“Not Taking it Will Just be Like a Sin”: Young People Living with HIV and the Stigmatization of Less-Than-Perfect Adherence to Antiretroviral Therapy

Bernays, Sarah; Paparini, Sara; Seeley, Janet; Rhodes, Tim

doi:10.1080/01459740.2017.1306856

Cited by 48 publications

(57 citation statements)

References 39 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In our study, ALHIV chose to hide missed doses for a host of reasons including as a means of self-protection from disciplinary or punitive measures. Our findings accord with other studies that suggest that ALHIV may under-report non-adherence so as not to disappoint clinical staff and counsellors with whom they may have formed close or dependant relationships [30] and as a strategy to avoid the stigmatization associated with less than perfect adherence [10,14]. Clinical protocols and counselling messages need to convey the importance of optimal adherence while acknowledging that "perfect" adherence may not be needed for viral suppression [31] even if the nuances of this are challenging to communicate to patients, and that virological failure due to drug resistance cannot be resolved through improved adherence to the same regimen [32].…”

Section: Discussionsupporting

confidence: 91%

“…Our findings align with those of other studies that suggest that the choices that adolescents make in relation to healthrelated behaviours, including pill-taking, are frequently restricted by the "moral, social and cultural consent" of the adults in their lives [14], and the messages that they impart [28]. As such, their agency to enact health-promoting behaviours is "bounded" by their placement within the lower echelons of the hierarchies that exist within their families, in HIV clinics and within the communities in which they live [29].…”

Section: Discussionsupporting

confidence: 91%

“…Clinical protocols and counselling messages need to convey the importance of optimal adherence while acknowledging that “perfect” adherence may not be needed for viral suppression even if the nuances of this are challenging to communicate to patients, and that virological failure due to drug resistance cannot be resolved through improved adherence to the same regimen . A reasonable margin of error in the timing of doses may reduce adolescents' secrecy and ultimately improve their treatment adherence .…”

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

“We give them threatening advice…”: expectations of adherence to antiretroviral therapy and their consequences among adolescents living with HIV in rural Malawi

Burns¹,

Magalasi²,

Blasco

et al. 2020

J Intern AIDS Soc

View full text Add to dashboard Cite

Introduction Many adolescents living with HIV in sub‐Saharan Africa struggle to achieve optimal adherence to antiretroviral therapy (ART), but few studies have investigated how their treatment‐taking decisions are influenced by their social interactions with providers, caregivers and community leaders. This study aims to explore the narratives that define expectations of adherence to ART among adolescents living with HIV in a rural Malawian setting. Methods Overall, 45 in‐depth interviews were conducted in 2016 with adolescents living with HIV, caregivers, health workers and community leaders, and four group sessions using participatory tools were undertaken with adolescents. Interviews and group sessions were audio‐recorded, transcribed and translated into English. Data were coded inductively and analysed thematically. Results Adolescents were given strict behavioural codes around optimal treatment adherence, which were often enforced through encouragement, persuasian and threats. In HIV clinics, some staff supported adolescents with broader concerns relating to living with HIV, but other measures to address sub‐optimal adherence in HIV clinics were perceived by patients as punitive, including pill‐counts and increased frequency of clinic visits. Community leaders felt responsible for young peoples' health, sometimes attempting to influence their treatment‐taking by threatening to withdraw services, or to publically “out” those deemed to be non‐adherent. At home, discussions with adolescents about HIV were often limited to dose reminders, and some caretakers resorted to physical punishment to ensure adherence. While some adolescents complied with strictly‐enforced adherence rules, others demonstrated resistance by hiding missed doses, secretly throwing away drugs, or openly refusing to take them. Conclusions The potential of young people to adhere to their ART may be undermined by restrictive messages and punitive approaches to enforce and control their engagement with treatment at home, in the clinic and in the wider community. Interventions should focus on creating safe spaces for adolescents to speak frankly about the adherence challenges that they face and support for caregivers including home‐based interventions.

show abstract

Section: Discussionsupporting

confidence: 91%

Section: Discussionsupporting

confidence: 91%

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

“We give them threatening advice…”: expectations of adherence to antiretroviral therapy and their consequences among adolescents living with HIV in rural Malawi

Burns¹,

Magalasi²,

Blasco

et al. 2020

J Intern AIDS Soc

View full text Add to dashboard Cite

show abstract

“…Several participants in this study reported issues with adherence, despite having adequate information and a strong desire to adhere, supporting findings from previous studies that have shown that information is necessary but not sufficient to ensure good adherence over time [41]. Restrictions that assign moral responsibility and instil fear may inadvertently dismiss the social challenges that adolescents face in adhering, and encourage silence around non-adherence [42][43][44]. Adherence support provided by family members and healthcare providers should therefore recognize the broader social and environmental challenges of adherence for ALHIV, acknowledging a margin of flexibility for adherence, and understanding the fluidity of adherence as they grow up with HIV [45].…”

Section: Discussionsupporting

confidence: 78%

“My mother told me that I should not”: a qualitative study exploring the restrictions placed on adolescent girls living with HIV in Zambia

et al. 2017

View full text Add to dashboard Cite

IntroductionAdolescent girls in sub‐Saharan Africa are disproportionately affected by HIV due to a range of social and structural factors. As they transition to adulthood, they are recipients of increasing blame for HIV infection and ‘improper’ sex, as well as increasing scrutiny, restrictions and surveillance. This study used a qualitative and participatory approach to explore the messaging and restrictions imposed on adolescent girls living with HIV in Zambia.MethodsThirty‐four in‐depth interviews and four participatory workshops were carried out with 24 adolescent girls aged 15 to 19 years old living with HIV in Lusaka, Zambia. Key themes explored included experiences living with HIV, finding out about HIV status, disclosure, experiences with antiretroviral treatment, and support needs. Data were organized, coded and analysed using a grounded theory approach to thematic analysis. This analysis uses data on participants’ experiences of living with HIV and their interactions with their parents, guardians and healthcare providers.ResultsFamily and healthcare providers, partly in a quest to protect both the health of adolescent girls living with HIV and also to protect them from blaming discourse, imposed restrictions on their behaviour around three main topics: don't disclose your HIV status, don't have sex, and don't miss your medicines. These restrictions were often delivered using tactics of fear, and usually disconnected from other options. Participants responded to these messages in several ways, including internalizing the messages, changing their behaviour either to comply with or resist the restrictions, by remaining silent and anxious when restrictions were broken, and developing concerns around their own health and sexual and reproductive aspirations. Participants also sometimes experiencing stigma when restrictions could not be maintained.ConclusionsRestrictive messages were delivered to adolescent girls living with HIV through the broader social discourses of stigma, religion, and global and local narratives about HIV. Programmes aiming to support adolescent girls living with HIV need to work together with parents and healthcare providers to reflect on the impact of sanctioning messages, and to encourage more enabling and empowering messaging for adolescent girls living with HIV.

show abstract

“…4 Lack of disclosure of their HIV status and, commonly, insufficient discussions about the implications of HIV and ART often fail to adequately support young people's ongoing adherence. 5 Limited control over their living environments and secrecy surrounding HIV and treatment-taking represent significant barriers to adherence. [6][7][8][9] Treatment fatigue in facing a lifetime of ART is considered an important reason for poor adherence among young people living with HIV as with other long-term conditions, [10][11][12] …”

Section: Introductionmentioning

confidence: 99%

Qualitative study of the BREATHER trial (Short Cycle antiretroviral therapy): is it acceptable to young people living with HIV?

et al. 2017

Self Cite

View full text Add to dashboard Cite

ObjectivesA qualitative study of the BREATHER (PENTA 16) randomised clinical trial, which compared virological control of Short Cycle Therapy (SCT) (5 days on: 2 days off) with continuous efavirenz (EFV)-based antiretroviral therapy (CT) in children and young people (aged 8–24) living with HIV with viral load <50 c/mL to examine adaptation, acceptability and experience of SCT to inform intervention development.SettingPaediatric HIV clinics in the UK (2), Ireland (1), the USA (1) and Uganda (1).ParticipantsAll BREATHER trial participants who were over the age of 10 and aware of their HIV diagnosis were invited to participate. 49 young people from both arms of the BREATHER trial (31 females and 18 males; 40% of the total trial population in the respective sites; age range 11–24) gave additional consent to participate in the qualitative study.ResultsYoung people from both trial arms had initial concerns about the impact of SCT on their health and adherence, but these decreased over the early months in the trial. Young people randomised to SCT reported preference for SCT compared with CT pre-trial. Attitudes to SCT did not vary greatly by gender or country. Once short-term adaptation challenges were overcome, SCT was positively described as reducing impact of side effects, easing the pressure to carry and remember medication and enabling more weekend social activities. Young people on both arms reported frequent medication side effects and occasional missed doses that they had rarely voiced to clinical staff. Participants liked SCT by trial end but were concerned that peers who had most problems adhering could find SCT disruptive and difficult to manage.ConclusionsTo realise the potential of SCT (and mitigate possible risks of longer interruptions), careful dissemination and communication post-trial is needed. SCT should be provided alongside a package of monitoring, support and education over 3 months to allow adaptation.Trial registration numberNCT 01641016

show abstract

“Not Taking it Will Just be Like a Sin”: Young People Living with HIV and the Stigmatization of Less-Than-Perfect Adherence to Antiretroviral Therapy

Cited by 48 publications

References 39 publications

“We give them threatening advice…”: expectations of adherence to antiretroviral therapy and their consequences among adolescents living with HIV in rural Malawi

“We give them threatening advice…”: expectations of adherence to antiretroviral therapy and their consequences among adolescents living with HIV in rural Malawi

“My mother told me that I should not”: a qualitative study exploring the restrictions placed on adolescent girls living with HIV in Zambia

Qualitative study of the BREATHER trial (Short Cycle antiretroviral therapy): is it acceptable to young people living with HIV?

Contact Info

Product

Resources

About