Australian families living with rare disease: Experiences of diagnosis, health services use and needs for psychosocial support

Orphanet Journal of Rare Diseases

Volumn 8, Issue 1, 2013, Pages

  Anderson, Matilda ^a,b   Elliott, Elizabeth J ^a,b,c   Zurynski, Yvonne A ^a,b  

^a CHILDREN S HOSPITAL AT WESTMEAD   (Australia)

^b UNIVERSITY OF SYDNEY   (Australia)

^c Sydney Children s Hospitals Network   (Australia)

Author keywords

Child; Disease burden; Health services; Rare disease

Indexed keywords

ADOLESCENT; ARTICLE; AUSTRALIA; CHILD; CHILDHOOD DISEASE; COMMUNICATION SKILL; DELAYED DIAGNOSIS; DISORDERS OF MITOCHONDRIAL FUNCTIONS; ELECTRONIC MEDICAL RECORD; FAMILY; FEMALE; FINANCIAL MANAGEMENT; GENERAL PRACTITIONER; HEALTH CARE UTILIZATION; HEALTH STATUS; HOSPITAL ADMISSION; HUMAN; HUMAN NEEDS; LYSOSOME STORAGE DISEASE; MALE; MEDICAL SPECIALIST; NEWBORN; PEER GROUP; PRESCHOOL CHILD; PSYCHOSOCIAL CARE; RARE DISEASE; VALIDATION PROCESS;

ADOLESCENT; AUSTRALIA; CHILD; CHILD, PRESCHOOL; FEMALE; HEALTH CARE SURVEYS; HEALTH SERVICES; HUMANS; INFANT; LYSOSOMAL STORAGE DISEASES; MALE; MITOCHONDRIAL DISEASES; RARE DISEASES;

EID: 84873516202     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/1750-1172-8-22     Document Type: Article

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