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FRIMEDBIO-Fri prosj.st. med.,helse,biol

Gathering evidence for evidence-based health technology to support communication in homebased pediatric palliative care – CHIP homeTec

Alternative title: CHIP homeTec: Helseteknologi i hjemmebasert palliasjon til barn – en evidensbasert tilnærming

Awarded: NOK 8.0 mill.

Some children in Norway live with a life-limiting and/or life-threatening illness and need palliative care. Palliative care for children focus on supporting the child and family in everyday life to maintain quality of life. Palliative care might be required for a long period and into adulthood, while others will have a shorter course where the child dies or recovers. The children and families are often dependent on close follow-up from health personnel, and health technology can help facilitate more time at home. However, there is little research on the needs the children and families and health personnel have that can be met by health technology. Many solutions already exits, but we lack basic knowledge of how they can support home-based palliative care. In the CHIP homeTec project, we focus on the child and the family, and are currently conducting a survey among parents about their experiences related to home-based palliative care for children and health technology. This work will be followed up in 2024 with interviews of both the children themselves and their parents to discuss what place health technology can and should have. Furthermore, we have summarized previous research on the perspectives of healthcare professionals on home-based palliative care for children, work that will be published in 2024. We have also interviewed healthcare professionals who care for children in at home to discuss what place healthcare technology can and should have, and we have an open survey aimed at healthcare personnel to gain a breadth of experiences healthcare personnel have with health technology in pediatric palliation. In 2024, we will summarize experiences with previous technology and assess whether existing solutions can be adapted for use in home-based pediatric palliative care. Last, but not least, we shall explore the ethical, legal and social framework within which health technology in home-based child palliation must function. A lack of thorough assessments in advance increases the risk of adopting health technology too early. Our project will result in a knowledge-based specification for a health technology solution that is safe and in line with the needs it must meet in home-based palliative care for children, which we hope can contribute to a digital development that can promote quality of life and reduce hospitalizations.

The World Health Organization (WHO) state that «Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family”. PPC includes children with life-limiting or life-threatening illness, aged 0 to 18 years, regardless of diagnosis, and their family caregivers, often depend of complex, long-term care. An increasing body of evidence supports homebased pediatric palliative care (PPC) to reduce the burden on these children related to hospitalization, unfamiliar environments, altered family dynamics and the lack of participation in kindergarten or school with their friends. Although the possibilities within health technology should facilitate high-quality care and communication, there is a lack of fundamental data in order to develop evidence-based digital solutions for PPC at home. Homebased PPC clearly meets one important goal for the Norwegian authorities - to treat patients in the municipalities rather than in the specialist health care, and the White Paper on palliative care (St. Meld 24) released May 7 2020 particularly raise digital solutions in homebased PPC as a strategic area to develop new services. The crucial component in homebased PPC is the dependency that children and families have on a close and continuous contact with HCP to support in their care needs, requiring efficient strategies and tools for communication. We propose to investigate aspects relevant to draft the evidence-based design requirements for a digital solution, including a thorough identification and consideration of the needs of the population, the ethical and legal implications, existing evidence and experiences. Failing to do so will increase the risk of implementation of immature technology posing a burden on those using it, contributing to an increasing amount of research waste.

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FRIMEDBIO-Fri prosj.st. med.,helse,biol

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