title: Burden of informal care giving to patients with psychoses: a descriptive and methodological study.
abstract: BACKGROUND
  There is a lack of studies of the size of burden associated with informal care giving              in psychosis.
  
  
  OBJECTIVE
  To evaluate the objective and subjective burden of informal care giving to patients              with psychoses, and to compare a diary and recall method for assessments of objective              burden.
  
  
  METHODS
  Patients and their informal caregivers were recruited from nine Swedish psychiatric              outpatient centres. Subjective burden was assessed at inclusion using the CarerQoL and              COPE index scales. The objective burden (time and money spent) was assessed by the              caregivers daily using diaries over four weeks and by recall at the end of weeks 1 and              2.
  
  
  RESULTS
  One-hundred and seven patients (53% females; mean age 43 ± 11) and 118 informal              caregivers (67%; 58 ± 15 years) were recruited. Informal caregivers spent 22.5              hours/week and about 14% of their gross income on care-related activities. The time              spent was underestimated by two to 20 hours when assessed by recall than by daily diary              records. The most prominent aspects of the subjective burden were mental problems.
  
  
  CONCLUSIONS
  Despite a substantial amount of time and money spent on care giving, the informal              caregivers perceived the mental aspects of burden as the most troublesome. The informal              caregiver burden is considerable and should be taken into account when evaluating              effects of health care provided to patients with psychoses.
authors.affiliation: Department of Clinical Neurosciences, Stockholm Centre of Psychiatric Research, Karolinska Institutet, Stockholm, Sweden. lena.flyckt@ki.se
authors.forename: Lena
authors.initials: L
authors.lastname: Flyckt
authors.forename: Anna
authors.initials: A
authors.lastname: Löthman
authors.forename: Leif
authors.initials: L
authors.lastname: Jörgensen
authors.forename: Anders
authors.initials: A
authors.lastname: Rylander
authors.forename: Thomas
authors.initials: T
authors.lastname: Koernig
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000553:Ambulatory Care / Q000191:economics / Q000379:methods / Q000523:psychology; D017028:Caregivers / Q000191:economics / Q000523:psychology; D017281:Cost of Illness; D005260:Female; D006801:Humans; D008297:Male; D008499:Medical Records / Q000592:standards / Q000706:statistics & numerical data; D008875:Middle Aged; D005791:Patient Care / Q000191:economics / Q000523:psychology; D017064:Process Assessment, Health Care / Q000191:economics / Q000379:methods / Q000592:standards; D011618:Psychotic Disorders / Q000191:economics*; D013315:Stress, Psychological / Q000209:etiology / Q000523:psychology; D011795:Surveys and Questionnaires; D013548:Sweden; D013997:Time Factors
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