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Daily Living and Healthcare Experiences of Individuals Living with Desmoid-Type Fibromatosis: A Qualitative Investigation
Megan Bowes 
,
Catherine Coyle,
Olga Husson ,
Kim Dienes ,
Rachael Powell
,
Catherine Coyle,
Olga Husson ,
Kim Dienes ,
Rachael Powell
European Journal of Cancer Care, Volume: 2023, Pages: 1 - 8
Swansea University Author:
Kim Dienes
-
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© 2023 Megan Bowes et al. This is an open access article distributed under the Creative Commons Attribution License.
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DOI (Published version): 10.1155/2023/9756000
Abstract
Objective. Desmoid-type fibromatosis (DF), a rare benign tumour with similar treatment options to cancer, can adversely impact people’s lives, yet little qualitative research addressing patients’ experiences of DF exists. The present study aimed to understand the day-to-day experiences of individual...
| Published in: | European Journal of Cancer Care |
|---|---|
| ISSN: | 1365-2354 |
| Published: |
Hindawi Limited
2023
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| Online Access: |
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| URI: | https://cronfa.swan.ac.uk/Record/cronfa66149 |
| first_indexed |
2024-05-20T12:19:05Z |
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| last_indexed |
2024-11-25T14:17:36Z |
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cronfa66149 |
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2024-05-20T13:22:31.6230506 v2 66149 2024-04-24 Daily Living and Healthcare Experiences of Individuals Living with Desmoid-Type Fibromatosis: A Qualitative Investigation 76108f6ac5e9dccfc581a09f7e5ef333 0000-0002-6119-7025 Kim Dienes Kim Dienes true false 2024-04-24 PSYS Objective. Desmoid-type fibromatosis (DF), a rare benign tumour with similar treatment options to cancer, can adversely impact people’s lives, yet little qualitative research addressing patients’ experiences of DF exists. The present study aimed to understand the day-to-day experiences of individuals with DF and their experiences of healthcare. Methods. Semistructured, qualitative interviews were conducted by phone or email with 20 participants. Inductive thematic analysis was performed, structured with the Framework approach. Results. Many participants reported delays in diagnosis. This was attributed to them ignoring their symptoms or to healthcare professionals lacking awareness of DF. Healthcare experiences varied, with some participants expressing good support. Others felt unsupported, viewing staff as dismissive of difficulties. Comparisons between DF and cancer were commonly discussed. Some participants felt relieved that they did not have cancer; others perceived that their needs were secondary to cancer patients and believed they were treated as less important. Participants discussed negative impact of DF on psychosocial well-being. Chronic pain and activity limitations seemed to impact mood and relationships. Conclusion. Greater awareness and understanding of DF by health professionals may help to reduce diagnostic delay and improve support. Individuals may benefit from being treated by specialist DF teams. Journal Article European Journal of Cancer Care 2023 1 8 Hindawi Limited 1365-2354 1 11 2023 2023-11-01 10.1155/2023/9756000 COLLEGE NANME Psychology School COLLEGE CODE PSYS Swansea University Another institution paid the OA fee 2024-05-20T13:22:31.6230506 2024-04-24T13:59:48.9338432 Faculty of Medicine, Health and Life Sciences School of Psychology Megan Bowes 0000-0002-8568-5488 1 Catherine Coyle 2 Olga Husson 0000-0002-1387-8686 3 Kim Dienes 0000-0002-6119-7025 4 Rachael Powell 0000-0002-8023-8873 5 66149__30403__aea92a1e0e3246c9a9ce9cd37c5d748c.pdf 66149.VoR.pdf 2024-05-20T13:19:26.8573778 Output 326707 application/pdf Version of Record true © 2023 Megan Bowes et al. This is an open access article distributed under the Creative Commons Attribution License. true eng http://creativecommons.org/licenses/by/4.0/ |
| title |
Daily Living and Healthcare Experiences of Individuals Living with Desmoid-Type Fibromatosis: A Qualitative Investigation |
| spellingShingle |
Daily Living and Healthcare Experiences of Individuals Living with Desmoid-Type Fibromatosis: A Qualitative Investigation Kim Dienes |
| title_short |
Daily Living and Healthcare Experiences of Individuals Living with Desmoid-Type Fibromatosis: A Qualitative Investigation |
| title_full |
Daily Living and Healthcare Experiences of Individuals Living with Desmoid-Type Fibromatosis: A Qualitative Investigation |
| title_fullStr |
Daily Living and Healthcare Experiences of Individuals Living with Desmoid-Type Fibromatosis: A Qualitative Investigation |
| title_full_unstemmed |
Daily Living and Healthcare Experiences of Individuals Living with Desmoid-Type Fibromatosis: A Qualitative Investigation |
| title_sort |
Daily Living and Healthcare Experiences of Individuals Living with Desmoid-Type Fibromatosis: A Qualitative Investigation |
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76108f6ac5e9dccfc581a09f7e5ef333 |
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76108f6ac5e9dccfc581a09f7e5ef333_***_Kim Dienes |
| author |
Kim Dienes |
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Megan Bowes Catherine Coyle Olga Husson Kim Dienes Rachael Powell |
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| container_title |
European Journal of Cancer Care |
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2023 |
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2023 |
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Swansea University |
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1365-2354 |
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10.1155/2023/9756000 |
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Hindawi Limited |
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Faculty of Medicine, Health and Life Sciences |
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Faculty of Medicine, Health and Life Sciences |
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Faculty of Medicine, Health and Life Sciences |
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School of Psychology{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Psychology |
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Objective. Desmoid-type fibromatosis (DF), a rare benign tumour with similar treatment options to cancer, can adversely impact people’s lives, yet little qualitative research addressing patients’ experiences of DF exists. The present study aimed to understand the day-to-day experiences of individuals with DF and their experiences of healthcare. Methods. Semistructured, qualitative interviews were conducted by phone or email with 20 participants. Inductive thematic analysis was performed, structured with the Framework approach. Results. Many participants reported delays in diagnosis. This was attributed to them ignoring their symptoms or to healthcare professionals lacking awareness of DF. Healthcare experiences varied, with some participants expressing good support. Others felt unsupported, viewing staff as dismissive of difficulties. Comparisons between DF and cancer were commonly discussed. Some participants felt relieved that they did not have cancer; others perceived that their needs were secondary to cancer patients and believed they were treated as less important. Participants discussed negative impact of DF on psychosocial well-being. Chronic pain and activity limitations seemed to impact mood and relationships. Conclusion. Greater awareness and understanding of DF by health professionals may help to reduce diagnostic delay and improve support. Individuals may benefit from being treated by specialist DF teams. |
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2023-11-01T05:34:15Z |
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