JMIR Publications

ABSTRACT

Background:

Providing integrated care is essential in paediatric rehabilitation, given the multiplicity of settings and professions involved in children’s rehabilitation care pathways and the need for a strong partnership between children with disabilities, families and professionals to improve children’s participation. E-health tools, such as shared patient health portals, can support integrated care.

Objective:

This study aims to explore the perspectives of paediatric rehabilitation professionals on the usefulness and desired features of a shared portal to support integrated care for children with disabilities, as well as the perceived challenges to its use.

Methods:

An interpretive descriptive qualitative study was conducted. Data were collected through 32 semi-structured, online interviews with healthcare (n=15), education (n=11), recreation (n=5) and social professionals (n=1) involved in the rehabilitation pathways of children with motor and cognitive disabilities in France. Recruitment involved maximum variation and snowball sampling. Interview verbatims were analysed using NVivo14 by an interdisciplinary team of researchers, including parents and clinicians, following a thematic analysis approach. Data saturation was reached.

Results:

Three main themes were identified: 1) opportunities for a shared health portal, 2) proposals for features, and 3) sources of ambivalence towards portal use, along with strategies to overcome these concerns. Professionals perceived a shared patient portal as an opportunity to 1) facilitate collaboration between healthcare, education, recreation and community services to create a rehabilitation continuum, 2) facilitate exchanges about the child's participation in different living environments to develop skills for everyday life, and 3) facilitate continuous engagement of children and families throughout the rehabilitation process. To fulfil these opportunities, the participants suggested features to be integrated into a shared patient portal: a calendar shared across sectors and providers, shared photos, videos, reports of the child functioning in different living environments and activities, and the ability to share progress with children and families to maintain their engagement in rehabilitation. Participants expressed ambivalence about the use of the tool, regarding confidentiality and transparency, especially with non-medical professionals; children’s engagement and increased screen time; parental control of a shared patient portal; and the time spent using the portal. Despite these barriers, they showed strong interest in the portal.

Conclusions:

This study highlighted the opportunities perceived by professionals for a shared patient portal to foster a true partnership between children, parents, and professionals involved in the care pathways of children with disabilities. Concrete features were proposed to enhance stakeholder engagement and participation. Despite some challenges, the professionals perceived significant benefits of a shared patient portal in paediatric rehabilitation, reflecting an intention to use it in practice. These results will inform the development of digital tools designed to improve the quality of rehabilitation care offered to children. Clinical Trial: The procedures were registered at ClinicalTrials.gov under the identifier NCT06570148.