Development and validation of the Pediatric Stroke Quality of Life Measure.

AIM: To develop and validate a disease-specific parent proxy and child quality of life (QoL) measure for patients aged 2 to 18 years surviving cerebral sinovenous thrombosis (CSVT) and arterial ischaemic stroke (AIS). METHOD: Utilizing qualitative and quantitative methods, we developed a 75-item Pediatric Stroke Quality of Life Measure (PSQLM) questionnaire. We mailed the PSQLM and a standardized generic QoL measure, Pediatric Quality of Life Inventory (PedsQL), to 353 families. Stroke type, age at stroke, and neurological outcome on the Pediatric Stroke Outcome Measure were documented. We calculated the internal consistency, validity, and reliability of the PSQLM. RESULTS: The response rate was 29%, yielding a sample of 101 patients (mean age 9y 9mo [SD 4.30]; 69 AIS [68.3%], 32 CSVT [31.7%]). The internal consistency of the PSQLM was high (Cronbach's α=0.94-0.97). Construct validity for the PSQLM was moderately strong (r=0.3-0.4; p<0.003) and, as expected, correlation with the PedsQL was moderate, suggesting the PSQLM operationalizes QoL distinct from the PedsQL. Test-retest reliability at 2 weeks was very good (intraclass correlation coefficient [ICC] 0.85-0.95; 95% confidence interval 0.83-0.97) and good agreement was established between parent and child report (ICC 0.63-0.76). INTERPRETATION: The PSQLM demonstrates sound psychometric properties. Further research will seek to increase its clinical utility by reducing length and establishing responsiveness for descriptive and longitudinal evaluative assessment. WHAT THIS PAPER ADDS: A pediatric stroke-specific quality of life (QoL) measurement tool for assessments based on perceptions of importance and satisfaction. Moderate-to-high reliability and validity established for a new clinical scale evaluating QoL among children with stroke. Perceived QoL measured using the Pediatric Stroke Quality of Life Measure appears lower in children with neurological impairment.

Brain injury from a first nations' perspective: teachings from elders and traditional healers.

BACKGROUND: There is a lack of knowledge about how cultural ideas affect First Nations peoples' perception of rehabilitation needs and the ability to access services. PURPOSE: The study explored the perceptions of treating and healing brain injury from First Nations elders and traditional healers in the communities served by Wassay-Gezhig-Na-Nahn-Dah-We-lgamig (Kenora Area Health Access Centre). METHODS: A participatory action approach was used, leading to a focus group with elders and traditional healers. Findings, established through a framework analysis method, were member checked prior to dissemination. FINDINGS: Four themes arose from the data: pervasiveness of spirituality, "fixing" illness or injury versus living with wellness, working together in treating brain injury, and financial support needed for traditional healing. IMPLICATIONS: Funding is required for traditional healing services to provide culturallysafe and responsive occupational therapy services to First Nations individuals with brain injury.

From health care to home community: an Aboriginal community-based ABI transition strategy.

PRIMARY OBJECTIVE: To explore the barriers and enablers surrounding the transition from health care to home community settings for Aboriginal clients recovering from acquired brain injuries (ABI) in northwestern Ontario. RESEARCH DESIGN: Participatory research design using qualitative methods. METHODS: Focus groups conducted with clients with ABI, their caregivers and hospital and community health-care workers. The Framework Method of analysis was used to uncover emerging themes. FINDINGS: Six main categories emerged: ABI diagnosis accuracy, acute service delivery and hospital care, transition from hospital to homecare services, transition from hospital to community services, participant suggestions to improve service delivery and transition, and views on traditional healing methods during recovery. DISCUSSION: A lack of awareness, education and resources were acknowledged as key challenges to successful transitioning by clients and healthcare providers. Geographical isolation of the communities was highlighted as a barrier to accessibility of services and programmes, but the community was also regarded as an important source of social support. The development of educational and screening tools and needs assessments of remote communities were identified to be strategies that may improve transitions. CONCLUSIONS: Findings demonstrate that the structure of rehabilitation and discharge processes for Aboriginal clients living on reserves or in remote communities are of great concern and warrants further research.