Sexual Difficulties and Experiences with Health Care

Consent Form

Please carefully read through the consent form before continuing to the survey.

You are invited to participate in a study entitled “Experiences of Health Care for Asexuals and People With Sexual Difficulties” that is being conducted by Brooke J. Higginbottom.

Brooke Higginbottom is a graduate student in the department of Sociology at the University of Victoria (UVic), and you may contact her if you have further questions by email at brookehigginbottom@uvic.ca. In addition, this study is being conducted under the supervision of Dr. Thea Cacchioni and Dr. Steve Garlick. If you have any questions or concerns, you may contact Brooke’s supervisors at tcacchio@uvic.ca and sgarlick@uvic.ca.

This research is being funded by the Canada Graduate Scholarships Master’s Program (CGSM). More information about the scholarship can be found here: https://www.nserc-crsng.gc.ca

Purpose and Objectives
The purpose of this research project is to examine the ways in which both asexual people and those with difficulties with sexual functioning (such as perceived low desire, arousal, orgasm frequency or intensity, and/or the presence of sexual pain) experience their healthcare systems. Data will be collected in two ways, an online survey, and optional one-on-one interviews. The responses of both groups will be compared to see how personal and healthcare experiences differ between those who are asexual and those who have sexual difficulties. The primary research question of this project is: How do asexual people and those with related sexual difficulties experience and navigate our health care systems?

This research will expand the limited pool of research about asexuality and sexual difficulties, furthering the definitions of each concept. There has yet to be much qualitative or quantitative research that showcases how the experiences of asexuality differ from those with sexual difficulties, so the academic audience will be scholars in the fields of asexuality, sexualities, sexual difficulties, and health care. I hope that future researchers will be able to use my work when discussing the differences between the two groups. In addition, there is a lack of research that compares the ways both asexual people and those with related sexual difficulties experience and are impacted by health care, despite the similarities between both groups of people.

Importance of this Research
Research of this type is important because it will work to promote healthier viewpoints of sexual arousal, address potential stigma within the healthcare system and society, further improve understandings of asexuality, and combat misinformed assumptions. It is my hope that my research will add further depth and legitimacy to both the experiences of asexuals and those with sexual difficulties. From this project, a stronger definition of these two identities will be drawn and that this research will help society move towards normalizing lower libido.

This research will add further depth and legitimacy to both the experiences of asexuals and those with sexual difficulties. For those with sexual difficulties, this research will work towards removing the stigma and shame of these experiences, as I will highlight the normalcy of sexual difficulties. The project will aim to provide empirical knowledge of the uniqueness of asexual experiences and will help asexual people be more accepted in society and provide questioning people healthier opportunities to explore their identities. In the future, this research may contribute to further understandings of asexuality, work combat misinformation, promote healthier viewpoints of sexual arousal, and address stigma within the healthcare system and society.

Participants Selection
You are being asked to participate in this study because you:
1. Are an individual who has either been diagnosed with a sexual disorder/dysfunction or self-identifies as having some form of sexual difficulty, challenge, or disinterest.
2. Are 19 or older.

***Please note that anyone under the age of 19 will not be allowed to participate in the study.***

What is involved
The survey is hosted through the platform SurveyMonkey. The survey contains 50 questions, including Likert Scales, Yes/No questions, and “Select All That Apply” style questions. The estimated completion time is between 10-15 minutes. The survey is formatted into four sections: Demographic information, Sexual/Romantic Desire, Perceptions of Sexual Difficulties, and Health Care Experiences. Questions will ask about your feelings, perspectives, and experiences.

After completing the survey, you will be prompted on your interest in participating in an interview to expand on your experiences and perceptions. If you would like to participate in an interview, there is a link that will take you to a separate survey through which you can provide an email address for Brooke Higginbottom to contact you. To protect your anonymity, survey responses and email addresses will not be connected.

Inconvenience
To participate in this study, you will need to have access to the internet as the survey is only available online. You will also need a working proficiency in reading English, as the survey is not available in other languages. Also, ensure that you have set aside an appropriate amount of time to complete the survey (10-15 minutes).

Risks
There are some potential emotional risks to you by participating in this research. Questions focusing on sexuality, sexual health, perceptions of self, and health care experiences have the potential to relate to triggering and/or sensitive topics. While the questions in the survey do not focus on triggering topics, there is always the potential for a question to unknowingly relate to a sensitive issue. If any question or topic does lead to discomfort, you may skip the question and move on. Your consent can be withdrawn at any time, and I encourage you to end participation if needed. To prevent or to deal with these risks, links to mental health resources will be provided both here in the consent form and at the end of the survey.

2SLGBTQ+ Resources:
The Trevor Project
Trans Life Line
LGBT Hotline
Inreach

Mental Health Resources:
988 Suicide & Crisis Lifeline
Crisis Text Line
Mental Health Helplines
Find a Helpline
Befrienders Worldwide
International Suicide Hotlines

Survivors of Sexual Assault Resources:
Ending Violence - Support Services
International Sexual Assault Resources
Handbook of International Centers for Survivors of Sexual Assault and Harassment
National Sexual Assault Legal Hotline
Support Resources for Child Sexual Exploitation and Abuse

Benefits
There are potential benefits to your participation in this project. On an individual level, many people find participating in research to be an opportunity to reflect on their own perceptions and experiences. Surveys offer the chance for private contemplation, allowing participants to deeply think about topics that they have potentially not contemplated much in the past.

On a wider social level, the results of this project will be shared with the public, and from this the researcher hopes that it will foster greater conversation on this topic, allowing for others to critically think about the stigma associated with a lowered sexual drive. Hopefully, this research will work towards creating greater understanding and legitimacy for both asexual experiences and the experiences of those with sexual difficulties. This research may be used by healthcare providers who wish to adjust their practices to accommodate patients of diverse backgrounds.

There is also a gap in research as to the ways in which health care systems impact asexual people and those with sexual difficulties. This research will help expand the state of knowledge and provide insight into the ways in which medical systems potentially shape narratives around sexuality. In addition, there is a lack of research that directly compares asexual people and those with sexual difficulties, so this research will provide a more concrete analysis of the similarities and differences between the two groups through both qualitative and quantitative data.

Voluntary Participation
Your participation in this research is completely voluntary. If you decide to participate, you may withdraw at any time without any consequences or any explanation. If you choose to withdraw from the study, any data generated (i.e., survey responses) will be deleted immediately and without question. Comfort is an upmost priority. If any question leads to discomfort, do not feel the need to answer. Your consent can be withdrawn at any time.

Ongoing Consent
Your consent in this project is ongoing. This means that at any point in the study, you may withdraw your consent to have any data associated with you deleted. This study is expected to be completed by August 2025, after which the results may be disseminated in multiple ways (see below). Data will be kept until August 2028, after which it will be deleted. You may withdraw your consent at any point before the project’s completion.

Consent can be withdrawn at any time while you are filling out the survey. If needed, there is an option to ‘Clear Form’ at the bottom of the page that deletes all your responses. Also, while the survey remains open, participants may also return to the survey at a later date and edit or delete information if you decide that you no longer wish to be a part of the study; this can be done even if you have submitted your responses. The way this is done is to access the survey with exact the same device (i.e., phone, computer, IPad, etc.) and format (i.e., clicking the link or scanning the QR code). This will not work if you use Incognito Mode or something similar. If you wish to return to the survey but experience any difficulties, please email Brooke for assistance.

The survey will be closed once an entire month passes without a new response; Brooke estimates that the survey will be open for 3-4 months, during which time you may return to the survey and edit/delete your responses if desired. Once the survey closes you will need to email Brooke to withdraw your consent and have your data deleted if desired. There will be no repercussions if you decide to withdraw your consent. The researcher will ask no questions if requested to delete your data. If you have any questions or concerns regarding consent, do not hesitate to co

Anonymity
Identity protection and your anonymity regarding the reporting of this research are of extreme importance. Any identifying information, such as your name, will be changed to protect your anonymity. In addition, no revealing information will be included in the results of the study.

If you wish to participate in a follow-up interview after completing the survey, a link is provided that will take you to a separate survey for you to provide an email address. This is done to ensure that your survey responses and email address are not connected.

Confidentiality
Your confidentiality and the confidentiality of the data will be protected through the storage of raw and aggregate data on SurveyMonkey's regional Canadian data server, as well as on Brooke Higginbottom’s secure, password protected computer. Only Brooke Higginbottom and her faculty supervisors will have access to any raw data collected in this study.

***Please be advised that this research study includes data collection through a U.S.A. based company. As such, there is a possibility that information about you that is gathered for this research study may be accessed without your knowledge or consent by the U.S. government, in compliance with the U.S. Freedom Act***

Dissemination of Results
It is anticipated that the results and final product of this study will be shared with others in the following ways:
1. This project is Brooke Higginbottom’s thesis for her MA in Sociology. As such, the results will be defended in an oral presentation and will be made available to other UVic students and faculty through the University’s library collection.
2. The results of this study may be presented at scholarly meetings such as academic conferences.
3. The final project will be posted online through UVicSpace (https://dspace.library.uvic.ca/home) and may be accessed by the public.
4. Participants in the study may ask for a copy of the thesis, which will be provided upon request.
5. The results of this study may be published in an academic journal, such as the Archives of Sexual Behavior or Sexualities.

Disposal of Data
Data will be destroyed three years after the project has been completed (i.e., the final report has been written, and thesis successfully defended). The project will be completed by August 2025 at the latest, so all data will be destroyed in August 2028. Since all data is digital, it will be permanently deleted off Brooke's personal computer.

Contacts
Individuals that may be contacted regarding this study include Brooke Higginbottom, Dr. Thea Cacchioni and Dr. Steve Garlick. As the primary researcher, it is requested that your questions be directed to Brooke through her email: brookehigginbottom@uvic.ca. You may also contact Brooke’s supervisors through email: tcacchio@uvic.ca and sgarlick@uvic.ca.

In addition, you may verify the ethical approval of this study, or raise any concerns you might have, by contacting the Human Research Ethics Office at the University of Victoria by phone: (1) 250-472-4545 or by email: ethics@uvic.ca.