title: Difficulties experienced by caregivers of patients diagnosed with osteogenesisimperfecta (OI): example of a hospital.
abstract: OBJECTIVE
  To identify the difficulties experienced by medical caregivers of inpatients diagnosed with osteogenesisimperfecta.
  
  
  METHODS
  The descriptive, cross-sectional study was conducted at a university hospital in western Turkey from April to May, 2012, and comprised relatives providing care to patients who were diagnosed with osteogenesisimperfecta and were being treated in the paediatric endocrinology unit. Data was collected via face-to-face interviews with patient relatives. The 35-itemquestionnaire had 16 open-ended and 19 close-ended questions.
  
  
  RESULTS
  The mean age of the 46 caregivers was 35.52±6.65 years, and 43(93.5%) of them were mothers. All of them said they felt anxious (100%), while 44(95.7%) felt sad/sorrow, 41(89.1%) puzzled, 40(87.0%) nervous, 40(87.0%) frightened, 39(84.8%) disappointed, 29(63%) shocked, and 28(60.9%) depressed when they first heard the diagnosis. Overall, 26(56.5%) experienced physical, 45(97.8%) psychological, 45(97.8%) social, and 35(76.1%) economic changes and difficulties, while 24(52.1%) had no social support. Of all the patient relatives, 38(82.6%) were unable to obtain adequate information about the disorder from the healthcare team.
  
  
  CONCLUSIONS
  Caregivers of patients diagnosed with osteogenesisimperfecta experienced psychological and social difficulties..
authors.affiliation: Izmir Katip Celebi University, Health Science Faculty, Division of Nursing, Department of Mental Health and Psychiatric Nursing, Cigli, Turkey.
authors.forename: Leyla Baysan
authors.initials: LB
authors.lastname: Arabaci
authors.affiliation: Ege University, Faculty of Nursing, Department Psychiatric Nursing Bornova, Turkey.
authors.forename: Sati
authors.initials: S
authors.lastname: Bozkurt
authors.affiliation: Ege University Medical School, Pediatric Endocrinolgy Bornova, Izmir, Turkey.
authors.forename: Senay
authors.initials: S
authors.lastname: Vara
authors.affiliation: Ege University Medical School, Pediatric Endocrinolgy Bornova, Izmir, Turkey.
authors.forename: Samim
authors.initials: S
authors.lastname: Ozen
authors.affiliation: Ege University Medical School, Pediatric Endocrinolgy Bornova, Izmir, Turkey.
authors.forename: Sükran
authors.initials: S
authors.lastname: Darcan
authors.affiliation: Ege University Medical School, Pediatric Endocrinolgy Bornova, Izmir, Turkey.
authors.forename: Damla Göksen
authors.initials: DG
authors.lastname: Simsek
mesh_terms: D000328:Adult; D001007:Anxiety / Q000523:psychology; D017028:Caregivers / Q000523:psychology*; D003430:Cross-Sectional Studies; D003863:Depression / Q000523:psychology; D005195:Family Relations; D005220:Fathers / Q000523:psychology; D005260:Female; D006785:Hospitals, University; D006801:Humans; D008297:Male; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D010013:Osteogenesis Imperfecta / Q000451:nursing*; D012944:Social Support; D011795:Surveys and Questionnaires
keywords: Osteogenesisimperfecta, Caregivers, Patients.