Abstract
Abstract
Introduction: The aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self-management of stoma-related distress. The current identification and management of distress in young people with a stoma is often sub-optimal in clinical settings and there is a need for improved support resources.
Methods: Two consensus group meetings were carried out via online video conferencing, using Nominal Group Technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self-management intervention.
Results: Nineteen young people, aged 19-33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty-nine topics were generated by participants, seven of which reached consensus of >80%, that is, a mean of >5.6 on a 7-point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/ addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma ‘hacks’, e.g. useful everyday tips regarding clothing, making bag changes easier etc.; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey.
Conclusions: Findings extend previous research on young people’s experiences of stoma surgery, by generating consensus on young peoples’ priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self-management resource for young people with an IBD stoma and have relevance for the clinical management of stoma-related distress in this population.
Introduction: The aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self-management of stoma-related distress. The current identification and management of distress in young people with a stoma is often sub-optimal in clinical settings and there is a need for improved support resources.
Methods: Two consensus group meetings were carried out via online video conferencing, using Nominal Group Technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self-management intervention.
Results: Nineteen young people, aged 19-33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty-nine topics were generated by participants, seven of which reached consensus of >80%, that is, a mean of >5.6 on a 7-point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/ addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma ‘hacks’, e.g. useful everyday tips regarding clothing, making bag changes easier etc.; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey.
Conclusions: Findings extend previous research on young people’s experiences of stoma surgery, by generating consensus on young peoples’ priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self-management resource for young people with an IBD stoma and have relevance for the clinical management of stoma-related distress in this population.
| Original language | English |
|---|---|
| Journal | Health Expectations |
| Volume | 27 |
| Issue number | 2 |
| Early online date | 10 Mar 2024 |
| DOIs | |
| Publication status | Published - Apr 2024 |
Keywords
- nominal group technique
- young people
- inflammatory bowel disease
- distress
- stoma surgery
- self‐management