Caring for ‘underground’ kids: qualitative interviews with clinicians about key issues for young people growing up with perinatally acquired HIV in Australia

Persson, Asha; Newman, Christy E.; Miller, Angela

doi:10.1080/02673843.2013.866149

Cited by 9 publications

(7 citation statements)

References 40 publications

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“…Special attention is needed for HIV caregivers and their HIV-positive adolescents in rural Mainland China and elsewhere. In a similar manner to HIV/AIDS Community Healthcare Workers centres/programs (Kenu et al, 2014;Persson, Newman, & Miller, 2014) these centres have the potential to reduce HIV transmission and increase compliance with ART globally.…”

Section: Discussionmentioning

confidence: 99%

Secrets, shame and guilt: HIV disclosure in rural Chinese families from the perspective of caregivers

Wong

Holroyd

Miu

et al. 2017

Vulnerable Children and Youth Studies

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This in-depth ethnographic study examines the processes, barriers and impacts experienced by Mainland Chinese caregivers residing in rural Yunnan for disclosing HIV status to their adolescents born with the infection and other community members. In particular, highlighted are their associated personal, social, relational and cultural vulnerabilities. A purposeful sample of 13 pairs of HIV-born adolescents between the ages of 11–19 years and their primary caregivers were recruited in December 2014. The Conceptual Model Sexual Health Disclosure (CMSHD) was modified with Chinese culturally specific adaptation to guide the exploration of the complex aspects of the adolescents and caregiver’s relationships. All interviews were audiotaped, transcribed verbatim and then translated into English. Complex sociocultural interactions emerging in these dyadic interviews included guilt, shame, unintended disclosure, the need for secrecy, perceived stigma, ‘loss of face’, protection of parents, inability to support their families and deep concerns over lineage and future marriage prospects amongst the parents, which had significant psychosocial and even physical impacts for these adolescents born with HIV and their families. Frontline health-care workers and HIV peer support programs are recommended to counteract China’s current top-down biomedical disease-related approach to health services. It is crucial to provide instrumental avenues of confidential psychosocial support including disclosure approaches for caregivers of HIV positive adolescents within a uniquely Chinese cultural context

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Section: Discussionmentioning

confidence: 99%

Secrets, shame and guilt: HIV disclosure in rural Chinese families from the perspective of caregivers

Wong

Holroyd

Miu

et al. 2017

Vulnerable Children and Youth Studies

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“…Adolescent development poses challenges to adherence. As many youth learn their HIV status during identity formation, some may face struggles with how to incorporate HIV disease [44]. Non-adherence may be a way older adolescents assert independence from parents, clinicians, and other authority figures.…”

Section: Discussionmentioning

confidence: 99%

Psychiatric symptoms and antiretroviral nonadherence in US youth with perinatal HIV

Kacanek

Angelidou

Williams

et al. 2015

Aids

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Objectives The relationship of specific psychiatric conditions to adherence has not been examined in longitudinal studies of youth with perinatal HIV infection (PHIV). We examined associations between psychiatric conditions and ARV non-adherence over two years. Design Longitudinal study in 294 PHIV youth, 6–17 years old, in the US and Puerto Rico. Methods We annually assessed three non-adherence outcomes: missed >5% of doses in past 3 days, missed a dose within the past month, and unsuppressed viral load (VL) (>400 copies/mL). We fit multivariable logistic models for non-adherence using Generalized Estimating Equations and evaluated associations of psychiatric conditions (ADHD, disruptive behavior, depression, anxiety) at entry with incident non-adherence using multivariable logistic regression. Results Non-adherence prevalence at study entry was 14% (3-day recall), 32% (past month non-adherence), and 38% (unsuppressed VL), remaining similar over time. At entry, 38% met symptom cutoff criteria for ≥1 psychiatric condition. Greater odds of 3-day recall non-adherence were observed at Week 96 for those with depression (Adjusted Odds Ratio (aOR)=4.14; 95% confidence interval (CI): 1.11–15.42) or disruptive behavior (aOR=3.36; 95% CI: 1.02–11.10) but not at entry. Those with vs. without ADHD had elevated odds of unsuppressed VL at Weeks 48 (aOR=2.46; 95% CI: 1.27–4.78) and 96 (aOR=2.35; 95% CI: 1.01–5.45) but not at entry. Among 232 youth adherent at entry, 16% reported incident 3-day recall non-adherence. Disruptive behavior conditions at entry were associated with incident 3-day recall non-adherence (aOR=3.01; 95% CI: 1.24–7.31). Conclusions In PHIV youth, comprehensive adherence interventions that address psychiatric conditions throughout the transition to adult care are needed.

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“…Most participants expressed caution about connecting with an HIV study online. Participants living with PHIV expressed strong concerns about HIV stigma and inadvertent disclosure, similar to other youth living with HIV worldwide [ 1 - 4 , 27 - 30 ], more often than participants living with PHEU. These concerns, combined with the common practice of sharing devices and actively engaging with each other’s social media accounts, influenced their social media and technology preferences in the context of longitudinal HIV research.…”

Section: Discussionmentioning

confidence: 88%

“…Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the novel virus that causes coronavirus disease (COVID-19), emerged in the United States in January 2020 and has quickly forced studies to adapt their procedures to enable remote communication with and collect data from participants. Young adults living with PHIV or PHEU may be navigating increased autonomy, careers, school, and relationships while managing HIV, stigma, and disclosure [ 1 - 4 ], medication fatigue from lifelong antiretroviral regimens [ 5 ], and family relationships in the context of HIV. Using digital communication methods holds potential for retaining the participation of these young adults in studies.…”

Section: Introductionmentioning

confidence: 99%

Using Social Media and Technology to Communicate in Pediatric HIV Research: Qualitative Study With Young Adults Living With or Exposed to Perinatal HIV

Berman¹,

Kacanek²,

Nichamin³

et al. 2020

JMIR Pediatr Parent

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Background As young adults living with perinatal HIV (PHIV) or perinatal HIV exposure but uninfected (PHEU) grow older and manage the challenges and competing demands of young adulthood, new approaches are needed to facilitate their retention in longitudinal research and clinical care beyond in-person clinic visits. Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the novel virus that causes coronavirus disease (COVID-19), emerged in the United States in January 2020 and has underscored this need; studies are adapting to remote communication with and data collection from participants. However, there are limited data on communication preferences among young adults who are living with PHIV or PHEU. Objective The objectives of this qualitative study were to describe participants’ perceptions and use of social media and technology in their personal lives and in the context of participating in longitudinal pediatric HIV research and to describe the implications of the use of technology and social media for communication and retention purposes within a longitudinal pediatric study about HIV. Methods We conducted 6 focus group discussions with 31 young adults living with PHIV and 13 in-depth interviews with 6 young adults living with PHIV and 7 living with PHEU. We asked about their preferences for the use of social media and digital technology in the Adolescent Master Protocol, a US-based longitudinal cohort study of youth affected by HIV. Results Participants’ willingness to use social media platforms, telephone calls, SMS text messages, and video calls within the context of HIV research varied due to fears of HIV stigma and inadvertent disclosure. However, trusting relationships with clinical staff positively impacted their willingness to use these platforms. Conclusions Our findings offer insight into how pediatric studies and clinics can communicate with participants as they age, even as new technologies and social media platforms emerge and replace old ones. For optimal retention, pediatric clinical staff should consider communication approaches offering flexible and tailored options for young adults participating in HIV research.

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Caring for ‘underground’ kids: qualitative interviews with clinicians about key issues for young people growing up with perinatally acquired HIV in Australia

Cited by 9 publications

References 40 publications

Secrets, shame and guilt: HIV disclosure in rural Chinese families from the perspective of caregivers

Secrets, shame and guilt: HIV disclosure in rural Chinese families from the perspective of caregivers

Psychiatric symptoms and antiretroviral nonadherence in US youth with perinatal HIV

Using Social Media and Technology to Communicate in Pediatric HIV Research: Qualitative Study With Young Adults Living With or Exposed to Perinatal HIV

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