The development and introduction of multilevel strategies to reduce demand, improve control and support perceptions are warranted, particularly for support staff.

No abstract

This paper reports the first stages of the development of an integrated care model for people with massive sudden change in their lives with special reference to spinal cord injuries. The model aims to be holistic by placing the patient at the centre of the service. In addition to providing medical care for physical injuries, the model emphasises at the outset that regaining a good quality of life postinjury is expected. There is quality of life after change if individuals and their support network are provided with access to quality information and evidence for them to make informed choices. In New Zealand, this has been referred to as “life beyond bugger”!

Purpose -Disabled people who are the end-users (EU) of health services have a poor record of inclusion, yet a major stake in the quality of scientific research that informs the development of health knowledge and interventions. In traditional rehabilitation research it has been the researcher who sets the agenda, including determining the research question, study design and methods, and who controls dissemination of findings. This paper aims to describe the development of an EU research consultation committee and to describe the evaluation protocol used to assess the effectiveness of the committee.Design/methodology/approach -The paper describes the context and development of an EU research consultation committee (the committee) to promote collaboration between researchers and lay-EUs within a research organization in New Zealand. It also describes the qualitative evaluation protocol to be used to assess the effectiveness of the committee over the first 12 months of operation in order to refine its process and procedures.Findings -The paper discusses the issues and challenges involved in achieving collaboration between researchers and EUs in the rehabilitation research space and describes this consultation model as a positive example of making inclusion a reality. Challenges include building research capacity within the EU community and development of real models of collaboration and partnership in rehabilitation research.Originality/value -It is argued that the integrity and relevance of clinical research is enhanced by the involvement of EUs in all aspects of the research process.