Exploring the mechanism through which a child-friendly storybook addresses barriers to child-participation during HIV care in primary healthcare settings in KwaZulu-Natal, South Africa

Abstract

Background Healthcare workers (HCWs) in South Africa widely use job-aids as practical tools to enhance the provision of HIV services, thereby improving patient-provider interactions during the care process. Job-aids are visual support materials that provide appropriate information using graphics and words in a simple and yet effective manner. We explored the mechanism through the KidzAlive Talk tool storybook (Talk tool), a child-centred job-aid for HCWs that facilitates child-participation during HIV consultations in primary healthcare (PHC) clinics implementing the KidzAlive model. Methods The study was conducted in PHC clinics across four districts; namely: uMkhanyakude, Zululand, uMgungundlovu, and eThekwini in KwaZulu-Natal (KZN), South Africa. We conducted in-depth interviews with children (n = 30), their primary caregivers (PCGs) (n = 30), and KidzAlive trained and mentored HCWs (n = 20). Data were collected in both English and isiZulu languages through user-specific, structured in-depth interviews. All the interviews were audio-recorded (with participants’ assent and consent, respectively). Data were transcribed verbatim, prior to translating the isiZulu transcripts to English. Translations were done by a member of the research team competent in both languages. Electronic data were imported to NVivo 10 for analysis and subsequently analysed using a thematic analysis method followed by a constant comparative and modified grounded theory analysis method. Results The findings identified the following barriers to child-participation: Primary caregiver limiting the child’s involvement due to fear of traumatising them; HCWs’ limited knowledge and skills to deliver child-centred HIV care; childhood developmental stage-related limitations and healthcare institutional paternalism. The Talk tool addresses the above barriers by using simple language and terminology to cater for children at various stages of development; alleviating HCWs’ and PCGs’ fear of possible psychological harm to the child; using storytelling and colourful cartoon illustrations for child edutainment; Being versatile by allowing for multiple utility and tackling institutional paternalism that limit child-involvement in the process of care. Conclusions This study provided evidence on how the Talk tool storybook addresses barriers to child-participation in the HIV care process. The evidence generated from this study is compelling enough to recommend the scale-up of this innovation in low-resource settings.

The right of children and adolescents living with HIV to participate in health care

“…2 In this way, the right to participation is also considered a fundamental HR for children and adolescents living with HIV. 4,5 However, according to research data, respect for the right to participate in health is not a reality in many countries. [6][7][8] Children and adolescents are disregarded in planning and decisions regarding their health care, even when they express a desire to be involved.…”

“…This situation is a reflection of a health care model centered on disease control, as well as on the norms of the Brazilian legal system. 5 However, recognizing the children's and adolescents' right to participate in health care, according to their ability and interest in doing so, gives them the right to express their points of view. Consequently, it promotes self-care and quality of life.…”

Direito à participação no cuidado em saúde de crianças e adolescentes que vivem com HIV

“…2 Desta forma, o direito à participação também é considerado como um DH fundamental para crianças e adolescentes que vivem com HIV. 4,5 No entanto, o respeito ao direito à participação em saúde não é uma realidade em muitos países, conforme dados de pesquisas. [6][7][8] As crianças e os adolescentes são desconsiderados no planejamento e nas decisões relativas aos seus cuidados em saúde, mesmo quando expressam um desejo de envolvimento.…”

“…Tal situação é reflexo de um modelo de cuidado em saúde centrado no controle da doença, assim como nas normas do ordenamento brasileiro. 5 No entanto, o reconhecimento do direito à participação de crianças e adolescentes nos cuidados em saúde, conforme a sua capacidade e o seu interesse em fazê-lo, oportuniza o direito de expressarem seus pontos de vista. Consequentemente, propicia o autocuidado e a qualidade de vida.…”

Children and adolescents living with HIV: participatory health care proposal

“…However, in the context of children and adolescents living with HIV, there are benefits when they participate in their health care, such as in the exchange of experiences and opinions both within the family or between friends and with health professionals (11)(12)(13) . It is believed that this is a way to reduce the stigma and discrimination that living with HIV represents, even nowadays, in addition to raising awareness and preventing new infections (2,(14)(15)(16) .…”