Do Chinese parents with HIV tell their children the truth? A qualitative preliminary study of parental HIV disclosure in China

Background With the extended lifespan of people living with human immunodeficiency virus (HIV) due to the advent of antiretroviral therapy, the disclosure of HIV serostatus to their uninfected children is becoming more critical. However, limited data are available regarding parental HIV disclosure to children in China. We explore patterns of parental HIV disclosure and the reasons for disclosure or non‐disclosure to children. Methods A preliminary study was conducted using open‐ended questions in Guangxi, China in 2011 with 39 parents living with HIV. Results A majority of participants (77%) had not disclosed their HIV serostatus to their children. Participants who voluntarily disclosed tended to be older and were more likely to disclose to their adult children. Among parents who disclosed, reasons included a need for emotional and financial support, as well as feelings of obligation to their children. Among non‐disclosing parents, primary reasons included concerns that children were too young to understand, fear of being stigmatized, and fear of increased psychological burden to children. Conclusions Few parents with HIV disclosed their HIV status to their children. These data indicate the need for future research to explore disclosure issues in relation to children's age and the implementation of developmentally appropriate interventions and support systems for parents and children affected by HIV in China.     

Parental concerns about disclosure of a child's HIV/AIDS status in Singapore

A qualitative study was conducted to examine parental concerns over the issue of disclosure with those whose children were diagnosed with HIV/AIDS. Semi-structured interviews were conducted with seven parents and the main issues that arose from the interviews were (a) parents' explanation of their children's medical condition; (b) factors that influence disclosure; (c) factors that hinder disclosure; and (d) parents' perception on the appropriate time for disclosure. Parents viewed disclosure as a single event, as opposed to an ongoing process where varying levels of information on the illness was to be provided in accordance to the children's individual cognitive and emotional development.     

Social planning in Canada for families with HIV infection

Parents living with HIV and their children face complex medical and social problems. Whether the children are infected or not, they are all affected by the presence of HIV in a parent. The purpose of this article is to describe the problems of families with HIV and to propose social planning measures to respond to their psychosocial needs. It is based on a multicentre study that included in-depth interviews with 110 parents representing 91 Canadian families living with HIV. The study's findings and recommendations were reviewed by parents with HIV, social workers specializing in helping affected families, and a multidisciplinary consensus conference. This process identified six areas needing attention: stigma and disclosure; promoting and supporting family health; planning and transitions for the care of children; economic issues; cultural and immigrant issues; and education, advocacy, policy development, and research. Recommendations for action were made in each area.     

Disclosure of diagnosis and planning for the future in HIV-affected families in Europe

Information relating to disclosure of infection status in families affected by HIV and the existence of plans for the future social care of children with infected parents was collected as part of a larger survey on clinical and psychosocial service use of these families. Parents and alternative carers of HIV-affected children in follow-up in 10 paediatric centres from seven European countries were surveyed. A total of 182 questionnaires were returned: most (73%) were completed by parents, of whom 92% were HIV-infected. Of the 226 children cared for by the respondents, most (62%) were HIV-infected. Disclosure of both the child's and the parent's infection status was rare and found to be associated with child's age in both cases. Infected children living with their parents were less likely to know their diagnosis than those living in alternative care. Uninfected parents and carers were significantly more likely to want professional help with disclosing to an infected child than infected parents. Infected parents also face difficult decisions regarding the issue of who will care for their children when they are unable to. Half of the infected parents had made long-term plans for their children's future social care. European parents were more likely to have made such plans than those from elsewhere (mainly Africa) and parents with plans had known about their HIV infection for significantly longer than those without. Increasing numbers of vertically infected children are reaching adolescence as a result of improvements in the management of paediatric HIV infection. As both disclosure and planning for the future social care of HIV-affected children have been found to be strongly associated with child's age, the changing epidemiology of paediatric HIV highlights the need for more information on these issues in order to support families more effectively.     

HIV-negative children’s experiences and opinions towards parental HIV disclosure: a qualitative study in China

In HIV/AIDS research, few studies to date have evaluated ways to improve parental HIV disclosure practices using feedback from HIV-negative children who have recently experienced this event. We conducted semi-structured in-depth interviews with 20 children (aged 6–15) who were partially to fully aware of their parents’ HIV status in rural Guangxi, China. Of the 20 children, eight children who were of older age (11.38 years in average) endorsed parental HIV disclosure, five discouraged it and seven expressed uncertainty. Children’s different experiences and attitudes towards disclosure were seen to be associated with their family dynamics (especially the parent–child relationship), social support and care, experiences of stigma and discrimination, psychosocial suffering, comprehension of the disease and the children’s age. Our study contributes to building a child-centered comprehensive understanding for Chinese parental HIV disclosure. It is imperative that counselors and community advocates assess and help parents achieve optimal readiness preceding disclosure of their illness to their HIV-negative children.     

The context and process of pediatric HIV disclosure

This qualitative study sought to elicit the context and process of disclosure to children living with HIV (CLHIV) on antiretroviral treatment in Nigeria. The study, nested in a larger study, involved detailed interviews with 15 parent/caregivers of children ≥6 years, who had been told they were living with HIV. Most children were disclosed to at home by their parents/caregivers. The common reason for disclosure was related to the children taking their drugs. Disclosure was mostly unplanned and a one-off event, even when it was the healthcare worker who disclosed. The conversation about the child’s HIV status took place in private between the child and parent(s)/caregiver. Where several children were living with HIV in the family, parents/caregivers would usually disclose to the children at the same time, rather than individually. Children’s reaction to disclosure ranged from no reaction to shock and crying. Some parents felt they did not have the right skills to disclose. The disclosure decision model provides some insight into the disclosure process.     

Serostatus Disclosure to Sexual Partners by HIV-Infected Women Before and After the Advent of HAART

ABSTRACT

HIV-positive individuals have been encouraged by public health officials to disclose their HIV status to sexual partners. In deciding what to do, however, they must weigh what they see as the potential costs and benefits of disclosing or not disclosing. In the present report we examine the reasons women offer for disclosing or not disclosing their serostatus and the reactions to that disclosure among two matched samples of HIV-infected women. The first sample was interviewed in 1994–1996, before the widespread availability of HAART; while the second sample was interviewed from 2000–2003 after these medications were widely in use. The findings reveal striking similarities between the two time periods in women's reasons for sharing or not sharing their status with partners, and the reactions to disclosure they experienced. The reconceptualization of AIDS as a chronic illness, rather than an acute fatal one, did not appear to have diminished women's felt responsibility to share their diagnosis with potential sexual partners nor their fear that disclosure would be met with rejection. The data revealed that disclosure remains a highly stressful event for HIV-infected women and that they experience considerable emotional suffering as a result of the diminished sense of self-worth and physical attractiveness brought about by their diagnosis. These findings suggest that intervention efforts toward reducing the stigmatization of HIV/AIDS and for assisting women to manage the stress of disclosure and non-disclosure and address women's feelings of self-worth continue to be needed despite the advent of HAART.     

Attitudes of Thai caregivers of children with HIV infection towards HIV disclosure

Abstract

We sought to understand the attitude of caregivers of Thai children with HIV towards HIV disclosure by having 49 caregivers complete a disclosure questionnaire. Their children's median age was 6.9 years, with 55% being male. The children were all on antiretrovirals and had a median CD4 of 20%. None of the caregivers had disclosed to their child, and 37% did not intend to. The main reason for not disclosing was fear of causing the child psychological harm. Only 17% intended to tell the truth if asked by the child. Our caregivers are unprepared, have limited understanding about disclosure and are willing to lie to the child. There is a need to support Thai children and caregivers in disclosing HIV diagnosis.     

Examining HIV-positive parents' disclosure to their children: a biopsychosocial approach

In the post HAART era, the biopsychosocial issues now facing HIV-positive parents concerning disclosure of their status to their children need to be understood in the context of chronic disease. This article describes the experiences of 101 adult HIV-positive urban in-treatment mothers and fathers of school-age children on disclosure, psychological distress, social support, and symptom severity. Key variables associated with parents' HIV disclosure were the age of parent and of children in the household, parents' HIV-related symptoms, and parent ethnicity. Cultural and maturational, rather than psychological or social factors were significantly related to parents' HIV disclosure.     

Disclosure of HIV infection from the perspective of adolescents living with HIV/AIDS and their parents and caregivers

The purpose of this study was to identify relevant issues in the disclosure of HIV-positive status in children and adolescents, aiming to improve the quality of their healthcare. A qualitative study included adolescents living with HIV/ AIDS and their parents and caregivers at AIDS reference services in S?o Paulo and Santos, Brazil. In-depth interviews and focus group were used. The main reasons for disclosure were: poor treatment adherence, sexual maturity, adolescent's request, and inadequate procedures by medical staff. Disclosure was a critical moment for adolescents, with a strong impact on their life plans and horizons. Adolescents infected through sexual transmission and drug use reported the most problematic scenes involved in disclosure. Despite its initial negative impact, disclosure resulted in improved healthcare and better dialogue among the adolescents, caregivers, and healthcare providers. The adolescents also requested clear, no-nonsense, honest information. The authors conclude that health services need to actively provide an adequate approach to facilitate disclosure of HIV-positive status to children and adolescents, realizing that it is a long-term process supported by the family and a multidisciplinary team.     

'What if they ask how I got it?' Dilemmas of disclosing parental HIV status and testing children for HIV in Uganda

BACKGROUND: Limited research has been conducted outside Western settings on how HIV-positive parents decide to test and disclose their own HIV status to children. We conducted a qualitative study in 2001 and 2005 to assess parent attitudes and current counselling policy and practice regarding child testing and parental disclosure in Uganda prior to the roll-out of antiretroviral therapy. METHODS: Parent perspectives were obtained through extended in-depth interviews with 10 HIV-positive parents recruited from The AIDS Support Organization (TASO), Entebbe branch. Counselling policy and practice were explored through key informant interviews with directors and two counsellors from each of five Ugandan counselling institutions with national or regional coverage. RESULTS: Respondents had 51 children ranging from 4 to 36 years with a median age of 13. Five of 10 parents had disclosed their status to their children, usually to all, and four of these had tested one child for HIV. All those who tested any child had also disclosed their status to some or all of their children. Parents regularly worried that their children may be infected, but all preferred to wait for emergence of symptoms before considering HIV tests, citing fear of children's emotional reaction and lack of perceived benefits from knowing status. Counselling policy directors confirmed the absence of policy and training guidelines on the subject of parent-child disclosure. Counsellors reported improvising and giving inconsistent advice on this common concern of clients. CONCLUSIONS: Concerns over disclosure to children of parent's HIV status and testing children for HIV represent a major psychological burden for HIV-positive parents. Further research is needed, but current counselling practice could be improved now by adapting lessons learned from existing research.     

Disclosure and Impact of Maternal HIV+ Serostatus on Mothers and Children in Rural Haiti

Mothers living with HIV (MLWHs) in the United States have reported that one of their main challenges is the decision to disclose their HIV serostatus to their children and the potential consequences of their disclosure. Little is known about the experiences of MLWHs regarding disclosing their HIV serostatus to their children and the impact of maternal HIV serostatus disclosure in the island nations of the Caribbean. Study objectives were to identify the factors influencing maternal HIV serostatus disclosure, examine the breadth of maternal HIV serostatus, and understand the impact of disclosure on mothers and the children. Baseline interviews were conducted between 2006 and 2007 with 25 HIV-positive mothers and 26 children ages 10–17 participating in a pilot psychosocial support intervention for HIV-affected youth and their caregivers in Haiti. Interviews were transcribed verbatim and coded for topical themes by two investigators. Analysis of the interviews yielded several themes relevant to reasons for disclosure, including children’s experience of HIV stigma in the community, social support and encouragement from psychosocial intervention workers. The main themes related to breadth of disclosure were brief disclosure and explicit disclosure with some mothers sharing information about how they learned about their illness diagnosis and their medication. Themes related to impacts of disclosure included emotional reactions of children and mothers, and children’s desire to assist mothers with illness and become involved. These findings suggest the need to provide more psychosocial support to HIV-affected families in the Caribbean region.     

To Say or Not to Say: A Qualitative Study on the Disclosure of Their Condition by Human Immunodeficiency Virus–Positive Adolescents

PurposeHuman immunodeficiency virus (HIV)–positive adolescents face a number of challenges in dealing with their disease, treatment, and developmental tasks. This qualitative study describes some of the reasons why, and the extent to which, adolescents may or may not disclose their condition to others.MethodsA semistructured interview lasting 40–110 minutes was conducted with each of 29 adolescents 12–20 years old, 22 female and seven male) living in Switzerland. Interviews were tape recorded and transcribed verbatim. The analysis of the content of interviews allowed us to identify salient topics (e.g., disclosure), which were then explored in detail.ResultsOf 29 participants, eight had not disclosed their condition to anyone outside the family, 19 had disclosed it to good friends, and 16 had disclosed it to some teachers. Four participants had engaged in public disclosure, and six of 10 sexually active teenagers disclosed their status to their partners. The attitudes toward disclosure among younger adolescents were mostly related to those of the parents, particularly the mother. Older adolescents, engaged in their search for autonomy, tended to decide independently what to say and to whom. Although foster/adoptive parents would often encourage disclosure, biological parents, especially HIV-positive mothers, insisted on not disclosing the adolescent's status for fear of stigma.ConclusionThe health care team should systematically address the issue of disclosure with the adolescent and his family (or foster parents), the aim being to balance the right of the adolescent and that adolescent's family to maintain privacy against the concerns of sexual partners, as well as the adolescent's interest in divulging HIV status to relatives, school staff, and friends.     

HIV/AIDS case managers and client HIV status disclosure: perceived client needs, practices, and services

People living with HIV/AIDS often need assistance in deciding whether or how to disclose their HIV status to others, and case managers are in a unique position to offer this assistance. The current study surveyed 223 case managers providing services to people living with HIV/ AIDS in NewYork State. The survey was conducted anonymously, and case managers were sampled at the agency level. Results showed that two-thirds of case managers routinely discuss disclosure issues with their HIV-positive clients. However, case managers often felt that they lacked the resources to provide assistance with disclosure decisions, and 66 percent of those who routinely discuss disclosure issues had not received training in assisting with disclosure to sex and injection drug-sharing partners. HIV disclosure issues were also seen by case managers as only one of many pressing issues facing their HIV-positive clients; other pressing issues were housing, food, medical care, mental health treatment, and preventing HIV transmission. These results indicate a need for training and resources to facilitate HIV status disclosure assistance services offered by case managers.     

Donor type and parental disclosure following oocyte donation

ObjectiveTo ascertain the perspectives of parents of children conceived via oocyte donation regarding donor anonymity and disclosure of the nature of their conception to their children.MethodsInformation was gathered by means of an anonymous online survey initiated by the Donor Sibling Registry, in which 108 parents with 143 children conceived following oocyte donation and aged between one year and 15 years participated.ResultsParental use of an anonymous or open-identity donor-and regardless of parental choice of donor-makes very little difference to the timing of parental disclosure to their donor-conceived child about their conception. The median age of children at disclosure is about 3.5 years; UK/Australian parents seem more ready to tell their children at an early stage (median age around two years) than North American parents (median age around 4.5 years), although about three quarters of all children have been told by the age of six years. Considerable ambiguity among parents who intend to disclose to their children as to the optimal age of disclosure is evidenced.ConclusionsParents' experiences of disclosure to children at different ages need to be more thoroughly examined in order to establish a coherent body of knowledge that may facilitate improved evidence-based parental decision making.     

Children and adolescents living with HIV positive parents: Emotional and behavioural problems

Abstract

This study explores the emotional and behavioural problems in children living with an HIV-positive parent, and identifies specific high-risk and protective factors for their psychological well-being. Data were collected on 718 parents living with HIV and on 1136 HIV-affected children in a European multi-centre study (EUROSUPPORT IV) adopting a cross-sectional and retrospective study design. Sociodemographic characteristics, HIV-related stressors, variables relating to caregiving and outcome variables relating to family functioning and children's symptoms were assessed using a self-reported questionnaire. Results indicated a low level of parental HIV disclosure to children, and an elevated level of behavioural symptoms in HIV-affected children as reported by parents. Children had experienced a high degree of distressing life events. In multivariate analysis, perceived healthy family functioning emerged as protective for a low degree of behavioural symptoms in children and adolescents. The results call for a shift towards family-centred service delivery in HIV care and counselling. Service implications are discussed in the light of increasing numbers of women and couples living with HIV who become parents and need tailored support in facing the challenges of being a caregiver living with HIV.     

学龄前儿童家长意外伤害知识-态度-行为及其相关因素分析

目的:了解学龄前儿童家长意外伤害知识、态度、行为的现状,分析其影响因素。方法:采用问卷调查方法对228名学龄前儿童家长进行调查。结果:家长意外伤害的平均知识得分为(72.65±0.6)分;态度得分(68.54±1.08)分;行为得分(72.77±0.86)分。家长的文化、职业、家庭人口数、父母关系、管教方式对意外伤害知识得分的影响显著,家庭收入、儿童年龄对家长态度得分影响显著。家长从社区宣传中获得知识只占14.9%。结论:家长对儿童意外伤害的KAP是相互关联的。家长意外伤害知识欠缺,随着儿童年龄增长,家长侥幸心理增加,社区卫生工作者应加强儿童意外伤害的健康教育。     

Care and secrecy: Being a mother of children living with HIV in Burkina Faso

Home care has become a central component of the response to the HIV/AIDS epidemic, displacing caregiving work onto women. While increasing interest has been paid to HIV/AIDS care with a focus on ailing adults and orphan foster care, the issue of caring for children living with HIV has received little attention in the social sciences. Based on ethnographic material gathered in Burkina Faso between November 2005 and December 2006, the aim of this paper was to gain understanding of women who mother and care for children living with HIV in resource-limited countries. The study involved participant observation in community-based organizations in Burkina Faso and semi-structured interviews with 20 women mothering HIV-positive children as well as 15 children infected with HIV, aged between 8 and 18 years. In daily care mothers face many great challenges, ranging from the routine of pill-taking to disturbing discussions with children asking questions about their health or treatment. The results also show how HIV/AIDS-related stigma adds an additional layer to the burden of care, compelling mothers to deal with the tension between secrecy surrounding the disease and the openness required in providing care and receiving social support. As mothers live in fear of disclosure, they have to develop concealment strategies around children's treatment and the nature of the disease. Conversely, some mothers may share their secret with kin members, close relatives or their children to gain social support. As HIV/AIDS care is shaped by secrecy, these findings shed light on mothers' isolation in child care within a context of changing patterns of family bonds and lack of formal psychosocial support addressing child-related issues. Finally, women's engagement in child care invites us to look beyond the essentialist approach of women's vulnerability conveyed by international discourse to characterise the situation of women facing the HIV/AIDS impact.     

Survey finds broad support for AIDS education in schools

The Kaiser Family Foundation commissioned a survey to determine societal attitudes toward school-based HIV/AIDS education and prevention, needle exchange programs, and other HIV/AIDS-related issues. The survey also examined how much Americans know about HIV disease and how they feel about AIDS. The survey found widespread support for AIDS education in schools, and two-thirds of those surveyed favor giving clean needles to injection drug users. Eight in ten parents with children under the age of 21 said they were concerned about their children contracting HIV. Respondents ranked HIV as the nation's number one health concern, and the vast majority of those surveyed knew how HIV was transmitted.