Learning to Live With
Lymphedema Toolkit

Introduction to the toolkit

The LLWL Toolkit was developed by social science researchers with expertise in lymphedema, psychology, and creative practices. With a foundation of a decade of empirical work in the area we have developed and tested these workshops at multiple sites and they have been administered effectively by various facilitators.

The LLWL Toolkit includes:

  1. A PowerPoint presentation with facilitator’s notes for a series of 4 workshops;
  2. A video;
  3. A handbook that participants can complete. These complementary resources have been co-constructed by participants who live with lymphedema.

We have made this toolkit available because our workshops and evaluations have demonstrated the effectiveness of the various interventions contained within for individuals living with lymphedema.

Who should use this Toolkit?

Workshop facilitators should be familiar with the challenges of living with lymphedema, both those that are physical and psychological. Our workshops included additional facilitators (e.g., physiotherapist, physician, occupational therapist) to provide a holistic experience but this may not be necessary in all cases.
Alternatively, people living with lymphedema may wish to review the content and complete the activities independently.

Toolkit Development

The Learning to Live with Lymphedema research program began with Dr. Ryan Hamilton's research on developing coping skills after breast cancer. After completing that project, Dr. Hamilton began collaborating with Dr. Roanne Thomas from the University of Ottawa. Dr. Thomas had been working on projects with cancer survivors who were experiencing lymphedema. The Learning to Live with Lymphedema research program focuses on the psychological and social impacts of living with secondary lymphedema after cancer. To date, there are three studies associated with this research program:

  • Study 1 aimed to document hope and coping in people living with lymphedema. Thirteen people living with lymphedema were interviewed about their experiences. The results of these interviews were used to design workshops, using the original positive self-talk handbook developed by Dr. Hamilton as a framework.

  • Study 2 involved the implementation of the workshops. The team then evaluated the appropriateness and potential impact of the workshops on hope and quality of life. Nineteen cancer survivors with secondary lymphedema took part in this stage of the research program. Workshop participants were interviewed and given questionnaires to learn from their experiences of the intervention. Following the workshops, a video was produced with four of the participants and is referenced in this handbook and freely available.View video

  • Study 3 incorporated the video and workshops were provided to participants in Montreal.  New research with health professionals is ongoing.