University Hospital, Parkinson center
Toulouse, Haute-Garonne, 31059, France
NCT Number: NCT05898139
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
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Observational
Toulouse, Haute-Garonne, 31059, France
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.
Healthy volunteers accepted: No
Only the study team can determine whether someone qualifies for participation.
For patients:
Inclusion criteria
Exclusion criteria
For caregivers:
Inclusion criteria
Exclusion criteria
Time frame: 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.
Time frame: 13 months
Thematic analysis of the perception of meal timing, diet, meal assistance for the sick person.
Time frame: 13 months
Thematic analysis of the perception of meal timing, diet, meal assistance for the caregiver
Time frame: 13 months
Identify factors that contribute to and detract from meal-related quality of life satisfaction.
Time frame: 13 months
Identify the needs of carers to adapt or place specific educational programmes
Time frame: 13 months
Overview of the strategies put in place to promote a compromise between nutritional, safety and hedonic objectives
University Hospital, Toulouse
Other
Acronym: AideAlimPark
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