title: Supported or stigmatised? The impact of sickle cell disease on families.
abstract: Caring for a child with a chronic medical condition can be stressful for parents and likely to have an impact on family dynamics. In a low-prevalence region, services to support parents of children with sickle cell disease (SCD) are limited and consequently parents can feel isolated. We explored this issue in a service evaluation, using semi-structured questionnaires to interview twelve families who had a child with SCD. Our analysis outlines the impact that this condition has on family life and the importance that cultural values and perspectives have in learning to deal with the issues involved. We conclude that families would benefit from greater multidisciplinary support on a regular basis.
authors.forename: Brigid
authors.initials: B
authors.lastname: Keane
authors.forename: Lindy
authors.initials: L
authors.lastname: Defoe
mesh_terms: D000293:Adolescent; D000328:Adult; D000755:Anemia, Sickle Cell / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D057545:Social Stigma; D012944:Social Support; D013315:Stress, Psychological / Q000628:therapy*; D011795:Surveys and Questionnaires; D006113:United Kingdom