Caregivers’ Perception And Opinion About DMD Children With Neuro Rehab Services

Abstract

Duchenne muscular dystrophy (DMD) is the most common X-linked recessive disease. DMD is caused by the absence of dystrophin protein that helps to keep muscle cells intact. The onset symptoms occur during early wardhood, about 2–6 years of age. The clinical manifestations of DMD are generalized weakness followed by muscle wasting first affecting the muscles of the hips, pelvic region, thighs and shoulders girdle. The diagnosis of muscle biopsy shows elevated production of creatine kinase. The affected calf’s muscles are especially enlarged. DMD causes loss of ambulation and once the children are restricted to a wheelchair, many patients develop secondary complications such as contractures, scoliosis and respiratory problems. The following estimated report was designed pertaining to parental perspectives on key issues related to the perceived quality of educational services and communication with school personnel. Thirty-two (32) item report, which included a combination of Likert-scale and narrative responses investigated parents’ perceptions of the various interventions strategy and application of therapies that the student would need to successfully complete his or her school experience. The participants of the present report included 11 female and 5 male caretakers of the DMD ward. Age of the participated ward ranged from 5 to 21 years. Fifteen (94%) of the wards were South Indian and one (6%) was North Indian. Caretakers listed their ward’s impairment as moderate-to-severe in 63% of the cases. Neuro rehab services reported were DMD, Becker Muscular Dystrophy (BMD) and infantile progressive spinal muscular atrophy (SMA). The overall and general accomplished perception rates with school-based services were quite high. Fifty percent of caretakers reported that they were very satisfied with the provisions of their ward’s school program. Thirty-one percent of caretakers reported that they were satisfied and twelve percent reported that they were dissatisfied with the provisions of their ward’s school program. The discipline-specific treatment service ratings indicated slightly more variability. School nurse services were rated most favorable. The entire opinion about 69% of students receiving regular school nurse services, 91% of caretakers reported that they were satisfied with rest of the rehab services.  The overall estimated report showed that the respondents expressed less satisfaction with each of the above mentioned channels of communication than they did with entire neuro rehab services. Among the overall satisfaction, only three professions—functional rehabilitation therapist, school nurse, and general education achieved a mean rating of 3 (moderate satisfaction) or higher. In the present study report, only general education and functional rehabilitation therapist marked significantly about treatment strategy and was rated good accomplishment.

Keywords: DMD, BMD, FSHD, SMA, X-linked recessive

Cite this Article: Karthikeyan T. Caregivers’ Perception and Opinion about DMD Children with Neuro Rehab Services. Research and Reviews: Journal of Neuroscience (RRJoNS). 2015; 5(1): 5–14p.