Envisioning enabling environments for young women with perinatal infections of Human Immunodeficiency Virus in Africa : a participatory creative new-materialist approach.
| dc.contributor.advisor | Hannes, Karin | en_ZA |
| dc.contributor.advisor | Young, Taryn | en_ZA |
| dc.contributor.author | Hendricks, Lynn Avril | en_ZA |
| dc.contributor.other | Stellenbosch University. Faculty of Medicine and Health Sciences. Dept. of Global Health. Health Systems and Public Health. | en_ZA |
| dc.date.accessioned | 2023-09-26T01:11:00Z | |
| dc.date.accessioned | 2024-01-08T13:13:55Z | |
| dc.date.available | 2023-09-26T01:11:00Z | |
| dc.date.available | 2024-01-08T13:13:55Z | |
| dc.date.issued | 2023-12 | |
| dc.description | Thesis (PhD)--Stellenbosch University, 2023. | en_ZA |
| dc.description.abstract | ENGLISH SUMMARY: Background: Targeted due to gender and age in South Africa, young women often must negotiate health and safety in their homes and communities – this is even more challenging for young women living with perinatal infections of Human Immunodeficiency Virus (YWLPHIV). Young people living with perinatal infections face a chronic disease, with treatment including adherence to lifelong Antiretroviral treatment (ART). We set out to learn more about young women perinatally infected with Human Immunodeficiency Virus (HIV) in Cape Town, their experience with HIV, how they negotiated adherence to ART regimens within their environments, and how environments could be enabled to support their adherence. Methods: This study used qualitative evidence synthesis (QES) and multisensory arts-based community participatory research methods, working together with six young women as allies. In phase 1, we synthesised the evidence landscape on adherence to ART. In phase 2, we conceptualised the Adherence Assemblage conceptual model of ART and the methodological approach of the third sphere for allyship. In phase 3, we co-explored with YWLPHIV their experiences and co-produced creative artworks and a research documentary, More than a pill. In phase 4, we focused on recommendations for enabling environments. Our multimodal approach included methods such as QES, artistic co-creations, body mapping, collaborative filmmaking, collecting material objects of meaning, community mapping, individual and group conversations including walking and driving interviews, journalling, multisensory home and clinic interviews, a research camp, and storytelling. Analytically, we used a new materialist lens to develop a new enabling environments framework from the innovative Adherence Assemblage model and applied analysis such as mega-aggregation framework synthesis, synthesis by storyboarding, creative synthesis, and thematic analysis. Results: Drawing on the findings of multiple types of qualitative data, which captured the perspectives of various role players, and amplified the voices of YWLPHIV, while considering the social-material-natural environment context in Africa, this PhD delivers: an innovative method of Mega-Aggregation Framework synthesis, a new qualitative evidence synthesis analytic method called Analysis by Storyboarding, a new conceptual model for adherence – the Adherence Assemblage, advances allyship in qualitative methods with the concept of the third sphere, actualised collaborative film production and creative works as synthesis, had a sustainable impact for both researchers and participants alike, and provides tangible recommendations for enabling environments to support adherence to ART for YWLPHIV. To enable environments for YWLPHIV, recommendations included supportive disclosure practices, self-efficacy and self-acceptance, supportive relationships and caring communities, mitigating violence as a barrier to adherence and safe outdoor spaces, acknowledging the material dimension, integrated and holistic health care, compassionate educational systems, and advancing knowledge systems and research practices. Conclusion: This study is one of the first to go beyond barriers and facilitators to adherence for people living with HIV and explores the role of the socio-natural-material environment in depth. Young women living in challenging communities in Cape Town, South Africa, struggled with adherence due to environmental and community-level factors such as violence, economic inequities, lack of social support, inadequate health systems, and disadvantageous structural community layouts. Risking their lives to travel to clinics in unsafe communities, silencing their voices in their households, and being at high risk for domestic violence and femicide in their romantic relationships demands of us to bring to light their experiences, which is in line with Sustainable Development Goals (SDG) 5 (gender equality) and ending all forms of discrimination against all women and girls in private and public spheres. Working from a multimodal perspective allowed us to venture deeper together and opened the research space for multiple stakeholders for rich engagement throughout the research process. The findings of this PhD contribute to the African evidence that future research and interventions can be built to support young women and their families as they navigate their journeys of adherence to ART. | en_ZA |
| dc.description.abstract | AFRIKAANSE OPSOMMING: Agtergrond: Geteiken weens geslag en ouderdom in Suid-Afrika, moet jong vroue dikwels oor gesondheid en veiligheid in hul huise en gemeenskappe onderhandel – dit is selfs meer uitdagend vir jong vroue wat met perinatale infeksies van menslike immuniteitsgebreksvirus (YWLPHIV) leef. Jong mense wat met perinatale infeksies leef, staar 'n chroniese siekte in die gesig, met behandeling wat die nakoming van lewenslange antiretrovirale behandeling (ART) insluit. Ons het beplan om meer te wete te kom oor jong vroue wat perinataal met Menslike Immuniteitsgebreksvirus (MIV) in Kaapstad besmet is, hul ervaring met MIV, hoe hulle nakoming van ART-regimes binne hul omgewings beding het, en hoe omgewings in staat gestel kan word om hul nakoming te ondersteun. Verder wou ons ondersoek hoe bondgenootskap in deelnemende navorsing verbeter kan word deur multimodale metodes en kreatiewe en artistieke visuele benaderings in te sluit. Metodes: Hierdie studie het gebruik gemaak van kwalitatiewe bewyssintese (QES) en multisensoriese kunsgebaseerde gemeenskapsdeelnemende navorsingsmetodes, wat saam met ses jong vroue as bondgenote gewerk het. In fase 1 het ons die bewyslandskap oor nakoming van ART gesintetiseer. In fase 2 het ons die Adherence Assemblage konseptuele ‘model’ van ART en die metodologiese benadering van die derde sfeer vir bondgenootskap gekonseptualiseer. In fase 3 het ons saam met YWLPHIV hul ervarings verken en kreatiewe kunswerke en 'n navorsingsdokumenter, Meer as 'n pil, geproduseer. In fase 4 het ons gefokus op aanbevelings vir bemagtigende omgewings. Ons multimodale benadering het metodes ingesluit soos QES, artistieke mede-skeppings, liggaamskartering, samewerkende rolprentvervaardiging, die versameling van materiele betekenisvoorwerpe, gemeenskapskartering, individuele en groepgesprekke, insluitend loop- en bestuuronderhoude, joernale, multisensoriese huis- en kliniekonderhoude, 'n navorsingskamp, en storievertelling. Analities het ons 'n nuwe materialistiese lens gebruik om 'n nuwe bemagtigende omgewingsraamwerk te ontwikkel vanaf die innoverende Adherence Assemblage-model en toegepaste analise soos mega aggregasieraamwerksintese, sintese deur storiebord, kreatiewe sintese en tematiese analise Resultate: Op grond van die bevindinge van veelvuldige tipes kwalitatiewe data, wat die perspektiewe van verskeie rolspelers vasgevang het, en die stemme van YWLPHIV versterk het, terwyl die sosiaal-materiaal-natuurlike omgewingskonteks in Afrika in ag geneem word, lewer hierdie PhD: 'n innoverende metode van Mega-Aggregation Framework sintese, 'n nuwe kwalitatiewe bewyssintese analitiese metode genaamd ‘Analysis by Storyboarding’, 'n nuwe konseptuele model vir nakoming – die Adherence Assemblage, bevorder bondgenootskap in kwalitatiewe metodes met die konsep van die derde sfeer, geaktualiseerde samewerkende filmproduksie en kreatiewe werke as sintese, het 'n volhoubare impak vir beide navorsers en deelnemers gehad, en verskaf tasbare aanbevelings om omgewings in staat te stel om nakoming van ART vir YWLPHIV te ondersteun. Ten einde omgewings vir YWLPHIV moontlik te maak, het aanbevelings ingesluit, ondersteunende openbaarmakingspraktyke, selfdoeltreffendheid en selfaanvaarding, ondersteunende verhoudings en omgee-gemeenskappe, versagting van geweld as 'n hindernis tot nakoming en veilige buitelugruimtes, erkenning van die materiele dimensie, geintegreerde en holistiese gesondheid sorg, deernisvolle onderwysstelsels, en die bevordering van kennisstelsels en navorsingspraktyke. Gevolgtrekking: Hierdie studie is een van die eerstes wat verder gaan as hindernisse en fasiliteerders tot nakoming vir mense wat met MIV leef en ondersoek die rol van die sosionatuurlike-materiele omgewing in diepte. Jong vroue wat in uitdagende gemeenskappe in Kaapstad, Suid-Afrika woon, het gesukkel met nakoming as gevolg van omgewings- en gemeenskapsvlakfaktore soos geweld, ekonomiese ongelykhede, gebrek aan sosiale ondersteuning, onvoldoende gesondheidstelsels en nadelige strukturele gemeenskapsuitlegte. Om hul lewens in gevaar te stel om na klinieke in onveilige gemeenskappe te reis, hul stemme stil te maak in hul huishoudings, en 'n hoe risiko vir gesinsgeweld en vroulike moord in hul romantiese verhoudings te he, vereis van ons om hul ervarings aan die lig te bring, wat in lyn is met Volhoubare Ontwikkelingsdoelwitte (SDG) 5 (geslagsgelykheid) en die beeindiging van alle vorme van diskriminasie teen alle vroue en meisies in private en openbare sfere. Deur vanuit 'n multimodale perspektief te werk, het ons toegelaat om dieper saam te waag en die navorsingsruimte vir veelvuldige belanghebbendes oop te maak vir ryke betrokkenheid deur die navorsingsproses. Die bevindinge van hierdie PhD dra by tot die Afrikabewyse dat toekomstige navorsing en intervensies gebou kan word om jong vroue en hul gesinne te ondersteun terwyl hulle hul reise van nakoming van ART navigeer. | af_ZA |
| dc.description.version | Doctorate | |
| dc.format.extent | 643 pages : illustrations, includes annexures | |
| dc.identifier.uri | https://scholar.sun.ac.za/handle/10019.1/128847 | |
| dc.language.iso | en_ZA | en_ZA |
| dc.publisher | Stellenbosch : Stellenbosch University | |
| dc.rights.holder | Stellenbosch University | |
| dc.subject.lcsh | Communicable diseases -- Women -- Africa | en_ZA |
| dc.subject.lcsh | Patient compliance -- Africa | en_ZA |
| dc.subject.lcsh | HIV-positive persons -- Medical care -- Africa | en_ZA |
| dc.subject.name | UCTD | |
| dc.title | Envisioning enabling environments for young women with perinatal infections of Human Immunodeficiency Virus in Africa : a participatory creative new-materialist approach. | en_ZA |
| dc.type | Thesis | en_ZA |
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