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  • 1.
    Nilsagård, Ylva
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Boström, Katrin
    Örebro University Hospital. School of Health and Medical Sciences (KB), Örebro University, Örebro, Sweden.
    Informing the children when a parent is diagnosed as having multiple sclerosis2015In: International Journal of MS Care, ISSN 1537-2073, E-ISSN 2227-5789, Vol. 17, no 1, p. 42-8Article in journal (Refereed)
    Abstract [en]

    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.

  • 2.
    Nilsagård, Ylva
    et al.
    Örebro University, School of Health and Medical Sciences.
    Denison, Eva
    Gunnarsson, Lars-Gunnar
    Boström, Katrin
    Factors perceived as being related to accidental falls by persons with multiple sclerosis2009In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 31, no 16, p. 1301-1310Article in journal (Refereed)
    Abstract [en]

    Purpose. This study explores and describes factors that persons with multiple sclerosis (MS) perceive as being related to accidental falls. Method. A qualitative content analysis with primarily deductive approach was conducted using the International Classification of Functioning, Disability and Health. Twelve persons with MS, and identified as fallers, were interviewed. Results. Factors perceived to cause accidental falls that had not previously been targeted in MS populations in relation to falls were identified as divided attention, reduced muscular endurance, fatigue and heat sensitivity. Previously reported risk factors such as changed gait pattern, limited walking ability, impaired proprioception, vision and spasticity were supported. Activities involving walking, recreation and leisure, maintaining and changing body position, lifting or carrying, taking care of the home, washing the body, moving around, preparing meals and housekeeping were limited and considered to be risk activities. Supportive persons and assistive device reduced falls, and unsuitable physical environments and climate conditions induced falls. Several preventative strategies were described as partially compensating for the impairments, limitations and restrictions. Conclusions. Investigating accidental falls using the perspective of the patient gave important information about variables not earlier targeted in MS research.

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