ABSTRACT
Objective: Living with epilepsy imposes great challenges on both patients and their family caregivers but most researchers only explored the impact on patients, with less attention given to family caregivers. Our study intended to explore the needs and problems of epilepsy family caregivers of epilepsy patients encountered during the caregiving process. Methods: Respondents were recruited from the Neurology Clinic of Hospital Sultanah Nur Zahirah (HSNZ), Kuala Terengganu. A semi-structured interview was conducted using openended and broad questions asking about their general experience in caregiving, daily routine activities, caregiving effects, caregiving difficulties and caregivers’ needs. The interviewed data were later transcribed into verbatim before further analysis using the QSR International’s NVivo10 software. Results: Fifteen Malay Muslim family caregivers between the age of 19 and 66 years participated. Most were females (53%), married (67%), with education level at secondary school or equivalent (73%) and were homemakers (40%). In particular, respondents expressed the need for extra support from their family members and experts in terms of physical (care relief), mental, and financial aspects. In addition, the major caregiving problems identified included: (i) emotional disturbances (sad, angry, depressed, and anxious); (ii) care giving challenges (family adjustments, physical burden, psychological burden, and time management); and (iii) financial issues (not working and limited family income). Some advantages in caregiving were also reported. Conclusion: In conclusion, their experiences while taking care of their loved ones in terms of feelings, beliefs and needs exposed the difficulties in caregiving, causing substantial emotional pressure which could later lead to poor quality of caregiving.
ABSTRACT
RetCam is an excellent screening tool for the detection of retinopathy of prematurity (ROP). However, affordability is a barrier when adopting the use of RetCam in developing countries. We aimed to describe different stages of ROP using ultrasonographic B-scan and to evaluate the association between funduscopic examinations and ultrasonographic B-scan findings in premature neonates with ROP in Malaysia. A descriptive cross sectional study was conducted in 90 eyes of 47 premature neonates with different stages of ROP in three tertiary hospitals in Malaysia. Experienced ophthalmologists performed detailed funduscopic examinations using binocular indirect ophthalmoscopy (BIO). A masked examiner performed a 10 MHz ultrasonographic B-scan evaluation with 12 meridian position images within 48 hours of clinical diagnosis. Data from the clinical examination and ultrasonographic findings were collected and analysed. We recruited 37 eyes (41.1%) with stage 1 ROP, 29 eyes (32.3%) with stage 2, 18 eyes (20.0%) with stage 3, and 3 eyes (3.3%) with stages 4 and 5 based on the clinical assessment. Ultrasonography correctly identified 3 (8.1%) stage 1 eyes, 17 (58.6%) stage 2 eyes, 13 (72.2%) stage 3 eyes, and 3 each (100%) of the stage 4 and 5 eyes. There was a significant association between the funduscopic signs and the ultrasound findings for stage 2 ROP and above (Fisher’s exact test, p <0.001). In conclusion, all stages of ROP were detected and described with a 10 MHz ultrasonic B-scan system. A significant association was observed between funduscopic signs and ultrasonographic findings in premature Malaysian neonates with stage 2 ROP and above.