Author: Eunice Gribbin
Gribbin, Eunice, 2023 Invisible but exposed. An innovative research lens on congenital bowel disorders, Flinders University, College of Humanities, Arts and Social Sciences
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Hirschsprung’s disease (HSCR) and/or anorectal malformations (ARM) are two of the most common causes of neonatal bowel obstruction. While improvements in surgical approaches have significantly reduced the mortality rate for these babies over the past fifty years, surgery does not always result in the desired outcome of faecal continence for the child. Since the diagnosis of HSCR/ARM is only possible after the baby is born, the news usually comes as a shock to parents who had no indication their baby had a congenital abnormality, often requiring major surgery within days of their birth. Parents feel isolated, and this is exacerbated if the child continues to have varying levels of faecal incontinence, a state which is often interpreted through the lens of poor parenting or childhood anxiety in schools and among other parents. This doctoral research focuses on the experiences of those families who have a child born with HSCR/ARM-related faecal incontinence, from diagnosis as a neonate to their experiences at school, and some older adults who have contacted the support group I co-founded, the Bowel Group for Kids Incorporated. The thesis is configured through a multi-lens approach to capture critical stakeholders through a child’s life, including paediatric surgeons, parents, other children, teachers, and allied health professions.
My significant, original contribution to knowledge is to demonstrate that the medical model of Hirschsprung’s disease or anorectal malformation is not sufficient to enable not only the treatment, but the life of these citizens. I draw on my personal experiences as a nurse who cares for these families; as a parent of a child born with Hirschsprung’s disease, an educator of future clinicians and as cofounder of the first Australian parents’ peer-to-peer support group for children born with a congenital bowel disorder, founded in 1994. Surveys were distributed to paediatric surgeons, organisers of support groups globally and parents of affected children. Interviews were conducted with parents and teachers, and a review of school policies was conducted to understand how these children were accepted and supported within the school environment. To consolidate this research, it was important to include the stories from the people who have the lived experience caring for these children once they are discharged from hospital following corrective surgery. My analysis offers a revaluation and reconfiguration of Goffman’s theory of stigma (1963) as relational, demonstrating how faecal incontinence is frequently positioned by others as a ‘spoilage’ of the child’s identity. I highlight how parents struggle to become ‘wise,’ in Goffman’s sense: normal individuals who are accepted by the stigmatised as people who do not, and cannot, shame them. Through peer-to-peer support groups, and through active advocacy for their children, parents carve out the space of being ‘wise’ from their children’s earliest years, anticipating the stigma that will befall their children. My significant original contribution to knowledge in this doctoral thesis is the ability to draw on the position of a nurse caring for children born with congenital abnormalities, as a mother of a child born with significant disabilities, an educator of future nurses and doctors and as the co-founder of a peer to peer support group to support those affected by congenital bowel disorders. This thesis demonstrates the need for support in all domains of children’s lives who have a taboo condition like faecal incontinence, resting on rigorous and compassionate multidisciplinary clinical care, the value of peer-to-peer support for parents and families from diagnosis and throughout their child’s life as needed, and enlightened, non-judgemental educational policy.
Keywords: Congenital Bowel Disorders, Hirschsprun'gs disease, imperforate anus, anorectal malformaiton, stigma.
Subject: Nursing thesis
Thesis type: Doctor of Philosophy
Completed: 2023
School: College of Humanities, Arts and Social Sciences
Supervisor: Professor Tara Brabazon