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.