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Ethics & Engagement across the Wellcome Trust Major Overseas Programmes

Body-mapping: Exploring perspectives of privacy and confidentiality among young people and fieldworkers in mAfrica study in a rural district, South Africa

Busisiwe (Busi) Nkosi is a 2018 GHBN Bursary Fellow

Busi is based at AHRI in South Africa, and works on REACH – Resilience, empowerment and advocacy in women’s and children’s health research. This work will build on 2 case studies to address critical gaps in practical ethics guidance for responsible research with women, children and families in low-income settings.

Project summary: Body-mapping: Exploring perspectives of privacy and confidentiality among young people and fieldworkers in mAfrica study in a rural district, South Africa

m-Africa is a mobile phone-connected diagnostics and online care pathway for optimal delivery of population HIV testing, prevention and care implemented in uMkhanyakude district, KwaZulu-Natal. The proposed study is nested in the “m-Africa: Building mobile phone-connected diagnostics and online care pathways for optimal delivery of population HIV testing, prevention and care in decentralised settings” study.

 Focusing on young people participating in the mAfrica study, as well as fieldworkers providing HIV kits, the proposed study will explore complexities resulting from linkages between personal understandings of privacy, perceptions of trust, and risk, agency, and context by providing an ethical lens on the implementation of the M-Africa study.


Research questions:
1.What are the implications of mobile phones in providing true informed consent for participation in mAfrica study?
2.What do young people understand about privacy and confidentiality when consenting in mAfrica study?
3.How do young people see their involvement in mAfrica study affecting their access to treatment, care and information?
4.What are fieldworkers’ experiences when consenting participants using mobile phones?


Methodology
A qualitative study design including visual narrative techniques will be used to explore the key research questions described above. Body mapping, a process of creating body-maps using drawing or painting will be used to visually represent participants’ feelings, understanding of privacy, trust and confidentiality regarding their participation in the mAfrica study.
We will conduct two distinct participatory workshops; one with the youth participants and the other with the fieldworkers, during which time their body maps will be created. Body mapping will be conducted within focus groups to frame the topic of participation in the m-Africa study and explore the key questions from the different perspectives of the two participant groups.

Comment by Michael Parker on October 2, 2018 at 8:29

Hi Busi. This is such an interesting project. I can't wait to hear how it is going. All the best. Mike

Comment by Busisiwe on October 30, 2018 at 14:26

Project update

The project:  "Body-mapping: Exploring perspectives of privacy and confidentiality among young people and fieldworkers in mAfrica study in a rural district, South Africa" has been granted provisional approval. This is exciting and one less hurdle. We hope to get full approval by end of November.

Project snippet: The study involves creation/use of body-maps to explore how a cohort of fieldworkers and young men and women >18 involved in mAfrica study (primary project) view their participation - confidentiality and privacy in technological/mobile based study. Gill Black, Sustainable Livelihoods Foundation and I will co-facilitate a body-maps workshop.  

“If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward.” Martin Luther King Jr.  

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