How Do New Immigrant Families (African Continent) with a Child with Sickle Cell Disease (SCD) Experience the Western Medical System?

• Published in: Blood 2016-12, Vol.128 (22), p.3529-3529
• Main Authors: Bruce, Aisha Aiko, Witol, Adrienne D., Greenslade, Haley, Plaha, Mandeep, Venner, Mary Anne
• Format: Article
• Language: English
• ISSN: 0006-4971; 1528-0020
• DOI: 10.1182/blood.V128.22.3529.3529

New immigrant families from continental Africa account for an increasing proportion of pediatric patients with Sickle Cell Disease (SCD) in Canada and North America. As families enter the western medical system they face a myriad of tests and medications as well they encounter language barriers, endless forms and large teams. Previous experiences with healthcare also influence families' expectations and adjustment.There is no published data exploring the experiences of these families to help guide practice. Resources such as the Canadian Pediatric Society guide on immigrant health are not specific to SCD. We set out to examine cultural sensitivity methodologically in order to improve delivery of care. What are newcomer families' experiences with SCD in Canada and their home country?What are the prevailing values and beliefs related to SCD that shape the attitude and behaviors of newcomer families?How do newcomer families perceivethe current delivery of medical care (the barriers and the facilitators)? Focused ethnography was used to understand the socio-cultural context in which newcomer families from Africa experience their child's SCD; to explore their perspectives, beliefs, how they manage daily life and experience the western medical system. A sample size of12-15 participants was selected to reach saturation.Participants were selected using purposeful and convenience sampling and semi-structured interviews were held with the primary caregiver(s) with use of aninterpreter if needed. Research Ethics Board approved. Saturation was reached at 10 families and 12 were interviewed due to recruiting methods. Demographics:12 caregivers (N=8 females; N=4 males); most were in their forties and from Congo, Nigeria or Liberia. The majority had 3 or more children, were married and employed. The majority did not have extended family within the region. Languages spoken at home were English, French, Yoruba, Swahili orMoorie. They immigrated to Canada between 2002 and 2015 For themes see table 1. Participants' attitude, perception and knowledge about SCD were profoundly affected by their experiences in their countries of origin. These mostly negative experiences (seeing children suffering without appropriate medical care; observing social stigma, etc.) were deeply embedded and determined their response to SCD in their children. 1. Practice guideline: Allow for sufficient time and provision oftranslation services to explore the families' experience with stigma within cou