The demands of biochemical genetic disorders: a survey of mothers of children with mitochondrial disease or phenylketonuria.
A telephone survey of mothers of children with mitochondrial disease (n = 29) or phenylketonuria (PKU) (n = 29) revealed that mothers of children with mitochondrial disease report greater stress and worry, less satisfaction with social supports, greater difficulty meeting their child's extra care needs, and more impact on multiple aspects of their personal lives. They also reported more missed days of work and used a greater number of health care services and personal resources. Interventions must be developed that address the demands of biochemical genetic disorders, particularly those with the uncertain trajectory of mitochondrial disease.
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Catherine Yetter
CY
William F. Connell School of Nursing, Boston College, 140 Commonwealth Avenue, Chestnut Hill, MA 02467-3812, USA. readca@bc.edu
D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D005260:Female; D005102:Health Expenditures / Q000706:statistics & numerical data; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D028361:Mitochondrial Diseases / Q000191:economics* / Q000628:therapy; D009035:Mothers / Q000523:psychology*; D009511:New England; D010661:Phenylketonurias / Q000191:economics* / Q000628:therapy; D011159:Population Surveillance; D012959:Socioeconomic Factors; D013315:Stress, Psychological / Q000453:epidemiology*