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    Exciting but exhausting: Experiences with participatory research with chronically ill adolescents

    Access Status
    Fulltext not available
    Authors
    Van Staa, A.
    Jedeloo, S.
    Latour, Jos
    Trappenburg, M.
    Date
    2010
    Type
    Journal Article
    
    Metadata
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    Citation
    Van Staa, A. and Jedeloo, S. and Latour, J. and Trappenburg, M. 2010. Exciting but exhausting: Experiences with participatory research with chronically ill adolescents. Health Expectations. 13 (1): pp. 95-107.
    Source Title
    Health Expectations
    DOI
    10.1111/j.1369-7625.2009.00574.x
    ISSN
    1369-6513
    School
    School of Nursing and Midwifery
    URI
    http://hdl.handle.net/20.500.11937/46539
    Collection
    • Curtin Research Publications
    Abstract

    Background Adolescents with chronic conditions are major users of paediatric hospitals, but seldom participate in the evaluation of services or in research. Little is known about the usefulness of the participatory approach in adolescent health research. Objective To evaluate the feasibility, benefits and limitations of a participatory research (PR) project involving chronically ill adolescents as co-researchers. Design, setting and participants Nine adolescents, aged 15-17 years, acted as co-researchers in a hospital-based PR project. They co-developed an interview protocol and during a disco party held for this purpose interviewed each other and 25 fellow patients (12-19 years). They provided advice on the draft report and participated in the dissemination of the results, but were not involved in the design of the project or analysis of results. Results Involving adolescents in participatory health research was feasible and appreciated by researchers and youth alike, but had its drawbacks too. The peer-research attracted few participants, the interviews lacked depth and did not yield substantial new insights. Maintaining a high level of participation of the chronically ill co-researchers also proved difficult. Conclusions Adolescents with chronic conditions like to have a say in the design and evaluation of hospital services. But their participation as co-researchers demands ample resources from all parties involved without automatically improving research quality. PR does not seem the most effective and efficient way to make services more responsive. We therefore recommend further exploration of other creative and sustainable ways for involving youth in health-care service development and innovation. © 2009 Blackwell Publishing Ltd.

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