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

Study Overview
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Brief Summary
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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

Detailed Description
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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.

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

Conditions
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Parkinson Disease, Deglutition Disorders

Participation Criteria
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Eligibility Criteria
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For patients: Inclusion Criteria: 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 Movement Disorder Society - Unified Parkinson's Disease Rating Scale (MDS-UPDRS) scale or collection in the medical record Person dependent on food (according to MDS-UPDRS - food tasks item, part II, 2.4, need help with all food tasks) Day or traditional hospitalization in the neurology department, including a meal. 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) Exclusion Criteria: 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
Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Assisting (caregiver) / aided (patient with Parkinsonian syndrome) dyad<br>The dyad will be filmed during a meal had during a hospitalization, and an interview with the sick person and his caregiver will be 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 | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Strategies description | 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. | 13 months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Description of the perception of meal time, patient's point of view | Thematic analysis of the perception of meal timing, diet, meal assistance for the sick person. | 13 months | 
| Description of the perception of meal time, helper's point of view | Thematic analysis of the perception of meal timing, diet, meal assistance for the caregiver | 13 months | 
| Description of quality of life related to meal time | Identify factors that contribute to and detract from meal-related quality of life satisfaction. | 13 months | 
| Identification of specific needs for educational programmes | Identify the needs of carers to adapt or place specific educational programmes | 13 months | 
| Description of strategies put in place during meal time | Overview of the strategies put in place to promote a compromise between nutritional, safety and hedonic objectives | 13 months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Dysphagia, Assistance feeding, Parkinson disease, Caregivers, Mealtime