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Patterns of management responsibility in the care of children with cystic fibrosis and leukaemia
Author(s) -
FRYDMAN MICHAEL I.
Publication year - 1981
Publication title -
journal of paediatrics and child health
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.631
H-Index - 76
eISSN - 1440-1754
pISSN - 1034-4810
DOI - 10.1111/j.1440-1754.1981.tb00011.x
Subject(s) - medicine , psychosocial , neglect , cystic fibrosis , family medicine , disease , pediatrics , nursing , psychiatry , pathology
. Eighty‐one parents of children with cystic fibrosis (CF) and 139 parents of children with leukemia were asked which of a range of health care providers had played the major role in nine areas of comprehensive paediatric care. Specialist paediatricians were reported to play the dominant role in the areas of diagnosis, ongoing medical treatment, genetic counselling and education concerning the illness and treatment. General practitioners were infrequently involved in the care of these children, other than for episodic and acute illness care. Parents in both disease categories and whose children were managed at different hospitals reported similar patterns of management responsibility and neglect. Consistent with theoretical expectations, the areas which were perceived by parents as neglected were in the psychosocial sphere: advice, future planning, co‐ordination and support.