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Service User Perspectives on the Experience of Illness and Pathway to Care in First-Episode Psychosis: A Qualitative Study Within the TOP Project

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Abstract

Delays in initiating treatment are associated with poor clinical and functional outcomes, yet there remains unclarity as to what facilitates and what acts as barriers to accessing appropriate support for first-episode psychosis. To explore this we examined service users’ views of their illness trajectory and help-seeking behavior. To describe service-users' experiences with and understanding of their illness and pathway to care, including their need for treatment, the role of their relatives and experience with the treatment service. In-depth interviews were conducted with eleven randomly selected service users (median age 20, range 15–24, 6 males, 5 females) diagnosed with a first-episode psychosis and currently enrolled in treatment for this disorder. Fear of stigma, lack of knowledge about mental illness and normalisation of symptoms were barriers to accessing appropriate treatment, while support from significant others and information accessed by internet were reported as important elements in seeking appropriate treatment. The findings regarding barriers to treatment are in accordance with themes found in earlier studies and serve to validate these. Our study highlights the need to include psychological factors such as normalisation of symptoms and fear of stigma when attempting to reduce DUP in early psychosis, in addition to initiatives to reduce service delays. Also, a greater use of the potentials inherent in Internet and social media platforms seems important in this regard.

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Acknowledgments

This study was funded by a grant from the Lundbeck Foundation. We thank all the service users who participated in this study, and the staff at Opus for their involvement in recruitment.

Conflict of interest

None.

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Authors and Affiliations

  1. Psychiatric Research Unit, Psychiatry Region Zealand, Toftebakken 9, 4000, Roskilde, Denmark

    Jens Einar Jansen, Peter Michael Wøldike & Erik Simonsen

  2. Early Psychosis Intervention Center, Psychiatry East, Region Zealand, Roskilde, Denmark

    Jens Einar Jansen & Ulrik Helt Haahr

  3. Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark

    Ulrik Helt Haahr & Erik Simonsen

  4. Institute of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark

    Erik Simonsen

  5. Institute of Psychology and Lifelong Learning, Roskilde University, Roskilde, Denmark

    Peter Michael Wøldike

Authors
  1. Jens Einar Jansen
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  2. Peter Michael Wøldike
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  3. Ulrik Helt Haahr
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  4. Erik Simonsen
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Correspondence to Jens Einar Jansen.

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Jansen, J.E., Wøldike, P.M., Haahr, U.H. et al. Service User Perspectives on the Experience of Illness and Pathway to Care in First-Episode Psychosis: A Qualitative Study Within the TOP Project. Psychiatr Q 86, 83–94 (2015). https://doi.org/10.1007/s11126-014-9332-4

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  • DOI: https://doi.org/10.1007/s11126-014-9332-4

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