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OBJECTIVES: The purpose of this study was to identify concepts of health and well-being important to Aboriginal children and youth. These concepts were necessary for the development of a culturally appropriate measure of health. METHODS: We completed 4 community consultation sessions, 4 advisory committee meetings, and 6 full-day focus groups within the Wikwemikong Unceded Indian Reserve. The focus groups engaged Aboriginal children and youth via relevant cultural teachings, a photography exercise combined with a community bicycling tour, and detailed discussions of health and well-being using photovoice. The process was guided by a conceptual model: the Medicine Wheel. The participants placed their photos on a wall mural and identified their most important concepts. These concepts were synthesized through expert consensus into items and reviewed by the broader community. RESULTS: The participants ranged in age from 8.2 to 17.7 years (mean age=12.3). Through innovative methods, children and youth identified 206 concepts representing the 4 quadrants of the Medicine Wheel: emotional, spiritual, physical and mental. These concepts were refocused, in collaboration with the community, to create a new 60-item measure of health and well-being that was primarily positive in focus. CONCLUSION: This study demonstrates the success of implementing a unique process of photovoice in combination with bicycling and informed by an Aboriginal framework. The results confirm the distinct conceptualization of health and well-being in this population and underscore the necessity for a culturally appropriate measure. This study also produced a first draft of the Aboriginal Children's Health and Well-being Measure (ACHWM).

The challenges of clinical transition were universal. More extensive information and support is needed during transition to ensure an efficient move to appropriate adult-oriented health care.

Health-related quality of life (HRQoL) assessment is recognized as an important outcome in the evaluation of different therapeutic regimens for persons with haemophilia. The Canadian Haemophilia Outcomes-Kids' Life Assessment Tool (CHO-KLAT) is a disease-specific measure of HRQoL for 4 to 18-year-old boys with haemophilia. The purpose of this study was to extend this disease-specific, child-centric, outcome measure for use in international clinical trials. We adapted the North American English CHO-KLAT version for use in five countries: France, Germany, the Netherlands, Spain and the United Kingdom (UK). The process included four stages: (i) translation; (ii) cognitive debriefing; (iii) validity assessment relative to the PedsQL (generic) and the Haemo-QoL (disease-specific) and (iv) assessment of inter and intra-rater reliability. Cognitive debriefing was performed in 57 boys (mean age 11.4 years), validation was performed in 144 boys (mean age 11.0 years) and reliability was assessed for a subgroup of 64 boys (mean age 12.0 years). Parents also participated. The mean scores reported by the boys were high: CHO-KLAT 77.0 (SD = 11.2); PedsQL 83.8 (SD = 11.9) and Haemo-QoL 79.6 (SD = 11.5). Correlations between the CHO-KLAT and PedsQL ranged from 0.63 in Germany to 0.39 in the Netherlands and Spain. Test-retest reliability (concordance) for child self-report was 0.67. Child-parent concordance was slightly lower at 0.57. The CHO-KLAT has been fully culturally adapted and validated for use in five different languages and cultures (in England, the Netherlands, France, Germany and Spain) where treatment is readily available either on demand or as prophylaxis.