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Adapting to ulcerative colitis to try to live a ‘normal’ life: a qualitative study of patients’ experiences in the Midlands region of England
  1. Christel McMullan1,
  2. Thomas D Pinkney2,
  3. Laura L Jones1,
  4. Laura Magill3,
  5. Dmitri Nepogodiev2,
  6. Shri Pathmakanthan4,
  7. Rachel Cooney4,
  8. Jonathan M Mathers1
  1. 1 Institute of Applied Health Research,University of Birmingham, Birmingham, UK
  2. 2 Academic Department of Surgery, University of Birmingham, Birmingham, UK
  3. 3 Birmingham Clinical Trials Unit, University of Birmingham, Birmingham, UK
  4. 4 Department of Gastroenterology, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK
  1. Correspondence to Dr. Jonathan M Mathers; j.m.mathers{at}bham.ac.uk

Abstract

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.

  • qualitative studies
  • ulcerative colitis
  • adaptation
  • normality

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Contributors All authors made a substantial contribution to the manuscript. JMM designed and conceived the qualitative research with TDP. CM conducted the interviews. Data analysis was carried out by CM, JMM and LLJ, and interpretations checked with all authors. The manuscript was drafted jointly by CM and JMM. All authors revised the manuscript for intellectual content. All authors have read and approved the final manuscript.

  • Funding This work was supported by a grant from the Research for Patient Benefit (RfPB) programme of the National Institute for Health Research (NIHR) (grant no: ISRCTN56523019).

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval Ethical approval for the ACCURE-UK trial was granted from the North East Tyne and Wear South 200 Research Ethics Committee, REC number 14/NE/1143.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available.

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