In what ways do community groups support optimal access and adherence to antiretroviral treatment in Zimbabwe?

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In what ways do community groups support optimal access and adherence to antiretroviral treatment in Zimbabwe?
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  In what ways do communities support optimalantiretroviral treatment in Zimbabwe? K. SCOTT 1* , C. CAMPBELL 2 , C. MADANHIRE 3 , M. SKOVDAL 4 ,C. NYAMUKAPA 3,5 and S. GREGSON 3,5 1 Social and Behavioral Interventions, Department of International Health, Johns Hopkins BloombergSchool of Public Health, Room E5533, 615 North Wolfe Street, Baltimore, MD 21205, USA, 2  Institute of Social Psychology, London School of Economics and Political Science, London, UK, 3 Biomedical Research and Training Institute, Harare, Zimbabwe, 4 The Department of Health Promotion andDevelopment, University of Bergen, Bergen, Norway and 5 School of Public Health, Imperial College,London, UK *Corresponding author. E-mail: kerry.e.scott@gmail.com or keescott@jhsph.edu SUMMARY Little research has been conducted on how pre-existingindigenous community resources, especially social net-works, affect the success of externally imposed HIV interventions. Antiretroviral treatment (ART), an exter-nally initiated biomedical intervention, is being rolledout across sub-Saharan Africa. Understanding the waysin which community networks are working to facilitateoptimal ART access and adherence will enable policy-makers to better engage with and bolster these pre-exist-ing resources. We conducted 67 interviews and eight  focus group discussions with 127 people from three key population groups in Manicaland, eastern Zimbabwe:healthcare workers, adults on ART and carers of chil-dren on ART. We also observed over 100 h of HIV treatment sites at local clinics and hospitals. Our re- search sought to determine how indigenous resourceswere enabling people to achieve optimal ART accessand adherence. We analysed data transcripts using the-matic network technique, coding references to supportivecommunity networks that enable local people to achieve ART access and adherence. People on ART or carersof children on ART in Zimbabwe report drawing support from a variety of social networks that enablethem to overcome many obstacles to adherence. Key support networks include: HIV groups; food andincome support networks; home-based care, church andwomen’s groups; family networks; and relationshipswith healthcare providers. More attention to the commu-nity context in which HIV initiatives occur will helpensure that interventions work with and benefit from pre-existing social capital. Key words : antiretroviral treatment; social capital; community groups; Zimbabwe INTRODUCTION: COMMUNITYMOBILIZATION AND THE RESPONSETO HIV HIV is a global health issue having the greatestimpact on sub-Saharan Africa. With the growingaccessibility of antiretroviral treatment (ART),attention is increasingly focused on how accessand adherence to ART can be optimized, particu-larly in low-resource settings. Traditionally,donor-driven community programmes have takenthe form of top down interventions imposed oncommunities by outside agencies. Little attentionhas been given to pre-existing indigenous commu-nity resources, especially social networks (such associal clubs, relationships between healthcare Health Promotion Internationaldoi:10.1093/heapro/dat014 # The Author (2013). Published by Oxford University Press.This is an Open Access article distributed under the terms of the Creative Commons AttributionLicense (http://creativecommons.org/licenses/by-nc/3.0/), which permits non-commercial use,distribution, and reproduction in any medium, provided the srcinal work is properly cited. For commercial re-use, please contact journals.permissions@oup.com. Page 1 of 10   Health Promotion International Advance Access published March 15, 2013   b  y g u e  s  t   onM a r  c h 1  6  ,2  0 1  3 h  t   t   p :  /   /  h  e  a  pr  o . oxf   or  d  j   o ur n a l   s  . or  g /  D o wnl   o a  d  e  d f  r  om  worker and patients and family or neighbourhoodconnections). These community resources can beviewed both as positive social capital in their ownright, and as having the potential to strengthenexternally initiated programmes. More attentionto the community context in which HIV preven-tion, treatment and impact mitigation effortsoccur will help ensure that new forms of HIVsupport work with and benefit from pre-existingindigenous social capital.The authors of this paper had the opportunityto examine this link between social participa-tion and responses to HIV, particularly aroundaccess and adherence to ART, in 2009 inManicaland, an eastern province of Zimbabwe.Our qualitative research explored indigenousresponses to HIV and local facilitators of suc-cessful ART access and adherence.This paper presents our findings fromManicaland, asking the following questions: (1)what indigenous resources in Manicalandpromote community-level HIV competence? (2)What role do they play in facilitating the successof external interventions, specifically optimalaccess and adherence to ART? We focus on therole of indigenous community resources in termsof (a) groups facilitated by NGOs and funders(e.g. support groups), (b) indigenous communitygroups (e.g. women’s groups), and (c) informalnetworks (e.g. neighbours, friends) and relation-ships (e.g. nurse-patient relationships). MANICALAND RESEARCH ONCOMMUNITY GROUPS AND ARTADHERENCE Our study took place over 2 months andinvolved over 100 h of ethnographic observationof treatment sites. We also conducted 67 inter-views and eight focus group discussions (FGDs)with 127 people from three key populationgroups: healthcare workers, adults on ART andcarers of children on ART (Table1).Ethical approval for the study was granted bythe Medical Research Council of Zimbabwe(Ref: A/681) and the Imperial College ResearchEthics Committee (Ref: ICREC_9_3_13). Context of research In 1980, Zimbabwe gained independence fromcolonial rule. The country underwent a periodof initial positive growth in GDP; free primaryeducation and improved healthcare serviceswere introduced in the 1980s (Richardson,2005). However, from 1999 onwards, thecountry has undergone political and economicturmoil, leading to GDP decline and hyperinfla-tion. This turmoil, coupled with the devastatingeffects of HIV/AIDS, has seen quality of lifedramatically decline, echoed in a decline of lifeexpectancy from 61 years in 1992 to 42 in 2010(WHO, 2010;ZCSO, 2007). Despite the highly challenging political andeconomic environment facing citizens,Zimbabwe is one of the first African countriesto show a declining HIV rate with the adultprevalence rate falling from a peak of 26.5% in1997 to 14.3% at most recent measure(ZMoHCW, 2009), attributed in part to reduc-tions in high-risk behaviour (Gregson et al  .,2010). While there have been antiretroviral(ARV) drugs in Zimbabwe since the early2000s, they were in short supply and prohibitive-ly expensive for most people. In the late 2000s,the government and partner aid organizationssucceeded in a massive scale up of ART. ByDecember 2009, 218589 people, about half of those in need, were on free ART through thepublic health sector (UNAIDS, 2012).The HIV rate in Manicaland is approximately20% (Gregson et al  ., 2010). Residents of theregion are primarily subsistence farmers orwork on large commercial mining and forestryestates. Most live in rural homesteads (com-pounds with several mud and thatch houses, apit-latrine and animal pens), often without elec-tricity. Many families have members working inmajor cities, some of whom send money back tothe rural areas. Poverty is a major challengeand many local people struggle to access ad-equate food and afford school fees for theirchildren. Table 1: Summary of study participants Participants Interviews FGDsTotal Male FemaleHealthcareworkers25 14 11 18 1Adults onART62 30 32 28 4Carers of children40 0 40 21 3Total 127 44 83 67 8 Page 2 of 10 K. Scott  et al.   b  y g u e  s  t   onM a r  c h 1  6  ,2  0 1  3 h  t   t   p :  /   /  h  e  a  pr  o . oxf   or  d  j   o ur n a l   s  . or  g /  D o wnl   o a  d  e  d f  r  om  Research methodology Adults on ART and carers of children on ARTwere sampled using snowball, opportunistic andtypical case sampling. Snowball samplinginvolved inviting openly HIV-positive commu-nity members already known to the researchersthrough previous work to ask their peers to par-ticipate. Opportunistic sampling involved self-selected informants who approached theresearchers asking to be interviewed becausethey had heard about the project. Typical casesampling involved approaching adults on ARTor carers of children on ART as they visitedhospital or clinic sites and asking them if theywould like to participate. We accessed health-care workers (nurses, HIV counsellors, pharma-cists and a clerk) by first attaining permissionto interview staff and observe hospital sitesfrom the doctor or nurse in charge. We thenasked the staff working most closely withpeople on antiretroviral care if they would liketo participate.Researchers’ requests for interviews wereonly refused in one case, by an ART patientwho cited time limitations. Topic guidesexplored changing perceptions of HIV, socialsupport and ways of coping with HIV and ART,issues surrounding treatment adherence andexperiences at the health care centre. All inter-views and focus groups were guided by a looseframework of subject-based questions to elicitrich in-depth responses about the contextualfactors that facilitate or hinder optimal accessand adherence to ART. Questions varied de-pending on the interviewee (i.e. nurses, peopleon ART and carers of HIV-positive childrenwere asked somewhat different questions) butgenerally included: ‘What are some things thatprevent people from accessing care at theclinic?’ ‘What encourages people to be testedfor HIV and to visit the clinic?’ ‘What helpspeople on ART take their pills when needed?’‘Can you tell me about a time when someoneyou know was unable to adhere to ART?’ and‘Tell me about a positive/negative experience atthe clinic.’ All audio files were translated intoEnglish and transcribed by trained researchers.To thank the informants, focus group partici-pants were given soap, and interviewees weregiven a t-shirt.Over 100 h of ethnographic observation wereconducted at the health centres, observing inter-actions as HIV patients waited for the doctor,paid hospital fees, visited the pharmacy andwaited for nurses to review their progress onART and prescribe refills of their ARVs.Researchers did not observe private interactionsbetween patients and staff. Observation focusedon hospital activity, including interactionsbetween patients and staff and the arrangementof people in hospital spaces. Extensive detailednotes were taken by the researchers throughoutthe hours of observation, recording what oc-curred, how people were organized within theclinic space and comments made about the ex-perience. These notes were included in thebody of text data (along with the focus groupand interview transcripts) for analysis.Data were collected by three Shona-speakingfieldworkers and a fourth researcher workingwith an interpreter. We analysed the data tran-scripts using the thematic network technique(Attride-Stirling, 2001). This technique involvedcarefully reading and then coding text sectionsaccording to our research interest in indigenouscommunity networks that support ART accessand adherence. OBSTACLES TO ART ACCESS ANDADHERENCE Before discussing the various forms of socialparticipation helping people access and adhereto ART, we briefly describe the various obsta-cles facing those in need of ART in Manicaland(see alsoSkovdal, 2011a,c,d). Poverty is a key constraint on adherence, hin-dering patients’ ability to access the clinic andtake their drugs in many ways, particularlyaround a lack of food and money. Somepatients discontinued their treatment becausethey struggled to find nutritious food to accom-pany their treatment, witnessed little progressand experienced the discomfort that comes withtaking powerful drugs on an empty stomach.Patients also struggled to meet the transportcosts and hospital fees associated with attendingmonthly clinic reviews and picking up theirsupply of antiretroviral drugs. Medicine otherthan antiretrovirals, such as drugs to treat op-portunistic infections, must be purchased.Patients who had to take on extra work ortravel in search of support from familymembers struggled to attend appointments andtake their pills on time. Community support for optimal ART  Page 3 of 10   b  y g u e  s  t   onM a r  c h 1  6  ,2  0 1  3 h  t   t   p :  /   /  h  e  a  pr  o . oxf   or  d  j   o ur n a l   s  . or  g /  D o wnl   o a  d  e  d f  r  om  At an institutional level, some churches andaspects of the health services available pre-sented barriers to optimal ART adherence. TheApostolic Church was often cited for ignoringthe impact of AIDS and discouraging its fol-lowers from taking medicines. Health serviceswere constrained by staff shortages, resourceconstraints, poor management, difficulties withrepairing dysfunctional equipment, power cutsand limited access to water.Beyond material and institutional constraints,social norms and stigma also created challenges.Men in particular saw HIV as a threat to theiridentity and exhibited a profound fear of thedisease. Sickness and hospital visits were asso-ciated with weakness and the loss of capacity toprovide for the family. Men also feared thattesting positive would represent them as irre-sponsible and promiscuous. This fear led themto avoid visiting the clinic for testing and treat-ment. Notions of masculinity and associatedmale fear of HIV were also reported to causesome men to undermine women’s treatment(seeSkovdal et al. , 2011a). Women were oftendependent on their husbands for financialresources and were unable to access treatmentif their husbands did not support them. Manywomen felt unable to disclose their HIV statusto their husbands, forcing them to take theirpills in secret and act without a supportive treat-ment partner. There were some reports of menrefusing to let their wives take ARVs or stealingthe drugs for their own treatment. Women alsoreported feeling vulnerable to re-infectionbecause of their husband’s extra-marital rela-tionships and being stopped from attendingclinic or support group meetings because hus-bands feared being associated with HIV.People repeatedly spoke of stigma in thegeneral community as a key obstacle to effectiveHIV/AIDS management. HIV’s sexually trans-mitted nature links a positive HIV status todeep shame and being labelled ‘promiscuous’.The fear of being considered promiscuous is areason many people choose not to know orconfirm their HIV status and are hesitant toaccess treatment openly. SOCIAL GROUPS THAT FACILITATEACCESS AND ADHERENCE TO ART These dimensions of context can all presentobstacles to ART access and adherence.However, our research found that various formsof community support helped people overcomethese barriers and achieve high levels of ARTadherence. Formal health-related groups and interventions Formal groups facilitated or supported byNGOs and outside funders include HIVsupport groups (often linked to clinics),NGO-linked community HIV education andNGO financial and food aid networks. Thesegroups played a major role in facilitating ARTaccess and adherence. HIV support groups HIV support groups were the most frequentlyand emphatically discussed form of socialsupport in interviews and focus groups withpeople on ART. HIV support groups, usuallyorganized by clinics or NGOs, were mentionedrepeatedly as a major facilitator of optimaltreatment. People spoke passionately of theirHIV support group as central to their ability tocope with life as an HIV-positive person andART adherent. Support groups provided peoplewith an opportunity to speak openly with othersin the same situation. They offered a vital con-nection to others and a place to share problemsand gain confidence to cope with challenges:‘Every time when I am feeling low, I rely on thesupport group. I talk about it with my collea-gues in the support group’ (TE, female, ARTpatient).Interviewees and focus group participantsdiscussed how support groups encouraged themto keep attending clinic appointments: ‘ . . . People still need a lot of encouragement andpush. As members of support groups we keepencouraging each other not to miss our reviews’(AL, female, ART patient). Rather than sayingthe support group reminds people to go to theclinic, FGD participants like TS (above) saidthat the support group encourages people toremember to go to the clinic. The issue is notpresented as people actually forgetting to go tothe clinic. Instead, it is discussed as an issue of people losing the encouragement and sense of hope necessary to ‘push’ them into continuingto attend appointments. This difference high-lights the role of social supports to create afacilitating environment in which people canovercome the many barriers to ART adherence. Page 4 of 10 K. Scott  et al.   b  y g u e  s  t   onM a r  c h 1  6  ,2  0 1  3 h  t   t   p :  /   /  h  e  a  pr  o . oxf   or  d  j   o ur n a l   s  . or  g /  D o wnl   o a  d  e  d f  r  om  Practical information is also exchanged insupport groups, such as recommendations onusing condoms to avoid re-infection, when tovisit the clinic and tips on how to adhere cor-rectly (such as sending one another’s childrento remind each other, getting an alarmed watchand carrying pills to work in case of unexpectedovertime). Support groups can also providepeople living with HIV/AIDS (PLWHA) accessto income generating projects, as mentionedbelow: We are also happy that HIV positive people hereare organized and we have our support group. It isso encouraging to have an arrangement wherebywe meet on a regular basis as people living withHIV/AIDS. There are prospects that we can domore income generating projects. (OT, female,ART patient) While financial support was considered desir-able, our FGD and interview participants weremore emphatic about the emotional and socialelements of support groups. The followingquotation highlights the types of positive emo-tional and social exchanges that can occur inHIV support groups. When asked what shewould say to someone newly diagnosed as HIVpositive, MA replied: I will tell the person that I have been through thesame road and I have been able to get advice andcounseling from others at the support group. I willadvise the person to join the support group. I willdiscuss with the person all the fears I used to haveand how I overcame them. I will also advise themto go to the clinic every time they don’t feel good.(MA, female, ART patient) Support groups offer a range of essential sup-ports, including: talking to others undergoingthe same process, discussing fears, exchangingpractical advice about going to the clinic,rebuilding a shattered sense of self, acceptingone’s status and raising hope among newly diag-nosed people for ongoing health through treat-ment. Members of support groups also reporteda desire to reach out beyond their group todiscuss HIV with the larger community: ‘I thinkas members of support groups, we shouldalways educate others we meet in the commu-nity about the goodness of going for HIV tests’(TH, female, ART patient). This interest inreaching out to the general community high-lights that support groups have enabledmembers to resist stigma to an extent that theycan talk publicly about HIV. Members of support groups expressed a positive sense of self, speaking of their groups as having a re-sponsibility to help others in the community. NGO-linked community education HIV education programmes in the area had anindirect link to facilitating ART adherence.Peer education often focused on clearly outlin-ing the ways in which HIV spreads, ensuringfamilies living with an HIV-positive person thatregular interaction would not lead to infection.Education programmes can build awareness of the treatment options available, encouragingmore people to get tested for HIV earlier. Inthe following, a woman on ART expresses herapproval of education campaigns, linking educa-tion to early engagement with healthcareservices: I think NGOs that deal with HIV/AIDS issuesshould continue the good work . . . Continue visit-ing and talking to people . . . People should be edu-cated that it’s better to go to hospital before theyare bed ridden. I think information campaignsshould continue. (MA, female, ART patient) Healthcare workers expressed faith that NGOeducation programmes could increase supportavailable for PLWHA and their carers, especial-ly elderly grandparents caring for children onART. In the following quotation, a nurse illus-trates how indigenous local volunteer groupsaccessed NGO support to run community edu-cation programs aimed at building supportiveenvironments for children on ART and theircarers: We have talked to the home based care volunteersabout the problem [of grandparents struggling tosupport their grandchildren on ART]. They thenapproached [an NGO] for assistance to facilitate aworkshop. They educated the community thatthey should try to build trust with grannieswho are caring for orphans. In the event thatthe granny volunteers to disclose the status of thechild then the community can also becomethe child’s treatment partner.’ (RS, female, nurse) The network of actors discussed by RS (nurses,local volunteer groups, an NGO, community,grandparents caring for children on ART) high-lights the need to engage many groups to buildsupportive environments for people on ART. Community support for optimal ART  Page 5 of 10   b  y g u e  s  t   onM a r  c h 1  6  ,2  0 1  3 h  t   t   p :  /   /  h  e  a  pr  o . oxf   or  d  j   o ur n a l   s  . or  g /  D o wnl   o a  d  e  d f  r  om
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