Navigating multiple sources of healing in the context of HIV/AIDS and wide availability of antiretroviral treatment: a qualitative study of community participants’ perceptions and experiences in rural South Africa

Background: South Africa introduced the world’s largest antiretroviral treatment (ART) program in 2004 and since 2016 the Department of Health implemented a universal Treatment as Prevention (TasP) strategy. However, some studies have shown that increasing the availability of ART is insufficient for the comprehensive treatment of HIV, since many people still use traditional health practitioners (THPs) to avoid being identified as HIV positive, and for reasons unrelated to HIV/AIDS. This qualitative study explored the factors influencing how both HIV-negative and HIV-positive people choose amongst multiple sources of healing and how they engage with them, in the context of HIV/AIDS and wide availability of ART. Methods: Data were collected as part of a larger TasP trial at the Africa Health Research Institute, KwaZulu-Natal. Repeat in-depth individual interviews were conducted with 10 participants. Repeat group discussions were conducted with 42 participants. Group discussion data were triangulated using community walks and photo-voice techniques to give more insight into the perceptions of community members. All data were collected over 18 months. Thematic analysis was used to analyze participants’ narratives from both individual interviews and group discussions. Findings: In the context of HIV/AIDS and wide availability of ART, use of biomedical and traditional healing systems seemed to be common in this locality. People used THPs to meet family expectations, particularly those of authoritative heads of households such as parents or grandparents. Most participants believed that THPs could address specific types of illnesses, especially those understood to be spiritually caused and which could not be addressed or cured by biomedical practitioners. However, it was not easy for participants to separate some spiritually caused illnesses from biological illnesses in the context of HIV/AIDS. These data demonstrate that in this context, the use of THPs continues regardless of the wide availability of ART. To meet the health care needs of those patients requiring a health care system which combines biomedical and traditional approaches, collaboration and integration of biomedical and traditional health care should be considered

Traditional health practitioners’ management of HIV/AIDS in rural South Africa in the era of widespread antiretroviral therapy

Background: Traditional health practitioners (THPs) have been identified as a key local resource in the fight against HIV/AIDS in South Africa. However, their approaches to the treatment of people living with HIV (PLHIV) have been met with skepticism by some biomedical practitioners amidst increasing access to antiretroviral treatment (ART). In light of this ambivalence, this study aims to document and identify treatment approaches of THPs to the management of illness among PLHIV in the current era of widespread access to ART. Methods: The study was conducted as part of a larger trial of treatment as prevention (TasP) in rural northern Kwa-Zulu Natal, intended to treat PLHIV regardless of CD4 count. Nine THPs were enrolled using purposive and snowballing techniques. Repeat group discussions, triangulated with community walks and photo-voice techniques were conducted. A thematic analysis approach was used to analyse the data. Results: Eight of the nine THPs had received training in biomedical aspects of HIV. THPs showed a multilayered decision-making process in managing illness among PLHIV, influenced by attributes and choices of the THPs. THPs assessed and managed illness among PLHIV based on THP training in HIV/AIDS, THP type, as well as knowledge and experience in the traditional healing practice. Management of illness depended on the patients’ report of their HIV status or willingness to test for HIV. Conclusions: THPs’ approaches to illness in PLHIV appear to be shifting in light of increasing exposure to HIV/AIDS-related information. Importantly, disclosure of HIV status plays a major role in THPs’ management of illness among PLHIV, as well as linkage to HIV testing and care for their patients. Therefore, THPs can potentially enhance further success of antiretroviral therapy for PLHIV when HIV status is known

Depression among pregnant women testing for HIV in rural South Africa

Thesis (PhD)--University of Stellenbosch, 2011.ENGLISH ABSTRACT: Pregnancy is a vulnerable time in settings such as sub-Saharan Africa, and is associated with exposure to a multitude of physiological, social and psychological risks. High HIV prevalence, and the fact that many women will test for HIV for the first time during their pregnancy, has raised concern about women‘s psychological health during pregnancy. Depression during the antenatal period is of public health concern as it has been shown to be associated with poorer foetal and delivery outcomes, risky behaviours, and poorer uptake of antenatal care. Antenatal depression is a predictor of postnatal depression, and postnatal depression has been associated with poor maternal sensitivity and attachment in mothers which is known to result in increased behavioural and developmental difficulties in children. The aim of this research was to provide a clear, in depth and culturally sensitive understanding of the manifestation of depression in pregnant women in a rural area with high HIV prevalence in South Africa. The research method included a diagnostic assessment of depression in 109 women in their third trimester of pregnancy, and an in-depth qualitative examination of the contextual framework within which HIV testing and depression are experienced with a sub-sample of 56 women. The quantitative results demonstrated that the prevalence of antenatal depression was high (46.7%), with close to half of the women being diagnosed with depression. Presentations of depression most frequently included disturbances in mood, loss of interest and suicide ideation. Symptoms which overlap with common side effects of pregnancy such as loss of energy and weight change did not result in an overestimation of depression. Likewise, very little evidence of the somatisation of depression, or particular cultural barriers to the diagnosis of depression based on DSM-IV criteria was found. Rates of suicide ideation were high and equally common among HIV positive as HIV negative women. Factors significantly associated with depression included living within a family homestead, access to a regular source of income and practical support from a partner. Both income and partner support had a negative association with depression. Living away from a family or parental home had a positive association with depression. The results showed that the Edinburgh Postnatal Depression Scale (EPDS) was effective in identifying depression and that a shorter three item version was as effective as longer versions. A positive score for depressed mood on the EPDS was significantly associated with HIV, suggesting that the EPDS is a good screening tool for elevated psychological risks among HIV positive women post HIV testing. Qualitative results showed that having an unsupportive partner and the occurrence of relationship or familial conflict played an important role in the development of emotional distress during pregnancy and resulted in a high number of unwanted pregnancies. Partner and familial conflict was intertwined with cultural practices which govern the acceptability of childbearing among unmarried women and the social recognition of partnerships and paternal responsibilities. Testing for HIV was considered a stressful life event for all women regardless of their HIV status and was a particularly negative life event for women who tested HIV positive or for women who had concerns over partner infidelity. Disclosure among HIV positive women frequently lead to increased partnership conflict. Qualitative findings suggested that depression and emotional distress after HIV testing did interfere with women‘s ability to engage with prevention messages. Women who were coping well with learning their HIV positive status had high levels of family disclosure and subsequent family support in common. The implication of this research is that it is important that public health programmes screen for depression among childbearing women. These data suggests that a shorter three item version of the EPDS along with screening for partner and family support or conflict would effectively detect most women at high risk for depression. Likewise, public health interventions for women with depression which are implemented in primary health care facilities and in isolation of the partnership and familial context within which depression occurs are not likely to be effective. Further research is needed to establish the precise prevalence of antenatal and postnatal depression in women at high risk for HIV; to validate the effectiveness of a shorter screening tool in resource limited settings; and to establish risk and protective factors, and trimester specific risks which could inform the design of cost effective interventions in poorly resourced settings.AFRIKAANSE OPSOMMING: Swangerskap in Afrika, suid van die Sahara, is ʼn kwesbare tydperk met blootstelling aan ʼn menigte fisiologiese, sosiale en sielkundige risiko‘s. Die hoë voorkoms van HIV en die feit dat baie vrouens gedurende swangerskap vir die eerste keer vir HIV wil toets, het ‗n besorgdheid oor vrouens se sielkundige gesondheid gedurende swangerskap laat ontstaan. Depressie gedurende die voorgeboortelike periode is van belang vir publieke gesondheid, want daar is bewyse wat dui op ‗n verband tussen depressie en swakker fetale en geboorte resultate, riskante gedrag en verminderde gebruik van voorgeboortelike sorg . Voorgeboortelike depressie is ʼn indikasie van moontlike nageboortelike depressie en nageboortelike depressie word geassosieer met swak moederlike sensitiwiteit en die gebrekkige vorming van ‗n band tussen moeder en kind; wat reeds bewys is om te lei tot verhoogde gedrags- en ontwikkelingsprobleme in kinders. Die doel van hierdie navorsing was om ʼn duidelike, indiepte en kulturele-sensitiewe begrip van die manifestasie van depressie in swanger vroue in ʼn landelike omgewing met hoë HIV voorkoms in Suid Afrika te verkry. Die navorsingsmetode sluit in ʼn simptomatiese beraming van depressie by 109 vroue in hul derde trimester van swangerskap en ʼn indiepte kwalitatiewe ondersoek na die kontekstuele raamwerk waarbinne HIV toetse en depressie ondervind word met ʼn sub-steekproef van 56 vrouens. Die bevinding was dat die voorkoms van voorgeboortelike depressie hoog was, 46.7 %, met feitlik die helfte van die vrouens wat met depressie gediagnoseer is. In die meeste gevalle het die voorkoms van depressie gepaard gegaan met ʼn verandering in gemoedstoestand, ʼn verlies aan belangstelling en selfmoordgedagtes. Simptome wat ooreenstem met algemene newe-effekte van swangerskap, soos verlies aan energie en verandering in gewig, het nie bygedra tot ʼn oorberekening van depressie nie. Soortgelyk is baie min bewyse gevind dat somatosasie van depressie, of spesifieke kulturele grense, tot die diagnose van depressie gebaseer op DSM-IVkriteria bydra. Die oorweging van selfmoord was hoog en algemeen tussen beide HIV-positiewe en HIV-negatiewe vouens. Faktore wat aansienlik met depressie geassosieer word, sluit in om in ʼn familiegroep te bly, toegang tot ʼn vaste bron van inkomste en die praktiese ondersteuning van ʼn lewensmaat. Beide inkomste en die ondersteuning van ʼn lewensmaat het ʼn negatiewe verbintenis met depressive. Om nie by familie of in ʼn ouerhuis te bly nie het ʼn positiewe assosiasie met depressive. Alhoewel HIV-status verband hou met depressie, was dit nie uitermate die geval nie, alhoewel daar ʼn gebrek aan statistiese kragdoeltreffendheid was om die effek van HIV vas te stel, gegee die beperkte grootte van die steekproef. Die resultate het getoon dat die EPDS graderingsinstrument effektief was om depressie te identifiseer en dat ʼn korter driepunt weergawe daarvan net so effektief was soos die langer weergawe. ʼn Positiewe telling vir ʼn depressiewe gemoedstoestand op die EPDS het ʼn betekenisvolle assosiasie met HIV en dui daarop dat die EPDS ʼn goeie graderingsinstrument is vir verhoogde sielkundige risiko by HIV-positiewe vrouens, selfs al is HIV-positiewe vrouens in dié steekproef statistieksgewys nie meer geneig tot depressie as HIV-negatiewe vrouens nie. Kwalitatiewe resultate toon dat ʼn lewensmaat wat nie ondersteunend is nie en die voorkoms van verhoudings- of familiekonflik ʼn belangrike rol speel in die ontwikkeling van emosionele angs gedurende swangerskap en dit het gelei tot ʼn groot aantal ongewenste swangerskappe. Konflik met ʼn lewensmaat en met familie was verweefd met kulturele gebruike wat die aanvaarbaarheid van geboortes onder ongetroude vrouens beheer en die sosiale erkenning van verhoudings en die vader se verantwoordelikhede. ʼn HIV-toets is as ʼn stresvolle lewensgebeurtenis beskou deur alle vroue, ongeag van hulle HIV-status en was ʼn besondere negatiewe lewensgebeurtenis vir vroue wat HIV-positief getoets het of vir vroue wat bekommerd was oor hulle lewensmaats se getrouheid. Onthulling van die HIV-status van positiewe vrouens het gereeld tot verhoogde konflik in verhoudings gelei. Kwalitatiewe bevindings dui daarop dat depressie en emosionele angs na ʼn HIV-toets inmeng met ʼn vrou se vermoë om ag te slaan op voorkomingsboodskappe. Vroue wat die kennis van hulle HIV-positiewe status goed hanteer het, het hoë vlakke van bekendmaking van hulle status en die ondersteuning van hulle familie in gemeen. Die implikasie van die navorsing is dat dit belangrik is vir publieke gesondheidsorgprogramme om te toets vir depressie onder swanger vroue. Die resultate dui daarop dat ʼn korter driepunt weergawe van die EPDS, saam met ʼn ondersoek na die ondersteuning van of konflik met ʼn lewensmaat en familie, effektief kan wees om vroue met ʼn hoë risiko vir depressie te identifiseer. Soortgelyk, publieke gesondheidsingryping in primêre gesondheidsorg fasiliteite vir vroue met depressie wat in isolasie van die lewensmaat en familie konteks, waar depressie voorkom geadministreer word, is onwaarskynlik om te slaag. Bevindings onderskryf die belangrikheid van ondersteuning vir die familie om effektief te kan reageer en herstel van stresvolle faktore soos onbeplande swangerskappe en HIV-diagnose, in ʼn konteks wat swaar deur HIV geaffekteer word, aangesien dit ʼn voorkomende effek op depressie kan hê. Verdere navorsing is nodig om die presiese voorkoms van voorgeboortelike en nageboortelike depressie in vrouens met ʼn hoë blootstelling aan HIV vas te stel; om die sukses van ʼn korter graderingsinstrument in arm omgewings te staaf; en om die risiko en beskermende faktore vas te stel en trimester spesifieke risiko‘s wat die ontwerp van ʼn koste-effektiewe ingryping in gebiede met ontoereikende hulpbronne kan beïnvloed

The Amagugu intervention: a conceptual framework for increasing HIV disclosure and parent-led communication about health among HIV-Infected parents with HIV-uninfected primary school-aged children

Advances in access to HIV prevention and treatment have reduced vertical transmission of HIV, with most children born to HIV-infected parents being HIV-uninfected themselves. A major challenge that HIV-infected parents face is disclosure of their HIV status to their predominantly HIV-uninfected children. Their children enter middle childhood and early adolescence facing many challenges associated with parental illness and hospitalization, often exacerbated by stigma and a lack of access to health education and support. Increasingly, evidence suggests that primary school-aged children have the developmental capacity to grasp concepts of health and illness, including HIV, and that in the absence of parent-led communication and education about these issues, HIV-exposed children may be at increased risk of psychological and social problems. The Amagugu intervention is a six-session home-based intervention, delivered by lay counselors, which aims to increase parenting capacity to disclose their HIV status and offer health education to their primary school-aged children. The intervention includes information and activities on disclosure, health care engagement, and custody planning. An uncontrolled pre–post-evaluation study with 281 families showed that the intervention was feasible, acceptable, and effective in increasing maternal disclosure. The aim of this paper is to describe the conceptual model of the Amagugu intervention, as developed post-evaluation, showing the proposed pathways of risk that Amagugu aims to disrupt through its intervention targets, mechanisms, and activities; and to present a summary of results from the large-scale evaluation study of Amagugu to demonstrate the acceptability and feasibility of the intervention model. This relatively low-intensity home-based intervention led to: increased HIV disclosure to children, improvements in mental health for mother and child, and improved health care engagement and custody planning for the child. The intervention model demonstrates the potential for disclosure interventions to include pre-adolescent HIV education and prevention for primary school-aged children

The role of traditional health practitioners in rural KwaZulu-Natal, South Africa: generic or mode specific?

Background Traditional health practitioners (THPs) play a vital role in the health care of the majority of the South African population and elsewhere on the African continent. However, many studies have challenged the role of THPs in health care. Concerns raised in the literature include the rationale, safety and effectiveness of traditional health practices and methods, as well as what informs them. This paper explores the processes followed in becoming a traditional healer and how these processes are related to THP roles. Methods A qualitative research design was adopted, using four repeat group discussions with nine THPs, as part of a larger qualitative study conducted within the HIV Treatment as Prevention trial in rural South Africa. THPs were sampled through the local THP association and snowballing techniques. Data collection approaches included photo-voice and community walks. The role identity theory and content analysis were used to explore the data following transcription and translation. Results In the context of rural Northern KwaZulu-Natal, three types of THPs were identified: 1) Isangoma (diviner); 2) Inyanga (one who focuses on traditional medical remedies) and 3) Umthandazi (faith healer). Findings revealed that THPs are called by ancestors to become healers and/or go through an intensive process of learning about traditional medicines including plant, animal or mineral substances to provide health care. Some THPs identified themselves primarily as one type of healer, while most occupied multiple healing categories, that is, they practiced across different healing types. Our study also demonstrates that THPs fulfil roles that are not specific to the type of healer they are, these include services that go beyond the uses of herbs for physical illnesses or divination. Conclusions THPs serve roles which include, but are not limited to, being custodians of traditional African religion and customs, educators about culture, counsellors, mediators and spiritual protectors. THPs’ mode specific roles are influenced by the processes by which they become healers. However, whichever type of healer they identified as, most THPs used similar, generic methods and practices to focus on the physical, spiritual, cultural, psychological, emotional and social elements of illness

Testing the acceptability and feasibility of video observational methodology to measure parent-adolescent communication and interaction

BackgroundExisting research has shown that the parent-adolescent relationship and its associated communication and interaction styles are important for adolescent development and outcomes. Measuring parent-adolescent communication and interaction using self-report methods has substantial research limitations. Video observational methodologies offer a novel and more objective approach to measuring parent-adolescent communication and interaction from the point of view of participants. This study aims to explore the feasibility and acceptability of this methodology, and analysis using automated coding software in an urbanized context.MethodsThis study recruited parent-adolescent pairs in Soweto, South Africa which included 11–15-year-old adolescents and their biological parents. Parent-adolescent communication and interactions were measured using novel video observational portable head cameras called “Teencams”. Feasibility was evaluated by testing three observational game tasks (Matching pairs card game, Jenga and Charades) to stimulate communication and interaction between 16 parent-adolescent pairs, and the Teencam's ability to record video and audio content. Acceptability was explored using one-on-one interviews with the parents (n = 14), on whether they found the Teencam comfortable to wear, whether the parents believed their adolescents acted naturally, and which observational game tasks were feasible during their interactions. The videos were analysed using automated coding software called FaceReader which detects and codes basic facial expressions.ResultsThe Teencam methodology was found to be feasible and acceptable amongst parent-adolescent pairs in Soweto, South Africa. The Matching pairs card game stimulated excellent interaction and communication with good video and audio quality. Some feasibility limitations were identified in the operations (switching on/off and starting recording), the ability of the device to cope with the movement of the participants, and the lighting conditions of the room, all of which resulted in poor coding and analytic output from FaceReader. Refinements and adjustments were made to the methodological protocol by improving the head cameras and lighting conditions and refining the Matching pairs card game, which resulted in improved analytic output from FaceReader.ConclusionBased on these findings, a methodological protocol was developed to measure parent-adolescent interaction and communication in an urban setting. The unique contribution of this research lies in its potential to lead to improved methodologies for measuring parent-adolescent communication and interactions

Communication about HIV and death: Maternal reports of primary school-aged children's questions after maternal HIV disclosure in rural South Africa

Introduction: Children's understanding of HIV and death in epidemic regions is under-researched. We investigated children's death-related questions post maternal HIV-disclosure. Secondary aims examined characteristics associated with death-related questions and consequences for children's mental health. Methods: HIV-infected mothers (N = 281) were supported to disclose their HIV status to their children (6–10 years) in an uncontrolled pre-post intervention evaluation. Children's questions post-disclosure were collected by maternal report, 1–2 weeks post-disclosure. 61/281 children asked 88 death-related questions, which were analysed qualitatively. Logistic regression analyses examined characteristics associated with death-related questions. Using the parent-report Child Behaviour Checklist (CBCL), linear regression analysis examined differences in total CBCL problems by group, controlling for baseline. Results: Children's questions were grouped into three themes: ‘threats’; ‘implications’ and ‘clarifications’. Children were most concerned about the threat of death, mother's survival, and prior family deaths. In multivariate analysis variables significantly associated with asking death-related questions included an absence of regular remittance to the mother (AOR 0.25 [CI 0.10, 0.59] p = 0.002), mother reporting the child's initial reaction to disclosure being “frightened” (AOR 6.57 [CI 2.75, 15.70] p=<0.001) and level of disclosure (full/partial) to the child (AOR 2.55 [CI 1.28, 5.06] p = 0.008). Controlling for significant variables and baseline, all children showed improvements on the CBCL post-intervention; with no significant differences on total problems scores post-intervention (β -0.096 SE1.366 t = -0.07 p = 0.944). Discussion: The content of questions children asked following disclosure indicate some understanding of HIV and, for almost a third of children, its potential consequence for parental death. Level of maternal disclosure and stability of financial support to the family may facilitate or inhibit discussions about death post-disclosure. Communication about death did not have immediate negative consequences on child behaviour according to maternal report. Conclusion: In sub-Saharan Africa, given exposure to death at young ages, meeting children's informational needs could increase their resilience

Living with HIV, disclosure patterns and partnerships a decade after the introduction of HIV programmes in rural South Africa

Prevention of mother-to-child Transmission and HIV Treatment programmes were scaled-up in resource-constrained settings over a decade ago, but there is still much to be understood about women's experiences of living with HIV and their HIV disclosure patterns. This qualitative study explored women's experiences of living with HIV, 6–10 years after being diagnosed during pregnancy. The area has high HIV prevalence, and an established HIV treatment programme. Participants were enrolled in a larger intervention, “Amagugu”, that supported women (n = 281) to disclose their HIV status to their children. Post-intervention we conducted individual in-depth interviews with 20 randomly selected women, stratified by clinic catchment area, from the total sample. Interviews were entered into ATLAS.ti computer software for coding. Most women were living with their current sexual partner and half were still in a relationship with the child's biological father. Household exposure to HIV was high with the majority of women knowing at least one other HIV-infected adult in their household. Eighteen women had disclosed their HIV status to another person; nine had disclosed to their current partner first. Two main themes were identified in the analyses: living with HIV and the normalisation of HIV treatment at a family level; and the complexity of love relationships, in particular in long-term partnerships. A decade on, most women were living positively with HIV, accessing care, and reported experiencing little stigma. However, as HIV became normalised new challenges arose including concerns about access to quality care, and the need for family-centred care. Women's sexual choices and relationships were intertwined with feelings of love, loyalty and trust and the important supportive role played by partners and families was acknowledged, however, some aspects of living with HIV presented challenges including continuing to practise safe sex several years after HIV diagnosis

Taking HIV testing to families: designing a family-based intervention to facilitate HIV testing, disclosure and intergenerational communication

Introduction: Facility-based HIV testing does not capture many adults and children who are at risk of HIV in South Africa. This underscores the need to provide targeted, age-appropriate HIV testing for children, adolescents and adults who are not accessing health facilities. While home based counseling and testing has been succesfully delivered in multiple settings, it also often fails to engage adolescents. To date, the full potential for testing entire families and linking them to treatment has not been evaluated. Methods: The steps to expand a successful home-based counseling and testing model to a family-based counseling and testing approach in a high HIV prevalence context in rural South Africa are described. The primary aim of this family-based model is to increase uptake of HIV testing and linkage to care for all family members, through promoting family cohesion and intergenerational communication, increasing HIV disclosure in the family, and improving antiretroviral treatment uptake, adherence and retention. We discuss the three-phased research approach that led to the development of the family-based counseling and testing intervention. Results: The family-based intervention is designed with a maximum of five sessions, depending on the configuration of the family (young, mixed and older families). There is an optional additional session for high-risk or vulnerable family situations. These sessions encourage HIV testing of adults, children and adolescents and disclosure of HIV status. Families with adolescents receive an intensive training session on intergenerational communication, identified as the key causal pathway to improve testing, linkage to care, disclosure and reduced stigma for this group. The rationale for the focus on intergenerational communication is described in relation to our formative work as well as previous literature, and potential challenges with pilot testing the intervention are explored. Conclusion: This paper maps the process for adapting a novel and largely successful home-based counseling and testing intervention for use with families. Expanding the successful home-based counseling and testing model to capture children, adolescents and men could have significant impact if the pilot is successful and scaled-up

Evaluation of a Brief Intervention to Improve the Nursing Care of Young Children in a High HIV and AIDS Setting

The HIV epidemic in South Africa is putting great strain on health services, including the inpatient care of young children. Caregivers and young children (107 pairs) and 17 nurses participated in an intervention to improve the care of young children in hospital in a high HIV and AIDS setting. The intervention addressed caregiver expectations about admission and treatment, responsive feeding, coping with infant pain and distress, assistance with medical procedures, and preparation for discharge and home care. Following a preparatory and piloting phase, measures of nurse burnout, caregiver physical and emotional well-being, and caregiver-child interaction were made before and after intervention. No changes were found between before and after intervention on assessments of caregiver wellbeing. However, mothers in the postintervention phase rated nurses as more supportive; mother-child interaction during feeding was more relaxed and engaged, and babies were less socially withdrawn. While the intervention proved useful in improving certain outcomes for children and their caregivers, it did not address challenging hospital and ward administration or support needed by caregivers at home following discharge. To address the latter need, the intervention has been extended into the community through home-based palliative care and support