A best practice person-centred approach and decision-making framework - Guidance on the support needs of adults with spinal cord injury

Introduction: All of us need assistance and support with our day-to-day activities and life roles. It may be formal (paid) or informal supports (unpaid) at home, when studying or training, at work or for social and community activities. So often when establishing the support needs of someone with a disability, the approach is service and clinician driven as the �experts�. Objective: The aim of the research project was to adopt a best practice person-centred approach and develop a decision-making framework for the major revision of the 2007 Guidelines for levels of attendant care for people with SCI. Methods: Due to the complexity of the topic, methods involved multiple sources of knowledge sourced through mixed methods including: a systematic literature search of peer-reviewed published and grey literature; on-line stakeholder survey; analysis of data on support workers provided to people with SCI; international frameworks and trends to inform the structure of the guidance; working party of experts (practice and lived experience); stakeholder feedback and peer review of the draft guidance. Results: The guidance provides information, resources and definitions including estimates for the level of support for different levels of spinal cord injury, assistive technology and other practical matters. Resources include screening tools, information sheet for the person and their family. Practice implication: The decision-making framework provides a structured approach. It highlights the range of factors that should be considered in making decisions with the person about their support needs. Conclusions: The 2017 guidance acknowledges that the person with SCI, their family and carers are the expert of their own lives and must be involved in determining their need, as well as have opportunities for choice. Embedded in the decision-making framework is the need to understand, gain information from and about the person, their context and progress.