EXPLORING DIABETES KNOWLEDGE, RISK PERCEPTION OF DEVELOPING DIABETES AND QUALITY OF LIFE AMONGST SECOND GENERATIONAL SOUTH ASIAN YOUNG ADULTS CARING FOR PARENTS WITH TYPE 2 DIABETES MELLITUS (T2DM).


Preamble Statement

This survey is administered by by Angela Koipuram, RN, BScN, MScN Student and Diana Sherifali RN, PhD, CDE, at McMaster University’s School of Nursing. The purpose of the study is to explore second generational immigrant SAP’s knowledge of diabetes, their quality of life, and risk perception of developing diabetes compared to their actual risk of developing diabetes. Information gathered during this survey will be written up as a thesis. What we learn from this survey can be used to develop effective interventions tailored to this population in an effort to promote upstream diabetes prevention programs.

 
To learn more about the survey and the researcher’s study, particularly in terms of any associated risks or harms associated with the survey, how confidentiality and anonymity will be handled, withdrawal procedures, incentives that are promised, how to obtain information about the survey’s results, how to find helpful resources should the survey make you uncomfortable or upset etc. please read the accompanying letter of information.
 
This survey should take approximately 15-20 minutes long to complete.  To be eligible to complete this survey  the following cirteria must be  met: 
  1.  You must be between the ages 18-29; your  parent(s) must have been diagnosed with type 2 diabetes mellitus (for at least 1 year)
  2. Your parent(s) must have immigrated to Canada
  3. You are of South Asian descent (i.e. Bangladesh, India, Pakistan, Sri Lanka, Bhutan, Nepal, or Maldives)
  4. You must speak English. 
  5. You must live in Canada
  6. You must provides unpaid or arranges for paid or unpaid help to help manage your parents’ diabetes (i.e. driving to appointments, checking blood sugars, promoting exercise, helping adhere to a diabetic diet etc.)

Procedures involved in the Research:

If you agree to be in this study, you will be asked to do the following:

  1. Complete a survey, the 24-item Diabetes Knowledge Questionnaire (DKQ) to measure diabetes related knowledge. This will take approximately 5 minutes.
  2. Complete the Risk Perception of Developing Diabetes Questionnaire (RPS-DD) to evaluate one’s risk perception of developing diabetes. The time required to complete this survey will be approximately 5 minutes.
  3. Complete the World Health Organization Quality of Life (WHO 26-item QOL) questionnaire. The time required to complete this survey will be approximately 5 minutes.
  4. Complete the Canadian Diabetes Risk Assessment Questionnaire (CANRISC). The time required to complete this survey will be approximately 3 minutes.

Potential Harms, Risks or Discomforts:

There is no potential for physical harm during your participation in this study. Your surveys and questionnaires will be reviewed in this study, and extensive measures will be undertaken to protect your privacy. Also, all results will be anonymous and kept confidential.

Reimbursement

In appreciation of the time you have given to this study, you can enter your name in one of 3 draws to win a 50$ gift card. Your odds of winning one of the prizes are based on the number of individuals who participate in the study. Information collected to draw for the prizes will not be linked to the study data in any way, and this identifying information will be stored separately, and then destroyed after the prizes have been provided.

Confidentiality

All study staff are committed to respecting your privacy. No other persons will have access to questionnaire information or identifying information without your consent, unless required by law. All information collected in this study shall be kept strictly confidential and any information that could identify you will not be published. All information that identifies you, both paper copy and electronic information, will be kept confidential and stored and locked in a secure place that only the study staff will be able to access. The information obtained from the participant will be kept in a password protected computer file. Electronic files will be stored securely on institutional networks or securely on any portable electronic devices. No information identifying you will be allowed off site in any form.

Participation:

Your participation in this study is voluntary. Furthermore, upon your decision to participate you may withdraw from the study at any time. Discontinuation of the study will be of no consequence. Once you have submitted your responses for this anonymous survey: your answers will be put into a database and will not be identifiable to you. This means that once you have submitted your survey, your responses cannot be withdrawn from the study because we will not be able to identify which responses are yours.

Information about the Study Results:

 We expect to have this study completed by approximately September 2017. If you would like a brief summary of the results, please let me know how you would like it sent to you.

You are free to complete this survey or not. If you have any concerns or questions about your rights as a participant or about the way the study is being conducted, please contact HIREB.

 

This survey is part of a study that has been reviewed and cleared by the Hamilton Integrated Research Ethics Board (HiREB). The HiREB protocol number associated with this survey is [insert the MREB protocol number, e.g. HiREB 2016-355]. The HIREB is responsible for ensuring that participants are informed of the risks associated with the research, and that participants are free to decide if participation is right for them. If you have any questions about your rights as a research participant, please call the Office of the Chair, Hamilton Integrated Research Ethics Board at 905.521.2100 x 42013.

A note on privacy
This survey is anonymous.
The record of your survey responses does not contain any identifying information about you, unless a specific survey question explicitly asked for it. If you used an identifying token to access this survey, please rest assured that this token will not be stored together with your responses. It is managed in a separate database and will only be updated to indicate whether you did (or did not) complete this survey. There is no way of matching identification tokens with survey responses.