5th Maruzza International Congress
5th Maruzza International Congress

Pre-Congress Workshops

In response to popular demand, four pre-congress workshops on different themes of significant interest have been scheduled.  The workshops, lead by eminent International paediatric palliative care experts will run simultaneously on Wednesday the 25th October 2021 from 8.30 to 16.30.

Please note that pre-conference workshops can only be booked online congress registration page in connection with the registration for the congress.

Participation in the pre-congress workshops will be limited to a minimum of 30 and a maximum of 80 participants, places will be allocated on a first come first-served basis.

Registration for the pre-congress workshops closes on 10th October 2021.

Fees for Participants include:

  • Attendance in the selected workshop
  • Refreshments and lunch
Pre-congress workshop topics DurationCourse DirectorsCost until 30th May 2021Cost from 31st May 2021
Anticipation and Accompaniment in Perinatal Palliative Care 8hrsBrian S. Carter€ 140€ 190
Supporting families in distress or in crisis8hrsJan Aldridge€ 140€ 190
Symptom management in non-oncological children8hrsJulie Hauer€ 140€ 190
Spirituality in PPC8hrsChristina Puchalski€ 140€ 190

IT’S NOT POSSIBLE TO CHANGE PRE-CONGRESS WORKSHOP ON THE DAY OF THE CONGRESS

Title: Anticipation and Accompaniment in Perinatal Palliative Care 
Date: 25th October 2021
Duration: 1-day (08.30 -16.30)
Coordinator: Brian S. Carter
Co presenters: Alexandra Mancini, Elvira Parravicini
Min Capacity: 30 pers.
 Max Capacity: 80 pers.
Description:

Title: Supporting families in distress or in crisis
Date: 25th October 2021
Duration: 1-day (08.30 -16.30)
Coordinator: Jan Aldridge
Co presenters:
Min Capacity: 30 pers.
 Max Capacity: 80 pers.
Description: When children are not included in conversations about their serious or terminal condition it is usually done with good intent. However there is growing evidence that sensitive, age and experience appropriate information is helpful both for the child and their family. This workshop will explore some of the challenges of communication for families and health professionals when a child is seriously ill. Through discussion, group work and sharing the knowledge of the leaders and participants, it will explore the development of skills in communication with the children themselves and ways in which families can be supported to have conversations with their children.  It will also address the challenges of resolving conflicting feelings between the family and health professionals about communication with the child about what is happening to them.  As the role of a strong evidence base, alongside learning from clinical experience, is increasingly recognised in paediatric palliative care, a sub-group within this workshop may have the opportunity of one session to address issues around working with children, young people and parents as research partners at this significant time of challenge.

Title: Symptom management in non-oncological children
Date: 25th October 2021
Duration: 1-day (08.30 -16.30)
Coordinator: Julie Hauer
Co presenters: Mercedes Bernadá
Min Capacity: 30 pers.
 Max Capacity: 80 pers.
Description: This session will focus on symptoms in children with diseases and injury of the central nervous system. Such children live with substantial symptom burden, with a significant impact on quality of life and health outcomes of the child and family. This session will focus on chronic symptoms generated by the altered nervous system, resulting in neuro-pain, autonomic dysfunction, dystonia and status dystonicus, altered sleep, and feeding intolerance. A general frame work will be discussed, given that such problems are without diagnostic tests to identify or distinguish one source from another, and are problems without cure. A screening process and assessment tool, pending publication, will be presented. Such a tool is needed given that many of these problems lack diagnostic criteria. Parents also face many worries throughout this process; language strategies to assist with needed support will be discussed. Management strategies will focus on the greater challenges: medication titration, length of a medication trial, when to add a 2nd or 3rd medication, breakthrough care plans, number of medication trials, decisions about medical feeds and fluids, parental worries, as examples. This session will be case based, facilitate participant discussion, and provide participants with handouts that assist with daily patient care.

Title: Spirituality in PPC
Date: 25th October 2021
Duration: 1-day (08.30 -16.30)
Coordinator: Christina Puchalski
Co presenters: Richard Bauer, Joan Marston
Min Capacity: 30 pers.
 Max Capacity: 80 pers.
Description:

In response to popular demand, four pre-congress workshops on different themes of significant interest have been scheduled.  The workshops, lead by eminent International paediatric palliative care experts will run simultaneously on Wednesday the 25th October 2021 from 8.30 to 16.30.

Please note that pre-conference workshops can only be booked online congress registration page in connection with the registration for the congress.

Participation in the pre-congress workshops will be limited to a minimum of 30 and a maximum of 80 participants, places will be allocated on a first come first-served basis.

Registration for the pre-congress workshops closes on 10th October 2021.

Fees for Participants include:

  • Attendance in the selected workshop
  • Refreshments and lunch
Pre-congress workshop topics DurationCourse DirectorsCost until 30th May 2021Cost from 31st May 2021
Anticipation and Accompaniment in Perinatal Palliative Care 8hrsBrian S. Carter€ 140€ 190
Supporting families in distress or in crisis8hrsJan Aldridge€ 140€ 190
Symptom management in non-oncological children8hrsJulie Hauer€ 140€ 190
Spirituality in PPC8hrsChristina Puchalski€ 140€ 190

IT’S NOT POSSIBLE TO CHANGE PRE-CONGRESS WORKSHOP ON THE DAY OF THE CONGRESS

Title: Anticipation and Accompaniment in Perinatal Palliative Care 
Date: 25th October 2021
Duration: 1-day (08.30 -16.30)
Coordinator: Brian S. Carter
Co presenters: Alexandra Mancini, Elvira Parravicini
Min Capacity: 30 pers.
 Max Capacity: 80 pers.
Description:

Title: Supporting families in distress or in crisis
Date: 25th October 2021
Duration: 1-day (08.30 -16.30)
Coordinator: Jan Aldridge
Co presenters:
Min Capacity: 30 pers.
 Max Capacity: 80 pers.
Description: When children are not included in conversations about their serious or terminal condition it is usually done with good intent. However there is growing evidence that sensitive, age and experience appropriate information is helpful both for the child and their family. This workshop will explore some of the challenges of communication for families and health professionals when a child is seriously ill. Through discussion, group work and sharing the knowledge of the leaders and participants, it will explore the development of skills in communication with the children themselves and ways in which families can be supported to have conversations with their children.  It will also address the challenges of resolving conflicting feelings between the family and health professionals about communication with the child about what is happening to them.  As the role of a strong evidence base, alongside learning from clinical experience, is increasingly recognised in paediatric palliative care, a sub-group within this workshop may have the opportunity of one session to address issues around working with children, young people and parents as research partners at this significant time of challenge.

Title: Symptom management in non-oncological children
Date: 25th October 2021
Duration: 1-day (08.30 -16.30)
Coordinator: Julie Hauer
Co presenters: Mercedes Bernadá
Min Capacity: 30 pers.
 Max Capacity: 80 pers.
Description: This session will focus on symptoms in children with diseases and injury of the central nervous system. Such children live with substantial symptom burden, with a significant impact on quality of life and health outcomes of the child and family. This session will focus on chronic symptoms generated by the altered nervous system, resulting in neuro-pain, autonomic dysfunction, dystonia and status dystonicus, altered sleep, and feeding intolerance. A general frame work will be discussed, given that such problems are without diagnostic tests to identify or distinguish one source from another, and are problems without cure. A screening process and assessment tool, pending publication, will be presented. Such a tool is needed given that many of these problems lack diagnostic criteria. Parents also face many worries throughout this process; language strategies to assist with needed support will be discussed. Management strategies will focus on the greater challenges: medication titration, length of a medication trial, when to add a 2nd or 3rd medication, breakthrough care plans, number of medication trials, decisions about medical feeds and fluids, parental worries, as examples. This session will be case based, facilitate participant discussion, and provide participants with handouts that assist with daily patient care.

Title: Spirituality in PPC
Date: 25th October 2021
Duration: 1-day (08.30 -16.30)
Coordinator: Christina Puchalski
Co presenters: Richard Bauer, Joan Marston
Min Capacity: 30 pers.
 Max Capacity: 80 pers.
Description: