title: Writing in and reading ICU diaries: qualitative study of families' experience in the ICU.
abstract: OBJECTIVE
  Keeping an ICU patient diary has been reported to benefit the patient's recovery. Here, we investigated the families' experience with reading and writing in patient ICU diaries kept by both the family and the staff.
  
  
  METHODS
  We conducted a qualitative study involving 32 semi-structured in-depth interviews of relatives of 26 patients (34% of all family members who visited patients) who met our ICU-diary criterion, i.e., ventilation for longer than 48 hours. Grounded theory was used to conceptualise the interview data via a three-step coding process (open coding, axial coding, and selective coding).
  
  
  RESULTS
  Communicative, emotional, and humanising experiences emerged from our data. First, family members used the diaries to access, understand, and assimilate the medical information written in the diaries by staff members, and then to share this information with other family members. Second, the diaries enabled family members to maintain a connection with the patient by documenting their presence and expressing their love and affection. Additionally, families confided in the diaries to maintain hope. Finally, family members felt the diaries humanized the medical staff and patient.
  
  
  CONCLUSIONS
  Our findings indicate positive effects of diaries on family members. The diaries served as a powerful tool to deliver holistic patient- and family-centered care despite the potentially dehumanising ICU environment. The diaries made the family members aware of their valuable role in caring for the patient and enhanced their access to and comprehension of medical information. Diaries may play a major role in improving the well-being of ICU-patient families.
authors.affiliation: Medical-Surgical ICU, Saint Joseph Hospital Network, Paris, France; IAME, UMR 1137, Paris Diderot University, Sorbonne Paris Cité, Paris, France.
authors.forename: Maité
authors.initials: M
authors.lastname: Garrouste-Orgeas
authors.affiliation: Maison des Adolescents, University Hospital Cochin, Paris, France; INSERM U-669, University Paris Sud and University Paris Descartes, UMR-S0669, Paris, France.
authors.forename: Antoine
authors.initials: A
authors.lastname: Périer
authors.affiliation: Management department, ESSCA School of Management PRES UNAM, Boulogne- Billancourt, France.
authors.forename: Philippe
authors.initials: P
authors.lastname: Mouricou
authors.affiliation: Medical-Surgical ICU, Saint Joseph Hospital Network, Paris, France.
authors.forename: Charles
authors.initials: C
authors.lastname: Grégoire
authors.affiliation: Medical-Surgical ICU, Saint Joseph Hospital Network, Paris, France.
authors.forename: Cédric
authors.initials: C
authors.lastname: Bruel
authors.affiliation: Medical-Surgical ICU, Saint Joseph Hospital Network, Paris, France.
authors.forename: Sandie
authors.initials: S
authors.lastname: Brochon
authors.affiliation: Medical-Surgical ICU, Saint Joseph Hospital Network, Paris, France.
authors.forename: François
authors.initials: F
authors.lastname: Philippart
authors.affiliation: Medical-Surgical ICU, Saint Joseph Hospital Network, Paris, France.
authors.forename: Adeline
authors.initials: A
authors.lastname: Max
authors.affiliation: Medical-Surgical ICU, Saint Joseph Hospital Network, Paris, France; University Paris Descartes, Paris, France.
authors.forename: Benoit
authors.initials: B
authors.lastname: Misset
mesh_terms: D000368:Aged; D001291:Attitude of Health Personnel; D005190:Family / Q000523:psychology*; D005260:Female; D065026:Hope; D006801:Humans; D007362:Intensive Care Units; D008149:Love; D008297:Male; D008875:Middle Aged; D011932:Reading; D014956:Writing