Duchenne Muscular Dystrophy: Facilitator’s Guide

DEDICATION AND ACKNOWLEDGEMENTS    MODULE DIRECTORY

Learning Objectives

Throughout this curriculum, participants will:

  1. Develop an understanding of pediatric palliative care principles and their relevance in the context of pediatric neuromuscular disease (NMD) with a particular focus on Duchenne Muscular Dystrophy (DMD).
  2. Strengthen their understanding of the value and purpose of an interdisciplinary team approach to the integration of pediatric palliative care principles and practices in the context of DMD.
  3. Explore creative strategies for enhancing the comprehensive and holistic care of children and families affected by DMD.
  4. Evolve strategies for encouraging reflective practice among participants.
  5. Become knowledgeable about the range of educational and clinical resources currently available in pediatric palliative care and DMD.
  6. Explore networking opportunities with other professionals and family members to address mutual needs and interests with regard to improving the quality of life for children and families affected by DMD.

“Let me keep my mind on what matters, which is my work, which is mostly standing still and learning to be astonished.” ~Mary Oliver


To create an atmosphere of safety and trust in order to facilitate conversation in your training session, it is important to set-up expectations for participants to provide positive feedback and support. The following “Responsibilities for Collaborative Learning” may be provided to frame the training event.

Responsibilities for Collaborative Learning

As a participant in the collaborative learning process, we ask that you:

  • Contribute to creating an atmosphere of trust and respect. Promote the spirit of collaborative learning among all participants.
  • Listen attentively. Create a climate in which participants feel comfortable sharing personal thoughts, reflections, and feelings.
  • Be clear and concise when sharing thoughts and ideas. Maintain necessary time boundaries in group discussions.
  • Create space for “quiet voices” to have room for expression.
  • Be respectful of the personal, professional, and cultural frame of reference of other participants.
  • Act according to the guiding ethic that there is rarely only one “right” answer in any discussion. The greatest learning is likely to occur when multiple and different perspectives (medical, nursing, family, psychosocial, spiritual) are shared in respectful dialogue among participants.
  • Offer personal thoughts and ideas as one option among several. Acknowledge alternate ways to view the same situation.
  • Use discretion in regard to personal information that has been shared.
  • Engage fully in all sessions.

General Guidelines for Facilitating Small Groups

Each small group is organized around the viewing of a film or engaging in an experiential exercise followed by group discussion. At the outset of each small group, it may be helpful for the facilitator to set a few ground rules for the discussions:

  • Convey the message to participants that there is no right response, and that the group’s discussion will be more valuable if there are a variety of views and perspectives.
  • Invite people to engage within their sphere of comfort. It is possible that some of the film and curricular content can evoke positive and negative feelings. The purpose of the curricula is to surface these within each person’s comfort zone. Each person should be mindful of their own needs and boundaries for involvement.
  • Participants are invited to notice their responses to the films and discussions by monitoring their bodies, emotions and thoughts as clues for further investigation individually and collectively.
  • Remind participants that all opinions should be treated in a respectful manner, and effort should be made to include as many voices as possible. (If one or two individuals begin to dominate the discussion, make a comment about the value of hearing from as many people as possible.)
  • Explain that if individuals choose to share on a personal level, their comments should not be repeated in other settings.
  • Strongly encourage participants to arrive on time and stay for the duration of the seminar. Late arrivals and disruptions in the group will negatively affect the educational experience.

About the Films:

  • Clarify that the film segment is not a case study to be analyzed or interpreted, but rather family stories that are provided to stimulate group reflection and discussion about clinical and organizational practice.
  • The film segments include positive as well as critical comments about health care professionals. It is important to establish an atmosphere in which “mistakes” or negative behaviors on the part of practitioners are viewed as constructive learning opportunities for all participants, and not as a judgment about any single professional discipline or behavior.
  • These films, while created at Johns Hopkins Hospital, are not about care at Johns Hopkins. These are films about (non-clinical) aspects of patient care (e.g., quality of life, communication, ethics) provided to young people with DMD and their families. The films are not meant to suggest a standard of care but rather to explore some of the prominent issues that arise from conversations with patients and families.
  • Our hope is that the themes that arise during the training will be common across spectrums of care for adolescents with these diseases. We recognize that the stories in these films do not necessarily reflect the perspectives and experiences of all patients and families. We chose these particular patients and families to elicit certain emotional responses and to explore specific aspects of pediatric palliative care. We invite you to watch these as they are meant to be: films to help clinicians see things from the perspective of a select group of patients and families. Notice if you find yourself wanting to debate the justification for the care these patients are receiving. If you find yourself going in this direction, pause and redirect your focus back to questions that are associated with each module.

Materials:

Prepare: In preparation for facilitating this workshop, review these materials. Give careful attention to the questions you feel are the most important messages conveyed in each film. You may not be able to get through all of the suggested questions below, use the energy of the group as a guide about the direction of content and the needs of the group.

Resources and References: Familiarize yourself with the professional literature included in the Resources and References handout. Refer to these items when appropriate in group discussion. Each participant will receive a Related References list to additional resources which they can obtain on-line through our Vision of Hope blog (this information is contained on the resource list.) Please remind group members of the references list and encourage them to review additional resources on their own time.

Basic Outline of Small Group Sessions:

  1. Introductions, checking-in, or de-briefing plenary (~5 – 10 minutes)
  2. Show trigger film (~7 minutes)
  3. Create a space for refection—Invite participants to look inside themselves by being quiet and writing about their personal reflections on each film (~2 minutes)
  4. Discussion (~60 – 75 minutes)
  5. Application to self and home institution (~5-15 minutes)


Leading the Session:

Begin the session by conveying the following introductory concepts:

In this seminar, we are going to explore…. We will watch a film segment that presents…. The videotape is approximately 7-9 minutes long. The remainder of the session will be devoted to discussion organized around focused questions.

  • Review the learning objectives with participants.
  • Play the videotape segment.
  • As you proceed with the discussion questions, read each one aloud and then invite discussion.

Preparing to Lead/Planning your Training Module

Print: This Facilitator’s Guide in its entirety, including the participant handouts that appear at the end.

Review:

  • The “General Guidelines for Facilitating Seminars,” which appear below.
  • This Facilitator’s Guide in its entirety, including attachments.
  • The corresponding film and/or Powerpoint segment

Arrange for:

  • A registration process to determine how many people will attend the seminar.
  • A room large enough for the number of registered participants, set up around a table or in such a way that participants are facing each other.
  • A DVD player, television monitor, flipchart, and markers. Check to determine that the equipment is working properly.

Obtain:

  • A copy for each participant of the handouts and resources that appear at the end of this module
  • “Seminar Learning Objectives and Discussion Questions”

Prepare:

  • In preparation for facilitating this workshop, give yourself ample time to view the film, review these materials, and think about whether the material should be adapted in any way for the particular audience with whom you are working.
  • Give careful attention to what you feel are the most important messages conveyed by the film and/or Powerpoint presentation.

Leading the Session:

  • Distribute the “Learning Objectives and Discussion Questions” handout.
  • Review the learning objectives with participants.
  • Play the film or Powerpoint segment.
  • As you proceed with the discussion questions, read each one aloud and then invite discussion. (Notes to facilitators are indicated by “Facilitator Note” superscript link.)

Additional Resources and Materials

This activity is re-printed or adapted here with permission of: The Initiative for Pediatric Palliative Care (www.ippcweb.org) Copyright 2003 Education Development Center, Inc.

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