‘Because Everybody is so Different’: a qualitative analysis of the lived experiences and information needs of rectal cancer survivors

Abstract

ObjectiveTo (1) characterise (A) the lived experiences and (B) information needs of patients with rectal cancer; and (2) compare to the perceived lived experiences and information needs of colorectal surgeons.DesignWe conducted 1-hour semistructured qualitative interviews, dual independent transcript coding and thematic analysis.Setting/participantsInterviews included rectal cancer survivors (stages I–III), some accompanied by caregivers, at Dartmouth-Hitchcock Medical Center and experienced colorectal surgeons.ResultsWe performed 25 interviews involving 30 participants, including 15 patients with 5 caregivers, plus 10 physicians. Two major themes emerged. First, patients reported major impacts on their lives following rectal cancer, including on their everyday lives and leisure activities; identity, self-confidence and intimacy; mental health, especially anxiety. These impacts were mediated by their medical experiences, lifestyle and attitudes. Second, the diversity of effects on patients’ lives means that care, counselling and information needs should be personalised for a better medical experience and outcomes. Surgeons did not report knowledge of the full range of patient experiences and reported limited counselling in key areas, particularly concerning intimacy and mental health.ConclusionRectal cancer diagnosis, treatment and survivorship dramatically affect all people, regardless of which surgical treatment they undergo. Effects are varied and necessitate customised care, counselling and information, which surgeons are not currently providing. Because rectal cancer affects every part of patients’ lives, they need holistic support and information. Patients would benefit from substantial support after treatment as they establish a new normal.

Physicians perceive that ostomates have decreased quality of life but not overall health: An international survey of physicians

“…The survey was developed after prior qualitative work identified that patients diagnosed with rectal cancer who had undergone surgical treatment felt they could have used more information/support regarding ostomy care. The motivation for the study was based on our previous qualitative work on the lived experience of rectal cancer survivors in which an extensive qualitative analysis was conducted [14]. From this work, we identified areas of improvement, including differences in perception and knowledge of physicians about ostomies, the value of wound ostomy and continence nurses and the misinformation provided to people with ostomies regarding the clinical care of an ostomy.…”

Shared Decision-Making, Sphincter Preservation, and Rectal Cancer Treatment: Identifying and Executing What Matters Most to Patients

“…75 Qualitative work supports that rectal cancer survivors experience major-but varied-impacts on their lives informed by medical experiences, lifestyles, and attitudes, regardless of permanent ostomy or reconstruction after TME. 78 Other studies have found lower scores with permanent ostomies in some domains. [79][80][81][82][83][84][85][86][87][88][89][90] Lower body image scores in patients with permanent ostomies is the most common domain affected.…”

“…76 Moreover, those with permanent ostomies can endure parastomal hernias, prolapse, and pouching dysfunction that rivals the incontinence and pelvic floor dysfunction with reconstruction. 78 Quality of life may be lower in younger patients than older ones irrespective of permanent ostomy or reconstruction. 75 Qualitative work supports that rectal cancer survivors experience major-but varied-impacts on their lives informed by medical experiences, lifestyles, and attitudes, regardless of permanent ostomy or reconstruction after TME.…”

The lived experience

“…There were no patients involved in the concept, design, analysis or drafting of the study results, nor was any patient involved in the distribution of the survey. The authors write that they used a prior study to advise on the lived experience for the current work [23]. However, there were no common themes or questions, and the only applicable result for the current work was that surgeons did not report knowledge of the full range of patient experiences and reported limited counselling in key areas important to patients [23].…”

“…The authors write that they used a prior study to advise on the lived experience for the current work [23]. However, there were no common themes or questions, and the only applicable result for the current work was that surgeons did not report knowledge of the full range of patient experiences and reported limited counselling in key areas important to patients [23]. This gap between patients and surgeons is even more reason to include patients and those with the lived experience in the research.…”