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临床试验/NCT05898139
NCT05898139已完成不适用

Describe to Better Understand, the Mealtime of People With Parkinson's Disease Dependent on Food Intake

University Hospital, Toulouse1 个研究点 分布在 1 个国家目标入组 22 人开始时间: 2024年2月1日最近更新:
适应症

试验速览

阶段
不适用
状态
已完成
入组人数
22
试验地点
1
主要终点
Strategies description

研究概览

简要总结

The main objective is to describe strategies (verbal, non-verbal (gesture, intonation), and environmental), designed and used by the assisting/aided dyad to feed a dysphagic dependent person by articulating the safe and hedonic dimensions in the context of Parkinson's disease or atypical parkinsonian syndrome during a meal

详细描述

It is described in the literature that being helped for the meal disrupts the pre-oral phase in the visual and proprioceptive afferences received by the sick person to prepare neurologically the other phases of swallowing. In cases of dysphagia, regardless of the cause, the need for food assistance is correlated with higher mortality and an increased risk of pneumonia. Thus, whether at home or in an establishment, human help is often put in place to facilitate the time of the meal, make it more effective (limitation of the duration of the meal, maximization of the nutritional amounts ingested) and safe (prevention of the occurrence of wrong driving). Our hypothesis is that representations about food and aid at meal times, as well as the attitudes of both the helper and the helped, are factors influencing the realization of an adapted human aid when eating a meal in a dependent person. An observation of a meal during a hospitalization and an interview with the sick person and his caregiver are carried out independently. Between 15 days and a month after the first visit, excerpts from the film will be presented and commented by the dyad according to the technique of self-confrontation. A report of the thematic elements identified during the interviews will be proposed for validation by the dyad. This visit can be made during a scheduled appointment in the hospital, by videoconference or at home if the participants do not have access to a videoconference system.

研究设计

研究类型
Observational
观察模型
Other
时间视角
Prospective

入排标准

性别
All
接受健康志愿者

入选标准

  • Patient with typical or atypical Parkinsonian syndrome, collected in the medical record
  • Indication of swallowing disorders or dysphagia, according to item 2.3 chewing and swallowing, part II of the MSD/UPDRS scale or collection in the medical record
  • Person dependent on food (according to MDS/UPDRS - food tasks item, part II, 2.4 ≥ 2, to be help to cut food punctually
  • Having a usual caregiver present for the meal.
  • Affiliated person or beneficiary of a social security scheme.
  • Free, informed, written and signed consent by participant and investigator (no later than the day of inclusion and prior to any review required by the research)

排除标准

  • Individuals whose cognitive state does not allow simple questions to be answered, as judged by the neurologist
  • Person fed exclusively by enteral nutrition.
  • Patient who refuses to be filmed
  • For caregivers:
  • Inclusion Criteria:
  • caregiver of the patient for at least 2 months for the taking of meal
  • Person with French language to answer the questions of the interview
  • Exclusion Criteria:
  • Patient who refuses to be filmed
  • Protected patient: under guardianship, trusteeship or other legal protection, deprived of freedom by judicial or administrative decision

结局指标

主要结局

Strategies description

时间窗: 13 months

Description of the strategies designed and used by the assisting/aided dyad to feed dysphagic patients to perform the hand-to-mouth gesture in the context of Parkinson's disease or atypical parkinsonian syndrome during a meal, using filmed data and semi-directional interviews.

次要结局

  • Description of strategies put in place during meal time(13 months)
  • Identification of specific needs for educational programmes(13 months)
  • Description of the perception of meal time, patient's point of view(13 months)
  • Description of quality of life related to meal time(13 months)
  • Description of the perception of meal time, helper's point of view(13 months)

研究者

申办方类型
Other
责任方
Sponsor

研究点 (1)

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