Duchenne muscular dystrophy--parental perceptions.
Clin Pediatr (Phila)
; 41(2): 105-9, 2002 Mar.
Article
in En
| MEDLINE
| ID: mdl-11931326
ABSTRACT
Quality of life and availability of services are important for boys with Duchenne muscular dystrophy (DMD) and their families. Families attending our neuromuscular clinic completed a questionnaire on parental perception regarding the importance of services, health issues, and quality of life issues both "now" and "in the future." Eighty-nine percent of the families (31/35) completed questionnaires. Services and health issues related to prolonging ambulation were most important, especially for the parents of younger boys. Mental health issues such as social isolation, anger, and depression were very important, particularly for the families of older boys and were anticipated to be more important in the future. Pediatricians should be aware of both the immediate needs of families to meet the physical and emotional challenges of DMD and the increasing requirement to address the social needs of these patients and their families as the boys become older.
Search on Google
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Parents
/
Physician's Role
/
Quality of Life
/
Attitude to Health
/
Child Health Services
/
Disabled Children
/
Needs Assessment
/
Muscular Dystrophies
Type of study:
Prognostic_studies
/
Qualitative_research
Aspects:
Determinantes_sociais_saude
/
Patient_preference
Limits:
Adolescent
/
Adult
/
Child
/
Child, preschool
/
Humans
/
Male
Language:
En
Journal:
Clin Pediatr (Phila)
Year:
2002
Document type:
Article
Affiliation country: