Article Summary by Andrea LaMarre, Kathryn McGuigan and Melinda Lewthwaite
What does care mean, in the context of treatment for avoidant restrictive food intake disorder (ARFID)? In this paper, we explored that question, engaging with stories shared with us by 14 caregivers of individuals with ARFID. We were specifically interested in how participants described their “pathways to care”—how they navigated the healthcare system, where they began their journeys, what they tried, and where they got to. We created poems from participants’ stories, which helped us to dig deeper into the emotions, relationships, and material things that arose during these pathways to care. Through this analysis, one of our key findings was that while participants were seeking care, they often found themselves with limited treatment options and various dead-ends. In light of the deficits of care they encountered, participants often found themselves intervening for their loved ones, working to enact care. Instead of feeling cared for, participants often found themselves feeling shamed and/or blamed. Despite largely encountering lacking care, participants did describe moments or glimmers of hope. These moments of hope offer insight into the kinds of relationships that a truly caring system of care might offer for people with ARFID and their families.
Read the full article on the Medical Humanities journal website.
Dr Andrea LaMarre is a researcher currently living in Kjipuktuk (Halifax, Nova Scotia). At the time of writing this article, she was a lecturer in critical health psychology at Massey University in Aotearoa New Zealand. She has lived experience of an eating disorder and has spent the past decade researching recovery and ways to improve systems of care for eating disorders. In her research, she has engaged with qualitative and arts-based methodologies. She takes an interdisciplinary lens on her research, primarily drawing on psychology, sociology, human development, and philosophy. Her research interests primarily centre around eating disorders, but she has also conducted research on weight stigma, reproductive healthcare, evaluation capacity building, and disability and difference.
Dr Kathryn McGuigan is a senior lecturer in Health and Social psychology at Massey University, Auckland campus, New Zealand. Her research interests revolve broadly in the area of critical health psychology using qualitative methodologies. More specifically Kathryn is interested in exploring the intersections of health and wellbeing within disability, neurodivergence, eating and food practices, and gender. Kathryn is a passionate ally for social justice for disability and neurodiversity with recent research focusing on neurodivergent tertiary students experiences. Kathryn is also passionate about innovative qualitative methods including arts based research.
Melinda Lewthwaite is a PhD candidate at Massey University, New Zealand. Her PhD research explores experiences of day-to-day dietary practices enacted in response to irritable bowel syndrome symptom avoidance and management. Her research interests include ‘orthorexia’, dietary practices associated with self-management of diet related chronic health conditions and disordered eating/eating disorders. Melinda is interested in qualitative research and the use of new materialist theoretical perspectives to explore understandings of food and body practices.