Open Access Categorical Service Allocation and Barriers to Care for Children With Chronic Conditions L'allocation de services par catégorie et les entraves aux soins destinés aux enfants souffrant de maladies chroniques

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Abstract:

Parents raising children with chronic conditions face the challenge of locating and coordinating appropriate community-based resources and services for their child. The purpose of this secondary analysis was to determine parents' view of the mechanisms used to allocate health, education, and social services to children with chronic illness and disability and their caregiving families. A thematic analysis was conducted on data from interviews with 30 mothers and 13 fathers. These parents described 11 mechanisms that were used to determine eligibility and/or to ration services: diagnosis, age, technology dependence, severity, functional ability, guardianship status, geographic location, financial resources, judged parental coping, failure to inform parents about available services, and cyclical funding. These mechanisms were complex, inconsistent, and subject to change. Mechanisms that are integrated, proactive, flexible, and fair are needed to reduce parents' workload and to ensure more equitable allocation of services.

French
Les parents qui élèvent des enfants atteints de maladies chroniques font face au défi de trouver et de coordonner les ressources et les services communautaires appropriés pour leur enfant. Cette analyse secondaire avait pour objectif de déterminer l'opinion des parents sur les mécanismes de prestation des services de santé et d'éducation et des services sociaux aux enfants atteints de maladies et d'incapacité chroniques, ainsi qu'aux familles qui s'occupent d'eux. Une analyse thématique a été effectuée à partir des données d'entrevues réalisées auprès de 30 mères et de 13 pères. Les parents ont décrit 11 mécanismes qui étaient utilisés pour déterminer l'admissibilité aux services ou le rationnement de ces derniers : le diagnostic, l'âge, la dépendance à la technologie, la gravité du problème, la capacité fonctionnelle, le statut de tutelle, l'emplacement géographique, les ressources financières, la capacité d'adaptation estimée des parents, le défaut d'informer les parents des services offerts, ainsi que la cyclicité du financement. Il s'agissait de mécanismes complexes, erratiques et sujets au changement. Des mécanismes intégrés, participatifs, souples et justes sont nécessaires afin de réduire la charge de travail des parents et d'assurer une prestation plus équitable des services.
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  • CJNR is a peer-reviewed, quarterly journal published by the McGill University School of Nursing since 1969. With world-wide circulation, CJNR's primary mandate is to publish original nursing research that develops basic knowledge for the discipline and examines the application of the knowledge in practice. Research related to education and history is also welcomed, as are methodological, theoretical, and review papers that advance nursing science. Letters or commentaries about published articles are encouraged. Learn more.
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