Psychiatric Quarterly

, Volume 86, Issue 1, pp 83–94 | Cite as

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

  • Jens Einar JansenEmail author
  • Peter Michael Wøldike
  • Ulrik Helt Haahr
  • Erik Simonsen
Original Paper


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.


Pathways to care FEP Early intervention Psychosis Qualitative 



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



  1. 1.
    McGorry P, Johanessen JO, Lewis S, et al.: Early intervention in psychosis: Keeping faith with evidence-based health care. Psychological Medicine 40:399–404, 2010. doi: 10.1017/S0033291709991346.CrossRefPubMedGoogle Scholar
  2. 2.
    Marshall M, Lewis S, Lockwood A, et al.: Association between duration of untreated psychosis and outcome in cohorts of first-episode patients: A systematic review. Archives of General Psychiatry 62:975–83, 2005. doi: 10.1001/archpsyc.62.9.975.CrossRefPubMedGoogle Scholar
  3. 3.
    Hegelstad WTV, Larsen TK, Auestad B, et al.: Long-term follow-up of the TIPS early detection in psychosis study: Effects on 10-year outcome. The American Journal of Psychiatry 169:374–80, 2012. doi: 10.1176/appi.ajp.2011.11030459.CrossRefPubMedGoogle Scholar
  4. 4.
    Anderson KK, Fuhrer R, Malla AK: The pathways to mental health care of first-episode psychosis patients: A systematic review. Psychological Medicine 40:1585–97, 2010. doi: 10.1017/S0033291710000371.CrossRefPubMedGoogle Scholar
  5. 5.
    Birchwood M, Connor C, Lester H, et al.: Reducing duration of untreated psychosis: Care pathways to early intervention in psychosis services. The British Journal of Psychiatry 203:58–64, 2013. doi: 10.1192/bjp.bp.112.125500.CrossRefPubMedGoogle Scholar
  6. 6.
    Lincoln C, Harrigan S, McGorry PD: Understanding the topography of the early psychosis pathways. An opportunity to reduce delays in treatment. The British Journal of Psychiatry. Supplement 172:21–5, 1998.PubMedGoogle Scholar
  7. 7.
    Judge AM, Estroff SE, Perkins DO, Penn DL: Recognizing and responding to early psychosis: A qualitative analysis of individual narratives. Psychiatric Services 59:96–9, 2008. doi: 10.1176/ Scholar
  8. 8.
    Cadario E, Stanton J, Nicholls P, et al.: A qualitative investigation of first-episode psychosis in adolescents. Clinical Child Psychology and Psychiatry 17:81–102, 2012. doi: 10.1177/1359104510391860.CrossRefPubMedGoogle Scholar
  9. 9.
    Boydell KM, Gladstone BM, Volpe T: Understanding help seeking delay in the prodrome to first episode psychosis: A secondary analysis of the perspectives of young people. Psychiatric Rehabilitation Journal 30:54–60, 2006. doi: 10.2975/30.2006.54.60.CrossRefPubMedGoogle Scholar
  10. 10.
    Tanskanen S, Morant N, Hinton M, et al.: Service user and carer experiences of seeking help for a first episode of psychosis: A UK qualitative study. BMC Psychiatry 11:157, 2011. doi: 10.1186/1471-244X-11-157.CrossRefPubMedCentralPubMedGoogle Scholar
  11. 11.
    Petersen L, Jeppesen P, Thorup A, et al.: A randomised multicentre trial of integrated versus standard treatment for patients with a first episode of psychotic illness. BMJ 331:602, 2005. doi: 10.1136/bmj.38565.415000.E01.CrossRefPubMedCentralPubMedGoogle Scholar
  12. 12.
    Braun V, Clarke V: Using thematic analysis in psychology. Qualitative Research in Psychology 3:77–101, 2006. doi: 10.1191/1478088706qp063oa.CrossRefGoogle Scholar
  13. 13.
    Anderson KK, Fuhrer R, Malla AK: “There are too many steps before you get to where you need to be”: Help-seeking by patients with first-episode psychosis. Journal of Mental Health 22:384–95, 2013. doi: 10.3109/09638237.2012.705922.CrossRefPubMedGoogle Scholar
  14. 14.
    Singh SP, Grange T: Measuring pathways to care in first-episode psychosis: A systematic review. Schizophrenia Research 81:75–82, 2006. doi: 10.1016/j.schres.2005.09.018.CrossRefPubMedGoogle Scholar
  15. 15.
    Czuchta DM, McCay E: Help-seeking for parents of individuals experiencing a first episode of schizophrenia. Archives of Psychiatric Nursing 15:159–70, 2001. doi: 10.1053/apnu.2001.25415.CrossRefPubMedGoogle Scholar
  16. 16.
    Corcoran C, Gerson R, Sills-Shahar R, et al.: Trajectory to a first episode of psychosis: A qualitative research study with families. Early Intervention in Psychiatry 1:308–315, 2007. doi: 10.1111/j.1751-7893.2007.00041.x.CrossRefPubMedCentralPubMedGoogle Scholar
  17. 17.
    Compton MT, Chien VH, Leiner AS, et al.: Mode of onset of psychosis and family involvement in help-seeking as determinants of duration of untreated psychosis. Social Psychiatry and Psychiatric Epidemiology 43:975–82, 2008. doi: 10.1007/s00127-008-0397-y.CrossRefPubMedGoogle Scholar
  18. 18.
    Jansen JE, Haahr UH, Harder S, et al.: Caregiver distress in first-episode psychosis: The role of subjective appraisal, over-involvement and symptomatology. Social Psychiatry and Psychiatric Epidemiology, 2014 doi: 10.1007/s00127-014-0935-8.Google Scholar
  19. 19.
    Jansen JE, Harder S, Haahr UH, et al.: The role of metacognitions in expressed emotion and distress: A study on caregivers of persons with first-episode psychosis. Clinical Psychology and Psychotherapy n/a–n/a, 2014. doi:  10.1002/cpp.1907.
  20. 20.
    Kuipers E, Onwumere J, Bebbington P: Cognitive model of caregiving in psychosis. The British Journal of Psychiatry The Journal of Mental Science 196:259–65, 2010. doi: 10.1192/bjp.bp.109.070466.
  21. 21.
    Cotton SM, McCann T V, Gleeson JF, et al.: Coping strategies in carers of young people with a first episode of psychosis. Schizophrenia Research 146:118–24, 2013. doi: 10.1016/j.schres.2013.02.008.CrossRefPubMedGoogle Scholar
  22. 22.
    McCann T V, Lubman DI, Clark E: First-time primary caregivers’ experience accessing first-episode psychosis services. Early Intervention in Psychiatry 5:156–162, 2011. doi: 10.1111/j.1751-7893.2010.00246.x.CrossRefPubMedGoogle Scholar
  23. 23.
    Cole E, Leavey G, King M, et al.: Pathways to care for patients with a first episode of psychosis. A comparison of ethnic groups. The British Journal of Psychiatry 167:770–776,1995. doi: 10.1192/bjp.167.6.770.CrossRefPubMedGoogle Scholar
  24. 24.
    Lester H, Birchwood M, Freemantle N, et al.: REDIRECT: Cluster randomised controlled trial of GP training in first-episode psychosis. The British Journal of General Practice 59:e183–90, 2009. doi: 10.3399/bjgp09X420851.CrossRefPubMedCentralPubMedGoogle Scholar
  25. 25.
    McGorry PD, Hickie IB, Yung AR, et al.: Clinical staging of psychiatric disorders: A heuristic framework for choosing earlier, safer and more effective interventions. Australian and New Zealand Journal of Psychiatry 40:616–22, 2006. doi: 10.1111/j.1440-1614.2006.01860.x.CrossRefPubMedGoogle Scholar
  26. 26.
    McGorry PD, Yung AR, Bechdolf A, Amminger P: Back to the future: Predicting and reshaping the course of psychotic disorder. Archives of General Psychiatry 65:25–7, 2008. doi: 10.1001/archgenpsychiatry.2007.9.CrossRefPubMedGoogle Scholar
  27. 27.
    Birchwood M, Fiorillo A: The critical period for early intervention. Psychiatric Rehabilitation Skills 4:182–198, 2000. doi: 10.1080/10973430008408405.CrossRefGoogle Scholar
  28. 28.
    Joa I, Johannessen JO, Auestad B, et al.: The key to reducing duration of untreated first psychosis: Information campaigns. Schizophrenia Bulletin 34:466–72, 2008. doi: 10.1093/schbul/sbm095.CrossRefPubMedCentralPubMedGoogle Scholar
  29. 29.
    Krstev H, Carbone S, Harrigan SM, et al.: Early intervention in first-episode psychosis—the impact of a community development campaign. Social Psychiatry and Psychiatric Epidemiology 39:711–9, 2004. doi: 10.1007/s00127-004-0798-5.CrossRefPubMedGoogle Scholar
  30. 30.
    Lloyd-Evans B, Crosby M, Stockton S, et al.: Initiatives to shorten duration of untreated psychosis: Systematic review. The British Journal of Psychiatry 198:256–63, 2011. doi: 10.1192/bjp.bp.109.075622.CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Jens Einar Jansen
    • 1
    • 2
    Email author
  • Peter Michael Wøldike
    • 1
    • 5
  • Ulrik Helt Haahr
    • 2
    • 3
  • Erik Simonsen
    • 1
    • 3
    • 4
  1. 1.Psychiatric Research UnitPsychiatry Region ZealandRoskildeDenmark
  2. 2.Early Psychosis Intervention CenterPsychiatry East, Region ZealandRoskildeDenmark
  3. 3.Faculty of Health and Medical SciencesUniversity of CopenhagenCopenhagenDenmark
  4. 4.Institute of Clinical MedicineUniversity of CopenhagenCopenhagenDenmark
  5. 5.Institute of Psychology and Lifelong LearningRoskilde UniversityRoskildeDenmark

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