Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability

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 evidencebased guide to support for decision-making. ä IMPLICATIONS FOR REHABILITATION Support 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.

The impact of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) on Victorian guardianship practice

“…Watson [11] found that supporter responsiveness to a person's will and preference was most likely when supporters had a positive view of the decision-making capacity of those they supported. This emphasis on the importance of positive assumptions of decision-making and communicative capacity for people with significant cognitive impairment is increasingly reinforced within the research literature [30,45]. This body of literature not only emphasises the importance of a universal assumption of legal capacity but also raises important questions, and offers solutions, relating to how best to support all citizens to exercise legal capacity on an equal basis through supported decision-making approaches [30,32,42].…”

“…Conflict amongst supporters has been found to increase the complexities of decision-making support for people with cognitive disability outside of a legislative context [26,28,45]. In the presence of conflict, the preferences of the person being supported, tend to fade into the background, overshadowed by the conflict between those supporting them.…”

Stigma research in the field of intellectual disabilities: a scoping review on the perspective of care providers

“…Given the inevitable power difference that does exist in the relationship between care provider and service user (client), it seems important that care providers are willing to share their power (e.g. by shared-decision making) and to listen carefully to clients and their families/ network (Douglas andBigby 2018, Pijnenborg et al 2016). This may reduce the demonstrated risk on overprotection and limited involvement in decision-making for people with ID.…”

Occupational therapy and decision‐making capacity assessment: A survey of practice in Ireland

“…Wider involvement of stakeholders beyond HCPs was highlighted in our study, with a large majority of the therapists reporting involvement of caregivers/family in DMC assessment, using conversations and interviews. The inclusion of caregivers/family who know the person and their strengths, needs and values, is especially important in supporting decision‐making for those with cognitive disabilities (Douglas & Bigby, ). This may explain the high level of informant involvement reported in our study, given that many therapists worked with clients with dementia and cognitive dysfunction.…”

“…The need for evidence‐based practice frameworks and related training materials that are relevant in diverse formal and informal contexts has been identified internationally (Douglas & Bigby, ). Respondents in our study highlighted the need for further training in DMC assessment, and the need for practice guidelines to provide a framework for occupational therapists and other HCPs to guide practice in this area, which is consistent with research findings from other jurisdictions and other HCPs (Aldhous et al, ; Seyfried et al, ).…”