The Experience of Parents of Children With Genetically Determined Leukoencephalopathies With the Health Care System: A Qualitative Study.
J Child Neurol
; 38(5): 329-335, 2023 04.
Article
in En
| MEDLINE
| ID: mdl-37225698
ABSTRACT
Parents of children with genetically determined leukoencephalopathies play a major role in their children's health care. We sought to gain a better understanding of their experience with the public health care system in Quebec, Canada, to obtain suggestions for improving their services, and to identify modifiable factors to improve their quality of life. We conducted interviews with 13 parents. Data was analyzed thematically. Five themes were identified challenges of the diagnostic odyssey, limited access to services, excessive parental responsibilities, positive relationships with health care professionals as a facilitator of care, and benefits of a specialized leukodystrophy clinic. Parents felt like waiting for the diagnosis was extremely stressful, and they expressed their need for transparency during this period. They identified multiple gaps and barriers in the health care system, which burdened them with many responsibilities. Parents emphasized the importance of a positive relationship with their child's health care professionals. They also felt grateful for being followed at a specialized clinic as it improved the quality of care received.
Key words
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Parents
/
Quality of Life
Type of study:
Prognostic_studies
/
Qualitative_research
Aspects:
Patient_preference
Limits:
Child
/
Humans
Country/Region as subject:
America do norte
Language:
En
Journal:
J Child Neurol
Journal subject:
NEUROLOGIA
/
PEDIATRIA
Year:
2023
Document type:
Article
Affiliation country:
Canada