Burden of Sickle Cell Anaemia On Families of Patients

Abstract

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.

Controlling sickle cell disease in Ghana ethics and options

“…Though the condition can be satisfactorily managed, families often face enormous challenges characterized by repeated disruptions in family routines and competition with income-generating family endeavors. The work of Famuyiwa and Akinyanju [ 23 ] showed a significant correlation between total burden scores on families with SCD and frequency of crisis. Ohaeri and Shokunbi [ 24 ] reported that objective burden indices were significantly higher for SCD in crisis compared to the steady state.…”

Mothers' Knowledge of Sickle-Cell Anaemia in Nigeria

“…Reports from Nigeria have delved on some psychological aspects of the disorder [4,5], and specifically on attitudes and beliefs of caretakers [6], and burden on mothers of sufferers [7]. Without doubt, psychological reactions on one hand and attitudinal issues on the other are expected to influence understanding of the disorder reciprocally, but then the latter factor deserves focal investigation in its own right.…”