The subjective experiences and perceptions of care among depressed adolescents living with HIV attending a community adolescent HIV programme in Harare, Zimbabwe

Willis, Nicola (2016-12)

Thesis (MPhil)--Stellenbosch University, 2016.

Thesis

Introduction: Studies in Zimbabwe and elsewhere have found that adolescents with HIV are at risk of depression. Depression has a disabling effect on adolescents’ quality of life, increases suicide risk and impacts on their adult lives. There is also evidence from Zimbabwe that depression affects HIV positive adolescents’ adherence to antiretroviral medicines (ARVs). Sub-optimal adherence to ARVs results in virological replication and subsequent treatment failure. There are limited alternative treatment regimens available. High viral loads also increase the risk of HIV transmission to sexual partners and children. As HIV-related mortality rates rise in adolescents worldwide, evidence-based, adolescent-focused interventions which prevent and manage depression are urgently needed. If these services are to effectively meet adolescents’ needs, it is necessary to understand their own experiences of depression and their perceptions of the care that they have received and need. Methods: In-depth interviews were conducted with twenty-one HIV positive adolescents, 13-19 years old, diagnosed with major depressive disorder using DSM-V criteria. All participants were attending ‘Zvandiri’, a community programme for adolescents with HIV in Zimbabwe. The interviews were structured around a body mapping session, a creative arts technique. Participants were asked to create a painted map of their body to assist them in externalizing their somatic and emotional experiences. Verbal and visual data were collected from the interviews and body maps, then analysed thematically. Results:Participants described a relational model of depression, attributing their experiences of depression to their relationships and interactions with significant people in their lives, primarily family members and peers. A sense of being different from others was common, both due to their HIV status and the impact HIV has had on their life circumstances. Participants described a longing to be important or to matter to the people in their lives. A sense of isolation and rejection was common, as well as grief and loss, including ambiguous and anticipated loss. Participants’ idioms of distress included ‘thinking deeply’ (‘kufungisisa’), ‘pain’, darkness, ‘stress’ or a lack of hope and ambiguity for the future. Suicidal ideation was described, including slow suicide through poor adherence. Supportive factors were also relational, including the importance of supportive relatives and peers, clinic staff and psychosocial support programmes. Educational assistance and skills training for employment were also important. The results of this study suggest an ecological systems theoretical model for depression in adolescents with HIV, where characteristics at the microsystem level have the greatest influence on young person as they develop through childhood and adolescence. Body mapping was an effective, acceptable methodology for engaging adolescents in an exploration of their own narratives around depression. Participants described feeling relieved having shared experiences, emotions, life events and needs which they had not shared before. Conclusions and Recommendations: An understanding of HIV positive adolescents’ own narratives around depression can help to inform the development and integration of appropriate mental health interventions within HIV care and treatment programmes. Research is needed to validate culturally-sensitive diagnostic tools for depression in young people with HIV. An ecological systems framework should be adopted and utilised to strengthen community, family and peer-based interventions for the prevention and management of depression in adolescents with HIV. However, studies are needed to evaluate the effectiveness, acceptability and feasibility of such family and peer-led mental health interventions in preventing and managing depression and improving adherence to ARVs. This evidence must be disseminated to inform national and international policy and guidelines for adolescent HIV treatment and care.

Uittreksel Inleiding: Studies in Zimbabwe en elders het bevind dat adolessente wat gediagnoseer is met MIV ‘n risiko is om depressie te ondervind. Depressie het ‘n kreupele effek op adolessente se lewensgehalte, verhoog hulle risiko vir selfmoord en het ‘n impak op hulle volwasse lewe. Daar is ook bewyse vanuit Zimbabwe dat depressie affekteer MIV-positiewe adolessente se meewerkendheid aan antiretrovirale medikasie (ARVs). Suboptimale meewerkendheid aan ARVs veroorsaak virologiese replikasie en daaropvolgende behandelingmislukking. Daar is beperkte alternatiewe behandeling regimens beskikbaar. ‘n Hoë virale lading verhoog ook die risiko van MIV-oordrag na seksmaats en kinders. Soos die MIV-verwante sterftesyfer van adolessente wêreldwyd styg, is bewysgebaseerde ingryping wat op adolessente fokus, en wat depressie verhoed en beheer dringend nodig. Indien hierdie dienste die behoeftes van adolessente doeltreffend kan bevredig, is dit noodsaaklik om hulle eie ondervindinge van depressie te verstaan en hulle persepsie omtrent die sorg wat hulle ontvang het en benodig. Metodes: Diepgaande onderhoude was gedoen met 21 MIV-positiewe adolessente tussen die ouderdomme van 13 tot 19jaar oud, wie gediagnoseer is met kliniese depressie gebasseer op DSM-V kriteria. Alle deelnemers het “Zvandiri” bygewoon, ‘n gemeenskapsprogram vir adolessente wie MIV-positief is in Zimbabwe. Die onderhoude was gestruktureerd om ‘n lyfkaart sessie wat ‘n kreatiewe kuns tegniek is. Deelnemers was gevra om ‘n geverfde kaart van hulle liggaam te maak sodat dit hulle help met die eksternalisering van hulle somatiese en emosionele ondervindinge. Mondeling en visuele data was ingesamel vanaf die onderhoude en lyfkaarte vir tematiese analisering. Resultate: Deelnemers het ‘n relasionele model van depressie beskryf wat toegeskryf was aan hulle ondervindinge van depressie in hulle verhoudinge en interaksie met belangrike mense in hulle lewe, en wie hoofsaaklik familielede en vriende is. Die gevoel om anders te voel in vergelyking met ander mense was algemeen, weens hulle MIV-status en die impak wat MIV gehad het op hulle lewensomstandighede. Deelnemers het beskryf hoe hulle verlang om belangrik te voel of om saak te maak vir die mense in hulle lewe. ‘n Gevoel van isolasie en verwerping was algemeen, asook rou en verlies, insluitend dubbelsinnige en verwagte verlies. Deelnemers se idiome van nood het ingesluit “dink diep” (kufungisisa), “pyn”, donkerte, “stres” of ‘n gebrek aan hoop en dubbelsinnigheid oor die toekoms. Selfmoord denkbeeldvorming was beskryf, insluitend stadige selfmoord deur swak meewerkendheid. Ondersteuningsfaktore was ook relasioneel, insluitend die belangrikheid van ondersteuningsfamilielede en vriende, kliniek personeel en psigososiale ondersteuningsprogramme. Opvoedkundige bystand en vaardigheidsopleiding vir indiensneming was ook belangrik. Die resultate van hierdie studie stel voor ‘n ekologiese stelsels teoretiese model vir depressie in adolessente met MIV, waar karaktereienskappe by die mikrostelselsvlak die grootste invloed het op jongmense soos hulle ontwikkel deur kinderjare en adolessensie. Lyfkartering was ‘n effektiewe, aanvaarbare metodologie vir die betrekking van adolessente in ‘n ondersoek van hulle eie verhaal oor depressie. Deelnemers het ‘n gevoel van verligting beskryf ná hulle ondervindinge, emosies, en lewensgebeurtenisse gedeel het, en behoeftes wat hulle nog nie voorheen gedeel het nie. Gevolgtrekkings en Aanbevelings: ‘n Begrip van MIV-positiewe adolessente se eie verhale rondom depressie kan help met die ontwikkeling en integrasie van toepaslike geestelikgesondheidingrypings binne MIV-sorg en behandelings programme. Navorsing word benodig met die geldigheidsbepaling van kultuursensitiewe diagnostiese instrumente vir depressie in jongmense wat gediagnoseer is met MIV. ‘n Ekologiese stelselsraamwerk moet gebruik word vir die versterking van gemeenskap, familie, en portuurgebaseerdeingrypings, en vir die voorkoming en bestuur van depressie in adolessente wat gediagnoseer is met MIV. Studies word egter benodig om die doeltreffendheid, aanvaarbaarheid, en uitvoerbaarheid te evalueer soos die van die familie en poortuurgeleide geestelikgesondheidingryping, in die voorkoming en bestuur van depressie en verbetering van meewerkendheid aan ARVs. Hierdie bewyse moet meegedeel word om nasionale en internasionale beleid en riglyne vir adolessente MIV-behandeling en sorg.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/100126
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