Study Synopsis

Study Title:
COVID-19 Vaccine Hesitancy in the Sickle Cell Disease/Black Community: At the Intersection of Ethno-racial and Chronic Disease-related Factors.

Principal Investigator:
Dr Melanie Kirby-Allen, Division of Haematology / Oncology, Hospital for Sick Children. PH: 416-813-7606

Co-Investigators:
Dr Suzan Williams, Division of Haematology / Oncology, Hospital for Sick Children; Lanre Tunji-Ajayi, Sickle Cell Awareness Group of Ontario (SCAGO)

Sponsor/Funder(s):
Sickle Cell Awareness Group of Ontario / Public Health Agency of Canada.

Proposed Study and Rationale.
The study will examine the reluctance and willingness of individuals with SCD (Sickle Cell Disease) and members of the Black community to be vaccinated against COVID-19 in Ontario. The results will provide information on COVID-19 vaccination hesitancy, and also help us to understand why those who are vaccinated are willing to do so.  The availability of this information could help to enhance efforts to improve vaccination rates among members of these populations.

Primary Objectives:

1. To determine the level of hesitancy to the COVID-19 vaccine within each stated community
2. To identify the most prevalent factors contributing to vaccine hesitancy within each stated community
3. To learn reasons for vaccine acceptance from vaccinated community members

Study Design & Population:

Cross-sectional, observational design:

• Canadians with SCD
• Black Canadians without SCD

Inclusion Criteria:

• Over the age of 18
• Able to provide informed consent and assent
• Parents on behalf of children at or above the eligible vaccine age of 5 years. (Children will not be enrolled or interviewed directly.)
• Identify as having Sickle Cell Disease
• Identify as Black
• Reside in Canada.

• Enrollment of Study Subjects:
  Enrollment for the study may take place at hospital clinics, community health centres and in partnership with community organizations that provide services to Black-identifying individuals with and without SCD.

  Assessment of Impact:
  The study will contribute to the assessment of the impact of non-study-related educational measures that are targeted at members of the Sickle cell disease community.  No specific educational intervention is included in the study.  Surveys and focus groups will be repeated using sample participants from the original focus groups.

  What will be done?
  Participants will be invited to take part in an online or in-person (at SickKids hospital) questionnaire survey or a focus group. The research team will ask questions that are related to COVID-19 vaccines. The goals would be to find out the reasons why you are not vaccinated or if you are vaccinated, the reasons that encouraged you to make the decision to be vaccinated. Those that take part in the survey are still eligible to participate in the focus group.

  Audio recording:
  The focus group will be audio-recorded. The audio recording will be transcribed after the focus group and will be analyzed by the research team. All identifying information will not be in the recording. After it is transcribed, the audio will be destroyed.

  Are study participants paid to be in the study?
  As a token of appreciation, participants in the focus group sessions will be offered a gift card for their participation