Raising a child with sickle cell disease
Subtitle: experiences and perceptions of mothers.
Published: 2005
Language: eng
Number of pages: 95
Description: Objectives. To explore experiences and perceptions of mothers of children with SCD with respect to healthcare, stigma, and daily challenges.Rationale. Psychosocial research on sickle cell disease (SCD) indicates that SCD is marginalized in the health system and parents experience emotional challenges. Research on SCD stigma is scarce. There is no psychosocial SCD research from Canada.Results. Mothers reported a lack of knowledge and resources allocated to SCD in the health system and perceived racism as a salient factor contributing to this structural marginalization. SCD stigma does exist in Canada in various ways. Mothers expressed a stressful lifestyle, employment challenges, and emotional hardships such as helplessness, loneliness, low sense of control, guilt, fear of child's death, and separation anxiety.Conclusions/significance. This study acts as a foundation for future psychosocial research in Canada and for future SCD stigma research in general.Methods. Qualitative, long interview methods with 10 mothers.
Notes: Source: Masters Abstracts International, Volume: 44-02, page: 0699.

Thesis (M.S.W.)--University of Toronto, 2005.

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