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  • 1.
    Muus, Ingrid
    et al.
    Nordic Council of Ministers, Nordic School of Public Health NHV.
    Christensen, Doris
    Petzold, Max
    Nordic Council of Ministers, Nordic School of Public Health NHV.
    Harder, Ingegerd
    Johnsen, Søren Paaske
    Kirkevold, Marit
    Ringsberg, Karin C
    Nordic Council of Ministers, Nordic School of Public Health NHV.
    Responsiveness and sensitivity of the Stroke Specific Quality of Life Scale Danish version.2011In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 33, no 25-26, p. 2425-33Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To test responsiveness and sensitivity to change of the Stroke Specific Quality of Life Scale Danish version (SSQOL-DK) scores in patients following stroke.

    METHODS: A follow-up study of 150 patients with first-ever stroke was used. Questionnaires on quality of life, fatigue, depression, and functional level were completed. Direction of change was categorised as deterioration, no change or improvement. Proportion of concordant classification with external criteria was assessed. Associations between differences in SSQOL-DK domains and the other instruments were estimated using Spearman's rank order correlation coefficients. Paired t-test was used to assess change in the SSQOL-DK domains in patients affected in that domain. Effect size and standardised response mean (SRM) were used to express domain responsiveness.

    RESULTS: SSQOL-DK classified concordantly in 42.2 to 58.1%, and misclassified from zero to 31.3%. Changes in SSQOL-DK and in the corresponding measures correlated from (r(s)) 0.08 to -0.58. Fatigue and domain energy in SSQOL-DK were negatively correlated. Effect size ranged from -0.03 to -0.53, SRM from -0.02 to -0.56 reflecting mild-to-moderate responsiveness in eight out of 12 domains.

    CONCLUSION: SSQOL-DK is mildly to moderately responsive and sensitive and can be used for descriptive purposes over time in groups of patients with mild stroke.

  • 2.
    Ostlie, Ingrid L
    et al.
    Nordic Council of Ministers, Nordic School of Public Health NHV.
    Dale, Oystein
    Möller, Anders
    Nordic Council of Ministers, Nordic School of Public Health NHV.
    From childhood to adult life with juvenile idiopathic arthritis (JIA): a pilot study.2007In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 29, no 6, p. 445-52Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To explore the experiences of the health service provision in the transition process from childhood to adult life from the perspective of young patients with juvenile idiopathic arthritis (JIA) and health professionals working in this field.

    METHOD: Two groups of young persons with JIA and two groups of health professionals were interviewed in focus groups. The data were analysed according to approved guidelines for qualitative analysis.

    RESULTS: 'Capability to lead a meaningful adult life' emerged as a core category; capability as a consequence of 'being enabled' from the youths' point of view, and 'enabling the young patients' from the health professionals' perspective. Preparation for the transition and transfer process was perceived as inadequate and seemed dependent on enthusiastic health professionals both in the children's and adult wards. Suggestions for formal improvements were required in four main areas.

    CONCLUSION: This pilot study has identified inadequacies in the transition management provided for young people with JIA. Acceptance of the young persons as active participants in their own transition process might strengthen these young persons' experience of an autonomous identity and enable participation socially and in society, thus enhancing the ability to achieve a meaningful adult life. Further investigations should focus on adults living with JIA, how they lead their lives physically and psychosocially.

  • 3.
    Ostlie, Ingrid Landgraff
    et al.
    Nordic Council of Ministers, Nordic School of Public Health NHV.
    Johansson, Inger
    Department of Nursing, Gjövik University College, Gjövik, Norway, Department of Nursing, Karlstad University, Karlstad, Sweden .
    Möller, Anders
    Nordic Council of Ministers, Nordic School of Public Health NHV.
    Struggle and adjustment to an insecure everyday life and an unpredictable life course. Living with juvenile idiopathic arthritis from childhood to adult life - an interview study.2009In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 31, no 8, p. 666-74Article in journal (Refereed)
    Abstract [en]

    PURPOSE: . To obtain a deeper understanding of the meaning of living with juvenile idiopathic arthritis (JIA) through childhood and adolescence into adult life as described by young adults with JIA themselves.

    METHOD: Based on a qualitative study design, 15 young adults were interviewed individually. The data were analysed using a qualitative content analysis approach.

    RESULTS: Living with JIA involves struggle and adjustment to an insecure everyday life and an unpredictable life course. The informants' experiences emerged as dichotomies on a continuum describing the dynamics in life experiences individually and over time. The categories include bodily experiences of limitations or freedom, being acknowledged or set aside in interpersonal relationships, and intrapersonal experiences of insecurity or confidence. The findings indicate a change to greater acceptance and adjustment to the disease over time.

    CONCLUSION: The impact of JIA on life in a time of transition from childhood to adult life involves complex challenges on coping strategies and adjustment processes. Understanding this complexity is urgent for health professionals to contribute to both normal developmental task achievements and overall well-being for young people with JIA. Further investigations should focus on coping and adjustment processes when facing disease fluctuations and unpredictability in a life-span perspective.

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