Abstract
Background: Patient-family centred approach with interprofessional and cross sectoral collaboration is highly recommended in paediatric rehabilitation, to improve children's participation in daily life activities. However, children with disabilities receive fragmented rehabilitation care, due to the diversity of professions and sectors (care, education, community) involved, and it's difficult to maintain the children and families’ engagement throughout this long care pathway. Digital health technologies (DHTs) such as mobile applications are a promising way to promote integrated care. The aim of this study was to explore stakeholders’ perspectives about DHTs to facilitate integrated paediatric rehabilitation pathways, to inform the development a mobile app.
Approach: The methodology was design with patients, parents and clinicians as co-researchers, who participated to defining the research question, co-designing the interview guide, recruiting participants on social networks, analysing the verbatims and reviewing the articles. Qualitative descriptive interpretative study design. 74 participants took part in semi-structured interviews and focus groups (25 youth with motor and cognitive disabilities from 12 to 25, 16 parents, 33 professionals involved in paediatric rehabilitation pathway (health care rehabilitation professionals, educators, community professionals as leisure), recruited with purposeful sampling. Open questions were about perceived opportunities, needs and challenges of DHTs, and ideas for features to be integrated. A thematic analysis was carried out on Nvivo14, following Braun & Clarke steps. Saturation was obtained for each group of participants.
Results: Key opportunities to facilitate integrated care in paediatric rehabilitation were: 1) facilitating a continuum between clinic, school and community with a shared app, the possibility of sharing observations of the child in various environments and to codetermine rehabilitation goals 2) improving engagement of children and families through a more transparent access to health data, giving them control over who they share their data with, and 3) facilitating skill acquisition and transfer into everyday life, through self-rehabilitation exercises to do at home, and the sharing of videos, photos, documents, etc. Professionals expressed many concerns: confidentiality regarding the integration of education and community professionals in the app, children's screen time, parents' digital literacy and dehumanizing relationship with patients, interoperability with other information and communication technologies. Parents were concerned about professionals' involvement and their attitudes towards interprofessional and family collaboration. Youth wanted this app to be open to other people in their circle, universally accessible and that they could give access to trusted professionals, because they were more concerned about professionals' ableism and professionals/parents' adultism.
Implications: These results provide new knowledge about the core components for integrated paediatric rehabilitation care, with stakeholders' concrete needs. This user-centred design is essential considering the limited adoption of e-health in clinical practice. Next steps will be to align stakeholders needs with focus group. Then a health app shared by children with disabilities, caregivers and professionals will be developed, to offer more holistic rehabilitation services to children and their families in France, enhancing the participation in all aspects of the child’s life. Involvement of stakeholders at all stages of the project will facilitate its implementation in clinical settings and the dissemination of knowledge.