Supportive Care in Cancer

, Volume 22, Issue 6, pp 1563–1570 | Cite as

From diagnosis through survivorship: health-care experiences of colorectal cancer survivors with ostomies

  • Virginia Sun
  • Marcia Grant
  • Carmit K. McMullen
  • Andrea Altschuler
  • M. Jane Mohler
  • Mark C. Hornbrook
  • Lisa J. Herrinton
  • Robert S. Krouse
Original Article

Abstract

Purpose

The journey from diagnosis through treatment to survivorship can be challenging for colorectal cancer (CRC) survivors with permanent ostomies. Memories of both the positive and negative health-care interactions can persist years after the initial diagnosis and treatment. The purpose of this paper is to describe the health-care experiences of long-term (>5 years) CRC survivors with ostomies.

Methods

Thirty-three CRC survivors with ostomies who were members of Kaiser Permanente, an integrated care organization, in Oregon, southwestern Washington and northern California participated in eight focus groups. Discussions from the focus groups were recorded, transcribed, and analyzed for potential categories and themes.

Results

Health-care-related themes described CRC survivors’ experiences with diagnosis, treatment decision-making, initial experiences with ostomy, and survivorship. Participants discussed both positive and negative health-care-related experiences, including the need for continued access to trained nurses for ostomy self-care, access to peer support, and resources related to managing persistent, debilitating symptoms.

Conclusions

Long-term CRC survivors with ostomies have both positive and negative health-care experiences, regardless of health-related quality of life (HRQOL) and gender. Long-term support mechanisms and quality survivorship care that CRC survivors with ostomies can access are needed to promote positive adjustments and improved HRQOL.

Structured abstract

The current literature in CRC survivorship suggests that HRQOL concerns can persist years after treatment completion. The coordination of care to manage persistent late- and long-term effects are still lacking for CRC survivors living with an ostomy. Findings from this qualitative analysis will aid in the development of support strategies that foster more positive adjustments for CRC survivors living with an ostomy and support their ongoing ostomy-related needs.

Keywords

Colorectal cancer Survivorship Ostomy Quality of life 

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Copyright information

© Springer-Verlag Berlin Heidelberg 2014

Authors and Affiliations

  • Virginia Sun
    • 1
  • Marcia Grant
    • 1
  • Carmit K. McMullen
    • 2
  • Andrea Altschuler
    • 3
  • M. Jane Mohler
    • 4
    • 5
    • 6
  • Mark C. Hornbrook
    • 2
  • Lisa J. Herrinton
    • 7
  • Robert S. Krouse
    • 4
    • 8
  1. 1.Division of Nursing Research & Education, Department of Population SciencesBeckman Research Institute of the City of HopeDuarteUSA
  2. 2.Center for Health ResearchKaiser Permanente NorthwestPortlandUSA
  3. 3.Kaiser Permanente Medical Care ProgramOaklandUSA
  4. 4.College of MedicineUniversity of ArizonaTucsonUSA
  5. 5.College of Public HealthUniversity of ArizonaTucsonUSA
  6. 6.College of PharmacyUniversity of ArizonaTucsonUSA
  7. 7.Division of ResearchKaiser Permanente Medical Care ProgramOaklandUSA
  8. 8.Southern Arizona Veterans Affairs Health Care SystemTucsonUSA

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