Heather L MacDonald

Heather L MacDonald

University of New Brunswick, Canada

Title: Fair play: Respite for parents caring for children requiring complex home care


Heather L MacDonald completed a Master’s degree in Nursing at University of Toronto, Canada and a PhD at the University of Manchester in the UK. Currently she is a Professor in the Faculty of Nursing at the University of New Brunswick (Canada). Her doctoral work examined respite for parents who were caring for children who required complex care. This paper comes from that work.


Advances in nursing and medical care augmented by developments in pharmaceutical and health technologies have led to an increasing number of children who require complex care at home. Parents are their care-givers. In this ethnographic study there were 47 participants out of whom 19 were mothers, 4 fathers, 7 grand-parents, 13 nurses and 4 Social Workers. Data Collection consisted of in-depth interviews; participant observation and document review. There were five emergent themes: Parents Caring; Caring and the Impact on Parental Identity; The Nature of Respite and Fair Play. In this paper the key categories within the theme Fair Play will be discussed. These categories include: Care obligations, feelings of entitlement, respite information needs, ongoing support needs, negotiating the system and equity.