title: Mothers raising children with sickle cell disease at the intersection of race, gender, and illness stigma.
abstract: This qualitative study used the long interview method with Canadian mothers of African and Caribbean descent to understand the underresearched experience of raising a child with sickle cell disease (SCD). Mothers' realities were explored through three levels of social organization: daily caregiver coping (micro level); community views of SCD, such as stigma (meso level); and systemic SCD health care provision (macro level). Through the use of population health and structural social work perspectives, mothers' experiences were examined in the context of perceived gender and racial oppression. Saturation was achieved after initial interviews with 10 participants and a four-month postinterview with half of the participants. Mothers commonly reported several daily coping challenges: fear of their children's death, separation anxiety, loss of control over life, helplessness, and loneliness/isolation. SCD stigma interacted with racism, contributed to social isolation, and prevented families from organizing as a group. All mothers perceived racism as a salient factor behind inadequate mainstream SCD health care. Recommendations to improve SCD health care and implications for social work practice and research are discussed. This is the first known Canadian psychosocial study of SCD and investigation into SCD stigma outside of rural Nigeria.
authors.affiliation: Counseling and Healing Services, Toronto, Canada. david.burnes@utoronto.ca
authors.forename: David P R
authors.initials: DP
authors.lastname: Burnes
authors.forename: Beverley J
authors.initials: BJ
authors.lastname: Antle
authors.forename: Charmaine C
authors.initials: CC
authors.lastname: Williams
authors.forename: Lisa
authors.initials: L
authors.lastname: Cook
mesh_terms: D000223:Adaptation, Psychological; D000349:Africa / Q000208:ethnology; D000755:Anemia, Sickle Cell / Q000453:epidemiology / Q000208:ethnology / Q000523:psychology*; D002170:Canada / Q000453:epidemiology; D017691:Caribbean Region / Q000208:ethnology; D006801:Humans; D007398:Interpersonal Relations; D007407:Interviews as Topic; D009035:Mothers / Q000523:psychology*; D016487:Parenting / Q000523:psychology*; D010865:Pilot Projects; D011287:Prejudice; D036301:Qualitative Research; D044469:Racial Groups; D012737:Sex Factors