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Besoins en soins psychosociaux et de soutien des personnes atteintes d’un myélome de stade avancé
Abstract
Objectif : La présente étude qualitative vise à comprendre, du point de vue du patient, comment c’est que de vivre avec un myélome multiple au stade avancé, quelles sont les répercussions psychosociales de cette maladie et quels sont les besoins d’aide du patient pour lui permettre de prendre en charge sa maladie et de s’y adapter.
Méthodologie : On a utilisé une méthode descriptive interprétative. Pour chaque participant, on a eu un entretien téléphonique pour l’amener à décrire ses préoccupations et ses problèmes psychosociaux, de même que l’aide qu’il utilise pour faire face à sa maladie. On a analysé les transcriptions des entretiens téléphoniques à l’aide d’une méthode de description interprétative, ce qui a permis de dégager les thèmes communs.
Résultats : L’échantillon à l’étude était composé de douze adultes atteints de myélome au stade avancé, ayant suivi au moins trois traitements, ou étant dépendants de transfusions sanguines. Tous recevaient des soins ambulatoires dans un établissement de Toronto, en Ontario (Canada). Quatre thèmes ont été dégagés : 1) confusion semée par le diagnostic et les options thérapeutiques; 2) difficulté à trouver de l’information pertinente; 3) chronicité des effets secondaires du traitement; 4) importance du soutien social pour faire face à cette maladie qui menace la vie.
Conclusion : Les résultats semblent indiquer que les répercussions psychosociales de la vie avec un myélome multiple au stade avancé dépendent en grande partie de la capacité du malade à comprendre les complexités du diagnostic et à obtenir l’aide nécessaire pour affronter les répercussions physiques et émotionnelles. Des interventions cliniques spécifiquement adaptées pour répondre aux besoins d’information et de soutien de cette population sont nécessaires.
Mots-clés : myélome multiple, description interprétative, qualitatif, psychosocial
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