Sickle Cell Disease Modules

1 – Introduction to Pediatric Palliative Care – This section is intended as an overall introduction to the training and can be used in conjunction with any of the modules. It provides a brief overview of pediatric palliative care and how it relates to Sickle Cell Disease (SCD).

2 – Overview of Sickle Cell Disease – Use this module to gain a broad understanding of SCD before beginning the Vision of Hope: Sickle Cell Disease curriculum.

3 – One Day at a Time – This module encourages participants to think about the variations of hope that may be experienced by patients, doctors, and families living with SCD. It also focuses on quality of life and the uncertainty of living with day-to-day living with the disease.

4 – Respect and Patient Centeredness – “Respect and Patient-Centeredness” is a short module that focuses on integrating respect and patient-centeredness as core elements of the doctor-patient relationship.

5 – They Don’t Believe Me – This module highlights the importance of utilizing effective listening and communication with patients with SCD.

6 – Trust – “Trust” focuses on the trust between patients, doctors, and family members. Participants will identify various challenges to maintain trust and explore how to use palliative care to encourage building trust.

7 – Ethical Landscape/Decision-Making Tool – This module surfaces the complexity of sharing the moral burden of decision making with patients and parents in the palliative care setting.

8 – Integration of Palliative Care – This module explores ways to apply and integrate palliative care into the care of adolescents with SCD.

9 – Navigating the Hard Times – “Navigating the Hard Times” focuses on identification of sources of pain, suffering, and resilience in patients, caregivers, and family members affected by SCD.

10 – Transitions – This module discusses the difficulties presented by the complex transition between pediatric and adult care for adolescents with SCD.

11 – Moral Angst: The Heartache of Healers – This module is designed to explore the internal responses (moral, emotional and spiritual) of clinicians who care for children with SCD as they confront intense suffering and moral angst. Often unrecognized, these responses have a profound impact on the clinicians themselves, their interactions with patients, families and their colleagues.