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Family burden and functional assessment in the Swedish CLIPS-study: Do staff and relatives agree on individuals with psychotic disorders' functional status?
Karlstad University, Faculty of Economic Sciences, Communication and IT, Department of Psychology.ORCID iD: 0000-0002-1088-9793
Karlstad University, Faculty of Economic Sciences, Communication and IT, Department of Psychology. NU Healthcare, Dept Psychiat, S-46185 Trollhattan, Sweden.
Karlstad University, Faculty of Economic Sciences, Communication and IT, Department of Psychology. NU Healthcare, Dept Psychiat, S-46185 Trollhattan, Sweden.
Karlstad University, Faculty of Economic Sciences, Communication and IT, Department of Psychology.
2012 (English)In: Social Psychiatry and Psychiatric Epidemiology, ISSN 0933-7954, E-ISSN 1433-9285, Vol. 47, no 4, p. 581-587Article in journal (Refereed) Published
Abstract [en]

PURPOSE:

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.

METHODS:

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.

RESULTS:

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.

CONCLUSIONS:

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.

Place, publisher, year, edition, pages
2012. Vol. 47, no 4, p. 581-587
National Category
Psychology
Research subject
Psychology
Identifiers
URN: urn:nbn:se:kau:diva-7307DOI: 10.1007/s00127-011-0358-8ISI: 000301786400008PubMedID: 21347751OAI: oai:DiVA.org:kau-7307DiVA, id: diva2:410308
Available from: 2011-04-13 Created: 2011-04-13 Last updated: 2018-01-22Bibliographically approved
In thesis
1. Screening Family Burden in Clinical Practice: The development of a new instrument and investigation of its correlates to psychotic disorders
Open this publication in new window or tab >>Screening Family Burden in Clinical Practice: The development of a new instrument and investigation of its correlates to psychotic disorders
2011 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The primary purpose of this thesis is to develop a short and user-friendly instrument for the assessment of family burden caused by psychotic disorders. A secondary purpose is to further investigate variables that might be linked to an increased burden. Of these variables, patients’ reduced functioning will be addressed in more detail. As a final purpose, ratings of disorder-related variables carried out by staff will be compared to similar ratings carried out by relatives. These different purposes are investigated in five studies.

In the first study (Paper I) the instrument Burden Inventory for Relatives to persons with Psychotic disturbances (BIRP) is created. This new screening instrument contains ten statements and shows good psychometrical properties for those dimensions that are investigated. In the second study (Paper II) results show that increased family burden can be tied to patients’ impaired functioning as well as to patients’ higher self ratings regarding distress. In the third study (Paper III) different parts of patients’ observable behavioral functioning are investigated and results show that most functional dimensions correlate with family burden. Also staff ratings of function are compared with relatives’ ratings and despite similar patterns in ratings there are differences. In the fourth study (Paper IV) demographic variables are studied and results show that only higher age and fewer contact hours correlate significantly with lower burden.  Also, the BIRP instrument shows good stability. In the fifth study (Paper V) correlations with family burden are generally stronger for relatives’ own ratings of illness activity as compared to symptom ratings made by staff. Relatives’ ratings of illness activity do not correlate significantly with staff symptom ratings on all instruments used.

The conclusions of this thesis are that the new screening instrument BIRP can be considered a good instrument to use in regular clinical practice in order to measure relatives’ burden in connection to psychotic disorders. Also, the thesis contributes with knowledge about what in the psychotic disorder and which demographic factors might be linked to an increase of family burden. Findings also indicate that it matters who does the rating of a disorder-related variable. Furthermore, in this thesis a theoretical framework for family burden is presented.

 

Abstract [sv]

Det primära syftet med denna avhandling är att utveckla ett kort och användarvänligt instrument för att mäta anhörigbörda orsakad av psykossjukdom. Ett andra syfte är att ytterligare undersöka variabler som kan vara kopplade till en ökad börda. Av dessa variabler kommer patientens reducerade funktion att studeras mera i detalj. Som ett sista syfte kommer skattningar kopplade till sjukdomen gjorda av personal att jämföras med liknande skattningar gjorda av anhöriga. Dessa olika syften undersöks i fem studier.

I den första studien (Paper I) skapas instrumentet “Burden Inventory for Relatives to persons with Psychotic disturbances” (BIRP). Detta nya översiktsinstrument baseras på tio påståenden och uppvisar goda psykometriska egenskaper för de undersökta dimensionerna. I den andra studien (Paper II) visar resultaten att ökad anhörigbörda kan kopplas till patientens hämmade funktion samt till högre självskattningar hos patienterna gällande upplevda besvär. I den tredje studien (Paper III) undersöks olika delar av patientens observerbara funktionella beteende och resultatet visar att de flesta funktionella dimensionerna korrelerar med anhörigbörda. Även personalskattningar av funktionen jämförs med de anhörigas skattningar och trots liknande mönster i skattningarna finns ändå skillnader. I den fjärde studien (Paper IV) studeras demografiska variabler och resultaten visar att endast högre ålder samt färre timmars kontakt korrelerar signifikant med en lägre börda. Vidare uppvisar instrumentet BIRP en god stabilitet. I den femte studien (Paper V) visar sig korrelationerna till anhörigbörda generellt vara starkare för de anhörigas egna skattningar av sjukdomsaktivitet jämfört med symptomskattningar gjorda av personal. Anhörigas skattningar av sjukdomsaktiviteten korrelerar inte signifikant med personalens symptomskattningar på alla instrument som används.

Slutsatserna som kan dras utifrån denna avhandling är att det nya översiktsinstrumentet BIRP kan anses vara ett bra instrument att använda i reguljär klinisk verksamhet i syfte att mäta anhörigas börda till följd av psykossjukdom. Dessutom bidrar avhandlingen med kunskap gällande vad i psykossjukdomen och vilka demografiska faktorer som skulle kunna kopplas till en ökad anhörigbörda. Resultat indikerar även att det är av betydelse vem det är som gör skattningen av den sjukdomsrelaterade variabeln. Utöver detta presenterar denna avhandling även ett teoretiskt ramverk gällande anhörigbörda.

Place, publisher, year, edition, pages
Karlstad: Karlstad University, 2011. p. 79
Series
Karlstad University Studies, ISSN 1403-8099 ; 2011:22
Keywords
Family burden, Psychotic disorder, Schizophrenia, Psychometrics, Assessment, BIRP, Function, Cross-Sectional Remission
National Category
Psychology Psychiatry
Research subject
Psychology
Identifiers
urn:nbn:se:kau:diva-7295 (URN)978-91-7063-354-6 (ISBN)
Public defence
2011-06-10, Sjöströmsalen, Karlstads Universitet, Karlstad, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2011-05-10 Created: 2011-04-11 Last updated: 2015-09-02Bibliographically approved

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