This module discusses the difficulties presented by the complex transition between pediatric and adult care for adolescents with Sickle Cell Disease.
- Health system challenges, including lack of continuity
- Challenges in transition from pediatric to adult care models
- Adolescent empowerment
- Identify common challenges for adolescents living with SCD as they transition to adult care
- Explore the relationship of stress, grief and uncertainty on the transition process
- Discuss ways to support adolescents in the transition from pediatric to adult care
Introduction and Debrief Plenary
Art Activity and Transition Plenary
- (If applicable) What stood out for you regarding the Art Activity?
- What stood out for you regarding the Transition plenary?
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 thoughts, feelings, body sensations? What do these tell you about yourself?
- What are your responses to the transition we saw in the film?
- Is it realistic? Sustainable?
- What were the emotional responses of patients in the film when they need to transition?
- What are the emotional responses of patients when they need to transition at your institution?
- What are the emotional responses of family members?
- What does your institute do to transition patients from pediatric to adult care?
- At what age are they transferred?
- Do you transfer all patients at that age or only certain patients?Facilitator Note 2
- What are the differences between your pediatric and adult care clinics?
- As a clinician, what is your perspective on transitions?
- Are your feelings positive or do you have reservations? (Prompts:
- Letting go, grieving loses, like “losing a family member” (Jeff)
- Attachment to children “Just like being a parent” (Kim))
- Do you think your attitude towards transition affects patient perspectives of transition?
- What is the relationship of stress, grief and uncertainty on the transition process for patients, families and clinicians?
- What are some ways these issues could be addressed more effectively?
Consider drawing the following (or similar) on flip-chart to help guide discussion:
- How can we change from making transition seem impossible, to making it seem normal and demystify it?
- What about anticipatory guidance for the process?
- When to begin making the transition?
- What system issues contribute to the challenges experienced by adolescents transitioning from pediatric to adult care?
- How do we change the way the system is viewed while also acknowledging the systems (e.g. billing, lack of adult clinicians) gets in the way?
- What role can palliative care play in transitioning child to adult care?
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?
- Discuss how perceptions of how transition could go better at your institution (in terms of changing the structure of care, etc.) and how you can facilitate adolescents make a successful transition.