Barriers to and facilitators of the transition to adult care among HIV-infected youth in the Western Cape

Mbebe, Sylvie (2020-03)

Thesis (MA)--Stellenbosch University, 2020.

Thesis

ENGLISH ABSTRACT: Background. South Africa has the highest rate of HIV-infection in the world, and with nearly one-third of all new HIV-infections occurring in the age group 15−24 years, adolescents and young people bear the burden of this disease. As children and young people move through their developmental stages, those living with chronic illnesses also move through the healthcare system, transitioning from paediatric services to adult services. Ideally, when those receiving paediatric care reach late adolescence (15–19 years) or early adulthood (19–25 years), they should transfer to adult care so that they can start managing their own health. However, in resource-limited settings like South Africa, little is understood of the transition process and the factors that may contribute to or hinder the process. As such, the aim of this study was to explore the barriers to and the facilitators of transition to adult HIV care among HIV-infected youths in the Western Cape from the perspectives of healthcare providers who provide paediatric and adult HIV healthcare services. Methods. I used purposive sampling methods to recruit participants for this study. Data gathering included in-depth, semi-structured interviews with 24 healthcare providers (pharmacists (n=7), doctors (n=3), nurses (n=8), sisters (n=2), counsellors (n=1)) and three additional hospital staff (one data capturer and two administrative clerks). The interviews were audio-recorded and transcribed verbatim for the purposes of thematic analysis. I analysed the data using ATLAS.ti computer software. Further, I used an observation schedule to document the moment-by-moment occurrences in the patient waiting rooms of the two healthcare facilities included in this study. Results. Four themes and 10 subthemes that captured participants’ sentiments on the barriers to and facilitators of transition to adult care emerged from the data. The four themes were (1) understanding and conceptualization of transition; (2) individual factors affecting transition; (3) healthcare system factors affecting transition; and (4) social factors affecting transition. Participants understood transition to mean different things, including a change in the medication regimen, a change of clinic or a change of doctor. Some were not familiar with the term. Barriers to transition included a lack of transition readiness, the unfriendly clinic environment, services gaps, a lack of knowledge about HIV, a lack of communication, adolescents’ developmental stage, home environments and broad contextual issues (such as poverty and inequality, the breakdown of family, and stigma). Further issues were related to service provision, such as inadequate resources in the clinic, insufficient training, lack of policies, and fragmented services. Participants suggested that an increase in the number of healthcare professionals and the employment of younger staff could be of benefit. They also suggested that training and preparatory programmes could provide adolescents with adequate support and prepare them for transition. Participants furthermore proposed ongoing individual counselling sessions for transitioning adolescents as well as a tracking system for defaulters from adult clinics. Others suggestions included the creation of youth-friendly clinics with integrated healthcare systems only for youths; training of healthcare providers in adolescent medicine, and the creation of centres and programmes for youths in their communities. Participants also highlighted the importance of the implementation of continuous HIV awareness programmes and resources for HIV-infected youths and their families. Conclusion. The findings from this study demonstrate that the transition to adult care is not always easy. Understanding the barriers to and facilitators of the transition to adult care will help guide informed initiatives and strategies that can improve the transition process from the paediatric to the adult healthcare setting. Targeting the needs of adolescents during the process of transition has the potential to improve adolescents’ adherence to treatment and to promote long-term health outcomes.

AFRIKAANSE OPSOMMING: Agtergrond. Suid-Afrika het die hoogste MIV-infeksiesyfer in die wêreld. Bykans een derde van alle nuwe MIV-infeksies betrek persone in die ouderdomsgroep 15–24 jaar, wat beteken dat adolessente en jong volwassenes grootliks die las van hierdie siekte dra. Soos kinders en jongmense deur hulle ontwikkelingsfases beweeg, moet diegene wat met kroniese siektes saamleef deur die gesondheidstelsel beweeg en algaande die oorgang van pediatriese dienste na volwasse dienste maak. Ideaal gesproke moet persone wat pediatriese dienste ontvang na volwasse sorg oorgaan wanneer hulle laat adolessensie (15–19 jaar) of vroeë volwassenheid (19–25 jaar) bereik, sodat hulle kan begin om hulle eie gesondheid te bestuur. In kontekste met beperkte hulpbronne, soos Suid-Afrika, is daar egter nog minder kennis oor wat hierdie oorgangsproses behels asook die faktore wat die proses kan ondersteun of kan verhinder. Die doel van hierdie studie was om die struikelblokke en die faktore wat die oorgang na volwasse MIV-sorg vergemaklik by MIV-besmette jeug in die Wes-Kaap uit die perspektief van MIV-gesondheidsdiensverskaffers van pediatriese en volwasse dienste te ondersoek. Metodologie. Ek het doelgerigte steekproefnemingsmetodes gevolg om deelnemers vir die studie te identifiseer. Data-insameling het in-diepte, semigestruktureerde onderhoude met 24 gesondheidsorgverskaffers (aptekers (n=7), dokters (n=3), verpleegkundiges (n=8), susters (n=2), beraders (n=1)) en drie bykomende hospitaalpersoneel (een datavaslegger en twee administratiewe klerke) behels. Ek het klankopnames van die onderhoude gemaak en dit verbatim getranskribeer. Die data is ontleed met behulp van ATLAS.ti rekenaarsagteware. Ek het daarbenewens ʼn observasieskedule gebruik om die oomblik-vir-oomblik gebeure in die pasiënt wagkamers van die twee deelnemende gesondheidsorginstellings te dokumenteer. Resultate. Vier temas en 10 subtemas wat die deelnemers se sienings oor struikelblokke en faktore wat die oorgang na volwasse sorg vergemaklik weergegee het, het uit die data na vore gekom. Die vier temas was (1) verstaan en konseptualisering van oorgang; (2) individuele faktore wat die oorgang affekteer; (3) faktore binne die gesondheidsorgstelsel wat oorgang raak; en (4) maatskaplike faktore wat oorgang beïnvloed. Deelnemers het verskillende dinge onder oorgang verstaan, onder andere ʼn verandering van die medikasieregimen, ʼn verandering van kliniek, of ʼn verandering van dokter. Sommige deelnemers was nie bekend met die term nie. Struikelblokke tot oorgang is geïdentifiseer as ontoereikende oorgangsgereedheid, die onvriendelike kliniekomgewing, die gapings in dienste, ʼn gebrek aan kennis rakende MIV, ʼn gebrek aan kommunikasie, adolessente se ontwikkelingstadium, huislike omstandighede, en breë kontekstuele faktore (soos armoede en ongelykheid, die verbrokkeling van die gesin, en stigma). Verdere probleme hou verband met dienslewering, soos ontoereikende hulpbronne by klinieke, onvoldoende opleiding, gebrekkige beleid, en gefragmenteerde dienste. Deelnemers was van mening dat ʼn groter aantal gesondheidsorgwerkers en die indiensneming van jonger personeel van waarde kan wees. Hulle het ook gestel dat opleidings- en voorbereidingsprogramme aan adolessente ondersteuning kan bied en hulle kan voorberei vir die oorgang. Deelnemers het verder voorgestel dat adolessente wat besig is om die oorgang te maak deurlopende individuele berading moet ontvang en dat ʼn naspoorstelsel uit volwasse klinieke tot stand gebring moet word om nienakomende adolessente te ondervang. Ander voorstelle was die vestiging van jeugvriendelike klinieke met geïntegreerde gesondheidsorgstelsels net vir die jeug; die opleiding van gesondheidsorgverskaffers in adolessente medisyne, en die vestiging van sentrums en programme vir die jeug binne hulle gemeenskappe. Die deelnemers het ook die belangrikheid van die implementering van deurlopende MIV-bewustheidsprogramme en hulpbronne vir MIV-besmette jeug en hulle gesinne beklemtoon.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/107908
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