Parents’ perceptions of ethical issues in adolescents’ HIV care and treatment at Temeke Regional Referral Hospital, Tanzania

Main Article Content

R S Joseph
G R Mahiti
G Frumence
C M Ulrich

Abstract





Background. Decisions to test, enrol and disclose HIV status are among the ethical challenges that may influence adherence to antiretroviral therapy (ART) and HIV care and treatment in adolescents living with HIV. In the Tanzanian setting, how parental perceptions of ethical issues affect adolescents’ adherence to HIV care and treatment is not well known.
Objective. To explore parental perceptions of ethical issues in adolescent HIV care and treatment.


Methods. The study employed a descriptive qualitative exploratory design and was conducted at Temeke Regional Referral Hospital in Dar es Salaam Care and Treatment Centre (CTC) in the Outpatient Department (OPD). The study population were parents and non-parent caregivers of HIV-infected adolescents 10 - 19 years of age. A total of 16 persons participated in semi-structured interviews after their consent was obtained. All interviews were audiotaped, transcribed verbatim in Swahili and back-translated into English. An inductive content analysis was used, and standards of qualitative rigour applied.


Results. Three qualitative themes emerged: balancing adolescents’ autonomy with parents’ desire to protect their children; parental dilemmas regarding disclosure of adolescents’ HIV status; and parental reasons for delayed disclosure.
Conclusion. Participants perceived that parental authority should override adolescents’ autonomy in HIV care and treatment. Disclosure of HIV status to adolescents is a challenge to parents. Delays in disclosure often occur because parents feel guilty and because they have fears of rejection by their adolescent children.





Article Details

How to Cite
Parents’ perceptions of ethical issues in adolescents’ HIV care and treatment at Temeke Regional Referral Hospital, Tanzania. (2022). South African Journal of Bioethics and Law, 15(2), 54-59. https://doi.org/10.7196/SAJBL.2022.v15i2.784
Section
Research Articles

How to Cite

Parents’ perceptions of ethical issues in adolescents’ HIV care and treatment at Temeke Regional Referral Hospital, Tanzania. (2022). South African Journal of Bioethics and Law, 15(2), 54-59. https://doi.org/10.7196/SAJBL.2022.v15i2.784

References

United Nations International Children’s Education Fund (UNICEF). HIV and AIDS.

https://www.unicef.org/tanzania/media/2436/file/HIV%20Programme%20

Fact%20Sheet.pdf (accessed 22 September 2022).

Sanga Z, Kapanda G, Msuya S, Mwangi R. Factors influencing the uptake of

voluntary HIV counseling and testing among secondary school students in

Arusha City, Tanzania: A cross sectional study. BMC Public Health 2015;15(1):452. 3. Nyogea D, Mtenga S, Henning L, et al. Determinants of antiretroviral adherence among HIV positive children and teenagers in rural Tanzania: A mixed methods

study. BMC Infect Dis 2015;15(1):28.

Martelli G, Antonucci R, Mukurasi A, Zepherine H, Nöstlinger C. Adherence

to antiretroviral treatment among children and adolescents in Tanzania: Comparison between pill count and viral load outcomes in a rural context of Mwanza region. PLoS ONE 2019;14(3):1-15. https://doi.org/10.1371/journal. pone.0214014

United Nations International Children’s Education Fund. HIV treatment, care and support for adolescents living with HIV in Eastern and Southern Africa. Geneva: UNICEF, 2021.

Knodel J, Kespichayawattana J, Saengtienchai C, Wiwatwanich S. The role of parents and family members in ART treatment adherence: Evidence from Thailand. Res Aging 2010;32(1):19-39. https://doi.org/10.1177/0164027509348130

Maradiegue A. Minor’s rights versus parental rights: Review of legal issues in adolescent health care. J Midwifery Women’s Health 2003;48(3):170-177.

Chenneville T, Sibille K, Bendell-Estroff D. Decisional capacity among minors with HIV: A model for balancing autonomy rights with the need for protection. Ethics Behav 2010;20(2): 83-94.

Mandalazi P, Bandawe C, Umar E. HIV disclosure: Parental dilemma in informing HIV infected children about their HIV status in Malawi. Malawi Med J 2014;26(4):101-104.

Ndiaye M, Nyasulu P, Nguyen H, et al. Risk factors for suboptimal antiretroviral therapy adherence in HIV-infected adolescents in Gaborone, Botswana: A pilot cross-sectional study. Patient Prefer Adherence 2013;7:891-895.

Kim H, Sefcik JS, Bradway C. Characteristics of qualitative descriptive studies: A systematic review. Res Nurs Health 2017;40(1):23-42.

Joseph RS, Mahiti GR, Frumence G, Ulrich CM. Qualitative inquiry into adolescents’ experience of ethical challenges during enrollment and adherence to antiretroviral therapy (ART) in Temeke Regional Referral Hospital, Tanzania. BMC Med Ethics 2022;23(1):22. https://doi.org/10.1186/s12910-022-00762-3.

Graneheim UH, Lundman B. Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004;24(2):105-112.

Kohlbacher F. The use of qualitative content analysis in case study research. Forum Qual Sozialforsch 2006;7(1). https://doi.org/10.17169/fqs-7.1.75

Holmes AGD. Researcher positionality - a consideration of its influence and place in qualitative research - a new researcher guide. Shanlax Int J Educ 2020;8(4):1-10. 16. Southern African HIV Clinicians Society. Guideline: Adherence to antiretroviral

therapy in adolescents and young adults. Johannesburg: SAHCS, 2017.

Grootens-Wiegers P, Hein IM, van den Broek JM, de Vries MC. Medical decision- making in children and adolescents: Developmental and neuroscientific aspects. BMC Pediatr 2017;17(1):1-10.

Ministry of Health and Social Welfare. Standard Operating Procedures for HIV Testing and Counselling (HTC) Services. Dar es Salaam, Tanzania: MOHSW, 2009.

Hartman RG. Adolescent decisional autonomy for medical care: Physician perceptions and practices. U Chi L Sch Roundtable 2001;8(5):87-134.

Ministry of Health, Community Development, Gender, Elderly, and Children, United Republic of Tanzania. National AIDS Control Program. National Guidelines for the Management of HIV and AIDS. MOHCDGEC, April 2019.

Sohn AH, Hazra R. The changing epidemiology of the global paediatric HIV epidemic: Keeping track of perinatally HIV-infected adolescents. J Int AIDS Soc 2013; 16(1):18555.

Simoni JM, Montgomery A, Martin E, New M, Demas PA, Rana S. Adherence to antiretroviral therapy for pediatric HIV infection: A qualitative systematic review with recommendations for research and clinical management. Pediatrics 2007;119(6).e1371-e1383.

AbongomeraG,MusiimeACV,LamordeCCM.Improvedadherencetoantiretroviral therapy observed among HIV-infected children whose caregivers had positive beliefs in medicine in sub-Saharan Africa. AIDS Behav 2017;21(2):441-449.

Das A, Detels R, Javanbakht M, Panda S. Issues around childhood disclosure of HIV status - findings from a qualitative study in West Bengal, India. Child Care Health Dev 2016;42(4):553-564. https://doi.org/10.1111/cch.12338

Madiba S, Diko C. The consequences of delaying telling children with perinatal HIV about their diagnosis as perceived by healthcare workers in the Eastern Cape; A qualitative study. Children 2020;7(12):289.

Madiba S, Mokgatle M. Perceptions and experiences about self-disclosure of HIV status among adolescents with perinatal acquired HIV in poor-resourced communities in South Africa. AIDS Res Treat 2016:2607249.

Hayfron-Benjamin A, Obiri-Yeboah D, Ayisi-Addo S, Siakwa PM, Mupepi S. HIV diagnosis disclosure to infected children and adolescents; Challenges of family caregivers in the Central Region of Ghana. BMC Pediatr 2018;18(1):365.

Madiba S, Mokwena K. Caregivers’ barriers to disclosing the HIV diagnosis to infected children on antiretroviral therapy in a resource-limited district in South Africa: A grounded theory study. AIDS Res Treat 2012:402403.

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