The importance of supporting evolving capacity: The need to support young people with cognitive impairment in out-of-home-care.

• There are many young people with cognitive impairment in out of home care. • Young people make significant decisions when leaving out of home care. • Young people in out of home care may not have opportunities to develop capacity to make decisions. • We talked to young people with cognitive impairment, their parents, and to other stakeholders about how they supported evolving capacity to make decisions. • The study shows close supports can enable evolving capacity, while broader systems can be barriers to evolving capacity. Young people living in out-of-home care (OOHC) are required to make significant decisions when transitioning from care. Without measures to support participation in the planning process, young people, particularly those with cognitive impairment, are at risk of having decisions made for them 'in their best interests' by others and, without capacity to identify will and preference, are at increased risk of being placed under a guardianship order for decision-making. Little is known about (1) how young people with cognitive impairment are supported to develop autonomy in decision-making over time, and (2) what systems and services support the evolving capacity of young people with cognitive impairment in OOHC to participate in transition planning. We undertook a qualitative study to address this knowledge gap and contribute to practice. We interviewed 17 Young people with cognitive impairment (15–30 years old), 13 parents of young people with cognitive impairment, and 22 other stakeholders supporting young people with cognitive impairment, and analysed results thematically using a human rights framework and Bronfenbrenner's ecological systems theory. We found support for evolving capacity is an active process provided by those close to the young person – family, paid support workers and friends. These supports may not be available to all young people in OOHC. We also found broader systems appear to be barriers to rather than enablers of evolving capacity. This study highlights the opportunity to provide greater support for evolving capacity around young people in OOHC across different systems to support their transition from OOHC and transition to adulthood. [ABSTRACT FROM AUTHOR]