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

Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro

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/

2014 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro

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/


2014 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro

The aim of this research brief is to describe a study that examined the lived experiences of HIV-positive parents and their biological HIV-positive and negative children before, during, and after the HIV disclosure process in Kenya. This is the first study from Sub-Saharan Africa (SSA) that provides perspectives on HIV disclosure of a parent’s and a child’s illness from the viewpoints of HIV-positive parents, HIV-positive children, and HIV-negative children. Prior studies in SSA have mostly centered on disclosure to HIV-positive children (of their own illnesses) and others have reported on parents disclosing their illnesses to their children. Key Aspects of HIV Disclosure to Children: 1. Disclosure should be performed as a process. 2. It is a parent’s decision on when to disclose but also a child’s right to be told about his/her own, a parent’s, and other family member’s illnesses and deaths. 3. Healthcare professionals should help parents prepare for and disclose family member’s illnesses and prior deaths to their children. 4. Disclosure should preferably be performed when both the parent and child are in good health. 5. Disclosure should be performed when a child shows understanding of the illness and/or maturity. 6. Disclosure planning should include a determination of who is the most suitable person to disclose to a child. 7. Disclosure should be postponed until animportant life event (e.g., taking a national school examination) has occurred. The original research article is located at: https://peerj.com/articles/486.pdf


2014 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro

The aim of this research brief is to describe a study that examined the lived experiences of HIV-positive parents and their biological HIV-positive and negative children before, during, and after the HIV disclosure process in Kenya. This is the first study from Sub-Saharan Africa (SSA) that provides perspectives on HIV disclosure of a parent’s and a child’s illness from the viewpoints of HIV-positive parents, HIV-positive children, and HIV-negative children. Prior studies in SSA have mostly centered on disclosure to HIV-positive children (of their own illnesses) and others have reported on parents disclosing their illnesses to their children. Key Aspects of HIV Disclosure to Children: 1. Disclosure should be performed as a process. 2. It is a parent’s decision on when to disclose but also a child’s right to be told about his/her own, a parent’s, and other family member’s illnesses and deaths. 3. Healthcare professionals should help parents prepare for and disclose family member’s illnesses and prior deaths to their children. 4. Disclosure should preferably be performed when both the parent and child are in good health. 5. Disclosure should be performed when a child shows understanding of the illness and/or maturity. 6. Disclosure planning should include a determination of who is the most suitable person to disclose to a child. 7. Disclosure should be postponed until animportant life event (e.g., taking a national school examination) has occurred. The original research article is located at: https://peerj.com/articles/486.pdf


2019 ◽  
Vol 13 (3) ◽  
pp. 1-7
Author(s):  
Drusilla Makworo ◽  
Theresa Odero

Background The number of children living with HIV has increased worldwide, largely due to improvements in antiretroviral therapy. Most of these children are living in sub-Saharan Africa. The rate of disclosure to children of their HIV-positive status is low in low-resource countries compared to high-resource countries. Aim To explore health professionals' experiences of caring for HIV-positive children before and after their HIV-positive status was disclosed to them. The health professionals included nurses, counsellors, nutritionists, social workers, pharmacists and clinicians with at least 1 year of experience at the paediatric section of the comprehensive care centre. Methods Nine health professionals were interviewed. Findings Results revealed that there were more challenges before disclosure than after. The main challenge was communicating with the children. The children's main concerns before disclosures included the reason for treatment and its duration, and clinic follow-up. Conclusions Health professionals should be trained on the benefits of HIV disclosure to children, in order to allow for open and direct communication between healthcare providers, parents/carers and children.


2014 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro

Background. HIV disclosure is a challenging process for parents and healthcare professionals. The majority of HIV-infected persons live in Sub-Saharan Africa where HIV disclosure guidelines for a parent's and a child's illness are nonexistent. While there are two theoretical models of HIV disclosure, their utility in explaining disclosure in African cultures is largely unknown. 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. Thirty four participants consisting of 16 HIV-positive parents, 7 HIV-positive children, 5 HIV-negative children, and 6 healthcare professionals were engaged in in-depth, semistructured interviews. Interview data were analyzed using the modified Van Kaam method. Results. HIV disclosure is a complex process involving factors such as a parent's and child's state of health, ART consumption, stigma/discrimination, and sexuality concerns. Parents take years to prepare for and perform disclosure of theirs and/or their children's illnesses to their infected and noninfected children. They perform disclosure when they feel ready in stages, based on the birth order of their children, the perception of “the right time,” the child's understanding and maturity level, and whose illness(es) they intend to disclose at the time of disclosure. Conclusion. HIV disclosure is challenging and each disclosure session performed is planned and geared to the particular child receiving disclosure. Parents and healthcare professionals are challenged by disclosure and can benefit from creation of HIV disclosure guidelines accompanied by culturally sensitive manuals and training programs aimed at parents and healthcare professionals to ease the process of disclosure.


2015 ◽  
Author(s):  
Grace Gachanja

Some HIV affected families in Kenya have a combination of HIV-positive and negative children within the household. HIV-positive and negative children are known to experience variable effects following disclosure of their own and their parents’ illnesses respectively. Most studies conducted on the effects of disclosure on children have been with HIV-positive children and mother-child dyads. There has been limited involvement of HIV-negative children in HIV disclosure studies in Sub-Saharan Africa. A larger study was conducted to understand the lived experiences of HIV-positive parents and their children during the disclosure process in Kenya. Seven HIV-positive and five HIV-negative children participated in that study. In the current study, the experiences of these 12 children after receiving disclosure of their own and their parents’ illnesses respectively are presented. Each child underwent an in-depth qualitative semi-structured digitally recorded interview. The recorded interviews were transcribed and loaded into NVivo8 for phenomenological data analysis. Five themes emerged from the data showing that HIV-positive and negative children have varying post-disclosure experiences revolving around acceptance of illness, stigma and discrimination, medication consumption, sexual awareness, and use of coping mechanisms. HIV-negative children accepted their parents’ illnesses faster than HIV-positive children accepted their own illnesses; the later also reported facing more stigma and discrimination. HIV-negative children wanted their parents to take their medications, stay healthy, and pay their school fees; HIV-positive children viewed medication consumption as an ordeal necessary to keep them healthy. HIV-negative children wanted their parents to speak to them about sexual-related matters; HIV-positive children had lingering questions about relationships, use of condoms, marriage, and childbearing options. The majority of children coped by speaking about their circumstances to a person close to them and also self-withdrawing to be by themselves when feeling overwhelmed. Pending further studies conducted with larger sample sizes, the results of this study can be used by healthcare professionals to better facilitate disclosure between HIV-positive parents and their children of mixed HIV statuses.


2014 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro

Background. HIV disclosure is a challenging process for parents and healthcare professionals. The majority of HIV-infected persons live in Sub-Saharan Africa where HIV disclosure guidelines for a parent's and a child's illness are nonexistent. While there are two theoretical models of HIV disclosure, their utility in explaining disclosure in African cultures is largely unknown. 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. Thirty four participants consisting of 16 HIV-positive parents, 7 HIV-positive children, 5 HIV-negative children, and 6 healthcare professionals were engaged in in-depth, semistructured interviews. Interview data were analyzed using the modified Van Kaam method. Results. HIV disclosure is a complex process involving factors such as a parent's and child's state of health, ART consumption, stigma/discrimination, and sexuality concerns. Parents take years to prepare for and perform disclosure of theirs and/or their children's illnesses to their infected and noninfected children. They perform disclosure when they feel ready in stages, based on the birth order of their children, the perception of “the right time,” the child's understanding and maturity level, and whose illness(es) they intend to disclose at the time of disclosure. Conclusion. HIV disclosure is challenging and each disclosure session performed is planned and geared to the particular child receiving disclosure. Parents and healthcare professionals are challenged by disclosure and can benefit from creation of HIV disclosure guidelines accompanied by culturally sensitive manuals and training programs aimed at parents and healthcare professionals to ease the process of disclosure.


2014 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro

HIV disclosure from parent to child is complex and challenging to HIV-positive parents and healthcare professionals. This study was conducted 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 underwent semistructured in-depth interviews. Data was analyzed using the Van Kaam method in NVivo 8. Seven themes emerged that spanned the disclosure process. Presented here is data on the theme about how participants recommend full disclosure be approached to HIV-positive and negative children. Participants recommended disclosure as a process starting at five years 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 disclosure considerations include the parent’s and/or child’s health statuses, the number of infected persons’ illnesses to be disclosed to the child, the child’s maturity and understanding level, addressing important life events (e.g., taking a national school examination), and the person best suited to deliver full disclosure to the child. Recommendations are made for inclusion into HIV disclosure guidelines, manuals, and programs.


2014 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro

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.


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