Résultats de recherche

1. Objectifs

Intentions :
«The objectives of this study were […] to identify existing resources available to children with CP [cerebral palsy] in the community, as reported by their municipalities and compare these data with parents’ experiences in finding and accessing existing resources, and […] to identify the relationship between neighborhood socio-economic factors and levels of participation in the community across different neighborhoods.» (p. 430)

2. Méthode

Échantillon/Matériau :
«Participants were recruited from the Quebec CP Registry. The registry is a confidential, nation-wide collection of medical and social information about children with cerebral palsy. Children are registered at the diagnosis of CP, and several variables are collected at different time points. Children with CP born since 1999 were enrolled within six of the 17 administrative health regions of Quebec.» (p. 431) «Participants in the stakeholder consultations included 25 key informant stakeholders, including parents of children and youth with disabilities, representatives of the provincial office for disabilities, leaders of community organizations promoting leisure participation, disability rights and accessibility organizations, rehabilitation professionals (physical and occupational therapists), educators (physical education teachers and special school educators), school principals, urban designers and childhood disability researchers and trainees.» (p. 431)

Instruments :
- Guide d’entretien de groupe
- Questionnaires

Type de traitement des données :
Analyse de contenu
Analyse statistique

3. Résumé

The «results confirm that school-age children with CP have limited participation in the community. There are contextual factors closer to the family, such as lack of information about existing programs and supports, resourcefulness of parents to consult multiple sources of information and availability of family time, and finances that are associated with limited participation. However systemic factors such as social and material deprivation in the region where families live also limit participation opportunities, and that is the case regardless of children’s age and severity of disability. Indeed, most parents cited the lack of information as an important obstacle to their children’s participation in community and leisure activities, and only 18.6% of participants were aware about new resources or leisure programs offered by the community during the three last years, in spite of a large number of programs and policies reported by the municipalities to the provincial disability office.» (p. 441-442)

1. Objectifs

Intentions :
«Les enfants souffrant de troubles neurologiques chroniques vivent de plus en plus jusqu’à l’âge adulte. Nos objectifs étaient de décrire, du point de vue du neurologue au Québec, la pratique courante et les opinions à l’égard de la transition de ces adolescents des soins pédiatriques aux soins adultes, incluant les barrières au processus, si les patients éprouvent un carence en soins durant cette période, et si les neurologues pour adultes ont la formation requise pour prendre soin de ces patients.» (p. 5)

2. Méthode

Échantillon/Matériau :
«Of the 24 studies for which full-text articles were retrieved, 20 were included and four were rejected. [...] 14 were observational QUAN[quantitative] studies, 3 MM[mixed methods] studies, and 3 QUAL[qualitative] studies.» (p. 19)

Type de traitement des données :
Réflexion critique

3. Résumé

«This is the first study to describe the current views and practices of neurologists in transition care. We found that most pediatric neurologists frequently transfer adolescents with traditionally pediatric onset chronic neurological disorders into the adult health care milieu, with many challenges. Patients and family alike are ill-prepared for this change and often unaware how to navigate the adult health care system. Patients may lack information regarding their condition or medications and the self-management skills needed as adults. Pediatric neurologists similarly struggle to identify a suitable and willing adult neurologist or the appropriate multidisciplinary care setting for their patients. Transfer summaries, although usually provided, often lack detailed information according to adult neurologists, with frequent lack of communication both prior and after the transfer of care. Adult neurologists also may lack training or experience in managing this patient population. Many neurologists believe that patients experience a gap in care during this period. Furthermore, late adolescence is a time of uncertainty for the patient, who may experience adverse health and psycho-social consequences if developmentally appropriate and timely guidance is not provided. Perceived parental protectiveness and reluctance to transfer care to an adult setting may not be inappropriate in light of the limitations outlined by neurologists.» (p. 52)