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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

DOUGLAS, Jacinta
BIGBY, Christine
November 2018

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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.

Children with disabilities and disaster risk reduction : a review

RONOH, Steve
GAILLARD, JC
MARLOWE, Jay
March 2015

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Children with disabilities are often excluded from disaster risk reduction (DRR) initiatives and, as a result, can experience amplified physical, psychological, and educational vulnerabilities. Research on children with disabilities during disasters is lacking, and their potential value in helping shape inclusive policies in DRR planning has been largely overlooked by both researchers and policymakers. This article highlights the existing research and knowledge gap. The review includes literature from two areas of scholarship in relation to disasters—children, and people with disabilities—and provides a critique of the prevailing medical, economic, and social discourses that conceptualize disability and associated implications for DRR. The article analyzes the different models in which disability has been conceptualized, and the role this has played in the inclusion or exclusion of children with disabilities in DRR activities and in determining access to necessary resources in the face of disaster. Finally, the study explores possible pathways to studying the contribution and involvement of children with disabilities in DRR.

 

International Journal of Disaster Risk Science, Volume 6 Issue 1

Core Concepts of Human Rights and Inclusion of Vulnerable Groups in the Namibian Policy on Orthopaedic Technical Services

VANROOY, G
AMADHILA, E
MANNAN, H
MCVEIGH, J
MACLACHLAN, M
AMIN, M
2012

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Purpose: Despite a highly progressive legislation and clear governmental commitment, living conditions among persons with disabilities in Namibia are systematically lower than among persons without disabilities. This implies that persons with disabilities are denied equal opportunities to participate and contribute to society, and consequently are denied their human rights.

 

Methods: EquiFrame, an innovative policy analysis framework, was used to analyse Namibian Policy on Orthopaedic Technical Services. EquiFrame evaluates the degree of stated commitment of an existing health policy to 21 Core Concepts of human rights and to 12 Vulnerable Groups, guided by the ethos of universal, equitable and accessible health services.

 

Results: A number of Core Concepts of human rights and Vulnerable Groups were found to be absent in the Namibian Policy on Orthopaedic Technical Services, and its Overall Summary Ranking was assessed as Moderate.

 

Conclusion and Implications: The Namibian health sector faces significant challenges in addressing inequities with respect to its policy on Orthopaedic Technical Services. If policy content, or policy ‘on the books’, is not inclusive of vulnerable groups and observant of core concepts of human rights, then health practices are also unlikely to do so. This paper illustrates that EquiFrame can provide the strategic guidance for the reform of Namibian Orthopaedic Technical Services policy, leading to universal and equitable access to healthcare.

The efficacy of community-based rehabilitation programmes for adults with TBI

EVANS, L
BREWIS, C
October 2008

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"The aim of this systematic review was to investigate the factors which influence the efficacy of community-based rehabilitation programmes in improving the quality of life and functional capacity of adults with severe TBI. This was achieved by identifying the different types of interventions used in community settings, and by exploring their outcomes, taking into account differences in methodological design and quality"
International Journal of Therapy and Rehabilitation, Vol 15, No 10

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