“Treated as second class citizens” - the lived experience of obesity-related stigma: an IMI2 SOPHIA study

ABSTRACT

Purpose

Obesity-related stigma impacts on and shapes the physical and psychosocial wellbeing of individuals living with obesity. Often absent from the literature in the field is the voice(s) of those living with obesity capturing the nuances of the lived experiences of obesity-related stigma.

Methods

This study adopted a qualitative approach encompassing individual (n = 15) and photovoice method (n = 12), with a purposeful sample of patients accessing treatment for obesity within the healthcare setting during 2021. Analysis was undertaken using thematic analysis.

Results

Key themes developed from the analysis related to experiencing obesity-related stigma as exposure to external judgement, societal exclusion and felt environmental stigmatization. Exposure to external judgement was described as judgemental comments resulting in hypervigilance to societal judgement. Participants reported how being overlooked and ignored by others had various negative effects and compounded obesity-related stigma through societal exclusion. Public spaces lacking suitable equipment further made obesity-related stigma visible through felt environmental stigmatization when pursuing hobbies and in everyday life.

Conclusions

Obesity-related stigma had a profoundly negative impact on participants in this study, particularly in shaping social interaction, limiting life experiences and impacting psychosocial wellbeing.

KEYWORDS:

• Obesity
• stigma
• photovoice
• lived experience
• qualitative interviews

Acknowledgments

This manuscript is part of a the Stratification of Obesity Phenotypes to Optimize Future Obesity Therapy (SOPHIA) project (www.imisophia.eu). SOPHIA has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No. 875534. This Joint Undertaking support from the European Union’s Horizon 2020 research and innovation program and EFPIA and T1D Exchange, JDRF, and Obesity Action Coalition. The communication reflects the author’s view and neither the IMI nor the European Union, EFPIA, or any Associated Partners are responsible for any use that may be made of the information contained therein

Disclosure statement

Farrell and McGillicuddy have no conflicts of interest to disclose. Hollmann has received Transfer of Value from Novo Nordisk in 2022 for registration, travel and accommodation to the Zoom Forward 22 congress. Nadglowski is President/CEO of Obesity Action Coalition which has received funding from NovoNordisk, Eli Lily, WeightWatchers, Pfizer, Currax, Boehringer Ingelheim, Ethicon, Medtronic, Fujifilm, Bariatric Advantage, Intuitive and Rhythm Pharma. ClR reports grants from the Irish Research Council, Science Foundation Ireland, Anabio, and the Health Research Board. He serves on advisory boards of Novo Nordisk, Herbalife, GI Dynamics, Eli Lilly, Johnson & Johnson, Glia, and Boehringer Ingelheim. ClR is a member of the Irish Society for Nutrition and Metabolism outside the area of work commented on here. He was the chief medical officer and director of the Medical Device Division of Keyron in 2011. Both of these are unremunerated positions. ClR was a previous investor in Keyron, which develops endoscopically implantable medical devices intended to mimic the surgical procedures of sleeve gastrectomy and gastric bypass. The product has only been tested in rodents and none of Keyron’s products are currently licensed. They do not have any contracts with other companies to put their products into clinical practice. No patients have been included in any of Keyron’s studies and they are not listed on the stock market. ClR was gifted stock holdings in September 2021 and divested all stock holdings in Keyron in September, 2021. He continues to provide scientific advice to Keyron for no remuneration.

Notes

1. This project aims “to enable healthcare professionals to reliably predict the complications of obesity and who will respond to treatment” (IMI2 SOPHIA, n.d.., para 1). The project employs a consortium of 31 partners within Europe and the United States of America.

2. This study was undertaken prior to the release of Ozempic®. Participants in the pharmacotherapy subgroup received Liraglutide at some point prior to the study.

3. This is a direct quote from a participant, thus the term has not been changed.

4. The following abbreviations were used to describe participants’ assigned subgroups: LT-Lifestyletherapy, PT-Pharmacotherapy, BS-Bariatric Surgery, T1D-Type 1 Diabetes, T2D-Type 2 Diabetes.

5. This is a direct quote from a participant, thus the term has not been changed.

6. This is a direct quote from a participant, thus the term has not been changed.

7. This is a direct quote from a participant, thus the term has not been changed.

8. This is a direct quote from a participant, thus the term has not been changed.

9. This is a direct quote from a participant, thus the term has not been changed.

10. This is a direct quote from a participant, thus the term has not been changed.

Additional information

Funding

This manuscript is part of a the Stratification of Obesity Phenotypes to Optimize Future Obesity Therapy (SOPHIA) project (www.imisophia.eu). This work was supported by the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No. 875534. This Joint Undertaking support from the European Union’s Horizon 2020 research and innovation program and EFPIA and T1D Exchange, JDRF, and Obesity Action Coalition.

Notes on contributors

Eva Hollmann

Eva Hollmann is a researcher at the School of Education at University College Dublin. The research she conducted during her Research Master’s degree has focused primarily on obesity-related stigma. As a qualified nurse she is interested in lived experiences of people living with obesity.

Emma Farrell

Dr Emma Farrell is a Postdoctoral Research Fellow in the School of Education UCD. With expertise in qualitative research approaches, Emma’s research has focused on understanding the lived experience of people with mental health difficulties, school aged children, their parents, grandparents, teachers and principals, and people living with obesity. In addition to these areas of research, Emma holds a number of board and advisory roles. These include advisory positions with the Social Innovation Fund Ireland and The College of Psychiatrists of Ireland as well as board membership of Gaisce, the President’s Award, and previously Jigsaw, The National Centre for Youth Mental Health - of which Emma was a founding member. Emma was appointed to the Government Taskforce for Youth Mental Health in 2016 and is particularly interested in human experiences and stories as form of evidence for policy development.

Carel Le Roux

Professor Carel le Roux graduated from medical school in Pretoria South Africa, completed his specialist training in metabolic medicine at St Bartholomew’s Hospitals and the Hammersmith Hospitals. He obtained his PhD from Imperial College London where he later took up a faculty position. He moved to University College Dublin for the Chair in Experimental Pathology and he is now a Director of the Metabolic Medicine Group. He also holds the position of Professor of Metabolic Medicine at Ulster University. He currently coordinates an Innovative Medicine Initiative project on obesity. He previously received a President of Ireland Young Researcher Award, Irish Research Council Laureate Award, Clinician Scientist Award from the National Institute Health Research in the UK, and a Wellcome Trust Clinical Research Fellowship for his work on how the gut talks to the brain.

Joe Nadglowski

Joe Nadglowski is President & CEO of the Obesity Action Coalition (OAC) – a nonprofit organization formed in 2005 dedicated to elevating and empowering individuals affected by obesity through education, advocacy and support. A frequent speaker and author, Mr. Nadglowski is especially passionate about access to obesity treatments, tackling weight bias and sharing his own experiences with obesity. He has more than 25 years of experience working in patient advocacy, public policy, research and education and is a graduate of the University of Florida.

Deirdre McGillicuddy

Dr Deirdre McGillicuddy is Assistant Professor in UCD School of Education and leads the qualitative research strand of the Innovative Medicine Initiative 2 SOPHIA study capturing individuals’ experiences of living with obesity. She is particularly interested in equality, social justice and the psychosocial dimension of identity and wellbeing.