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Background: The Sustainable Development Goals (SDGs) commit to strengthening collaborations between governments and civil society. Adolescents are among the key target populations for global development initiatives, but research studies and programmes rarely include their direct perspectives on how to promote health and wellbeing. This article explores how both the methods and the findings of participatory research provide insights into adolescents’ aspirations across the domains of health and social development. It investigates how adolescents conceive of health and social services as interconnected, and how this reflects the multisectoral objectives of the SDGs. Methods: This research was conducted within a longitudinal, mixed-methods study of HIV-positive adolescents (n = 80 qualitative participants, n = 1060 quantitative interviews). Between November 2013 and February 2014, a participatory exercise – the “dream clinic” – was piloted with 25 adolescents in South Africa’s Eastern Cape. Key themes were identified based on the insights shared by participants, and through visual and thematic analysis. These findings were explored through a second participatory exercise, “Yummy or crummy? You are the Mzantsi Wakho masterchef !,” conducted in January 2016. Findings are described in relation to emerging quantitative results. Results: Mixed methods explored associations between access to food, medicines, clean water and sanitation in HIV-positive adolescents’ aspirations for development. The exercises produced practicable recommendations for innovations in development, based on associations between healthcare, food security, clean water and sanitation, while illustrating the value of partnership and collaboration (the objective of SDG17). Findings capture strong interlinkages between SDGs 2, 3 and 6 – confirming the importance of specific SDGs for HIV-positive adolescents. Study results informed the objectives of South Africa’s National and Adolescent and Youth Health Policy (2017). Conclusions: Participatory research may be used to leverage the perspectives and experiences of adolescents. The methods described here provide potential for co-design and implementation of developmental initiatives to fulfil the ambitious mandate of the SDGs. They may also create new opportunities to strengthen the engagement of adolescents in policy and programming.
This article focuses principally on a participatory research exercise entitled the “dream clinic”, triangulating findings with a second participatory exercise, “Yummy or crummy? You are the Mzantsi Wakho masterchef!.” We combine results from these exercises with wider themes and emerging findings from a mixed methods, cohort study about youth health in South Africa. The study name, “Mzantsi Wakho” – meaning “Your South Africa,” captures its intention to engage youth in conceiving and relating their own goals for health and social development. Mzantsi Wakho is a partnership of qualitative and quantitative researchers. The study is advised by the South African Departments of Basic Education, Health, Social Development and the Human Sciences Research Council, bilateral agencies UNICEF and UNAIDS, and non‐governmental organisations, including Pediatric‐Adolescent Treatment for Africa (PATA). These partnerships have informed the study’s focus on interconnections between the domains of health and social development for adolescents. Starting in 2013, the study has combined multiple qualitative methods, including in‐depth interviews, observations and focus groups, to investigate the healthcare practices and experiences of adolescents and young people 17, 18, 19, 20. From 2014 to 2015, the study established a quantitative cohort of 1060 HIV‐positive 10 to 19 year‐olds. A structured questionnaire captures the health and social factors associated with medicines‐taking and sexual health 8, 9. The sample was 55% female, and had a mean age of 13.8. 97% of participants spoke isiXhosa as their first language. About 19% lived in informal housing, and 21% were based in rural areas. Nearly half were maternal orphans (44%) and 30% paternal orphans. All HIV‐positive participants had been initiated onto ART, with an average of 5.9 years on treatment. 75% knew their HIV‐positive status 21, defined as having been disclosed to by an adult caregiver or healthcare worker, and by adolescent self‐reported knowledge of HIV‐positive status and understanding ART as medicine to treat HIV 22, 23. Findings from both the qualitative and quantitative components of the study informed the adaptation and integration of research tools with multiple sources of data analysed by inter‐disciplinary investigators 22, 23, 24, 25. Due to the legal and ethical challenges of working with young people, studies about health often use adults as “proxies” for adolescent experiences. Mzantsi Wakho’s approach is different: positioning adolescents as the primary experts on their own health behaviours, conducting research both within and beyond clinical contexts, in homes and in leisure spaces, and seeking new ways of documenting adolescents’ experiences and perspectives. Ethical approval for this study was provided by Research Ethics Committees at the Universities of Oxford (SSD/CUREC2/12‐21) and Cape Town (CSSR 2013/4), Eastern Cape Departments of Health and Basic Education, and ethical review boards of participating hospitals. The study follows a deliberative approach to ethical permissions, seeking ongoing guidance to ensure consent and protect confidentiality during primary research, analysis, and dissemination. The “dream clinic” used visual media to capture and convey adolescents’ aspirations for health and social services. The exercise drew on the utility of participatory, socio‐spatial mapping exercises as research tools 14, 26. The exercise was piloted in a workshop held in the Eastern Cape, in November 2013, with 9 adolescents from a rural area. It was repeated with 16 adolescents from a peri‐urban area within the same health district in February 2014. Adolescent participants of mixed gender, ranging in age from 10 to 19, were recruited from local community‐based organizations that provided HIV care and treatment. Adolescents in the first workshop knew their HIV‐status, were openly disclosed, and knew one another’s status as a consequence of being in the same support group. The second workshop combined openly‐disclosed, partially‐disclosed and undisclosed adolescents, and no specific references were made to HIV or to ART. For adolescents younger than 18‐years, voluntary informed consent for participation was obtained from caregivers, alongside voluntary, informed assent from adolescents. The “dream clinic” exercise used a series of open‐ended prompts to facilitate adolescents in designing and drawing their ideal health facilities. Adolescents were invited to imagine the location and structure of the clinic, and to recreate its surroundings and interior. The exercise was conducted in three languages – isiXhosa, English, and Afrikaans. Facilitators gave prompts principally in English and isiXhosa, with additional explanations given to individuals and groups in their primary languages. All facilitators were trained on how to engage adolescent participants, including how to avoid dominating or directing participation. Participants chose to work alone, or within groups of two to five. Groups included a dispersion of participants according to age and gender, and produced a total of fourteen “dream clinic” illustrations (10 individual drawings in the first workshop, and four group drawings in the second). At the end of the exercise, each drawing was presented to the broader group, with participants explaining its particular features and significance. Researchers made notes of participants’ responses and interpolations. One of the challenges of this exercise was that many adolescents began by drawing their clinics as they existed. Distinguishing reality from aspiration in analysing the drawings could therefore be difficult. Thematic notes helped to convey participants’ intentions and to differentiate between what they hoped for, and what they experienced directly. Following Martin‐Hilber et al. 27, notes were later collated and compared, and key themes identified based on the insights shared by participants, and through visual and discursive analyses of the drawings. Themes identified through the “dream clinics” were explored further with participants through participatory research on the experiential components of medicines‐taking, including through the “Yummy or crummy” exercise described below. From November 2015 to January 2016, we designed a participatory research tool to explore the experiential components of medicines‐taking. Named “Yummy or crummy? You are the Mzantsi Wakho masterchef !,” the exercise combined role‐playing with the preference‐ranking features of social media forums. Drawing on the rubric for participatory research developed by Skovdal and Cornish 13, it merged “linkages and relationship tools,” “experiential tools,” and “prioritization and quantification tools.” Through incorporating visual and performative components, the exercise aimed to provide participants with new ways to relate the multisensory experiences of medicines‐taking. Feedback forms used various techniques for assessing medicines‐preferences among young patients 28, including emoticons from social media applications. The content of forms was transcribed, translated, and coded, with key themes identified collectively by researchers who designed and facilitated the exercise. It was piloted with a group of adolescents and young adults (n = 17, male 7, female 9), part of the Teen Advisory Group (TAG), in January 2016. TAG was established within the Young Carers study in 2008, and participants played an advisory role in the Mzantsi Wakho study, taking part in annual workshops from 2012. “Yummy or crummy?” findings are used here to triangulate “dream clinic” findings, with a focus on the intersection of health programming with sanitation and social development from the perspectives of HIV‐positive adolescents.
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