HIV-positive parents, HIV-positive children, and HIV-negative children’s perspectives on disclosure of a parent’s and child’s illness in Kenya

Hiv Disclosure ◽

Hiv Positive ◽

Full Disclosure ◽

Children’S Perspectives ◽

National School ◽

To Receive ◽

Depth Interviews ◽

HIV disclosure from parent to child is complex and challenging to HIV-positive parents and healthcare professionals. The purpose of the study was to understand the lived experiences of HIV-positive parents and their children during the disclosure process in Kenya. Sixteen HIV-positive parents, seven HIV-positive children, and five HIV-negative children completed semistructured, in-depth interviews. Data were analyzed using the Van Kaam method; NVivo 8 software was used to assist data analysis. We present data on the process of disclosure based on how participants recommended full disclosure be approached to HIV-positive and negative children. Participants recommended disclosure as a process starting at fiveyears with full disclosure delivered at 10 years when the child was capable of understanding the illness, or by 14 years when the child was mature enough to receive the news if full disclosure had not been conducted earlier. Important considerations at the time of full disclosure included the parent’s and/or child’s health statuses, number of infected family members’ illnesses to be disclosed to the child, child’s maturity and understanding level, and the person best suited to deliver full disclosure to the child. The results also revealed it was important to address important life events such as taking a national school examination during disclosure planning and delivery. Recommendations are made for inclusion into HIV disclosure guidelines, manuals, and programs in resource-poor nations with high HIV prevalence.

HIV-positive parents, HIV-positive children, and HIV-negative children’s perspectives on disclosure of a parent’s and child’s illness in Kenya

10.7287/peerj.preprints.303 ◽

2014 ◽

Author(s):

Grace Gachanja ◽

Gary J Burkholder ◽

Aimee Ferraro

Keyword(s):

Lived Experiences ◽

Hiv Disclosure ◽

Hiv Positive ◽

Full Disclosure ◽

Children’S Perspectives ◽

National School ◽

To Receive ◽

Depth Interviews ◽

HIV disclosure from parent to child is complex and challenging to HIV-positive parents and healthcare professionals. The purpose of the study was to understand the lived experiences of HIV-positive parents and their children during the disclosure process in Kenya. Sixteen HIV-positive parents, seven HIV-positive children, and five HIV-negative children completed semistructured, in-depth interviews. Data were analyzed using the Van Kaam method; NVivo 8 software was used to assist data analysis. We present data on the process of disclosure based on how participants recommended full disclosure be approached to HIV-positive and negative children. Participants recommended disclosure as a process starting at fiveyears with full disclosure delivered at 10 years when the child was capable of understanding the illness, or by 14 years when the child was mature enough to receive the news if full disclosure had not been conducted earlier. Important considerations at the time of full disclosure included the parent’s and/or child’s health statuses, number of infected family members’ illnesses to be disclosed to the child, child’s maturity and understanding level, and the person best suited to deliver full disclosure to the child. The results also revealed it was important to address important life events such as taking a national school examination during disclosure planning and delivery. Recommendations are made for inclusion into HIV disclosure guidelines, manuals, and programs in resource-poor nations with high HIV prevalence.

HIV-positive parents’ accounts on disclosure preparation activities for a parent’s and/or a child’s illness in Kenya

10.7287/peerj.preprints.577v1 ◽

2014 ◽

Author(s):

Grace Gachanja ◽

Gary J Burkholder ◽

Aimee Ferraro

Keyword(s):

Hiv Disclosure ◽

Sub Saharan Africa ◽

Hiv Positive ◽

Original Research ◽

Original Research Article ◽

Full Disclosure ◽

Research Article ◽

Sub Saharan ◽

Key Aspects ◽

To Receive

The aim of this research brief is to describe a study that examined how HIV-positive parents prepared themselves and their children for HIV disclosure in Kenya. This is the first study from Sub-Saharan Africa (SSA) that provides comprehensive data on how HIV-positive parents prepare themselves and their HIV-positive and negative children for disclosure of a parent’s and/or a child’s illness. Prior studies in SSA have provided limited details about the activities performed by parents to prepare for disclosure of a parent’s or a child’s illness. Key aspects of preparing for disclosure to children: 1. Most parents take years to prepare for disclosure, proceeding when they judge themselves ready to impart the news and their children receptive to receive the news. 2. Parents’ preparation activities for disclosure proceed through four major phases which include secrecy, exploration, readiness, and finally full disclosure of illness. 3. In the secrecy phase parents do not disclose; in the exploration phase they plan how they will disclose; in the readiness phase they seek activities that will help them to fully disclose; finally when ready they fully disclose to their children based on birth order. 4. Parents who have many children remain simultaneously within the different preparation phases as they move their children from a state where none are disclosed to, to a state when all of them have been fully disclosed to. The original research article is located at: http://scholarworks.waldenu.edu/jsbhs/vol8/iss1/1/

HIV-positive parents’ accounts on disclosure preparation activities for a parent’s and/or a child’s illness in Kenya

10.7287/peerj.preprints.577 ◽

2014 ◽

Author(s):

Grace Gachanja ◽

Gary J Burkholder ◽

Aimee Ferraro

Keyword(s):

Hiv Disclosure ◽

Sub Saharan Africa ◽

Hiv Positive ◽

Original Research ◽

Original Research Article ◽

Full Disclosure ◽

Research Article ◽

Sub Saharan ◽

Key Aspects ◽

To Receive

The aim of this research brief is to describe a study that examined how HIV-positive parents prepared themselves and their children for HIV disclosure in Kenya. This is the first study from Sub-Saharan Africa (SSA) that provides comprehensive data on how HIV-positive parents prepare themselves and their HIV-positive and negative children for disclosure of a parent’s and/or a child’s illness. Prior studies in SSA have provided limited details about the activities performed by parents to prepare for disclosure of a parent’s or a child’s illness. Key aspects of preparing for disclosure to children: 1. Most parents take years to prepare for disclosure, proceeding when they judge themselves ready to impart the news and their children receptive to receive the news. 2. Parents’ preparation activities for disclosure proceed through four major phases which include secrecy, exploration, readiness, and finally full disclosure of illness. 3. In the secrecy phase parents do not disclose; in the exploration phase they plan how they will disclose; in the readiness phase they seek activities that will help them to fully disclose; finally when ready they fully disclose to their children based on birth order. 4. Parents who have many children remain simultaneously within the different preparation phases as they move their children from a state where none are disclosed to, to a state when all of them have been fully disclosed to. The original research article is located at: http://scholarworks.waldenu.edu/jsbhs/vol8/iss1/1/

Parents' phases and children's stages of HIV disclosure

10.7287/peerj.preprints.1727v1 ◽

2016 ◽

Author(s):

Grace Gachanja ◽

Gary J Burkholder ◽

Aimee Ferraro

Keyword(s):

Phenomenological Study ◽

Hiv Disclosure ◽

Hiv Positive ◽

Structured Interviews ◽

Full Disclosure ◽

Unknown Status ◽

Living Children ◽

Qualitative Phenomenological ◽

Qualitative Phenomenological Study ◽

Background: HIV-positive parents are challenged with disclosure to their children. Some do not disclose at all, others disclose to some children, and many take years to fully disclose to all their children. Methods: This qualitative phenomenological study was conducted in Kenya to describe the lived experiences of HIV-positive parents and their children during the disclosure process. Sixteen HIV-positive parents were engaged in in-depth, semi-structured interviews. Interview data were analyzed using the modified Van Kaam method. Results: Parents had a total of 37 living children; 15 HIV-positive, 11 HIV-negative, and 11 of unknown HIV status. Parents went through four phases (secrecy, exploratory, readiness, full disclosure) of disclosure; most admitted needing healthcare professionals’ help to move their children through the three child stages (no, partial, full) of disclosure . Most parents were in between the exploratory and full disclosure phases but had taken years to navigate these phases. Twelve children (HIV-negative and unknown status) had full disclosure of their parents’ illnesses, nine HIV-positive children had full disclosure of their own and their parents’ illnesses, and 10 children (five HIV-positive, four unknown status, and one HIV-negative) had partial disclosure of their own and/or their parents’ illnesses. Parents had indefinite plans to disclose to the six children with no disclosure. Conclusion: Despite being challenged with disclosure, parents progressively navigated the disclosure phases and fully disclosed to the majority of their children. However, the creation of HIV disclosure guidelines, services, and programs would help hasten the time it takes for them to fully disclose to all their children.

Parents' phases and children's stages of HIV disclosure

10.7287/peerj.preprints.1727 ◽

2016 ◽

Author(s):

Grace Gachanja ◽

Gary J Burkholder ◽

Aimee Ferraro

Keyword(s):

Phenomenological Study ◽

Hiv Disclosure ◽

Hiv Positive ◽

Structured Interviews ◽

Full Disclosure ◽

Unknown Status ◽

Living Children ◽

Qualitative Phenomenological ◽

Qualitative Phenomenological Study ◽

Background: HIV-positive parents are challenged with disclosure to their children. Some do not disclose at all, others disclose to some children, and many take years to fully disclose to all their children. Methods: This qualitative phenomenological study was conducted in Kenya to describe the lived experiences of HIV-positive parents and their children during the disclosure process. Sixteen HIV-positive parents were engaged in in-depth, semi-structured interviews. Interview data were analyzed using the modified Van Kaam method. Results: Parents had a total of 37 living children; 15 HIV-positive, 11 HIV-negative, and 11 of unknown HIV status. Parents went through four phases (secrecy, exploratory, readiness, full disclosure) of disclosure; most admitted needing healthcare professionals’ help to move their children through the three child stages (no, partial, full) of disclosure . Most parents were in between the exploratory and full disclosure phases but had taken years to navigate these phases. Twelve children (HIV-negative and unknown status) had full disclosure of their parents’ illnesses, nine HIV-positive children had full disclosure of their own and their parents’ illnesses, and 10 children (five HIV-positive, four unknown status, and one HIV-negative) had partial disclosure of their own and/or their parents’ illnesses. Parents had indefinite plans to disclose to the six children with no disclosure. Conclusion: Despite being challenged with disclosure, parents progressively navigated the disclosure phases and fully disclosed to the majority of their children. However, the creation of HIV disclosure guidelines, services, and programs would help hasten the time it takes for them to fully disclose to all their children.

A Couple’s Marital Disharmony and its Psychological Effects on their Children during the HIV Disclosure Process in Kenya

Health Culture and Society ◽

10.5195/hcs.2015.166 ◽

2015 ◽

Vol 8 (1) ◽

pp. 34-47 ◽

Cited By ~ 1

Author(s):

G. Gachanja

Keyword(s):

Hiv Testing ◽

Lived Experiences ◽

Hiv Disclosure ◽

Psychological Effects ◽

Hiv Positive ◽

Published Data ◽

Structured Interviews ◽

Full Disclosure ◽

The Family

Limited published data exists on how HIV-positive parents perform disclosure to all their children. A couple’s HIV disclosure experience to all their children is presented. They participated in a larger study conducted to understand the lived experiences of HIV-positive parents and their children during the disclosure process. Each underwent individualized in-depth semi-structured interviews. Interviews were transcribed and transferred into NVivo 8 for analysis using the Van Kaam method. Three themes emerged including HIV testing, full disclosure delivery accompanied by marital disharmony, and post-disclosure psychological effects on the family. Marital disharmony and non-involvement of the father caused the mother to fully disclose their illnesses to their four oldest children. All children were affected by disclosure, one had a delayed emotional outburst, and another was still angry and withdrawn years later. HIV-positive parents with poor relationships within the families need intense counseling and support pre, during, and post-disclosure to improve outcomes.

A model for HIV disclosure of a parent’s and/or a child’s illness

PeerJ ◽

10.7717/peerj.1662 ◽

2016 ◽

Vol 4 ◽

pp. e1662 ◽

Cited By ~ 10

Author(s):

Grace Gachanja ◽

Gary J. Burkholder

Keyword(s):

Phenomenological Study ◽

Unprotected Sex ◽

Hiv Disclosure ◽

Clinical Officer ◽

Hiv Positive ◽

Semistructured Interview ◽

Hiv Status ◽

Parents And Children ◽

HIV prevalence in Kenya remains steady at 5.6% for adults 15 years and older, and 0.9% among children aged below 14 years. Parents and children are known to practice unprotected sex, which has implications for continued HIV spread within the country. Additionally, due to increased accessibility of antiretroviral therapy, more HIV-positive persons are living longer. Therefore, the need for HIV disclosure of a parent’s and/or a child’s HIV status within the country will continue for years to come. We conducted a qualitative phenomenological study to understand the entire process of disclosure from the time of initial HIV diagnosis of an index person within an HIV-affected family, to the time of full disclosure of a parent’s and/or a child’s HIV status to one or more HIV-positive, negative, or untested children within these households. Participants were purposively selected and included 16 HIV-positive parents, seven HIV-positive children, six healthcare professionals (physician, clinical officer, psychologist, registered nurse, social worker, and a peer educator), and five HIV-negative children. All participants underwent an in-depth individualized semistructured interview that was digitally recorded. Interviews were transcribed and analyzed in NVivo 8 using the modified Van Kaam method. Six themes emerged from the data indicating that factors such as HIV testing, living with HIV, evolution of disclosure, questions, emotions, benefits, and consequences of disclosure interact with each other and either impede or facilitate the HIV disclosure process. Kenya currently does not have guidelines for HIV disclosure of a parent’s and/or a child’s HIV status. HIV disclosure is a process that may result in poor outcomes in both parents and children. Therefore, understanding how these factors affect the disclosure process is key to achieving optimal disclosure outcomes in both parents and children. To this end, we propose an HIV disclosure model incorporating these six themes that is geared at helping healthcare professionals provide routine, clinic-based, targeted, disclosure-related counseling/advice and services to HIV-positive parents and their HIV-positive, HIV-negative, and untested children during the HIV disclosure process. The model should help improve HIV disclosure levels within HIV-affected households. Future researchers should test the utility and viability of our HIV disclosure model in different settings and cultures.

Peer Review #2 of "HIV-positive parents, HIV-positive children, and HIV-negative children’s perspectives on disclosure of a parent’s and child’s illness in Kenya (v0.1)"

10.7287/peerj.486v0.1/reviews/2 ◽

2014 ◽

Keyword(s):

Peer Review ◽

Hiv Positive ◽

Children’S Perspectives ◽

Parents' and children's emotions spanning the HIV disclosure process in Kenya

10.7287/peerj.preprints.946 ◽

2015 ◽

Author(s):

Grace Gachanja ◽

Gary J Burkholder ◽

Aimee Ferraro

Keyword(s):

Support Groups ◽

Qualitative Data ◽

Hiv Disclosure ◽

Hiv Positive ◽

Stress Exposure ◽

Parents And Children ◽

Semistructured Interviews ◽

Positive Feelings ◽

Disclosure Practice

Background: HIV disclosure from parent to child is challenging. While disclosure is expected to be emotional for parents and children, the total disclosure experience has not been described. The purpose of this study was to understand the lived experiences of HIV-positive parents and their children in Kenya during the disclosure process. Methods: Phenomenological qualitative data were collected using in-depth semistructured interviews. Thirty four participants consisting of HIV-positive parents, children (infected and uninfected), and healthcare professionals (HCPs) were enrolled. Data analysis was performed using NVivo 8 and the Van Kaam method. Results: Pre-disclosure, parents were plagued with fear/worry of stigma, judgment, rejection, blame; and the reaction/consequences of disclosure on their children. Guilt and shame for bringing the illness into the home abounded. Children sensed, wondered, and worried about secrets within their homes. During disclosure, parents experienced catharsis, guilt, confusion, and panic when children reacted negatively. Children experienced shock, disbelief, anger, sadness, worry, depression, confusion, and catharsis from finally knowing what was wrong. Post-disclosure parents alternated between relief, guilt, and depression as their children’s behavior changed due to disclosure. Children experienced unhappiness, depression, hopelessness, self-hate, and withdrawal. Recovery time varied lasting from a few hours to four months later; some children ultimately felt relief and self-acceptance. However, stress exposure caused disclosure emotions to reappear. Conclusion: HIV disclosure process is accompanied by alternating negative and positive feelings for both parents and children. To ease the process, HCPs should provide support services such as disclosure practice sessions/training, counseling, peer support groups, and stress management.