Assessment of needs, psychological impact and quality of life in families of patients with locked-in syndrome

Authors: Zulay Lugo; Fréderic Pellas; Veronique Blandin; Steven Laureys; Olivia Gosseries. —

Objective. Family needs of patients with acquired brain injuries have been studied for about three decades. In this study, we assessed the needs, the quality of life and the psychological state of relatives of patients with locked-in syndrome (LIS).

Design: A survey was carried out using the family needs’ questionnaire (FNQ).

Subjects and methods: Thirty relatives of patients with LIS fully completed the FNQ.

Results: The most important need reported by families corresponded to the need for medical information. The highest percentage of satisfaction (66%) was also observed for this need. Among the needs for information, specifically, the most important for LIS’ relatives was to know that the patient’s needs and wishes were respected by the professional staff, which were fulfilled in 93% of the sample. The need for emotional support was the least important and had the lowest percentage of satisfaction (55%). The number of met/unmet needs correlated with the quality of life of the families. Most of the relatives reported anxiety feelings and depressive thoughts.

Conclusions: Receiving accurate medical information is the most important need for family of patients with LIS and their quality of life is correlated with the fulfilment of their needs.

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