Persistent pain affects a growing number of children and adolescents in Finland, yet its care has only recently become an object of targeted healthcare intervention in the country. The PAINCARE project traces families' pathways through the emerging landscape of Finnish pediatric persistent pain care. It weaves together medical anthropology, childhood studies, and feminist parenting studies to conceptualise persistent pain and its care as affective assemblages. It explores these assemblages through reflexive ethnography in family homes and Finnish hospitals that provide specialized pediatric pain care.
PAINCARE's methodology is designed to enable symmetrical cross-analysis of the perspectives of pain-affected children, their parents and professional care-givers. The study incorporates 1) co-creating and using appropriate child-centred methods for researching young pain patient’s experiences; 2) in-depth interviews with parents; 3) observation of families' pain clinic visits and rehabilitation weeks in public healthcare settings in Finland; 4) interviews with clinicians and observation of professional trainings and scientific conferences on pediatric pain; and 5) extended case studies of patient families' everyday lives and interactions with care providers. Interviews with children and parents will take place prior to and six months after their first pain clinic visit, which will enable longitudinal analysis of the trajectories of pain and care.
PAINCARE will produce new knowledge by answering the following questions:
1) how does prolonged pain affect the everyday lives of families living in Finland, and how do families maintain hope amid suffering?
2) how are the meanings and management of pain negotiated in clinical encounters?
3) how do gender, race and class, and perceptions of them, shape the trajectories of pain and its care?
PAINCARE contributes to existing literature particularly by producing synthesised ethnographic insight on pain care in a public healthcare setting, and by crafting space for children's perspectives alongside those of adults. Its social relevance draws from its ability to speak to the multiple urgent concerns that come together in the affective assemblages of pediatric pain and its care: the rapid decline in young people's well-being in the aftermath of the COVID-19 pandemic; the growing public health burden of chronic pain; the tensions of parenting amid burnout culture; and the future of care in Nordic post-welfare states.