HOMOZYGOUS SICKLE HAEMOGLOBINOPATHY IN NIGERIAN CHILDREN: ITS PSYCHOSOCIAL EFFECTS ON THEIR FAMILIES

Abstract

The literature is replete with empirical evidence on how parents of Caucasian origin react to hereditary, chronic and disabling diseases in their children. However, there is very little information on the reaction of Nigerian parents (i.e. persons of African descent) to chronic childhood disorders. The present study was therefore designed to bridge the knowledge gap in the response of Nigerian parents to Homozygous sickle haemoglobinopathy (Sickle-cell anaemia), a hereditary, long-term childhood illness, reputed for having high rates of morbidity and mortality. The first section of the thesis gives a global review of Sickle-cell disease, focusing attention on Sickle-cell anaemia. The review includes the incidence of erythrocyte sickling among Nigerians. About 33 percent of Nigerian population is reported to be heterozygous for Haemoglobin S gene, which implies that three percent of all children born has Sickle-cell anaemia. A few other hereditary childhood diseases with a long-term course are reviewed in order to be able to situate the issue of Sickle-cell anaemia as a chronic childhood impairment. A total of 280 parents of children with sickle-cell anaemia (homozygotes) and 170 parents of children with Bronchial asthma were recruited into the study and control groups respectively. There were 90 fathers and 190 mothers in the former group whilst the latter had 58 fathers and 112 mothers. The instruments used to assess the psychosocial sequelae of Sickle cell anaemia were developed by the author, (Appendices 1, II, III). The study reveals that the emotional reaction of Nigerian parents of children with Sickle-cell anaemia was similar to the response of their Caucasian counterparts described in the literature review. Findings show that the presence of the chronically ill child in the family increased the vulnerability of such a family to socio-economic and emotional problems. Assessment of burden of the affected child's condition on family functioning reveals that most respondents in the study group and a significantly less number in the control group reported that they experienced either moderate or severe burden in family interaction, financial commitments of family, social life of family and family health. In each of the four areas of family functioning assessed for burden of the affected child's condition, significantly more mothers than fathers in the study group perceived either moderate or severe burden. Most fathers in the study group reported a reaction of guilt and responsibility for the affected child's hereditary disorder; a large proportion of them resorted to the use of maladaptive behavior such as increased alcohol consumption and absenteeism from home. In spite of the discernable distress reported by respondents in the study groups, there was no statistically significant difference in the separation and divorce rates between the study and control groups. The study also shows that most parents of homozygotes had a good understanding of the cause of Sickle-cell anaemia to the extent that nearly all of them disclosed that they would not marry their current spouses if given another opportunity because of the affected child's chronic impairment. However, majority of the parents of homozygotes associated the long-term course and the frequent exacerbation of Sickle-cell anaemia to the involvement of supernatural forces such as witchcraft, evil spells cast by malevolent persons, divine retribution for parents' sins and the annoyance of the gods. On that premise, most of the parents in the study group gave traditional medicine and spiritual treatment from "Aladura" Churches to the affected child, believing that such therapy would take care of the supernatural component of the child's illness whilst hospital treatment was expected to deal with the physical component of the illness. The absorption of parents, especially mothers of homozygotes, in the care of the chronically iii child was a constraint in giving adequate care of other children in the family. Although most siblings in the study group and nearly all in the control group reacted to the affected child with either sympathy or indifference, a significant number in the former group was reported to react with emotion of either hate or hostility. The high rates of morbidity and mortality associated with Sickle-cell anaemia in the literature were confirmed in the study. Findings reveal that Bronchial asthma also had a high morbidity but the mortality was significantly lower than in Sickle-cell anaemia. The importance of traditional healers and spiritual healers in "Aladura” churches as health care providers is highlighted in the findings. Similarly, findings show that pharmacists and patent medicine dealers constitute a force to reckon with in the treatment of children. The premium position of religion as the most important source of emotional support for the majority of respondents in the study group and as significantly less number in the control group was revealed by the study. The final part of the thesis addresses itself to the policy Implications of the findings which include the need for health care personnel to increase their sensitivity to the needs of clients, new frontiers for research and a concerted national effort for the control of Homozygous sickle haemoglobinopathy