Lived experiences of young 'ostomates': negotiations with space, stigma, and identity
Lead Research Organisation:
University of Manchester
Department Name: Environment, Education and Development
Abstract
The overall aim of this studentship is to explore the multiple lived experiences of young ostomates in the UK. Through a relational geographical lens (Massey 2005), the proposed PhD investigates young ostomates' personal negotiations with space, stigma and identity, looking at how their condition impacts their everyday encounters with family, friends, intimates and strangers. To investigate these issues, the project is in partnership with GetYourBellyOut, an award winning global campaign and community interest company (CIC) supporting people affected by IBD.
The term 'ostomate' is often used to describe a person who has undergone surgery which resulted in the formation of an ostomy or stoma. Approximately 102,000 people in the UK live with a stoma, and around 21,000 new stomas are formed every year. One of the main reasons people undergo stoma surgery is due to Inflammatory Bowel Disease (IBD), and young people under 16 years old make up a quarter of new IBD diagnoses.
Research questions:
1. How does living with a stoma impact young people's everyday relationships and encounters?
2. How do young people living with an ostomy experience stigmatisation, and what role does this play in mental health, wellbeing and self-esteem?
3. In what contexts are the terms 'hidden' and 'invisible' used to describe living with a stoma?
4. How do young ostomates negotiate spaces, including personal, virtual, social, public, and productive spaces?
Methodology:
a) Thirty biographical interviews and diaries with young ostomates aged 14-25, based primarily in the North West of England. The participant led interview will enable young people to talk about their experiences of living with a stoma in a comfortable and private setting. The interviews are designed to collect personal experiences of stigma, worry, and identity making, uncovering impacts on young ostomates' mental health. Participants will be recruited through a combination of purposive and snowball sampling, facilitated through GetYourBellyOut and their networks. Biographical interviewees will be given the opportunity to complete a two-week personal diary in order to explore the more mundane elements of living with an ostomy in their own words and to confidentially share personal details about everyday experiences.
b) Discourse analysis of the multiple key online spaces, (e.g. YouTube, Facebook, Instagram and chat forums). This will include exploring well-known websites, hashtags such as #getyourbellyout and social media influencers, as well as further examples raised in interviews, diaries and online discussions. The online spaces reveal stories and experiences of young ostomates through various mediums such as videos, artwork, photographs, products and discussions.
c) Five anonymous online focus group discussions, two advertised and hosted by the partner's online platforms, three on other virtual spaces (For example via chat forums, and e-messenger threads). This method offers the opportunity for young people to engage who want to retain anonymity. Summaries of salient points raised across the anonymous focus group discussions will be made available on GetYourBellyOut's website.
The research will produce two toolkits for young people affected, friends, families, and organisations. The toolkits will incorporate information provided by participants in the interview and diary methods, outlining what they wish they knew, and what they wish other people knew about living with a stoma.
The term 'ostomate' is often used to describe a person who has undergone surgery which resulted in the formation of an ostomy or stoma. Approximately 102,000 people in the UK live with a stoma, and around 21,000 new stomas are formed every year. One of the main reasons people undergo stoma surgery is due to Inflammatory Bowel Disease (IBD), and young people under 16 years old make up a quarter of new IBD diagnoses.
Research questions:
1. How does living with a stoma impact young people's everyday relationships and encounters?
2. How do young people living with an ostomy experience stigmatisation, and what role does this play in mental health, wellbeing and self-esteem?
3. In what contexts are the terms 'hidden' and 'invisible' used to describe living with a stoma?
4. How do young ostomates negotiate spaces, including personal, virtual, social, public, and productive spaces?
Methodology:
a) Thirty biographical interviews and diaries with young ostomates aged 14-25, based primarily in the North West of England. The participant led interview will enable young people to talk about their experiences of living with a stoma in a comfortable and private setting. The interviews are designed to collect personal experiences of stigma, worry, and identity making, uncovering impacts on young ostomates' mental health. Participants will be recruited through a combination of purposive and snowball sampling, facilitated through GetYourBellyOut and their networks. Biographical interviewees will be given the opportunity to complete a two-week personal diary in order to explore the more mundane elements of living with an ostomy in their own words and to confidentially share personal details about everyday experiences.
b) Discourse analysis of the multiple key online spaces, (e.g. YouTube, Facebook, Instagram and chat forums). This will include exploring well-known websites, hashtags such as #getyourbellyout and social media influencers, as well as further examples raised in interviews, diaries and online discussions. The online spaces reveal stories and experiences of young ostomates through various mediums such as videos, artwork, photographs, products and discussions.
c) Five anonymous online focus group discussions, two advertised and hosted by the partner's online platforms, three on other virtual spaces (For example via chat forums, and e-messenger threads). This method offers the opportunity for young people to engage who want to retain anonymity. Summaries of salient points raised across the anonymous focus group discussions will be made available on GetYourBellyOut's website.
The research will produce two toolkits for young people affected, friends, families, and organisations. The toolkits will incorporate information provided by participants in the interview and diary methods, outlining what they wish they knew, and what they wish other people knew about living with a stoma.
Studentship Projects
| Project Reference | Relationship | Related To | Start | End | Student Name |
|---|---|---|---|---|---|
| ES/P000665/1 | 01/10/2017 | 30/09/2027 | |||
| 2495594 | Studentship | ES/P000665/1 | 01/10/2020 | 14/03/2024 | Poppy Budworth |