Dissertation Study Enrollment:
Mary Crombez, Madonna University Doctoral Candidate, is working on a new research study to complete a doctorate in Doctor of Education (EdD) in Leadership and Innovation. There are two components to her research that are open for enrollment. One is an online survey open to parents with a child with PANS PANDAS. The other is a more extensive interview with parent and teacher pairs for students (Kindergarten through 8th Grade) diagnosed with/suspected of having PANDAS/PANS. See below for details on both research components.
Online Survey
Parent perspectives of the effectiveness of academic accommodations and behavior supports for students diagnosed with/suspected of having PANDAS/PANS.
The online survey will help Mary Crombez to capture more data than the teacher component (see below) can provide.
Purpose of survey:
To obtain information about the perspectives of parents regarding the effectiveness of academic accommodations and behavioral supports for children diagnosed with/suspected of having PANDAS/PANS.
Link to survey
https://forms.gle/d6mDh3vJQ6kM2TW37
Who can participate?
- All parents of children with PANDAS/PANS are invited to participate.
- There are no age restrictions (you may report on any child from birth through adulthood).
- There are no grade level requirements (the student may be in childcare, preschool, elementary school, middle school, high school, or post-secondary).
- You may report about any time in your child’s life when PANDAS/PANS may have influenced their education in any way.
- There are no restrictions on types of schooling (private, public, homeschooling, unschooling, boarding school, etc).
- There are no restrictions on place of residence (residents of any country are eligible to participate).
- The human investigations board at Madonna University has given their approval for this study to proceed.
About the survey
There are two parts to this study:
- Part 1-an anonymous survey (the link takes you directly to the survey including the information and consent to participate)
- Part 2-at the end of the anonymous survey you are given an option to email me and complete an additional information and consent form to participate in an interview.
The benefits of participating include:
- being able to share your story about your child’s education;
- providing first-person knowledge of your child’s educational experience and
- helping the education community better understand parents’ perspectives of the effectiveness of academic accommodations and behavioral supports for students diagnosed with/suspected of having PANDAS/PANS.
- Knowledge about how parents in different settings perceive the educational experiences of students diagnosed with/suspected of having PANDAS/PANS will contribute to improving educational outcomes for future students.
- New knowledge about strategies and supports implemented to increase student success or alternative strategies that are not successful will contribute to the perceived reality of the experience of educating students diagnosed with/suspected of having PANDAS/PANS.
- Advancing the knowledge base for how parents perceive the educational experiences of students diagnosed with/suspected of having PANDAS/PANS will contribute to improving instruction for children with PANDAS/PANS.
Questions:
Please reach out to Mary Crombez, Madonna University Doctoral Candidate via PANDASPANSresearch@gmail.com
Parent & Teacher Perspectives on Effectiveness of Academic Accommodations & Behavioral Supports for Students with PANS PANDAS
Please read more about the study’s goals and who can participate. In addition, ASPIRE President Gabriella True and Mary Crombez discuss the study in more detail and the impetus for the dissertation.
Mary is currently seeking enrollment for the study. She is studying parent and teacher perspectives of the effectiveness of academic accommodations and behavior supports for students diagnosed with/suspected of having PANDAS/PANS. This study is being completed as a part of Mary Crombez’s doctoral studies; the results of this study will become the body of her dissertation.
Study goals
- understand parents’ and teachers’ perspectives of the effectiveness of academic
accommodations and behavioral supports for students diagnosed with/suspected of having
PANDAS/PANS in the education setting - understand how parents and teachers in different settings perceive the educational experiences of students diagnosed with/suspected of having PANDAS/PANS which will
contribute to improving educational outcomes for future students - understand which strategies and supports teachers implement to increase student success or, alternatively, which strategies may not be successful for students diagnosed with/suspected of having PANDAS/PANS
- improve instruction for children with PANDAS/PANS
Who can participate?
- parent and teacher pairs for students diagnosed with/suspected of having PANDAS/PANS
- teachers may be current or former classroom providers
- child/student is/was in Kindergarten through 8th grade for the time period being discussed
- parents are responsible for providing their consent to participate, their consent for their child’s teacher to share information with the researcher, and obtaining their school district’s consent for the teacher to participate and the teacher’s consent
If you are interested in helping, please reply to:
Please let me know if you have any questions. Thank you for helping to improve the lives of students diagnosed with/suspected of having PANDAS/PANS.
With gratitude for your support,
Mary Crombez
Madonna University Doctoral Candidate
Interview with Mary Crombez
Gabriella True: How many people are you hoping to interview?
Mary Crombez: Using prior quantitative studies as a guide, the goal is to interview a minimum of twelve subject pairs (parent and teacher). However, procedural conditions for the quantitative analysis for the content of the interviews of this study stipulate that the aggregate data (all information combined together) reaches a point at which no new knowledge is generated during the interviews. Therefore, a maximum number of subjects is unknown at this time due to the fact that no published data of this kind exists. One PANDAS/PANS parent perception data study reported data from six interviews, while another used perception data from 60 families.
Gabriella True: How long will enrollee participation take?
Mary Crombez:
For parents, the entire process will take approximately 3 non-consecutive hours. Each parent enrollee will have three separate tasks requiring a different amount of time to complete. The first task for parents revolves around getting written consent and may take up to one hour. This hour would be divided as follows: after spending 15 minutes reading the consent and information form, the parent would complete their own consent to participate and provide written consent for their child’s current or former teacher to share information about their child with me. Then the parent would spend the remaining 45 minutes obtaining the school district’s consent for the teacher to participate and the teacher’s consent. The second hour of participation for parents would be spent filling out the online surveys. The third hour of participation for parents would be participating in the interview (by phone or virtual meeting, whichever the parent prefers).
For district personnel, the entire process will take 30 minutes (15 minutes of reading the consent/information document and 15 minutes of discussion with central office personnel/school board members as to whether or not they will permit staff to participate). For teaching staff, the entire process will take 2 hours and 15 minutes. Teachers need 15 minutes to read and sign the consent/information document. Teachers need one hour to complete the online surveys. Finally, teachers will need one hour to participate in the interview (by phone or virtual meeting, whichever the teacher prefers).
Gabriella True: What is involved in participation?
Mary Crombez: Subjects will participate in three ways: 1) providing consent, 2) completing online surveys, and 3) participating in an interview. Will it be an interview? Yes, one part of participation includes an interview in real-time, either via a phone call or through a virtual meeting (each participant may choose which method they prefer). The interviews will be recorded. Will you be asking for data from the teachers? Yes, teachers will share their perceptions based on their experience in the classroom with their students diagnosed with or suspected of having PANDAS/PANS. The student does NOT need to have an IEP or a 504 to have their parent and teacher participate. The study will NOT collect quantitative data from an Individualized Education Program; only the teacher and parent’s perceptions of the effectiveness of accommodations and supports that may or may not have been outlined in such a plan will be collected. The study will NOT collect quantitative Behavior Intervention Plan or Success Plan data; only the teacher and parent’s perceptions of the effectiveness of accommodations and supports that may or may not have been outlined in such a plan will be collected.
Gabriella True: What is your background and reason for your interest in PANS PANDAS?
Mary Crombez: One of my children has PANDAS. Over the years, I have sought out ways that I can advocate for children enduring this condition. Having lived this experience personally, I have dedicated myself to advocating awareness, offering support, and improving outcomes in any way I possibly can. In my community, I have sat with countless mothers and fathers, and children as they navigate through the tumultuous, life-changing effects of PANDAS/PANS.
I am grateful to have co-authored an earlier study examining parental perceptions of PANDAS.
Implications for Advanced Practice Nurses When Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections (PANDAS) Is Suspected: A Qualitative Study
I have advocated for children’s health at the Michigan Chapter of the American Academy of Pediatrics. I have supported families in their homes, during PANDAS awareness day events, and at local support meetings. I have provided professional development focused on PANDAS/PANS to educators throughout Michigan. Time and again, I have heard stories of the struggles families face at school. Schools implement various strategies to help their students succeed. However, when it comes to PANDAS/PANS, no research examining the effectiveness of these strategies has been conducted. I am hopeful that my research can shed some light on parents’ and teachers’ perceptions of the effectiveness of the various strategies schools implement when a child presents with the symptoms of PANDAS/PANS. Determining effective ways to support children suffering from PANDAS/PANS in the school setting is imperative. Understanding the perceived effectiveness of accommodations and supports will determine which accommodations and supports increase student success or, alternately, should be avoided. The aim of the study is to ultimately improve instruction and educational outcomes for future students.
Gabriella True: Why did you exclude high school students?
Mary Crombez: The study does allow participants to be current or former teachers; therefore, former K-8th grade teachers may participate for students who are currently in high school but who were diagnosed with/suspected of having PANDAS/PANS during their K-8 school years. On average, the age of onset of PANDAS/PANS is reported to be between 4 and 7 years of age (preschool through 2nd grade). Examining data for kindergarten through eighth-grade students should allow the study to capture a substantial data set. Researchers limit their subject pool to reduce the variables. Limiting the subject pool to students in kindergarten through eighth grade allows the study to focus on educational experiences that are more similar overall. For instance, in many parts of the country, students in this age range remain with one teacher throughout the school day, whereas in high school, students transition to another teacher over 6 periods (on average) throughout the school day. The core subject matter in the K-8 setting is more homogenous. The strategies (accommodations and supports) for students in this grade range are more similar than for students in high school (where accommodations and supports may vary more widely). A follow-up study could be conducted for students in high school should interest arise.
Gabriella True
