Title: | Meet and eat, an interdisciplinary group intervention for patients with myotonic dystrophy about healthy nutrition, meal preparation, and consumption: a feasibility study |
Author(s): | Hees, S.G.M. van ; Knuijt, S. ; Dicke, H ; Groothuis, JT ; Raaphorst, J ; Satink, T. ; Cup, Edith |
Publication year: | 2020 |
Source: | Disability and Rehabilitation, vol. 42, iss. 11, (2020), pp. 1561-1568 |
Number of Pages: | 8 p. |
ISSN: | 0963-8288 |
DOI: | https://doi.org/10.1080/09638288.2018.1528305 |
Publication type: | Article / Letter to editor |
Please use this identifier to cite or link to this item : https://hdl.handle.net/20.500.12470/1490 ![]() |
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Lectorate : | Arbeid en Gezondheid Neurorevalidatie |
Journal title : | Disability and Rehabilitation |
Volume : | vol. 42 |
Issue : | iss. 11 |
Page start : | p.1561 |
Page end : | p.1568 |
Abstract: |
Purpose: To develop and evaluate an interdisciplinary group intervention for patients with myotonic dystrophy regarding healthy nutrition, meal preparation, and consumption, called Meet and Eat. Materials and methods: A design-based approach was used, exploring experiences and needs of patients with myotonic dystrophy and their next of kin. This resulted in a 4-week interdisciplinary outpatient group intervention to increase awareness and change behavior. In a mixed-method feasibility study this intervention was evaluated with participants and facilitators. Results: Participants reported on social impact of difficulties with eating and drinking (speaking, swallowing, and social embarrassment) and a variety of complaints affecting meal preparation and consumption. Patients and family members expressed the wish to learn from others. After delivery of the intervention, self-reported outcome measures demonstrated improvement on eating and drinking issues in daily life. The qualitative evaluation showed increased awareness and appreciation of the following design principles: peer support, multidisciplinary approach, active involvement of patient with myotonic dystrophy and their next of kin by using personal goals and motivational interviewing. Conclusion: Participation in Meet and Eat seemed to increase insight in patients' condition and ways of management. However, a longer self-management life style program is recommended to change behavior.
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