Living in the in-between: families caring for a child with a progressive neurodegenerative illness

Medical advances in recent years have led to an increased life span for children with progressive, neurodegenerative illnesses. The purpose of this hermeneutic inquiry was to explore the experience of families caring for their child at home. In-depth, audiorecorded interviews with six families (13 interviews) living in western Canada were transcribed and analyzed. The illness journey was revealed to be complex and unpredictable. We discovered many metaphors that spoke to the child's/family's life and explored the paradox of duality, such as holding both joy and sorrow, and containing both suffering and love. We outline implications for policy development within the area of respite care and coordination of services for families. The voices of families must be a vital component to influence and guide education and service development within the emerging specialty of pediatric palliative care.