eHealth as an Aid for Facilitating and Supporting Self-Management in Families with Long-Term Childhood Illness; Development, Evaluation, and Implementation in Clinical Practice – A Research Programme

Abstract

Introduction  eHealth, defined by WHO as: “the transfer of health resources and healthcare by electronic means” are expected to increase communication between healthcare providers and patients and increase accessibility and patient participation in healthcare. The aim of this research programme is to: 1) develop a sustainable multidisciplinary environment for advancing, evaluating, and implementing models of eHealth to promote self-management for children and their families, and 2) increase the present knowledge of clinical and economic cost-effectiveness of eHealth as an aid for supporting self-management in families with long-term childhood illness. 

Method  The research is performed in Sweden, Denmark, and Ethiopia and organized in three research domains: eHealth to enable and promote self-management in advanced paediatric care, eHealth for early diagnosis and treatment in paediatric care, and Co-Creation of multidisciplinary knowledge for the translation of eHealth in practice. The research follows a framework for developing and evaluating complex interventions in healthcare. Through participatory design family members and care providers participate throughout the research process. Quantitative and qualitative data as well as health economics are collected in six clinical areas. Five general areas are run transversal. 

Results and conclusion  Evidence-based best practices in developing and evaluating eHealth in paediatric healthcare will be suggested. As implementation is part of the programme, cost-effective eHealth directly benefiting families and healthcare services will be guaranteed. 

Trial registration  NCT04150120