Introduction: In the past decade the relationship between parents, families and health service providers has changed. Parents are increasingly involved in decision making and treatment processes. Parents to children with congenital limb deficiency are facing many decisions related to their child during the child’s first years; decisions about e.g. when or if to start interventions. Usually interventions concern surgical and/or prosthetic treatment.
Objectives: The aim of this study is to describe parent´s experiences of their role in decision-making and treatment for children with congenital limb deficiency.
Method: Qualitative data were collected through semi-structured individual interviews. The interviews were conducted with parents to children, one to ten year of age, with some kind of congenital limb deficiency. The data was analyzed using qualitative content analysis with inductive approach.
Results: The result from the analysis shows themes revealing parents’ experiences of being a collaborator within the family and between health providers and family, facing and handling early decisions for the child, and, being and acting as a supporter in everyday life.
Conclusion: The results contribute to new knowledge and understanding of parents’ role in decision and treatment of children with congenital limb deficiency. This may help to further improvement of family centered health service for families with children with congenital disabilities.