Ce. Ievers et D. Drotar, FAMILY AND PARENTAL FUNCTIONING IN CYSTIC-FIBROSIS, Journal of developmental and behavioral pediatrics, 17(1), 1996, pp. 48-55
This article reviews 31 recent articles that describe the functioning
of families and/or parents of children with cystic fibrosis (CF), comp
ares them to families of healthy children, pinpoints factors that pred
ict quality of adjustment, or evaluates interventions designed to impr
ove functioning. Commonly cited concerns included the difficulty of th
e treatment regimen, the terminal nature of CF, and the disruption of
intrafamilial relationships. Parents of children with CF experienced g
reater stress and burdens than parents of healthy children, yet parent
ing behavior and family functioning were quite similar in CF and healt
hy control groups. Higher levels of distress, an avoidant coping style
, and low levels of family support were associated with poor psycholog
ical adjustment, Recommendations for future research include: using mu
ltiple informants; using detailed, illness-specific measures and conce
ptual frameworks; and conducting studies of individual variation and i
nterventions. Practitioners might consider performing periodic updates
of how the family is managing as a whole.