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This June, we present a curated selection of materials centred on paediatric palliative care, proposed by esteemed experts from across the PACED countries, along with their insights on what can be particularly beneficial in these articles, offering professionals working with children and families in need of palliative care practical tools, research, and educational resources. We extend our warmest thanks to the specialists who have devoted their time, experience, and recommendations to this digest.
If you would like to continue any of the topics below in the form of a discussion or webinar, please, feel free to contact us at info@paced.org.uk.
This June, we present a curated selection of materials centred on paediatric palliative care, proposed by esteemed experts from across the PACED countries, along with their insights on what can be particularly beneficial in these articles, offering professionals working with children and families in need of palliative care practical tools, research, and educational resources. We extend our warmest thanks to the specialists who have devoted their time, experience, and recommendations to this digest.
If you would like to continue any of the topics below in the form of a discussion or webinar, please, feel free to contact us at info@paced.org.uk.
Kyrgyzstan
Olga Trukhanova, Head of the First Children`s Hospice
Title: Using Communication Tools to Explore Young Siblings’ Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
Link: https://www.mdpi.com/2227-9067/9/5/641
Description:
Siblings of children receiving palliative care often find themselves in emotionally complex situations. While the seriously ill child becomes the central focus for parents and other family members, brothers and sisters may feel overlooked, unimportant, or excluded from the family system. Without adaptive ways to express and process these experiences, there is a risk of developing anxiety disorders, depression, or difficulties in interpersonal relationships later in life.
The communication tools outlined in the article serve as a bridge, helping siblings feel seen and heard, develop emotional resilience, and reconnect with the family system. Every palliative care psychologist working with siblings should consider incorporating these tools into their practice.
Olga Trukhanova, Head of the First Children`s Hospice
Title: Using Communication Tools to Explore Young Siblings’ Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
Link: https://www.mdpi.com/2227-9067/9/5/641
Description:
Siblings of children receiving palliative care often find themselves in emotionally complex situations. While the seriously ill child becomes the central focus for parents and other family members, brothers and sisters may feel overlooked, unimportant, or excluded from the family system. Without adaptive ways to express and process these experiences, there is a risk of developing anxiety disorders, depression, or difficulties in interpersonal relationships later in life.
The communication tools outlined in the article serve as a bridge, helping siblings feel seen and heard, develop emotional resilience, and reconnect with the family system. Every palliative care psychologist working with siblings should consider incorporating these tools into their practice.
Latvia
Julija Cirule-Galuza, Head of the Liepaja Paediatric Palliative Care Service
1.
Title: Healthcare Personnel’s Perspectives on Health Technology in Home-Based Pediatric Palliative Care: a Qualitative Study
Link: https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-024-01464-w
Description:
This qualitative study explores the experiences of Norwegian healthcare professionals using technology in home-based paediatric palliative care. Participants described tools such as video consultations, digital communication apps, and shared electronic records as beneficial for coordinating care, enhancing access, and saving time. These technologies were particularly valued in rural or remote areas. However, staff also cautioned that overuse might diminish the emotional connection with families. The key message is that technology should support, not replace, compassionate, face-to-face care, which is central to paediatric palliative work.
2.
Title: SaludConectaMX: Lessons Learned from Deploying a Cooperative Mobile Health System for Pediatric Cancer Care in Mexico
Link: https://dl.acm.org/doi/10.1145/3678884.3685922
Description:
The article describes a pilot digital health system implemented in a major paediatric hospital in Mexico City. It integrates a mobile application for families and a web platform for clinicians, facilitating remote symptom tracking, mental health check-ins, and social needs reporting for 274 families of children with cancer.
The system resulted in faster medical responses, reduced unnecessary hospital visits, and provided caregivers with a greater sense of safety and involvement. Hospital staff maintained high data input rates (88–100%), while family engagement was moderate (58–64%). A mixed-method evaluation revealed high clinical potential alongside some usability challenges on the mobile side.
Julija Cirule-Galuza, Head of the Liepaja Paediatric Palliative Care Service
1.
Title: Healthcare Personnel’s Perspectives on Health Technology in Home-Based Pediatric Palliative Care: a Qualitative Study
Link: https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-024-01464-w
Description:
This qualitative study explores the experiences of Norwegian healthcare professionals using technology in home-based paediatric palliative care. Participants described tools such as video consultations, digital communication apps, and shared electronic records as beneficial for coordinating care, enhancing access, and saving time. These technologies were particularly valued in rural or remote areas. However, staff also cautioned that overuse might diminish the emotional connection with families. The key message is that technology should support, not replace, compassionate, face-to-face care, which is central to paediatric palliative work.
2.
Title: SaludConectaMX: Lessons Learned from Deploying a Cooperative Mobile Health System for Pediatric Cancer Care in Mexico
Link: https://dl.acm.org/doi/10.1145/3678884.3685922
Description:
The article describes a pilot digital health system implemented in a major paediatric hospital in Mexico City. It integrates a mobile application for families and a web platform for clinicians, facilitating remote symptom tracking, mental health check-ins, and social needs reporting for 274 families of children with cancer.
The system resulted in faster medical responses, reduced unnecessary hospital visits, and provided caregivers with a greater sense of safety and involvement. Hospital staff maintained high data input rates (88–100%), while family engagement was moderate (58–64%). A mixed-method evaluation revealed high clinical potential alongside some usability challenges on the mobile side.
Uzbekistan
Rustam Norbaev, Head of the Children's Hospice Taskin
Title: Video lecture by Dr. Robert Twycross on Palliative Care
Link (English): https://www.youtube.com/watch?v=HPIPEelfWjk
Link (Russian): https://youtu.be/TBbpJbYMc_I?feature=shared
Description:
I would like to share a lecture by Professor Robert Twycross, one of the founders of modern palliative care. His reflections on suffering, the boundaries between life and death, and the ethics of palliative practice deeply moved me as a physician. What stands out is how universal and relevant his ideas are, both for working with adults and children. Although this lecture may not be rich in clinical detail, it provides a clear and profound explanation of the philosophy behind palliative care. I believe it will be valuable to anyone who works daily with patients facing life-limiting illnesses, regardless of country, system, or professional role.
Rustam Norbaev, Head of the Children's Hospice Taskin
Title: Video lecture by Dr. Robert Twycross on Palliative Care
Link (English): https://www.youtube.com/watch?v=HPIPEelfWjk
Link (Russian): https://youtu.be/TBbpJbYMc_I?feature=shared
Description:
I would like to share a lecture by Professor Robert Twycross, one of the founders of modern palliative care. His reflections on suffering, the boundaries between life and death, and the ethics of palliative practice deeply moved me as a physician. What stands out is how universal and relevant his ideas are, both for working with adults and children. Although this lecture may not be rich in clinical detail, it provides a clear and profound explanation of the philosophy behind palliative care. I believe it will be valuable to anyone who works daily with patients facing life-limiting illnesses, regardless of country, system, or professional role.
Armenia
Anush Sargsyan, Head of the Children's Palliative Care Department at the Hematology Center named after Prof. R.H. Yeolyan
Title: The Role of Physiotherapy in Pediatric Palliative Care: A Systematic Review
Link: https://pmc.ncbi.nlm.nih.gov/articles/PMC8617633/
Description:
Considering this research work, along with my extensive experience in supporting palliative children and their families, I can clearly discern the profound impact such approaches can have. They possess the potential to significantly reduce secondary complications, ease the burden of daily care, and most importantly, enhance the overall quality of life — not only for the child but for their entire family. Findings of this review resonate deeply with the realities I encounter in practice and underscore the importance of integrating physiotherapy into everyday care.
Anush Sargsyan, Head of the Children's Palliative Care Department at the Hematology Center named after Prof. R.H. Yeolyan
Title: The Role of Physiotherapy in Pediatric Palliative Care: A Systematic Review
Link: https://pmc.ncbi.nlm.nih.gov/articles/PMC8617633/
Description:
Considering this research work, along with my extensive experience in supporting palliative children and their families, I can clearly discern the profound impact such approaches can have. They possess the potential to significantly reduce secondary complications, ease the burden of daily care, and most importantly, enhance the overall quality of life — not only for the child but for their entire family. Findings of this review resonate deeply with the realities I encounter in practice and underscore the importance of integrating physiotherapy into everyday care.
DIGEST