Caregiver distress in first-episode psychosis: the role of subjective appraisal, over-involvement and symptomatology

  • Jens Einar JansenEmail author
  • Ulrik Helt Haahr
  • Susanne Harder
  • Anne Marie Trauelsen
  • Hanne-Grethe Lyse
  • Marlene Buch Pedersen
  • Erik Simonsen
Original Paper



Caregivers of persons with first-episode psychosis (FEP) often report high levels of distress. Preventing long-term or chronic distress within the whole family is an important focus of early intervention for psychosis. However, a more comprehensive understanding of the psychological factors involved is needed.


To examine the impact of subjective appraisals and expressed emotion on caregiver distress in FEP.


Within a cross-sectional design, 154 caregivers of 99 persons with FEP in a clinical epidemiological sample completed a series of questionnaires to examine potential predictors of caregiver distress.


Thirty-seven percent of caregivers were suffering from clinically significant distress. A linear mixed model analysis found that, after controlling for caregiver socio-demographic factors, service-user symptoms and global functioning, emotional over-involvement and subjective appraisal of caregiving were significant predictors of caregiver distress.


Caregiver distress is significant in the early phase of illness, and this seems to be more related to their subjective appraisal and over-involvement, than to variations in symptoms and global functioning of the person diagnosed with FEP. This lends further support to the stress-appraisal coping model and the cognitive model of caregiving in FEP, and highlights supportive interventions aimed at handling unhelpful cognitions and behaviors.


Caregivers Distress Emotional over-involvement First-episode psychosis 



We are grateful to all of the patients and their caregivers who consented to participate, and to the clinicians in Opus Region Zealand, who provided access to their clients. The Region Zealand Health Scientific Research Foundation provided funding for this research, but had no involvement in the production of this paper.

Conflict of interest



  1. 1.
    Van Os J, Marcelis M, Germeys I, Graven S, Delespaul P (2001) High expressed emotion: marker for a caring family? Compr Psychiatry 42:504–507PubMedCrossRefGoogle Scholar
  2. 2.
    Kuipers E, Bebbington P, Barrowclough B (2005) Research on burden and coping strategies in families of people with mental disorders: problems and perspectives. In: Leff J, Lopez J, Maj M, Okasha A (eds) Sartorius N. Families and mental disorder. From Burden to Empowerment, Wiley, pp 217–234Google Scholar
  3. 3.
    Addington J, Coldham EL, Jones B, Ko T, Addington D (2003) The first episode of psychosis: the experience of relatives. Acta Psychiatr Scand 108:285–289PubMedCrossRefGoogle Scholar
  4. 4.
    Szmukler GI, Burgess P, Herrman H, Benson A, Colusa S, Bloch S (1996) Caring for relatives with serious mental illness: the development of the Experience of Caregiving Inventory. Soc Psychiatry Psychiatr Epidemiol 31:137–148PubMedCrossRefGoogle Scholar
  5. 5.
    Martens L, Addington J (2001) The psychological well-being of family members of individuals with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 36:128–133PubMedCrossRefGoogle Scholar
  6. 6.
    Zubin J, Spring B (1977) Vulnerability: a new view of schizophrenia. J Abnorm Psychol 86:103–126PubMedCrossRefGoogle Scholar
  7. 7.
    Leff J, Kuipers L, Berkowitz R, Eberlein-Vries R, Sturgeon D (1982) A controlled trial of social intervention in the families of schizophrenic patients. Br J Psychiatry 141:121–134PubMedCrossRefGoogle Scholar
  8. 8.
    Kuipers E (2010) Time for a separate psychosis caregiver service? J Ment Health 19:401–404PubMedCrossRefGoogle Scholar
  9. 9.
    Lazarus R, Folkman S (1984) Stress, appraisal, and coping. Springer, New YorkGoogle Scholar
  10. 10.
    Kuipers E, Onwumere J, Bebbington P (2010) Cognitive model of caregiving in psychosis. Br J psychiatry J Ment Sci 196:259–265CrossRefGoogle Scholar
  11. 11.
    Barrowclough C, Lobban F, Hatton C, Quinn J (2001) An investigation of models of illness in carers of schizophrenia patients using the Illness Perception Questionnaire. Br J Clin Psychol 40:371–385PubMedCrossRefGoogle Scholar
  12. 12.
    Wearden AJ, Tarrier N, Barrowclough C, Zastowny TR, Rahill AA (2000) A review of expressed emotion research in health care. Clin Psychol Rev 20:633–666PubMedCrossRefGoogle Scholar
  13. 13.
    Hooley JM (2007) Expressed emotion and relapse of psychopathology. Annu Rev Clin Psychol 3:329–352PubMedCrossRefGoogle Scholar
  14. 14.
    Butzlaff RL, Hooley JM (1998) Expressed emotion and psychiatric relapse: a meta-analysis. Arch Gen Psychiatry 55:547–552PubMedCrossRefGoogle Scholar
  15. 15.
    Gleeson JFM, Cotton SM, Alvarez-Jimenez M, Wade D, Crisp K, Newman B, Spiliotacopoulos D, McGorry PD (2010) Family outcomes from a randomized control trial of relapse prevention therapy in first-episode psychosis. J Clin Psychiatry 71:475–483PubMedCrossRefGoogle Scholar
  16. 16.
    Bird V, Premkumar P, Kendall T, Whittington C, Mitchell J, Kuipers E (2010) Early intervention services, cognitive-behavioural therapy and family intervention in early psychosis: systematic review. Br J psychiatry J Ment Sci 197:350–356CrossRefGoogle Scholar
  17. 17.
    Linszen D, Dingemans P, Van der Does JW, Nugter A, Scholte P, Lenior R, Goldstein MJ (1996) Treatment, expressed emotion and relapse in recent onset schizophrenic disorders. Psychol Med 26:333–342PubMedCrossRefGoogle Scholar
  18. 18.
    Breitborde NJK, López SR, Chang C, Kopelowicz A, Zarate R (2009) Emotional over-involvement can be deleterious for caregivers’ health: Mexican Americans caring for a relative with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 44:716–723PubMedCrossRefGoogle Scholar
  19. 19.
    Boye B, Munkvold OG, Bentsen H, Notland TH, Lersbryggen AB, Oskarsson KH, Uren G, Ulstein I, Lingjaerde O, Malt UF (1998) Pattern of emotional over involvement in relatives of patients with schizophrenia: a stress syndrome analogue? Nord J Psychiatry 52:493–499CrossRefGoogle Scholar
  20. 20.
    Alvarez-Jiménez M, Gleeson JF, Cotton SM, Wade D, Crisp K, Yap MBH, McGorry PD (2010) Differential predictors of critical comments and emotional over-involvement in first-episode psychosis. Psychol Med 40:63–72PubMedCrossRefGoogle Scholar
  21. 21.
    Patterson P, Birchwood M, Cochrane R (2005) Expressed emotion as an adaptation to loss: prospective study in first-episode psychosis. Br J Psychiatry Suppl 48:s59–s64PubMedCrossRefGoogle Scholar
  22. 22.
    Raune D, Kuipers E, Bebbington PE (2004) Expressed emotion at first-episode psychosis: investigating a carer appraisal model. Br J Psychiatry 184:321–326PubMedCrossRefGoogle Scholar
  23. 23.
    Petersen L, Jeppesen P, Thorup A, Abel M-B, Øhlenschlaeger J, Christensen TØ, Krarup G, Jørgensen P, Nordentoft M (2005) A randomised multicentre trial of integrated versus standard treatment for patients with a first episode of psychotic illness. BMJ 331:602PubMedCentralPubMedCrossRefGoogle Scholar
  24. 24.
    McGuffin P (1991) A polydiagnostic application of operational criteria in studies of psychotic illness. Arch Gen Psychiatry 48:764PubMedCrossRefGoogle Scholar
  25. 25.
    Goldberg D, Williams P (1988) A user’s guide to the General Health Questionnaire. NFER-Nelson, WindsorGoogle Scholar
  26. 26.
    Huppert FA, Walters DE, Day NE, Elliott BJ (1989) The factor structure of the General Health Questionnaire (GHQ-30). A reliability study on 6317 community residents. Br J Psychiatry 155:178–185PubMedCrossRefGoogle Scholar
  27. 27.
    Joyce J, Leese M, Szmukler G (2000) The experience of caregiving inventory: further evidence. Soc Psychiatry Psychiatr Epidemiol 35:185–189PubMedCrossRefGoogle Scholar
  28. 28.
    Wiedemann G, Rayki O, Feinstein E, Hahlweg K (2002) The Family Questionnaire: development and validation of a new self-report scale for assessing expressed emotion. Psychiatry Res 109:265–279PubMedCrossRefGoogle Scholar
  29. 29.
    Vaughn CE, Leff J (1976) The measurement of expressed emotion in the families of psychiatric patients. Br J Soc Clin Psychol 15:157–165PubMedCrossRefGoogle Scholar
  30. 30.
    Magaña AB, Goldstein MJ, Karno M, Miklowitz DJ, Jenkins J, Falloon IRH (1986) A brief method for assessing expressed emotion in relatives of psychiatric patients. Psychiatry Res 17:203–212PubMedCrossRefGoogle Scholar
  31. 31.
    Kay SR, Fiszbein A, Opler LA (1987) The positive and negative syndrome scale (PANSS) for schizophrenia. Schizophr Bull 13:261–276PubMedCrossRefGoogle Scholar
  32. 32.
    Santor DA, Ascher-Svanum H, Lindenmayer J-P, Obenchain RL (2007) Item response analysis of the Positive and Negative Syndrome Scale. BMC Psychiatry 7:66PubMedCentralPubMedCrossRefGoogle Scholar
  33. 33.
    Peralta V, Cuesta MJ (1994) Psychometric properties of the positive and negative syndrome scale (PANSS) in schizophrenia. Psychiatry Res 53:31–40PubMedCrossRefGoogle Scholar
  34. 34.
    Bentsen H, Munkvold OG, Notland TH (1996) The interrater reliability of the Positive and Negative Syndrome Scale (PANSS). Int J Methods Psychiatr Res 6:227–235CrossRefGoogle Scholar
  35. 35.
    APA (1987) Diagnostic and statistical manual of mental disorders (DSM-III-R). Washington DCGoogle Scholar
  36. 36.
    Leucht S, Kane JM, Kissling W, Hamann J, Etschel E, Engel RR (2005) What does the PANSS mean? Schizophr Res 79:231–238PubMedCrossRefGoogle Scholar
  37. 37.
    Addington J, McCleery A, Addington D (2005) Three-year outcome of family work in an early psychosis program. Schizophr Res 79:107–116PubMedCrossRefGoogle Scholar
  38. 38.
    Szmukler GI, Herrman H, Bloch S, Colusa S, Benson A (1996) A controlled trial of a counselling intervention for caregivers of relatives with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 31:149–155PubMedCrossRefGoogle Scholar
  39. 39.
    Tennakoon L, Fannon D, Doku V, O’Ceallaigh S, Soni W, Santamaria M, Kuipers E, Sharma T (2000) Experience of caregiving: relatives of people experiencing a first episode of psychosis. Br J Psychiatry 177:529–533PubMedCrossRefGoogle Scholar
  40. 40.
    Barrowclough C, Parle M (1997) Appraisal, psychological adjustment and expressed emotion in relatives of patients suffering from schizophrenia. Br J Psychiatry 171:26–30PubMedCrossRefGoogle Scholar
  41. 41.
    Hooley JM, Campbell C (2002) Control and controllability: beliefs and behaviour in high and low expressed emotion relatives. Psychol Med 32:1091–1099PubMedCrossRefGoogle Scholar
  42. 42.
    Hooley JM, Hiller JB (2000) Personality and expressed emotion. J Abnorm Psychol 109:40–44PubMedCrossRefGoogle Scholar
  43. 43.
    Jansen JE, Lysaker PH, Harder S, Haahr UH, Lyse H-G, Pedersen MB, Trauelsen AM, Simonsen E (2013) Positive and negative caregiver experiences in first-episode psychosis: emotional overinvolvement, wellbeing and metacognition. Psychol Psychother. doi: 10.1111/papt.12014
  44. 44.
    Patterson P, Birchwood M, Cochrane R (2000) Preventing the entrenchment of high expressed emotion in first episode psychosis: early developmental attachment pathways. Aust N Z J Psychiatry 34:S191–S197PubMedCrossRefGoogle Scholar
  45. 45.
    Heikkilä J, Karlsson H, Taiminen T et al (2002) Expressed emotion is not associated with disorder severity in first-episode mental disorder. Psychiatry Res 111:155–165PubMedCrossRefGoogle Scholar
  46. 46.
    McNab C, Haslam N, Burnett P (2007) Expressed emotion, attributions, utility beliefs, and distress in parents of young people with first episode psychosis. Psychiatry Res 151:97–106PubMedCrossRefGoogle Scholar
  47. 47.
    Jansen JE, Harder S, Haahr UH, Lyse H-G, Pedersen MB, Trauelsen AM, Simonsen E (2014) The role of metacognitions in expressed emotion and distress: a study on caregivers of persons with first-episode psychosis. Clin Psychol Psychother. doi: 10.1002/cpp.1907
  48. 48.
    Bentsen H, Boye B, Munkvold OG et al (1996) Emotional overinvolvement in parents of patients with schizophrenia or related psychosis: demographic and clinical predictors. Br J Psychiatry 169:622–630PubMedCrossRefGoogle Scholar
  49. 49.
    Cotton SM, McCann TV, Gleeson JF, Crisp K, Murphy BP, Lubman DI (2013) Coping strategies in carers of young people with a first episode of psychosis. Schizophr Res 146:118–124PubMedCrossRefGoogle Scholar
  50. 50.
    Onwumere J, Kuipers E, Bebbington P, Dunn G, Freeman D, Fowler D, Garety P (2011) Coping styles in carers of people with recent and long-term psychosis. J Nerv Ment Dis 199:423–424PubMedCrossRefGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2014

Authors and Affiliations

  • Jens Einar Jansen
    • 1
    • 2
    Email author
  • Ulrik Helt Haahr
    • 1
    • 3
  • Susanne Harder
    • 2
  • Anne Marie Trauelsen
    • 3
    • 4
  • Hanne-Grethe Lyse
    • 1
  • Marlene Buch Pedersen
    • 1
  • Erik Simonsen
    • 3
    • 4
    • 5
  1. 1.Early Psychosis Intervention CenterRegion Zealand Psychiatry RoskildeRoskildeDenmark
  2. 2.Department of PsychologyUniversity of CopenhagenCopenhagenDenmark
  3. 3.Faculty of Health and Medical SciencesUniversity of CopenhagenCopenhagenDenmark
  4. 4.Psychiatric Research UnitRegion Zealand Psychiatry RoskildeCopenhagenDenmark
  5. 5.Institute of Clinical MedicineUniversity of CopenhagenCopenhagenDenmark

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