Analyse qualitative du vécu d’aidants familiaux de patients atteints de schizophrénie à différents stades d’évolution de la maladie - 06/10/19
Qualitative analysis of the experience of patients with schizophrenia’ family caregivers at different stages of disease progression
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Résumé |
Les aidants familiaux jouent un rôle essentiel dans l’évolution clinique des patients atteints de schizophrénie. Afin d’optimiser leur accompagnement, il est nécessaire d’ajuster le soutien fourni aux aidants en fonction de la phase et de la gravité de la maladie. L’objectif de cette étude était d’explorer le vécu d’aidants familiaux de patients atteints de schizophrénie se situant à différents stades de la maladie, ex. Premier Épisode Psychotique (n=4), Rechute (n=4), et Rémission (n=4), au moyen d’une analyse qualitative portant sur douze entretiens structurés par un guide reprenant les thématiques clés de la littérature, ex. fardeau familial, stigmatisation, gains potentiels liés à la prestation de soin et moyens de faire face à la maladie. Cette analyse a permis de faire émerger les représentations, les émotions et les pratiques caractéristiques de chaque groupe. Les implications cliniques des résultats sont discutées.
Le texte complet de cet article est disponible en PDF.Abstract |
Background |
Caregivers play a crucial role in the clinical evolution of patients with schizophrenia. In order to optimize their support, it is necessary to adjust it according to the phase and severity of the patient's illness. However, little interest has been given in the experience of family caregivers as a function on disease progression.
Objectives |
The objective of this study was to explore the experiences of family caregivers of patients with schizophrenia at different stages of the disease.
Materials and methods |
Twelve family caregivers of schizophrenia patients at different stages of the disease e.g. First Psychotic Episode (n=4), Relapse (n=4), and Remission (n=4) participated in the study. Each caregiver was interviewed for about an hour by a psychologist (the same for all) using an interview guide. This interview guide included key themes highlighted in the literature: family burden, stigma, potential gains in caregiving, and ways to cope with the disease. After retranscription, the research interviews were analyzed with the Alceste method in order to help reading and systematizing the data.
Results |
The qualitative analysis allowed to emerge representations, emotions and practices characteristic of each group. Thus, the interviews with the caregivers of the group First Psychotic Episode were marked by the confrontation with the psychiatric institution. This world was frightening for them: firstly because it was foreign, but also because the representations they associated with schizophrenia were often marked by stigmatization. Hence the shock of the diagnostic announcement, the pain related to the awareness of the disorder of their close relative and the worry about a future that has just darkened. In the Relapse group, caregivers expressed despair and disappointment about the new hospitalization of their relative. Some also expressed anger, often directed against the mental health care system, especially when the subjects didn’t feel heard in their request. Finally, the speech of the caregivers of the Remission group showed a reconstruction process: the family go back to its daily life, not “despite” but “with” the patient's disease and its consequences. A new balance had been established, including better relations with their close relative with schizophrenia. The caregivers’ speech in the latter group also included some key components of the recovery process, such as accepting the mental illness, seeing it positively, perceiving gains related to illness and caregiving, and hope for the future. The clinical implications of these results are discussed. In particular, ideas for improving the caregivers’ support in psychiatric emergency units are proposed.
Conclusions |
The data collected in this study provide valuable insights into the experiences of those who “live with” a close relative with schizophrenia. Moreover, these data indicate that families would also experience a subjective recovery process comparable to that described in the literature on schizophrenia. In addition to its exploratory aspect, the results of this study suggest supportive strategies adapted to the concerns of families at different stages of the evolution of the patient's illness.
Le texte complet de cet article est disponible en PDF.Mots clés : Aidant familial, Ajustement psychique, Représentation, Rétablissement, Schizophrénie, Stigmatisation, Vécu
Keywords : Experience, Family carer, Psychic adjustment, Representation, Recovery, Schizophrenia, Stigma
Plan
Vol 177 - N° 8
P. 740-748 - octobre 2019 Retour au numéroBienvenue sur EM-consulte, la référence des professionnels de santé.
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