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

PeerJ ◽  
2016 ◽  
Vol 4 ◽  
pp. e1662 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J. Burkholder
Keyword(s):  
Healthcare Professionals ◽  
Phenomenological Study ◽  
Unprotected Sex ◽  
Hiv Disclosure ◽  
Clinical Officer ◽  
Hiv Positive ◽  
Semistructured Interview ◽  
Hiv Status ◽  
Parents And Children ◽  
Hiv Negative

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.

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

2015 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro
Keyword(s):  
Support Groups ◽  
Qualitative Data ◽  
Healthcare Professionals ◽  
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.

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

2015 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro
Keyword(s):  
Support Groups ◽  
Qualitative Data ◽  
Healthcare Professionals ◽  
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.

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

2014 ◽  
Author(s):  
Grace Gachanja ◽  
Gary J Burkholder ◽  
Aimee Ferraro
Keyword(s):  
Lived Experiences ◽  
Healthcare Professionals ◽  
Hiv Disclosure ◽  
Hiv Positive ◽  
Full Disclosure ◽  
Children’S Perspectives ◽  
National School ◽  
To Receive ◽  
Depth Interviews ◽  
Hiv Negative

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.

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