Heather MacDonald
University of New Brunswick,Canada
Title: Respite for parents of children who require complex care
Biography
Biography: Heather MacDonald
Abstract
Current literature states that advances in nursing and medical care and developments in pharmaceutical and health technologies have led to an increasing number of severely disabled children who require complex health care. These children who require complex care are being cared for in their homes by their parents. The purpose of this study was to better understand parents’ caregiving experiences and to explore the values, beliefs and practices that influence parents’ use and satisfaction with respite services. An ethnographic study involving 19 mothers, four fathers and four grandmothers and three grandfathers of children between the ages of eight and 16 years who required complex care and their respite providers, including 13 nurses and four social workers from three counties in Northwest England was conducted. Data were collected through in-depth interviews, participant observation and document review. The context of caring for a child with complex care needs was described and four broad themes were identified in the data. These themes include: parents caring, caring and the impact on parental identity, the nature of respite and fair play. These themes will be discussed in the presentation.