Lived experience of parents of children with life-limiting and life-threatening disease

Abstract

Aim: The aim of the research was to identify and describe the problems and experiences of family members caring for children with life-threatening or life-limiting diseases from diagnosis to the eventual death of the child. Design: A qualitative study using grounded theory method. Methods: The sample consisted of eight family members with experience of direct care of children with life-limiting or life-threatening disease. For data collection a technique of non-standardized interview was used. Results: Based on data analysis, four main categories and subcategories were defined: 1. onset of the disease (diagnosis, prognosis and awareness), 2. therapeutical phase (demands of care, the impact of disease and treatment on the family), 3. the acceptance of life with disease (feelings and emotions, coming to terms with disease) and 4. dying and death (dignified dying, the period after death). Conclusion: Serious disease in a child is a difficult life situation for parents, associated with changes in their personal and family life. Carers need psychosocial support, especially in the form of advice, and require the exercise of empathy and open communication.