1. Introduction

5% of survey complete.
Dear Families,

Thank you for your willingness and time in participating in this online study on caregivers with family member with a chronic pain/chronic illness. Your contribution will help professionals to develop a better understanding of the family stress, coping styles, perceived level of support, family resiliency and the psychological well being of caregivers.

Who Can Participate: If you are a caregiver (include but not limited to parents, siblings, grandparents) who has a family member or a child with a chronic pain/chronic illness, you are invited to participate in this study.

Consent: Your proceeding with the survey will indicate your willingness and consent in participating. We understand your participation is completely voluntary and you can withdraw from participation any time even after you have started. If you stop completing the survey, any information previously completed will be deleted.

Procedure: If you decide to participate, please click "next page" to proceed. There will be a page of resources, followed by a page of quick instructions. Please complete the demographic information and all the surveys at your convenient time and pace. It may take as long as hour and a half total to complete. I understand you are busy caregivers who have a lot of life obligations, please take as much time to complete (my apology - the online survey software only allows participants to take a few breaks but only to return to the same survey from where they left within one day. Therefore, if you return to the survey after the same day you begin, you may have to start again - my sincere apology for the technical deficiency). When you complete the survey, simply click "done" and your survey will be saved.

Confidentiality: The information you shared will be kept confidential to respect the privacy of you and your child/family membmer. Please do not write any identifiable information such as your name in any where of the survey. The computer that is used to collect this survey is password-protected, locked in the office of the researcher and is only accessible to the researcher. The software used to collect this survey is also accessible by password only. Finally, the software also has a built-in feature where information will be encrypted, meaning that other people cannot trace back the information by using the “back” button.

Risks & Benefits: We anticipate minimal risks associated with participation. The only potential risk that you may encounter will be: 1) physical fatigue from completing the survey all at once; 2) feeling distress temporarily by answering some of the personal items in the survey; and 3) confidentiality. In order to address the potential fatigue, please take a few breaks in bewteen if needed. In order to prevent any potential emotional distress generated as a result of completing this survey, I would encourage you to: 1) discontinue the survey if feel distress. Information will be deleted so that no traces of any items will be saved and used. 2) contact myself or seek professional assistance from your local service provider; 3) a list of community mental health services (both national and online) will be provided next. Please be aware of the numbers and weblinks first before you start the survey so that you can have the numbers to call if you need some professional assistance any time.

You may not benefit directly from participating but your valuable contribution will help professionals to understand better about the needs of family and the child/family member so that future services can be designed.

Comments and Contact: Please put in your valuable comments at the end. If you have any questions, you can contact the researcher, Dr. Gloria Lee, University at Buffalo - State University of New York at (716) 645 2484 ext 1068 or e-mail at glee4@buffalo.edu

Yours Sincerely,

Gloria Lee