Self-management goals of cancer survivors with an ostomy.

OBJECTIVES: Ostomies due to cancer surgery impose complex and enduring care challenges that necessitate cancer survivors" self-management. The objective of this analysis is to evaluate ostomates' self- management goals using a qualitative approach. METHODS: A multi-site randomized controlled trial testing the Ostomy Self-Management Training program (OSMT) was delivered via telehealth to a group of cancer survivors with an ostomy randomized to either the OSMT program with goal setting or usual care (UC), without goal setting. Goals were classified by type and frequency according to a modified City of Hope Health-Related Quality of Life framework (physical, psychological, social, spiritual, ostomy-specific, and healthcare quality domains), using a directed and systematic content analysis approach. RESULTS: The 524 self-management goals analyzed by domain frequencies physical (29.4%), ostomy specific (29.0%) and social well-being (25.0%) were predominant. Managing other health issues (7.6%), psychological issues (6.0%), and spiritual well-being issues (3.0%) were next. Common self-management themes were ostomy care independence (87.5%), handling cancer-related issues (62.5%), achieving acceptance (56.2%), resuming physical activity (43.0%), and maintaining fluid/diet balance (43.0%). DISCUSSION/CONCLUSION: Goal-setting offers insights into self-management concerns of cancer survivors with ostomies. Results demonstrate the broad aspects of self-management ostomates face. PRACTICE IMPLICATIONS: Self-management training with patient goal-setting may be used to help ostomates with cancer and their health care providers identify areas for needed education and support.

An Ostomy Self-management Telehealth Intervention for Cancer Survivors: Technology-Related Findings From a Randomized Controlled Trial.

BACKGROUND: An Ostomy Self-management Telehealth (OSMT) intervention by nurse educators and peer ostomates can equip new ostomates with critical knowledge regarding ostomy care. A telehealth technology assessment aim was to measure telehealth engineer support requirements for telehealth technology-related (TTR) incidents encountered during OSMT intervention sessions held via a secure cloud-based videoconferencing service, Zoom for Healthcare. OBJECTIVE: This paper examines technology-related challenges, issues, and opportunities encountered in the use of telehealth in a randomized controlled trial intervention for cancer survivors living with a permanent ostomy. METHODS: The Arizona Telemedicine Program provided telehealth engineering support for 105 OSMT sessions, scheduled for 90 to 120 minutes each, over a 2-year period. The OSMT groups included up to 15 participants, comprising 4-6 ostomates, 4-6 peer ostomates, 2 nurse educators, and 1 telehealth engineer. OSMT-session TTR incidents were recorded contemporaneously in detailed notes by the research staff. TTR incidents were categorized and tallied. RESULTS: A total of 97.1% (102/105) OSMT sessions were completed as scheduled. In total, 3 OSMT sessions were not held owing to non-technology-related reasons. Of the 93 ostomates who participated in OSMT sessions, 80 (86%) completed their OSMT curriculum. TTR incidents occurred in 36.3% (37/102) of the completed sessions with varying disruptive impacts. No sessions were canceled or rescheduled because of TTR incidents. Disruptions from TTR incidents were minimized by following the TTR incident prevention and incident response plans. CONCLUSIONS: Telehealth videoconferencing technology can enable ostomates to participate in ostomy self-management education by incorporating dedicated telehealth engineering support. Potentially, OSMT greatly expands the availability of ostomy self-management education for new ostomates. TRIAL REGISTRATION: ClinicalTrials.gov NCT02974634; https://clinicaltrials.gov/ct2/show/NCT02974634.

Cancer survivors' challenges with ostomy appliances and self-management: a qualitative analysis.

PURPOSE: An ostomy poses significant health-related quality of life (HRQOL) issues for cancer survivors. Survivors must learn to manage pouching appliances and adjust to the psychosocial consequences of living with an ostomy. We explored, through qualitative analysis, the challenges with self-management and ostomy appliances reported by cancer survivors. METHODS: Pooled data from two studies with a question on the greatest challenge of living with an ostomy and intervention session notes were analyzed using content analysis approach. The themes were reviewed and agreed upon by the research team, and counts were tallied for each theme based on the number of times they were mentioned by participants. RESULTS: Of the 928 greatest challenge responses and session notes, a total of 106 mentions (11%) were focused on ostomy appliances, associated repercussions, and time taken for ostomy care. Eight themes emerged: bleeding, pain, leakage, skin problems/irritation/rash, wafer-related issues, materials getting under the wafer, time to care for ostomy, and solutions to clean the stoma. Challenges described included poor wafer adherence, allergic reactions to adhesives, and pain around the stoma site. These challenges resulted in anxiety related to leakage, odor, and/or skin irritation, which negatively impacted on participation in social activities and self-confidence with ostomy care. CONCLUSIONS: Cancer survivors living with an ostomy experience multiple obstacles with ostomy appliances and caring for their ostomy. Continued innovation in ostomy appliance design and technology is needed to help cancer survivors with successfully managing ostomy care.