Invalidation of Medical Symptoms by Healthcare Providers and Partners of Individuals with Endometriosis
Purpose: The patient-physician relationship in endometriosis is significant, particularly for patients struggling to make sense of their symptoms, and is positively related to health outcomes. A positive patient-physician relationship and greater perceived physician support is therefore paramount to the overall health of patients. Understanding and mapping negative types of patient-provider interaction will help identify appropriate targets for intervention at the patient, provider, and system level. We anticipate that this work will provide the foundation for the future development and testing of communication skills training for non-endometriosis gynecologists that may help prevent some of the psychological harm that may ensue for patients during their long and frustrating search for a diagnosis. Additionally, these findings will allow mental health specialists a framework with which to understand the emotional struggles and psychological burden of patients with endometriosis that are specific to these negative patient-provider interactions, which can guide therapeutic aims.
Methods: This is an anonymous online research survey in which participants will fill out questions about their demographics, endometriosis symptoms, negative patient-provider experiences, and romantic relationships (will take approximately 30 minutes to complete).
To participate in this study, please visit the following URL: https://rutgers.ca1.qualtrics.com/jfe/form/SV_86TnTKNLxI8k3DD
Eligibility and Participation Criteria: Participants must have a diagnosis of endometriosis (suspected or surgically-confirmed) and must be at least 18 years old. Participants can be from outside the United States and do not have to currently be in a romantic relationship to complete the survey.
Contact:
Allyson C. Bontempo, M.C.I.S., PhD Candidate
Rutgers, School of Communication and Information
acb232@scarletmail.rutgers.edu
The Effect of Reproductive Hardship on Individual and Relational Identities
Purpose: To understand the experience of reproductive difficulty and its effects on people’s identity and relationships.
Eligibility and Participation Criteria:
You must:
- Be over the age of 18;
- Be in a committed romantic relationship in which you have not yet conceived a child;
- Have been trying to conceive unsuccessfully for at least one year, OR you and/or your partner have sought medical assistance to become pregnant, OR you and/or your partner have been medically diagnosed with infertility;
- Have access to an Internet connected device;
- Be able to read and write in English.
Methods: Anonymous online survey (will take approximately 30 minutes to complete).
To participate in this study, please visit the following URL:
https://rutgers.ca1.qualtrics.com/jfe/form/SV_3qr3NHjIX6raj7T
Contact:
Deborah Yoon, PhD Candidate
Rutgers, School of Communication and Information
deborah.yoon@rutgers.edu
The ROSE Study
Purpose: A team of committed Feinstein Institute researchers and professionals are conducting the Research OutSmarts Endometriosis (ROSE) study. The goal of the ROSE study is to investigate the causes of endometriosis and bring improved diagnostics and treatments for women with endometriosis.
Time Commitment for Participant: Variable. Approximately 2-4hrs (telephonic screening and online paperwork)
Principal Investigator Contact and Institution: Feinstein Institute for Medical Research 516-562-3636
Citizen Endo
Purpose: The goal of the Citizen Endo project is to bridge the gap between what endometriosis patients actually experience and how doctors characterize the disease. As such, we aim to phenotype endometriosis according to patient's reports of their disease. This will help identify different sub-types of endometriosis. Researchers have already found that there is more than one phenotype of endometriosis by looking at histological samples from excised lesions, but these phenotypes do no correlate with disease stage or symptom severity. Through our app Phendo, a research and self-management smartphone app for endometriosis patients to self-track their symptoms, we collect data on how patients experience the disease day to day. With this data we can begin to identify similar groups of patients based on shared signs and symptoms. Having this information will ultimately enable better understanding of the disease and identifying more precise treatment and self-management strategies for women with endometriosis. More information can be found here.
Phendo App is available for both IOS and Android:
iOS: https://itunes.apple.com/us/ap
Contact:
citizenendo@columbia.edu, Department of Biomedical Informatics, Columbia University Medical Center.
Reconfiguring Visions of Inevitable Maternity: Incorporating Infertility into Understandings of Womanhood
Purpose: Understanding the way in which heteronormative expectations of womanhood affect infertile women’s understandings of self, agency, and gender identity in the United States.
Eligibility and Participation: Participation involves an informal phone or Skype interview regarding experience with infertility or childlessness, hopes and concerns, reflections on cultural attitudes about women and gender in America, and perhaps, other related topics. After the interview, participants will be invited, but are not mandated, to continue study involvement through interactions with the researcher in activities such as a doctor appointment. Eligible women are Americans who are infertile, have had a hysterectomy, or face a prognosis of infertility.
Contact: Sasha Martin, Brandeis University
707-738-1453, slmartin@brandeis.edu
