It is known that information regarding the quality of life of a patient is central to pediatric palliative care. This information allows professionals to adapt the care and support provided to children and their families. Previous studies have documented the major areas to be investigated in order to assess the quality of life, although it is not yet known what operational criteria or piece of information should be used in the context of pediatric palliative care. The present study aims to: 1) Identify signs of quality of life and evaluation methods currently used by professionals to assess the quality of life of children with cancer receiving palliative care. 2) Collect recommendations from professionals to improve the evaluation of quality of life in this context. We selected a qualitative research design and applied an inductive thematic content analysis to the verbal material. Participants included 20 members of the Department of Hematology-Oncology at CHU Sainte-Justine from various professions (e.g. physicians, nurses, psychosocial staff) who had cared for at least one child with cancer receiving palliative care in the last year. Professionals did not have access to pre-established criteria or to a defined procedure to assess the quality of life of children they followed in the context of PPC. They reported basing their assessment on the child’s non-verbal cues, relational availability and elements of his/her environment. These cues are typically collected through observation, interpretation and by asking the child, his/her parents, and other members of the care. To improve the assessment of quality of life professionals recommended optimizing interdisciplinary communication, involving the child and the family in the evaluation process, increasing training to palliative care in hematology/oncology, and developing formalized measurement tools. The formulation of explicit criteria to assess the quality of life in this context, along with detailed recommendations provided by professionals, support the development of systematic measurement strategy. Such a strategy would contribute to the development of common care goals and further facilitate communication between professionals and with the family.

Background: Attention deficit/hyperactivity disorder (ADHD) is often associated with frontal executive impairment in children. Oppositional defiant disorder (ODD) and anxiety disorders (AD) frequently accompany ADHD, but the impact of these comorbid disorders on cognition remains elusive. The five-point test (FPT), a design fluency task, has been shown to be sensitive to neurological damage, specifically to frontal lobe lesions in patients with brain injuries. The purpose of this study was to compare the performances of neurotypical children with that of children with ADHD, ADHD-ODD, and ADHD-AD on the FPT in order to examine whether these groups could be distinguished from one another based on their cognitive profile. Methods: A total of 111 children aged 8 to 11 years old participated in the study. Six measures from the FPT were used to characterize their performance. Results: Statistically significant differences between groups were observed for five of the six FPT measures. Essentially, children with ADHD-ODD made more repeated designs than the three other groups (control p > 0.001, ADHD p = 0.008, ADHD-AD p = 0.008), while children with ADHD-AD produced fewer total and correct designs than the control and ADHD groups (p = 0.009). Conclusions: This suggests that comorbidities have an additive impact on the cognitive profile of children with ADHD. Design fluency may be a sensitive measure for capturing the subtle cognitive deficits that are likely to be involved in these disorders.

Cadre de recherche : Le trouble de déficit de l’attention/hyperactivité (TDAH) est un trouble neurodéveloppemental fréquent qui débute dans l’enfance et souvent associé à des défis multiples rencontrés par les parents concernés, notamment un stress parental plus élevé ayant des impacts négatifs en particulier sur la relation parent-enfant et sur la discipline exercée. Objectif : L’objectif de cette étude qualitative est de décrire l’expérience de stress parental selon la perspective de parents québécois d’un enfant âgé de 7 à 12 ans ayant reçu un diagnostic de trouble de déficit de l’attention/hyperactivité (TDAH). Méthodologie : Dix parents ont participé virtuellement à une entrevue individuelle semi-structurée et ont répondu à un questionnaire sociodémographique et à l’Indice de stress parental (ISP-4), confirmant que les parents participant à l’étude présentent un niveau moyen de stress parental très élevé. Résultats : L’analyse thématique des verbatims des entrevues a permis de dégager quatre grands thèmes : des journées éprouvantes, des préoccupations constantes, un encadrement exigeant et des stratégies personnalisées de gestion du stress. Conclusion : Cette étude a permis de mieux comprendre l’expérience de stress parental chez des parents québécois ayant un enfant avec un TDAH et les stratégies personnelles de gestion du stress parental utilisées par ceux-ci. L’expérience des parents québécois s’apparente à celle d’autres réalités socioculturelles. Les résultats soulignent également l’importance d’apporter un soutien aux parents et de s’attarder précisément sur le stress parental vécu, et non seulement sur la prise en charge des enfants ayant un TDAH. Contribution: Cet article contribue à une meilleure connaissance du vécu de stress parental chez les parents d’enfant ayant un TDAH. Cette connaissance vise ultimement à soutenir la mise en place d’interventions afin de soutenir les parents dans la gestion de leur stress parental.