Facilitator Note 1
A flipchart could be used to capture responses.
Facilitator Note 2
Possible prompts regarding the essence of quality of life:
- What do you notice about the similarities or differences in your responses about quality of life?
- How do they compare to what you’ve heard from patients and their family members?
- What key components/values seem to be critical in defining “quality of life” for a child or adolescent with SCD?
Facilitator Note 3
Inform group that Davon was one day post-inpatient stay/crisis. He is fatigued in these films.
Facilitator Note 4
Introduce the next section of the discussion as “Unpredictability” and refer to how this is portrayed in the film by participants who say: “I never really know that I’ll be fine” and “I don’t know what will happen day to day.
Facilitator Note 5
Those who do not plan for the future may not do so due to attitudes/fears about their disease. Explore what those fears or attitudes might be.
Facilitator Note 6
Probe possible responses such as: cure for the disease, cure for certain symptoms, cure for issues related to quality of life or emotional/physical pain, etc.
Facilitator Note 7
After exploring participant responses, share the following: Keene and Serwint’s study comparing hope between clinicians and families suggests that parents do not see a tension between hope and accepting the reality of the illness/prognosis. For them, both concepts (hope and reality) can co-exist. In contrast, clinicians view hope as being in tension with accepting the reality of the illness or prognosis. The poorer the clinicians’ view of the patient’s future the greater the tension with hope and the more they want parents to acknowledge the reality of the situation.
Facilitator Note 8
In Keene and Serwint’s study, clinicians are mixed in their view about their role in fostering or extinguishing hope.
Facilitator Note 9
Based on participant feedback, acknowledge that all of the responses represent aspects of healing, using the following quote:
“Healing means more than a physical cure. The state of illness inflicts psychological, social, and even spiritual challenges to the ill individual. To heal is to become whole again and to return as far as possible to what one considers a normal life. Ideally, healing involves a cure, but when a cure is not possible, it still involves restoring function, maintaining function or, at the very least, regaining the sense of balance and the integration of meaning and living.” (from The Health Care Professional As Friend and Healer: Building on the Work of Edmund D. Pellegrino. Eds., Thomasma and Kissell, Georgetown University Press, 2000).
Facilitator Note 10
The following plenary will cover the following themes:
- Introduction to Palliative Care and SCD
- Identification of how palliative care can address physical and emotional pain experienced by patients and their family members