The stuff that dreams are made of: HIV-positive adolescents’ aspirations for development: HIV-positive

Journal of the International AIDS Society, Volume 21, Year 2018

Interpretation

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.

AI Digest

Study Justification:

– The study aims to strengthen collaborations between governments and civil society in achieving the Sustainable Development Goals (SDGs).
– It seeks to include the direct perspectives of adolescents in promoting health and wellbeing, which is often overlooked in research studies and programs.
– The study explores how participatory research can provide insights into adolescents’ aspirations for health and social development.

Highlights:

– The study uses a longitudinal, mixed-methods approach to investigate the healthcare practices and experiences of HIV-positive adolescents in South Africa.
– It combines qualitative methods such as in-depth interviews, observations, and focus groups with quantitative interviews to capture a comprehensive understanding.
– The participatory exercises, “dream clinic” and “Yummy or crummy? You are the Mzantsi Wakho masterchef!,” provide practical recommendations for innovations in development.
– The findings highlight the interlinkages between access to food, medicines, clean water, sanitation, and the aspirations of HIV-positive adolescents.
– The study’s results have informed the objectives of South Africa’s National Adolescent and Youth Health Policy.

Recommendations:

– Foster partnerships and collaborations between government departments, bilateral agencies, and non-governmental organizations to address the interconnections between health and social development for adolescents.
– Develop innovative approaches to healthcare, food security, clean water, and sanitation that consider the specific needs and aspirations of HIV-positive adolescents.
– Strengthen the engagement of adolescents in policy and programming by leveraging their perspectives and experiences through participatory research.

Key Role Players:

– South African Departments of Basic Education, Health, Social Development
– Human Sciences Research Council
– UNICEF and UNAIDS
– Pediatric-Adolescent Treatment for Africa (PATA)
– Researchers and investigators from inter-disciplinary backgrounds

Cost Items for Planning Recommendations:

– Research personnel and staff
– Training and capacity building
– Data collection and analysis
– Workshop and meeting expenses
– Communication and dissemination activities
– Ethical review and compliance
– Monitoring and evaluation

Strength of Evidence

The strength of evidence for this abstract is 7 out of 10.
The evidence in the abstract is moderately strong. The study utilizes a mixed-methods approach, combining qualitative and quantitative research methods. It includes a longitudinal cohort study with a large sample size of HIV-positive adolescents. The participatory exercises, ‘dream clinic’ and ‘Yummy or crummy?’, provide insights into adolescents’ aspirations for health and social development. The findings are described in relation to the Sustainable Development Goals (SDGs) and have informed policy objectives. However, the abstract does not provide specific details about the statistical significance of the findings or the limitations of the study. To improve the strength of the evidence, the abstract could include more information about the statistical analysis and the potential biases in the study design.

Abstract

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.

Materials

N/A

Innovations

Based on the information provided, it is not clear what specific innovations were recommended to improve access to maternal health. The article focuses on participatory research exercises conducted with HIV-positive adolescents to explore their aspirations for health and social development. The exercises produced recommendations for innovations in development based on associations between healthcare, food security, clean water and sanitation. However, the specific innovations are not described in the provided text.

AI Innovations Description

The article discusses a participatory research exercise called the “dream clinic” and another exercise called “Yummy or crummy? You are the Mzantsi Wakho masterchef!” These exercises were conducted as part of a larger study on youth health in South Africa. The goal of the study was to engage adolescents in conceiving and relating their own goals for health and social development.

The “dream clinic” exercise involved inviting adolescents to design and draw their ideal health facilities. The exercise was conducted in three languages – isiXhosa, English, and Afrikaans. Participants worked alone or in groups and created a total of fourteen “dream clinic” illustrations. The drawings were analyzed to identify key themes and insights shared by the participants.

The “Yummy or crummy? You are the Mzantsi Wakho masterchef!” exercise aimed to explore the experiential components of medicines-taking. It combined role-playing with preference-ranking features and incorporated visual and performative components. Feedback forms were used to assess medicines-preferences among young patients.

The findings from both exercises provided insights into adolescents’ aspirations for health and social services. The exercises produced practical recommendations for innovations in development, particularly in the areas of healthcare, food security, clean water, and sanitation. These recommendations were based on the associations between these factors and the participants’ aspirations for development.

Overall, the participatory research methods described in the article offer potential for co-design and implementation of developmental initiatives to fulfill the ambitious mandate of the Sustainable Development Goals (SDGs). They also create opportunities to strengthen the engagement of adolescents in policy and programming.

AI Innovations Methodology

Based on the information provided, the article discusses the use of participatory research exercises to gather insights into adolescents’ aspirations for health and social development. The two exercises mentioned are the “dream clinic” and “Yummy or crummy? You are the Mzantsi Wakho masterchef!” These exercises involve engaging adolescents in designing and drawing their ideal health facilities and exploring the experiential components of medicines-taking.

To improve access to maternal health, here are some potential recommendations that can be considered:

1. Mobile clinics: Implementing mobile clinics that can reach remote areas and provide essential maternal health services such as prenatal care, vaccinations, and postnatal care.

2. Telemedicine: Utilizing telemedicine technologies to connect pregnant women with healthcare providers, allowing them to receive consultations and advice remotely, especially in areas with limited access to healthcare facilities.

3. Community health workers: Training and deploying community health workers who can provide maternal health education, support, and basic healthcare services to pregnant women in their communities.

4. Maternal health vouchers: Introducing voucher programs that provide pregnant women with financial assistance to access maternal health services, including prenatal care, delivery, and postnatal care.

5. Transportation support: Establishing transportation support systems to ensure that pregnant women can easily access healthcare facilities, especially in rural or underserved areas.

To simulate the impact of these recommendations on improving access to maternal health, a methodology could include the following steps:

1. Define the target population: Identify the specific population that will benefit from the recommendations, such as pregnant women in a particular region or community.

2. Collect baseline data: Gather data on the current state of maternal health access in the target population, including indicators such as the number of prenatal visits, facility-based deliveries, and postnatal care utilization.

3. Model the interventions: Use mathematical modeling or simulation techniques to estimate the potential impact of each recommendation on improving access to maternal health. This could involve estimating the number of additional pregnant women who would receive care, the reduction in travel time to healthcare facilities, or the increase in knowledge and awareness about maternal health.

4. Incorporate contextual factors: Consider the specific context in which the interventions will be implemented, such as the availability of healthcare infrastructure, cultural beliefs, and socioeconomic factors. Adjust the simulation model accordingly to reflect these contextual factors.

5. Analyze the results: Evaluate the simulated impact of the recommendations on improving access to maternal health. This could involve comparing the baseline data with the projected outcomes of the interventions, such as the increase in prenatal care coverage or the reduction in maternal mortality rates.

6. Refine and iterate: Based on the analysis of the simulation results, refine the recommendations and the simulation model if necessary. Iterate the process to further optimize the interventions and improve the accuracy of the projected outcomes.

By following this methodology, stakeholders can gain insights into the potential impact of different recommendations on improving access to maternal health and make informed decisions about which interventions to prioritize and implement.

Author

Dima Health

Statistics:

Citations: 15

Identifiers:

DOI: 10.1002/jia2.25057

Research Areas:

Community Interventions, Environmental, Food Security, Health System and Policy, Infectious Diseases, Maternal Access, Maternal and Child Health, Quality of Care, Sexual and Reproductive Health, Social Determinants, Technology and Innovations

Study Countries:

South Africa

Study Design:

Cohort Study, Phenomenological Study

Study Approach:

Mixed-methods, Qualitative, Quantitative

Participants Gender:

Male & Female