In France, around 3 million children are carriers of a chronic disease. These children require individualized, highly specialized rehabilitation care supported by interdisciplinary teams, often over many years. Rehabilitation is defined as "a set of interventions designed to optimize the functioning and reduce the disability of people with health problems as they interact with their environment". The main objective of rehabilitation is thus to promote the child's social participation in his or her daily life, whether at home, school or leisure. To achieve this goal, the partnership between all the professionals involved with the child, the child and his or her family is essential. The exchange of information between these stakeholders must be optimal throughout the child's care. However, there are many gaps in access to and sharing of information around the child, due to the multiplicity of stakeholders involved, the constant changes (care structures, school, etc.) and the wide variety of contexts (school, home, private practice, leisure, hospital). E-health or digital health presents multiple opportunities to promote access to information, improve monitoring of children, involve the family in care and reduce the mental burden associated with information exchanges, which are mainly handled by the family. The Deneo KID project, led by W.Inn, Brest University Hospital's innovation center, and carried out in partnership with the Deneo company, aims to meet these challenges. It aims to develop a digital solution for exchanging information between the various players involved in the child's care. This study is therefore directly in line with the Deneo KID project.
Indeed, it is recognized in the literature that taking into account the needs and expectations of users (families, professionals, children) from the earliest design phases of a digital solution is essential to foster its usability, acceptability and future appropriation by its users. But this is not enough, and the literature shows a high percentage of failure in digital health innovation projects. For a solution to be adopted by its users, it is also essential to take into account the obstacles and brakes to the implementation of this type of solution at different levels (professionals, decision-makers). Indeed, authors have highlighted organizational factors likely to hinder or support the adoption of this type of solution, such as organizational support, or the persuasive strategies and techniques implemented by the organization to encourage the adoption of a solution by the professionals on a team.
Considering these elements, the investigators have chosen to include not only people concerned by the use of the solution, but also people empowered to lead change, i.e. decision-makers in settings welcoming children with chronic health conditions. Decision-makers is defined as those involved in decision-making concerning the implementation of digital solutions in the various structures working for the health of children with chronic health conditions. They may be health managers or senior health managers in hospitals and rehabilitation centers, directors or heads of department in medico-social establishments, or association leaders. This will enable us to work with decision-makers to define appropriate implementation strategies to encourage adoption of the solution in care environments, and thus guarantee the success of the Deneo KID project.
A qualitative focus group study of families of children with chronic illnesses was already carried out in 2022, supported by the Ildys Foundation (PITChREHAB study). Its aim was to explore the needs and expectations of families of children with chronic illnesses with regard to digital solutions to promote the exchange of information related to their child's rehabilitation. This study highlighted multiple opportunities for families, as well as essential functionalities to be included in the future Deneo KID solution from the families' point of view.
The ProChildRehab study is the second stage in the development of the Deneo KID solution. It focuses on the needs of child-facing professionals and decision-makers for a digital solution designed to facilitate the exchange of information about children with disabilities.
The ProChildRehab study is the second stage in the development of the Deneo KID solution. It focuses on the needs of professionals working with children and decision-makers for a digital solution designed to facilitate the exchange of information about children with disabilities.
The ProChildRehab study was approved by the CHU de Brest territory ethics committee on 14/03/2024. Since then, interviews have been carried out with 18 health, education and leisure professionals working with children with disabilities (psychologist, PRM doctor, specialist teacher, AESH, Handisport leader, etc.) and 6 decision-makers (health executive, SESSAD director, Handisport manager, etc.). Further interviews are planned, as data saturation has not yet been reached (there is some redundancy in the answers, but new ideas are still being contributed). Analysis of these interviews is underway (an iterative process in qualitative research, with analysis concurrent with data collection). Initial results suggest that the views of patients concerned by this future digital solution should be taken into account. Indeed, there is no consensus on several points, such as the psychological information that could be shared by the child and his parents with professionals via the platform (e.g. the child's morale), the fact of sharing photos of daily life and therefore quite intimate (e.g. photos of the house), the usefulness of proposing self-rehabilitation exercises to patients via the platform (rehabilitation overload for children vs. ensuring continuity of services), or the perception of what the child's "reality" is (e.g. professionals who ask for more information on the child's reality to better support him/her vs. other professionals who say that this information is confidential). The investigators would therefore like to explore with young people the acceptability of certain features, particularly in terms of the information that is acceptable for them to exchange about their health via this platform. The aim is to question people who could be concerned by the sharing of information through this future solution, i.e. young people with disabilities who are living or have lived through the care of a child with a disability.
These initial data obtained and the need to go out and interview patients corroborate with the literature on the subject, which highlights the gaps between patients' and clinicians' perceptions of their needs and interests with regard to e-health and advocates an "alignment of concerns" on both sides.
