Abstract
In this thesis, research on self-management and self-management interventions for young adults and adult patients suffering from a rheumatic disease is presented. Self-management interventions aim to support the patient in dealing with the consequences of rheumatism in daily life. The interventions are based on needs assessment for self-management support within both groups. Next to that, patients participated actively during the whole research cycle: from development of the interventions, to defining research goals, choosing the design and offering input and analyzing and describing the results. This resulted in the development of a transition outpatient clinic at the University Medical Center Utrecht. Here young adults with rheumatism and their parents are guided in the transition from children's to adult care. Furthermore, online self-management training for young people and adults with rheumatism are developed in which participants are guided by other patients, suffering from a rheumatic disease themselves (www.reumauitgedaagd.nl). Also an online portal for both groups and an informative website for young people (www.jong-en-reuma.nl) are developed and imbedded in daily care.
Feasibility studies in both populations and a RCT among young adults showed that the interventions are feasible and promising to enhance self-management. Also they meet the needs and preferences for self-management support of both groups. Consequently, the interventions are a valuable contribution to usual medical care. Furthermore, a reflection on the process of development, research and implementation and the consequences for the health care professionals in daily practice are described in the thesis.
Feasibility studies in both populations and a RCT among young adults showed that the interventions are feasible and promising to enhance self-management. Also they meet the needs and preferences for self-management support of both groups. Consequently, the interventions are a valuable contribution to usual medical care. Furthermore, a reflection on the process of development, research and implementation and the consequences for the health care professionals in daily practice are described in the thesis.
Original language | English |
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Awarding Institution |
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Supervisors/Advisors |
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Award date | 8 Dec 2016 |
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Print ISBNs | 978-90-393-6683-7 |
Publication status | Published - 8 Dec 2016 |
Keywords
- needs
- preferences
- selfmanagement
- intervention
- young adults
- adults
- rheumatism
- online
- feasibility
- RCT