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Published in: AIDS and Behavior 5/2010

Open Access 01-10-2010 | Original Paper

Parents’ Disclosure of Their HIV Infection to Their Children in the Context of the Family

Authors: David P. Kennedy, Burton O. Cowgill, Laura M. Bogart, Rosalie Corona, Gery W. Ryan, Debra A. Murphy, Theresa Nguyen, Mark A. Schuster

Published in: AIDS and Behavior | Issue 5/2010

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Abstract

We interviewed 33 HIV-infected parents from the HIV Cost and Services Utilization Study (HCSUS), 27 of their minor children, 19 adult children, and 15 caregivers about the process of children learning that their parents were HIV positive. We summarize the retrospective descriptions of parents’ disclosure of their HIV status to their children, from the perspective of multiple family members. We analyzed transcripts of these interviews with systematic qualitative methods. Both parents and children reported unplanned disclosure experiences with positive and negative outcomes. Parents sometimes reported that disclosure was not as negative as they feared. However, within-household analysis showed disagreement between parents and children from the same household regarding disclosure outcomes. These findings suggest that disclosure should be addressed within a family context to facilitate communication and children’s coping. Parents should consider negative and positive outcomes, unplanned disclosure and children’s capacity to adapt after disclosure when deciding whether to disclose.
Literature
1.
go back to reference Armistead L, Forehand R. For whom the bell tolls: parenting decisions and challenges faced by mothers who are HIV seropositive. Clin Psychol-Sci Pr. 1995;2(3):239–50.CrossRef Armistead L, Forehand R. For whom the bell tolls: parenting decisions and challenges faced by mothers who are HIV seropositive. Clin Psychol-Sci Pr. 1995;2(3):239–50.CrossRef
2.
go back to reference Corona R, Beckett MK, Cowgill BO, Elliott MN, Murphy DA, Zhou AJ, et al. Do children know their parent’s HIV-status? Parental reports of child awareness in a nationally representative sample. Ambul Pediatr. 2006;6(3):138–44.CrossRefPubMed Corona R, Beckett MK, Cowgill BO, Elliott MN, Murphy DA, Zhou AJ, et al. Do children know their parent’s HIV-status? Parental reports of child awareness in a nationally representative sample. Ambul Pediatr. 2006;6(3):138–44.CrossRefPubMed
3.
go back to reference Schrimshaw EW, Siegel K. HIV-infected mothers’ disclosure to their uninfected children: rates, reasons, and reactions. J Soc Pers Relat. 2002;19(1):19–43.CrossRef Schrimshaw EW, Siegel K. HIV-infected mothers’ disclosure to their uninfected children: rates, reasons, and reactions. J Soc Pers Relat. 2002;19(1):19–43.CrossRef
4.
go back to reference Hazard Vallerand A, Hough E, Pittiglio L, Marvicsin D. The process of disclosing HIV serostatus between HIV-positive mothers and their HIV-negative children. AIDS Patient Care STDs. 2005;19(2):100–9.CrossRef Hazard Vallerand A, Hough E, Pittiglio L, Marvicsin D. The process of disclosing HIV serostatus between HIV-positive mothers and their HIV-negative children. AIDS Patient Care STDs. 2005;19(2):100–9.CrossRef
5.
go back to reference Nöstlinger C, Bartoli G, Gordillo V, Roberfroid D, Colebunders R. Children and adolescents living with HIV positive parents: emotional and behavioural problems. Vulnerable Child Youth Stud. 2006;1(1):29.CrossRef Nöstlinger C, Bartoli G, Gordillo V, Roberfroid D, Colebunders R. Children and adolescents living with HIV positive parents: emotional and behavioural problems. Vulnerable Child Youth Stud. 2006;1(1):29.CrossRef
6.
go back to reference Lee MB, Rotheram-Borus MJ. Parents’ disclosure of HIV to their children. AIDS. 2002;16(16):2201–7.CrossRefPubMed Lee MB, Rotheram-Borus MJ. Parents’ disclosure of HIV to their children. AIDS. 2002;16(16):2201–7.CrossRefPubMed
7.
go back to reference Murphy DA, Marelich WD, Dello Stritto ME, Swendeman D, Witkin A. Mothers living with HIV/AIDS: mental, physical, and family functioning. AIDS Care. 2002;14(5):633–44.CrossRefPubMed Murphy DA, Marelich WD, Dello Stritto ME, Swendeman D, Witkin A. Mothers living with HIV/AIDS: mental, physical, and family functioning. AIDS Care. 2002;14(5):633–44.CrossRefPubMed
8.
go back to reference Armistead L, Klein K, Forehand R, Wierson M. Disclosure of parental HIV infection to children in the families of men with hemophilia: description, outcomes, and the role of family processes. J Fam Psychol. 1997;11(1):49–61.CrossRef Armistead L, Klein K, Forehand R, Wierson M. Disclosure of parental HIV infection to children in the families of men with hemophilia: description, outcomes, and the role of family processes. J Fam Psychol. 1997;11(1):49–61.CrossRef
9.
go back to reference Murphy DA, Steers WN, Dello Stritto ME. Maternal disclosure of mothers’ HIV serostatus to their young children. J Fam Psychol. 2001;15(3):441–50.CrossRefPubMed Murphy DA, Steers WN, Dello Stritto ME. Maternal disclosure of mothers’ HIV serostatus to their young children. J Fam Psychol. 2001;15(3):441–50.CrossRefPubMed
10.
go back to reference Forsyth BW, Damour L, Nagler S, Adnopoz J. The psychological effects of parental human immunodeficiency virus infection on uninfected children. Arch Pediatr Adolesc Med. 1996;150(10):1015–20.PubMed Forsyth BW, Damour L, Nagler S, Adnopoz J. The psychological effects of parental human immunodeficiency virus infection on uninfected children. Arch Pediatr Adolesc Med. 1996;150(10):1015–20.PubMed
11.
go back to reference Jones DJ, Foster SE, Zalot AA, Chester C, King A. Knowledge of maternal HIV/AIDS and child adjustment: the moderating role of children’s relationships with their mothers. AIDS Behav. 2007;11(3):409–20.CrossRefPubMed Jones DJ, Foster SE, Zalot AA, Chester C, King A. Knowledge of maternal HIV/AIDS and child adjustment: the moderating role of children’s relationships with their mothers. AIDS Behav. 2007;11(3):409–20.CrossRefPubMed
12.
go back to reference Rotheram-Borus MJ, Weiss R, Alber S, Lester P. Adolescent adjustment before and after HIV-related parental death. J Consult Clin Psychol. 2005;73(2):221–8.CrossRefPubMed Rotheram-Borus MJ, Weiss R, Alber S, Lester P. Adolescent adjustment before and after HIV-related parental death. J Consult Clin Psychol. 2005;73(2):221–8.CrossRefPubMed
13.
go back to reference Omarzu J. A disclosure decision model: determining how and when individuals will self-disclose. Pers Soc Psychol Rev. 2000;4(2):174–85.CrossRef Omarzu J. A disclosure decision model: determining how and when individuals will self-disclose. Pers Soc Psychol Rev. 2000;4(2):174–85.CrossRef
14.
go back to reference Devers KJ. How will we know “Good” Qualitative research when we see it? Beginning the dialogue in health services research. Health Serv Res. 1999;34(5 (Part 2)):1153–88.PubMed Devers KJ. How will we know “Good” Qualitative research when we see it? Beginning the dialogue in health services research. Health Serv Res. 1999;34(5 (Part 2)):1153–88.PubMed
15.
go back to reference Irwin LG, Johnson J. Interviewing young children: explicating our practices and dilemmas. Qual Health Res. 2005;15(6):821–31.CrossRefPubMed Irwin LG, Johnson J. Interviewing young children: explicating our practices and dilemmas. Qual Health Res. 2005;15(6):821–31.CrossRefPubMed
16.
go back to reference Hackl KL, Somlai AM, Kelly JA, Kalichman SC. Women living with HIV/AIDS: the dual challenge of being a patient and caregiver. Health Soc Work. 1997;22(1):53–62.PubMed Hackl KL, Somlai AM, Kelly JA, Kalichman SC. Women living with HIV/AIDS: the dual challenge of being a patient and caregiver. Health Soc Work. 1997;22(1):53–62.PubMed
17.
go back to reference Ingram D, Hutchinson SA. Double binds and the reproductive and mothering experiences of HIV-positive women. Qual Health Res. 2000;10(1):117–32.CrossRefPubMed Ingram D, Hutchinson SA. Double binds and the reproductive and mothering experiences of HIV-positive women. Qual Health Res. 2000;10(1):117–32.CrossRefPubMed
18.
go back to reference Semple SJ, Patterson TL, Temoshok LR, McCutchan JA, Straits-Troster KA, Chandler JL, et al. Identification of psychobiological stressors among HIV-positive women. HIV neurobehavioral research center (HNRC) group. Women Health. 1993;20(4):15–36.CrossRefPubMed Semple SJ, Patterson TL, Temoshok LR, McCutchan JA, Straits-Troster KA, Chandler JL, et al. Identification of psychobiological stressors among HIV-positive women. HIV neurobehavioral research center (HNRC) group. Women Health. 1993;20(4):15–36.CrossRefPubMed
19.
go back to reference Murphy DA, Roberts KJ, Hoffman D. Young children’s reactions to mothers’ disclosure of maternal HIV+ serostatus. J Child Fam Stud. 2006;15(1):39–56.CrossRef Murphy DA, Roberts KJ, Hoffman D. Young children’s reactions to mothers’ disclosure of maternal HIV+ serostatus. J Child Fam Stud. 2006;15(1):39–56.CrossRef
20.
go back to reference DeMatteo D, Wells LM, Goldie RS, King SM. The ‘family’ context of HIV: a need for comprehensive health and social policies. AIDS Care. 2002;14(2):261–78.CrossRefPubMed DeMatteo D, Wells LM, Goldie RS, King SM. The ‘family’ context of HIV: a need for comprehensive health and social policies. AIDS Care. 2002;14(2):261–78.CrossRefPubMed
21.
go back to reference Faithfull J. HIV-positive and AIDS-infected women: challenges and difficulties of mothering. Am J Orthopsychiatry. 1997;67(1):144–51.CrossRefPubMed Faithfull J. HIV-positive and AIDS-infected women: challenges and difficulties of mothering. Am J Orthopsychiatry. 1997;67(1):144–51.CrossRefPubMed
22.
go back to reference Schuster MA, Kanouse DE, Morton SC, Bozzette SA, Miu A, Scott GB, et al. HIV-infected parents and their children in the United States. Am J Public Health. 2000;90(7):1074–81.CrossRefPubMed Schuster MA, Kanouse DE, Morton SC, Bozzette SA, Miu A, Scott GB, et al. HIV-infected parents and their children in the United States. Am J Public Health. 2000;90(7):1074–81.CrossRefPubMed
23.
go back to reference Chen JL, Philips KA, Kanouse DE, Collins RL, Miu A. Fertility desires and intentions of HIV-positive men and women. Fam Plann Perspect. 2001;33(4):144–52.CrossRefPubMed Chen JL, Philips KA, Kanouse DE, Collins RL, Miu A. Fertility desires and intentions of HIV-positive men and women. Fam Plann Perspect. 2001;33(4):144–52.CrossRefPubMed
24.
go back to reference Cowgill BO, Bogart LM, Corona R, Ryan G, Schuster MA. Fears about HIV transmission in families with an HIV-infected parent: a qualitative analysis. Pediatrics. 2008;122(5):E950–8.CrossRefPubMed Cowgill BO, Bogart LM, Corona R, Ryan G, Schuster MA. Fears about HIV transmission in families with an HIV-infected parent: a qualitative analysis. Pediatrics. 2008;122(5):E950–8.CrossRefPubMed
25.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
26.
go back to reference MacQueen KM, McLellan E, Kay K, Milstein B. Codebook development for team-based qualitative analysis. CAM J. 1998;10:31–6. MacQueen KM, McLellan E, Kay K, Milstein B. Codebook development for team-based qualitative analysis. CAM J. 1998;10:31–6.
27.
go back to reference Bernard HR. Research methods in anthropology: qualitative and quantitative approaches. 3rd ed. Thousand Oaks, CA: SAGE Publications; 2002. Bernard HR. Research methods in anthropology: qualitative and quantitative approaches. 3rd ed. Thousand Oaks, CA: SAGE Publications; 2002.
28.
go back to reference Lincoln Y, Guba E. Naturalistic inquiry. Newbury Park, CA: Sage Publication; 1985. Lincoln Y, Guba E. Naturalistic inquiry. Newbury Park, CA: Sage Publication; 1985.
29.
go back to reference Ryan G, Bernard H. Techniques to identify themes. Field Methods. 2003;15:85–109.CrossRef Ryan G, Bernard H. Techniques to identify themes. Field Methods. 2003;15:85–109.CrossRef
30.
go back to reference Miles M, Huberman A. Qualitative data analysis: an expanded sourcebook. Thousand Oaks, CA: Sage Publications; 1994. Miles M, Huberman A. Qualitative data analysis: an expanded sourcebook. Thousand Oaks, CA: Sage Publications; 1994.
31.
go back to reference Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics. 1977;33(1):159–74.CrossRefPubMed Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics. 1977;33(1):159–74.CrossRefPubMed
32.
go back to reference American Academy Of Pediatrics. Disclosure of illness status to children and adolescents with HIV infection. Pediatrics. 1999;103(1):164–6.CrossRef American Academy Of Pediatrics. Disclosure of illness status to children and adolescents with HIV infection. Pediatrics. 1999;103(1):164–6.CrossRef
33.
go back to reference Reyland SA, Higgins-D’Alessandro A, McMahon TJ. Tell them you love them because you never know when things could change: voices of adolescents living with HIV-positive mothers. AIDS Care. 2002;14(2):285–94.CrossRefPubMed Reyland SA, Higgins-D’Alessandro A, McMahon TJ. Tell them you love them because you never know when things could change: voices of adolescents living with HIV-positive mothers. AIDS Care. 2002;14(2):285–94.CrossRefPubMed
34.
go back to reference Okuno S, Rotheram-Borus MJ, McCutchan E, Newell C, Stein MT. Carlos: a 12-year-old boy discovers his mother is HIV positive. J Dev Behav Pediatr. 2006;27(1):51–4.CrossRefPubMed Okuno S, Rotheram-Borus MJ, McCutchan E, Newell C, Stein MT. Carlos: a 12-year-old boy discovers his mother is HIV positive. J Dev Behav Pediatr. 2006;27(1):51–4.CrossRefPubMed
35.
go back to reference Champion JE, Jaser SS, Reeslund KL, Simmons L, Potts JE, Shears AR, et al. Caretaking behaviors by adolescent children of mothers with and without a history of depression. J Fam Psychol. 2009;23(2):156–66.CrossRefPubMed Champion JE, Jaser SS, Reeslund KL, Simmons L, Potts JE, Shears AR, et al. Caretaking behaviors by adolescent children of mothers with and without a history of depression. J Fam Psychol. 2009;23(2):156–66.CrossRefPubMed
36.
go back to reference Tompkins TL. Parentification and maternal HIV infection: beneficial role or pathological burden? J Child Fam Stud. 2007;16(1):113–23.CrossRef Tompkins TL. Parentification and maternal HIV infection: beneficial role or pathological burden? J Child Fam Stud. 2007;16(1):113–23.CrossRef
37.
go back to reference Rotheram-Borus MJ, Lee MB, Gwadz M, Draimin B. An intervention for parents with AIDS and their adolescent children. Am J Public Health. 2001;91(8):1294–302.CrossRefPubMed Rotheram-Borus MJ, Lee MB, Gwadz M, Draimin B. An intervention for parents with AIDS and their adolescent children. Am J Public Health. 2001;91(8):1294–302.CrossRefPubMed
Metadata
Title
Parents’ Disclosure of Their HIV Infection to Their Children in the Context of the Family
Authors
David P. Kennedy
Burton O. Cowgill
Laura M. Bogart
Rosalie Corona
Gery W. Ryan
Debra A. Murphy
Theresa Nguyen
Mark A. Schuster
Publication date
01-10-2010
Publisher
Springer US
Published in
AIDS and Behavior / Issue 5/2010
Print ISSN: 1090-7165
Electronic ISSN: 1573-3254
DOI
https://doi.org/10.1007/s10461-010-9715-y

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