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Spaces for talking: Communication patterns of Children on Antiretroviral Therapy in Uganda

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... 13,20,25 Eighteen caregivers had not informed their children that they had HIV. We found that, consistent with previous studies, 9,18,35,36 such caregivers lied to their children about the reasons for taking their medicines and going to the clinic. They used deception when children questioned them about their status and why they were taking the medication, although this presented them with opportunities to tell their children that they had HIV. ...
... Similar patterns of communication were reported in studies conducted with children who described communication with their caregivers as being limited to their taking their medicine. 35,43 Similarly, in the current study most of the conversations between caregivers and children revolved around medicines rather than the HIV diagnosis, particularly among caregivers who had not disclosed. The findings of this study are consistent with those of other studies 35,37,43 and underscore the importance of on-going communication about ART between caregivers and children to create open spaces for communication and thus to foster adherence. ...
... 35,43 Similarly, in the current study most of the conversations between caregivers and children revolved around medicines rather than the HIV diagnosis, particularly among caregivers who had not disclosed. The findings of this study are consistent with those of other studies 35,37,43 and underscore the importance of on-going communication about ART between caregivers and children to create open spaces for communication and thus to foster adherence. ...
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Typically, children with perinatal HIV (PHIV) receive antiretroviral treatment (ART) for a long time prior to receiving disclosure. Communication with children about HIV and treatment is critical for monitoring adherence and retention in care. However, there is a dearth of information on communication between caregivers and their children. This study examines what and how caregivers tell their their children about their illness and medication in the pre-disclosure and post-disclosure period. A qualitative study using semi-structured one-on-one interviews and focus group discussions was conducted with caregivers recruited via purposive sampling from a rural sub-district in South Africa. The interviews were analyzed using thematic analysis. The sample consisted of 38 caregivers, 24 of whom were the children’s biological mothers, 20 had disclosed to the children and 18 had not done so. Caregivers who had disclosed had told their children the truth and named the disease as HIV, but communication about HIV was infrequent and focused on pill taking. Those who had not disclosed had lied, deflected illness-related information, and attributed the children’s ill health to co-morbid conditions. To enforce adherence, most caregivers used coercion and threats of the grave consequences of non-adherence as a communication strategy. Those who had not disclosed used deception, deflecting, and coercion as strategies for coping through the pre-disclosure period. There is a need for healthcare workers to prepare, support, and empower caregivers to develop appropriate responses to children’s questions and to understand the implications of deception on future full disclosure and children’s acceptance of their HIV status.
... Although disclosure of HIV status to children tends to be a process that raises anxiety for carers and parents (Kawuma, Bernays, Siu, Rhodes, & Seeley, 2014;Lowenthal et al., 2014;Bernays et al., 2015a;Bernays et al., 2015b), it is sometimes treated as an isolated event and not part of an established communication pattern between children and carers (Vaz et al., 2010). In the Ugandan context, sociocultural norms and beliefs have been found to influence communication related to HIV status, knowledge and care between carers and children (Daniel, Apila, Bjørgo, & Lie, 2007;Kajubi et al., 2014a;Kajubi et al., 2014b). Daniel et al. (2007) explore the concept of 'cultural silence' and its impact on resilience among Ugandan infected and affected parents and orphans. ...
... Sociocultural norms dictating levels of openness in communication around HIV may also impact on children's adherence to anti-retroviral treatment. Research in Uganda has explored how communication hierarchies within families influence children's HIV treatment behaviour and practices (Kajubi et al., 2014a;Kajubi et al., 2014b). A study from Zimbabwe that focused on adolescent preferences in HIV disclosure practices also reveals that the potential dangers of maintaining secrecy around HIV status leads to accidental discovery by adolescents (Kidia et al., 2014). ...
... Research suggests that lack of disclosure can lead to negative outcomes for children who may discover inadvertently about their HIV status from others in the community or at school or through their own gradual realisation related to their need to take drugs, or their experience of symptoms (Kidia et al., 2014). Other studies have also pointed to the potential psychological and physical dangers for children of 'cultural silence' on sensitive subjects that relate to sex and death (Daniel et al., 2007;Kajubi et al., 2014a;Kajubi et al., 2014b;Kawuma et al., 2014). For example, children may adopt feelings of shame and stigma that are fostered by the secrecy surrounding HIV (Kawuma et al., 2014), or may find themselves unable to discuss important questions about their medication with carers or health workers where communication lacks openness and is not child-centred (Kajubi et al., 2014a). ...
Article
There are limited data on the challenges faced by carers, in particular older carers, in managing the difficult task of status disclosure for HIV-positive children. We report findings from qualitative interviews with 18 care dyads of older people and HIV-positive children living in rural south-western Uganda. Our data provide insights into perceptions and norms influencing communication during and following disclosure among both carers and children, including those shaped by gendered expectations of girls’ and boys’ sexual behaviour. Young participants reported several advantages of knowing their status and showed considerable resilience in the face of HIV disclosure. Better and more support is needed to help health workers and carers (particularly older carers) manage cross-generational communication around HIV disclosure and other related aspects of sexual and reproductive health as critical aspects of children’s psychosocial development and well-being. Keywords: HIV disclosure, HIV-positive children, older carers, psychosocial well-being
... ''What the medicines are for'' was the least commonly reported topic of talk, while ''the time to take the medicines'' was by far the most mentioned by children. Other studies [18,34,35], as well as our own findings from the qualitative part of our research referred to in another paper [36], show that communication with children in settings such as Uganda is often directive, rather than participatory, with few opportunities for questioning, discussion, and joint decision making. When and how to take the medicines were talked about with caregivers but the communication was often directive and one-way, with caregivers instructing and reminding the children, rather than discussing the bigger issues of diagnosis, prognosis and lifelong medication. ...
... Nearly two thirds of caregivers reported that children did not ask what the medicines were for. However, qualitative research revealed that many children did want to know more about why they were taking medicines [36]. Either caregivers ignored children's curiosity or children actually did not pose questions directly to their caregivers. ...
... Both children and their caregivers could have given socially desirable answers. However, the quantitative responses were substantiated by open-ended questions in the survey qualitative interviews and participant observation [36]. ...
Article
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Introduction: Knowledge of antiretroviral therapy (ART) among children with HIV depends on open communication with them about their health and medicines. Guidelines assign responsibility for communication to children's home caregivers. Other research suggests that communication is poor and knowledge about ART is low among children on treatment in low-income countries. This study sought to describe communication about medicine for HIV in quantitative terms from the perspectives of both children and caregivers. Thereafter, it established the factors associated with this communication and with children's knowledge about their HIV medicines. Methods: We undertook a cross-sectional survey of a random sample of 394 children with HIV on treatment and their caregivers at nine health facilities in Jinja District, Uganda. We assessed reported frequency and content of communication regarding their medicines as well as knowledge of what the medicines were for. Logistic regression analysis was used to determine the factors associated with communication patterns and children's knowledge of HIV medicines. Results: Although 79.6% of the caregivers reported that they explained to the children about the medicines, only half (50.8%) of the children said they knew that they were taking medicines for HIV. Older children aged 15-17 years were less likely to communicate with a caregiver about the HIV medicines in the preceding month (OR 0.5, 95% CI 0.3-0.7, p=0.002). Children aged 11-14 years (OR 6.1, 95% CI 2.8-13.7, p<0.001) and 15-17 years (OR 12.6, 95% CI 4.6-34.3, p<0.001) were more likely to know they were taking medicines for HIV compared to the younger ones. The least common reported topic of discussion between children and caregivers was "what the medicines are for" while "the time to take medicines" was by far the most mentioned by children. Conclusions: Communication about, and knowledge of, HIV medicines among children with HIV is low. Young age (less than 15 years) was associated with more frequent communication. Caregivers should be supported to communicate diagnosis and treatment to children with HIV. Age-sensitive guidelines about the nature and content of communication should be developed.
... He also found health staff to be too busy to engage with the unique needs and experiences of children and adolescentsresorting to an authoritarian style of communication and disease management. Similar observations were made by Kajubi et al. (2014) in Uganda and by Class (2014) in Mozambique, with Class (2014) further noting trust and communication issues arising between children's parents and health staff. ...
... Although dependent on each individual child's abilities and developmental stage, many children and youth play an active role in sustaining their health by engaging with health-enabling actors in their social environment (Skovdal & Daniel, 2012). This is illustrated in many of the articles, for example through their participation in teen and kids' clubs (Mupambireyi et al., 2014) and by persistently seeking information about their illness from caregivers (Kajubi et al., 2014). In addition to highlighting the limits of social participation in clinical settings, manifested in authoritarian communication by clinicians, Mattes (2014a) demonstrates how children and youth develop an understanding of their health condition by 'putting the pieces together'. ...
... Social support structures, whether formal groups or informal networks, play an instrumental role in the HIV response Skovdal et al., 2013). A number of articles included in this Issue speak to the role of support groups in aiding HIV treatment, care and support of children and youth living with HIV (e.g., Strasser and Gibbons, 2014;Lowenthal et al., 2014;Mupambireyi et al., 2014;Kajubi et al., 2014). Vujovic et al. (2014) propose a group approach to addressing sexual and reproductive health issues. ...
... Sociocultural norms are likely to influence disclosure conversations. For example, in Uganda discussing the routes of HIV transmission with young people as it relates to sexuality and the sexual behavior of their parents is problematic (13,14). Despite this, few studies have been conducted to investigate what influences caregivers' decision-making process in this regard in low-income settings. ...
... Encouraging appropriate and timely disclosure to young people about their own HIV is a central tenet in the care and management of pediatric HIV (13). Disclosure of HIV diagnosis allows young people living with HIV to participate in making decisions they deem appropriate and to be aware of issues regarding their treatment, care, and sexuality. ...
Article
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Despite great advances in pediatric HIV care, rates and the extent of full disclosure of HIV status to infected children remain low especially in resource-constrained setting. The World Health Organisation recommends that, by the age of 10–12 years old, children should be made fully aware of their HIV-positive status. However, this awareness is often delayed until much later in their adolescence. Few studies have been conducted to investigate what influences caregivers’ decision-making process in this regard in low-income settings. In this article, we present an analysis of care dyads of caregivers and HIV-positive young people in Kampala, Uganda, as part of the findings of a longitudinal qualitative study about young people’s adherence to antiretroviral therapy embedded in an international clinical trial (BREATHER). Repeat in-depth interviews were conducted with 26 young people living with HIV throughout the course of the trial, and once-off interviews with 16 of their caregivers were also carried out toward the end of the trial. In this article, we examine why and how caregivers decide to disclose a young person’s HIV status to them and explore their feelings and dilemmas toward disclosure, as well as how young people reacted and the influence it had on their relationships with and attitudes toward their caregivers. Caregivers feared the consequences of disclosing the young person’s positive status to them and disclosure commonly occurred hurriedly in response to a crisis, rather than as part of an anticipated and planned process. A key impediment to disclosure was that caregivers feared that disclosing would damage their relationships with the young people and commonly used this as a reason to continue to postpone disclosure. However, young people did not report prolonged feelings of blame or anger toward their caregivers about their own infection, but they did express frustration at the delay and obfuscation surrounding the disclosure process. Our findings can inform the ways in which mainstream HIV services support caregivers through the disclosure process. This includes providing positive encouragement to disclose fully and to be more confident in initiating and sustaining the timely process of disclosure.
... Perceived social support through peers was more strongly associated with social self-disclosure than support through the family environment, which is in line with the findings on the family context, as explained above. This is also corroborated by Kajubi, Bagger, Katahoire, Kyaddondo, and Whyte (2014), who found that intra-family communication patterns supported adolescents in medication use but much less in communication skills. At the interpersonal level, disclosure can create opportunities for adherence and psychosocial support from family members and peers (Mburu et al., 2014). ...
... While current models of HIV service delivery fall short in considering the broader needs of children and adolescents living with HIV including their HIV disclosure needs (Skovdal & Belton, 2014), interventions are needed that facilitate autonomous decision-taking about social disclosure, equipping ALHIV with skills increasing their self-efficacy to disclose and gain control 43 over the process. As it has been shown that family environments can be enabling in care, but much less so in communication skills (Kajubi et al., 2014), safe environments need to be constructed and integrated in regular HIV care in which ALHIV can build trustful relationships with their peers, and practice disclosure skills. ALHIV should have a voice in developing and buildings such locally relevant interventions (Mburu et al., 2013). ...
Article
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Adolescents living with HIV (ALHIV) face many psychosocial challenges, including HIV disclosure to others. Given the importance of socialization during the adolescent transition process, this study investigated the psychological and social factors influencing self-disclosure of own HIV status to peers. We examined social HIV self-disclosure to peers, and its relationship to perceived HIV-related stigma, self-efficacy to disclose, self-esteem, and social support among a sample of n = 582 ALHIV aged 13–17 years in Kampala, Uganda, and Western Kenya. Data were collected between February and April 2011. Among them, 39% were double orphans. We conducted a secondary data analysis to assess the degree of social disclosure, reactions received, and influencing factors. Interviewer-administered questionnaires assessed medical, socio-demographic, and psychological variables (Rosenberg self-esteem scale; self-efficacy to disclose to peers), HIV-related stigma (10-item stigma scale), and social support (family–life and friends). Descriptive, bivariate, and logistic regression analyses were performed with social self-disclosure to peers with gender as covariates. Almost half of ALHIV had told nobody (except health-care providers) about their HIV status, and about 18% had disclosed to either one of their friends, schoolmates, or a boy- or girlfriend. Logistic regression models revealed that having disclosed to peers was significantly related to being older, being a paternal orphan, contributing to family income, regular visits to the HIV clinic, and greater social support through peers. Low self-efficacy to disclose was negatively associated to the outcome variable. While social self-disclosure was linked to individual factors such as self-efficacy, factors relating to the social context and adolescents’ access to psychosocial resources play an important role. ALHIV need safe environments to practice disclosure skills. Interventions should enable them to make optimal use of available psychosocial resources even under constraining conditions such as disruptive family structures.
... Sharing an HIV status carries a unique challenge for young people with PAH with concerns about revealing their mother's (and other family members') HIV status [37]. Negative parental sharing attitudes, including directives to not share, may be internalised [37] with an atmosphere of secrecy and limits to open communication about HIV affecting the young person at home, in their community and in the clinic [38,39]. The subjective difficulty of sharing one's HIV status in young people with PAH, particularly in relationships, has been frequently reported, with a fear of rejection, a lack of confidence about sharing (disclosure self-efficacy), and fear of secondary disclosure from the recipient to others cited as barriers to sharing [37,[40][41][42]. ...
Article
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Background Young adults with perinatally acquired HIV (PAH) face several challenges, including adhering to antiretroviral therapy (ART), managing the risk of onward HIV transmission and maintaining positive well-being. Sharing one’s HIV status with others (onward HIV disclosure) may assist with these challenges by facilitating emotional and practical support. Rates of HIV status sharing are, however, low in this population. There are no existing interventions focused on sharing one’s HIV status for young adults living with PAH. The HEADS-UP study is designed to develop and test the feasibility of an intervention to help the sharing of HIV status for young adults with PAH. Methods The study is a 30-month multi-site randomised feasibility study across both a high-income/low-HIV prevalence country (UK) and a low-income/high-HIV prevalence country (Uganda). Phase 1 (12 months) will involve developing the intervention using qualitative interviews with 20 young people living with PAH (ten in the UK—18 to 29 years; ten in Uganda—18 to 25 years), 20 of their social network (friends, family, sexual partners as defined by the young person; ten in the UK, ten in Uganda) and ten professionals with experience working with young adults with PAH (five in the UK, five in Uganda). Phase 2 (18 months) involves conducting a randomised feasibility parallel group trial of the intervention alongside current standard of care condition in each country (main study) with 18- to 25-year olds with PAH. A sample size of 94 participants per condition (intervention or standard of care; 188 participants in total: 47 in each condition in each country) with data at both the baseline and 6-month follow-up time points, across UK and Ugandan sites will be recruited. Participants in the intervention condition will also complete measures immediately post-intervention. Face-to-face interviews will be conducted with ten participants in both countries immediately post-intervention and at 6-month follow-up (sub-study). Discussion This study will be the first trial that we are aware of to address important gaps in understanding acceptable and feasible ways of delivering HIV status sharing support for young people living with PAH. Trial registration ISRCTN Registry, ISRCTN31852047 , Registered on 21 January, 2019. Study sponsor: Royal Holloway University of London. Sponsor contact: alicen.nickson@rhul.ac.uk. Date and version: April 2020. Protocol version 3.5.
... On the other findings, the deaths of patients with HIV were due to the diseases that are not related to immunodeficiency, such as cardiovascular disease and cancers that are not related to AIDS [31]. Nevertheless, the patients need positive inputs about their life expectancy [32]. So, they could be more optimistic and avoid worries about the risk of death [30]. ...
Article
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The research aims to explore about what patients with HIV-infection have in mind by consuming controlled antiretrovirals about their medication. This research placed in Care, Supportive and Treatment (CST) clinic on KRT Setjonegoro Regional Public Hospital, Wonosobo, Indonesia. The sampling of research used cross-sectional method through March-April 2019. We used an instrument adopted by an anonymous questionnaire. A total of 62 participants involved in this study. The result of research showed that although the patients consistently undergoing antiretrovirals therapy, there is also a bunch of miserable risks and threats on their minds. The awareness of undergoing therapy does not directly reflect a complete understanding of antiretrovirals.
... Such a script invariably involves perfect adherence to ART, with no margin for error envisaged or discussed. Our study suggests that "ART talk" is the only framework available for many young people to understand their own condition (see also Kajubi et al. 2014, Newman et al. 2016. ...
Article
Global health priorities are being set to address questions on adherence to HIV antiretroviral therapy in adolescence. Few studies have explored young people's perspectives on the complex host of social and relational challenges they face in dealing with their treatment in secret and their condition in silence. In redressing this, we present findings from a longitudinal qualitative study with young people living with HIV in the UK, Ireland, US and Uganda, embedded within the BREATHER international clinical trial. Drawing from Goffman's notion of stigma, we analyse relational dynamics in HIV clinics, as rare spaces where HIV is 'known', and how young people's relationships may be threatened by non-adherence to treatment. Young people's reflections on and strategies for maintaining their reputation as patients raise questions about particular forms of medicalization of HIV and the moralization of treatment adherence that affect them, and how these may restrict opportunities for care across the epidemic.
... Young people infected through sexual intercourse had similar challenges telling their parents. Indeed, norms of respectful intergenerational interaction, particularly discretion in matters involving sex, have mitigated HIV disclosure within families (Kajubi et al. 2014;Mburu et al. 2014). For both groups, disclosing HIV was associated with the fear of blame, stigma, and discrimination, as well as shame and guilt related to perceived sexual misconduct. ...
Article
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Research delineates two epidemiological categories among HIV-positive adolescents: those who contract the virus sexually and those who inherit it as infants. In this article, I am interested in how tacit inferences about adolescents’ mode of infection contribute to their experiences of HIV-related blame, and their ability to achieve care, in their intimate, everyday settings. The analysis arises from ethnographic research with 23 HIV-positive adolescents living in South Africa's Eastern Cape. From these, I draw particularly on the narratives of four HIV-positive teenage girls and their HIV-positive mothers. The article explores the social stakes entailed in ascriptions of adolescents’ ‘mode of infection’, particularly in terms of how blame was allocated between mothers and daughters. It further considers how these families have sought to negotiate repudiation, and thereby sustain intergenerational care. The article furthers limited research on the life projects and dilemmas of this HIV-positive adolescent cohort. This article is protected by copyright. All rights reserved
... However, we identify commonalities of children's communication practices in relation to their caregivers with what has been documented by disclosure studies in similar resource-limited settings [13,17] and other studies on health communication in Uganda and Kenya [50,53]. Communication with children in these settings often is directive, rather than participatory fashion, with few opportunities for questioning, discussion, and joint decision making made available to children [17,66]. These studies suggest that the findings may be applicable beyond the study area. ...
Article
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Introduction: HIV treatment and disclosure guidelines emphasize the importance of communicating diagnosis and treatment to infected children in ways that are appropriate to children's developmental stage and age. Minimal attention, however, has been given to communication challenges confronted by HIV-infected children and their caregivers. This study examined the tensions between children and their caregivers arising from differing perspectives regarding when and what to communicate about antiretroviral therapy (ART). Methods: This qualitative study was conducted between November 2011 and December 2012 and involved 29 HIV-infected children aged 8-17 years on ART and their caregivers. Data were collected through observations and in-depth interviews, which took place in homes, treatment centres and post-test clubs. Children and caregivers were sampled from among the 394 HIV-infected children and (their) 393 caregivers who participated in the cross-sectional survey that preceded the qualitative study. ATLAS.ti. Version 7 was used in the management of the qualitative data and in the coding of the emerging themes. The data were then analyzed using content thematic analysis. Results: While the children felt that they were mature enough to know what they were suffering and what the medications were for, the caregivers wanted to delay discussions relating to the children's HIV diagnosis and medication until they felt that the children were mature enough to deal with the information and keep it a secret and this caused a lot of tension. The children employed different tactics including refusing to take the medicines, to find out what they were suffering from and what the medications were for. Children also had their own ideas about when, where and with whom to discuss their HIV condition, ideas that did not necessarily coincide with those of their caregivers, resulting in tensions. Conclusions: Guidelines should take into consideration differing perceptions of maturity when recommending ages at which caregivers should communicate with their children about diagnosis and ART. Health care providers should also encourage caregivers to recognize and respect children's efforts to learn about and manage their condition. Children's questions and expressions of feelings should be treated as openings for communication on these issues.
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Introduction: Adolescents living with HIV (ALHIV) on antiretroviral therapy (ART) have specific health needs that can be challenging to deliver. Sub-Saharan Africa (SSA) is home to 84% of the global population of ALHIV, of whom about 59% receive ART. Several studies in SSA have demonstrated health service gaps due to lack of synchronized healthcare for ALHIV receiving ART. We conducted a systematic review of health-related needs among ALHIV on ART in SSA to inform decisions and policies on care. Methods: We searched MEDLINE, Web of Science, EMBASE, PsycINFO, Cochrane library and grey literature for studies reporting health-related needs among ALHIV receiving ART in SSA, between January 2003 and May 2020. Results and discussion: Of the 2333 potentially eligible articles identified, 32 were eligible. Eligible studies were published between 2008 and 2019, in 11 countries: Zambia (7), Uganda (6), Tanzania (4), South Africa (4), Kenya (3), Ghana (2), Zimbabwe (2), Rwanda (1), Malawi (1), Botswana (1) and Democratic Republic of Congo (1). Seven categories of health needs among ALHIV were identified. In descending order of occurrence, these were: psychosocial needs (stigma reduction, disclosure and privacy support, and difficulty accepting diagnosis); dependency of care (need for family and provider support, and desire for autonomy); self-management needs (desire for better coping strategies, medication adherence support and reduced ART side effects); non-responsive health services (non-adolescent friendly facility services and non-compatible school system); need for food, financial and material support; inadequate information about HIV (desire for more knowledge to fight misinformation and misconception); and developmental and growth needs (desire to experience sex, parenthood and love). Ecological analysis identified different priority needs between ALHIV, their caregivers and healthcare providers, including psychosocial needs, financial challenges and non-responsive health services, respectively. Conclusions: To respond effectively to the health needs of ALHIV and improve ART adherence, interventions should focus on stigma reduction, disclosure challenges and innovative coping mechanisms for ART. Interventions that address the health needs of ALHIV from the perspective of carers and providers, such as financial support schemes and adolescent-friendly healthcare strategies, should supplement efforts to improve adolescent ART adherence outcomes.
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This methodological article reflects on the contribution audio diaries can make to accessing important, and commonly silenced, dimensions of the lived experience of growing up with HIV and their acceptability to children. Audio diaries were used by 12 young people, aged 11 to 13 years, as part of a longitudinal qualitative study embedded within the Anti-Retroviral Research for Watoto (ARROW) clinical trial. The method provided an alternative means for young people to express detailed reflections on their day-to-day encounters, as well as ordinarily silenced topics, including hidden and suppressed emotions regarding the circumstance surrounding their perinatal infection. Although the audio diary has great potential as method, its efficacy rests on young people’s understanding of how to use it. There are ethical challenges around maintaining confidentiality while participants are in possession of the diaries and provision of appropriate support. The technology used in the study was in many ways cumbersome compared with opportunities increasingly available.
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While disclosure of HIV sero-status is encouraged in the management of the HIV and AIDS epidemic, it remains a challenge, especially among family members. This article examines the moral dilemmas and pragmatic incentives surrounding disclosure of HIV status in contemporary Uganda. Our findings are based on 12 in-depth interviews, 2 focus-group discussions, 6 key informant interviews with AIDS activists, and open-ended responses derived from 148 HIV-positive persons in a quantitative survey. The study was conducted in 2008-2009 in Kampala, Mpigi, and Soroti districts in Uganda. We found both parents and adult children facing dilemmas in disclosure, whether it was parents revealing their own HIV status to their children or the status of their perinatally infected children, or young people infected through sexual intercourse telling their parents. For both groups, there is fear of blame, stigma, discrimination, and shame and guilt related to unsafe sex, while young people also fear loss of privileges. On the other hand, there are practical imperatives for disclosure in terms of gaining access to care, treatment, and material resources. Faced with these dilemmas, HIV-positive people and their families require professional counselling to help them work through the emotional challenges encountered and identify mechanisms of support and coping.
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This article analyses the central themes running through the collection of papers in this special issue of Childhood, which were all given as papers at the XVI Durban World Congress of Sociology, 23—29 July 2006. These themes encompass the ways in which global processes of social change combining modernity with tradition have become important for both the perception of childhood and for childrens real lives. They also include the ways in which those processes intertwined with social inequalities — of gender, generation and socioeconomic status — among children and between children and other age groups. The article goes on to provide an outline of the ways in which more general theoretical concerns in the sociology of childhood globally are related to local situations, to a variety of practical settings, to the conceptual concerns in different sociological fields and other social science disciplines in South Africa, Ethiopia, Taiwan, Germany, Sweden, and Italy.
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More than 30 years after the first discovery of the deadly HIV virus, and in the wake of increased knowledge of transmission, treatment and behavioral intervention development, parents are still faced with the difficult task of whether, when and how to inform their child about her or his HIV status. Except for some general ethical considerations, there are no national or international guidelines available for handling HIV status disclosure to a child by parents and health professionals. Most studies on disclosure address the problem of stigma and the barriers to disclosure of HIV-positive status by adults to their sexual partners, caretakers, families and communities, but very few studies focus on disclosure to HIV-positive children. The majority of the studies that address disclosure to children limit themselves to stipulating reasons for barriers to such disclosure instead of the skills and knowledge necessary for effective disclosure to a child. Increasing availability of therapy for HIV across the world presses the issue of disclosure to the child. Even so, disclosure for children who are HIV-positive due to vertical transmission continues to be very difficult. There is a lack of interventions that consider guidelines for healthcare professionals, parents or persons involved with taking care of HIV-positive children. These interventions should be designed in an understanding manner towards the culture where they might be implemented and be as appropriate in the view of integrating different family structures and the child’s development.
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Most studies on HIV serostatus disclosure and adolescents focus on whether, how and when to disclose to adolescents their HIV diagnosis. Fewer studies have examined HIV serostatus disclosure by adolescents who know they are infected with HIV. This study presents qualitative data examining HIV serostatus and treatment disclosure practices and concerns of young people living with HIV in Uganda and the extent to which they are satisfied with current norms around HIV serostatus and treatment disclosure. We conducted two focus groups and interviewed 20 HIV-infected young people aged 15-23 receiving HIV care and treatment at the Transition Clinic in Kampala. Respondents perceived disclosure as a relationship encompassing both communication and self-conduct. Adolescents employed unique strategies to disclose their HIV status, notably joking to "test the waters" and emotionally prepare the other person before later disclosing in a more serious manner. Findings reinforce the idea that HIV disclosure is a process, not a one-time event. Interviewees anticipated both positive and negative outcomes of disclosure, including financial and emotional support, stigma, discrimination and rejection. They described a sense of violation of their autonomy when confidentiality was breached by third party disclosure, and also expressed fear of emotional distress for their loved ones. Although adolescents yearned to be in control of information about their HIV status and treatment, they have little space to call their own, and privacy is often compromised, especially because in traditional African settings, young people are considered to be dependents under the full responsibility of caregivers. Further exploration of disclosure outcomes and strategies specific to adolescents can help better tailor interventions towards youth. Antiretroviral therapy programmes should consider counselling for caretakers to appreciate and respect the privacy and disclosure concerns of their HIV-infected children.
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HIV-infected children in developing countries are living longer lives as they gain access to antiretroviral treatment programs. As they grow older, their parents/guardians are faced with the difficult decision of if, when, and how to inform their child of his/her HIV status. Both negative and positive social, psychological, and behavioral impacts of disclosure to children have been reported, including improved adherence to medication regimens. Understanding the disclosure process from the perspective of HIV positive children, therefore, is critical to developing these interventions. Through children's experiences we can learn about what works well, what needs to be strengthened, and what is missing in current disclosure practices. We conducted in-depth interviews with eight caregiver-child dyads in Kinshasa, Democratic Republic of the Congo. The children were in a comprehensive HIV pediatric care and treatment program and had already been told their HIV diagnosis. For the analysis we placed particular emphasis on children's reports of communication with their caregivers and health care providers about their illness. Patterns emerged of limited communication between children and their caregivers as well as their providers, before, during, and after disclosure. From the perspective of children in this study, disclosure was largely a discrete event rather than a process. Sociocultural contexts surrounding HIV/AIDS, as well as health status, variations in parent-child communication and the relationships between health providers and children under their care, should inform psychosocial interventions delivered alongside treatment programs.
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Advocating active child participation in medical encounters is in line with demands for shared decisionmaking and informed consent. The sparse literature on doctor–child communication, however, conceptualizes children as passive participants and depicts the stereotype of a ‘joking’ relationship, which is limited mainly to affective behaviour. This descriptive study explores the nature of communication in the doctor–parent–child triad at the general practitioner’s surgery. Video-taped observations of 106 medical interviews were analysed in terms of affective and instrumental behaviour. An adjusted version of the Roter Interaction Analysis System (RIAS) was used to analyse the doctor–parent–child triad. The videos, taken over a period of almost twenty years, made it possible to look for the presence of effects over time. The results show that the stereotype of doctor–child interaction as a joking relationship does not hold true. In fact, besides affective behaviour, there was more exchange of instrumental behaviour. The age of the child was positively related to child participation. Time appears to have had a rather limited effect on the child’s participation. Whereas GPs accommodated their behaviour to the child’s age by displaying more instrumental behaviour towards older children, the nature of parental behaviour appeared to be almost constant. The results are discussed in terms of the relevance for shared decision-making in medical consultations regarding children, and recommendations are given for medical practice and health education.
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Studies on doctor-patient communication focus predominantly on dyadic interactions between adults; even when the patient is a child, the research focus is usually on doctor-parent interaction. The aim of this review study is to evaluate the state of the art of research into doctor-parent-child communication, and to explore the specific role of the child. Researchers have focused on diverse aspects of the communication in this triad, and, as a result, knowledge gained from studies in this area is poorly integrated. Most of the studies have ignored the implications of a child's presence in medical encounters. Although all studies claim to examine the interaction in the doctor-parent-child triad, most research methodologies used are based on dyads. Our claim. however, is that, because the interactional dynamics of a triad differ fundamentally from those of a dyad, triadic analyses are a prerequisite for a full account of the communication between doctor, parent and child. Suggestions are formulated for an adequate research frame regarding triads.
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Whether, how, and when children's HIV/AIDS diagnosis needs to be disclosed to them has received growing attention. This paper describes and conceptualizes how communication about HIV/AIDS influences disease knowledge and psychosocial development in a group of children and adolescents living with perinatally acquired HIV infection in an AIDS institution in São Paulo, Brazil. Data consist of the lived experience of 36 children ages 1 to 15 and was gathered through ethnographic research methodologies: participant observation and semistructured informal interviews. Results show that AIDS diagnosis is not disclosed to children, who experience a growing confusion about the interconnected meanings of sickness, medications, living at a house/institution, and having AIDS. Children younger than 6 learn to accept medication taking and to silence illness-related questions. Seven to 9-year olds perceive that the word AIDS and/or being sick are considered negative attributes, but are confused about how these relate to their lives. Preadolescents' growing awareness of the relationship between their lives and negative social values associated with AIDS produces shame and anger. Adolescents exhibit a poor understanding of the implications of HIV/AIDS for their lives and cynicism toward AIDS care, their future, and information about risks to their health. In conclusion, lack of communication about HIV/AIDS creates a context of confusion and mistrust, is detrimental to psychosocial development and coping, compromises disease knowledge, and increases vulnerability to risk behavior. Providing developmentally appropriate information about HIV/AIDS that matches children's illness experiences at all ages would eliminate the need for disclosure and reduce children's emotional distress.
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Pediatric adherence to daily drug regimens has not been widely assessed in Africa where majority of HIV infected children live. Using in-depth interviews of 42 HIV-infected children taking ART and/or cotrimoxazole prophylaxis, and 42 primary caregivers, at a comprehensive HIV/AIDS clinic in Uganda, we evaluated their adherence experiences for purposes of program improvement. Daily drug regimens provided by the pediatric clinic included cotrimoxazole prophylaxis as well as ART and cotrimoxazole combined. Complete disclosure of HIV status by caregivers to children and strong parental relationships were related to good adherence. Structural factors including poverty and stigma were barriers to adherence even for children who had had complete disclosure and a supportive relationship with a parent. To ensure adherence to life-extending medications, our findings underscore the need for providers to support caregivers to disclose, provide on-going support and maintain open communication with HIV-infected children taking cotrimoxazole prophylaxis and ART.
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Children aged 6-12 years are usually seen in primary care with an adult carer. It is a government and professional priority for doctors to try and involve these children in their medical consultations. To ascertain the evidence available on the amount and type of involvement that children in the 6-12 year age group have in their primary care consultations when the consultation was held with a child, a GP, and an adult. Literature review. Data sources included MEDLINE, CINAHL, EMBASE, and ERIC, The Cochrane library, PsychINFO, Web of Science and Wilson's Social Science abstracts, hand searching for references, and contact with authors. Twenty-one studies were selected for inclusion in the study. Children were found to have little quantitative involvement in their own consultations. They may take part during information gathering but are unlikely to participate in the treatment planning and discussion parts of the consultation. Children in the 6-12 year age group have little meaningful involvement in their consultations.
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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. 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. 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. 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.
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Recent legislation in the Netherlands requires that children should play a part in decision making regarding their own health care. So far, however, little attention has been given to the child’s participation in medical interviews. In order to get a grip on aspects of asymmetry and control in doctor–parent–child communication, the present study explores the turntaking patterns in this triad at the general practitioner’s surgery, and makes a comparison over the years. Videotaped observations of 106 medical interviews taken over a period of almost 20 years have been analyzed by means of the Turn Allocation System. The results show that the child’s control in the medical consultation is rather limited, though, over the years, the child participates more actively. The child’s conversational contribution appears to be strongly related to the age of the child. An important finding is the difference in the way GP and parent accommodate their turntaking patterns to the child; parental control appears to be constant over the years, and is not related to the age of the child, whereas the GP is considering the child’s age. The results are discussed in terms of implications for medical practice and health education.
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In this article, I explore the lessons that the anthropological debates of the 1980s about writing culture might have for contemporary childhood research within anthropology and the social sciences more generally. I argue that the current rhetoric about “giving voice to children,” commonplace both inside and outside the academy, poses a threat to the future of childhood research because it masks a number of important conceptual and epistemological problems. In particular, these relate to questions of representation, issues of authenticity, the diversity of children's experiences, and children's participation in research, all of which need to be addressed by anthropologists in their own research practices with children. Unless anthropologists do so, childhood research risks becoming marginalized once more and will fail to provide an arena within which children are seen as social actors who can provide a unique perspective on the social world about matters that concern them as children.
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Human 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. A 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. Of 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. The 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.
Article
Previous studies on doctor-parent-child communication at the general practitioner's surgery showed that the GP and the parent differ fundamentally in the way they enable or constrain child participation. The question how to explain these differences is at the core of the present study. The aim is to describe how the three participants display their orientation to their institutional roles and identities; how they collaboratively co-construct the course of action; and how these discursive constructions structure the ongoing interaction. A qualitative analysis of 106 videos shows that although GP and parent initially show incongruent orientations toward child participation, in the further course of the encounter all three participants jointly establish a situation in which child participation appears to be rather an exception. It is concluded that parental speaking for the child is, in a way, institutionally co-constructed; parents take their responsibility, which is hardly ever questioned by children, and GPs ratify this behaviour by refraining from meta-communicative comments and by aligning with the parent in the course of the interaction. The results are discussed in terms of enabling child participation and implications for medical practice.
Article
Adult participants play a pivotal role in doctor-parent-child interactions at the general practitioner's (GP's) surgery. The child's opportunities to participate are rather limited and parental speaking for the child is, in a way, institutionally co-constructed. This study aimed at further characterizing the relationships within this triad by developing a typology of doctor-parent-child interactions, which classified adult behavior in terms of supporting versus non-supporting child participation. The child's participation was described in terms of display of involvement and turning for support. Analyses of 105 videos show that in most consultations, both GP and parent displayed non-supportive behavior. Despite the GPs' initial efforts to involve the child in the interaction, 90% of the consultations ended up in a non-participatory way. During this last segment of diagnosis and treatment information, the child's voice was hardly heard, as reflected in the minimal involvement displayed and the absence of turning to the parent for support. It is concluded that the bi-directional perspective chosen in this analysis allowed for a better understanding of the underlying mechanisms leading to the stereotypical picture in both literature and actual practice of triadic medical interactions being dominated by both adult participants. The low degree of child participation should not solely be seen as a consequence of adult behavior, but rather as a co-construction of all three participants. The results are discussed from a pedagogical perspective, and implications for medical practice are formulated.
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The American Academy of Pediatrics strongly encourages the disclosure of HIV status to school-age children and further recommends that adolescents know their HIV status. Limited information exists on the impact of disclosure. We designed and implemented a disclosure model hypothesized to be associated with healthy psychological adjustment and improved medication adherence. We report the model's design and implementation and results of a quasi-experimental study of the disclosure's effects on health care professionals (n = 16), caregivers (n = 39), and HIV-infected youth (n = 40) in Puerto Rico. Information was collected from youth, caregivers, and professionals by semistructured interviews and questionnaires. Most youth (70%) had feelings of normalcy 6 months post-disclosure, and most also improved their adherence to therapy after disclosure as reported by both patients (58%) and caregivers (59%). Eighty-five percent of youth and 97% of caregivers considered disclosure a positive event for themselves and their families. Fewer health care professionals reported feelings of fear, discomfort, and insecurity after protocol participation.
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