Facilitator Notes

Facilitator Note 1

One of the major facilitation challenges for this session is managing the tension between “getting through the session” in terms of covering all the material vs. allowing group process to direct the flow of the session. Another is managing group discussion when members have strong feelings or opinions. If you find that the discussion veers too far off course, you might choose to make comments as a participant to re-focus the conversation.

Facilitator Note 2

Alert participants that informational resources are available, but that the focus on the discussion will be on the issues that arise from their experiences with decision making and informed consent. The following are resources regarding the timing and implications of spinal fusion surgery available from the Muscular Dystrophy Association’s website:

Facilitator Note 3

This film is not intended to suggest that clinicians fail to listen to patients, but rather to point out the ways that we may not be hearing each other clearly or missing opportunities to improve our communication with each other.

Facilitator Note 4

Be sure to invite quite people to contribute.

Facilitator Note 5

Each individual was concerned about a certain Impact on their quality of life – doctor wanted to confirm that the patient and family understood the long-term consequences of not doing the surgery; patient wanted to hear what will this mean on a day-to-day basis regarding what matters to me – playing video games, opening doors; Parent wanted to hear about the practical care-giving aspects – feeding, toileting, and the meaning of those things to a parent as they watch child suffer.

Facilitator Note 6

If answers focus on parent and clinician interaction, ask “What about the physical and emotional impact of these decisions on you, as a parent?”

Facilitator Note 7

Facilitators may want to consider saying the following: “When clinicians feel as if parents are not listening to their advice or parents do not feel like their concerns are being heard a counter-productive cycle can begin. Let’s explore how we respond to that…”

Facilitator Note 8

Invite participants to reflect on what they noticed about their thoughts, feelings or body sensations. For example, do they feel tightness anywhere? What is the feeling tone? What thoughts are prominent?

Facilitator Note 9

Pause for a moment to reflect on what is arising for people during this section. Invite people to notice their responses and to let them go before you continue to the next section.