Some Social-Psychologic Dimensions of Sickle Cell Anemia Among Nigerians

‘All her children are born that way’: gendered experiences of stigma in families affected by sickle cell disorder in rural Kenya

“…The WHO (2006) report on genetic services in developing countries illustrates this gap well; only four of its 278 referenced articles provide reports from this continent. Qualitative accounts have been published from developed countries (Rapp 1988, Featherstone et al 2006), with specific attention to issues of discrimination (Atkin et al 1998), but much of the data on experiences of genetic conditions from Africa (Bamisaiye et al 1974, Akenzua 1990, Ohaeri et al 1995, Adeodu et al 2000, Assimadi et al 2000, Ohaeri and Shokunbi 2001, Ohaeri and Shokunbi 2002) draws on quantitative surveys and illustrates issues in limited geographic areas, particularly West Africa. Exceptions are qualitative accounts of SCD beliefs as reincarnation in Nigeria (Nzewi 2001) and Ghana (Allotey and Reidpath 2001), a description of biosocial illness associated with SCD carrier status in Senegal (Fullwiley 2006) and experiences of stigmatisation around the genetically influenced disorder podoconiosis in Ethiopia (Tekola et al 2009).…”

Children with sickle cell disease who are experiencing psychosocial problems concurrently with their mothers: a Nigerian study

“…If not handled carefully, it could cause further distress for the whole family, and sometimes lead to severe complications such as marital discord or even divorce. 13,17,18 Furthermore, it can adversely affect the manageability of the child's physical disease by increasing costs (time and money) and undermining compliance; a consequence of the significant role played by mothers when their children are ill. 7,[23][24][25] Moreover, it is more likely that subsisting problems in the mother will adversely affect the physical and psychosocial care of the child, and the family as a whole. Therefore, it is important to identify concurrent psychosocial morbidity irrespective of aetiology and deal with it; although, it is even better to prevent it.…”

“…Also used was a semi-structured questionnaire developed by the author to gather information on socio-demographic characteristics of the children and their mothers and the effect of the disease on their level of physical, psychological, social and family functioning as guided by existing literature on the subject. [12][13][14]17,18 Information sought include among others hospital consultation patterns, school days missed per term , hospital admissions, interference with play, domestic work, experiences of discrimination, feeling of inferiority, fear of failure in life and of death; and the effect of illness on family members and on interactions and the nature and degree of support available.…”

“…[5][6][7][8][9][10][11] Some factors recognized as mediating psychosocial dysfunction in physical illness include: nature and severity of disability caused by the disease; mode of management; and degree of social restriction imposed by the disease on the patient, and their family. 7 Childhood physical illness impacts greatly on family functioning [12][13][14] ; by virtue of its central role as a socializing agent, the structure and functioning state of the family can affect, and be affected by a child's physical illness. [11][12][13][14][15] Existing literature on adjustment to physical illnesses indicate that mothers are relied on to provide vital information about the family.…”

“…6,16 Family maladjustment in SCD resulting from disruptions in the accustomed form and role of social interaction, and accompanying psychological tension in the family and its members, has been well documented. 12,13,17,18 The social constriction associated with caring for the affected child may encroach on the quantity and quality of parental care available for the siblings, with attendant risk of sibling jealousy; while parents' attention for one another may be compromised, and this may in turn increase the risk of marital disharmony.…”