Community participation for individuals with spinal cord injury living in Queensland, Australia.

STUDY DESIGN: Sequential mixed method design. OBJECTIVES: Determine factors associated with community participation for individuals with spinal cord injury (SCI). SETTING: Queensland, Australia. METHODS: Phase I consisted of a quantitative telephone survey of 270 people who had sustained a SCI within the past 50 years. To verify and interpret survey findings, Phase II involved a qualitative investigation. One focus group, one dyadic and one in-depth interview were conducted with a separate sample of eight people who had sustained a SCI within the past 50 years. RESULTS: In Phase I, employment, paid or unpaid, was the strongest independent factor associated with community participation, whereas time since injury, completeness of injury, secondary conditions and functional independence were also independently associated. In Phase II, participants expressed that survey findings were consistent with their lived experiences. They explained that overall, they needed a strong reason to participate so that benefits outweigh the effort required to participate. Once out in the community, they recognised that other opportunities for participation arise. CONCLUSION: Rehabilitation services need to support individuals with SCI to find meaningful employment and to engage in activities that provide them with a strong reason to participate.

The relationship between quality of life and disability across the lifespan for people with spinal cord injury.

STUDY DESIGN: Prospective cross-sectional survey. OBJECTIVES: To compare quality of life (QOL) for people with spinal cord injury (SCI) and their able-bodied peers and to investigate the relationship between QOL and disability (impairments, activity limitations and participation restrictions) across the lifespan, for people with SCI. SETTING: A community outreach service for people with SCI in Queensland, Australia. METHODS: A random sample of 270 individuals who sustained SCI during the past 60 years was surveyed using a guided telephone interview format. The sample was drawn from the archival records of a statewide rehabilitation service. QOL was measured using the World Health Organization Quality of Life Assessment Instrument-Bref, impairment was measured according to the American Spinal Injury Association classification and the Secondary Condition Surveillance Instrument, activity limitations using the motor subscale of the Functional Independence Measure and participation restrictions using the Community Integration Measure. Lifespan was considered in terms of age and time since injury. Correlation and regression analyses were employed to determine the relationship between QOL and components of disability across the lifespan. RESULTS: QOL was significantly poorer for people with SCI compared to the Australian norm. It was found to be associated with secondary impairments, activity limitations and participation restrictions but not with neurological level, age or time since injury. The single most important predictor of QOL was secondary impairments whereas the second most important predictor was participation. CONCLUSION: To optimize QOL across the lifespan, rehabilitation services must maintain their focus on functional attainment and minimizing secondary conditions, although at the same time enabling participation.

The need for a multidisciplinary outreach service for people with spinal cord injury living in the community.

OBJECTIVE: To identify the nature and extent of perceived unmet needs of people with spinal cord injury (SCI) living in the community and to determine their preferences regarding multidisciplinary outreach service delivery. DESIGN: Structured telephone interviews. SETTING: Spinal Injuries Unit, Queensland, Australia. SUBJECTS: Sixty people with SCI living in the community were approached for interview and 54 agreed to participate. RESULTS: The results reflected a high need for a specialist, multidisciplinary SCI outreach service following primary rehabilitation. There were a diversity of issues faced by people with SCI. A high or very high need was reported by 31% of participants in relation to physical changes, by 24% regarding transport, by 22% for work issues and by 19% with respect to ongoing education needs. The greatest perceived barrier to needs being met was limited local specialist knowledge about SCI (81% of participants). A service model which includes access to telephone advice was endorsed by 79% of participants, and 43% supported home visiting that is available to rural and remote areas. Spinal Injuries Unit outpatient clinic appointments were also a preference for service delivery (40% of participants). CONCLUSIONS: Trial and evaluation of the telephone as a primary medium for service delivery, and education of local service providers is recommended.