Art-based reflections from 12 years of adolescent health and development-related research in South Africa.

This paper presents empirical and methodological findings from an art-based, participatory process with a group (n = 16) of adolescent and young advisors in the Western Cape Province of South Africa. In a weekend workshop, participants reflected on their participation in 12 years of health and development-related research through theatre, song, visual methodologies and semi-structured interviews. Empirical findings suggest that participants interpreted the group research encounter as a site of empowerment, social support and as a socio-political endeavour. Through song, theatre and a mural illustration, they demonstrated that they value 'unity' in research, with the aim of ameliorating the conditions of adolescents and young people in other parts of South Africa and the continent. Methodological findings document how participants deployed art-based approaches from South Africa's powerful history of activism, including the struggle against apartheid, the fight for anti-retroviral therapy and more recent social movements towards decolonization.

Investigation of post-trial access views among study participants and stakeholders using photovoice and semistructured interviews.

PURPOSE: We examine the levels of post-trial responsibility ascribed to different stakeholders, following a community-based clinical trial and how the 'responsibility' is understood. METHODS: We employed photovoice, unstructured observations and key informant interviews to gain insights into contexts of access to care following transition to the public health system post trial. We used an inductive narrative analysis to explore experiences and understandings of post-trial access (PTA). RESULTS: In their photovoice stories, many participants expressed a sense of abandonment after the trial. This was viewed as a contributing factor to failing to re-engage with care available in the public health system. This led to the experiences of loss as some trial participants defaulted and died. Research investigators, department of health participants and sponsor agreed that PTA was especially important for communities in resource-limited settings. The government has an obligation towards its citizens while researchers have a responsibility to ensure a smooth transition of patients to public clinics. Sponsors have a responsibility to ensure that the trial is conducted in accordance with the protocol and post-trial agreements are in place and adhered to. Research partnerships among stakeholders were affected by power imbalances making it difficult to negotiate and plan for post-trial care responsibilities. CONCLUSIONS: The research community still struggles with understanding the scope of PTA responsibilities. Power dynamics between public health actors and research sponsors need to be managed to ensure that government involvement is not tokenistic. The responsibility of trial participants and ethics committees needs to be investigated further.