1. Objectifs

Intentions :
This «study sought to elicit an in-depth understanding of parents’ experiences caring for CMC [Children with medical complexity] in the PICU [pediatric intensive care unit].» (p. 2)

2. Méthode

Échantillon/Matériau :
L’échantillon est composé de 17 parents et de 14 enfants recrutés au sein d’une unité de soins intensifs pédiatriques d’un institut universitaire. La région de provenance des participants n’est pas mentionnée dans l’article, mais la recherche a été conduite par une équipe de Montréal.

Instruments :
Guide d’entretien semi-directif

Type de traitement des données :
Analyse de contenu

3. Résumé

«Parents developed expert knowledge regarding their child’s health care needs by providing continuous, complex care at home. Most understood their knowledge as complementary to that of health care professionals, however integrating diverse contributions to care could be challenging. Collaboration took time and constant work to establish. Negotiating parent involvement in their child’s care and establishing caregiver partnerships was not always supported. Parents valued PICU staff who took the time to get to know their child and family well. Ultimately, parents in this study considered partnerships with PICU staff to be central to the provision of excellent care for their children. Parents [also] expressed a desire to be recognized as such and involved in care, including care planning and technical procedures. While some parents reported successfully negotiating their desired level of involvement, others felt excluded or, alternatively, that they were relied upon to provide bedside care, thus limiting their ability to take much-needed time for respite. Parents needed PICU staff to be attentive to their desired level of involvement in care on an ongoing basis. Their needs for support and readiness to contribute to their child’s care could change over the course of their child’s hospitalization, and they needed staff to be ready to engage in ongoing negotiation and to react flexibly to their changing needs.» (p. 7-8)