Price: $39.95
Page Count: 300
Publication Date: July 2025
ISBN: 978-1-77258-541-4
Mother-caregivers of vulnerable children endure hard, private, and often misunderstood lives. Literature that represents this unique group is gaining attention. From Mother to Caregiver: Mothering Children with Lifelong Care Needs Across the Life Course is a collection of academic articles and personal narratives written by mother-caregivers and offers diverse methodological approaches ranging from autoethnographic, hermeneutic, and arts infused frameworks to personal essays and reflections, all the while interweaving academic discourse with lived experience. The collection provides a solution-focused integrated care approach crossing numerous sectors, that is planful, and intentional and serves to provide a response to the challenges identified. This is a very important contribution to the field, as families need to find sustainable means in succession planning.
I highly recommend From Mother to Caregiver to guardians, helping professionals, and all those associated with long term care of vulnerable families.
- Nan Stevens, EdD
Author/Scholar/Consultant
Mothers’ Gifts: Best practice for supporting children with exceptional needs
This collection offers readers multiple entry points into the social landscape of mothering and caregiving children living with disabilities. As the authors navigate the complex social ecology of roles/labels, uniquely lived experiences, and pre-existing structural barriers, mothers are rendered liminally agape in the social construct of disability. The edited compilation showcases the energy expended by mothering caregivers in their day-day functioning and routines as a vigilance that must then stretch beyond what is reasonable to address gaps and barriers affecting families living with disability in "othering" social spaces.
- Joanna Szabo RN PhD, Associate Professor, Department of Nursing, Mount Royal University.
Introduction 3
Kinga Pozniak
Section 1: History/Theoretical Background on Mothering, Caregiving and Carework
Chapter 1: Mothering and Care Work 8
Genevieve Currie
Chapter 2: From Seeker to Crusader: How Complex Care Motherhood Shifted My Identity 26
Donna Thomson
Section 2: Mothering and care work of children with disabilities and lifelong care needs: Strengths, dilemmas and challenges
Chapter 3: Poetic Narratives of Mothers Who Have a Child Living with Rarity 42
Genevieve Currie and Joanna Szabo
Chapter 4: Mothering Disabled Children 76
Gretchen Good
Chapter 5: Homeschooling, Cancer and Letting Go: A Parenting Journey 96
Anne Borden King
Section 3: Intersectionality-Intersections
Chapter 6: Navigating the Intersections: The Complexities of Black Mother Caregivers
of Division I Student-Athletes with Chronic Illnesses: Intersections with Professional
work 106
Yvette Latunde
Chapter 7: When Care Work and Paid Work Intersect - Challenges and Learnings of
Lifelong Caregiving in Mothers’ Professional Trajectories 135
Ana Carolina Rodriguez
Section 4: Caregiving Children with Disabilities Beyond Mothering
Chapter 8: Siblings of Children with Medical Complexity 159
Hanae Davis, Samantha Bellefeuille and Linda Nguyen
Chapter 9: My Life as a Lifelong Sibling Caregiver: An Exploration of Choice 177
Mary Sword
Section 4: Mothering, and Caregiving with Adult Children with Disabilities
Chapter 10: Caring for Adult Children with Disabilities in Rural Ontario 190
Anna Przednowek, Sharon Desormeau and Sarah Ederer
Chapter 11: Mothering in a Sandwich Generation 213
Joy Sequin
Section 5: Re/imagining and Re/storying Narratives and Care Models for Children with Lifelong Care Needs
Chapter 12: Children with Medical Complexity - an Integrated Village Approach to Support Mothers and their Families
A. de Groot, Y. Zurynski, K. Hutchinson, J. Fletcher, A. Hickman, R. Lingam 227
Chapter 13: Raising Rural: Rethinking Raising and Caring for Children with Medical
Complexity Living in Rural Communities 253
Ngoc Huynh
Afterword 283
Eva Kittay
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.
