This project will conduct a thorough investigation of aspects relevant for the design of digital solutions to support communication for children, families and healthcare personnel in homebased palliative care for children.
Our focus is fourfold:
- to understand the care- and communication needs in children and their families
- to understand what healthcare personnel needs in order to provide relevant care and communication complying with their professional role and competence
- to identify and discuss possible tailoring of existing digital solutions
- to discuss aspects identified through an assessment of the ethical, social and legal aspects (ELSA) of health technology in homebased PPC.
Participants
More about the project
Our project will result in a knowledge-based specification for a health technology solution that is safe and in line with the needs it is supposed to 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 hospital admissions.
Background
Some children in Norway live with life-limiting and/or life-threatening diseases and require palliative care. Palliative care for children is about providing support to the child and the family in their daily life to enhance their quality of life.
Some may require palliative care over an extended period, possibly into adulthood, while others may undergo a shorter treatment course where the child either passes away or recovers. The children and families often depend on close monitoring by healthcare professionals, and health technology can help facilitate more time at home.
However, there is little research on the needs of the children, families and healthcare professionals that could be met by health technology to support and maintain clinical requirements, safety, and quality.
There are already many digital solutions for patient follow-up at home, but we lack basic knowledge of how they can function in palliative care for children. The absence of thorough evaluations beforehand increases the risk of adopting health technology too early.
