Stigma experiences of patients living with gastroparesis

Abstract

Introduction Stigmatization toward chronic digestive diseases is well documented. Patients perceive others hold negative stereotypes toward their disease and may internalize these beliefs as true. Because of this, stigmatization is associated with poor outcomes across disease‐related and psychosocial domains. No study to date evaluates stigmatization toward patients living with gastroparesis (GP), a poorly understood disease affecting gastric motility. We aimed to gain deep understanding of stigma in patients living with gastroparesis. Methods Patients with GP were recruited from two university‐based gastroenterology practices as well as patient advocacy support groups. Participants underwent a semi‐structured qualitative interview about their experiences with stigma related to their GP diagnosis, which were audio‐recorded and transcribed to text for analysis using a grounded theory approach. Major themes with representative quotations were documented. Results Twenty‐three patients participated. The majority were White, female, with idiopathic GP under the care of a gastroenterologist. All patients reported stigma related to GP. Seven major themes were found: stigma from healthcare providers, stigma within interpersonal relationships, GP as an invisible disease, blame, unsolicited suggestions on how to manage disease, disclosure, and stigma resistance. Conclusions This is the first study to describe stigma experiences in patients with GP. The results suggest patients experience considerable stigmatization toward their condition from multiple sources. Patients also demonstrated resistance to negative beliefs, which can serve as a protective factor for the negative effects of disease stigma. Clinicians should be aware of stigma in GP patients, including their own potential internal biases and behaviors.

“It’s a helluva journey”: A qualitative study of patient and clinician experiences of nausea and vomiting syndromes and functional dyspepsia

“…Previous research corroborates the challenging lived experiences of patients with FGIDs, including; poor health related quality of life, stigma from healthcare providers and social networks, feelings of loss and sadness, and psychological distress 21,[27][28][29] . As such, efforts to better understand the clinical care pathway for patients with NVS and FD and how the clinical challenges impact their lived experiences is warranted 30 .…”

Medical students' knowledge and perception of irritable bowel syndrome in comparison to inflammatory bowel disease

“…It is worth noting that while these interventions can help promote more positive attitudes toward IBS, they may also be generalizable to other stigmatized conditions that may be difficult to diagnose and manage (e.g., chronic pain and gastroparesis) 18,28 . Ultimately, improved knowledge, attitudes, and understanding of the lived experience with these conditions may lead to better outcomes and a more humanistic approach to patient care in IBS.…”

“…26 Although this study suggests that there is deeply rooted bias against patients with IBS, there is evidence that increased expo- It is worth noting that while these interventions can help promote more positive attitudes toward IBS, they may also be generalizable to other stigmatized conditions that may be difficult to diagnose and manage (e.g., chronic pain and gastroparesis). 18,28 Ultimately, improved knowledge, attitudes, and understanding of the lived experience with these conditions may lead to better outcomes and a more humanistic approach to patient care in IBS. All authors agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.…”

Importance of Distinguishing Avoidant/Restrictive Food Intake Disorder From Other Eating Disorders in Patients With Disorders of Gut-brain Interaction

“…When considering eating disorder differential diagnoses in patients being seen for a DGBI, it is important to distinguish ARFID from other weight and/or body image-motivated eating disorders, as treatments for these conditions vary [3][4][5] and effectively engaging patients in seeking treatment may be hindered by incorrectly describing their restrictive eating patterns as the more stereotypical eating disorders of anorexia nervosa or BN, given varying attitudes and stigma associated with the different conditions 6 and the stigma of psychiatric blame for DGBI conditions more generally. 7,8 Nausea and vomiting disorders, in particular, may be easily confused with BN, which is characterized by episodes of binge eating and inappropriate compensatory behaviors, including vomiting. However, the syndromes defined by Rome IV Criteria are distinguished from BN in that self-induced vomiting is excluded.…”

“…When considering eating disorder differential diagnoses in patients being seen for a DGBI, it is important to distinguish ARFID from other weight and/or body image–motivated eating disorders, as treatments for these conditions vary 3–5 and effectively engaging patients in seeking treatment may be hindered by incorrectly describing their restrictive eating patterns as the more stereotypical eating disorders of anorexia nervosa or BN, given varying attitudes and stigma associated with the different conditions 6 and the stigma of psychiatric blame for DGBI conditions more generally 7,8 …”