The study findings have been incorporated into training for Renison and other social work students and in nursing and oncology programs. Parents often became advocates for their child and began raising awareness or funds for the condition. Parents talked about building connections with others especially through organizations connected to their child’s disease, conferences, and when meeting other families at hospitals, clinics, hospices, or over the internet. Almost all of the parents showed some growth such as better relationships, greater strength, more appreciation of life, and spiritual changes. This study found that, along with the all of the stresses of caring for a child with a life-limiting illness, parents also experienced growth. Mothers in particular had to choose between working and caring for their child. Additionally, more than two thirds of caregivers reported that their income changed due to their child’s illness, and half reported a change in their employment status. The study finds that dealing with concerns for their child’s well-being is made even more difficult by the financial stress that many families experience – almost half of parents reported they struggled with major expenses like buying a new vehicle to accommodate a wheelchair, moving closer to services, travel to and from appointments, parking costs, and costly medical supplies. Susan Cadell explores posttraumatic growth in parents who are caring for a child with a life-limiting illness and is providing a new perspective on what it means to care for a seriously ill child. While the stress and negative impacts are well known, some parents can also experience positive changes while caring for children with serious and complex conditions.Ī Canadian Institutes of Health Research funded study conducted by Dr. The number of parents who are caring for a child with a life-limiting illness is relatively small however the effects of that experience are far reaching. This is how a mother of a 9 year old boy with a life-limiting illness describes her days. But it’s also really thrilling and exciting.
It’s like half of my day is filled with elation and half of it is grief.
: Associate Director, Research Research in the Classroom Research Apprenticeship A Community of Experts Caring for a Child with a Life-limiting Illness Susan Cadell, director of the School of Social WorkĪnd so we’re always kind of day-by-day … having the experience of not knowing if he’s going to live to see his next birthday, but grooming him for adulthood … so it’s kind of interesting. : A Study in Social Action Renison Book Club : Caring for a Child with a Life-Limiting Illness