Some children are in need of palliative care. Pediatric palliative care is about total care for the child and the family to enable acceptable quality of life and for the child to live a full life despite their life-threatening or life-limiting condition. For some children the illness trajectory lasts for a long period, perhaps into adulthood, while for others the trajectory has a shorter course before they die. These children and families are often dependent on close follow-up by healthcare personnel and health technology makes a close follow-up possible at home. If their interaction is safe enough, the child can be saved from travels to the hospital, avoid hospitalizations and the families can be more together. However, there is little research on the needs of children and families that can be covered by health technology at home. There is also a lack of research in the needs of health personnel that can be covered by health technology so that they can support children and families in ways that meet clinical needs. There are already many digital solutions for following up patients at home, but we lack basic knowledge about how they can work in pediatric palliative care. In our project, we will talk with the children, parents and health personnel to find out what needs they have that can be met with health technology. We will find previous technology and assess whether this can be adapted for use in home-based pediatric palliative care. We will also explore what ethical, legal and social frameworks health technology in home-based pediatric palliative care must be within. Lack of thorough assessments prior to using health technology increases the risk of using technology prematurely - before it is sufficiently mature. Our project will result in a knowledge-based specification for a health technology solution that is safe and in line with the needs in home-based pediatric palliative care. We hope that this can promote quality of life and reduce hospital admissions.
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.