Back
 WJA  Vol.2 No.3 , September 2012
Patterns of HIV Diagnosis Disclosure to Infected Children and Family Members: Data from a Paediatric Antiretroviral Program in South Africa
Abstract: The study examined the patterns of disclosing the HIV diagnosis to infected children and family members, and determined the demographic characteristics associated with disclosure. Semi structured interviews were conducted with caregivers of HIV infected children aged 4 - 17 years receiving antiretroviral treatment (ART). A total of 149 caregivers were recruited from a paediatric HIV clinic of a district hospital in South Africa. Caregivers reported that 59 (39.6%) children were told their HIV diagnosis, and majority 36 (61%) were informed of the diagnosis by people other than their biological mothers. Older child age was a determining factor for HIV disclosure to children, 22 (37.2%) learned of their HIV diagnosis between 11 and 16 years. The mean age of disclosed children was 10.6 years. Caregivers took about 3 years after the initial HIV diagnosis to disclose to children, while 143 (99.3%) caregivers reported that disclosure to family members happened immediately after the child's HIV diagnosis. About 28 (31.5%) non-disclosed caregivers planned to disclose to the child between 12 and 18 years, while 13 (14.6%) were not sure about the ideal age to disclose to the child. The lack of consensus regarding the appropriate age for disclosure and the delayed age for future disclosure, suggest that despite increased access to ART for children, there are still significant barriers to disclosing HIV to infected children in this setting. There is a need for health care providers to support caregivers to disclose shortly after diagnosis especially in view of the older age of diagnosis among children enrolled in ART program in this setting.
Cite this paper: S. Madiba, "Patterns of HIV Diagnosis Disclosure to Infected Children and Family Members: Data from a Paediatric Antiretroviral Program in South Africa," World Journal of AIDS, Vol. 2 No. 3, 2012, pp. 212-221. doi: 10.4236/wja.2012.23027.
References

[1]   O. Shisana, T. Rehle, L. C. Simbayi, K. Zuma, J. Jooste, et al., “South African National HIV Prevalence, Incidence, Behaviour and Communication Survey 2008: A Turning Tide among Teenagers?” HSRC Press, Cape Town, 2009. http://www.hsrc.ac.za/Document-3239.phtml

[2]   UNAIDS, “Report on the Global AIDS Epidemic,” UNAIDS, Geneva, 2009. http://www.unaids.org/en/dataanalysis/epidemiology/2009aidsepidemicupdate/

[3]   R. Salter-Goldie, S. M. King, M. L. Smith, A. Bitnun, J. Brophy, et al., “Disclosing HIV Diagnosis to Infected Children: A Health Care Team’s Approach,” Vulnerable Children and Youth Studies: An International Interdisciplinary Journal for Research, Policy and Care, Vol. 2, No. 1, 2007, pp. 12-16.

[4]   C. Thorne, M. L. Newell, F. A. Botet, A. B. Bohlin, A. Ferrazin, et al., “Older Children and Adolescents Surviving with Vertically Acquired HIV Infection,” Journal of Acquired Immune Deficiency Syndromes, Vol. 29, No. 4, 2002, pp. 396-401.

[5]   L. P. Wiener, C. A. P. Mellins, S. P. Marhefka and H. B. P. Battles, “Disclosure of an HIV Diagnosis to Children: History, Current Research, and Future Directions,” Journal of Developmental & Behavioral Pediatrics, Vol. 28, No. 2, 2007, pp. 155-166. doi:10.1097/01.DBP.0000267570.87564.cd

[6]   S. Biadgilign, A. Deribew and A. E. H. K. D. Amberbir, “Factors Associated with HIV/AIDS Diagnostic Disclosure to HIV Infected Children Receiving HAART: A Multi-Center Study in Addis Ababa, Ethiopia,” PLoS One, Vol. 6, No. 3, 2011, Article ID: e17572. doi:10.1371/journal.pone.0017572

[7]   M. Ferris, K. Burau, A. M. Schweitzer, S. Mihale, N. Murray, et al., “The Influence of Disclosure of HIV Diagnosis on Time to Disease Progression in a Cohort of Romanian Children and Teens,” AIDS Care: Psychological and Socio-Medical Aspects of AIDS/HIV, Vol. 19, No. 9, 2007, pp. 1088-1094.

[8]   J. Rujumba, C. Mbasaalaki-Mwaka and G. Ndeezi, “Challenges Faced by Health Workers in Providing Counselling Services to HIV-Positive Children in Uganda: A Descriptive Study,” Journal of the International AIDS Society, Vol. 13, No. 1, 2010, p. 9. doi:10.1186/1758-2652-13-9

[9]   L. Vaz, A. Corneli, J. Dulyx, S. Rennie, S. Omba, et al., “The Process of HIV Status Disclosure to HIV-Positive Youth in Kinshasa, Democratic Republic of the Congo,” AIDS Care: Psychological and Socio-Medical Aspects of AIDS/HIV, Vol. 20, No. 7, 2007, pp. 842-852.

[10]   P. J. Bachanas, K. A. Kullgren, K. S. Schwartz, B. Lanier, J. S. McDaniel, et al., “Predictors of Psychological Adjustment in School-Age Children Infected with HIV,” Journal of Pediatric Psychology, Vol. 26, No. 6, 2001, pp. 343-352. doi:10.1093/jpepsy/26.6.343

[11]   W. Bikaako-Kajura, E. Luyirika, D. W. Purcell, J. Downing, F. Kaharuza, et al., “Disclosure of HIV Status and Adherence to Daily Drug Regimens among HIV-Infected Children in Uganda,” AIDS and Behavior, Vol. 10, 2006, pp. 85-93. doi:10.1007/s10461-006-9141-3

[12]   I. Blasini, C. Chantry, C. Cruz, L. Ortiz, I. Salabarría, et al., “Disclosure Model for Pediatric Patients Living with HIV in Puerto Rico: Design, Implementation, and Evaluation,” Journal of Developmental & Behavioral Pediatrics, Vol. 25, No. 3, 2004, pp. 181-189. doi:10.1097/00004703-200406000-00007

[13]   L. Chi-Ling and R. Johann-Liang, “Disclosure of the Diagnosis of HIV/AIDS to Children Born of HIV-Infected Mothers,” AIDS Patient Care and STDs, Vol. 13, No. 1, 1999, pp. 41-45. doi:10.1089/apc.1999.13.41

[14]   I. Funck-Brentano, D. Costagliola, N. Seibel, E. Straub, M. Tardieu, et al., “Patterns of Disclosure and Perceptions of the Human Immunodeficiency Virus in Infected Elementary School-age Children,” Archives of Pediatric Adolescence Medicine, Vol. 151, No. 10, 1997, pp. 978-985. doi:10.1001/archpedi.1997.02170470012002

[15]   S. Kallem, L. Renner, M. Ghebremichael and E. Paintsil, “Prevalence and Pattern of Disclosure of HIV Status in HIV-Infected Children in Ghana,” AIDS and Behavior, Vol. 15, No. 6, 2010, pp. 1121-1127. doi:10.1007/s10461-010-9741-9

[16]   A. Lesch, L. Swartz, A. Kagee, K. Moodley, Z. Kafaar, et al., “Paediatric HIV/AIDS Disclosure: Towards a Developmental and Process-Oriented Approach,” AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, Vol. 19, No. 6, 2007, pp. 811-816.

[17]   P. Oberdorfer, T. Puthanakit, O. Louthrenoo, C. Charnsil, V. Sirisanthana, et al., “Disclosure of HIVAIDS Diagnosis to HIV-Infected Children in Thailand,” Journal of Paediatrics and Child Health, Vol. 42, No. 5, 2006, pp. 283-288. doi:10.1111/j.1440-1754.2006.00855.x

[18]   S. Waugh, “Parental Views on Disclosure of Diagnosis to Their HIV-Positive Children,” AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, Vol. 15, No. 2, 2003, pp. 169-176.

[19]   D. Dematteo, C. Harrison, C. Arneson, R. S. Goldie, A. Lefebvre, et al. “Disclosing HIV/AIDS to Children: The Paths Families Take to Truth Telling,” Psychology, Health & Medicine, Vol. 7, No. 3, 2002, pp. 339-356. doi:10.1080/13548500220139395

[20]   S. Biadgilign, A. Deribew, A. Amberbir and K. Deribe, “Barriers and Facilitators to Antiretroviral Medication Adherence among HIV-Infected Paediatric Patients in Ethiopia: A Qualitative Study,” Journal of Social Aspects of HIV/AIDS Research Alliance/SAHARA, Human Sciences Research Council, Vol. 6, No. 4, 2009, pp. 148-154.

[21]   L. M. E. Vaz, E. Eng, S Maman, T. Tshikandu and F. Behets, “Telling Children They Have HIV: Lessons Learned from Findings of a Qualitative Study in Sub-Saharan Africa,” AIDS Patient Care and STDs, Vol. 24, No. 4, 2010, pp. 247-256. doi:10.1089/apc.2009.0217

[22]   F. G. Kouyoumdjian, T. Meyers and S. Mtshizana, “Barriers to Disclosure to Children with HIV,” Journal of Tropical Pediatric, Vol. 51, No. 5, 2005, pp. 285-287. doi:10.1093/tropej/fmi014

[23]   K. Moodley, L. Myer, D. Michaels and M. Cotton, “Pediatric HIV Disclosure in South Africa; Caregivers’ Perspectives on Discussing HIV with Infected Children,” South African Medical Journal, Vol. 96, No. 3, 2006, pp. 201-204.

[24]   L. Myer, K. Moodley, F. Hendricks and M. Cotton, “Healthcare Providers’ Perspectives on Discussing HIV Status with Infected Children,” Journal of Tropical Pediatric, Vol. 52, No. 4, 2006, pp. 293-295.

[25]   E. K. Santamaria, C. Dolezal, S. L. Marhefka, S. Hoffman, Y. Ahmed, et al., “Psychosocial Implications of HIV Serostatus Disclosure to Youth with Perinatally Acquired HIV,” AIDS Patient Care and STDs, Vol. 25, No. 4, 2011, pp. 257-264. doi:10.1089/apc.2010.0161

[26]   S. Instone, “Perceptions of Children with HIV Infection When Not Told for So Long: Implications for Diagnosis Disclosure,” Journal of Pediatric Health Care, Vol. 14, No. 5, 2000, pp. 235-243.

[27]   W. M. Nehring, F. R. Lashley and K. Malm, “Disclosing the Diagnosis of Pediatric HIV Infection: Mothers’ Views,” Journal for Specialists in Pediatric Nursing, Vol. 5, No. 1, 2000, pp. 5-14. doi:10.1111/j.1744-6155.2000.tb00081.x

[28]   C. E. Abadía-Barrero and M. D. LaRusso, “The Disclosure Model versus a Developmental Illness Experience Model for Children and Adolescents Living with HIV/AIDS in S?o Paulo, Brazil,” AIDS Patient Care and STDs, Vol. 20, No. 1, 2006, pp. 36-43.

[29]   P. Lester, M. Chesney, M. Cooke, R. Weiss, P. Whalley, et al., “When the Time Comes To Talk About HIV: Factors Associated With Diagnostic Disclosure and Emotional Distress in HIV-Infected Children,” Journal of Acquired Immune Deficiency Syndromes, Vol. 31, No. 3, 2002, pp. 309-317. doi:10.1097/00126334-200211010-00006

[30]   L. M. E. Vaz, S. Maman, E. Eng, O. A. Barbarin, T. Tshikandu, et al., “Patterns of Disclosure of HIV Status to Infected Children in a Sub-Saharan African Setting,” Journal of Developmental & Behavioral Pediatrics, Vol. 32, No. 4, 2011, pp. 307-315. doi:10.1097/DBP.0b013e31820f7a47

[31]   G. J. Domek, “Debunking Common Barriers to Pediatric HIV Disclosure,” Journal of Tropical Pediatric, Vol. 56, No. 6, 2010, pp. 440-442. doi:10.1093/tropej/fmq013

[32]   T. P. Nelms and V. L. Zeigler, “A Study to Develop a Disclosure to Children Intervention for HIV-Infected Women,” Journal of the Association of Nurses in AIDS Care, Vol. 19, No. 6, 2008, pp. 461-469. doi:10.1016/j.jana.2008.05.005

[33]   R. C. Vreeman, W. M. Nyandiko, S. O. Ayaya, E. G. Walumbe, D. G. Marrero, et al., “Factors Sustaining Pediatric Adherence to Antiretroviral Therapy in Western Kenya,” Qualitative Health Research, Vol. 19, No. 12, 2009, pp. 1716-1729. doi:10.1177/1049732309353047

[34]   S. W. Ledlie, “Diagnosis Disclosure by Family Caregivers to Children Who Have Perinatally Acquired HIV Disease: When the Time Comes,” PhD Thesis, University of Pennsylvania, Philadelphia, 1998.

[35]   StataCorp., “Stata Statistical Software, Release 10.” StataCorp LP, College Station, 2007.

[36]   S. W. Ledlie, “Diagnosis Disclosure by Family Caregivers to Children Who Have Perinatally Acquired HIV Disease: When the Time Comes,” Nursing Research, Vol. 48, No. 3, 1999, pp. 141-149. doi:10.1097/00006199-199905000-00004

[37]   C. A. Mellins, E. Brackis-Cott, C. Dolezal, A. Richards, S. W. Nicholas, et al., “Patterns of HIV Status Disclosure to Perinatally HIV-Infected Children and Subsequent Mental Health Outcomes,” Clinical Child Psychology and Psychiatry, Vol. 7, No. 1, 2002, pp. 101-114. doi:10.1177/1359104502007001008

[38]   S. Arun, A. Singh, R. Lodha and S. Kabra, “Disclosure of the HIV Infection Status in Children,” Indian Journal of Pediatrics, Vol. 76, No. 8, 2009, pp. 805-808. doi:10.1007/s12098-009-0177-z

[39]   A. Siripong, T. Bunupuradah, W. Apateerapong, P. Boonrak, C. Pancharoen, et al., “Attitudes of Thai Caregivers of Children with HIV Infection towards HIV Disclosure,” Vulnerable Children and Youth Studies: An International Interdisciplinary Journal for Research, Policy and Care, Vol. 2, No. 3, 2007, pp. 191-197.

[40]   C. Merzel, N. Van Devanter and M. Irvine, “Adherence to Antiretroviral Therapy among Older Children and Adolescents with HIV: A Qualitative Study of Psychosocial Contexts,” AIDS Patient Care and STDs, Vol. 22, No. 12, 2008, pp. 977-987. doi:10.1089/apc.2008.0048

[41]   V. Boon-Yasidhi, U. Kottapat, Y. Durier, N. Plipat, W. Phongsamart, et al., “Diagnosis Disclosure in HIV-Infected Thai Children,” Journal of Medical Association of Thailand, Vol. 88, Suppl. 8, 2005, pp. S100-S105.

[42]   N?stlinger, T. Jonckheer, E. de Belder, E. van Wijngaerden, C. Wylock, et al., “Families Affected by HIV: Parents’ and Children’s Characteristics and Disclosure to the Children,” AIDS Care: Psychological and Socio-Medical Aspects of AIDS/HIV, Vol. 16, No. 5, 2004, pp. 641-648.

[43]   J. Rwemisisi, B. Wolff, A. Coutinho, H. Grosskurth, J. Whitworth, “‘What If They Ask How I Got It?’ Dilemmas of Disclosing Parental HIV Status and Testing Children for HIV in Uganda,” Health Policy Plan, Vol. 23, No. 1, 2008, pp. 36-42. doi:10.1093/heapol/czm040

[44]   F. Hejoaka, “Care and Secrecy: Being a Mother of Children Living with HIV in Burkina Faso,” Social Science & Medicine, Vol. 69, No. 6, 2009, pp. 869-876. doi:10.1016/j.socscimed.2009.05.041

[45]   P. Lester, M. Chesney, M. Cooke, P. Whalley, B. Perez, et al., “Diagnostic Disclosure to HIV-Infected Children: How Parents Decide When and What to Tell,” Clinical Child Psychology and Psychiatry, Vol. 7, No. 1, 2002, pp. 85-99. doi:10.1177/1359104502007001007

[46]   F. Hejoaka, “HIV Disclosure to Children in Low-Resource Countries: A Forgotten Issue on the International AIDS Policy Agenda,” AIDS 2008, 17th International AIDS Conferences, Mexico City, 3-8 August 2008.

[47]   A. R. Moore and Williamson, “Disclosure of Children’s Positive Serostatus to Family and Nonfamily Members: Informal Caregivers in Togo, West Africa,” AIDS Research and Treatment, 2011, 595301.

 
 
Top