Longitudinal effects of time since injury and age at injury on outcomes of people with spinal cord injury in Queensland, Australia.

STUDY DESIGN: Longitudinal cohort study. OBJECTIVES: To investigate the longitudinal effects of time since injury and age at injury on outcomes of quality of life, physical function, secondary conditions and participation, in people with traumatic spinal cord injury (SCI). SETTING: Community resident people with spinal cord injury in Queensland, Australia. METHODS: A baseline sample of 270 people with SCI was recruited. Telephone surveys on measures of quality of life (WHOQOL-Bref), secondary conditions (Secondary Conditions Surveillance Instrument, subset), physical functioning (Functional Independence Measure motor subscale) and participation (Community Integration Measure) were conducted each year between 2004 and 2008, and again in 2018. Random-effect within-between models were used to determine the effect of time since injury and age at injury on each outcome variable. Inverse probability-of-censoring weights were used to correct for selection bias. RESULTS: There was an effect of time since injury on secondary conditions, with a one-year change associated with 9% higher odds of having worse Secondary Conditions Surveillance Instrument scores (odds ratio = 1.09, 95% confidence interval = 1.02, 1.17; p = 0.006). We did not find any evidence of a time since injury effect on quality of life, physical function, or participation. Similarly, we did not find any evidence of an age at injury effect on any outcome variable. CONCLUSIONS: Secondary conditions may increase with longer time since injury among people with SCI, suggesting appropriate formal and informal supports are required to minimise the impact of these emerging health problems as individuals age.

General practice visits by people with traumatic spinal cord injury: a Queensland longitudinal study.

People with traumatic spinal cord injury (SCI), although proportionally fewer in number, are known to be high users of primary health care services; however, details of their visits to GPs are unclear. This study presents information about GP utilisation patterns of 193 people with SCI over a 5-year period. Results demonstrate substantially greater GP service utilisation, particularly for young men with SCI, compared with their counterparts in the general population. Interestingly, people with paraplegia were proportionally higher users of GP services than those with tetraplegia. Results indicate the need for specialist support for GPs to meet the SCI-specific needs of this patient group. Specialist SCI outreach teams may be a useful resource to primary health care practitioners.

Investigating changes in quality of life and function along the lifespan for people with spinal cord injury.

OBJECTIVE: To track changes in quality of life and function for people with spinal cord injury (SCI) along the lifespan. DESIGN: A wave panel design in which data were collected annually over 5 years across 6 strata that represented different periods since injury. SETTING: Telephone interviews with participants in their home environment. PARTICIPANTS: People (n=270) who had sustained a traumatic SCI in Queensland, Australia, over the previous 60 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Quality of life was measured using the World Health Organization Quality of Life-8. Human functioning was measured in 3 components. Body structure/function was measured using the Secondary Conditions Surveillance Instrument. Activity was measured using the motor subscale of the FIM (mFIM) and the Clinical Outcomes Variables Scale. Participation was measured using the Community Integration Measure (CIM) and the Impact on Participation and Autonomy questionnaire. RESULTS: Quality of life remained relatively constant across the lifespan. For body structure/function, there was a significant increase in secondary conditions with time since injury. There was a significant decrease in activity as measured by the mFIM for higher functioning individuals. Participation, as measured by the CIM, showed a significant increase with time since injury, but not when adjusted for the American Spinal Injury Association Impairment Scale, income level, and living situation. CONCLUSIONS: The findings of this study highlight that people with SCI are able to maintain quality of life and participation along the lifespan; however, increases in secondary conditions and a decline in function over time are likely. Rehabilitation services could work more effectively at addressing secondary prevention through enhanced monitoring over time, while broader societal responses are likely to hold the key to optimizing human functioning.

Influences on Participation in Life After Spinal Cord Injury: Qualitative Inquiry Reveals Interaction of Context and Moderators.

Background: Greater understanding of the influences on participation in life after spinal cord injury (SCI) can inform rehabilitation theory and practice. Careful qualitative inquiry can reveal subjective meanings associated with the relevant experiences, strategies, and perceptions of those with lived experience of SCI. A search of literature, followed by a thematic synthesis of qualitative studies, was undertaken to bring together these insights in a meaningful way. Methods: The research question guiding the literature review and synthesis was, What do people with SCI perceive to be the influences on their participation in life? Three critical databases were searched for qualitative studies examining influences on participation in life after SCI. Peer-reviewed studies published after 2006, involving adults with SCI living in countries with advanced economies, were included. Data were extracted from 24 articles and subjected to three-level thematic synthesis-the coding of primary data from the studies, the development of descriptive themes based on an organization of those codes, and the generation of analytical themes. Results: The synthesis yielded five analytical themes, supported by 17 descriptive themes. The analytical themes were (1) external contextual influences, (2) personal physical context, (3) personal psychological context, (4) potential moderators of participation outcomes, and (5) temporal dimensions of participating in life after SCI. Interpretation: These themes highlight the complex interactions that shape participation from the perspective of people with SCI. Closer examination of the potential moderators may provide insights into effective rehabilitation interventions. Conclusions: Synthesis of qualitative inquiry provides valuable insights into the perceptions of influences on participation in life from the point of view of people with SCI. The findings of this synthesis are instructive for rehabilitation theory and practice. It can complement what we learn from using the ICF to understand participation.

Evaluating new roles for the support workforce in community rehabilitation settings in Queensland.

INTRODUCTION: Alternative workforce models need to be explored to adequately meet the future health care needs of the Australian population. A new role for the support workforce, to optimise their contribution in community rehabilitation in Queensland--the advanced community rehabilitation assistant (ACRA)--was developed on the basis of service activity mapping and gap analysis. OBJECTIVES: Evaluation of a trial of the new ACRA role at six pilot sites in Queensland. PARTICIPANTS: ACRAs, health professionals and rehabilitation clients. METHODS: Transcripts of semistructured telephone interviews conducted with ACRAs, health professionals and rehabilitation clients were thematically analysed. The nature of the role as well as perceived strengths and weaknesses were explored. RESULTS: The presence of an ACRA was generally seen to diversify and expand local service capacity. The major challenge was the initial intensity of instruction that was required from supervising health professionals. CONCLUSIONS: ACRAs have potential to be valuable resources in the provision of community rehabilitation services. The challenge of meeting each new ACRA's preliminary training needs requires further consideration. A critical mass of people trained to this role may be required to ensure sustainability. Further trial and evaluation is needed to investigate the role more thoroughly over time and in different settings.

Environmental control systems - the experiences of people with spinal cord injury and the implications for prescribers.

PURPOSE: Environmental control systems (ECSs) can potentially influence comfort, safety, security and independence for people with severe impairment from spinal cord injury (SCI). This study, aimed at informing prescription practises, investigated ECS prescription and utilisation from the consumer perspective. METHODS: Qualitative inquiry, through 15 semi-structured interviews, explored the perspectives of people with high level SCI who use ECSs. Data were coded and clustered to provide a description of their perspectives and interpret lessons for prescribers. RESULTS: The data were grouped into six coding clusters related to readiness to engage, training, autonomy, utility, utilisation and attitudes towards the ECS. Data revealed variability in readiness to embrace ECSs during rehabilitation, some frustration related to setting up systems and instances of ECSs not being used to their full potential. Some highly motivated participants found reward through perseverance. All participants valued having some level of autonomy and personal security. Significant implications for prescribers are described. CONCLUSIONS: Understanding the influence of factors related to devices, personal characteristics and individual context on ECS usage can guide clinicians in prescription and training processes to facilitate maximum and ongoing benefit from ECSs. A culture of follow-up and evaluation is to be encouraged. Implications for Rehabilitation A variety of factors may influence whether a person with severe impairment from spinal cord injury fully utilises and persists with using an environmental control system (ECS). Findings from this study illustrate the importance of client readiness for prescription and the influence of client perceptions of value, convenience and aesthetics on ECS use. Prescribers should seek to understand what each client needs to become engaged and proficient with ECS use. Prescribers should be knowledgeable about suggested ECSs. Prescribers should prepare clients for potential difficulties in establishing reliable ECS use and establish support mechanisms to facilitate perseverance until effective ECS use is established.

Factors Which Facilitate or Impede Interpersonal Interactions and Relationships after Spinal Cord Injury: A Scoping Review with Suggestions for Rehabilitation.

Interpersonal interactions and relationships can influence an individual's perceptions of health and quality of life in the presence of disability. In the case of people with spinal cord injury (SCI), positive interpersonal interactions and relationships have been shown to contribute to resilience and adaptability. Understanding factors which facilitate or impede the development and maintenance of relationships after SCI may form the basis for proactive relationship support for people with SCI. To gain a broad insight into these factors, a scoping review was undertaken. Databases were searched for English language studies published between 2000 and 2015 that informed the review question. Sixty-two (62) studies were identified. Thematic analysis was conducted on data extracted from the studies and 51 factors which may facilitate relationships and 38 factors which may impede relationships after SCI were noted. The majority of factors could be categorized as environmental or personal according to the domains of the International Classification of Functioning, Disability, and Health (ICF). The facilitating factors included partner and social support, reciprocity in relationships, and presenting oneself positively. Impeding factors included physical environmental barriers, real and perceived social biases, and poor self-image. Factors identified may inform the provision of supportive, holistic rehabilitation for people with SCI.

Descriptions of community by people with spinal cord injuries: concepts to inform community integration and community rehabilitation.

Effective measurement and optimization of re-entry into the community after injury depends on a degree of understanding of how those injured persons actually perceive their community. In light of the limited research about foundational concepts regarding community integration after spinal cord injury, this study investigated how a large number of adults with spinal cord injury described their local communities. In the course of telephonic interviews, qualitative descriptions of community were obtained from 269 participants (1-56 years postinjury). These were thematically analysed for content and valence by three researchers. In addition to descriptions of community as 'place', findings echoed the three dimensions commonly included in measures of community integration, namely social integration, occupation and independent living. Participants who described their community in social and relationship terms reflected generally positive views about that community, whereas those who described their community in terms of physical space and access expressed a relatively greater proportion of negative views when describing their community. In general, substantial diversity of responses across participants suggested a need for greater complexity in understanding, measurement and clinical application of the notion of community within the area of community integration and participation. Specifically, the importance of focusing on social and relationship dimensions of community integration is emphasized for rehabilitation practice.