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

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.

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.

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.

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

10.7287/peerj.preprints.946v1 ◽

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.

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.

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.

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.

A couple’s marital disharmony and its psychological effects on their children during the HIV disclosure process in Kenya

10.7287/peerj.preprints.419 ◽

2014 ◽

Author(s):

Grace Gachanja

Keyword(s):

Hiv Testing ◽

Family Cohesion ◽

Structured Interview ◽

Hiv Disclosure ◽

Psychological Effects ◽

Hiv Positive ◽

Published Data ◽

Full Disclosure ◽

The Family ◽

Gap Data

HIV-positive parents are challenged with disclosure to their children. Limited published data exists on how HIV-positive parents perform disclosure to all their children in the household. To start addressing this gap, data is presented on a couple’s HIV disclosure experiences to all their children. The couple participated in a larger study conducted to understand the lived experiences of HIV-positive parents and their children during the disclosure process in Kenya. Each underwent an individualized in-depth semi-structured interview. Their 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. The couple’s narration of their diagnoses, and disclosure experiences to their children differed significantly. Ongoing poor paternal health caused persistent inquisitive questions from children. A poor paternal-children relationship, accompanied with his avoidance and non-involvement in disclosure matters caused the mother to fully disclose both parents’ illnesses to the four oldest children. These children were affected by disclosure and held animosity towards their father. One had an emotional outburst directed at the father, while another still displayed anger and withdrawal years later. Therefore, the couple was hesitant to fully disclose their illnesses to their youngest son and differed in how they wanted to disclose to him. HIV-positive parents with poor relationships among family members before HIV testing and/or disclosure should be provided with intense counseling aimed at increasing family cohesion. Extra support before, during, and after disclosure may be required for these families to increase positive outcomes.