Swedish parents' experiences of their role in treatment for children with congenital limb reduction deficiency: Decision-making and treatment support

Abstract

Background: Parents of children with congenital limb reduction deficiency have an essential role in making treatment decisions during their child's first years of life. Treatment options usually concern surgical and/or prosthetic treatment. To tailor treatment options to fit different family values and priorities, the family-centred approach indicates the importance of understanding the parental role in partnership with health care professionals. The aim of this study was to describe parents' experiences of their role in decision-making and treatment for children with congenital limb reduction deficiency. Methods: A descriptive design with a qualitative approach was used. Semi-structured interviews were conducted with 17 parents (12 mothers and 5 fathers) of children with upper and/or lower limb deficiency (mean age 5.9 years). The interview data were analysed using qualitative content analysis with an inductive approach. Results: Two major themes emerged from the data. The first theme, being a decision maker for someone else, was described as an ambivalent parental role, including collaboration within the family and with health care professionals. The second theme, becoming and being a treatment supporter in the child's everyday life, was made up of four categories: being a supporter of the child in everyday activities, mentoring the child to handle encounters with others, becoming a coordinator of information and being an ‘extended arm’ of the health care provision for the child. Conclusions: This study enhances our understanding of the parental role in decision-making and treatment for children with congenital limb reduction deficiency. The results may contribute to the continued development of the family-centred service approach by providing guidelines for treatment programmes, with the goal of improving decision support and broadening the support for parents during treatment for these children.