WHO IS CONDUCTING THE STUDY?
This study is being conducted by Dr. Natasha Benson and Dr. Laura Sauvé. Dr. Benson is a pediatric resident at BC Children’s Hospital and has a Medical Degree from the University of British Columbia. Dr. Sauvé is a Pediatric Infectious Disease Specialist, Investigator and Clinical Assistant Professor at BC Children’s Hospital and has a Master’s degree in public health. Dr. Sauvé is experienced in health services research, particularly pediatric HIV and perinatal infections.

WHAT IS THE PURPOSE OF THE STUDY?
The purpose of this study is to better understand the perceptions of families who have lived experience of congenital CMV (cCMV) regarding current models of care, including access and quality of care, unmet needs in the way health services are currently delivered and recommendations for improved overall care. This is an important quality of care initiative and the information gathered from this feedback will be used to inform and strengthen the development of a multidisciplinary program between BC Women’s and BC Children’s Hospital to improve congenital CMV care.

WHAT DOES THE STUDY INVOLVE?
On behalf of BC Women’s and BC Children’s Hospital, we would like to ask you confidential questions in this survey to better understand the perceptions of families and caregivers who have experience caring for children affected by cCMV. Specifically, we would like to ask questions around your experience with the current models of care, including access and quality of care, unmet needs in the way health services are currently delivered and recommendations for improving cCMV care.

It will take 5-10 minutes to complete the survey. The deadline to complete this survey is January 7, 2022.

Some of the questions in this survey may be about your personal information. We hope that collecting this information can lead to positive changes which includes revealing inequities and relationships between demographic categories. The Provincial Health Services Authority (PHSA) respects the values and culture of all patients.

We are asking you to share the following personal information:

  • Health information
  • Age of child at time of diagnosis
  • Age of child currently
  • Geographic location
  • Level of education
  • Personal views/opinions

WILL MY TAKING PART IN THIS STUDY BE KEPT CONFIDENTIAL?
Only the study team and the technical support team at the PHSA will access your information. The results of this survey are confidential. When results are reported, presented, or published the project team will remove any information that could identify you or anyone else. The team may use a quote from your comments if provided. Survey data will be stored securely at PHSA for one year.

Your personal information is protected by our privacy law in BC. This law is called the Freedom of Information and Protection of Privacy Act (FIPPA). We are collecting your information under section 26 (e) of FIPPA.

WHO DO I CONTACT IF I HAVE QUESTIONS ABOUT THE STUDY?
If you have questions about the survey or your information please contact: Natasha Benson, Research Manager, BC Children’s Hospital, natasha.benson@phsa.ca.

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