Adapting to ulcerative colitis to try to live a ‘normal’ life: a qualitative study of patients’ experiences in the Midlands region of England
Objective To provide a framework that is able to categorise whether patients are able to adapt to and lead a ‘normal’ life with ulcerative colitis (UC) and to detail the factors that influence this.Design Qualitative research study using in-depth semi-structured interviews.Setting Four clinical site...
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2017-08-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/7/8/e017544.full |
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| author | Rachel Cooney Christel McMullan Dmitri Nepogodiev Laura Magill Thomas D Pinkney Jonathan M Mathers Laura L Jones Shri Pathmakanthan |
| author_facet | Rachel Cooney Christel McMullan Dmitri Nepogodiev Laura Magill Thomas D Pinkney Jonathan M Mathers Laura L Jones Shri Pathmakanthan |
| author_sort | Rachel Cooney |
| collection | DOAJ |
| description | Objective To provide a framework that is able to categorise whether patients are able to adapt to and lead a ‘normal’ life with ulcerative colitis (UC) and to detail the factors that influence this.Design Qualitative research study using in-depth semi-structured interviews.Setting Four clinical sites in the West and East Midlands regions of England.Participants 28 adult patients diagnosed with UC for years between 1 and 22.Results Medication was rarely sufficient for patients to adapt to UC and live as ‘normal’ a life as possible. Virtually all patients tested and adopted non-medical adaptation methods to improve physical and psychological well-being, to help them carry on working and to prevent embarrassment. In addition, some patients benefited from outside support providing them with practical, emotional and/or financial help. In conjunction with adaptation strategies and the time to adapt, this meant that some patients with severe clinical disease were able to maintain a sense of normality in life. Patients reported that clinicians were not always receptive to discussion of the broader context of life with UC.Conclusions Patients’ experience of UC and their ability to adapt in order to maintain a sense of normality in life is a complex interplay of symptoms, adaptation strategies and outside support. Over time patients test out a variety of non-medical adaptation strategies. Awareness of this may help clinicians and researchers to understand patients’ views on the role of medical and other therapies. Further research around the utility of this framework in clinical practice and research is now required.Trial registration number ISRCTN56523019, results. |
| format | Article |
| id | doaj-art-1c1fcda267284a369f07e1105b47c9b9 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2017-08-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-1c1fcda267284a369f07e1105b47c9b92025-02-10T15:25:14ZengBMJ Publishing GroupBMJ Open2044-60552017-08-017810.1136/bmjopen-2017-017544Adapting to ulcerative colitis to try to live a ‘normal’ life: a qualitative study of patients’ experiences in the Midlands region of EnglandRachel Cooney0Christel McMullan1Dmitri Nepogodiev2Laura Magill3Thomas D Pinkney4Jonathan M Mathers5Laura L Jones6Shri Pathmakanthan714 Department of Gastroenterology, University Hospitals Birmingham NHS Trust, Birmingham, UKCentre for Patient-Reported Outcomes Research, University of Birmingham, Birmingham, UKNIHR Global Health Research Unit on Global Surgery, Institute of Applied Health Research, University of Birmingham, Birmingham, UK3 Birmingham Clinical Trials Unit, University of Birmingham, Birmingham, UKspecialist registrar, general surgeryInstitute of Applied Health Research, University of Birmingham, Birmingham, West Midlands, UKInstitute of Applied Health Research, University of Birmingham, Birmingham, UK4 Department of Gastroenterology, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UKObjective To provide a framework that is able to categorise whether patients are able to adapt to and lead a ‘normal’ life with ulcerative colitis (UC) and to detail the factors that influence this.Design Qualitative research study using in-depth semi-structured interviews.Setting Four clinical sites in the West and East Midlands regions of England.Participants 28 adult patients diagnosed with UC for years between 1 and 22.Results Medication was rarely sufficient for patients to adapt to UC and live as ‘normal’ a life as possible. Virtually all patients tested and adopted non-medical adaptation methods to improve physical and psychological well-being, to help them carry on working and to prevent embarrassment. In addition, some patients benefited from outside support providing them with practical, emotional and/or financial help. In conjunction with adaptation strategies and the time to adapt, this meant that some patients with severe clinical disease were able to maintain a sense of normality in life. Patients reported that clinicians were not always receptive to discussion of the broader context of life with UC.Conclusions Patients’ experience of UC and their ability to adapt in order to maintain a sense of normality in life is a complex interplay of symptoms, adaptation strategies and outside support. Over time patients test out a variety of non-medical adaptation strategies. Awareness of this may help clinicians and researchers to understand patients’ views on the role of medical and other therapies. Further research around the utility of this framework in clinical practice and research is now required.Trial registration number ISRCTN56523019, results.https://bmjopen.bmj.com/content/7/8/e017544.full |
| spellingShingle | Rachel Cooney Christel McMullan Dmitri Nepogodiev Laura Magill Thomas D Pinkney Jonathan M Mathers Laura L Jones Shri Pathmakanthan Adapting to ulcerative colitis to try to live a ‘normal’ life: a qualitative study of patients’ experiences in the Midlands region of England BMJ Open |
| title | Adapting to ulcerative colitis to try to live a ‘normal’ life: a qualitative study of patients’ experiences in the Midlands region of England |
| title_full | Adapting to ulcerative colitis to try to live a ‘normal’ life: a qualitative study of patients’ experiences in the Midlands region of England |
| title_fullStr | Adapting to ulcerative colitis to try to live a ‘normal’ life: a qualitative study of patients’ experiences in the Midlands region of England |
| title_full_unstemmed | Adapting to ulcerative colitis to try to live a ‘normal’ life: a qualitative study of patients’ experiences in the Midlands region of England |
| title_short | Adapting to ulcerative colitis to try to live a ‘normal’ life: a qualitative study of patients’ experiences in the Midlands region of England |
| title_sort | adapting to ulcerative colitis to try to live a normal life a qualitative study of patients experiences in the midlands region of england |
| url | https://bmjopen.bmj.com/content/7/8/e017544.full |
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