This study examines the burden on the families of children with sickle cell anaemia in a naturalistic setting. Compared with a matched group of epileptics (N=76) families of sickle cell anaemia victims aged 12 years and below (N = 85) suffer greater burden on a standardised scale which encompasses several burden parameters. Family size and multiple incidence were the only clinico-demographic variables which exerted tangible total burden effects.
Financial expenses incurred on medical care; effect on physical health of family members; sense of despair regarding expectation of crisis; sleeplessness and frustration in any member of the family; and abandonment of joint family activities were the commonest causes of burden. There was a significant correlation between total burden scores and frequency of crisis (r=0.79). It is suggested that clinicians should pay attention not only to deficiencies but also strengths and coping capacity of families which can be reinforced to formulate meaningful intervention programmes.
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