scholarly journals Child, parent, and healthcare professionals’ perspectives on HIV infection status disclosure to children

2014 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro
Keyword(s):  
Healthcare Professionals ◽  
Phenomenological Study ◽  
Theoretical Models ◽  
Hiv Disclosure ◽  
Sub Saharan Africa ◽  
Hiv Positive ◽  
Sub Saharan ◽  
Art Consumption ◽  
The Right ◽  
Qualitative Phenomenological

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.

scholarly journals Child, parent, and healthcare professionals’ perspectives on HIV infection status disclosure to children

2014 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro
Keyword(s):  
Healthcare Professionals ◽  
Phenomenological Study ◽  
Theoretical Models ◽  
Hiv Disclosure ◽  
Sub Saharan Africa ◽  
Hiv Positive ◽  
Sub Saharan ◽  
Art Consumption ◽  
The Right ◽  
Qualitative Phenomenological

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.

scholarly journals Healthcare professionals' perspectives on HIV disclosure of a parent's and a child's illness in Kenya

2016 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro
Keyword(s):  
Healthcare Professionals ◽  
Phenomenological Study ◽  
Structured Interview ◽  
Hiv Disclosure ◽  
Clinical Officer ◽  
Hiv Positive ◽  
Global Challenge ◽  
Related Information ◽  
Asking Questions ◽  
Qualitative Phenomenological

Background: Many HIV-affected families have both parent(s) and child(ren) infected. HIV disclosure to children continues to be a great global challenge for HIV-positive parents and healthcare professionals (HCPs); parents and HCPs differ on how and when to disclose to children. Methods: Six HCPs including a physician, clinical officer, psychologist, registered nurse, social worker, and a peer educator participated in a larger qualitative phenomenological study conducted to describe the lived experiences of HIV-positive parents and their children during the disclosure process in Kenya. Each HCP underwent an in-depth, semi-structured interview; transcribed data were analyzed using the modified Van Kaam method in NVivo8. Results: Despite HCPs providing parents with regular advice on the benefits of HIV disclosure, fear of stigma, discrimination, and disclosure consequences caused parents to delay disclosure of a parent’s and/or a child’s illness to their HIV-negative and positive children respectively for lengthy periods. While awaiting parental consent for full disclosure, HCPs were forced to provide age-appropriate disease-related information to children. HCPs preference however, was to fully disclose to children in their parents’ presence at the clinic, when children started asking questions and/or displayed maturity and understanding of the illness. Conclusion: Parents are known to prefer disclosing to their children at a time and place of their choosing. Conversely, it appears that HCPs may prefer to disclose to children when they judge the time as being right. For favorable disclosure outcomes, further studies are needed to reconcile the most suitable timing, setting, and person to disclose to HIV-positive and negative children.

scholarly journals Healthcare professionals' perspectives on HIV disclosure of a parent's and a child's illness in Kenya

2016 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro
Keyword(s):  
Healthcare Professionals ◽  
Phenomenological Study ◽  
Structured Interview ◽  
Hiv Disclosure ◽  
Clinical Officer ◽  
Hiv Positive ◽  
Global Challenge ◽  
Related Information ◽  
Asking Questions ◽  
Qualitative Phenomenological

Background: Many HIV-affected families have both parent(s) and child(ren) infected. HIV disclosure to children continues to be a great global challenge for HIV-positive parents and healthcare professionals (HCPs); parents and HCPs differ on how and when to disclose to children. Methods: Six HCPs including a physician, clinical officer, psychologist, registered nurse, social worker, and a peer educator participated in a larger qualitative phenomenological study conducted to describe the lived experiences of HIV-positive parents and their children during the disclosure process in Kenya. Each HCP underwent an in-depth, semi-structured interview; transcribed data were analyzed using the modified Van Kaam method in NVivo8. Results: Despite HCPs providing parents with regular advice on the benefits of HIV disclosure, fear of stigma, discrimination, and disclosure consequences caused parents to delay disclosure of a parent’s and/or a child’s illness to their HIV-negative and positive children respectively for lengthy periods. While awaiting parental consent for full disclosure, HCPs were forced to provide age-appropriate disease-related information to children. HCPs preference however, was to fully disclose to children in their parents’ presence at the clinic, when children started asking questions and/or displayed maturity and understanding of the illness. Conclusion: Parents are known to prefer disclosing to their children at a time and place of their choosing. Conversely, it appears that HCPs may prefer to disclose to children when they judge the time as being right. For favorable disclosure outcomes, further studies are needed to reconcile the most suitable timing, setting, and person to disclose to HIV-positive and negative children.

scholarly journals Caring for HIV-positive children: healthcare providers' pre-and post-disclosure experiences in Nairobi, Kenya

2019 ◽  
Vol 13 (3) ◽  
pp. 1-7
Author(s):  
Drusilla Makworo ◽  
Theresa Odero
Keyword(s):  
Health Professionals ◽  
Healthcare Providers ◽  
Hiv Disclosure ◽  
Sub Saharan Africa ◽  
Hiv Positive ◽  
Number Of Children ◽  
High Resource ◽  
Main Challenge ◽  
Before And After ◽  
Sub Saharan

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.

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

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/

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

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/

scholarly journals HIV disclosure perspectives from HIV-positive parents, HIV-positive children, and HIV-negative children

2014 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro
Keyword(s):  
Good Health ◽  
Hiv Disclosure ◽  
Sub Saharan Africa ◽  
Hiv Positive ◽  
Original Research ◽  
Research Article ◽  
Sub Saharan ◽  
Key Aspects ◽  
Hiv Negative

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

scholarly journals A rapid assessment of HIV post-disclosure experiences of urban school-aged children in Kenya

2015 ◽  
Author(s):  
Grace Gachanja
Keyword(s):  
Rapid Assessment ◽  
Hiv Disclosure ◽  
Sub Saharan Africa ◽  
Hiv Positive ◽  
School Aged Children ◽  
Stigma And Discrimination ◽  
Medication Consumption ◽  
Sub Saharan ◽  
Acceptance Of Illness ◽  
Hiv Negative

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.

scholarly journals Parents' phases and children's stages of HIV disclosure

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 ◽  
Hiv Negative

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.

scholarly journals Parents' phases and children's stages of HIV disclosure

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 ◽  
Hiv Negative

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.

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