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Illness Related Components for the Family Burden of Relatives to Patients with Psychotic Illness
Karlstad University, Faculty of Economic Sciences, Communication and IT, Department of Psychology. (Psykologi)ORCID iD: 0000-0002-1088-9793
Karlstad University, Faculty of Economic Sciences, Communication and IT, Department of Psychology.
Department of Psychology, Göteborg University.
Karlstad University, Faculty of Economic Sciences, Communication and IT, Department of Psychology.
2010 (English)In: Social Psychiatry and Psychiatric Epidemiology, ISSN 0933-7954, E-ISSN 1433-9285, Vol. 45, no 2, p. 275-283Article in journal (Refereed) Published
Abstract [en]

Background: Previous research has shown that symptom severity often implies an increased family burden. Few other illness related variables have, however, been investigated in this context. This study investigates how family burden is affected by symptom, function, and cognition, as well as how the patient perceives his/her illness and quality of life. Method: A total of 99 relatives, to as many patients diagnosed with psychosis and with their illness at a stable level, participated in this study. The relatives estimated their perceived burden, the patients rated the distress caused by their illness as well as the quality of their lives, and the care staff rated the patients’ symptom and function as well as tested their cognitive abilities. Results: Increased family burden can be tied to the patients’ increased symptom severity, to their impaired functioning as well as to the patients’ higher self ratings regarding distress. The family burden is also connected to the patient’s reduced working memory and reduced executive functioning, but this connection is not totally clear and should be further investigated. Of the variables that the patients were rated on, it was the overall functional ability measured with GAF that had the single most impact on perceived family burden. Conclusions: To control illness related variables such as symptoms, impaired functioning, impaired working memory and executive functioning, as well as the patients’ own experiences of distress, is important in order to lessen the burden for the relatives. All aspects of family burden are, however, not explained by these factors, which is why further research within this realm is required.

Place, publisher, year, edition, pages
Springer , 2010. Vol. 45, no 2, p. 275-283
Keywords [en]
Family burden, Outcome assessment, BIRP, Psychotic illness, Schizophrenia
National Category
Psychology
Research subject
Psychology
Identifiers
URN: urn:nbn:se:kau:diva-3268DOI: 10.1007/s00127-009-0065-xISI: 000274469200016OAI: oai:DiVA.org:kau-3268DiVA, id: diva2:133754
Projects
Clinical Long-term Investigation of Psychosis in Sweden, CLIPS
Note

Vid publiceringen av Fredrik Hjärthags licentiatuppsats, var denna artikel inte publicerad.

Available from: 2009-01-14 Created: 2009-01-14 Last updated: 2017-12-14Bibliographically approved
In thesis
1. Assessing Family Burden of Psychotic Illness in Clinical Practice
Open this publication in new window or tab >>Assessing Family Burden of Psychotic Illness in Clinical Practice
2009 (English)Licentiate thesis, comprehensive summary (Other academic)
Abstract [en]

The purpose of this thesis was twofold. One purpose was to create a user-friendly instrument to be used in regular clinical practice to collect information regarding family burden of psychotic illness. The second purpose was to study how family burden could be linked to the patients’ level of functioning, the patients’ cognition and the patients’ own experience of their illness.    

Two studies were conducted. In the first study (Paper I) the instrument Burden Inventory for Relatives to persons with Psychotic disturbances (BIRP) was created. This instrument contained ten statements and showed good psychometrical properties for those dimensions that were investigated. The instrument measures three dimensions of experienced family burden: practical burden, emotional burden, and the relatives’ own health. In the second study (Paper II) the second part of this thesis purpose was investigated. Results showed that increased family burden could be tied to the patients’ impaired functioning as well as to the patients’ higher self ratings regarding distress. The cognitive connection to family burden is not totally clear though, and should be further investigated. A theoretical model which explains the experienced family burden of psychotic illness is also presented within this thesis.

The conclusions of this thesis are that BIRP is a useful instrument in regular clinical practise for measuring experienced family burden, and that the patients’ level of functioning and the patients’ own experience of their illness were correlated to the family burden experienced.

Place, publisher, year, edition, pages
Karlstad: Karlstads universitet, 2009. p. 65
Series
Karlstad University Studies, ISSN 1403-8099 ; 2009:5
Keywords
Family Burden, Psychotic Illness, Psychometrics, BIRP, Function, Cognition, Theoretic model
National Category
Psychology
Research subject
Psychology
Identifiers
urn:nbn:se:kau:diva-3270 (URN)978-91-7063-233-4 (ISBN)
Presentation
2009-03-06, Karlstads universitet, Karlstad, 10:00 (Swedish)
Opponent
Supervisors
Projects
Clinical Long-term Investigation of Psychosis in Sweden, CLIPS
Available from: 2009-02-16 Created: 2009-01-14 Last updated: 2015-09-02Bibliographically approved
2. 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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Hjärthag, FredrikNorlander, Torsten

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