About the Project
Project PoppySeed is an exploration of perinatal grief resulting from the loss of a pregnancy or baby to anencephaly. This project came about when my sister’s first child was diagnosed with anencephaly during her 20 week ultrasound appointment. My sister and her husband chose to carry her daughter to term, wishing to donate her organs, and asked me to be her advocate and help them fulfill this wish.
At the time, I was a Master’s prepared Registered Nurse working in the operating room. I had participated in multiple organ procurement surgeries and was confident I would succeed in fulfilling my sister and her husband’s wishes. However, as time progressed, I encountered many roadblocks, and was unable to find the necessary resources despite long days and nights making phone call after phone call. My certainty in fulfilling this request began to waiver.
One day I came upon Purposeful Gift, a foundation dedicated to helping parents wishing to donate the organs of their baby with anencephaly. Bethany Conkel, founder of the foundation and mother to a son with anencephaly, was able to find donation opportunities for my niece.
This experience caused me to wonder how individuals with no medical background could negotiate such an involved, complex process. Knowing some good came from the heartbreak of losing my niece brought great comfort to my sister, her husband, and our entire family. However, what about all the other parents out there? Who is helping them?
As I began my doctoral studies, I decided to dedicate my dissertation and future career of research to learning how nurses and doctors can better help parents losing a baby to anencephaly or other congenital anomalies. Project PoppySeed: Experiencing Anencephaly, a Parent’s Perspective is the first step in this journey. I wish to know what parents experience during this time, thus learning how their experience impacts their lives in the future.
Project PoppySeed: Experiencing Anencephaly, a Parent’s Perspective
This research study is being done to better understand what parents experience during a pregnancy complicated by anencephaly, as very little is currently known. Gaining a better understanding of what parents go through during this difficult time will help doctors and nurses understand how to provide more appropriate, sensitive, and patient-centered care. If you have lost a pregnancy or baby to anencephaly and meet the Eligibility Criteria, you are invited to participate in Project PoppySeed research projects. This current study involves an interview which will take about one hour. However, we wish to know your story as you wish to share it, and will adjust the length of your interview to allow you to share your story according to your needs. It may take more than one interview for you to share us your story, if that is the case, we will set up a second or third interview as necessary. You will also be asked to complete the Perinatal Grief Intensity Scale (14 questions) and a demographic questionnaire (17 questions).
If you are interested in joining Project PoppySeed: Experiencing Anencephaly, a Parent’s Perspective, you must be able to answer “yes” to the following questions:
- Have you had a pregnancy complicate by anencephaly?
- Are you over 18 years of age?
- Can you read, write, and speak English fluently?
Pregnant individuals may not participate in this study.
Common questions concerning eligibility:
Q: Are only women eligible to participate in this study?
A: No, men are an important part of this story, and welcome to join.
Q: My or my partner’s pregnancy complicated by anencephaly occurred years ago, is there a cutoff point for those eligible to participate?
A: There is no cutoff for eligibility based on the time which has passed since your pregnancy complicated by anencephaly.
Q: My or my partner’s pregnancy complicated by anencephaly was terminated, am I still eligible?
A: Yes. Pregnancies complicated by anencephaly which were carried to term, terminated, or miscarried are all eligible to participate.
Q: I meet the eligibility criteria and wish to participate, however, my partner is not interested in joining the study, am I still eligible?
A: Yes, your participation in the study is not dependent upon your partner also joining.
Q: I or my partner lost a baby to a congenital anomaly other than anencephaly, am I still eligible to participate?
A: No, this study is focusing specifically on perinatal loss associated with anencephaly. While your loss is no less devastating, you will not be eligible for this study. However, you may be eligible for future studies. If you are interested in joining the e-mail list, please sign up here. Also, there are many perinatal grief resources available to you.
Q: My partner and I are no longer together, am I still eligible to join?
A: Yes, it is not a study requirement for you and your partner to be together in order to join this study.If you have further questions, please e-mail me at firstname.lastname@example.org
If you take part in the study, you will be asked to tell us about your experience of having a pregnancy complicated by anencephaly. We will gather information in the following ways:
- Interview. During your interview, you and the interviewer will be the only persons. You will be asked to tell the interviewer about your experience of having a pregnancy complicated by anencephaly. The interviewer may ask you “clarifying questions,” which means asking a question to assure they understand what you are saying.
- The length of time each interview will take may vary. The typical time each interview will take is approximately one hour. However, we wish to understand your entire story, and interviews may take more or less than one hour. It may also take more than one interview to tell your story.
- During the interview, you will be asked to pick a name for the interviewer to call you (a pseudonym) for the remainder of the study. This is to protect your identity. If you would rather we not refer to you by another name, we will use non-descriptive terms such as he/she, or they.
- You may decline to share certain information if you wish. If you become distressed at any point during the interview, or if you wish the interview to be over, we will stop the interview. There will be no penalty or consequence for not finishing the study.
- Each interview will be audio recorded by the interviewer and later transcribed by a professional, university approved transcriptionist. All your identifying information will be removed from the audio recording prior to being transcribed.
- Perinatal Grief Intensity Scale (PGIS): The PGIS is a 14 item questionnaire which helps healthcare professionals such as doctors and nurses better recognize those who are likely to have intense grief after an early or late pregnancy loss or death of an infant.
- The length of time this will take to complete is approximately 15 minutes. However, this time approximation may vary for each person.
- Demographic Questionnaire: This is a 17 item questionnaire to better help the research team understand your gender, age, race, and other related characteristics. These questions are important to answer as we attempt to better understand how to help parents who are experiencing a pregnancy complicated by anencephaly.
- The length of time to complete this questionnaire is approximately 20 minutes, however, the time may vary from person to person.
How can I participate in this study?
If you or your partner have lost a pregnancy or baby to anencephaly, are able to read, write, and speak English, and are not currently pregnant, you are eligible to participate in this study. If you are interested or wish to learn more, please feel free to contact Shandeigh Berry through phone (360) 880-1097 or e-mail email@example.com.
How can I learn of other research opportunities?
If you are interested in learning more about future research opportunities, you may sign up to receive an e-mail notification of upcoming studies.