When Grace was a young Crohn’s disease patient, she found comfort learning about all things IBD, and research turned into her passion. Today, her independent research project for her degree is an IRB approved study on IBD and women’s health.
As Grace looked into existing literature, she found a great deal on the scientific side of Crohn’s and Colitis from pregnancy through childbirth, but discovered there wasn’t very much qualitative research (i.e. data on experiences, behaviors, and meanings—the “why”) on female IBD patients across motherhood, even though IBD is most commonly diagnosed during reproductive years. She also discovered that women with IBD commonly report higher rates of psychological distress than men with IBD and wondered: could this have to do with how uncertain it can be for women to navigate a motherhood journey with an unpredictable illness like IBD?
Grace was inspired to learn about women’s decision-making and emotional experiences throughout the distinct aspects of motherhood with IBD, especially beyond conception and pregnancy. How do women talk to their children about their disease? Does parenting affect coping strategies with the illness? How do women go about making various decisions around the uncertainties of illness—such as whether to have more children or whether to breastfeed? And, ultimately, how do they feel when faced with each of these decisions?
Understanding and addressing the challenges associated with navigating IBD and motherhood is essential for improving both mental wellbeing and disease outcomes. Grace’s goal is to highlight the need for increased reproductive counseling or routine pregnancy programs specific to IBD.
Purpose of the Research
Women in their reproductive years that have inflammatory bowel disease have unique choices and decisions with regards to maternity. The primary purpose of this research project is to discover how experiences with IBD affect family planning, everyday motherhood, and decisions throughout maternity, and the emotional impacts that occur both pre- and post-partum for women with inflammatory bowel disease.
Are You Interested in Participating in this Research?
| ELIGIBILITY Must be an English-speaking female with either Crohn’s or Colitis and at least 18 years of age Must be one of the following: currently a mother with IBD (either biological or through adoption). Diagnosis prior to having a child preferred. |
If you qualify, you can take the survey here: https://docs.google.com/forms/d/e/1FAIpQLSfdLKep51CtJXFWlqekv7c6Ui_7tjjfKQkFmVOEsBEJGD8hog/viewform?usp=header
Questions? Contact Grace E. Hubbel at geh7 @ geneseo . edu
What to Expect
For those interested in taking the survey, just copy the link provided into your browser or click the link to the survey. Before beginning, you will be provided information on the purpose of the study followed by providing informed consent. Thoughtful responses to the survey should ideally take anywhere between 30-80 minutes to complete.
For those interested in being interviewed, the researcher would provide information on the purpose of the study, describe the research methods, and a day and time will be chosen to connect. The interview would range from 40-60 minutes. The types of questions to expect would be related to emotional experiences of family planning, postpartum, and decision-making within motherhood that has been influenced by having IBD.
Participants can do both a survey and interview if they desire.
Statement of Confidentiality
Participation is voluntary and all information you provide is confidential. Information such as names will not be included in any aspects of the final project. Information collected will not be used or distributed for any other studies. Subjects may discontinue participation at any time.
About the Researcher
My name is Grace Hubbel and I am a recent graduate from the State University of New York at Geneseo with a double major in Philosophy & Sociomedical Sciences with a minor in Human Development.
I am very passionate about research awareness for the female IBD experiences!
