those medicines were so expensive I stoppedtaking them (hellip ) Again I became very illrdquo (ID 25)

Eventually when migrant men were too debilitated towork they returned home Some continued seekingtreatments from local doctors and healers Only whentheir health collapsed or the money ran out completelyfamily members took them to public hospitals wherethey were diagnosed and referred to the ART centre

ldquoI was getting this fever Irsquod just take some medicine(hellip ) completely sickened I moved back home I gotsome treatment there in the local nursing home (hellip )When I was on my last legs they took me to [district hos-pital] (hellip ) it turned out to be HIV and treatmentstarted over therehelliprdquo (ID 6)

Finally more than half of the menrsquos wives were HIV-positive and two menrsquos wives remained untested ndashthese men concerned about the social implications ofhaving HIV had chosen to remain quiet

Womenrsquos journeys of discovery

Women in this study had accessed the ART centre viatheir husbands or other male family members Thedominant family form in rural Uttar Pradesh is the patri-archal and patrilineal family where womenrsquos lives arerestricted to normatively defined ldquofemalerdquo domainsthat lie within the household Their exposure to infor-mation and movement outside the home is strictly man-aged by male andor older relatives (Jeffery amp Jeffery1997) In this study the low status of women in the mar-ital household kept them unaware of their personal riskof HIV and they did not receive testing or treatment untilfacilitated by male relatives Their migrant husbandsbeing absent or sick (or dying) from HIV-related illnesscontributed to the delay

All but one2 of the women interviewed had been diag-nosed following the death or diagnosis of their husbandsThehusbands ofwidowshad either failed to tell theirwivesabout theirHIV and had subsequently died or in one casethe woman found out just before her husbandrsquos death

ldquohellipwhen he was in a bad state then I was called toBombay So I went there (hellip ) when I saw the reporthe had ithellipAnd then they got me tested toordquo (ID 16)

Widows with HIV found themselves in a situation wherethere they had scant understanding of their conditionand minimal emotional and financial support fromtheir marital families For many like the men eventualcontact with the ART centre was precipitated by a medi-cal or financial emergency

ldquoMy whole body was swollen I went yellow I couldnrsquotwalk my body hurt (hellip ) I first went to the governmentclinic (hellip ) then I went to a private clinic When I didnrsquotget any relief they sent me here [ART centre]rdquo (ID 8)

Delayed disclosure was also reported by women whosehusbands were alive Migrating for work may have facili-tated hiding their diagnosis but even when men weresick at home other family members sometimes preventedtheir wives from accessing medical reports A minority ofwomen with living husbands had been more fortunatetheir husbandsrsquo HIV discovery was followed quickly bytheir own HIV test when access to the ART centre hadalready been secured via their husbands

Discussion

Despite targeted migrant awareness campaigns and freeHIV testing and treatment people in this study weremostly unable to access these services until faced withsome kind of medical or financial crisis intimately linkedto their status as migrants or migrantsrsquo wives Delays inHIV testing postponed access to ART and prolongedthe period during which they could transmit HIV toothers in their sexual networks (Rai et al 2014)

Figure 2 represents our theoretical framework forunderstanding migrant familiesrsquo convoluted pathwaysinto care

Structural factors The precarious nature of migrantwork with its long shifts informal employment contractsand lack of sick pay (Deshingkar amp Akter 2009Faetanini amp Tankha 2013) created significant opportu-nity costs of seeking medical care leading men towardsquick inexpensive symptom-management solutionsThe dominance of private health care is partly attributedto its reputation as more efficient convenient and confi-dential than public sector services (Bhat 1999 SheikhPorter Kielmann amp Rangan 2006) However the medi-cal mismanagement respondents faced whereby theywere treated for many other conditions before HIVwas diagnosed echoes previous research where privatepractitioners were frequently found not following cur-rent HIV guidelines (Chomat et al 2009 Datye et al2006 Kielmann et al 2005)

Social factors This study supports previous researchthat marriage is the main risk factor for HIV (Ganga-khedkar et al 1997 Saggurti amp Malviya 2009) and

1420 T RAI ET AL

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that aside from antenatal HIV screening marriedwomen are usually tested following their husbandrsquosHIV diagnosis (Joseph et al 2010 Malave RamakrishnaHeylen Bharat amp Ekstrand 2013) Being a migrantrsquoswife influenced both their risk of becoming HIV-infectedand subsequent pathways into care Womenrsquos low statusin the marital home made worse by absent husbandskept them ignorant of their HIV risk and delayed accessto care when unwell Similar to other studies on partnernotification (Chandra Deepthivarma amp Manjula 2003Taraphdar Dasgupta amp Saha 2007) stigma about hav-ing a socially disgraceful disease such as HIV contributedto some menrsquos hesitation in telling their wives

Individual-level factors Fever diarrhoea and weightloss are the usual manifestations of conditions such astyphoid malaria tuberculosis and dengue ndash all highlyprevalent illnesses in India especially for migrant workersliving andworking in congested unhygienic places such asurban slums and factories (Borhade 2011 Chatterjee2006) and therefore study respondents not making thelink to HIV is understandable Seeking quick and accessi-ble symptomatic relief for these familiar and frequentlyexperienced health conditions sometimes repeatedlyrather than going to a public hospital (where there is a

greater likelihood of being referred to HIV services) maybe especially applicable to circular migrant workers whoare in their work locations for finite periods and areoften not entitled to sick pay (Deshingkar amp Akter 2009)

Extensive awareness campaigns at source transit anddestination (NACO 2010) may reduce the delays intocare for HIV-positive migrant families but they largelyneglect many of the structural and social factors thatmake HIV-positive migrant families particularly vulner-able We could only sample those who were accessingART services but the treacherous journeys of theselsquoluckyrsquo individuals give some suggestion of the plight ofthose not yet on the ART register

Notes

1 Areas with an estimated antenatal HIV prevalence of gt12 The remaining woman was diagnosed following illness

after her marriage dissolved

Acknowledgements

We are grateful to Dr Kavita S Agarwal for arranging intro-ductions with local contacts at the HIV clinics and for

Figure 2 The structural social and individual factors delaying HIV diagnosis and access to care for HIV-positive migrant workers andtheir partners

AIDS CARE 1421

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facilitating in the fieldwork Thanks also to Professor PeterPiot for providing feedback on previous drafts of thismanuscript

Disclosure statement

No potential conflict of interest was reported by the authors

Funding

This work was supported by a Medical Research Council ndashDoctoral Training Award (grant code G24038) studentshipheld by TR during her PhD and a Wellcome Trust grant(grant code 090285Z09Z) held by HW

References

Abbas R ampVarmaD (2014) Internal labormigration in Indiaraises integration challenges for migrants Migrationinformation source Retrieved from Migration PolicyInstitute website httpwwwmigrationpolicyorgarticleinternal-labor-migration-india-raises-integration-challenges-migrants

Bhat R (1999) Characteristics of private medical practice inIndia A provider perspective Health Policy Plan 14(1)26ndash37

Borhade A (2011) Migrantsrsquo (denied) access to health care inIndia Paper presented at the UNESCOUNICEF nationalworkshop on Internal Migration and Human Developmentin India New Delhi

Census (2012) Census India dashboard Retrieved October2012 from httpcensusindiagovin2011censuscensusinfodashboardindexhtml

Chandra P S Deepthivarma S amp Manjula V (2003)Disclosure of HIV infection in South India Patternsreasons and reactions AIDS Care 15(2) 207ndash215 doi1010800954012031000068353

Chatterjee C B (2006) Identities in motion Migration andhealth in India Mumbai The Centre for Enquiry intoHealth and Allied Themes (CEHAT)

Chomat A M Wilson I B Wanke C A Selvakumar AJohn K R amp Isaac R (2009) Knowledge beliefs andhealth care practices relating to treatment of HIV inVellore India AIDS Patient Care STDS 23(6) 477ndash484doi101089apc20080222

Coffee M Lurie M N amp Garnett G P (2007) Modelling theimpact of migration on the HIV epidemic in South AfricaAIDS 21(3) 343ndash350 doi101097QAD0b013e328011dac9 [doi] 00002030ndash200701300ndash00008 [pii]

Datye V Kielmann K Sheikh K Deshmukh DDeshpande S Porter J amp Rangan S (2006) Private prac-titionersrsquo communications with patients around HIV testingin Pune India Health Policy Plan 21(5) 343ndash352 doi101093heapolczl021

Decosas J Kane F Anarfi J K Sodji K D ampWagner H U(1995) Migration and AIDS Lancet 346(8978) 826ndash828

Deshingkar P amp Akter S (2009) Migration and humandevelopment in India (Human Development ResearchPaper 200913) United Nations DevelopmentProgramme Retrieved from httphdrundporgsitesdefaultfileshdrp_2009_13pdf

Faetanini M amp Tankha R (2013) Social inclusion of internalmigrants in India New Delhi UNESCO Retrieved fromhttpunesdocunescoorgimages0022002237223702epdf

Gangakhedkar R R Bentley M E Divekar A D GadkariD Mehendale S M Shepherd M E Quinn T C (1997)Spread of HIV infection in married monogamous women inIndia JAMA 278(23) 2090ndash2092

Green J amp Thorogood N (2009) Qualitative methods forhealth research (2nd ed) London Sage

Jeffery R amp Jeffery P (1997)Womenrsquos agency and fertility InR Jeffery amp P Jeffery (Eds) Population gender and politicsDemographic change in rural North India (pp 117ndash164)Cambridge Cambridge University Press

Joseph S Kielmann K Kudale A Sheikh K Shinde SPorter J amp Rangan S (2010) Examining sex differentialsin the uptake and process of HIV testing in three highprevalence districts of India AIDS Care 22(3) 286ndash295doi10108009540120903193674

Kielmann K Deshmukh D Deshpande S Datye VPorter J amp Rangan S (2005) Managing uncertaintyaround HIVAIDS in an urban setting Private medical pro-viders and their patients in Pune India Social Science ampMedicine 61(7) 1540ndash1550 doi101016jsocscimed200502008

Malave S Ramakrishna J Heylen E Bharat S amp EkstrandM L (2013) Differences in testing stigma and perceivedconsequences of stigmatization among heterosexual menand women living with HIV in Bengaluru India AIDSCare doi101080095401212013819409

NACO (2010) Policy strategy and operational plan ndash HIVinterventions for migrants New Delhi Ministry of Healthand Family Welfare Government of India

NACO (2014a) Annual report 2013ndash2014 New DelhiNational AIDS Control Organisation Ministry of Healthand Family Welfare Government of India Retrievedfrom httpwwwnacogovinupload201420mslnsNACO_English202013ndash14pdf

NACO (2014b) State fact sheets 2013ndash2014 New DelhiNational AIDS Control Organisation Ministry of Healthand Family Welfare Government of India Retrieved fromhttpwwwnacogovinupload201420mslnsState20Fact20Sheet202013ndash14pdf

Nepal B (2007) Population mobility and spread of HIVacross the Indo-Nepal border Journal of HealthPopulation and Nutrition 25(3) 267ndash277

Poundstone K E Strathdee S A amp Celentano D D (2004)The social epidemiology of human immunodeficiency virusacquired immunodeficiency syndrome EpidemiologicReviews 26 22ndash35 doi101093epirevmxh005

Rai T Lambert H S Borquez A B Saggurti N MahapatraB amp Ward H (2014) Circular labor migration and HIV inIndia Exploring heterogeneity in bridge populations con-necting areas of high and low HIV infection prevalenceJournal of Infectious Diseases 210(Suppl 2) S556ndashS561doi101093infdisjiu432

Rai T Lambert H S amp Ward H (in press) Migration as arisk and a livelihood strategy HIV across the life course ofmigrant families in India Global Public Health

Ritchie J amp Lewis J (2003) Qualitative research practice Aguide for social science students and researchers LondonSage

1422 T RAI ET AL

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ded

by [

Impe

rial

Col

lege

Lon

don

Lib

rary

] at

08

37 1

7 M

ay 2

016

Saggurti N amp Malviya A (2009) HIV transmission in inti-mate partner relations in India New Delhi UNAIDS

Sarna A Bachani D Sebastian M Sogarwal R amp BattalaM (2010) Factors affecting enrolment of PLHIV into ARTservices in India Delhi Population Council

Sheikh K Porter J Kielmann K amp Rangan S (2006) Publicndashprivate partnerships for equity of access to care for tuberculosisandHIVAIDS Lessons from Pune India Transactions of theRoyal Society of Tropical Medicine and Hygiene 100(4) 312ndash320 doi101016jtrstmh200504023

Srivastava R S (2011) Labour migration in India Recenttrends patterns and policy issues The Indian Journal ofLabour Economics 54(3) 411ndash440

Srivastava R S (2005) Country paper India internalmigration links with poverty and development Paper pre-sented at the Regional Conference on Migration andDevelopment in Asia Lanzhou China

Steinbrook R (2007) HIV in India ndash A complex epidemicNew England Journal of Medicine 356(11) 1089ndash1093doi101056NEJMp078009

Sweat M D amp Denison J A (1995) Reducing HIV inci-dence in developing countries with structural andenvironmental interventions AIDS 9(Suppl A) S251ndashS257

Taraphdar P Dasgupta A amp Saha B (2007) Disclosureamong people living with HIVAIDS Indian Journal ofCommunity Medicine 32(4) 280ndash282

UNAIDS (2008) Redefining AIDS in Asia Crafting and effec-tive response Report of the Commission on AIDS in IndiaDelhi Commission on AIDS in Asia

World Health Organisation (2013) Consolidated guidelines onthe use of antiretroviral drugs for treating and preventingHIV infection Recommendations for a public healthapproach Retrieved from httpwwwwhointhivpubguidelinesarv2013downloaden

Zhang L Chow E P Jahn H J Kraemer A amp Wilson DP (2013) High HIV prevalence and risk of infection amongrural-to-urban migrants in various migration stages inChina A systematic review and meta-analysis (1537ndash4521(Electronic))

AIDS CARE 1423

Dow

nloa

ded

by [

Impe

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] at

08

37 1

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ay 2

016

  • Abstract
  • Introduction
  • Methods
  • Results
    • Mens journeys of discovery
    • Womens journeys of discovery
      • Discussion
      • Notes
      • Acknowledgements
      • Disclosure statement
      • References

that aside from antenatal HIV screening marriedwomen are usually tested following their husbandrsquosHIV diagnosis (Joseph et al 2010 Malave RamakrishnaHeylen Bharat amp Ekstrand 2013) Being a migrantrsquoswife influenced both their risk of becoming HIV-infectedand subsequent pathways into care Womenrsquos low statusin the marital home made worse by absent husbandskept them ignorant of their HIV risk and delayed accessto care when unwell Similar to other studies on partnernotification (Chandra Deepthivarma amp Manjula 2003Taraphdar Dasgupta amp Saha 2007) stigma about hav-ing a socially disgraceful disease such as HIV contributedto some menrsquos hesitation in telling their wives

Individual-level factors Fever diarrhoea and weightloss are the usual manifestations of conditions such astyphoid malaria tuberculosis and dengue ndash all highlyprevalent illnesses in India especially for migrant workersliving andworking in congested unhygienic places such asurban slums and factories (Borhade 2011 Chatterjee2006) and therefore study respondents not making thelink to HIV is understandable Seeking quick and accessi-ble symptomatic relief for these familiar and frequentlyexperienced health conditions sometimes repeatedlyrather than going to a public hospital (where there is a

greater likelihood of being referred to HIV services) maybe especially applicable to circular migrant workers whoare in their work locations for finite periods and areoften not entitled to sick pay (Deshingkar amp Akter 2009)

Extensive awareness campaigns at source transit anddestination (NACO 2010) may reduce the delays intocare for HIV-positive migrant families but they largelyneglect many of the structural and social factors thatmake HIV-positive migrant families particularly vulner-able We could only sample those who were accessingART services but the treacherous journeys of theselsquoluckyrsquo individuals give some suggestion of the plight ofthose not yet on the ART register

Notes

1 Areas with an estimated antenatal HIV prevalence of gt12 The remaining woman was diagnosed following illness

after her marriage dissolved

Acknowledgements

We are grateful to Dr Kavita S Agarwal for arranging intro-ductions with local contacts at the HIV clinics and for

Figure 2 The structural social and individual factors delaying HIV diagnosis and access to care for HIV-positive migrant workers andtheir partners

AIDS CARE 1421

Dow

nloa

ded

by [

Impe

rial

Col

lege

Lon

don

Lib

rary

] at

08

37 1

7 M

ay 2

016

facilitating in the fieldwork Thanks also to Professor PeterPiot for providing feedback on previous drafts of thismanuscript

Disclosure statement

No potential conflict of interest was reported by the authors

Funding

This work was supported by a Medical Research Council ndashDoctoral Training Award (grant code G24038) studentshipheld by TR during her PhD and a Wellcome Trust grant(grant code 090285Z09Z) held by HW

References

Abbas R ampVarmaD (2014) Internal labormigration in Indiaraises integration challenges for migrants Migrationinformation source Retrieved from Migration PolicyInstitute website httpwwwmigrationpolicyorgarticleinternal-labor-migration-india-raises-integration-challenges-migrants

Bhat R (1999) Characteristics of private medical practice inIndia A provider perspective Health Policy Plan 14(1)26ndash37

Borhade A (2011) Migrantsrsquo (denied) access to health care inIndia Paper presented at the UNESCOUNICEF nationalworkshop on Internal Migration and Human Developmentin India New Delhi

Census (2012) Census India dashboard Retrieved October2012 from httpcensusindiagovin2011censuscensusinfodashboardindexhtml

Chandra P S Deepthivarma S amp Manjula V (2003)Disclosure of HIV infection in South India Patternsreasons and reactions AIDS Care 15(2) 207ndash215 doi1010800954012031000068353

Chatterjee C B (2006) Identities in motion Migration andhealth in India Mumbai The Centre for Enquiry intoHealth and Allied Themes (CEHAT)

Chomat A M Wilson I B Wanke C A Selvakumar AJohn K R amp Isaac R (2009) Knowledge beliefs andhealth care practices relating to treatment of HIV inVellore India AIDS Patient Care STDS 23(6) 477ndash484doi101089apc20080222

Coffee M Lurie M N amp Garnett G P (2007) Modelling theimpact of migration on the HIV epidemic in South AfricaAIDS 21(3) 343ndash350 doi101097QAD0b013e328011dac9 [doi] 00002030ndash200701300ndash00008 [pii]

Datye V Kielmann K Sheikh K Deshmukh DDeshpande S Porter J amp Rangan S (2006) Private prac-titionersrsquo communications with patients around HIV testingin Pune India Health Policy Plan 21(5) 343ndash352 doi101093heapolczl021

Decosas J Kane F Anarfi J K Sodji K D ampWagner H U(1995) Migration and AIDS Lancet 346(8978) 826ndash828

Deshingkar P amp Akter S (2009) Migration and humandevelopment in India (Human Development ResearchPaper 200913) United Nations DevelopmentProgramme Retrieved from httphdrundporgsitesdefaultfileshdrp_2009_13pdf

Faetanini M amp Tankha R (2013) Social inclusion of internalmigrants in India New Delhi UNESCO Retrieved fromhttpunesdocunescoorgimages0022002237223702epdf

Gangakhedkar R R Bentley M E Divekar A D GadkariD Mehendale S M Shepherd M E Quinn T C (1997)Spread of HIV infection in married monogamous women inIndia JAMA 278(23) 2090ndash2092

Green J amp Thorogood N (2009) Qualitative methods forhealth research (2nd ed) London Sage

Jeffery R amp Jeffery P (1997)Womenrsquos agency and fertility InR Jeffery amp P Jeffery (Eds) Population gender and politicsDemographic change in rural North India (pp 117ndash164)Cambridge Cambridge University Press

Joseph S Kielmann K Kudale A Sheikh K Shinde SPorter J amp Rangan S (2010) Examining sex differentialsin the uptake and process of HIV testing in three highprevalence districts of India AIDS Care 22(3) 286ndash295doi10108009540120903193674

Kielmann K Deshmukh D Deshpande S Datye VPorter J amp Rangan S (2005) Managing uncertaintyaround HIVAIDS in an urban setting Private medical pro-viders and their patients in Pune India Social Science ampMedicine 61(7) 1540ndash1550 doi101016jsocscimed200502008

Malave S Ramakrishna J Heylen E Bharat S amp EkstrandM L (2013) Differences in testing stigma and perceivedconsequences of stigmatization among heterosexual menand women living with HIV in Bengaluru India AIDSCare doi101080095401212013819409

NACO (2010) Policy strategy and operational plan ndash HIVinterventions for migrants New Delhi Ministry of Healthand Family Welfare Government of India

NACO (2014a) Annual report 2013ndash2014 New DelhiNational AIDS Control Organisation Ministry of Healthand Family Welfare Government of India Retrievedfrom httpwwwnacogovinupload201420mslnsNACO_English202013ndash14pdf

NACO (2014b) State fact sheets 2013ndash2014 New DelhiNational AIDS Control Organisation Ministry of Healthand Family Welfare Government of India Retrieved fromhttpwwwnacogovinupload201420mslnsState20Fact20Sheet202013ndash14pdf

Nepal B (2007) Population mobility and spread of HIVacross the Indo-Nepal border Journal of HealthPopulation and Nutrition 25(3) 267ndash277

Poundstone K E Strathdee S A amp Celentano D D (2004)The social epidemiology of human immunodeficiency virusacquired immunodeficiency syndrome EpidemiologicReviews 26 22ndash35 doi101093epirevmxh005

Rai T Lambert H S Borquez A B Saggurti N MahapatraB amp Ward H (2014) Circular labor migration and HIV inIndia Exploring heterogeneity in bridge populations con-necting areas of high and low HIV infection prevalenceJournal of Infectious Diseases 210(Suppl 2) S556ndashS561doi101093infdisjiu432

Rai T Lambert H S amp Ward H (in press) Migration as arisk and a livelihood strategy HIV across the life course ofmigrant families in India Global Public Health

Ritchie J amp Lewis J (2003) Qualitative research practice Aguide for social science students and researchers LondonSage

1422 T RAI ET AL

Dow

nloa

ded

by [

Impe

rial

Col

lege

Lon

don

Lib

rary

] at

08

37 1

7 M

ay 2

016

Saggurti N amp Malviya A (2009) HIV transmission in inti-mate partner relations in India New Delhi UNAIDS

Sarna A Bachani D Sebastian M Sogarwal R amp BattalaM (2010) Factors affecting enrolment of PLHIV into ARTservices in India Delhi Population Council

Sheikh K Porter J Kielmann K amp Rangan S (2006) Publicndashprivate partnerships for equity of access to care for tuberculosisandHIVAIDS Lessons from Pune India Transactions of theRoyal Society of Tropical Medicine and Hygiene 100(4) 312ndash320 doi101016jtrstmh200504023

Srivastava R S (2011) Labour migration in India Recenttrends patterns and policy issues The Indian Journal ofLabour Economics 54(3) 411ndash440

Srivastava R S (2005) Country paper India internalmigration links with poverty and development Paper pre-sented at the Regional Conference on Migration andDevelopment in Asia Lanzhou China

Steinbrook R (2007) HIV in India ndash A complex epidemicNew England Journal of Medicine 356(11) 1089ndash1093doi101056NEJMp078009

Sweat M D amp Denison J A (1995) Reducing HIV inci-dence in developing countries with structural andenvironmental interventions AIDS 9(Suppl A) S251ndashS257

Taraphdar P Dasgupta A amp Saha B (2007) Disclosureamong people living with HIVAIDS Indian Journal ofCommunity Medicine 32(4) 280ndash282

UNAIDS (2008) Redefining AIDS in Asia Crafting and effec-tive response Report of the Commission on AIDS in IndiaDelhi Commission on AIDS in Asia

World Health Organisation (2013) Consolidated guidelines onthe use of antiretroviral drugs for treating and preventingHIV infection Recommendations for a public healthapproach Retrieved from httpwwwwhointhivpubguidelinesarv2013downloaden

Zhang L Chow E P Jahn H J Kraemer A amp Wilson DP (2013) High HIV prevalence and risk of infection amongrural-to-urban migrants in various migration stages inChina A systematic review and meta-analysis (1537ndash4521(Electronic))

AIDS CARE 1423

Dow

nloa

ded

by [

Impe

rial

Col

lege

Lon

don

Lib

rary

] at

08

37 1

7 M

ay 2

016

  • Abstract
  • Introduction
  • Methods
  • Results
    • Mens journeys of discovery
    • Womens journeys of discovery
      • Discussion
      • Notes
      • Acknowledgements
      • Disclosure statement
      • References

facilitating in the fieldwork Thanks also to Professor PeterPiot for providing feedback on previous drafts of thismanuscript

Disclosure statement

No potential conflict of interest was reported by the authors

Funding

This work was supported by a Medical Research Council ndashDoctoral Training Award (grant code G24038) studentshipheld by TR during her PhD and a Wellcome Trust grant(grant code 090285Z09Z) held by HW

References

Abbas R ampVarmaD (2014) Internal labormigration in Indiaraises integration challenges for migrants Migrationinformation source Retrieved from Migration PolicyInstitute website httpwwwmigrationpolicyorgarticleinternal-labor-migration-india-raises-integration-challenges-migrants

Bhat R (1999) Characteristics of private medical practice inIndia A provider perspective Health Policy Plan 14(1)26ndash37

Borhade A (2011) Migrantsrsquo (denied) access to health care inIndia Paper presented at the UNESCOUNICEF nationalworkshop on Internal Migration and Human Developmentin India New Delhi

Census (2012) Census India dashboard Retrieved October2012 from httpcensusindiagovin2011censuscensusinfodashboardindexhtml

Chandra P S Deepthivarma S amp Manjula V (2003)Disclosure of HIV infection in South India Patternsreasons and reactions AIDS Care 15(2) 207ndash215 doi1010800954012031000068353

Chatterjee C B (2006) Identities in motion Migration andhealth in India Mumbai The Centre for Enquiry intoHealth and Allied Themes (CEHAT)

Chomat A M Wilson I B Wanke C A Selvakumar AJohn K R amp Isaac R (2009) Knowledge beliefs andhealth care practices relating to treatment of HIV inVellore India AIDS Patient Care STDS 23(6) 477ndash484doi101089apc20080222

Coffee M Lurie M N amp Garnett G P (2007) Modelling theimpact of migration on the HIV epidemic in South AfricaAIDS 21(3) 343ndash350 doi101097QAD0b013e328011dac9 [doi] 00002030ndash200701300ndash00008 [pii]

Datye V Kielmann K Sheikh K Deshmukh DDeshpande S Porter J amp Rangan S (2006) Private prac-titionersrsquo communications with patients around HIV testingin Pune India Health Policy Plan 21(5) 343ndash352 doi101093heapolczl021

Decosas J Kane F Anarfi J K Sodji K D ampWagner H U(1995) Migration and AIDS Lancet 346(8978) 826ndash828

Deshingkar P amp Akter S (2009) Migration and humandevelopment in India (Human Development ResearchPaper 200913) United Nations DevelopmentProgramme Retrieved from httphdrundporgsitesdefaultfileshdrp_2009_13pdf

Faetanini M amp Tankha R (2013) Social inclusion of internalmigrants in India New Delhi UNESCO Retrieved fromhttpunesdocunescoorgimages0022002237223702epdf

Gangakhedkar R R Bentley M E Divekar A D GadkariD Mehendale S M Shepherd M E Quinn T C (1997)Spread of HIV infection in married monogamous women inIndia JAMA 278(23) 2090ndash2092

Green J amp Thorogood N (2009) Qualitative methods forhealth research (2nd ed) London Sage

Jeffery R amp Jeffery P (1997)Womenrsquos agency and fertility InR Jeffery amp P Jeffery (Eds) Population gender and politicsDemographic change in rural North India (pp 117ndash164)Cambridge Cambridge University Press

Joseph S Kielmann K Kudale A Sheikh K Shinde SPorter J amp Rangan S (2010) Examining sex differentialsin the uptake and process of HIV testing in three highprevalence districts of India AIDS Care 22(3) 286ndash295doi10108009540120903193674

Kielmann K Deshmukh D Deshpande S Datye VPorter J amp Rangan S (2005) Managing uncertaintyaround HIVAIDS in an urban setting Private medical pro-viders and their patients in Pune India Social Science ampMedicine 61(7) 1540ndash1550 doi101016jsocscimed200502008

Malave S Ramakrishna J Heylen E Bharat S amp EkstrandM L (2013) Differences in testing stigma and perceivedconsequences of stigmatization among heterosexual menand women living with HIV in Bengaluru India AIDSCare doi101080095401212013819409

NACO (2010) Policy strategy and operational plan ndash HIVinterventions for migrants New Delhi Ministry of Healthand Family Welfare Government of India

NACO (2014a) Annual report 2013ndash2014 New DelhiNational AIDS Control Organisation Ministry of Healthand Family Welfare Government of India Retrievedfrom httpwwwnacogovinupload201420mslnsNACO_English202013ndash14pdf

NACO (2014b) State fact sheets 2013ndash2014 New DelhiNational AIDS Control Organisation Ministry of Healthand Family Welfare Government of India Retrieved fromhttpwwwnacogovinupload201420mslnsState20Fact20Sheet202013ndash14pdf

Nepal B (2007) Population mobility and spread of HIVacross the Indo-Nepal border Journal of HealthPopulation and Nutrition 25(3) 267ndash277

Poundstone K E Strathdee S A amp Celentano D D (2004)The social epidemiology of human immunodeficiency virusacquired immunodeficiency syndrome EpidemiologicReviews 26 22ndash35 doi101093epirevmxh005

Rai T Lambert H S Borquez A B Saggurti N MahapatraB amp Ward H (2014) Circular labor migration and HIV inIndia Exploring heterogeneity in bridge populations con-necting areas of high and low HIV infection prevalenceJournal of Infectious Diseases 210(Suppl 2) S556ndashS561doi101093infdisjiu432

Rai T Lambert H S amp Ward H (in press) Migration as arisk and a livelihood strategy HIV across the life course ofmigrant families in India Global Public Health

Ritchie J amp Lewis J (2003) Qualitative research practice Aguide for social science students and researchers LondonSage

1422 T RAI ET AL

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Saggurti N amp Malviya A (2009) HIV transmission in inti-mate partner relations in India New Delhi UNAIDS

Sarna A Bachani D Sebastian M Sogarwal R amp BattalaM (2010) Factors affecting enrolment of PLHIV into ARTservices in India Delhi Population Council

Sheikh K Porter J Kielmann K amp Rangan S (2006) Publicndashprivate partnerships for equity of access to care for tuberculosisandHIVAIDS Lessons from Pune India Transactions of theRoyal Society of Tropical Medicine and Hygiene 100(4) 312ndash320 doi101016jtrstmh200504023

Srivastava R S (2011) Labour migration in India Recenttrends patterns and policy issues The Indian Journal ofLabour Economics 54(3) 411ndash440

Srivastava R S (2005) Country paper India internalmigration links with poverty and development Paper pre-sented at the Regional Conference on Migration andDevelopment in Asia Lanzhou China

Steinbrook R (2007) HIV in India ndash A complex epidemicNew England Journal of Medicine 356(11) 1089ndash1093doi101056NEJMp078009

Sweat M D amp Denison J A (1995) Reducing HIV inci-dence in developing countries with structural andenvironmental interventions AIDS 9(Suppl A) S251ndashS257

Taraphdar P Dasgupta A amp Saha B (2007) Disclosureamong people living with HIVAIDS Indian Journal ofCommunity Medicine 32(4) 280ndash282

UNAIDS (2008) Redefining AIDS in Asia Crafting and effec-tive response Report of the Commission on AIDS in IndiaDelhi Commission on AIDS in Asia

World Health Organisation (2013) Consolidated guidelines onthe use of antiretroviral drugs for treating and preventingHIV infection Recommendations for a public healthapproach Retrieved from httpwwwwhointhivpubguidelinesarv2013downloaden

Zhang L Chow E P Jahn H J Kraemer A amp Wilson DP (2013) High HIV prevalence and risk of infection amongrural-to-urban migrants in various migration stages inChina A systematic review and meta-analysis (1537ndash4521(Electronic))

AIDS CARE 1423

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ay 2

016

  • Abstract
  • Introduction
  • Methods
  • Results
    • Mens journeys of discovery
    • Womens journeys of discovery
      • Discussion
      • Notes
      • Acknowledgements
      • Disclosure statement
      • References

Saggurti N amp Malviya A (2009) HIV transmission in inti-mate partner relations in India New Delhi UNAIDS

Sarna A Bachani D Sebastian M Sogarwal R amp BattalaM (2010) Factors affecting enrolment of PLHIV into ARTservices in India Delhi Population Council

Sheikh K Porter J Kielmann K amp Rangan S (2006) Publicndashprivate partnerships for equity of access to care for tuberculosisandHIVAIDS Lessons from Pune India Transactions of theRoyal Society of Tropical Medicine and Hygiene 100(4) 312ndash320 doi101016jtrstmh200504023

Srivastava R S (2011) Labour migration in India Recenttrends patterns and policy issues The Indian Journal ofLabour Economics 54(3) 411ndash440

Srivastava R S (2005) Country paper India internalmigration links with poverty and development Paper pre-sented at the Regional Conference on Migration andDevelopment in Asia Lanzhou China

Steinbrook R (2007) HIV in India ndash A complex epidemicNew England Journal of Medicine 356(11) 1089ndash1093doi101056NEJMp078009

Sweat M D amp Denison J A (1995) Reducing HIV inci-dence in developing countries with structural andenvironmental interventions AIDS 9(Suppl A) S251ndashS257

Taraphdar P Dasgupta A amp Saha B (2007) Disclosureamong people living with HIVAIDS Indian Journal ofCommunity Medicine 32(4) 280ndash282

UNAIDS (2008) Redefining AIDS in Asia Crafting and effec-tive response Report of the Commission on AIDS in IndiaDelhi Commission on AIDS in Asia

World Health Organisation (2013) Consolidated guidelines onthe use of antiretroviral drugs for treating and preventingHIV infection Recommendations for a public healthapproach Retrieved from httpwwwwhointhivpubguidelinesarv2013downloaden

Zhang L Chow E P Jahn H J Kraemer A amp Wilson DP (2013) High HIV prevalence and risk of infection amongrural-to-urban migrants in various migration stages inChina A systematic review and meta-analysis (1537ndash4521(Electronic))

AIDS CARE 1423

Dow

nloa

ded

by [

Impe

rial

Col

lege

Lon

don

Lib

rary

] at

08

37 1

7 M

ay 2

016

  • Abstract
  • Introduction
  • Methods
  • Results
    • Mens journeys of discovery
    • Womens journeys of discovery
      • Discussion
      • Notes
      • Acknowledgements
      • Disclosure statement
      • References