Description
This module discusses the difficulties presented by the complex transition between pediatric and adult care for adolescents with Sickle Cell Disease.
This module typically takes around 90 minutes to complete. A more detailed module structure can be found in the SCD Facilitator’s Guide.
Themes
- Health system challenges, including lack of continuity
- Challenges in transition from pediatric to adult care models
- Adolescent empowerment
Learning Objectives
- 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?
Film: Transitions
Reflections and Discussions
Individual Reflection
- 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?
Group Discussion
- 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?
- What are the differences between your pediatric and adult care clinics?
- As a clinician, what is your perspective on transitions?
- Letting go, grieving loses, like “losing a family member” (Jeff)
- Attachment to children “Just like being a parent” (Kim)
- Are your feelings positive or do you have reservations? (Prompts:
- 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.