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

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.

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 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.

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

10.7287/peerj.preprints.418v1 ◽

2014 ◽

Author(s):

Grace Gachanja ◽

Gary J Burkholder ◽

Aimee Ferraro

Keyword(s):

Phenomenological Study ◽

Theoretical Models ◽

Hiv Disclosure ◽

Sub Saharan Africa ◽

Hiv Positive ◽

Sub Saharan ◽

Art Consumption ◽

The Right ◽

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.

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

10.7287/peerj.preprints.1726v1 ◽

2016 ◽

Author(s):

Grace Gachanja ◽

Gary J Burkholder ◽

Aimee Ferraro

Keyword(s):

Phenomenological Study ◽

Structured Interview ◽

Hiv Disclosure ◽

Clinical Officer ◽

Hiv Positive ◽

Global Challenge ◽

Related Information ◽

Asking Questions ◽

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.

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

10.7287/peerj.preprints.418 ◽

2014 ◽

Author(s):

Grace Gachanja ◽

Gary J Burkholder ◽

Aimee Ferraro

Keyword(s):

Phenomenological Study ◽

Theoretical Models ◽

Hiv Disclosure ◽

Sub Saharan Africa ◽

Hiv Positive ◽

Sub Saharan ◽

Art Consumption ◽

The Right ◽

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.

Marital disharmony in a couple's marriage and its psychological effects on their children during the HIV disclosure process in Kenya

10.7287/peerj.preprints.1327 ◽

2015 ◽

Author(s):

Grace Gachanja

Keyword(s):

Case Report ◽

Hiv Disclosure ◽

Psychological Effects ◽

Hiv Positive ◽

Cohabiting Couples

The aim of this research brief is to summarize a case report study that described an HIV-positive married couple’s poor disclosure experience of their illnesses to all their children in the household. It is important to communicate this couple’s HIV disclosure experience to healthcare professionals so that they are aware of the problems that can occur if married or cohabiting couples do not collaborate with each other during the disclosure process. The data presented in the case report study and in this research brief should be used to provide targeted counseling to HIV-positive parents or cohabiting couples considering disclosure to their children.

HIV-positive parents disclosure-related preparation activities in Kenya

10.7287/peerj.preprints.417 ◽

2014 ◽

Author(s):

Grace Gachanja ◽

Gary J Burkholder ◽

Aimee Ferraro

Keyword(s):

Support Group ◽

Hiv Disclosure ◽

Hiv Positive ◽

Religious Activities ◽

Structured Interviews ◽

Parent Child Relationship ◽

Child Relationship ◽

Qualitative Phenomenological ◽

Timely Delivery

Background. HIV disclosure from parent to child is a complex and challenging issue that needs to be approached carefully. Little is known about how parents prepare for and perform disclosure to children in resource-poor nations and what resources are needed. This study was conducted to describe the lived experiences of HIV-positive parents and their children during the disclosure process in Kenya. Methods. This qualitative phenomenological study's data was collected using in-depth semi-structured interviews with 34 participants consisting of HIV-positive parents, HIV-positive and negative children, and healthcare professionals. The Van Kaam method was used to analyze the data. Results. Parents take years to prepare for disclosure, proceeding when they perceive themselves capable and ready; and their children are receptive to the news. Preparation activities include thinking about and making disclosure plans, reading information, teaching children about the disease without disclosure while improving the parent-child relationship, praying regularly and attending religious activities, seeking counseling, and attending support group meetings. Conclusion. Parents perform a number of activities to get themselves and their children ready for disclosure. These activities are crucial in the timely delivery of disclosure. Understanding the importance of these activities helps healthcare professionals assist parents to deliver disclosure faster after diagnosis of illness.

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

10.7287/peerj.preprints.1726 ◽

2016 ◽

Author(s):

Grace Gachanja ◽

Gary J Burkholder ◽

Aimee Ferraro

Keyword(s):

Phenomenological Study ◽

Structured Interview ◽

Hiv Disclosure ◽

Clinical Officer ◽

Hiv Positive ◽

Global Challenge ◽

Related Information ◽

Asking Questions ◽

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.

Patterns and predictors of disclosure of HIV positive status among youth living with HIV in Ibadan, Nigeria

International Journal of Adolescent Medicine and Health ◽

10.1515/ijamh-2017-0086 ◽

2018 ◽

Vol 0 (0) ◽

Author(s):

Adesola Olumide ◽

Eme Owoaje

Keyword(s):

Support Groups ◽

Sexual Partner ◽

Cross Sectional Study ◽

Hiv Disclosure ◽

Hiv Positive ◽

Common People ◽

Cross Sectional ◽

People First ◽

Youth Living With Hiv ◽

Ibadan Nigeria

AbstractBackgroundInformation on disclosure of HIV status among youth is sparse in spite of the fact that they bear a significant burden of the HIV epidemic. Our objective was to determine the predictors of HIV disclosure among youth aged 18–35 years in Ibadan, Nigeria.MethodsA cross-sectional study was conducted among youth with HIV attending two HIV support groups and one ARV clinic in Ibadan, Nigeria. Information was obtained with the aid of an interviewer-administered questionnaire. Descriptive and analytic statistics were conducted.ResultsThere were 170 clients with a mean age of 29.6 ± 3.9 years; 140 (82.4%) were female and 139 (81.8%) had disclosed their status. Common people first informed included respondents’ mother 49 (35.3%), spouse 39 (28.1%) or father, 38 (27.3%). Disclosure to an unmarried sexual partner was low as only six (12.0%) of the 50 single youth who had a current sexual partner had disclosed their status to him/her. Youth who were aware that their spouse/partner was HIV positive (OR = 9.87; CI = 1.09–88.83) or negative (OR = 9.98; CI = 1.18–84.70) were more likely to have disclosed their status than those unaware of their spouse/partners’ status. Disclosure was also higher among members of an HIV support group (OR = 3.32; CI = 1.03–10.72).ConclusionsMany respondents had disclosed their status although disclosure to an unmarried sexual partner was low. Interventions to improve HIV disclosure especially among unmarried sexually active youth could improve disclosure and overall management of HIV in our study area.

Marital disharmony in a couple's marriage and its psychological effects on their children during the HIV disclosure process in Kenya

10.7287/peerj.preprints.1327v1 ◽

2015 ◽

Author(s):

Grace Gachanja

Keyword(s):

Case Report ◽

Hiv Disclosure ◽

Psychological Effects ◽

Hiv Positive ◽

Cohabiting Couples

The aim of this research brief is to summarize a case report study that described an HIV-positive married couple’s poor disclosure experience of their illnesses to all their children in the household. It is important to communicate this couple’s HIV disclosure experience to healthcare professionals so that they are aware of the problems that can occur if married or cohabiting couples do not collaborate with each other during the disclosure process. The data presented in the case report study and in this research brief should be used to provide targeted counseling to HIV-positive parents or cohabiting couples considering disclosure to their children.