Understanding the experiences and needs of individuals with Spinal Muscular Atrophy and their parents: A qualitative study

BMC Neurology

Volumn 15, Issue 1, 2015, Pages

  Qian, Ying ^a   McGraw, Sarah ^b   Henne, Jeff ^b   Jarecki, Jill ^c   Hobby, Kenneth ^c   Yeh, Wei Shi ^d  

^a SMA Foundation   (United States)

^b Henne Group   (United States)

^c Cure SMA   (United States)

^d BIOGEN   (United States)

Author keywords

Diagnosis; Life impact; Parent; Patient; Qualitative; Screening; Spinal Muscular Atrophy (SMA)

Indexed keywords

ADOLESCENT; ADULT; AGE DISTRIBUTION; ARTICLE; AWARENESS; CHILD; CONTROLLED STUDY; COPING BEHAVIOR; DISEASE CLASSIFICATION; DISEASE SEVERITY; FEMALE; FUNCTIONAL ASSESSMENT; HEALTH CARE ACCESS; HEALTH CARE DELIVERY; HEALTH CARE NEED; HUMAN; MAJOR CLINICAL STUDY; MALE; MEDICAL SPECIALIST; NEWBORN SCREENING; PARENT; PERSONAL EXPERIENCE; PRESCHOOL CHILD; PSYCHOSOCIAL CARE; QUALITATIVE RESEARCH; SCHOOL CHILD; SOCIAL PSYCHOLOGY; SPINAL MUSCULAR ATROPHY; SPINAL MUSCULAR ATROPHY TYPE I; SPINAL MUSCULAR ATROPHY TYPE II; SPINAL MUSCULAR ATROPHY TYPE III; YOUNG ADULT; ATTITUDE TO HEALTH; COST OF ILLNESS; FAMILY; HEALTH SERVICE; MIDDLE AGED; MUSCULAR ATROPHY, SPINAL; PSYCHOLOGY; SPINAL MUSCULAR ATROPHIES OF CHILDHOOD;

ADOLESCENT; ADULT; CHILD; COST OF ILLNESS; FAMILY; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; MALE; MIDDLE AGED; MUSCULAR ATROPHY, SPINAL; PARENTS; QUALITATIVE RESEARCH; SPINAL MUSCULAR ATROPHIES OF CHILDHOOD; YOUNG ADULT;

EID: 84945135858     PISSN: None     EISSN: 14712377     Source Type: Journal    
DOI: 10.1186/s12883-015-0473-3     Document Type: Article

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