SIBS Bereavement Series – Kids

Telling My Story

Advice for Other Siblings

Connection

Relationships-Parents

Relationships-Friends

Celebrating & Remembering

SIBS Bereavement Series – Youth

Telling My Story

Emotions and Coping

Relationships-Parents

Relationships-School & Boundaries

Triggers

Grief Changes Over Time

Celebrating & Remembering

What is pediatric hospice palliative care?

What is pediatric hospice palliative care?

Pediatric Hospice Palliative Care

Grief Support and Services

Perinatal Hospice and Grief Program

Pediatric hospice palliative care is about living.

While the wording of the definitions may vary, healthcare experts in the field are clear about one thing— pediatric hospice palliative care is not about illness, death, and loss. It focuses on living one’s best life, sharing experiences as a family that bring joy and making memories in the context of a life-limiting illness. It’s multifaceted care, in hospice, hospital, at home and in the community, that enriches the quality of life for children – no matter how short.

Care that meets unique family needs.

Pediatric hospice palliative care recognizes that no two children and no two families are alike, so care is tailored to meet the specialized needs of each child and their family. Compassionate pediatric hospice palliative care provides comfort, focuses on quality of life, identifies opportunities to make memories, and to strengthen family connections. and beyond, it helps children and their families achieve their goals and wishes and live their lives to the fullest. Care includes specialized perinatal services and grief support.

Roger Neilson Children’s Hospice echoes the Canadian Hospice Palliative Care Association’s, definition of pediatric hospice palliative care as “an active, holistic approach to care, which focuses on relieving the physical, social, psychological, and spiritual suffering experienced by children and families who face a life-threatening condition, and helping them fulfill their physical, psychological, social, and spiritual goals.”

 

 

 

 

 

What makes pediatric hospice palliative different from adult hospice care ?

  • Infants children and youth facing a progressive life limiting illness, along with their families, have unique needs that require expertise, resources and approaches that are different from adult hospice care. They benefit from individualized palliative care, which may include cure, prolonging life, or providing comfort measures. The needs of the pediatric population are highly influenced by aspects of their illness and circumstances, including: physical, psychological, emotional and spiritual development and growth; clinical presentation; illness trajectory; and, ethical and contextual issues and the impact on their family and community.
  • Pediatric hospice palliative care offers a continuum of care focused on the child and their family throughout the stages of living, death, and grieving. This continuum of care is made possible through a team approach and access to many different healthcare professionals.
  • It recognizes that opportunities to enrich lives happen everywhere. Care can occur wherever it is desired by the child and family, providing opportunities for a highly individualized range of experiences that enhance the quality of life, make memorable moments, and build a legacy with friends, family and caregivers.
  • As care may continue for many years throughout a child’s life, continuity of relationships with caregivers provides comfort and security. Pediatric hospice palliative care seeks to ensure families never feel alone.

Simply put, pediatric hospice palliative care is more than preparing for death and loss. It is about providing care, support, and opportunities for children facing life-limiting illnesses and the families who love them to make the most of every moment.


Transitioning to Adult Care

Transitioning to Adult Care

Consistent, Collaborative and Compassionate care should know no age limits. 

As children age out of the embrace of Roger Neilson Children’s Hospice and into the realm of adult healthcare, preparing for a transition from a child and family-centric approach to a patient-centred one is essential, especially for new young adults with chronic medical conditions. 

Roger Neilson Children’s Hospice recently hosted a workshop on this topic, which included professionals with knowledge and expertise relevant to youth and families transitioning to adult care. 

This enlightening presentation explores the transition to adult care (https://youtu.be/EI9DGOd7TbI). We hope it will help illuminate a path toward a future where consistent and collaborative care knows no age limits. 

We are committed to ensuring that youth with a progressive life-limiting condition and their families are prepared and empowered for their new reality of becoming adults.

Sunflower podcast

Sunflowers symbolize hope and joy.

The Sunflower podcast explores approaches to palliative care for children.

The Sunflower podcast explores new global pediatric palliative care issues and engages professionals with questions about caring for children with serious illnesses and their families through a global lens. It brings curiosity, humour, and reflection to the world of palliative care. It examines its joys and challenges, including topics related to education, advocacy, self-care, and leadership from around the world.

 

Listen now

The podcast is aimed at all healthcare providers worldwide interested in exploring care for seriously ill children and palliative care for children. Past topics have included “Finding Beauty and Joy in Children’s Palliative Care “and “Breath in and out: Bringing Respirology and Palliative Care Together.”

The Sunflower is hosted by Dr. Spandana Rayala (Two Worlds Cancer Collaboration), Dr. Megan Doherty (Children’s Hospital of Eastern Ontario and Roger Neilson Children’s Hospice, Ottawa, Canada), Dr. Natasha Datoo and Camara Van Breemen (Canuck Place Children’s Hospice, Vancouver, Canada).

You can listen to past and future episodes of The Sunflower podcasts here or on Spotify

@twoworldscancer

@drmegandoherty

@spandanarayala