“A complex interface: Exploring sickle cell disease from a parent’s perspective, after moving from Sub-Saharan Africa to North America”

Abstract

Introduction: Sickle cell disease (SCD) is an inherited, multi-system, chronic disease with the highest prevalence affecting people of Sub-Saharan African descent. While major advances in SCD care have occurred over the last few decades in many African countries these advances are not readily available. Prior literature from Ghana and Kenya describe stigma, despair, and economic burden as well as hope when a child has SCD. When people migrate to North America with a child with SCD it is unknown whether their perception of the disease changes. We asked, “How do immigrant parents of children with SCD from Sub-Saharan Africa perceive, and manage the disease in the context of western medical care?”

Methods: The research question was explored with qualitative methodology, specifically focused ethnography. Semi-structured interviews were conducted with parent(s). The interviews were audio recorded, transcribed, and open coded. Rigor was determined through methodological coherence, appropriate and sufficient sampling, and iterative data collection and analysis.

Results: Twelve interviews were conducted. Identified themes are as follows: memories of SCD in Africa, the emotional journey towards acceptance, and parental approach to care for their child.

Conclusions: Healthcare providers should be responsive to an immigrant families’ needs and not expect linear progression of emotional acceptance to the diagnosis. Healthcare providers patience with the process helps establish trust, works to facilitate and encourage hope and acknowledges the strength of the families, and their dedication to their family member. Healthcare providers should acknowledge parents’ sources of support (religion/family) and ensure parents are aware of medical advances.

Keywords:

• Sickle cell disease
• hemoglobinopathy
• qualitative
• psychosocial
• child
• pediatric

Disclaimer

The information, content, and views expressed in this article are the authors and not that of the institution or the funding agency.

Disclosure statement

Dr. A. Bruce: Consultant for Novartis (2015-2016), Apopharma (2015-2016), and Bristol-Meyers-Squibb (2016-2017). All other authors have no disclosures or conflicts of interest and all authors contributed to the manuscript in significant ways, have reviewed and agreed upon the manuscript content.

Additional information

Funding

This research has been funded by the generous support of the Stollery Children’s Hospital Foundation through the Women and Children’s Health Research Institute.