title: A family booklet about comfort care in advanced dementia: three-country evaluation.
abstract: OBJECTIVE
  To evaluate a booklet on comfort care in dementia from the perspective of family with relevant experience, and assess nursing home resident and family factors associated with evaluations.
  
  
  METHODS
  Retrospective study.
  
  
  METHODS
  Long term care facilities in French-speaking Canada, and the Netherlands and Italy.
  
  
  METHODS
  Bereaved family (n = 138).
  
  
  METHODS
  An 8-item scale assessed the booklet's acceptability. Usefulness was rated on a 0 to 10 scale, and perceived usefulness referred to usefulness if family had had the booklet during the resident's stay. Families indicated preferred ways of obtaining, and the most appropriate time to get the booklet.
  
  
  RESULTS
  Almost all families (94%) perceived the booklet as useful. Canadian and Dutch families evaluated the booklet's contents and format favorably, whereas Italian families' evaluations were less favorable. Almost all families endorsed roles for physicians or nurses and about half additionally accepted availability through own initiative, in print or through the Internet. Preference of timing was highly variable. Better acceptability, usefulness, and availability through own initiative were independently associated with non-Italian nationality, presence of more physical signs discussed in the booklet, feeling ill-prepared, and higher satisfaction with care. A preference of receiving the booklet early was more likely in Italian families, those without university education, and those involved with older residents.
  
  
  CONCLUSIONS
  The booklet is suitable to inform Dutch and Canadian families on comfort care in dementia, but implementation in Italy requires further consideration. The booklet may be integrated in advance care planning in long term care, and made available outside long term care settings to serve families who wish to be informed early.
authors: EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands. j.vandersteen@vumc.nl
authors: Jenny T
authors: JT
authors: van der Steen
authors: Marcel
authors: M
authors: Arcand
authors: Franco
authors: F
authors: Toscani
authors: Tjomme
authors: T
authors: de Graas
authors: Silvia
authors: S
authors: Finetti
authors: Marie
authors: M
authors: Beaulieu
authors: Kevin
authors: K
authors: Brazil
authors: Miharu
authors: M
authors: Nakanishi
authors: Taeko
authors: T
authors: Nakashima
authors: Dirk L
authors: DL
authors: Knol
authors: Cees M P M
authors: CM
authors: Hertogh
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D002170:Canada; D015331:Cohort Studies; D003657:Decision Making; D003704:Dementia / Q000175:diagnosis / Q000451:nursing*; D005195:Family Relations; D005260:Female; D006707:Homes for the Aged / Q000706:statistics & numerical data; D017051:Hospice Care / Q000592:standards / Q000639:trends; D006801:Humans; D007558:Italy; D008134:Long-Term Care / Q000458:organization & administration; D008297:Male; D009426:Netherlands; D009735:Nursing Homes / Q000706:statistics & numerical data; D010166:Palliative Care / Q000379:methods*; D010174:Pamphlets; D012189:Retrospective Studies; D012720:Severity of Illness Index