eHealth as an aid for facilitating and supporting self-management in families with long-term childhood illness – development, evaluation and implementation in clinical practice

Since 2018, research has been conducted within the eChildHealth research program, funded by Forte until 2025, with the aim to develop safe and satisfactory child-centered care with the support of e-health. The research follows the Medical Research Council's framework for developing, evaluating, and implementing complex interventions in healthcare.

The overall goals are:

1) to push the boundaries of current knowledge about clinical efficacy and cost-effectiveness for e-health as a tool for promoting and assisting self-care for children with long-term illness and their families.
2) to build a sustainable multidisciplinary environment for the development, evaluation, and implementation of e-health in support of self-care for children and their families.

The research program includes several clinical studies in pediatric care with the aim of strengthening and developing safe and satisfactory child-centered care with the support of e-health. But also, studies of implementation, technical development, health economics, and cultural actors. Subprojects are conducted in Sweden, Denmark, and Ethiopia. The focus is on complex, long-term, and costly challenges in pediatric care.

In Sweden, this applies, for example, to surgery for children born with malformations of the gastrointestinal tract and/or with heart defects, children born prematurely, and children with cancer. The technology being studied is an application in an e-tablet where parents and staff communicate via chat, photo, text message, film, and repeated reports about the child's condition. The goal is to give the child and the family security and support at home and reduce the family's need for travel and return visits to the hospital. In Denmark, it is being investigated how a mobile application can be used as an aid for the early identification of cerebral palsy in children and how e-health can be used as a tool for intravenous treatment at home for children and young people with acute or long-term illness. Ethiopia is investigating whether text message reminders are an effective strategy to increase adherence to treatment for young people living with HIV.

The end-users, (the parents, or the children/adolescents, as well as the professional caregivers) participate throughout the research process. The project includes three phases: development, evaluation, and implementation. Both validated and reliable questionnaires, as well as qualitative interviews, are used for data collection. The research is conducted by a multidisciplinary research team in health sciences, medicine, economics, technology, and social sciences, which work together on common research issues. Computer technology expertise analyses the conditions for using IT in healthcare; health economic evaluations are made in parallel with the clinical studies; and the challenges that arise as a result of e-health changing the relationships between children, families, and professional actors, are studied in the basis of cultural perspectives and implementation research.