Participant, Study about Health Care for Individuals with Intersex Variations/Differences in Sex Development

Are you interested in supporting the development of effective and evidence-informed health care support for Canadians with variations in sex development, at times referred to as intersex? Please consider participating in this focus group to discuss your experiences seeking health care and transitions in health care during early adolescence or adulthood.

Open to: Patient partners across the province

Lead Organization or Department

University of Northern BC

Aim

The goal of this study is to understand what the current experiences of health care transitions for both ‘providers of health care’ and ‘individuals with variations in sex development’ are.

Level of Engagement

This opportunity is at the level of consult on the spectrum of engagement. The promise to you is that the health care partner will listen to and acknowledge your ideas and concerns, and provide feedback on how your input affected the decision.

Eligibility

• Patient partners 16 or older from across BC.
• Participants should have experience either receiving care OR providing care or have related experience (policy, support network, etc.)
• Comfort telling their story

Logistics

Vacancies: 20-25 Location, date, time and frequency: All located in Vancouver, BC – specific day locations to be confirmed, with focus groups lasting for 3 hours. PATIENTS Thursday October 24 6:00 pm – 9:00 pm Friday October 25 9:00 am – 12:00 pm Friday October 25 2:00 pm – 5:00 pm HEALTH CARE PROVIDERS Thursday October 24 2:00pm – 5:00pm Saturday October 26 9:00 am – 12:00 pm Teleconference option is also available, please let the study team know if you want to use this option.

Reimbursement

We will pay reasonable travel costs (bus or taxi fare or reasonable airfare, parking, telephone provider cost, lunch) to participate in the workshop if this is delivered in a face-to-face format. Pre-approval is required.

Background

The goal of this study is to understand what the current experiences of health care transitions for both ‘providers of health care’ and ‘individuals with variations in sex development’ living in BC are. With this knowledge we hope to better understand how to develop timely, effective, and evidence-informed transition health care for Canadians with variations in sex development throughout their lives. Also, this study aims to analyze existing current knowledge and evidence of transition care provided ‘by health care’ and ‘received by’ individuals with intersex in order to design a pilot survey looking at transition care for Canadians with variations in sex development. Patients partners consulted for this research will be asked to discuss questions in a group meeting/focus group format. Following the consultation events, participants may be asked if they wish to participate in a reference group which will meet several times in the future (in person, or by phone/skype) – there is no obligation to participate in the reference group. Some of the questions we ask may be sensitive or personal. There is no obligation to answer any question you do not want to. If, at any point in the study, you feel uncomfortable or upset and wish to end your participation, please notify the researcher immediately and your wishes will be respected. Potential risks identified include emotional/psychological risk associated with talking about potentially sensitive subject matter (e.g. may feel uncomfortable, upset or embarrassed). A social risk that could arise is a loss of privacy; any participant that attends the stakeholder event / reference focus group meeting cannot be guaranteed anonymity based on the fact that other participants are present. Consultation sessions are separated into two groups to support individual comfort in discussing these issues – one meeting group(s) is directed to those who have been patients, and another group(s) aimed at those who fall into a health provider role. We expect group sessions may have anywhere from 5-20 participants. For a copy of the detailed patient information and consent form, please contact us at transitionstudy@unbc.ca. To see who we are, you can check out our team bios at www.facebook.com/lifecyclehealthcare or request them via the email above. We are a group of researchers from different cities in Canada, the UK and Australia, being led by Dr. Caroline Sanders in the Faculty of Nursing at the University of Northern BC.

Health Care Partner Contact Information

Carol Stathers
Engagement Leader, Patient and Public Engagement | Okanagan, Interior Region
778.516.3308
cstathers@bcpsqc.ca