Module Directory

This page can be used as a table of contents to access all modules for both curricula.

Duchenne Muscular Dystrophy Modules

Duchenne Muscular Dystrophy: Facilitator’s Guide

Module 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 Duchenne Muscular Dystrophy (DMD).

Module 2Overview of Duchenne Muscular Dystrophy – Use this module to gain a broad understanding of DMD before beginning the Vision of Hope: Duchenne Muscular Dystrophy curriculum.

Module 3 – Many Faces of Hope – This module explores the different types of hope experienced by patients, physicians, and family members. Participants will brainstorm creative methods of encouraging hope in their practice.

Module 4Paradox of Promise – Use this short module to supplement the “Many Faces of Hope” module. Paradox of Promise explores the effects of the promise of a cure alongside various types of hope experienced by all those affected by DMD.

Module 5 – Listen to Me – “Listen to Me” examines the important complexities of communication among patients, doctors, and family members affected by DMD, including the role of adolescent decision-making, the limitations of informed consent, and the boundaries of parental and clinician authority.

Module 6 – Unexamined Distress – Use this module to investigate the forms of distress encountered in patients with DMD – both those that are frequently addressed and those that are often ignored.

Module 7Ethical Challenges in Duchenne Muscular Dystrophy – This module explores the ethical dilemmas faced by professionals from different disciplines who care for children and adolescents with DMD.

Module 8Transitions – “Transitions” provides a glimpse into the difficulties presented by the complex transition between childhood and adulthood for adolescents with DMD.

Module 9 – An Uncertain Future – This module raises the challenges associated with acknowledging and discussing death with children and their families, one of the toughest responsibilities of clinicians caring for adolescents with DMD.

Module 10 – 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, and offers a tool for assisting in this process.

Module 11 – On the Edge – This module explores the lived experience of a life-threatening event for an adolescent, his family and his clinicians. The challenges of uncertainty, disease progression and perspective-taking during and after a 7-week stay in the pediatric intensive care unit are highlighted.

Module 12Moral 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 DMD 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.

Resources and References

Sickle Cell Disease Modules

Sickle Cell Disease: Facilitator’s Guide

Module 1 – Introduction to Pediatric Palliative Care – This section is intended to be used as an introduction to the training and could 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).

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

Module 3One 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.

Module 4Respect 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.

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

Module 6Trust – “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.

Module 7Ethical 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.

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

Module 9Navigating 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.

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

Module 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.

Resources and References

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