Hendaye

Researchers are evaluating the effects of auricular vagal neuromodulation therapy (aVNT) on emotional, behavioral, and cognitive challenges faced by adults with Prader-Willi Syndrome (PWS), a rare neurodevelopmental disorder. This study aims to explore improvements in emotion regulation, executive functions, hyperphagia (excessive eating), depression, and quality of life. The trial is a multicenter, randomized controlled single-blind exploratory study involving both patients and their caregivers. Participants will be randomly assigned to receive either active aVNT or sham stimulation using the Parasym ae device. The device applies painless electrical microcurrents to the left ear's auricular branch of the vagus nerve for four hours daily, seven days a week, over a nine-month period. Patients can split the daily stimulation into two sessions and adjust the intensity based on comfort. The sham group uses the same device under similar conditions but stimulates a different ear area without vagus nerve fibers. Throughout the study, participants and caregivers will be assessed every two weeks for emotional control and regulation. Secondary outcomes including executive functions, hyperphagia, depression, and quality of life will be evaluated at baseline, three, six, and nine months. The study monitors the persistence of effects after stimulation to understand the therapy's impact fully. This trial may provide valuable insights into new treatments for behavioral and emotional difficulties in PWS and other related conditions.

This research aims to explore the life experiences, needs, and expectations of family caregivers, specifically parents and siblings, of aging persons with polyhandicap aged 35 years and older. Polyhandicap is a complex chronic condition involving profound intellectual disability and serious motor impairments, leading to extreme limitations in autonomy and communication. With improved care increasing life expectancy, this study seeks to better understand the challenges faced by families as their relatives with polyhandicap age. The study uses a combined quantitative and qualitative approach involving questionnaires and interviews with parents and siblings. Data from previous evaluations of parents are already available, while sibling data will be collected through phone and mail. The research includes analysis of experiences, social views, needs, expectations, and family decision-making processes regarding support for aging individuals with polyhandicap. Participants will provide information through questionnaires and interviews lasting about 30 minutes for booklet completion and 60 minutes for interviews. The study relies on an interdisciplinary approach and a strong network of specialized centers, associations, and university teams. The main measure is the experiences of parents of aging persons with polyhandicap, and the findings aim to improve support for families during the aging transition.