Background The purpose of this article is to describe an interventional project in a University Hospital. It explains the adjustments that were made to provide good care for patients with intellectual and developmental disabilities in an acute care setting in Western Switzerland. It is not the exposition of the results of a formalised research or study. Rather, this article relates the success story of a project initiated by a small group of passionate people on their free time, that eventually entered in the 2020 strategic planning of the largest hospital of Switzerland. Switzerland does not have a national policy regarding health needs for patients with intellectual and developmental disabilities. Health care professionals are not trained to identify and meet the specific health needs of this population and little is taught about intellectual and developmental disabilities during undergraduate studies. Method The Disability Project was conducted between 2012 and 2017 in Geneva University Hospital, as follows: Firstly, over sixty working group sessions took place to identify the specific health needs of people with intellectual and developmental disabilities, to identify the barriers to providing equity of care and to prioritize reasonable adjustments. The four following barriers emerged from these meetings: Lack of awareness of healthcare professionals on specific health issues for patients with intellectual and developmental disabilities, which resulted in a poor healthcare coordination and reduced quality of care. Communication and information transmission issues between hospital staff, families and supported residential accommodations. Lack of training or insufficient training of healthcare professionals and hospital staff on intellectual and developmental disabilities. Inaccessibility of the hospital facilities and buildings for patients with disabilities Secondly, arising from these priorities, interventions were developed. Findings The interventions were eventually applied throughout the hospital. Recommendations and reasonable adjustments were made to provide accessibility and equity of care for patients with intellectual and developmental disabilities. Conclusion The Disability Project has achieved many reasonable adjustments in an acute care setting to provide good care and satisfaction for this population and their families.
Face à l’allongement de l’espérance de vie dans nos sociétés actuelles, les instances socio-éducatives et de santé s’interrogent sur le devenir des personnes en situation de handicap. En Suisse, le vieillissement conjoint des parents et de leurs enfants en situation de handicap avec une déficience intellectuelle préoccupe ces différentes instances. Qu’elles vivent en internat ou en externat, le vieillissement de ces personnes confronte les parents, les professionnels, les institutions, le système socio-sanitaire à la prise en compte de nouvelles dimensions dans l’accompagnement, notamment celle du suivi de santé. C’est dans ce contexte que nous questionnons l’engagement des parents dans le suivi de santé de leur fils/fille et de ce qu’il implique pour chacun des acteurs du réseau d’accompagnement.
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