The Experience of Family Caregivers Within the Acute Care Hospital Setting: An Institutional Ethnography

Petrina McGrath, Fielding's School of Human and Organizational Development

This thesis examines the experience of family caregivers when their family member is admitted to an acute care Canadian hospital. Family caregivers play a critical role in the Canadian health care system. In 2012, 28% of Canadians over the age of 15 were engaged in a caregiving role (Turcotte, 2013). Several studies have explored the interpersonal relationships between professionals and family caregivers, but few have expanded their understanding by exploring the social and organizational activities that intersect with this relationship. This study used Intuitional Ethnography (IE) to examine critically the acute care hospital experience from the standpoint of the family caregiver. Interviews made visible the work that family caregivers engage. This work included: a) support work, b) knowledge development work, c) knowledge exchange work, and d) advocacy work. Organizational and professional processes that intersect with family caregivers work surfaced and were traced to broader organizational discourses of hospital efficacy and professional knowledge as expert. Family caregivers are caught in a complex web where public policy views family caregivers as knowledgeable consumers who take on primary responsibility for the care of their family member at home, yet once they enter the acute care hospital setting, the discourse of professional knowledge as expert and managerial discourse of efficiency can situate the family caregiver in an environment of tension where their knowledge is not consistently elicited or utilized. This study will assist patient and family advocates to understand the broader organizational activities that influence the family caregiver experience and support health care professionals and administrators to understand the impact of broader policy and system activities on the family caregivers experience and patient family centered care strategies.

Key words: family caregiver, institutional ethnography, acute care hospital, discourse, patient family centered care