L’expérience à long terme des parents endeuillés en oncologie pédiatrique : une étude rétrospective de 2 à 18 ans après le décès d’un enfant
Long-Term Experience of Bereaved Parents in Pediatric Oncology: a Retrospective Study from 2 to 18 Years after a Child’s Death from
Abstract
Aim: This retrospective and cross-sectional study aims to understand the long-term experience of bereaved parents in pediatric oncology and gender differences in parental bereavement.
Procedure: A multisectional questionnaire co-constructed with clinicians and bereavement specialists was held online in 2018 and 2019. The survey participants were parents whose child had died in the hematology-oncology department of the CHU Sainte-Justine 2 to 18 years before. Specific sections on reactions, changes, and memories were used for descriptive analyses.
Results: Responses from 48 parents were analyzed. The results indicate that mothers tend to modify some of their social activities, while fathers seek to regain their habits. The initially strong reactions of the parents diminish over time without disappearing, more specifically sadness and sleep disturbances. Parents have soothing memories of the interactions and care received from clinical and community workers even several years after the death of their child.
Conclusion: The offer of a long-term community and professional psychosocial support is relevant, as is the adaptation of resources and activities to meet the needs of couples and the individual needs of parents according to gender.
Résumé
Objectifs : Cette étude rétrospective et transversale vise à comprendre l’expérience à long terme des parents endeuillés en oncologie pédiatrique et les différences du deuil parental en fonction du genre.
Matériel et méthodes : Un questionnaire multisectionnel coconstruit avec des cliniciens et intervenants en suivi de deuil a été tenu en ligne en 2018 et 2019. Les participants au sondage étaient des parents dont l’enfant était décédé au service d’hématologie-oncologie du CHU Sainte-Justine 2 à 18 ans auparavant. Des sections spécifiques sur les réactions, les changements et les souvenirs ont fait l’objet d’analyses descriptives.
Résultats : Les réponses de 48 parents ont été analysées. Les résultats indiquent que les mères ont tendance à modifier certaines de leurs activités sociales, alors que les pères cherchent plutôt à retrouver leurs habitudes. Les réactions initialement fortes des parents s’atténuent au fil du temps sans disparaître, en particulier la tristesse et les troubles du sommeil. Les parents ont des souvenirs apaisants des interactions et des soins reçus des intervenants en milieux clinique et communautaire même plusieurs années après le décès de leur enfant.
Conclusion : L’offre de soutien psychosocial communautaire et professionnel à long terme est pertinente, de même que l’adaptation des ressources et des activités pour répondre aux besoins des couples et aux besoins individuels des parents en fonction du genre.
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