Validation of the subjective and objective family burden interview (SOFBI/ECFOS) in primary caregivers to adults with intellectual disabilities living in the community

Journal of Intellectual Disability Research

Volumn 51, Issue 11, 2007, Pages 892-901

  Martorell, Almudena ^a,b   Pereda, A ^b   Salvador Carulla, L ^c   Ochoa, S ^d   Ayuso Mateos, J L ^a  

^a HOSPITAL UNIVERSITARIO DE LA PRINCESA   (Spain)

^b Fundaci&oavcute n Carmen Pardo Valcarce   (Spain)

^c Asociacion Cientifica PSICOST   (Spain)

^d PARC SANITARI SANT JOAN DE DÉU   (Spain)

Author keywords

Burden of care; Families; Intellectual disabilities; Interview; Validation

Indexed keywords

ARTICLE; CAREGIVER BURDEN; CLINICAL ASSESSMENT TOOL; COMMUNITY LIVING; CONSTRUCT VALIDITY; CONTROLLED STUDY; CRONBACH ALPHA COEFFICIENT; DISABILITY; FACTORIAL ANALYSIS; FAMILY; FEASIBILITY STUDY; FEMALE; HUMAN; INTELLECTUAL IMPAIRMENT; INTERNAL CONSISTENCY; INTERRATER RELIABILITY; INTERVIEW; KAPPA STATISTICS; MALE; PSYCHOMETRY; QUANTITATIVE ANALYSIS; SPAIN; SUBJECTIVE AND OBJECTIVE FAMILY BURDEN INTERVIEW; TEST RETEST RELIABILITY; VALIDATION PROCESS;

ACTIVITIES OF DAILY LIVING; ADOLESCENT; ADULT; CAREGIVERS; COST OF ILLNESS; FEASIBILITY STUDIES; FEMALE; HUMANS; INTELLIGENCE; INTERVIEW, PSYCHOLOGICAL; MALE; MENTAL RETARDATION; PSYCHOMETRICS; QUESTIONNAIRES; REHABILITATION, VOCATIONAL; REPRODUCIBILITY OF RESULTS; SOCIOECONOMIC FACTORS; SPAIN;

EID: 34848828304     PISSN: 09642633     EISSN: 13652788     Source Type: Journal    
DOI: 10.1111/j.1365-2788.2007.00962.x     Document Type: Article

References (28)

1. Agustench C., Martinez A. & Cabases J. M. (2000) Objective and subjective family burden in schizophrenia. Gac Sanit 14 (Suppl. 1), 6.
2. Consejería de Familia y Asuntos Sociales (2004) II. Plan de Acción para personas cou discapacidad de la Comunidad de Madrid 2005-2008. Comunidad de Madrid, Madrid.
3. Greenberg J. S., Seltzer M. M., Krauss M. W. & Kim H.-W. (1997) The differential effects of social support on the psychological well-being of aging mothers of adults with mental illness or mental retardation. Family Relations 46, 383-94.
4. Hoenig J. & Hamilton M. W. (1966) Elderly psychiatric patients and the burden on the household. Psychiatric Neurology (Basel) 152, 281-93.
5. Kramer M. S. & Feinstein A. R. (1981) Clinical biostatistics: LIV. The biostatistics of concordance. Clinical and Pharmacology and Therapeutics 29, 111-23.
6. Lakin K. C., Prouty R. & Coucouvanis K. (2004) U.S. residential support recipients with ID/DD now exceed 400,000 after 30% increase in past decade: Increases evident in all states. Mental Retardation 42, 490-3.
7. Luescher J. L., Dede D. E., Gitten J. C., Fennell E. & Maria B. L. (1999) Parental burden, coping, and family functioning in primary caregivers of children with Joubert syndrome. Journal of Child Neurology 14, 642-8.
8. Maes B., Broekman T. G., Dosen A. & Nauts J. (2003) Caregiving burden of families looking after persons with intellectual disability and behavioural or psychiatric problems. Journal of Intellectual Disability Research 47, 447-55.
9. McCallion P., McCarron M. & Force L. T. (2005) A measure of subjective burden for dementia care: The caregiving difficulty scale -intellectual disability. Journal of Intellectual Disability Research 49, 365-71.
10. McCarron M., Gill M., Lawlor B. & Beagly C. (2002) A pilot study of the reliability and validity of the Caregiver Activity Survey -Intellectual Disability (CAS-ID). Journal of Intellect Disability Research 46, 605-12.
11. Martínez A., Nadal S., Beperet M., Mendióroz P. & Grupo P. (2000) Sobrecarga de los cuidadores familiares de pacientes con esquizofrenia: Factores determinantes. Anales del sistema sanitario de. Navarra 23 (Suppl. 1), 101-10.
12. May D. & Hogg J. (2000) Continuity and change in the use of residential services by adults with intellectual disability: The Aberdeen cohort at mid-life. Journal of Intellectual Disability Research 44, 68-80.
13. Nachshen J. S., Woodford L. & Minnes P. (2003) The family stress and coping interview for families of individuals with developmental disabilities: A lifespan perspective on family adjustment. Journal of Intellectual Disability Research 47 (Pt 4-5), 285-90.
14. Ravens-Sieberer U., Morfeld M., Stein R. E., Jessop D. J., Bullinger M. & Thyen U. (2001) [The testing and validation of the German version of the impact on family scale in families with children with disabilities]. Psychotherapie, Psychosomatik, Medizinische Psychologie 51, 384-93.
15. Salvador-Carulla L. & Martínez A. (2001) La carga familiar en las discapacidades psíquicas: La experiencia Psicost. In: Deficiencia Mental y Familia (ed. J. Gafo), pp. 75-101. Publicaciones de la Universidad Pontificia de Comillas, Madrid.
16. Salvador-Carulla L. & Salas D. (2001) Assessment instruments in psychiatry: Description and psychometric properties. In: Mental Health Outcome Measures 2nd edn (eds M. Tansella & G. Thornicroft), pp. 228-57. Gaskell, Londres.
17. Schene A. H. (1990) Objective and subjective dimensions of family burden. Towards an integrative framework for research. Social Psychiatry and Psychiatric Epidemiology 25, 289-97.
18. Sobsey D. & Calder P. (2006) Supports for Families of Children with Disabilities State of the Evidence Review. Annotated Bibliography. Alberta Centre for Child, Family and Community Research. Available at: http://www.ualberta.ca/~jpdasddc/famsupport/final.htm (Last access 30 July 2006).
19. Spitznagel E. L. & Helzer J. E. (1985) A proposed solution to the base rate problem in the kappa statistic. Archives of General Psychiatry 42, 725-8.
20. SPSS Inc. (2004) Statistical Package for Social Science. SPSS Inc., Ireland.
21. Stata Corp. (2003) Stata Statistical Software release 8.0. Stata Corp., USA.
22. Tessler R. C. & Gamache G. M. (1996) The family burden interview schedule - short form. In: Outcome Assessment in Clinical Practice (eds L. L. I. Sederer & B. Dickey), pp. 110-12. Willians & Wilkins, Baltimore, MD.
23. Thyen U., Sperner J., Morfeld M., Meyer C. & Ravens-Sieberer U. (2003) Unmet health care needs and impact on families with children with disabilities in Germany. Ambulatory Pediatrics 3, 74-81.
24. Wechsler D. & Kaufman A. (1998) WAIS-III Escala de Inteligencia de Wechsler Para Adultos III (c). TEA Ed, Madrid.
25. Wels P. & Robbroeckx L. (1996) NVOS: Nijmeegse Vragenlijst voor de Opvoedings-Situatie [Nijmeegse Family Situation Questionnaire]. Handleiding en Test. Swets & Zeitlinger, Lisse.
26. White N. & Hastings R. P. (2004) Social and professional support for parents of adolescents with severe intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 17, 181-90.
27. World Health Organization (1993) The ICD-10 Classification of Mental and Behavioural Disorders: Diagnostic Criteria for Research. WHO, Geneva.
28. World Health Organization (2000) WHO Disability Assessment Schedule (WHO DAS-II). WHO, Geneva.