Competency building for self-management and self-care: evidence informed development of an empowerment course for breast cancer survivors

Abstract

18626 Purpose: To improve survivorship outcomes by empowering and preparing survivors to self- manage their health. We describe the evidence-informed development of a patient empowerment course “Managing Your Cancer Journey” offered in the Breast Cancer Survivorship Program at Princess Margaret Hospital in Toronto, Canada. Methods: Audio-taped and transcribed focus groups (3; n = 16 patients, August 2004), interviews (n = 8 lymphedema patients, spring 2004, n = 8 patients, spring 2005) were held for patient directed guidance in survivorship course and program development. A comprehensive literature review was conducted to develop a theoretical framework for empowerment. Three main competencies: knowing, navigating and negotiating emerged and were developed into 5 ×1.5 hour classes facilitated by two social workers in collaboration with health professionals and community organizations. Feedback from survivors in a community forum (n = 40) and during piloting with survivors (n = 10) and educators was solicited. Analysis of transcripts and observer/consultant debriefings were analyzed for emergent themes. Results: Respondents recommended program interventions that allowed people to gain mastery or a perceived sense of control over their lives with cancer. Survivors and expert consultants prioritized 3 major domains for the survivorship program: psychosocial support, information provision, and support for dealing with the physical effects of breast cancer. In response, outcome measures for empowerment will include: patient satisfaction, cancer knowledge, self-efficacy in disease management, empowerment, and depression. Conclusions: Ongoing iterative feedback from and piloting with the survivor target audience and embedding the course within the hospital’s strategic plan for patient centred care and competency building are keys to successful course implementation. No significant financial relationships to disclose.