[Show abstract][Hide abstract] ABSTRACT: To investigate psychosocial adjustment to visual loss in patients with retinitis pigmentosa (RP). Design: Cross-sectional study.
Thirty-three legally blind patients with RP participated in the study. Information regarding the patients' adjustment to their visual loss was obtained using the Psychological Adjustment to Illness Scale (PAIS-SR). Seven psychosocial domains were tested: health-care orientation, vocational environment, domestic environment, sexual relationships, extended family relationships, social environment, and psychological distress. These scores were compared with the psychosocial adjustment of patients with diabetes.
Significantly elevated scores (a high score reflecting poor adjustment) were seen in four out of seven domains. The highest relative score was seen in the health-care orientation domain (65 +/- 14, p < 0.001), followed by vocational function (61 +/- 11, p < 0.001), social environment (58 +/- 9, p < 0.001), and extended family relationships (55 +/- 9, p < 0.05). The total PAIS score was significantly elevated (58 +/- 8; p < 0.001).
Patients with RP have difficulties in adjusting to their visual loss particularly with respect to health-care orientation, vocational environment, social environment, and extended family relationships. They face more difficulties in these domains than diabetic patients in adjusting to their illness.
No preview · Article · Mar 2007 · Ophthalmic Genetics
[Show abstract][Hide abstract] ABSTRACT: To examine parental knowledge and expectations regarding the roles of trainees involved in their child's ophthalmic care.
Parents of 128 children attending outpatient pediatric ophthalmology clinics at The Hospital for Sick Children in Toronto.
A questionnaire was given prospectively to parents (and 1 custodial grandparent). They were asked to identify, using a checklist, the roles and responsibilities of medical students, residents, and fellows and to explore their expectations regarding trainee participation using a multiple choice questionnaire.
Parental knowledge and expectations regarding the roles and participation of medical trainees in the ophthalmic care of their children as measured by survey questionnaire.
Parental knowledge about the roles of trainees was very limited with one exception: more than 95% knew that medical students are learning to be doctors and most had a good knowledge of the medical student role. More than 76% wanted to be asked specifically if they would allow trainees involved in their child's care. Seventy-five percent were happy to have capable trainees involved, provided that the trainees discuss all decisions with the responsible staff doctor. Parents wanted health care providers to identify themselves by name (77%) and position (86%). Only 3% did not want trainees involved in any part of their child's care.
Although parental knowledge regarding the relative roles of trainees is poor, parents generally are willing to have trainees involved in their child's medical and surgical care, provided they are adequately supervised and that the parent is aware of their participation.