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

Abstract

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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“…Also, disclosure was a strategy for avoiding gossip and embarrassment and having peace of mind, as also shown by Bell et al (2016) and Bond (2010). Self-isolation due to HIV shame was reported as a key reason for non-disclosure, depression and social withdrawal, similar to findings by Ho and Goh (2017), Hutchinson and Dhairyawan (2018), Vincent et al 2017and Wong et al (2017). These results are distinctive, because they show disclosure as a process and not a one-off event.…”

Sexual and reproductive health and rights of “last mile” adolescents: a scoping review

“…Sample populations included refugees from Sudan, the Democratic Republic of Congo, Somalia, Burundi, Iraq and Bhutan. n/a n/a Toska et al, 2020 63 Quantitative, Cross-sectional 10–24 Females South Africa Mixed Random and purposive Tumwesigye et al, 2013 64 Quantitative, Cross-sectional 15–24 Males and females Uganda Mixed Multi-stage cluster Wado et al, 2020 65 Scoping review 10–19 Males and females Sub-Saharan Africa n/a n/a Wong et al, 2017 66 Qualitative, Cross-sectional 11–19 Males and females China Rural Purposive Ziraba et al, 2018 67 Quantitative, Cross-sectional 12–23 Females Kenya Urban Random a At the time of this study, participants’ age varied from 18 to 35 years; however, their adolescent experiences were explored. b Age-disaggregated data for adolescents available.…”

“Thanks for Telling Me”: The Impact of Disclosing Sex Secrets on Romantic Relationships

“…Sexual self-disclosure is defined as the willingness of an individual to share their sexual preferences or past behaviors with their romantic partner (Rehman et al 2011; see also Snell et al, 1989 for sexual self-disclosure scales). Previously researched sexual behaviors and traumas that have been kept secret from romantic partners have included childhood sexual abuse (Gelik et al 2018;Montigny Gauthier et al 2019); HIV status (Wong et al 2017); sexual orientation (Malterud and Bjorkman 2016); infidelity (Miller 2016); and sexual behavior with same same-sex partners (Newman et al 2018).…”