Needs and Preferences of Parents and Healthcare Professionals in Development of an eHealth Intervention in Pediatric Home Infusion Therapy: Qualitative Study (Preprint)

Abstract

With the provision of home infusion therapy in children with acute or long-term illness on the rise, eHealth technologies have the potential to bridge the transition between hospital and home. However, eHealth interventions intended to support parents in managing home infusion therapy are sparse. Gaining insight into the needs and experiences of parents and healthcare professionals is crucial to developing feasible and sustainable eHealth interventions that target their needs. This study describes the first phase of a research study designed to develop and evaluate an eHealth intervention to support home infusion therapy.

The aim was to identify the experiences and needs of parents and healthcare professionals during home infusion therapy and their preferences for digital features in a future eHealth intervention.

A qualitative study was conducted at three pediatric departments at a university hospital in Denmark. We individually interviewed 17 parents of 14 children who had received home infusion therapy with a portable pump. In addition, five focus groups were conducted with 15 healthcare professionals. We conducted a qualitative content analysis of the data, which we collected from February to July 2020.

We identified six sub-themes that we merged into three main themes: Increasing safe self-management at home; adapting information and responsibility to individual changing needs; and requesting digital features to ensure skill level, safety, and quality of care. The analysis showed that parents and healthcare professionals had corresponding needs and preferences, e.g., a need for a high sense of safety and easier ways to communicate during home infusion therapy. Both groups emphasized the need for digital features to improve problem-solving and communication as a supplement to existing care to promote a safe environment, self-management, and quality of care. A vital issue was that an eHealth intervention should be aligned with the workflow of healthcare professionals and comply with regulations regarding confidentiality in communication and data sharing.

Our study highlights the needs that parents and healthcare professionals have for increased safety and easier access to communication when receiving and providing home infusion therapy. The findings will be used to help develop an eHealth intervention supporting home infusion therapy tailored to individual needs.