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.

KEYWORDS:

• HIV
• disclosure
• parent–child relationship
• China
• stigma
• culture

Acknowledgements

We would like to thank all parents and adolescents who gave their time to take part in our study, as well as staff from the Dali Second People’s Hospital for their assistance and support during data collection. We also thank Ms. Skye Wong, Ms. Emilie Wong, Ms. Bonnie Wong and Mr. Sam Galler for their assistance in the interviews and Mr. Sam Galler for his advice on improvements to the manuscript.

Competing interests

Dr. Jianbo Zhang runs the HIV care and treatment unit at Dali Second People’s Hospital, Yunnan.

Ethics

Ethical approval for this study was granted by the Institutional Review Board of the University of Hong Kong/Hospital Authority Hong Kong West Cluster (Reference Number: UW15-008).

Contributory statement

WW and JBZ were responsible for overseeing the whole study while EH made considerable contributions to the methodology and designing of the interview tools. JBZ liaised with the informants. YPZ and CSW conducted the transcription and some analysis. HM was responsible for cleaning the interview materials as well as analysis and interpretation of the results which were also overseen by EH and WW. HM and EH were mainly responsible for drafting the manuscript, with help from YPZ and CSW. All authors have helped to review, finalize and approve the manuscript before submission.

Data sharing statement

No additional data are available.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by The Work Station of Academician Zheng Yi (Project number 2014IC027)