%0 Journal Article
%T Psychosocial burden of sickle cell disease on the family, Nigeria
%A Samuel A. Adegoke
%A Emmanuel A. Kuteyi
%J African Journal of Primary Health Care & Family Medicine
%D 2012
%I 
%R 10.4102/phcfm.v4i1.380
%X Background: Sickle Cell Disease (SCD), the most common genetic disorder amongst Black people, poses a significant psychosocial burden on the sufferers, the caregivers and their families. Objective and methods: From 01 January 2011 to 30 September 2011 the caregivers of children with SCD treated at the Paediatric Haematology Clinic of the University Teaching Hospital in Ado-Ekiti, Nigeria, were included in a study, using a structured questionnaire and a validated, culture-relevant disease burden interview to assess the psychosocial burden of SCD on these caregivers. Three main objective psychosocial domains and some subjective domains, including the caregivers¡¯ coping ability were assessed. Results: A total of 225 caregivers, consisting of 202 mothers (89.8%), 15 grandmothers (6.7%) and 8 fathers (3.6%) were studied. In 53.3% of the families, the care of children with SCD adversely affected the provision of their basic needs, with 73.3% of the caregivers stating that time spent caring for the child made them lose income or financial benefits; 19.6% of the caregivers had to take out loans to meet the expenditure of the patient¡¯s illness. Caring for children with SCD reportedly made 42.2% of the caregivers neglect other family members. In addition, 14.2% of the families experienced moderate to severe disruption in their day-to-day interactions within the family to the extent that 12.4% frequently quarrelled due to the child¡¯s illness. Conclusion: Caregivers are faced with enormous financial, interpersonal and psychological problems. Social support should be available to alleviate caregivers¡¯ and/or family members¡¯ burdens. Le poids psychosocial de la dr¨¦panocytose sur la famille, Nigeria Contexte: La dr¨¦panocytose, le trouble g¨¦n¨¦tique le plus commun dans la population noire, constitue un poids psychosocial significatif pour les malades, les aides soignant et leurs familles. Objectif et m¨¦thodes: Du 1er Janvier au 30 Septembre 2011, les aides soignant d¡¯enfants atteints de dr¨¦panocytose trait¨¦s dans la clinique d¡¯h¨¦matologie p¨¦diatrique de l¡¯h pital universitaire d¡¯Ado-Ekiti, au Nigeria, ont particip¨¦ ¨¤ une ¨¦tude, r¨¦alis¨¦e ¨¤ l¡¯aide d¡¯un questionnaire structur¨¦ et d¡¯un entretien sur le poids de la maladie valid¨¦ et pertinent en termes de culture afin d¡¯¨¦valuer le poids psychosocial de la dr¨¦panocytose sur ces aides soignant. Les trois principaux domaines psychosociaux objectifs et subjectifs, et la capacit¨¦ des aides soignant ¨¤ faire face ont ¨¦t¨¦ ¨¦valu¨¦s. R¨¦sultats: Un total de 255 aides soignant, consistant en 202 m¨¨res (89.8%), 15 grands-m¨¨res (6.7%) et 8
%K burden
%K caregivers
%K families
%K psychosocial
%K sickle cell disease
%U http://www.phcfm.org/index.php/phcfm/article/view/380