“Navigating the Hard Times” focuses on identification of sources of pain, suffering, and resilience in patients, caregivers, and family members affected by Sickle Cell Disease.
This module typically takes around 75 minutes to complete. A more detailed module structure can be found in the SCD Facilitator’s Guide.
- Pain and Suffering
- Caregiver Resilience
- Identify the range of challenges experienced by patients living with SCD that are commonly discussed and those that are often overlooked.
- Discuss the sources of resilience for patients living with SCD.
- Explore how the principles of palliative care can address physical and emotional pain experienced by patients and their family members
- Identify ways that resilience can be cultivated in patients living with SCD.
Introduction and De-brief Plenary
- What new insights did you gain from the Plenary on decision making?
- How might you apply the decision making tool to your clinical practice?
- What lingering questions do you have?
Film: Navigating the Hard Times
This film is also available in French, Dutch, Spanish, and Portuguese here.
Reflections and Discussions
- What are your initial responses to this film? What surprised you?
- What did you notice about your feelings, body sensations, thoughts,? What do these tell you about yourself?
Ask participants to give short answers to the following question and write down the ideas on a flipchart.
- What is the meaning of suffering?
There are many definitions of suffering. According to Reich, suffering is “an anguish experienced as a threat to our composure, our integrity, the fulfillment of our intentions, and more deeply as a frustration to the concrete meaning that we have found in our personal experience.” (Reich, 1989). Eric Cassell describes suffering, “the state of severe distress associated with events that threaten the intactness of person,” as happening to the whole person who ascribes to it his or her personal meaning (Cassell, 1991, p. 33).
- How do these definitions align with your thoughts about suffering?
- What is the meaning of suffering to the patients? Families? Clinicians?
- What are the sources of suffering? Use the flipchart below to record answers from the group.
- Which of these sources of suffering are typically talked about and acknowledged to patients? Parents/family? Professional caregivers?
Many people distinguish pain from the meaning people assign to the experience. Alleviating suffering involves a whole person approach. First to treat the physical pain and then to address the sources of suffering that reflect the “story around the pain.”
- Which of these (or other) sources of suffering may often be overlooked or unexamined for patients, parents, and siblings?
- How might discrimination contribute to physical and emotional pain?
- How do we help alleviate suffering?
- What does it mean to ‘fight’ pain? (Acceptance vs. surrender vs. fighting)
- How do you respond to Miracle’s comment about her day to day coping with a pain level of 6?
- What does it suggest about her ability to deal with her situation?
- What is the role of mental health and behavioral therapies in treating suffering?
- What does resilience mean to you?
There are many definitions of resilience; generally it refers to an individual’s capacity to be able to flow with the ups and downs of life. It involves an individual’s ability to manifest adaptive positive coping strategies that are matched to the situation while minimizing stress or distress (Mallack, 1998).
- What are the qualities of resilience?
- What examples of resilience do you see in the film?
List a few for patients, family members, and clinicians on the flip-chart using the following table as a guide:
- How can we support a person’s inner resilience?
- What is the role of mental health services in supporting the resilience of patients with SCD?
- What is the role of spirituality in supporting patient’s resilience?
- What are some other ways we could support the patient’s resilience?
- What role can palliative care play in addressing physical and psychological pain?
Application to Self and Home Institution
- Regarding what we have discussed during this group, what change would you like to see/make at your home institution?
Agenda items: Refer participants to their agenda, noting there is a 15 minute break following this small group session before their second Team Meeting. Also remind them of the evening activity on Caregiver Well-being.