Mothers Raising Children with Sickle Cell Disease at the Intersection of Race, Gender, and Illness Stigma

Sickle cell disease (SCD) is the most prevalent genetic hematological disorder worldwide (Baskin et al., 2000), predominantly affecting populations of West African and African Caribbean descent, as well as populations of Asian, Middle Eastern, and Mediterranean origins (Ahmad & Atkin, 1996). SCD affects one in 400 to 500 African Americans and one in 60 to 200 African British. Carriers of the sickle cell anemia trait occur in approximately 20 percent of West Africans, 10 percent of African Caribbeans, 1 percent of Indians, and 0.75 percent of Cypriots (Aspinall, Dyson, & Anionwu, 2003; Baskin et al., 2000; Sickle Cell Society, 2007). SCD is a life-threatening, recessively inherited blood disorder with a wide range of potentially severe symptoms, including vaso-occlusive pain crises, anemia, organ damage, acute chest syndrome, chronic tissue damage, leg ulcers, severe fatigue (Atkin & Ahmad, 2001; Baskin et al., 2000), and psychosocial stressors (Telfair & Gardner, 2000). Treatment involves pain management, regular health care consultation to prevent life-threatening infections, and avoidance of circumstances that trigger pain crises. SCD symptoms begin during childhood, and the highest rate of mortality occurs in childhood (Martin, 2002) .Thus, illness management constitutes a significant focus and serious disruption in the lives of children and their parents (Logan, Radcliffe, & Smith-Whitley, 2002). Recent psychosocial SCD research has emphasized a family-based approach to coping with the illness (Baskin et al., 2000; Brown & Lambert, 1999; Wood, 2000) and focused on relationships between children's adjustment to SCD and parental functioning factors (Barbarin, 1999; Barbarin, Whitten, Bond, & Conner-Warren, 1999; Brown et al., 2000; Devine, Brown, Lambert, Donegan, & Eckman, 1998; Logan et al., 2002). However, there is little research that aims to understand the parental perspective or to situate the experiences of families affected by SCD in the broader context of social inequalities. This study investigates the experiences and perceptions of mothers raising children with SCD and situates this parental perspective within broader processes of social inequality. These experiences are explored with respect to the following underresearched areas, which represent three levels of social organization: daily caregiver coping challenges (micro level); community views of SCD, such as stigma (meso level); and systemic SCD health care provision (macro level). This is the first Canadian psychosocial study of SCD and the first investigation of SCD illness stigma outside of rural Nigeria. Accordingly, this study has an exploratory purpose. LITERATURE REVIEW The unpredictable, recurring, life-threatening nature of SCD illness crises implies a particularly complicated illness for parents to manage (Rolland, 1994). Parents live with constant worry, a restricted social life, and a major undertaking to protect their children from illness-aggravating environmental stimuli (Atkin & Ahmad, 2000; Midence, Davies, & Fuggle, 1992). SCD caregiving challenges are exacerbated for mothers, who endure most of the caregiving responsibilities and emotional stress (Atkin A Hill & Zimmerman, 1995; Olley, Brieger, & Olley, 1997). Parents' ability to cope with their child's chronic illness is associated with the availability of adequate systemic support resources (Baldwin & Carlisle, 1994; Beresford, 1994). To date, there is no research in the literature exploring SCD illness stigma outside of rural Nigeria. A study of the Igbo community in Nigeria found that people with SCD symptoms are more likely to be viewed as malevolent (Nzewi, 2001). Stigma affects stakeholders of other chronic blood diseases, such as HIV/AIDS (Alonzo & Reynolds, 1995; Antle, 2001). People affected by HIV/AIDS have been stigmatized in Canada because of the illness's perceived high risk of contagion, its incurable medical status, and its perceived links with marginalized groups in society (Antle, 2001). …