In 2006-2007, the Burwood Academy of Independent Living (BAIL), in collaboration with the Canterbury District Health Board (CDHB) and the Rehabilitation Teaching and Research Unit (RTRU) University of Otago, Wellington collaborated to contribute to a study designed to better understand the consequences of living with spinal cord injury in NZ. This was part of the World Health Organisation’s directive to develop the International Classification of Function, Health and Disability (ICF) Core Sets for SCI. Of interest to us at BAIL is that two large parts of the study design was entirely about the lived experience, not just what clinicians think/believe/observe. At the time Anne Sinnott was appointed as the Western Pacific Coordinator of the study, which recruited participants from Burwood Spinal Unit, (BSU), Auckland Spinal Rehabilitation Unit (ASRU), and the Victoria Spinal Service in Melbourne. Basically the design required the close examination of examined bio-psycho-social factors to determine those factors most significant in NZ and Melbourne.
What was helpful at the time was that this study looked at the personal experiences of newly injured people, many of whom were still in one or other spinal unit as well as people living with SCI in a wide variety of societal settings – many of whom were many years post injury. The methods were both quantitative and qualitative – this was well before such combination of methods was encouraged. For example, focus groups allowed for in-depth discussions between participants in both spinal unit and community settings. Individuals were asked five questions about their perception of the problems across a variety of life domains. All discussions were taped and sentence by sentence analysis was undertaken via an ICF based software programme. Other participants completed a variety of questionnaires with an individual researcher allowing for more number-based analyses.
The evaluation of the voice of the NZ and Melbourne participants based on the ICF taxonomy was laborious and at times frustrating. Naturally the results from the three sites contributed to the Swiss based study, which given they were paying, was necessary and important. However, more significantly the NZ results challenged many assumptions held within our spinal units and a far greater understanding of the SCI demographics in our communities. Thanks to the contribution made by those individuals, three key factors were highlighted by a reasonably rigorous research process:
1. From the newly injured participants the results suggested a clear mismatch between the concerns and worries of newly injured participants versus those purported by health professionals. Specifically the NZ data provided compelling evidence that the rehabilitation focus at the time was not meeting the needs of newly injured participants in terms of pain, sleep, optimism and relationships.
2. From the chronic (with a longer term injury) participants the results suggested there were subtle demographic differences compared with the rest of the world. The NZ SCI profile suggested individuals are slightly older, twice as likely to be unemployed (yet have more years of education), and twice as likely to be living on their own – thereby required external support.
3. While analysis through the Independent Living (IL) lens was not explicitly part of the study design, the fundamental IL principles of choice and control were under-emphasised in our settings.
This work, along with other research projects, contributed to the development of BSU’s transitional rehabilitation (TR) programme.