From Mother to Caregiver: Mothering Children with Lifestyle Care Needs Across the Life’s Course

Mothers caring for children with complex health and social care needs are socially responsible for preserving and fostering the lives of their children and families, sometimes under extreme pressure and expectations. This work of caring for children is overwhelmingly the responsibility of mothers. The social expectation in most cultures is that mothers should care for their children regardless of the medical, social, economic, or physical circumstances. These experiences of mothering and care work, structured from women’s daily lives, have been largely unknown, hidden, or silenced, and not considered as important knowledge. This book is an international collection written by mothers, about mothering and caregiving. The submissions straddle the continuum between personal accounts and research. The collection offers insight into how to support and build capacity for mothers’ profound courage, creativity, persistence, and strengths in meeting these care responsibilities. These experiences provide insight into the need for equitable care arrangements and care models that support mothers caring for children with complex care needs.

Genevieve Currie is the mother of two children, both with neurodevelopmental disorders, and one which has a rare medically complex disease. She is a parent advocate, registered nurse, and researcher. She is an Associate Professor in the School of Nursing and Midwifery at Mount Royal University, Calgary, Alberta, Canada. Her current research and expertise interests are focused on family centered care, family engagement in health care and research, and pediatric medical complexity and rare diseases. Kinga Pozniak is a socio-cultural anthropologist and currently a postdoctoral researcher at CanChild Centre for Childhood Disability Research at McMaster University, Canada. Her research focuses on the experiences of disabled children and their families. She is also a mother of two boys, one of whom lives with a disability.