Leyla Baysan Arabaci, Sati Bozkurt, Senay Vara, Samim Ozen, Sukran Darcan, Damla Goksen Simsek.
Difficulties experienced by caregivers of patients diagnosed with osteogenesisimperfecta (OI): example of a hospital.
J Pak Med Assoc Jan ;65(7):764-70.
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. Conclusion: Caregivers of patients diagnosed with osteogenesisimperfecta experienced psychological and social difficulties..
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