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Colorectal cancer survivors’ quality of life: a qualitative study of unmet need
  1. Amanda Drury1,2,
  2. Sheila Payne3 and
  3. Anne-Marie Brady2
  1. 1 School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, D04 V1W8, Ireland
  2. 2 School of Nursing and Midwifery, Trinity College Dublin, Dublin, Dublin 2, Ireland
  3. 3 School of Health and Medicine, University of Lancaster, Lancaster, Lancashire, UK
  1. Correspondence to Dr Amanda Drury; amanda.drury{at}ucd.ie

Abstract

Objective Cancer survivors’ perceptions of healthcare have been identified as a predictor of quality of life (QoL) outcomes. This study aims to explore colorectal cancer (CRC) survivors’ perceptions of how cancer-related healthcare affects their QoL.

Methods Semistructured interviews were conducted with 22 CRC survivors receiving follow-up care between 1 and 5 years post diagnosis. Interviews were recorded, transcribed and analysed thematically.

Results Five themes described the impact of healthcare experiences on CRC survivors’ QoL. While cancer survivors spoke positively of their relationships with healthcare professionals, many experienced a range of unmet information and supportive care needs. Participants described a range of positive and negative experiences, as power dynamics and navigation of healthcare systems had implications for their QoL. Where negative healthcare events aligned, survivors’ autonomy, dignity and confidence were undermined, and survivorship issues could be inadequately addressed. To address persistent unmet needs, survivors developed a safety net(work) of supports to bridge the gap of unmet needs in healthcare with varying outcomes.

Conclusions Cancer survivors’ experience of follow-up and healthcare can positively or negatively affect their QoL. Preparation for cancer survivorship must be incorporated into the acute phase of diagnosis and treatment and interlinked with clear pathways of survivorship care and accessible supportive care, which support survivors to be equal partners in their healthcare. Understanding cancer survivors’ knowledge, expertise and mastery of their condition is essential to ensure delivery of person-centred supportive care that adequately addresses the survivor’s unmet needs.

  • supportive care
  • survivorship
  • gastrointestinal (lower)
  • quality of life

Data availability statement

The datasets generated during and/or analysed during the current study are not publicly available due to data protection and privacy concerns. Excerpts of data are available from the corresponding author upon reasonable request.

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Data availability statement

The datasets generated during and/or analysed during the current study are not publicly available due to data protection and privacy concerns. Excerpts of data are available from the corresponding author upon reasonable request.

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Footnotes

  • X @druryal, @SheilaPayne1

  • Contributors AD designed the study and data collection instruments; monitored data collection; wrote the data analysis plan; cleaned, analysed and interpreted the data; and drafted and revised the paper. AD is guarantor. SP and A-MB supervised the project, engaged in the analysis and interpretation of the data, critically reviewed and approved the paper.

  • Funding This research was funded by the Health Research Board Research Training Fellowship for Healthcare Professionals 2014 (grant number HPF.2014.715).

  • Competing interests SP and A-MB report no competing interest. AD’s time was funded by the Health Research Board Research Training Fellowship at the School of Nursing and Midwifery Trinity College Dublin. The authors alone are responsible for the content and writing of this paper.

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

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.