Paper short abstract:

The paper describes how working with an established NGO in biomedical spaces facilitates engagement, through reputation with medical staff, and trust when recruiting participants. The researcher works as annex to the NGO, with their networks adopted in service of the research.

Paper long abstract:

The International Society of Paediatric Oncology’s (SIOP) Patient, Family, and Survivor Engagement working group’s multinational research project sought to investigate engagement between these parties and medical professionals during childhood cancer treatment. To reach this population in South Africa, unconventional methods were used, including working with and through an established NGO in paediatric oncology in South Africa: CHOC Childhood Cancer Foundation SA. The controlled, regimented, and regulated space of the paediatric oncology centre focuses primarily on the health of the child, while CHOC’s contribution meets psychosocial needs and counsels on diagnosis and treatment (in-house social workers staffed by CHOC). Their forty-year plus reputation facilitated permissions and buy-in of medical professionals. Potential participants were inspired to engage, as the project presented an opportunity to help as they had been helped. This paper will explain how working with and through established NGOs in biomedical spaces, a more diverse socio-cultural, economic, and demographic picture of the Non-Communicable Disease population is obtained. The collaboration fosters a ‘for us, by us’ approach, elevating subjects into participants and contributors.