Skip to main content

Family burden and functional assessment in the Swedish CLIPS-study: do staff and relatives agree on individuals with psychotic disorders’ functional status?



In this study, the individuals with psychotic disorders’ daily life function was investigated on six dimensions considering their relations to family burden. Functional ratings carried out by relatives and staff were also compared.


Totally 88 relatives, to as many individuals diagnosed with a psychotic disorder, participated in this study. Relatives were to rate their own perceived burden and their ill relatives’ physical functioning, personal care skills, interpersonal relationships, social acceptability, activities, and work skills. The outpatient staff, in all 24 case managers also rated the patients’ functional level on the same assessment tool as did the relatives.


Most dimensions of patients’ everyday functioning were highly correlated to relatives’ burden. The two functional dimensions “interpersonal relationships” and “activities” were best at classifying burden when rated by relatives. Also, comparing independent functional ratings by relatives and staff showed that despite great agreements on most dimensions, they differed significantly on “social acceptability” where relatives rated the function to be poorer and “activities” where relatives rated the function to be better.


Relatives, who perceive individuals with a psychotic disorder to be limited in their ability to interpersonal relationships and limited in their ability to activate in everyday life, are more likely to perceive a higher burden. Even though staff and relatives mainly agree on the patients’ functional ability, they often differ in ratings regarding patients’ social acceptability and ability to activate in everyday life. This should be worth considering in clinical practice as well as in future research.

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


  1. 1.

    Awad AG, Voruganti LNP (2008) The burden of schizoprenia on caregivers—a review. Pharmacoeconomics 26:149–162

    PubMed  Article  Google Scholar 

  2. 2.

    Gutiérrez-Maldonado J, Caqueo-Urízar A, Kavanagh DJ (2005) Burden of care and general health in families of patients with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 40:899–904. doi:10.1007/s00127-005-0963-5

    PubMed  Article  Google Scholar 

  3. 3.

    Roick C, Heider D, Toumi M, Angermeyer MC (2006) The impact of caregivers` characteristics, patients` conditions and regional differences on family burden in schizophrenia: a longitudinal analysis. Acta Psychiatr Scand 114:363–374. doi:10:1111/j.1600-0447.2006.00797.x

    PubMed  Article  CAS  Google Scholar 

  4. 4.

    Angermeyer MC, Kilian R, Wilms H-U, Wittmund B (2006) Quality of life of spouses of mentally ill people. Int J Soc Psychiatry 52:278–285. doi:10.1177/0020764006067186

    PubMed  Article  Google Scholar 

  5. 5.

    Madianos M, Economu M, Dafni O, Koukia E, Palli A, Rogakou E (2004) Family disruption, economic hardship and psychological distress in schizophrenia: can they be measured? Eur Psychiatry 19:408–414. doi:10.1016/j.eurpsy.2004.06.028

    PubMed  Article  CAS  Google Scholar 

  6. 6.

    Rose L, Mallinson RK, Walton-Moss B (2002) A grounded theory of families responding to mental illness. West J Nurs Res 24:16–36. doi:10.1177/019394590202400505

    Google Scholar 

  7. 7.

    Sartorius N (2007) Stigma and mental health. Lancet 370:810–811. doi:10.1016/S0140-6736(07)61245-8

    PubMed  Article  Google Scholar 

  8. 8.

    Hjärthag F, Helldin L, Karilampi U, Norlander T (2010) Illness related components for the family burden of relatives to patients with psychotic illness. Soc Psychiatry Psychiatr Epidemiol 45:275–283. doi:10.1007/s00127-009-0065-x

    PubMed  Article  Google Scholar 

  9. 9.

    Schene AH, van Wijngaarden B, Koeter MWJ (1998) Family caregiving in schizophrenia: domains and distress. Schizophr Bull 24:609–618

    PubMed  CAS  Google Scholar 

  10. 10.

    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 31:137–148

    PubMed  Article  CAS  Google Scholar 

  11. 11.

    Dyck DG, Short R, Vitaliano PP (1999) Predictors of burden and infectious illness in schizophrenia caregivers. Psychosom Med 61:411–419

    PubMed  CAS  Google Scholar 

  12. 12.

    Mitsonis C, Voussoura E, Dimopoulos N, Psarra V, Kararizou E, Latzouraki E, Zervas I, Katsanou MN (2011) Factors associated with caregiver psychological distress in chronic schizophrenia. Soc Psychiatry Psychiatr Epidemiol. doi:10.1007/s00127-010-0325-9 (in press)

  13. 13.

    Provencher HL, Mueser KT (1997) Positive and negative symptom behaviours and caregiver burden in the relatives of persons with schizophrenia. Schizophr Res 26:71–80

    PubMed  Article  CAS  Google Scholar 

  14. 14.

    Koukia E, Madianos MG (2005) Is psychosocial rehabilitation of schizophrenic patients preventing family burden? A comparative study. J Psychiatr Ment Health Nurs 12:415–422

    PubMed  Article  CAS  Google Scholar 

  15. 15.

    Parabiaghi A, Lasalvia A, Bonetto C, Cristofalo D, Marrella G, Tansella M, Ruggeri M (2007) Predictors of changes in caregiving burden in people with schizophrenia: a 3-year follow-up study in a community mental health service. Acta Psychiatr Scand 116:66–76. doi:10.1111/j.1600-0447.2007.01094.x

    Article  Google Scholar 

  16. 16.

    Tarricone I, Leese M, Szmukler GI, Bassi M, Berardi D (2006) The experience of carers of patients with severe mental illness: a comparison between London and Bologna. Eur Psychiatry 21:93–101. doi:10.1016/j.eurpsy.2005.09.012

    PubMed  Article  Google Scholar 

  17. 17.

    Helldin L, Kane JM, Karilampi U, Norlander T, Archer T (2007) Remission in prognosis of functional outcome: a new dimension in the treatment of patients with psychotic disorders. Schizophr Res 93:160–168. doi:10.1016/j.schres.2007.01.014

    PubMed  Article  Google Scholar 

  18. 18.

    Helldin L, Kane JM, Hjärthag F, Norlander T (2009) The importance of cross-sectional remission in schizophrenia for long-term outcome; a clinical prospective study. Schizophr Res 115:67–73. doi:10.1016/j.schres.2009.07.004

    PubMed  Article  Google Scholar 

  19. 19.

    American Psychiatric Association (1994) Diagnostic and statistical manual of mental disorders, 4th edn. American Psychiatric Association, Washington DC

    Google Scholar 

  20. 20.

    Schneider LC, Struening EL (1983) SLOF: a behavioral rating scale for assessing the mentally ill. Soc Work Res Abstr 19:9–21

    PubMed  CAS  Google Scholar 

  21. 21.

    Hjärthag F, Helldin L, Norlander T (2008) Family burden: psychometric properties of the burden inventory for relatives of persons with psychotic disturbances (BIRP). Psychol Rep 103:323–335. doi:10.2466/PR0.103.2.323-335

    PubMed  Google Scholar 

  22. 22.

    Patterson DA, Lee MS (1995) Field trial of the Global Assessment of Functioning Scale-Modified. Am J Psychiatry 152:1386–1388

    PubMed  CAS  Google Scholar 

  23. 23.

    Yamauchi K, Ono Y, Baba K, Ikegami N (2001) The actual process of rating the global assessment of functioning scale. Compr Psychiatry 42:403–409. doi:101053/comp200126268

    PubMed  Article  CAS  Google Scholar 

  24. 24.

    Tang VWK, Leung SK, Lam LC-W (2008) Clinical correlates of the caregiving experience for Chinese caregivers of patients with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 43:720–726. doi:10.1007/s00127-008-0357-6

    PubMed  Article  Google Scholar 

  25. 25.

    Ochoa S, Vilaplana M, Haro JM, Villalta-Gil V, Martínez F, Negredo MC, Casacuberta P, Paniego E, Usall J, Dolz M, Autonell J et al (2008) the NEDES Group. Do needs, symptoms or disability of outpatients with schizophrenia influence family burden? Soc Psychiatry Psychiatr Epidemiol 43:612–618. doi:10.1007/s00127-008-0337-x

    PubMed  Article  Google Scholar 

  26. 26.

    Bowie CR, Twamley EW, Anderson H, Halpern B, Patterson TL, Harvey PD (2007) Self-assessment of functional status in schizophrenia. J Psychiatr Res 41:1012–1018. doi:10.1016/j.jpsychires.2006.08.003

    PubMed  Article  Google Scholar 

  27. 27.

    Perlick DA, Rosenheck RA, Kaczynski R, Swartz MS, Cañive JM, Lieberman JA (2006) Components and correlates of family burden in schizophrenia. Psychiatr Serv 57:1117–1125

    PubMed  Article  Google Scholar 

  28. 28.

    Sjöblom L-M, Pejlert A, Asplund K (2005) Nurses view of the family in psychiatric care. J Clin Nurs 14:562–569

    PubMed  Article  Google Scholar 

  29. 29.

    Winefield HR, Burnett PL (1996) Barriers to alliance between family and professional caregivers in chronic schizophrenia. J Ment Health 5:223–232

    Article  Google Scholar 

  30. 30.

    Foldemo A, Ek A-C, Bogren L (2004) Needs in outpatients with schizophrenia, assessed by the patients themselves and their parents and staff. Soc Psychiatry Psychiatr Epidemiol 39:381–385. doi:10.1007/s00127-004-0750-8

    PubMed  Article  Google Scholar 

  31. 31.

    Leifker FR, Bowie CR, Harvey PD (2009) Determinants of everyday outcomes in schizophrenia: The influences of cognitive impairment, functional capacity, and symptoms. Schizophr Res 115:82–87. doi:10.1016/j.schres.2009.09.004

    PubMed  Article  Google Scholar 

  32. 32.

    Kozma CM, Dirani RG, Canuso CM, Mao L (2010) Predicting hospital admission and discharge with symptom or function scores in patients with schizophrenia: pooled analysis of a clinical trial extension. Ann Gen Psychiatry 9:24. doi:10.1186/1744-859X-9-24

    PubMed  Article  Google Scholar 

  33. 33.

    Cohen AN, Glynn SM, Murray-Swank AB, Barrio C, Fischer EP, McCutcheon SJ, Perlick DA, Rotondi AJ, Sayers SL, Sherman MD, Dixon LB (2008) The family forum: directions for the implementation of family psychoeducation for severe mental illness. Psychiatr Serv 59:40–48

    PubMed  Article  Google Scholar 

  34. 34.

    Adewuya AO, Owoeye OA, Erinfolami, AR (2011) Psychopathology and subjective burden amongst primary caregivers of people with mental illness in South-Western Nigeria. Soc Psychiatry Psychiatr Epidemiol. doi:10.1007/s00127-010-0293-0 (in press)

  35. 35.

    Ohaeri JU (2003) The burden of caregiving in families with a mental illness: a review of 2002. Curr Opin Psychiatry 16:457–465. doi:10.1097/01.yco.0000079212.36371.c0

    Google Scholar 

  36. 36.

    Harvey PD, Helldin L, Bowie CR, Heaton RK, Olsson A-K, Hjärthag F, Norlander T, Patterson TL (2009) Performance-based measurement of functional disability in schizophrenia: a cross-national study in the United States and Sweden. Am J Psychiatry 166:821–827. doi:101176/appiajp200909010106

    PubMed  Article  Google Scholar 

Download references


This study was supported by unrestricted grants from Janssen-Cilag AB, Sollentuna, Sweden. Educational grants were held from the Research & Development Council, West Sweden Region. Authors also acknowledge the excellent technical assistance of Veronica Ahl, Britt-Marie Hansson, Ruth Johansson, and Maivor Olsson.

Author information



Corresponding author

Correspondence to Fredrik Hjärthag.

Rights and permissions

Reprints and Permissions

About this article

Cite this article

Hjärthag, F., Helldin, L., Olsson, AK. et al. Family burden and functional assessment in the Swedish CLIPS-study: do staff and relatives agree on individuals with psychotic disorders’ functional status?. Soc Psychiatry Psychiatr Epidemiol 47, 581–587 (2012).

Download citation


  • Psychotic disorder
  • Family burden
  • Function
  • SLOF
  • BIRP