Burns, Rose

Kalua, T

Magalasi, D

Pasquier, E

Renju, J

Salumu, L

Szumilin, E

Wringe, Alison

English

LSHTM Research Online

Social circumstances and the responsibility of care for ALHIVThe social circumstances surrounding the ALHIV-caregiver dyadic wereinstrumental in shaping caregivers’ attitudes towards care:• Responsibility for orphaned ALHIV was often perceived as a drain ontime or financial resources:• The caregivers’ HIV status also influenced the disclosure process andcould represent an emotional burden. For some parents, a sense of guiltabout the child’s infection could hinder disclosure. Conversely, manyHIV-negative caregivers did not know how to broach the topic:• However for some ALHIV with HIV-infected caregivers, disclosure wasfacilitated by the shared experience of pill-taking:• Caregivers HIV status also impacted on HIV stigma in the household:some ALHIV were told to hide their HIV status and pills in the house toprevent deductive disclosure of the parents’ status.Aim: To explore the interplay between caregiving dynamics and ART  adherence among ALHIV in rural MalawiBackground• Over 2 million adolescents living with HIV (ALHIV) in sub-Saharan Africa1• 50% increase in HIV deaths among ALHIV between 2005-12 due to poorantiretroviral therapy (ART) access and adherence2.• Growing recognition that ALHIV adherence is shaped by social factorsincluding caregivers’ support3 but, few studies consider how caregivingdynamics are influenced by social circumstances (e.g orphanhood) andthe consequences of caring for ALHIV (e.g stigma, financial costs).• Caregivers are often overlooked from interventions that are designed tosupport adherence among ALHIVResults“Because when your parents are taking part, it becomes so easy”:  A qualitative study to understand the role of caregiving dynamics in adolescents’ adherence to antiretroviral therapy in rural Malawi.Methods• Repeated in-depth interviews (IDI) with 16 ALHIV on 1st line ART and IDI with 16 caregivers (see table 1)Discussion• Social circumstances underlying caregiving arrangements and their socialconsequences influence the caregiver-ALHIV dynamic which in turninfluences adherence (figure 2)• Caregivers were often poorly resourced to manage the responsibility thatcaring for an ALHIV entails which undermines adherence.• Counselling for caregivers should address guilt, emotional burnout, andoffer support with disclosure, communication and care for ALHIV.• Family-level interventions, including home visits by lay or professionalcounselors may support ALHIV and caregivers and improve adherence. Study setting• Chiradzulu District, southern Malawi; HIVprevalence 17%. Most residents engage infarming, petty trade.• Medecins sans Frontieres supporting the Ministryof Health to provide HIV care in 11 facilitiesincluding 1150 ALHIV on 1st line ART.• Virological failure estimated at ~31% amongALHIV on 1st line ART > 6 months3• ALHIV guidelines recommend incremental HIVdisclosure with full disclosure by age 12His siblings just left him since he was not listening to them when they said that “you should remain here and be taking your medicine right here (caretaker)Photos: The study setting and HIV clinic in ChiradzuluReferences{1] https://data.unicef.org/topic/hivaids/adolescents-young-people/[2]UNAIDS, Global report: UNAIDS report on the global AIDS epidemic 2013. 2013, UNAIDS: Geneva.[2] Williams S. Scaling a waterfall. A meta-ethnography of adolescent progression through the stages of HIV care in sub-SaharanAfrica. JIAS 2017 Sep 15;20(1):21922.[3] B Schramm et al. High proportion of virological failure and drug resistance among adolescents on first-line ART in ChiradzuluDistrict, Malawi. IAS Paris July 2017Conceptual perspectiveWe draw on Kleinman’s theory of social suffering4 as a lens throughwhich to explore how:• Adherence can be viewed as a product of socioeconomic andsociopolitical circumstances which are often dire for ALHIV• The family, viewed as a social institution, has potential to support orundermine ALHIV’s adherence;• Caregivers may also suffer through the burden of caring for ALHIVwhich may further undermine young peoples’ adherenceAcknowledgements: We would like to thank the participants and field teams for their support.Contact: Alison.Wringe@lshtm.ac.ukA Wringe1, R Burns2, D Magalasi3, T Kalua4, P Blasco5, E Szumilin5, J.Renju1, L. Salumu5, E Pasquier5.1. London School of Hygiene and Tropical Medicine, UK; 2. Epicentre, France; 3.Médecins sans Frontières, Malawi; 4. Ministry of Health, Malawi; 5.Médecins sans Frontières, France.Table 1: Participant characteristics• IDIs covered ALHIV and caregiver experiences of ART, caring and HIV disclosure.• IDIs recorded, transcribed, translated into English. • Data coded inductively and analysed thematically.• Ethical approval from the National Health Sciences Research Committee (Malawi) and LSHTM (UK)I can’t say that I can take a good care of him.. the way I live here its hard  … I have nothing, and so I think to myself:  what if I take him? But then what am I going to give him? I already have 4 other children…(caretaker)Caregiver-adolescent relationships influence adherence behavioursThe nature of the caregiver-adolescent relationship in turn influencedtheir adherence to ART:• Supportive relationships with caregivers facilitated pill-taking:• In contrast, when caregiving relationships broke down, ALHIV weresusceptible to feelings of anxiety and stress. Those with precariousliving arrangements, multiple caregivers and little emotionalsupport often experienced challenges in adhering to ART.• In turn, poor adherence further undermined caregivingrelationshipsFigure 2: Schematic representation of the relationship between social circumstances, caregiving relationships and ALHIV adherence. D; So the time that you were explaining to her this news (disclosure), how did she react? R: She didn’t get sad because she was also seeing me taking medicine, so she wasn’t upset (caretaker)can you also explain how you as the mother help her? Alright, we help this child in various ways encouraging her to work hard in school and…in terms of adherence to medication and telling her how she got the virus …and being open with her so that she knows. And we tell her that if she is suffering from illness she should let us know so that we can help (caretaker)“Ok was the child told that she had the virus? No, but now she knows that she takes the medicine but she has not been told…Aaah I just feel like she got a sense about it when taking the medicine. But still now..I don’t know what to say - it [HIV] is hard to explain (caretaker) R: Yes because there was a time when he stopped taking the medicine and this will be like the second time.  T: hhmm, why did he stop? R: Problems with the shortage of food, lack of proper care…. So it is like he just threw his life away and he says I should just die and a lot of other things. Hee I should just die, you do not give me food, and all sorts of things (caretaker)Because when your parents are taking part, it becomes so easy…… (ALHIV)

Because when your parents are taking part, it becomes so easy’: A qualitative study to understand the role of caregiving dynamics in adolescents’ adherence to antiretroviral therapy in rural Malawi

https://researchonline.lshtm.ac.uk/id/eprint/4657536/1/WringeA_IUSSP_Ado_Family_2410.pdf

Because when your parents are taking part, it becomes so easy’: A qualitative study to understand the role of caregiving dynamics in adolescents’ adherence to antiretroviral therapy in rural Malawi

Abstract

Similar works

Full text

Available Versions

LSHTM Research Online