Ylva Nilsagård1, Katrin Boström1. 1. Faculty of Medicine and Health, Department of Medicine, Örebro University (YN), and the Department of Health and Medical Services (KB), Region Örebro County, Sweden.
Abstract
BACKGROUND: The aim of this study was to gain an understanding of how health-care services can support the empowerment of children when a parent is diagnosed as having multiple sclerosis (MS). The study focuses on what information parents with MS, their partners, and their children desire from health-care professionals. METHODS: Focus group interviews were conducted with nine adolescents, nine parents with diagnosed MS, and five partners representing members of ten families. RESULTS: The main finding was that parents with MS, their partners, and the adolescents stressed their need to be well informed about the disease. Information should be provided at the time of diagnosis and then offered regularly throughout the disease course. The information should be suited to the recipient's level of maturity and individualized to reflect the parent's clinical picture. CONCLUSIONS: It is usually beneficial for children if their parents feel informed about the illness and encourage their children to ask questions and discuss the situation. This knowledge, gained from several sources, is likely to be of value for health-care professionals and their ongoing efforts to improve services for parents with MS, their partners, and their children.
BACKGROUND: The aim of this study was to gain an understanding of how health-care services can support the empowerment of children when a parent is diagnosed as having multiple sclerosis (MS). The study focuses on what information parents with MS, their partners, and their children desire from health-care professionals. METHODS: Focus group interviews were conducted with nine adolescents, nine parents with diagnosed MS, and five partners representing members of ten families. RESULTS: The main finding was that parents with MS, their partners, and the adolescents stressed their need to be well informed about the disease. Information should be provided at the time of diagnosis and then offered regularly throughout the disease course. The information should be suited to the recipient's level of maturity and individualized to reflect the parent's clinical picture. CONCLUSIONS: It is usually beneficial for children if their parents feel informed about the illness and encourage their children to ask questions and discuss the situation. This knowledge, gained from several sources, is likely to be of value for health-care professionals and their ongoing efforts to improve services for parents with MS, their partners, and their children.