1The frequency distribution of clinical burden of sickle cell disease. http://phcfm.org/index.php/phcfm/article/downloadSuppFile/380/746
Financial burden of Sickle Cell Disease on the caregivers Table 2 shows the influence of SCD on the finances of caregivers, and indicates that 165 caregivers (73.3%) stated that time spent caring for the child made them lose income or financial benefits. Similarly, 120 caregivers (53.3%) reported that the expenses of the child’s illness adversely affected the provision of their family’s basic needs such as food, clothing and shelter and 44 caregivers (19.6%) had to take out a loan to meet the expenditure of the patient’s illness.
2The impact of Sickle Cell Disease on the finances of the caregivers. http://phcfm.org/index.php/phcfm/article/downloadSuppFile/380/747
Financial burden score Using a total score of ‘0’, ‘1–3’, ‘4–6’ and ‘7–9’ for no financial impact, insignificant impact, moderate impact and severe impact respectively, 41 caregivers (18.2%) claimed that caring for a child with SCD did not have any effect on their finances. One hundred and forty-nine caregivers (66.2%) claimed that the effect on their finances was insignificant, 25 caregivers (11.1%) stated that the financial impact was moderate whilst the remaining 9 caregivers (4.0%) stated that the financial impact was severe. Burden of Sickle Cell Disease on routine family activities Table 3 shows the impact of SCD on routine family activities. Ninety-five (42.2%) caregivers stated that caring for their SCD children made them neglect other family members. Two hundred caregivers (88.9%) reported that the illness made it difficult for their children to attend school. Similarly, in 15 families (6.7%), SCD frequently or always prevented the affected child from assisting in household chores, whilst in 11 families (4.9%), the illness frequently made it difficult for other members of the family to engage in gainful activities such as going to the market or church. The child’s behaviour or demands in terms of the child’s health-care frequently disturbed recreational activities in 10 homes (4.4%).
3 The impact of Sickle Cell Disease on routine family activities. http://phcfm.org/index.php/phcfm/article/downloadSuppFile/380/748
Family routine burden score Although none of the caregivers of SCD children experienced a severe disruption in routine family activities (i.e. total score 11–15), 16 caregivers (7.1%) experienced moderate disruption (i.e. total score 6–10) and 206 caregivers (91.6%) experienced insignificant disruption (i.e. total score 1–5) in routine family activities. Only 3 caregivers (1.3%) had a total score of ‘0’, indicating that caring for children with SCD did not have an impact on their routine family activities. Burden of Sickle Cell Disease on family interaction Table 4 shows the effect of SCD on family interactions. Sixty-seven caregivers (29.8%) stated that their children’s illness caused a general atmosphere of tension or hostility in their homes. Twenty-eight caregivers (12.4%) quarrel frequently or regularly with their spouses because of the child’s illness, whilst 41 caregivers (18.2%) had experienced marital disharmony.
4The impact of Sickle Cell Disease on the family interactions. http://phcfm.org/index.php/phcfm/article/downloadSuppFile/380/749
Family disharmony score In 13 of the families (5.8%), caring for children with SCD had severely disrupted family interactions (i.e. total score of 7–9). Whilst 19 families (8.4%) had experienced moderate disruption in family interaction (i.e. total score of 4–6), a further 48 families (21.3%) experienced insignificant disruption (i.e. total score of 1–3). The majority of the families (145, 64.4%), however, did not experience any disruption in their family interaction (i.e. total score of 0). Burden of Sickle Cell Disease on the caregivers’ coping ability Seventy-six caregivers (33.8%) had difficulty coping with the care of their children. Most caregivers (196, 87.1%), however, had no difficulty accepting the responsibility of caring for them. The majority of the caregivers (190, 84.4%) felt sorrowful or depressed about their child’s illness, 70 caregivers (31.1%) frequently or always felt angry with themselves or with the child because of his or her illness, and 61 caregivers (27.1%) frequently or always felt stigmatised. Table 5 shows the impact of SCD on caregivers’ coping ability and their feelings towards the affected children.
5Impact of Sickle Cell Disease on caregivers’ coping ability and their feelings towards the affected children. http://phcfm.org/index.php/phcfm/article/downloadSuppFile/380/750
Discussion The SCD sufferers, as well as their caregivers, are faced with several challenges such as daily use of routine drugs, recurrent or frequent illnesses, the need for blood transfusion, regular clinic attendance and hospitalisation. Hence, parents or caregivers of these children tend to have worse health-related quality of life, compared to those without SCD children which impacts negatively on their behaviour and self-esteem. 2,8 In the present study, the socio-demographic characteristics of SCD caregivers were similar to those of other studies in the developing countries such as Nigeria. 7,9 Whilst only about half of the caregivers completed tertiary education, approximately 13% either did not have any formal education or just completed primary school education. In addition, the socio-economic stratification of the caregivers was similar to that of parents of children with other illnesses in south-western Nigeria 7,10,11 There is therefore no reason to suggest that the participants involved in this study differed in socio-demographic characteristics from the general population in our environment other than the illness variable. In this study, the rates of bone pain episodes and hospitalisation amongst the SCD children were high. About 6% of the children had never experienced significant bone pain episodes. Only 7% of the children had never been admitted before. This supports the hypothesis that bone pain episodes account for the reasons why SCD children are admitted in most cases.7 Hence, if bone pain episodes can be controlled, the social as well as the psychological burdens of the disease may be ameliorated. The financial burden of SCD on the caregivers and their families is high in this study. More than half of the caregivers reported that the expenses of the child’s illness adversely affected the family’s basic needs such as food and house rent. This is not surprising considering the rising trend of inflation in this period of global economic recession and socio-political instability. In Nigeria, like many other developing countries, national programmes on health insurance and social welfare systems are absent, making caring for a child with chronic illnesses such as SCD a great financial burden. Furthermore, about 70% of the caregivers in this study lost income or financial benefits due to time spent caring for their children. In Nigeria, the predominant form of health-care financing is out-of-pocket. As observed previously, job loss, underemployment and/or unemployment arising from time spent caring for a child with SCD, will significantly contribute to the financial burden experienced by caregivers and their family.2 In the present study, about 40% of the caregivers sometimes or frequently neglected other members of the family because of the demands caused by the child’s illness. It is known that the way parents relate with their ill children and the feeling of neglect this generates in other siblings is a major factor in family dysfunction. 9This neglect especially when experienced too frequently has been described as a risk factor in the psychopathology of psychosocial problems in chronic physical illness. 12Frequent school absenteeism as a result of recurrent crises and suboptimal health is another major problem of SCD children, as shown in this study. It is important, therefore, that adequate and concrete educational plans should be developed for them. Family life and interactions have been described as significant areas of social life for SCD patients and their families. 7 In this study, at least 70% of the caregivers reported intact family relationships in the three indices assessed. This is similar to findings by Ohaeri 7and Adeodu 13 . The reason for this may be because of the ameliorating effect of the extended family structure, culture and religion. In Nigeria, beliefs are influenced by cultural and religious values, which in turn influence health behaviour and coping strategies. 14Unlike previous research conducted in Nigeria 7,15 which reported that families of individuals with SCD deny evidence of stigmatisation, about half of the caregivers in this study reported the existence of stigmatisation. However, this is consistent with findings in developed countries such as the United Kingdom (UK) and the United States of America (USA) where stigmatisation has been described as a prominent social problem in mothers of Afro-Caribbean children with SCD who are living outside Africa. 14Depression was also experienced by the caregivers interviewed. This is consistent with a study on psychosocial and family functioning in children with SCD and their mothers in Atlanta, Georgia, where they found that sickle cell patients and their caregivers experienced more depressive symptoms than the controls. 16Similar studies in developing countries such as Nigeria also agree with this high level of depression amongst caregivers of chronic illness. 7,9,15 In this study, caregivers coped differently. Some of them were able to cope relatively well, especially in routine family activities. However, others coped inadequately, resulting in feelings of depression, sorrow and anger towards themselves and the affected child. This variability in the coping ability of the caregivers may not necessarily be a consequence of the severity of the clinical condition of the child, but several other factors such as the socio-demographic characteristics of the caregivers and the social or family support available to them. The findings of this study suggest that caregivers of SCD children experience considerable psychosocial impairment from their children’s illness. Hence, more attention is needed in this regard, since psychosocial maladjustment is known to aggravate problems of SCD children. 9,17,18 Social welfare programmes such as national health insurance for children with chronic illnesses will definitely alleviate the associated financial burden. For instance, the caregivers of SCD children in western countries such as the UK have the opportunity to benefit from health insurance and hence, they tend to report lower financial burdens compared with their counterparts in most parts of the developing world. 18Other social welfare programmes and self-help group programmes are also vital in relieving the psychosocial burden of disease and consequently, improving the quality of care for the SCD patients. Presently, in Nigeria, the National Sickle Cell Association and Sickle Cell Disease clubs are based in a few tertiary health institutions with insufficient community impact. 7,13 These social organisations should be encouraged so that SCD children and their caregivers can share their feelings and counsel one another. Other measures to reduce the impact of SCD on caregivers include limitation of family size to reduce the risk of mothers from having additional SCD children. In addition, there should be promotion of neonatal screening, genetic counselling and comprehensive public health education. The latter must aim at increasing community awareness on the burden and prevention of the disease. Routine haemoglobin genotype determination for adolescents before entering into marital relationships is vital. This has been noted to offer a pragmatic approach in reducing the high prevalence of the sickle cell gene and the attendant problems in Nigeria. 13Limitations of the study A limitation to this study was our reliance on the caregivers to speak on behalf of their families, because it is difficult to objectively quantitate emotional stress and disturbed intra-family ties. However, the careful selection of these caregivers ameliorated the possible effect of this potential source of bias. Recommendations Government should strengthen the existing national health insurance as well as subsidising the cost of SCD care to alleviate the huge financial burden on the family. In addition, regular psychological support should be available to alleviate caregivers’ and/or family members’ burdens. ConclusionIn conclusion, this study has shown that the caregivers and/or families of children with SCD experience a significant psychosocial burden. Hence, clinicians and policy makers should provide the necessary psychological care and support to these individuals. Acknowledgement We are grateful to those who assisted us during the preparation of this article. We also acknowledge, with thanks, all our colleagues who were involved in the management of these patients. Competing interests The authors declare that they have no financial or personal relationship(s) which may have inappropriately influenced them in writing this article. 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