Shit Happens: a parent led initiative using social media in Hirschsprung’s Disease (HD) research

Last modified by Ann Watkins on 2016/04/01 20:52

Synopsis

Hirschsprung’s Disease (HD) is a rare condition affecting the gastrointestinal tract, resulting in the difficulty or the inability to pass stool. Despite advances in diagnostics and corrective surgery, children and families affected by the disease continue to experience multiple ongoing challenges. Social media can unite families affected by rare diseases that are otherwise faced with the barrier of geography. Thus, a parent of a child with HD developed a social media-based campaign, called “Shit Happens” to unite families affected by this condition. “For a child and family the idea of ‘Shit happening’ tends to bring feelings of joy and relief. [When dealing with a rare disease] it’s either laugh or cry; you might as well laugh!” – says a parent of child with HD about the campaign name. 

This presentation will demonstrate how a parent-initiated campaign turned into a research partnership aimed at identifying and addressing the most important information needs related to caring for a child with HD. We invite families, health care professionals, and researchers affected by HD to join us!

Resources

REACH - Research, Education, and Awareness for Children with Hirschsprung's Disease

Presentation Slides

Presenters

kristy.jpgKristy Wittmeier PT, MSc, PhD

Dr. Wittmeier is one of the lead researchers for this project. Kristy is a physiotherapist, researcher and the Director of Knowledge Translation at the George and Fay Yee Centre for Healthcare Innovation. She is passionate about using research to improve patient outcomes, and is excited to work with caregivers and clinicians on this important project to address knowledge needs related to Hirschsprung’s Disease.

Richard-Keijzer.jpegRichard Keijzer MD, PhD, MSc

Dr.Keijzer is a Pediatric General Surgeon at the Winnipeg Children’s Hospital who is experienced in the care of families affected by HD. Also a Children’s Hospital Research Institute of Manitoba researcher, he has travelled afar from Rotterdam, The Netherlands to further explore his research of babies born with congenital anomalies from lung development (congenital diaphragmatic hernia and pulmonary hypoplasia). He provides leadership in this project as a Co-Investigator, and is inspired by the collaboration of caregiver, researcher and clinician. This unique interaction within the sphere of social media use in health care has peeked his interest. 

Liz-221x300.jpgLiz Crawford

Liz is the mother of a child with HD, as well as the inspiration and creator behind the campaign “Shit Happens.”  Liz is a Co-Investigator of this project, and an active participant in this research with her two-dimensional background as a caregiver and as an expert of advocacy. Swish Productions Ltd. is a public relations company that is owned by Liz, and has been involved with the monitoring of the campaign sites, the campaign strategy and public relations relating to Shit Happens campaign since inception.  Her inspiration is to raise awareness of HD, and to promote families in achieving the answers they need for dealing with the day-to-day questions that come with being a caregiver of a child with HD.

cindyholland.jpgCindy Holland, NP

Cindy Holland, a Co-Investigator of this project, is a Nurse Practitioner for Pediatric Surgery service at the Winnipeg Children’s Hospital.  She graduated from the University of Manitoba in 2005 with a Masters of Nursing in the NP program.  She has been a Pediatric Nurse in various roles since 1996.  Cindy assists the surgical team in managing children admitted to the hospital with their surgical issues.  She also supports the children and families in the community with issues and questions they have at home, liaising with the Surgeon.  She educates nurses and families on managing HD and assists in developing written material and system processes. She is an invaluable resource to critically appraise the evidence within this project and develop any guidelines for managing issues related to HD.

kendallhobbs-murison.jpgKendall Hobbs-Murison, RN BN

Kendall is the research technician for this project. She has ten years of clinical experience as a Pediatric Surgical & Burn Nurse at the Winnipeg Children’s Hospital, inclusive of providing postoperative care and management of complications for children with HD. She has a special interest in improving the quality of care for the pediatric population. Inspired by this project because it is parent initiated, she aims to build upon her experience in continuous quality improvement to achieve the goals of this team.

melanie.jpgDr. Melanie Morris, MD, FRSCS

Dr.Morris is a Pediatric General Surgeon that has recently joined the Department of Surgery and Urology in Winnipeg.  She is Co-Investigator in this project and provides her expert opinion into the direction of this project. Dr. Morris did her pediatric surgery training at Ste Justine Hospital in Montreal in addition to a Pediatric Urology fellowship. She has interests in furthering the understanding of Hirschsprung’s Disease as well as the impact on parents. Her other areas of interest include humanitarian efforts, she travels to Kenya for outreach projects in pediatric surgery and pediatric urology.