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Paper short abstract

We reflect on the methodological challenges of qualitative research with the support of local grassroots organisations of childhood cancer in low- and middle-income countries. Relying on them as trustworthy side doors of alternative stakeholders to reach respondents shaped our research practice.

Paper long abstract

We present a methodological reflection on the challenges, contingencies, and possibilities of conducting qualitative research through and with the support of local grassroots organisations of childhood cancer in low- and middle-income countries (LMIC). Access to children who have survived life-threatening diseases and their parents/ caregivers for social science research is daunting. A trusted side door may be necessary when hospitals (the common front door) are overwhelmed and focused on treatment or quantitative, biomedical research. The Engagement Task Force of the International Society of Paediatric Oncology gathered a multidisciplinary team of qualitative researchers to explore LMIC parent/caregiver/survivor engagement during childhood cancer treatment. Although engagement is well documented in high-income countries, little information is available from LMIC. We conducted interviews and focus group discussions in 9 LMIC in partnership with local childhood cancer support organizations (NGOs). Relying on NGOs as trustworthy side doors of alternative stakeholders shaped our research practice and results. We conclude that by shifting the (main) entry point to approach participants and the scope of conversation we were able to bring to the surface the ways in which parents/caregivers and survivors were–in their own terms and with their socio-cultural resources–active and engaged in their child’s or their own treatment.