Digital Innovation in Children’s Palliative Care

Global Treehouse is delighted to share a new rapid scan of the research around technology in children's palliative care. 

Only about 10% of the 21 million children globally in need of specialist palliative care are currently able to receive this critical support. Our rapid literature scan, Digital Innovation in Children’s Palliative Care, set out to explore how emerging and proven technologies can enhance both the access to and the quality of this vital area of healthcare. It explores how emerging and proven technologies could improve access to and the quality of children’s palliative care, highlighting priority areas for investment, testing and scale. The aims are: 

• Characterise current uses of digital solutions and technologies in children’s palliative care environments and adjacent fields such as adult palliative care, chronic disease and disability care.

• Assess potentially relevant emerging innovations in children’s palliative care and adjacent fields.

• Summarise information regarding attitudes towards included technologies and barriers to their uptake, prompting future consideration for successful implementation and sustained use.

Principal Findings

 A wide range of digital tools and technologies were identified with the potential to improve access to and the quality of children’s palliative care. These spanned four main thematic areas:

• Symptom tracking and treatment

• Information management and care coordination

• Enhancing accessibility and telemedicine

• Social connection and empowered participation

Symptom tracking and treatment

In the scan, it showed that family caregivers and healthcare staff respond well to mobile applications that support pain monitoring and management, provided the apps balance functionality with care responsibilities. Individuals value having flexible input options and some applications allow users to share health metrics directly with healthcare staff. 

Recreation-based digital interventions fit effectively into holistic models of care. Serious games can help manage children’s anxiety and often include educational elements. Virtual reality has frequently appeared in the literature as a basis for symptom-management interventions aimed at both children and caregivers, creating an immediate opportunity to identify solutions suitable for scaling by examining their potential for long-term, regular use. Studies of virtual reality (VR) technologies also highlighted cultural and language barriers that may limit the uptake of digital tools. This creates a future opportunity for research to assess how cultural factors shape users’ attitudes towards a given technology, enabling targeted implementation and reduced user barriers.

Information management and care coordination

Digital clinical decision support tools and family-facing platforms can enhance collaborative care planning, ensuring teams can access relevant health information and meaningfully account for it. Studies of these tools, along with research on users' attitudes towards online patient portals, emphasise the need for a balanced approach to caregiver involvement that respects a child’s privacy and autonomy. Designers should format information appropriately for the intended user base and convey it sensitively to minimise confusion and distress. Digital solutions can support smoother care transitions; however, broader infrastructural and healthcare system factors continue to determine their overall success.

Enhancing accessibility and telemedicine

Telemedicine setups can extend the reach of specialist information and reduce the travel burden of in-person appointments. Virtual communication platforms also help maintain continuity in patient–provider relationships during care transitions and they play a particularly valuable role in delivering rural and home-based care.

Assistive technologies promote independence and communication, but professionals’ training and the level of ongoing user support strongly influence uptake. Systemic barriers, such as insurance limitations, can also restrict children’s access to this equipment. Even when government or charity organisations fund the technology, limited personal flexibility can still result in setups that overlook individual needs.

Social connection and empowered participation

Digital tools can facilitate communication and help foster peer connection, caregiver support and community engagement. Given that virtual contact cannot fully replicate the quality or depth of in-person connection, teams must balance the implementation of any online communication platform with the offer of in-person support.

Healthcare staff must consider the impact their support in using these platforms can have on user engagement. Digital legacy-making tools can offer children the opportunity to create media that help them and their families cope with the difficulties associated with life-limiting and life-threatening illness, which can exist as an intentional electronic social media footprint.

Taking the Next Step Together

These findings reveal both the promise and the challenges ahead. While digital tools offer meaningful ways to extend care reach and enhance quality of life for children and families, realising this potential requires intentional effort—from ensuring cultural appropriateness and user-centred design to addressing systemic barriers around training, funding, and infrastructure. We're committed to working alongside healthcare providers, technology developers, families and policymakers to move promising innovations from research into practice. If you're involved in children's palliative care—whether as a clinician, technologist, funder or family advocate—we invite you to explore the full research scan and join the conversation about how we can collectively improve access to this vital care. Together, we can help close the gap for the 90% of children who still lack the support they need.

Acknowledgements 

Thank you to Anna Morris, the primary researcher of this document, for her great commitment to sharing this summary with the field! Global Treehouse also appreciates Dr Eve Namisango and other leaders for their input on the research scan, and Buoy for publishing expertise and support.