Abstract
Background Spiritual well-being (SpWB), defined as hopefulness, inner peace, and sensing a reason to be alive, is integral to health related quality of life (HRQOL). It is only partially related to spirituality and religiosity. The challenges of colorectal cancer (CRC) and subsequent bodily changes can affect SpWB. We explored expressions of SpWB reported by CRC survivors with ostomies.
Methods We recruited all adult CRC survivors (>=5 years) with permanent ostomies who were members of Kaiser Permanente Northwest, Northern California, or Hawai‘i during 2000–2006 to complete a mailed survey (n=283). We asked participants to respond to an open-ended question about the greatest challenge they encountered in having an ostomy. Responses from the 62% (176 of 283) of patients who answered this question were analyzed based on the City of Hope HRQOL model for
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content related to SpWB, and
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to identify and categorize the SpWB themes found.
Results The responses of 51% (90 of 176) of participants contained SpWB content. Seventeen SpWB themes were identified, reflecting positive, negative, and ambivalent dimensions. Some responses contained multiple themes but each theme was coded only once for each person. Fifty-three of 90 people (59%) expressed positive themes which included “positive attitude” “appreciate life more” “helping others helps me” “strength through religious faith” “leading an active life” and “I am fortunate.” Negative themes included “struggling to cope” “not feeling ‘normal’” and “loss” and were least common, expressed by only 28 of 90 people (31%). Ambivalent themes were most common (67%; 60 of 90 individuals) and included “learning acceptance” “ostomy is the price for survival” “reason to be around despite suffering” and “continuing to cope and function despite challenges.”
Discussion These CRC survivors with ostomies infrequently cited negative SpWB as a major challenge, though the greatest number of SpWB responses were ambivalent. More commonly, SpWB themes were mentioned as a source of resilience or part of the struggle to adapt to their altered body after cancer surgery. SpWB interventions should be broadly constructed to include the many types of SpWB, as opposed to narrowly defining SpWB only in terms of spirituality or religiosity.
