“Experiences with disclosure of HIV-positive status to the infected child”: Perspectives of healthcare providers in Dar es Salaam, Tanzania

Abstract

BackgroundThe specific age to which an HIV infected child can be disclosed to is stipulated to begin between ages 4 and 6 years. It has also been documented that before disclosure of HIV positive status to the infected child. Health care providers should consider children’s cognitive-developmental ability. However, observation and situation analysis show that, health care providers still feel uncomfortable disclosing the HIV positive status to the infected child. The aim of the study was to explore healthcare providers’ experiences in disclosure of HIV-positive status to the infected child.MethodsA qualitative study involving 20 health care providers who attend HIV-positive children was conducted in September, 2014 in Dar es Salaam, Tanzania. Participants were selected from ten HIV care and treatment clinics (CTC) by purposive sampling. An interview guide, translated into participants’ national language (Kiswahili) was used during in-depth interviews. Sampling followed the principle of data saturation. The interviews focused on perspectives of health-care providers regarding their experience with paediatric HIV disclosure. Data from in-depth interviews were transcribed into text; data analysis followed qualitative content analysis.ResultsThe results show how complex the process of disclosure to children living with HIV can be to healthcare providers. Confusion was noted among healthcare providers about their role and responsibility in the process of disclosing to the HIV infected child. This was reported to be largely due to unclear guidelines and lack of standardized training in paediatric HIV disclosure. Furthermore, healthcare providers were concerned about parental hesitancy to disclose early to the child due to lack of disclosure skills and fear of stigma. In order to improve the disclosure process in HIV infected children, healthcare providers recommended further standardized training on paediatric HIV disclosure with more emphasis on practical skills and inclusion of disclosure content that is age appropriate for children with HIV.DiscussionThe disclosure process was found to be a complex process. Perspectives regarding disclosure in children infected with HIV varied among healthcare providers in terms of their role in the process, clear national guidelines and appropriate standardized training for paediatric disclosure. Consistent with other studies, healthcare providers reported difficulties during disclosure because parents /guardians largely fear blame, social stigma, child's negative emotional reaction when disclosed to and have concerns about the child being too young and immature to understand the HIV condition.ConclusionsIn order to prevent inconsistencies during the disclosure process, it is important to have in place clear guidelines and standardized paediatric HIV disclosure training for healthcare providers. This would help improve their skills in paediatric disclosure, leading to positive health outcomes for children infected with HIV.

Advocacy care on HIV disclosure to children

“…In this study, family members cited the importance of nurses, psychologists and physicians in nonsystematic consultations about the disclosure of HIV to the children. Such finding is dissonant with other studies (Qiao, Li, & Stanton, ; Sariah et al., ; Zanon, Paula, & Padoin, ) that recommend a multiprofessional approach as part of the disclosure process, conducted systematically and comprehensively.…”

New Directions for the Consideration of HIV: Heterogeneity and the Cognition of Time

“…We list some specific examples here: HIV‐infected children may suffer from compromised brain development, such as decreased gray matter volume as shown in MRI studies of vertically infected children (Yu et al., 2019); this brain development may in turn have been influenced by when the child was diagnosed (as an infant or at school‐going age), as well as when the child started treatment, and how appropriate early treatment was in terms of the effectiveness of the drug combination, and whether these were delivered in appropriate dosages (Nielsen‐Saines, 2019; Van de Wijer et al., 2019). HIV‐diagnosed children may also be highly affected by contextual variables such as when and how their HIV diagnosis was disclosed to them (Sariah et al., 2016), and whether their school environments promote stigma or encourage acceptance and support of children infected with HIV (MacCarthy et al., 2018). HIV orphaned children may be differentiated according to whether they are missing their mothers and/or their fathers, and this may influence who their primary caregiver is (e.g., father, grandmother, aunt, or uncle), and with which other relatives they may live (e.g., a step‐mother and step‐siblings, maternal or paternal relatives, cousins) (Beegle, Filmer, Stokes, & Tiererova, 2010); they may live with non‐relatives, such as in institutions, where they may experience less than optimal conditions, such as diminished care compared to caregivers’ biological children (Coneus, Mühlenweg, & Stichnoth, 2014) or short‐term attachments, as happen in orphanage settings (Richter & Norman, 2010).…”

“…HIV‐infected children may suffer from compromised brain development, such as decreased gray matter volume as shown in MRI studies of vertically infected children (Yu et al., 2019); this brain development may in turn have been influenced by when the child was diagnosed (as an infant or at school‐going age), as well as when the child started treatment, and how appropriate early treatment was in terms of the effectiveness of the drug combination, and whether these were delivered in appropriate dosages (Nielsen‐Saines, 2019; Van de Wijer et al., 2019). HIV‐diagnosed children may also be highly affected by contextual variables such as when and how their HIV diagnosis was disclosed to them (Sariah et al., 2016), and whether their school environments promote stigma or encourage acceptance and support of children infected with HIV (MacCarthy et al., 2018).…”

HIV Disclosure in Children in a Tertiary Hospital in Southern Nigeria–Child’s Perspective

“…Disclosure of HIV status to children is essential for disease management. Studies on disclosure in children have largely described it from the health provider's perspective [1][2][3] or caregivers perspective [4,5], but not much study has been done to characterize the actual impact of disclosure on the children as reported by the children themselves. For these children, learning about their HIV diagnosis is necessary to building trusting family relationships and an important step towards long-term disease management and transition from paediatric/ adolescent care into adult care settings.…”