Jacinta Douglas1,2, Christine Bigby1. 1. Living with Disability Research Centre, La Trobe University, Melbourne, Australia. 2. Summer Foundation, Melbourne, Australia.
Abstract
Purpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains. Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway. Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals.Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.Implications for RehabilitationSupport for decision-making is essential to maximise the participation of people with cognitive disability in decisions about their lives.Research has shown that support for decision making is a complex multifaceted process comprising multiple overlapping steps, delivered through individually tailored strategies and informed by practice principles.The La Trobe practice framework provides an evidence-based guide for engaging in effective support for decision-making with people with cognitive disability.
Purpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains. Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway. Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals.Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.Implications for RehabilitationSupport for decision-making is essential to maximise the participation of people with cognitive disability in decisions about their lives.Research has shown that support for decision making is a complex multifaceted process comprising multiple overlapping steps, delivered through individually tailored strategies and informed by practice principles.The La Trobe practice framework provides an evidence-based guide for engaging in effective support for decision-making with people with cognitive disability.
Entities:
Keywords:
Support for decision-making; acquired brain injury; cognitive disabilities; intellectual disability; practice framework; supported decision making