The Lived Experiences of Parents of Children with Polyposis Diagnoses: Advocating Healing Relationships

While much research has been conducted on the experiences of individuals with inflammatory bowel diseases, there remains a dearth of research conducted on those affected by polyposis conditions. As a result, little is known about the lived experiences of those with polyposis conditions, especially in the cases of parents of pediatric patients with these conditions. This study qualitatively explored the lived experiences of parents of children with polyposis conditions, specifically Juvenile Polyposis Syndrome and Peutz-Jeghers Syndrome. Hermeneutic phenomenology was used to explore the lived experiences of seven parents of children diagnosed with polyposis conditions through semi-structured interviews. Collected data was analysed using Lindseth and Norberg (2004)’s Phenomenological Hermeneutical Method for Researching Lived Experience. In total, four major themes comprising of twelve sub-themes were revealed. Parents discussed feeling grateful for the use of family-centred approaches by their children’s physicians as well as access to medical care for their children, which encouraged them to demonstrate a proactive approach towards their children’s health maintenance. Furthermore, they explained that while seeking information concerning their children’s conditions was anxiety-inducing, discussing their experiences with others with situations similar to theirs was validating and informative. The participants described the importance of advocating for their children within and outside of the medical system, and the responsibility they feel in teaching their children to undertake the advocating process for themselves. Lastly, the parents reflected on the impact their children’s diagnoses have had on their relationships with themselves, their families and their support networks. Overall, the findings from this study are in-line with findings RUNNING HEAD: Polyposis diagnoses: Experiences of parents iii from prior research, except in the case of the ‘Teaching the children to speak for themselves’ theme which proves to be a novel contribution to the literature. The shared key aspects of the phenomenon indicate that focus should be placed on the utilization of family-centred care by physicians, the development of support groups for parents, and on educating physicians on how to best facilitate parents as they model advocating behaviours to pediatric patients. This study provides insight into the lived experiences of parents of children with polyposis syndromes, informing the medical community of how the needs of this group can be better met. Furthermore, the qualitative nature of this research will provide the polyposis, chronic illness and rare illness literatures with information it has been lacking, using a valuable methodological perspective. RUNNING HEAD: Polyposis diagnoses: Experiences of parents iv Acknowledgements As I reflect on the past few years of the development of this thesis, I am filled with immeasurable gratitude and a little bit of shock that this chapter of my journey is finally complete. There are many people without whom this project would not have been successful. I would like to express my gratitude to my research supervisor Dr. André Samson for his supervision and encouragement throughout this long process. Thank you as well to my thesis committee, Dr. Janice Barkey, Dr. Eva Tomiak and Dr. Katherine Moreau, whose optimism and belief in the research process proved to be contagious, even in the most wanting of times. Thank you to my friends for their support during the innumerable rant sessions, coffee dates, long distance phone calls and celebrations of even the tiniest of successes –I am so fortunate to be able to grow alongside of you. Thank you to Tim, who brought humour to this process. Laughing with you continues to be my happy place. Thank you to my parents and sister for simply being the best. Mom, Dad, and Kristen, thank you for helping me to find within myself a strength I didn’t know I had. I am forever grateful. And last but not certainly not least, thank you to the men and women who so willingly and bravely shared their stories. This project would not have been possible without you. RUNNING HEAD: Polyposis diagnoses: Experiences of parents v TABLE OF CONTENTS Abstract ii Acknowledgements iv Table of