Protection, participation and protection through participation: young people with intellectual disabilities and decision making in the family context

Abstract

Although young people with ID may make fewer independent decisions about their lives than typically developing peers, support in decision making can enable both increased protection and independence.

The Nature of Patient- and Family-Centred Care for Young Adults Living with Chronic Disease and their Family Members: A Systematic Review

“…Communication was enhanced when patients felt comfortable with and trusted their practitioners [22353943546267]. The development of trust required time, and was hampered by lack of continuity of practitioners [35445867]. …”

“…Peers who had the same health conditions, and therefore similar expertise, could be valuable emotional supports [2124425862] or mentors [5867], and could act as guides in ways that practitioners could not.…”

“…Patients repeatedly emphasised the importance of practitioners recognising ownership of their bodies [67] and power in their own lives [43]. Information, both medical and service-based, facilitated a sense of control in patients.…”

“…In particular, staff making decisions without involving the patient and family left participants feeling confused and frustrated [2162], disengaged with treatment [5258] and powerless [21]. In addition, by not proactively informing and including patients, practitioners excluded patients from forward planning and decision-making, leading some to believe that none had been done at all [586267]. …”

Mit Kindern und Jugendlichen reden

“…Besondere Bedeutung hat die Einschätzung der Kompetenz und das Recht auf Teilhabe in der Arbeit mit behinderten Kindern und Jugendlichen [27]. Sie ist eng mit ethischen Fragestellungen verknüpft, weshalb man sich auf europäischer Ebene bereits auf verbindliche Richtlinien geeinigt hat [10].…”