If there are any questions or concerns regarding the survey, please feel free to contact the resident researcher, Dr. Janessa Mah at janessa.mah@usask.ca.

PARTICIPANT INFORMATION AND CONSENT FORM

Study Title: Parent/caregiver and patients’ experiences with spasticity management in Southern Saskatchewan in the pediatric and young adult population

Principal Investigator:

Kyra Kane, BSc.PT, MSc, PhD

  • Senior Physical Therapist – Children’s Program, kyra.kane@saskhealthauthority.ca

Co-Investigators:

Muhammad Siddiqui, MBBS, MSc, PhD

  • Research Scientist, Research Performance & Support, muhammad.siddiqui@saskhealthauthority.ca

Jacqueline Kraushaar, MD FRCPC CSCN Diplomate (EMG)

Shane Wunder, MD FRCPC CSCN Diplomate (EMG)

  • Clinical Assistant Professor, Physical Medicine & Rehabilitation, shane.wunder@saskhealthauthority.ca

Wendy Chrusch, MD FRCPC CSCN Diplomate (EMG)

  • Clinical Assistant Professor, Physical Medicine & Rehabilitation, wendy.chrusch@saskhealthauthority.ca

Resident Investigator:

Janessa Mah, BSc, MD

  • PGY-3 Physical Medicine & Rehabilitation, University of Saskatchewan, janessa.mah@usask.ca

INTRODUCTION

  • You and your child are invited to take part in this research study because your child is currently being treated or has previously received treatment for spasticity in Southern Saskatchewan.

WHY IS THIS STUDY BEING DONE?

  • We are interested in learning about how spasticity is currently managed for pediatric patients in Southern Saskatchewan, any gaps in care, and how parents/caregivers and patients believe spasticity care can be better managed.

WHAT DOES THE STUDY INVOLVE?

  • You (and approximately 30 others) will be asked to complete an online questionnaire about your child’s spasticity and the management of it.
  • It will take between 10-20 minutes to complete. If you are unable to complete the entire survey in one sitting, there is the option to "Save & Return Later". Please write down the "Return Code" provided and bookmark the link OR enter your email for the new survey link to be emailed to you.
  • The questionnaire will ask you and your child questions about the treatment received, satisfaction with care, any barriers experienced with care, and if you have any suggestions to improve care.
  • All responses are anonymous and will not be linked to you or your child.
  • At the end of the questionnaire, there is an optional section for your child to answer some questions on their own if they are able, or with your help.

WHAT ARE THE BENEFITS OF PARTICIPATING IN THIS STUDY?

  • If you complete the survey, you will be entered to win 1 of 10 $25 gift card to Amazon.ca or Starbucks.

ARE THERE POSSIBLE RISKS AND DISCOMFORTS?

  • There are no anticipated risks if you decide to participate in this study.

WHAT HAPPENS IF I DECIDE TO WITHDRAW?

  • Your participation in this research is voluntary.
  • You may withdraw from this study at any time, without consequences. You do not have to provide a reason. This will not affect your child’s care in any way.
  • Your right to withdraw data from the study will apply until the data have been pooled. After this time, it may not be possible to withdraw your data.

CONFIDENTIALITY

  • Survey responses are collected anonymously.
  • In Saskatchewan, the Health Information Protection Act (HIPA) defines how the privacy of your personal health information must be maintained.
  • If you enter your email address for the draw or to receive results of the study, your email address will be stored separately from the survey responses on a password protected computer. The electronic file containing the email addresses will be deleted once the gift card draw has occurred.
  • Data will be kept confidential in a password protected excel file, on a password protected computer in a locked office. Data will be maintained for at least 5 years post study. All data will be destroyed appropriately using permanent deletion software.
  • The results of this study may be presented in a scientific meeting or published, but your identity will not be disclosed.

HOW CAN I OBTAIN MORE INFORMATION ABOUT THIS STUDY?

  • If you would like a summary of the study findings, you may enter your email address at the end of the survey. This will take you to a separate survey and will not be linked to the information you have provided. You will be sent the results of the study when it is completed.

WHO DO I CONTACT IF I HAVE QUESTIONS ABOUT THE STUDY?

  • If you have any questions about the study at any time, or would like to see the study results, please contact:

This study has been reviewed and approved on ethical grounds by the Research Ethics Board (REB) of the former Regina Qu’Appelle Health Region (RQHR). If you have any questions or concerns about your rights as a research participant, you may contact the Chair of the Research Ethics Board at (306) 766-5533. Out-of-town participants may call collect.

CONSENT TO PARTICIPATE

If you choose to participate, by answering the following questions, your consent is implied.

If you choose to not participate, exit the window now.

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