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Illness Narratives of Children Living with HIV Who Do Not Know Their HIV Status in Ghana: I’m Sick, But I Don’t Know the Sickness—A Qualitative Study

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Abstract

Despite available guidelines for disclosure of HIV status to children, most children living with HIV are unaware of their diagnosis. We sought to characterize the concepts of illness and treatment among children living with HIV who do not know their status. As part of the Sankofa trial we interviewed 435 children aged 6–18 enrolled in clinical care at pediatric HIV clinics at two teaching hospitals in Ghana. Theoretic thematic analysis generated themes among responses. The children believe they come to the clinic to collect medication, to address specific symptoms, to prevent and treat ‘sickness’, or as part of their routine. Most children learned of their ‘illness’ from a family member. A majority (73.5%) of children had never talked about their ‘illness’ with anyone else; many feared consequences. Children living with HIV who do not know their status exhibit signs of anticipated and internalized stigma regarding their unknown ‘illness.’ An understanding of the way children conceptualize their illness has implications for health promotion and the provision of appropriate information to children living with HIV.

ClinicalTrials.gov Identifier NCT01701635

Resumen

A pesar de las pautas disponibles para la divulgación del estado del VIH a los niños, la mayoría de los niños que viven con el VIH desconocen su diagnóstico. Intentamos describir los conceptos de enfermedad y tratamiento entre los niños que viven con el VIH que no conocen su estado de infeccion. Como parte del ensayo Sankofa, entrevistamos a 435 niños de 6 a 18 años inscritos en atención clínica cuidado en clínicas pediátricas de VIH en dos hospitales docentes en Ghana. El análisis temático teórico generó temas entre las respuestas obtenidas. Los niños creen que vienen a la clínica a recoger medicamentos, a tratar síntomas específicos, a prevenir y tratar “condiciones” o como parte de su cuidado rutinario. A traves de entrevistas, aprendimos que la mayoría de los niños aprendieron de su "enfermedad" de un miembro de la familia. Esta mayoría (73.5%) nunca habían hablado sobre su "enfermedad" con nadie más; debido a muchas consecuencias temidas. Los niños que viven con VIH que no conocen su estado, exhiben signos de estigma anticipado e internalizado con respecto a su "enfermedad" desconocida. El entender la forma en que los niños conceptualizan su enfermedad tiene implicaciones para la promoción de la salud y el suministro de información adecuada a los niños que viven con el VIH.

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References

  1. Vreeman RC, Gramelspacher AM, Gisore PO, Scanlon ML, Nyandiko WM. Disclosure of HIV status to children in resource-limited settings: a systematic review. J Int AIDS Soc. 2013;16(1):18466.

    Article  PubMed  PubMed Central  Google Scholar 

  2. Paterson DL, Swindells S, Mohr J, Brester M, Vergis EN, Squier C, et al. Adherence to protease inhibitor therapy and outcomes in patients with HIV infection. Ann Intern Med. 2000;133(1):21–30.

    Article  CAS  PubMed  Google Scholar 

  3. Judd A, Chappell E, Turkova A, Le Coeur S, Noguera-Julian A, Goetghebuer T, et al. Long-term trends in mortality and AIDS-defining events after combination ART initiation among children and adolescents with perinatal HIV infection in 17 middle-and high-income countries in Europe and Thailand: a cohort study. PLoS Med. 2018;15(1):e1002491.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Nsanzimana S, Remera E, Kanters S, Chan K, Forrest JI, Ford N, et al. Life expectancy among HIV-positive patients in Rwanda: a retrospective observational cohort study. Lancet Glob Health. 2015;3(3):e169–e177177.

    Article  PubMed  Google Scholar 

  5. Wilfert C, Beck D, Fleischman A, Mofenson L, Pantell R, Schonberg SK, et al. Disclosure of illness status to children and adolescents with HIV infection. Pediatrics. 1999;103(1):164–6.

    Article  Google Scholar 

  6. Lipson M. Disclosure of diagnosis to children with human immunodeficiency virus or acquired immunodeficiency syndrome. J Dev Behav Pediatr. 1994;15(3 Suppl):S61–S6565.

    CAS  PubMed  Google Scholar 

  7. Mellins CA, Brackis-Cott E, Dolezal C, Richards A, Nicholas SW, Abrams EJ. Patterns of HIV status disclosure to perinatally HIV-infected children and subsequent mental health outcomes. J Clin Child Psychol Psychiatr. 2002;7(1):101–14.

    Article  Google Scholar 

  8. Nabukeera-Barungi N, Kalyesubula I, Kekitiinwa A, Byakika-Tusiime J, Musoke P. Adherence to antiretroviral therapy in children attending Mulago Hospital, Kampala. Ann Trop Paediatr. 2007;27(2):123–31.

    Article  PubMed  Google Scholar 

  9. World Health Organization. Guideline on HIV disclosure counselling for children up to 12 years of age. Geneva: World Health Organization; 2011.

    Google Scholar 

  10. Nastasi BK, Schensul JJ, Schensul SL, Mekki-Berrada A, Pelto PJ, Maitra S, et al. A model for translating ethnography and theory into culturally constructed clinical practices. Cult Med Psychiatr. 2015;39(1):92–120.

    Article  Google Scholar 

  11. Kleinman A. Suffering, healing and the human condition. In: Dulbecco R, editor. Encyclopedia of human biology. New York: Academic Press; 1988.

    Google Scholar 

  12. Frank AW. The wounded storyteller: body, illness, and ethics. Chicago: University of Chicago Press; 2013.

    Google Scholar 

  13. Wiener L, Mellins CA, Marhefka S, Battles HB. Disclosure of an HIV diagnosis to children: history, current research, and future directions. J Dev Behav Pediatr. 2007;28(2):155–66.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Bibace R, Walsh ME. Development of children's concepts of illness. Pediatrics. 1980;66(6):912–7.

    CAS  PubMed  Google Scholar 

  15. Instone SL. Perceptions of children with HIV infection when not told for so long: implications for diagnosis disclosure. J Pediatr Health Care. 2000;14(5):235–43.

    CAS  PubMed  Google Scholar 

  16. Corneli A, Vaz L, Dulyx J, Omba S, Rennie S, Behets F. The role of disclosure in relation to assent to participate in HIV-related research among HIV-infected youth: a formative study. J Int AIDS Soc. 2009;12(1):17.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Vaz LM, Eng E, Maman S, Tshikandu T, Behets F. Telling children they have HIV: lessons learned from findings of a qualitative study in sub-Saharan Africa. AIDS Pat Care STDS. 2010;24(4):247–56.

    Article  Google Scholar 

  18. Žaloudíková I. Children’s conceptions of health, illness, death and the anatomy of the human body. School Health. 2010;21:123–40.

    Google Scholar 

  19. Abadía-Barrero CE, LaRusso MD. The disclosure model versus a developmental illness experience model for children and adolescents living with HIV/AIDS in Sao Paulo, Brazil. AIDS Pat Care STDs. 2006;20(1):36–433.

    Article  Google Scholar 

  20. Paintsil E, Renner L, Antwi S, Dame J, Enimil A, Ofori-Atta A, et al. HIV knowledge, stigma, and illness beliefs among pediatric caregivers in Ghana who have not disclosed their child's HIV status. AIDS Care. 2015;27(Suppl 1):18–27.

    Article  PubMed  PubMed Central  Google Scholar 

  21. Reynolds NR, Ofori-Atta A, Lartey M, Renner L, Antwi S, Enimil A, et al. SANKOFA: a multisite collaboration on paediatric HIV disclosure in Ghana. AIDS. 2015;29:S35.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Anderson L, Lofland J, Lofland L, Snow D. Analyzing social setting: a guide to qualitative observation and analysis. Belmont, CA: Wadsworth Publishing Co; 2006.

    Google Scholar 

  23. Maguire M, Delahunt B. Doing a thematic analysis: a practical, step-by-step guide for learning and teaching scholars. All Ireland J Teach Learn Higher Educ. 2017;9(3):3351.

    Google Scholar 

  24. Saunders B, Sim J, Kingstone T, Baker S, Waterfield J, Bartlam B, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant. 2018;52(4):1893–907.

    Article  PubMed  Google Scholar 

  25. Bree RT, Gallagher G. Using Microsoft Excel to code and thematically analyse qualitative data: a simple, cost-effective approach. AISHE-J. 2016;8:2.

    Google Scholar 

  26. Paintsil E, Renner L, Antwi S, Dame J, Enimil A, Ofori-Atta A, et al. HIV knowledge, stigma, and illness beliefs among pediatric caregivers in Ghana who have not disclosed their child's HIV status. AIDS Care. 2015;27(sup1):18–27.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Ofori-Atta A, Reynolds NR, Antwi S, Renner L, Nichols JS, Lartey M, et al. Prevalence and correlates of depression among caregivers of children living with HIV in Ghana: findings from the Sankofa pediatric disclosure study. AIDS Care. 2019;31(3):283–92.

    Article  PubMed  Google Scholar 

  28. World Health Organization. WHO case definitions of HIV for surveillance and revised clinical staging and immunological classification of HIV-related disease in adults and children. Geneva: World Health Organization; 2007.

    Google Scholar 

  29. Selik RM, Mokotoff ED, Branson B, Owen SM, Whitmore S, Hall HI. Revised surveillance case definition for HIV infection—United States, 2014. Morb Mortal Wkl Rep. 2014;63(3):1–10.

    Google Scholar 

  30. Kallem S, Renner L, Ghebremichael M, Paintsil E. Prevalence and pattern of disclosure of HIV status in HIV-infected children in Ghana. AIDS Behav. 2011;15(6):1121–7.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Oberdorfer P, Puthanakit T, Louthrenoo O, Charnsil C, Sirisanthana V, Sirisanthana T. Disclosure of HIV/AIDS diagnosis to HIV-infected children in Thailand. J Paediatr Child Health. 2006;42(5):283–8.

    Article  PubMed  Google Scholar 

  32. Kouyoumdjian FG, Meyers T, Mtshizana S. Barriers to disclosure to children with HIV. J Trop Pediatr. 2005;51(5):285–7.

    Article  PubMed  Google Scholar 

  33. Abubakar A, Van de Vijver FJ, Fischer R, Hassan AS, Gona JK, Dzombo JT, et al. ‘Everyone has a secret they keep close to their hearts’: challenges faced by adolescents living with HIV infection at the Kenyan coast. BMC Public Health. 2016;16(1):197.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Chan BT, Tsai AC. HIV stigma trends in the general population during antiretroviral treatment expansion: analysis of 31 countries in sub-Saharan Africa, 2003–2013. J Acquir Immune Defic Syndr. 2016;72(5):558–64.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  35. Earnshaw VA, Smith LR, Chaudoir SR, Amico KR, Copenhaver MMJA. HIV stigma mechanisms and well-being among PLWH: a test of the HIV stigma framework. AIDS Behav. 2013;17(5):1785–95.

    Article  PubMed  PubMed Central  Google Scholar 

  36. Earnshaw VA, Quinn DM, Park CL. Anticipated stigma and quality of life among people living with chronic illnesses. Chronic Illness. 2012;8(2):79–88.

    Article  PubMed  Google Scholar 

  37. Bogart LM, Cowgill BO, Kennedy D, Ryan G, Murphy DA, Elijah J, et al. HIV-related stigma among people with HIV and their families: a qualitative analysis. AIDS Behav. 2008;12(2):244–54.

    Article  PubMed  Google Scholar 

  38. Waechter EH. Children's awareness of fatal illness. Am J Nurs. 1971;7:1168–72.

    CAS  PubMed  Google Scholar 

  39. Ashurst DI, Bamberg E, Barrett J, Bisno A, Burke A, Chambers DC, et al. Southern California ordinal scales of development. North Hollywood (CA): Foreworks; 1985.

    Google Scholar 

Download references

Acknowledgements

We thank the Sankofa Project caregiver and child dyads for their participations. We are grateful to the staff at Pediatric AIDS Clinics at Korle-Bu and Komfo Anokye Teaching Hospitals and the Ghana–Yale Partnership for Global Health for their support. Members of the Sankofa Project Team: Elijah Paintsil, Geliang Gan, and Tassos Kyriakides, Yale University, USA; Nancy Reynolds, Johns Hopkins University, USA; Lorna Renner, Margaret Lartey, Angela Ofori-Atta, Jonas Tettey Kusah, Joyceline Assimeng, William Obeng, Obedia Akweley Seaneke, Dramani Yakubu, and Kevin Bonsu, Korle-Bu Teaching Hospital, Accra, Ghana; Sampson Antwi, Kofi Aikins Amissah, Anthony Enimil, Amina Alhassan, and Irene Pokuaa Ofori, Komfo Anokye Teaching Hospital, Kumasi, Ghana; Ann Christine Catlin, Sumudinie Fernando, Ruwan Egoda Gamage, Ruchith Fernando, and Sudheera Fernando, Purdue University, USA.

Funding

This study was funded by a Grant from NIH/NICHD (R01HD074253). HF was supported by the Doris Duke Charitable Foundation through a grant supporting the Doris Duke International Clinical Research Fellows Program at Yale School of Medicine.

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Authors and Affiliations

  1. Department of Pediatrics, Yale School of Medicine, New Haven, CT, USA

    Heather Farthing & Elijah Paintsil

  2. Johns Hopkins School of Nursing, Baltimore, MD, USA

    Nancy R. Reynolds

  3. Department of Child Health, School of Medical Sciences, Kwame Nkrumah University of Science and Technology and Komfo Anokye Teaching Hospital, Kumasi, Ghana

    Sampson Antwi, Amina Alhassan, Irene Pokuaa Ofori & Kofi Aikins Amissah

  4. Department of Child Health, University of Ghana School of Medicine and Dentistry and Korle-Bu Teaching Hospital, Accra, Ghana

    Lorna Renner & Jonas Tettey Kusah

  5. Department of Medicine, University of Ghana School of Medicine and Dentistry and Korle-Bu Teaching Hospital, Accra, Ghana

    Margaret Lartey

  6. Departments of Pharmacology & Public Health, Yale School of Medicine, New Haven, CT, USA

    Elijah Paintsil

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  1. Heather Farthing
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Correspondence to Elijah Paintsil.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

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Farthing, H., Reynolds, N.R., Antwi, S. et al. Illness Narratives of Children Living with HIV Who Do Not Know Their HIV Status in Ghana: I’m Sick, But I Don’t Know the Sickness—A Qualitative Study. AIDS Behav 24, 3225–3231 (2020). https://doi.org/10.1007/s10461-020-02884-4

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