Approche famille-partenaire : perspective des gestionnaires, des intervenants et des parents d’enfants ayant un trouble neurodéveloppemental

Context: Neurodevelopmental disorders (NDD) are increasingly being addressed as a chronic health problematic. In the context of an increased financially pressured health system, to cope with challenges associated with this chronicity, the current user-partner movement is considered a promising and humanistic health action path. For young people with NDD, recognizing the central role of parents leads to follow this movement by bringing forward the family-partner approach (FPA). Poorly documented, this approach is in continuity with the literature that associates parent-health professional collaboration to positive spin-offs, buy that also puts forward hurdles in real implementation. An under optimized partnership can generate several undesirable consequences for the child, the family, health professionals and ultimately performance of the whole healthcare system. Goals: This study aims to explore the perspective of parents, health professionals and managers with regard to the FPA in order to favor family involvement in the care continuum and services offered to children with a NDD condition. More specifically, the targeted goals are (1) to characterize similarities and differences between the perceptions of parents, health professionals and managers, (2) to describe factors easing or limiting the involvement of families as partners and (3) to identify intervention paths which would contribute to improve or consolidate this partnership. Methodology; An exploratory descriptive research, with qualitative methodology, was conducted towards managers (n=4), health professionals (n=7), community organizations representatives (n=3) and parents of children having a NDD (n=8). The data gathering was held in the Quebec City area through a focus group for parents and through individual interviews for the other groups of key players. A thematic analysis of deductive-inductive content, following three themes relative to the study specific goals have been chosen to process the data. Results: The results confirm a common wish from all the key players to tend towards a partnership approach, despite the actual situation which demonstrates the numerous challenges to enact a real implementation in practice. This study suggests that family involvement as partners is influenced by a multiplicity of factors linked to the child and the family, the health professionals, the relationship, the organization as well as the society. Hence, this research reveals a diversity of intervention paths possibly contributing to improve the partnership in actualizing itself at different levels: level of practice, level of organizational design and governance and level of policy development. An analysis process of the results computed from the present study allows the proposal of an integrated model which aims to guide a realistic implementation of the parent-health professional partnership: the model Family-partner approach toward children having neurodevelopmental disorders (M-FPA-NDD). In order to act on the social symptoms associated with NDD, this model highlights, among other things, the importance of establishing a fair relationship between the family and health professionals and the need to consider a shared responsibility between the players acting at different levels.  Conclusion: To achieve optimal health results toward children having a NDD, the actualization of the M-FPA-NDD must absolutely pass by a collective thinking based on a common understanding of its structuring elements and proposed favorable conditions

Keyphrases: collaboration, Partnership, collaboration, family partnership, family-centred, child disorders, professional-family relationships