Investigating the social organization of family health work: an institutional ethnography

Abstract

This article reports findings from focus group conversations and in-depth interviews about the things that parents do to take care of their children’s health in Toronto, Canada. Our data demonstrate that within a single urban setting, parents are differently positioned to effectively find and engage existing healthcare resources. Parents’ ‘family health work’ is shaped by systemic expectations for health and institutional literacy and inter-institutional navigation skills that not all parents possess in equal measure. The intensive focus in Ontario paediatric healthcare settings on patient and parent education suggests increased interest in cultivating autonomous health information seeking and use strategies among parents. But the degree to which parents’ health-information seeking and use strategies are deemed effective depends on whether they are able to construct coherence between what they know about their child’s health and how to take care of it, and the knowledge the medical system requires to support diagnosis and treatment. Our research suggests that the healthcare system is only interested in information-seeking autonomy insofar as it supports patients’ engagement with the systems’ existing practices, frames of validity and service pathways. People who are unable to demonstrate health knowledge and work that support existing systemic processes cannot effectively use what they know and do to support their children’s health and wellness.

Keywords:

• Families
• health information
• health work
• determinants of health
• healthcare disparities
• institutional ethnography

Funding

This research was supported by a 2013 SickKids Innovation Award.

Disclosure statement

No potential conflict of interest was reported by the authors.