Skip to main content

Pervasive refusal syndrome among inpatient asylum-seeking children and adolescents: a follow-up study

Abstract

Background

Pervasive refusal syndrome (PRS) is a rare but severe condition, characterised by social withdrawal and a pervasive active refusal in terms of eating, mobilisation, speech and personal hygiene. PRS has been proposed as a new diagnostic entity in child and adolescent psychiatry, although the diagnostic criteria are debated. In the past 10 years there has been an increase in PRS symptoms among asylum-seeking children and adolescents in Sweden. Here, we describe five cases of PRS among asylum-seeking children and adolescents.

Method

Three females and 2 males, 7–17 years of age with the clinical picture of PRS, treated as inpatients at the Department of Child and Adolescent Psychiatry, Malmö, Sweden, 2002–2010, were analysed on the basis of their medical records. Subjects were diagnosed using previously suggested criteria for PRS. At follow-up, a semi-structured interview focusing on the inpatient stay and current status was performed. The subjects were assessed with Global Assessment of Functioning (GAF) and self-rating questionnaires regarding depression and post-traumatic stress disorder (PTSD).

Results

The pattern of refusal varied among the five subjects. All subjects originated from former Soviet republics, indicating a possible cultural factor. Mean period of inpatient treatment was 5 months. All subjects received intense nursing and were treated with nasogastric tube feeding. Parents were involved and were given support and instructions. All subjects gradually improved after receiving permanent residency permits. Depression and PTSD were co-morbid states. At follow-up, 1–8 years after discharge, all subjects were recovered.

Conclusion

Although a severe condition, our five cases suggest a good prognosis for PRS among asylum-seeking children and adolescents.

This is a preview of subscription content, access via your institution.

References

  1. 1.

    Lask B, Britten C, Kroll L, Magagna J, Tranter M (1991) Children with pervasive refusal. Arch Dis Child 66(7):866–969

    PubMed  Article  CAS  Google Scholar 

  2. 2.

    Jaspers T, Hanssen GM, van der Valk JA, Hanekom JH, van Well GT, Schieveld JN (2009) Pervasive refusal syndrome as part of the refusal–withdrawal–regression spectrum: critical review of the literature illustrated by a case report. Eur Child Adolesc Psychiatry 18(11):645–651

    PubMed  Article  Google Scholar 

  3. 3.

    Thompson SL, Nunn KP (1997) The pervasive refusal syndrome: the RAHC experience. Clin Child Psychol Psychiatry 2:145–165

    Article  Google Scholar 

  4. 4.

    American Psychiatric Association. DSM-5 Development. Psych. Org http://www.dsm5.org. Accessed 15 May 2012

  5. 5.

    Lask B (2004) Pervasive refusal syndrome. Adv Psychiatr Treat 10:153–159

    Article  Google Scholar 

  6. 6.

    Nunn KP, Sl Thompson (1996) Pervasive refusal syndrome: learned helplessness and hopelessness. Clin Child Psychol Psychiatry 1:121–132

    Article  Google Scholar 

  7. 7.

    Bodegård G (2005) Life threatening loss of function in refugee children: another expression of pervasive refusal syndrome? Clin Child Psychol Psychiatry 10:337–350

    Article  Google Scholar 

  8. 8.

    Wright B, Beverley D (2011). Pervasive refusal syndrome. Clin Child Psychol Psychiatry. doi:10.1177/1359104511403680 (6 July, Epub ahead of print) 6 July

  9. 9.

    Guirguis S, Reid C, Rao S, Grahame V, Kaplan C (2011) Follow-up study of four cases of pervasive refusal syndrome. Eur Child Adolesc Psychiatry 20(5):271–274

    PubMed  Article  Google Scholar 

  10. 10.

    Christensen AM, Thelle T (2011). Afvisningssyndrom hos en 12-årig dreng (Refusal syndrome in a 12-year-old boy). Ugeskr Laeger 18;173(16–17):1214–1215

    Google Scholar 

  11. 11.

    Bodegård G (2004) Asylsökande flyktingbarn utvecklar livshotande funktionsbortfall (Asylum-seeking children develop a life-threatening lack of function). Läkartidningen 101:1696–1699

    PubMed  Google Scholar 

  12. 12.

    Bodegård G (2005) Pervasive loss of function in asylum-seeking children in Sweden. Acta Paediatr 94(12):1706–1707

    PubMed  Article  Google Scholar 

  13. 13.

    Aronsson B, Wiberg C, Sandstedt P, Hjern A (2009) Asylum-seeking children with severe loss of activities of daily living: clinical signs and course during rehabilitation. Acta Paediatr 98(12):1977–1981

    PubMed  Article  CAS  Google Scholar 

  14. 14.

    Von Folsach LL, Montgomery E (2006) Pervasive refusal syndrome among asylum-seeking children. Clin Child Psychol Psychiatry 11(3):457–473

    Article  Google Scholar 

  15. 15.

    Heptinstall E, Sethna V, Taylor E (2004) PTSD and depression in refugee children: associations with pre-migration trauma and post-migration stress. Eur Child Adolesc Psychiatry 13(6):373–380

    PubMed  Article  Google Scholar 

  16. 16.

    American Psychiatric Association (2000) Diagnostic and statistical manual of mental disorders—DSM-IV-TR. American Psychiatric Association, Washington, DC

    Google Scholar 

  17. 17.

    Bondolfi G, Jermann F, Rouget BW, Gex-Fabry M, McQuillan A, Dupont-Willemin A, Aubry JM, Nguyen C (2011) Self- and clinician-rated Montgomery–Asberg Depression Rating Scale: evaluation in clinical practice. J Affect Disord 121(3):268–272

    Article  Google Scholar 

  18. 18.

    McDonald SD, Calhoun PS (2010) The diagnostic accuracy of the PTSD checklist: a critical review. Clin Psychol Rev 30(8):976–987

    PubMed  Article  Google Scholar 

  19. 19.

    Personal contact with Hans Nidsjö, statistical administrator. Swedish Migration Board, Planning and Control, Norrköping, Sweden. (hans.nidjso@migrationsverket.se)

  20. 20.

    Jans T, Ball J, Preiss M, Haberhausen M, Warnke A, Renner TJ (2011) Pervasive refusal syndrome. Three German cases provide further illustration. Z Kinder Jugendpsychiatr Psychother 39(5):351–358 (quiz 359)

    PubMed  Article  Google Scholar 

  21. 21.

    Joelsson L, Dahlin K (2005). Asylprocess grogrund för apati hos vissa barn (Asylum-seeking process a breeding ground for apathy among certain children. A negative decision concerning the residence permit is often a triggering factor). Läkartidningen 102(48):3646–3650

  22. 22.

    Ahmadi N (2006). Asylsökande barn med uppgivenhetssymtom—trauma, kultur, asylprocess (Asylum-seeking children with symptoms of resignation—trauma, culture, asylum process). Statens offentliga utredningar SOU 2006:49. Edita, Stockholm

  23. 23.

    Robjant K, Hassan R, Katona C (2009) Mental health implications of detaining asylum seekers: systematic review. Br J Psychiatry 194(4):306–312

    PubMed  Article  Google Scholar 

  24. 24.

    Swedish Migration Board (2009). Migrationsverket statistik 2009-02-18, Tabell 1 2008 (Swedish Migration Board, Statistics 2009-02-18, Table 1)

  25. 25.

    Ascher H, Gustavsson T (2008). Clearing conference about children with refusal symptoms. Läkartidningen 9–15;105(1–2):31–33

  26. 26.

    Markowitsch HJ (2003) Psychogenic amnesia. Neuroimage 20(Suppl 1):S132–S138

    PubMed  Article  Google Scholar 

  27. 27.

    Söndergaard HP, Kushnir MM, Aronsson B, Sandstedt P, Bergquist J (2012) Patterns of endogenous steroids in apathetic refugee children are compatible with long-term stress. BMC Res Notes 19(5):186

    Article  Google Scholar 

Download references

Acknowledgments

We wish to express our gratitude towards the subjects and their families for their participation in the study. We also wish to thank Leslie Walke for linguistic help. Grants from Kronoberg County Council, FoU Kronoberg, Växjö, Sweden, reference number 24/2011, were received.

Conflict of interest

The authors declare that they have no conflict of interest.

Author information

Affiliations

Authors

Corresponding author

Correspondence to Carl-Magnus Forslund.

Appendix

Appendix

Part I: questions concerning inpatient stay

  1. 1.

    Do you remember the time at the hospital?

  2. 2.

    How would you describe your inpatient stay?

  3. 3.

    Could you think of any factors contributing to your illness?

  4. 4.

    Do you remember the onset as a gradual or rapid process?

  5. 5.

    Do you remember your parents’ reaction to your illness?

  6. 6.

    In what way did your parents affect you during your inpatient stay?

  7. 7.

    What is your opinion of the care given at the ward?

  8. 8.

    Did you feel anything was lacking in the treatment?

  9. 9.

    Was there anything regarding treatment that could have been better?

  10. 10.

    How did you experience the treatment with stimulation of the senses?

  11. 11.

    Do you remember any factors contributing to your improvement?

  12. 12.

    Do you think of your improvement as a gradual or rapid process?

  13. 13.

    Was your permanent residency permit an important factor contributing to your recovery?

  14. 14.

    Do you have any advice to us as care providers to consider next time we treat a patient with Pervasive Refusal Syndrome?

Part II: questions on current state

  1. 1.

    How have you felt during the past 2 weeks?

  2. 2.

    Are you happy with your social environment?

  3. 3.

    Do you have an occupation or are you studying?

  4. 4.

    What do you do in your spare time?

  5. 5.

    Do you have any somatic or psychiatric symptoms?

  6. 6.

    Have you had any subsequent contact with any care providers after discharge?

  7. 7.

    If so, what treatment did you receive?

  8. 8.

    Do you have any current contact with a psychiatric department?

  9. 9.

    How do you see your future?

Rights and permissions

Reprints and Permissions

About this article

Cite this article

Forslund, CM., Johansson, B.A. Pervasive refusal syndrome among inpatient asylum-seeking children and adolescents: a follow-up study. Eur Child Adolesc Psychiatry 22, 251–258 (2013). https://doi.org/10.1007/s00787-012-0341-2

Download citation

Keywords

  • Pervasive refusal syndrome
  • Asylum-seeking
  • Adolescents
  • Follow-up
  • Prognosis