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Family Research Questionnaire

Letter of Information "Family Cohesion and Flexibility"

Thank you for your interest in this study. Please read the letter of information below, and indicate whether you would like to participate in this study.


PRIMARY INVESTIGATORS:
Maya Gupta, MSc, Queen's University; Dr. Christopher Bowie, PhD, CPsych, Queen's University; Dr. Stephanie McDermid Vaz, PhD, CPsych, McMaster University, St. Joseph’s Healthcare Hamilton, and Hamilton Health Sciences

BACKGROUND INFORMATION:

You are being invited to participate in a research study directed by Maya Gupta, M.Sc., under the supervision of Dr. Christopher Bowie. The purpose of this study is to understand family system factors that are associated with family functioning, specifically family cohesion and coping, in families with an individual with early episode psychosis. This study is being conducted with funds provided to Dr. Bowie by Queen’s University. This study has been granted clearance according to the recommended principles of Canadian ethics guidelines, and Queen's policies.
 
DETAILS OF THE STUDY:

1.   What the aim of the study is: 

The purpose of this study is to understand the factors that initiate and maintain adaptive family functioning in families with an individual with early episode psychosis.
 

2.   Description study procedures:

If you consent to participate in this study, you will be asked a series of questions about yourself and your family, including family history, use of informal and formal support systems, caregiver experiences, coping strategies, and family satisfaction. You have the option to complete this survey either (1) online, (2) by mail, or (3) by phone. The survey will take approximately 30 to 40 minutes of your time. The estimated sample size for this study is 150 participants.
 

3.   Risks:

Some people experience psychological or emotional distress from answering questions about personal or sensitive issues. If you experience distress at any time, you can skip a question or stop the survey. If you decide that you do not want to complete the survey, you can stop at any time without penalty.
 

4.   Benefits:

Participation in this study will contribute to research on family functioning and family intervention in early episode psychosis.
 

5.   Inclusions:

You can participate in this study if you are the primary caregiver for an individual with early episode psychosis. Primary caregivers can be biological parents, foster parents, or extended family such as aunts, uncles, or grandparents. To be included in this study, you need to have interacted with your family member with early episode psychosis regularly (i.e., electronic, phone, or in-person contact about once every two weeks) since their illness onset, and either live with an individual with early episode psychosis or perform regular caregiver activities (e.g., groceries, household chores, scheduling appointments) for this individual.
 

6.   Confidentiality:

All information obtained during the course of this study is strictly confidential and your anonymity will be protected at all times. Any personal identifying information (e.g., name, date of birth) will NOT be linked to your survey responses. To help us ensure confidentiality, please do not put your name on any of the research questionnaire sheets. Only Dr. Christopher Bowie’s research staff will have access to your data. The data may also be published in professional journals or presented at scientific conferences, but any such presentations will be of general findings and will not breach individual confidentiality. Should you be interested, you are entitled to a copy of the findings. The data will only be used for this project and will be destroyed after 10 years.
 

7.   Voluntary nature of study/Freedom to withdraw or participate:

Your participation in this study is voluntary. You may withdraw from this study at any time without penalty. Although it be would be greatly appreciated if you would answer all material as frankly as possible, you should not feel obliged to answer any material that you find objectionable or that makes you feel uncomfortable. If you skip any questions, you can still submit your survey responses and we will only analyze data from questions that have been answered. If you decide to withdraw from the study and do not want to submit your survey responses you may do so without penalty. If you do not submit your responses we will not have access to them and therefore your data will not be used.
 
8.   Compensation:

The CPD Lab will donate $10 to the Schizophrenia Society of Canada for each person who participates in this study.
 

9.   SUBJECT STATEMENT AND SIGNATURE SECTION:
 
I have read and understand the consent form for this study. I have had the purposes and procedures of this study explained to me. I have been given sufficient time to consider the above information and to seek advice if I chose to do so. I am voluntarily signing this form. I will receive a copy of this consent form for my information.

If at any time I have further questions, problems or adverse events, I can contact
 
      Graduate Student: Maya Gupta at maya.gupta@queensu.ca or 613-533-6000 ext. 78478 or
      Principal Investigator: Dr. Christopher Bowie at bowiec@queensu.ca or 613-533-3347

Any ethical concerns about the study may be directed to the Chair of the General Research Ethics Board at chair.GREB@queensu.ca or 613-533-6081 or the Office of the Chair at the Hamilton Integrated REB at (905) 521 – 2100, extension 42013.
  
Thank you. Your interest in participating in this research study is greatly appreciated.

By selecting “yes” below, I am indicating that I agree to participate in this study.

I agree to participate in this study:

Kingston, Ontario, Canada. K7L 3N6. 613.533.2000