Comparing fears about paediatric HIV disclosure to the lived experiences of parents and guardians: a prospective cohort study
We aimed to: (1) follow parents and guardians through the process of paediatric HIV disclosure to understand how often pre-disclosure worries are realised; and (2) estimate the effects of disclosure on child, caregiver, and family well-being. We conducted a 12-month prospective cohort study in Zimba...
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| Published in: | Psychology & health Vol. 38; no. 12; pp. 1587 - 1605 |
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| Main Authors: | , , , , , , , , |
| Format: | Journal Article |
| Language: | English |
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02-12-2023
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| Abstract | We aimed to: (1) follow parents and guardians through the process of paediatric HIV disclosure to understand how often pre-disclosure worries are realised; and (2) estimate the effects of disclosure on child, caregiver, and family well-being.
We conducted a 12-month prospective cohort study in Zimbabwe with 123 primary caregivers of children ages 9 to 15 years who were HIV positive but did not know their serostatus at baseline. By the end of the study period 65 caregivers reported that their child learned his or her HIV-positive status.
We used three waves of data to compare caregivers' pre-disclosure worries to post-disclosure reports and to characterise associations between disclosure and well-being of the child (Strengths and Difficulties Questionnaire), caregiver (Patient Health Questionnaire-9), and family (Family Relationship Quality) over time.
Caregivers' pre-disclosure worries and fears about how their child would react to disclosure of their HIV status largely went unrealised. Furthermore, we did not find strong evidence of clinically-important increases in problems on average following disclosure.
Findings support the call to identify supportive intervention strategies that address caregiver fears at the beginning of the disclosure process. |
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| AbstractList | We aimed to: (1) follow parents and guardians through the process of paediatric HIV disclosure to understand how often pre-disclosure worries are realised; and (2) estimate the effects of disclosure on child, caregiver, and family well-being.
We conducted a 12-month prospective cohort study in Zimbabwe with 123 primary caregivers of children ages 9 to 15 years who were HIV positive but did not know their serostatus at baseline. By the end of the study period 65 caregivers reported that their child learned his or her HIV-positive status.
We used three waves of data to compare caregivers' pre-disclosure worries to post-disclosure reports and to characterise associations between disclosure and well-being of the child (Strengths and Difficulties Questionnaire), caregiver (Patient Health Questionnaire-9), and family (Family Relationship Quality) over time.
Caregivers' pre-disclosure worries and fears about how their child would react to disclosure of their HIV status largely went unrealised. Furthermore, we did not find strong evidence of clinically-important increases in problems on average following disclosure.
Findings support the call to identify supportive intervention strategies that address caregiver fears at the beginning of the disclosure process. ObjectiveWe aimed to: (1) follow parents and guardians through the process of paediatric HIV disclosure to understand how often pre-disclosure worries are realised; and (2) estimate the effects of disclosure on child, caregiver, and family well-being.DesignWe conducted a 12-month prospective cohort study in Zimbabwe with 123 primary caregivers of children ages 9 to 15 years who were HIV positive but did not know their serostatus at baseline. By the end of the study period 65 caregivers reported that their child learned his or her HIV-positive status.Main Outcome MeasuresWe used three waves of data to compare caregivers’ pre-disclosure worries to post-disclosure reports and to characterise associations between disclosure and well-being of the child (Strengths and Difficulties Questionnaire), caregiver (Patient Health Questionnaire-9), and family (Family Relationship Quality) over time.ResultsCaregivers’ pre-disclosure worries and fears about how their child would react to disclosure of their HIV status largely went unrealised. Furthermore, we did not find strong evidence of clinically-important increases in problems on average following disclosure.ConclusionFindings support the call to identify supportive intervention strategies that address caregiver fears at the beginning of the disclosure process. We aimed to: (1) follow parents and guardians through the process of paediatric HIV disclosure to understand how often pre-disclosure worries are realised; and (2) estimate the effects of disclosure on child, caregiver, and family well-being.OBJECTIVEWe aimed to: (1) follow parents and guardians through the process of paediatric HIV disclosure to understand how often pre-disclosure worries are realised; and (2) estimate the effects of disclosure on child, caregiver, and family well-being.We conducted a 12-month prospective cohort study in Zimbabwe with 123 primary caregivers of children ages 9 to 15 years who were HIV positive but did not know their serostatus at baseline. By the end of the study period 65 caregivers reported that their child learned his or her HIV-positive status.DESIGNWe conducted a 12-month prospective cohort study in Zimbabwe with 123 primary caregivers of children ages 9 to 15 years who were HIV positive but did not know their serostatus at baseline. By the end of the study period 65 caregivers reported that their child learned his or her HIV-positive status.We used three waves of data to compare caregivers' pre-disclosure worries to post-disclosure reports and to characterise associations between disclosure and well-being of the child (Strengths and Difficulties Questionnaire), caregiver (Patient Health Questionnaire-9), and family (Family Relationship Quality) over time.MAIN OUTCOME MEASURESWe used three waves of data to compare caregivers' pre-disclosure worries to post-disclosure reports and to characterise associations between disclosure and well-being of the child (Strengths and Difficulties Questionnaire), caregiver (Patient Health Questionnaire-9), and family (Family Relationship Quality) over time.Caregivers' pre-disclosure worries and fears about how their child would react to disclosure of their HIV status largely went unrealised. Furthermore, we did not find strong evidence of clinically-important increases in problems on average following disclosure.RESULTSCaregivers' pre-disclosure worries and fears about how their child would react to disclosure of their HIV status largely went unrealised. Furthermore, we did not find strong evidence of clinically-important increases in problems on average following disclosure.Findings support the call to identify supportive intervention strategies that address caregiver fears at the beginning of the disclosure process.CONCLUSIONFindings support the call to identify supportive intervention strategies that address caregiver fears at the beginning of the disclosure process. |
| Author | Simmons, Ryan Rusakaniko, Simbarashe Langhaug, Lisa Mahaso, Simbarashe Puffer, Eve S. Schenk, Katie Finnegan, Amy Choi, Yujung Green, Eric P. |
| AuthorAffiliation | d George Mason University, Washington, DC, USA f Batanai HIV & AIDS Service Organization; Masvingo, Zimbabwe c Regional Psychosocial Support Initiative, Harare, Zimbabwe b Duke University, Duke Global Health Institute, Durham, NC, USA e University of Zimbabwe, Harare, Zimbabwe a Duke University, Department of Psychology and Neuroscience, Durham, NC, USA |
| AuthorAffiliation_xml | – name: f Batanai HIV & AIDS Service Organization; Masvingo, Zimbabwe – name: e University of Zimbabwe, Harare, Zimbabwe – name: a Duke University, Department of Psychology and Neuroscience, Durham, NC, USA – name: b Duke University, Duke Global Health Institute, Durham, NC, USA – name: c Regional Psychosocial Support Initiative, Harare, Zimbabwe – name: d George Mason University, Washington, DC, USA |
| Author_xml | – sequence: 1 givenname: Eve S. orcidid: 0000-0003-2281-821X surname: Puffer fullname: Puffer, Eve S. organization: Duke Global Health Institute, Duke University – sequence: 2 givenname: Amy orcidid: 0000-0003-4940-6581 surname: Finnegan fullname: Finnegan, Amy organization: Duke Global Health Institute, Duke University – sequence: 3 givenname: Katie orcidid: 0000-0003-4349-0049 surname: Schenk fullname: Schenk, Katie organization: Department of Global and Community Health, George Mason University – sequence: 4 givenname: Lisa orcidid: 0000-0002-9131-8158 surname: Langhaug fullname: Langhaug, Lisa organization: Regional Psychosocial Support Initiative – sequence: 5 givenname: Simbarashe orcidid: 0000-0002-3159-0205 surname: Rusakaniko fullname: Rusakaniko, Simbarashe – sequence: 6 givenname: Yujung orcidid: 0000-0002-3213-8093 surname: Choi fullname: Choi, Yujung organization: Duke Global Health Institute, Duke University – sequence: 7 givenname: Simbarashe surname: Mahaso fullname: Mahaso, Simbarashe organization: Batanai HIV & AIDS Service Organization – sequence: 8 givenname: Ryan orcidid: 0000-0003-0855-4334 surname: Simmons fullname: Simmons, Ryan organization: Duke Global Health Institute, Duke University – sequence: 9 givenname: Eric P. orcidid: 0000-0003-2188-2244 surname: Green fullname: Green, Eric P. organization: Duke Global Health Institute, Duke University |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/35188010$$D View this record in MEDLINE/PubMed |
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| Notes | ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23 Katie Schenk is now affiliated with the School of International Service at American University. Lisa Langhaug is now affiliated with the Zvitambo Institute for Maternal and Child Research. |
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| References | e_1_3_3_30_1 Kruschke J. (e_1_3_3_25_1) 2014 e_1_3_3_18_1 e_1_3_3_17_1 e_1_3_3_39_1 e_1_3_3_19_1 e_1_3_3_14_1 e_1_3_3_37_1 e_1_3_3_13_1 e_1_3_3_38_1 e_1_3_3_16_1 e_1_3_3_35_1 e_1_3_3_15_1 e_1_3_3_36_1 e_1_3_3_10_1 e_1_3_3_33_1 e_1_3_3_34_1 e_1_3_3_12_1 e_1_3_3_11_1 e_1_3_3_32_1 Moodley K. (e_1_3_3_31_1) 2006; 96 e_1_3_3_7_1 e_1_3_3_6_1 e_1_3_3_9_1 e_1_3_3_8_1 e_1_3_3_29_1 e_1_3_3_28_1 e_1_3_3_24_1 e_1_3_3_27_1 e_1_3_3_26_1 e_1_3_3_3_1 e_1_3_3_21_1 e_1_3_3_2_1 e_1_3_3_20_1 e_1_3_3_5_1 e_1_3_3_23_1 e_1_3_3_4_1 e_1_3_3_22_1 |
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| Snippet | We aimed to: (1) follow parents and guardians through the process of paediatric HIV disclosure to understand how often pre-disclosure worries are realised; and... ObjectiveWe aimed to: (1) follow parents and guardians through the process of paediatric HIV disclosure to understand how often pre-disclosure worries are... |
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| SubjectTerms | adolescent Africa Caregivers Cohort analysis disclosure HIV Human immunodeficiency virus mental health parents Pediatrics Questionnaires |
| Title | Comparing fears about paediatric HIV disclosure to the lived experiences of parents and guardians: a prospective cohort study |
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