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The Outdoor Adventure Leadership Experience (OALE) is an outdoor health promotion initiative primarily designed for youth. This program was developed through community-based participatory research in a First Nations Community in northern Ontario: Wiikwemkoong Unceded Territory. It is a 9- or 10-day intensive program involving a wilderness canoe expedition homeward through the traditional territory of Wiikwemkoong. The purpose of this study was to evaluate the impact of the OALE on youth well-being, using a culturally appropriate measure of health: The Aboriginal Children's Health and Well-being Measure (ACHWM©). A pre- and post-intervention study design was used to assess the impact of the OALE on health and well-being. Twenty-eight participants completed both the ACHWM and the Global Health Rating (GHR) instruments before and after the OALE intervention. In total, 68% of participants reported higher ACHWM scores after the OALE ([Delta] = 3.9, p = 0.014). There were improvements in the Medicine Wheel quadrants score of the ACHWM (spiritual, emotional, physical, and mental). Although 25% of participants had higher scores on the GHR, this did not reach statistical significance (p = 0.55). However, this study highlights the value of evaluating local programming in a culturally-relevant way. Using the ACHWM, it was demonstrated that there was a significant change in the well-being of the OALE youth participants; this was something that the GHR was unable to capture. Thus, the ACHWM appears to be sensitive to short-term changes in health. More research is needed to confirm the specificity and sensitivity of the ACHWM in different populations and contexts.

Connecting through outdoor adventure is a process that may or may not seem obvious. The word "connecting" resonates with a powerful and extensive implied meaning that the authors feel compelled to share. A recent collaborative research project between leaders from the Wikwemikong Unceded Indian Reserve and researchers from Laurentian University helped to uncover, or rediscover, that meaning through a series of outdoor adventure leadership experiences (OALE) designed for youth from this northern Ontario First Nations reserve. In this article, the authors aim not only to introduce the ways in which the OALE impacted resilience and well-being for Wikwemikong youth, but also to extend and apply their understanding of connecting beyond the context and culture within which it is rooted. They reveal how the OALE research reached beyond the youth participants, and how their experiences and stories have touched the authors on a personal level. Since research can be a deeply reflexive process, and it impacts all who are involved, the authors share this reflexive perspective through two personal philosophies of connecting through outdoor adventure. (Contains 1 figure.)

Researchers have found important differences among population sub-groups when considering their "determinants of physical activity". The health of Francophones and Northern Ontario residents in Canada has been assessed as relatively poorer than the general population. Understanding the determinants of physical activity in these populations holds considerable promise for well-informed public health intervention. This quantitative study examined the social and environmental determinants of physical activity among two language groups and geographical locations within Northern Ontario Canada. A convenience sample of 256 adults was surveyed using the International Physical Activity Questionnaire, Social Support & Exercise Survey, and the Environmental Supports for Physical Activity Questionnaire. Age and gender adjusted regression models identified that social support from family and peers played a limited role in the Francophone sample compared to the Anglophone sample. Further, perceptions of environmental supports for physical activity in urban and rural locations within Northern Ontario were relatively similar and few of these variables emerged as positive contributors to leisure-time activity levels. Our findings suggest that the importance of social support for physical activity differs based on socio-linguistic status and that environmental supports play a limited role among active northerners. Future research directions and recommendations for practice are offered. (Contains 6 tables and 1 figure.)

Background: Current requirements for ethical research in Canada, specifically the standard of active or signed parental consent, can leave Indigenous children and youth with inequitable access to research opportunities or health screening. Our objective was to examine the literature to identify culturally safe research consent processes that respect the rights of Indigenous children, the rights and responsibilities of parents or caregivers, and community protocols. Methods: We followed PRISMA guidelines and Arksey and O'Malley's approach for charting and synthesizing evidence. We searched MEDLINE, PsycINFO, ERIC, CINAHL, Google Scholar, Web of Science, Informit Indigenous Collection, Bibliography of Native North Americans, and Sociological Abstracts. We included peer-reviewed primary and theoretical research articles written in English from January 1, 2000, to March 31, 2022, examining Indigenous approaches for obtaining informed consent from parents, families, children, or youth. Eligible records were uploaded to Covidence for title and abstract screening. We appraised the findings using a Two-Eyed Seeing approach. These findings were inductively coded using NVivo 12 and analyzed thematically. Results: We identified 2,984 records and 11 eligible studies were included after screening. Three key recommendations emerged: addressing tensions in the ethics of consent, embracing wise practices, and using relational approaches to consent. Tensions in consent concerned Research Ethics Board consent requirements that fall short of protecting Indigenous children and communities when culturally incongruent. Wise practices included allowing parents and children to consent together, land-based consenting, and involving communities in decision-making. Using relational approaches to consent embodied community engagement and relationship building while acknowledging consent for Indigenous children cannot be obtained in isolation from family and community. Conclusions: Very few studies discussed obtaining child consent in Indigenous communities. While Indigenous communities are not a monolith, the literature identified a need for community-driven, decolonized consent processes prioritizing Indigenous values and protocols. Further research is needed to examine nuances of Indigenized consent processes and determine how to operationalize them, enabling culturally appropriate, equitable access to research and services for all Indigenous children. [ABSTRACT FROM AUTHOR]

Indigenous voices are largely silent in the outdoor education and adventure therapy literature. The purpose of this research collaboration was to understand how a 10-day outdoor adventure leadership experience (OALE) may promote resilience and well-being for Indigenous youth through their participation in the program. The process was examined through a community-based participatory research project that sought insight from the perspectives of one First Nations community in Canada. The OALE was implemented with six different groups for a total of 43 youth participants (ages 11.9-18.7 years) from Wikwemikong Unceded Indian Reserve in northeastern Ontario. Field data were collected from multiple sources including participant interviews, journals, focus groups, and talking circles. Using a critical ethnographic lens, we analyzed the data inductively to understand how the OALE promoted resilience and well-being. We listened to Indigenous voices, adhered to principles of Indigenous coding for thematic content and respected Indigenous ways of knowing for interpreting results. The process of connecting to the Good Life ("Anishinaabe Bimaadziwin") or waking up ("nsidwaaswok") to the Good Life emerged as the dominant theme. Connecting to the Good Life may offer a simple yet compelling way to understand the net impact of the OALE.

In western democracies like Canada, children develop understandings of themselves by participating in physical, social, and civic activities. Such activities occur in the built environments within which they live, learn, and play. Children with motor impairments are only able to engage in these activities in environments that are accessible. These children comprise a small, marginalized population that has rarely been included as research participants. Hence, very little is known about their perspectives of the accessibility of their environments. To redress this knowledge gap, we conducted an exploratory sequential mixed methods study with and for physically disabled children to garner research evidence that could be used to optimize Canadian public policies. Using child- and disability-friendly methods, we aimed to determine: 1) the accessibility of homes, schools, and neighborhoods; and 2) how disabled children navigated and evaluated these environments. To these ends, we conducted an ethnographic Case Study Series (n=13), which yielded intensive research findings. Using the key ethnographic findings, we developed a cross sectional survey for a larger sample of children and youth (n=428). This article describes the strategies used and challenges faced to design and conduct this research.

Introduction: The transition to adulthood is extremely difficult for individuals with disabilities. We sought to explore the specific issue of transition to adult-oriented health care in a Canadian context. Methods: We conducted semi-structured individual interviews with 15 youth and 15 adults with cerebral palsy, spina bifida, and acquired brain injuries of childhood, and their parents (n = 30). Respondents discussed their health care services, their experience with clinical transition, and contributing factors. We analyzed the transcripts using qualitative methods. Results: All participants identified challenges in transition, including: lack of access to health care; lack of professionals' knowledge; lack of information and uncertainty regarding the transition process. Two solutions were identified: "early provision of detailed information" and "more extensive support" throughout the clinical transition process. Discussion: 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. (Contains 2 tables and 3 footnotes.)

Mi'kmaq Elder Albert Marshall coined "Two-Eyed Seeing" in 2004, an Indigenous concept that emphasizes integrating the strengths of multiple perspectives to address complex challenges in ways that benefit all. In 2011, Two-Eyed Seeing became a policy of the Canadian Institutes of Health Research (CIHR)–Institute of Aboriginal Peoples' Health, as a part of its 5-year plan, and in 2012, CIHR funding was directed toward supporting efforts that apply the concept of Two-Eyed Seeing to research. However, little is known about how Two-Eyed Seeing has been operationalized in research. To address this ambiguity, a scoping review was conducted to map the key concepts involved when researchers intend to follow Two-Eyed Seeing guiding principles to study Indigenous health topics. Three research questions guided this scoping review: (1) What are the general characteristics (e.g., location of study, health topic studied) of primary research that has attempted to apply Two-Eyed Seeing when studying Indigenous health topics? (2) How did researchers operationalize the concept of Two-Eyed Seeing when they applied it to primary studies regarding Indigenous health topics? and (3) What process-related elements were present in Two-Eyed Seeing studies that accomplished their objectives? The results of this scoping review indicate there is an increasing trend in Two-Eyed Seeing–related peer-reviewed publications since its formal introduction by Mi'kmaq Elder Albert Marshall. The selected Two-Eyed Seeing–related projects were predominately conducted in Canada and published between 2011 and 2019. Projects predominately incorporated a community-based (participatory) research approach and qualitative/Indigenous methods, and six core process–related themes/elements were identified: (i) power was shared, (ii) culturally safe spaces were fostered, (iii) institutional and community ethics were followed, (iv) research projects were transformative, (v) rigor was maintained, and (vi) the structure of Western academia and traditional policy decision-making processes provided challenges for research teams and community partners, respectively. [ABSTRACT FROM AUTHOR]

Background: The International Physical Activity Questionnaire (IPAQ) has received significant attention since the late 1990s. As it currently stands, its long version has been translated in English, German, Icelandic, Korean, Polish, Spanish, Turkish, and Vietnamese. However no data originating from the self-administered long version (last 7 days) of the IPAQ (IPAQ-SALV) is available for French Canadians. This study developed a self-administered long version (last 7 days) of the IPAQ in Canadian French (IPAQ-SALVCF) and assessed its psychometric properties. Methods: The original IPAQ-SALV was linguistically translated, back-translated, and then reviewed in a focus group to ensure its meaning had been retained. Data were collected on a sample of 34 Francophones from Northern Ontario, and the results compared with step counts assessed by 7-day pedometer recording. Test-retest reliability was examined with a 24-hour delay between questionnaire completion on day 8 and day 9 of the protocol. Convergent validity was assessed by comparing IPAQ-SALVCF (last 7 days) results to average step counts over a 7-day period. Results: Intraclass correlation coefficients (ICC) revealed that the IPAQ-SALVCF results were stable between days. The ICC for total activity scores was highest at 0.93 (CI: 0.86 to 0.97). Total activity scores were also significantly related to pedometer step counts (Pearson r = .66 P < .01). These results confirm those obtained in prior research Conclusion: The IPAQSALVCF is a reliable and valid measure of physical activity for French Canadians. [ABSTRACT FROM AUTHOR]

Colonialism is a fundamental determinant of Indigenous people's health in Canada, yet little is known about its effects on food systems and dietary decisions in First Nation communities. A socioecological approach was used to explore the determinants of dietary decisions made by Indigenous caregivers. Conclusions are drawn from a narrative analysis of eight focus groups involving 33 caregivers in six First Nation communities. Caregivers identified the changes that they have observed in how food is procured, distributed, processed and prepared, along with the nutritional consequences and the sociocultural meanings of these changes. Determinants such as participation in the wage economy, low income, hunting and fishing regulations, availability of fish and game, and the proliferation of inexpensive, processed foods have altered the food systems and influenced dietary decisions made by caregivers in six First Nation communities. Initiatives such as community gardens, community freezers and community hunting camps are ways that these communities are seeking to regain food sovereignty. [ABSTRACT FROM AUTHOR]

Background: Aboriginal children experience challenges to their health and well-being, yet also have unique strengths. It has been difficult to accurately assess their health outcomes due to the lack of culturally relevant measures. The Aboriginal Children's Health and Well-Being Measure (ACHWM) was developed to address this gap. This paper describes the validity of the new measure.Methods: We recruited First Nations children from one First Nation reserve in Canada. Participants were asked to complete the ACHWM independently using a computer tablet. Participants also completed the PedsQL. The ACHWM total score and 4 Quadrant scores were expected to have a moderate correlation of between 0.4 and 0.6 with the parallel PedsQL total score, domains (scale scores), and summary scores.Results: Paired ACHWM and PedsQL scores were available for 48 participants. They had a mean age of 14.6 (range of 7 to 19) years and 60.4 % were girls. The Pearson's correlation between the total ACHWM score and a total PedsQL aggregate score was 0.52 (p = 0.0001). The correlations with the Physical Health Summary Scores and the Psychosocial Health Summary Scores were slightly lower range (r = 0.35 p = 0.016; and r = 0.51 p = 0.0002 respectively) and approached the expected range. The ACHWM Quadrant scores were moderately correlated with the parallel PedsQL domains ranging from r = 0.45 to r = 0.64 (p ≤ 0.001). The Spiritual Quadrant of the ACHWM did not have a parallel domain in the PedsQL.Conclusions: These results establish the validity of the ACHWM. The children gave this measure an Ojibway name, Aaniish Naa Gegii, meaning "how are you?". This measure is now ready for implementation, and will contribute to a better understanding of the health of Aboriginal children. [ABSTRACT FROM AUTHOR]

Background: There are emerging opportunities to improve the health of Aboriginal children and youth. The Aboriginal Children's Health and Well-being Measure (ACHWM) was developed to enable Aboriginal communities to obtain group-level data from the perspectives of their children 8 to 18 years of age. The survey was developed in collaboration with children, based on the Medicine Wheel framework. The purpose of this study was to ensure that children and youth interpreted the ACHWM questions consistently and accurately and to establish the face validity of the survey. Methods: Children and parents/caregivers from the Wikwemikong Unceded Indian Reserve (Canada) participated in a detailed interview process as they completed the ACHWM, in 2012. Each participant worked through their thought process verbally, to enable the interviewer to identify questions that were misinterpreted or inconsistently interpreted. Questions were revised based on feedback from the participants, and reviewed with new participants until a stable version was established. The resulting version was reviewed by health care providers and community members to further ensure cultural relevance and face validity within the community. Results: A total of 18 interviews, with 9 children and 9 caregivers, were required to achieve a stable version of the survey. The children ranged in age from 8 to 18 years. Revisions were required for 19 questions. Most of these revisions were minor linguistic changes. In addition, 6 questions were deleted due to consistent problems and 4 questions were created to address gaps identified during the process. Community members confirmed the appropriateness of the measure for their community and communicated their pride in their youth's role in the development of this survey. Conclusions: The result was a 58-question version of the ACHWM that was consistently interpreted and culturally appropriate, and had face validity confirmed by experts from the community, children and their parents/caregivers. The ACHWM is ready to be assessed for relevance to other Aboriginal communities. [ABSTRACT FROM AUTHOR]

Background: Quality of life (QoL) is increasingly recognized as an important outcome measure in clinical trials. The Canadian Hemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT) shows promise for use in China. Objective: To adapt the CHO-KLAT version 2.0 for use in clinical trials in China. Methods: Forward and back translations of the CHO-KLAT2.0 were completed in 2008. Between October 2009 and June 2010, a series of 3 focus groups were held with 20 boys and 31 parents in rural and urban China to elicit additional concepts, important to their QoL, for the Chinese CHO-KLAT2.0. All of the items identified by boys and parents were reviewed by a group of experts, resulting in a Chinese version of the CHO-KLAT2.0. This version underwent a detailed cognitive debriefing process between October 2010 and June 2011. Thirteen patient-parent pairs participated in this cognitive debriefing process until a stable and clearly understood Chinese version of the CHO-KLAT2.0 was obtained. Results: The initial back translation of the Chinese CHO-KLAT2.0 was slightly discrepant from the original English version on 12 items. These were all successfully adjudicated. The focus groups identified 9 new items that formed an add-on Socio-Economic Context (SEC) module for China. Linguistic improvements were made after the 2nd, 5th, 7th and 13th cognitive debriefings pairs and affected a total of 18 items. The result was a 35 item CHO-KLAT2.0 and a SEC module in Simplified Chinese, both of which have good content validity. Conclusion: This detailed process proved to be extremely valuable in ensuring the items were accurately interpreted by Chinese boys with hemophilia ages ≤18 years. The need for the additional SEC module highlighted the different context that currently exists in China with regard to hemophilia care as compared to many Western countries, and will be important in tracking progress within both rural and urban China over time. Changes based on the cognitive debriefings suggest that expert verbatim translation alone is not sufficient. The Chinese version of the CHO-KLAT2.0 is well understood by boys with hemophilia in China. Next steps will be to test its construct validity and reliability in boys with hemophilia in China. [ABSTRACT FROM AUTHOR]

Competing Interests: Competing interests: The copyright on the Aboriginal Children’s Health and Well-being Measure is jointly held by Nancy L. Young, Mary Jo Wabano and Stephen Ritchie. This measure is shared with Aboriginal communities and agencies free of charge. No other competing interests were declared.

Objective: To date, there are no standardized disease activity tools for systemic juvenile idiopathic arthritis (sJIA). We developed a core set of disease activity measures for sJIA., Methods: We conducted a validation study in patients with sJIA recruited from 3 Canadian institutions. Disease activity scores were based on questionnaires, clinical factors, and laboratory measures. The physician's global assessment was our criterion standard. We determined the strength of association of each item with the criterion standard. We then surveyed international experts to determine the top 10 items. Finally, we used the experts' responses to generate a proposed core set of disease activity measures., Results: We enrolled 57 subjects - 26 with moderately or severely active disease, and 31 with mildly active or inactive disease. Items that most strongly correlated with the criterion standard were number of active joints (r = 0.79), parent's global assessment of disease activity (r = 0.53), erythrocyte sedimentation rate (ESR; r = 0.62), and C-reactive protein (CRP; r = 0.61). The response rate from international experts was 82% (154/187). Items with the most votes, in descending order, were number of active joints, number of days with fever in the preceding 2 weeks, patient's and parent's global assessments of disease activity, sJIA rash, ESR, CRP, and hemoglobin level., Conclusion: We propose a core set of items for measuring disease activity in sJIA. Future research should be aimed at further validation of this core set in the international context.

Background: Cerebral Palsy (CP) is becoming more prevalent in the adult population, but there is limited information available regarding their Leisure-Time Physical Activity (LTPA)., Objective: To investigate the self-reported frequency and LTPA participation patterns in adults with CP, compared to the Canadian general population (CGP)., Methods: This was a cross-sectional, follow-up-survey of a cohort of 145 persons with CP. The primary outcome was the level of participation in LTPA. Questions were also posed about the motivations and self-reported barriers to LTPA participation. The survey results were compared to CGP estimates from the Canadian Community Health Survey (CCHS)., Results: Fifty-four participants completed the survey, and 90% reported participation in at least one LTPA per week. On average, they reported participating in LTPA 7.3 ± 5.7 times/week. They also reported participating in an average of 4.1 ± 2.4 different types of LTPA. Walking, home-exercise, and swimming were the most frequently reported as a primary LTPA in the CP sample. These finding were comparable to those from the CGP. However, adults with CP were more likely to participate in home-exercise than the CGP (p < 0.05). More than 40% reported that the purpose of their LTPA was fitness or body maintenance and 56% indicated an interest in starting new activities. Various barriers were also reported., Conclusions: Adults with CP frequently participated in LTPA. However, the majority of them are not achieving recommended daily physical activity levels. Also their LTPA habitually focuses on rehabilitative exercises and the diversity of LTPA is limited by several barriers., (Copyright © 2015 Elsevier Inc. All rights reserved.)

Purpose: The purpose of this qualitative study was to explore the experiences of youth with different disabilities from across Canada during their transitions from adolescence to adulthood., Methods: Qualitative methods, using a phenomenological tradition, explored the meaning of the lived experiences of youth with disabilities in transition to adulthood. Purposeful sampling was used to select people with a range of experiences, background, location and demographic characteristics. Individual interviews with key informants and a focus group with an "expert panel" of participants were the methods of data collection. Data analysis was iterative and followed established practices of phenomenology., Results: Over 50 people, including youth with different disabilities, parents/caregivers and service providers from different organizations and systems across Canada participated in individual and/or focus group interviews. An overarching theme of "complexities" emerged from the data analysis. Complexities were related to the interactions between person and environment during transition experiences. Six subthemes about complexities were explored in depth to describe the primary person-environment interactions that were identified by study participants., Conclusions: The complexities involved in the interactions between person and environment during transitions to adulthood appear to be similar for youth with different types of disabilities. Recommendations are provided to address these complexities using holistic and collaborative approaches in service delivery and future research. Implications for Rehabilitation The complexities involved in transitions to adulthood appear to be similar for youth with different types of disabilities. Rehabilitation service providers can address these complexities using holistic, strengths-based and collaborative approaches. Service providers and researchers in rehabilitation need to acknowledge the interactions between person and environment rather than addressing each component separately. Future research should include youth, families and community members on research teams to ensure that complexities are adequately addressed.

Objectives: Hemophilia is an X-chromosome-linked disorder associated with recurrent bleeding into muscles and joints, leading to pain and limitations in physical function that may diminish quality of life. The Canadian Hemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT) is a disease-specific measure of quality of life that was recently revised to facilitate cross-cultural adaptation. This study assessed the validity and reliability of version 2.0 of the CHO-KLAT (CHO-KLAT2.0)., Methods: Content validity was assessed via detailed cognitive debriefing to confirm that Canadian boys understood the CHO-KLAT2.0. The measurement properties of the CHO-KLAT2.0 were assessed in comparison to those of the PedsQL, the Haemo-QoL, and two global ratings. Most children completed the CHO-KLAT2.0 a second time to assess test-retest reliability., Results: Cognitive debriefing was completed with 12 boys (age 8.6-17.8 years) and 9 of their parents and resulted in no substantive changes. Sixty boys (mean age 11.8 years) participated in the validation phase, which showed a mean CHO-KLAT2.0 score of 75.4±12.0, strong correlations with the PedsQL (r = 0.62, P<0.001) and Haemo-QoL (r = 0.64, P<0.001), and moderate correlations with global ratings of hemophilia bother (ρ =-0.39, P = 0.002) and health (ρ =-0.47, P = 0.0002). Test-retest concordance was better among parents (0.79) than among boys (0.63)., Conclusions: This study establishes the measurement properties of the CHO-KLAT2.0. The summary scores are very similar to those from the original development study, and thus, these have not been affected by the revisions. These results provide reference standards for comparing data from other countries to the Canadian experience and to estimate sample sizes for future clinical trials., (Copyright © 2013 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.)

Objective: To describe the health and health-related quality of life (HR-QoL) outcomes of youths and young adults with spina bifida., Study Design: One global rating of self-rated health and 2 generic measures of HR-QoL were administered to a group of youths and young adults with spina bifida. HR-QoL was measured using the Health Utilities Index Mark 3 (HUI3) and the Assessment of Quality of Life version 1 (AQoL)., Results: Data was obtained from 40 youth (mean age 16.0 years) and 13 young adults (mean age 26.6 years). Most youth rated their overall health as either excellent or very good (65%) compared with fewer adults (23%) (P = .007). The mean HR-QoL scores for youths versus adults were 0.57 versus 0.36 (P = .03) for the HUI(3) and 0.37 versus 0.25 for the AQoL (P = .09). HUI(3) and AQoL scores were correlated with level of anatomic lesion (rho = 0.64 and rho = 0.42, respectively)., Conclusions: The HR-QoL of youths and young adults with spina bifida was low on measures that are aggregated using societal values (the HUI3 and AQoL). This is in contrast to their single global self-ratings of health, which were more favorable. These findings underscore the distinction between ratings of HR-QoL based on societal values versus the personal lived experiences of adults with childhood-onset disability., (Copyright © 2013 Mosby, Inc. All rights reserved.)

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).

Background: Since the advent of combination antiretroviral therapy, in developed countries HIV increasingly is perceived as a long-term illness. Individuals may experience health-related consequences of HIV and its associated treatments, a concept that may be termed disability. To date, a comprehensive framework for understanding the health-related consequences experienced by people living with HIV has not been developed. The purpose of this research was to develop a conceptual framework of disability from the perspective of adults living with HIV., Methods: We conducted four focus groups and 15 face-to-face interviews with 38 adults living with HIV. We asked participants to describe their health-related challenges, their physical, social and psychological areas of life affected, and impact on their overall health. We analyzed data using grounded theory techniques. We also conducted two validity check focus groups with seven returning participants., Results: Disability was conceptualized by participants as multi-dimensional and episodic characterized by unpredictable periods of wellness and illness. The Episodic Disability Framework consisted of three main components: a) dimensions of disability that included symptoms and impairments, difficulties carrying out day-to-day activities, challenges to social inclusion, and uncertainty that may fluctuate on a daily basis and over the course of living with HIV, b) contextual factors that included extrinsic factors (social support and stigma) and intrinsic factors (living strategies and personal attributes) that may exacerbate or alleviate disability, and c) triggers that initiate momentous or major episodes of disability such as receiving an HIV diagnosis, starting or changing medications, experiencing a serious illness, and suffering a loss of others., Conclusion: The Episodic Disability Framework considers the variable nature of disability, acknowledges uncertainty as a key component, describes contextual factors that influence experiences of disability, and considers life events that may initiate a major or momentous episode. This framework presents a new way to conceptualize disability based on the experience of living with HIV.

Background: It is important to measure the quality of life (QoL) of boys with haemophilia, because the diagnosis has a significant impact on their lives and this impact fluctuates over time. A disease-specific measure of QoL is required because the aspects of life that are affected by haemophilia may differ from those assessed by generic QoL measures. This paper describes the final phase of development of a disease-specific measure of QoL for boys with haemophilia: the Canadian Haemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT)., Procedure: A 79-item version of the CHO-KLAT was administered to 52 children. A detailed item analysis was conducted to shorten the CHO-KLAT. The reliability of the revised version was assessed using intraclass correlation coefficients. Validity was assessed by comparing it to the PedsQL and the HaemoQoL., Results: The item analysis resulted in the retention of 35 strongly performing items (CHO-KLAT(35)). These items were aggregated into the CHO-KLAT(35) summary score. Repeated measures reliability of the CHO-KLAT(35) was 0.74 for children and 0.83 for parents, and the child-parent concordance was 0.75. The validity of the CHO-KLAT(35) was confirmed by a correlation of 0.78 with the Haemo-QoL and of 0.59 with the PedsQL., Conclusions: The CHO-KLAT(35) is a reliable and valid measure of QoL for boys with haemophilia.

The delivery of health care is often segmented into sectors. In Canada, hospital care has traditionally been distinct from community care, and thus the transition of patients across sectors has been challenging. This paper focuses on the systematic development of an integrated model of care for children, for the purpose of smoothing the transition from hospital to home. The new service model uses emerging telecommunications technology to link hospital care providers to patients at home and is termed "telehomecare" (THC). Independent models of THC were developed for three sites across Canada through semistructured interviews and focus groups. Participants included health care providers and administrators from the hospital and community, and patient families. The resulting models were compared using content analysis to determine whether there was a core model of THC that was generalisable across Canada. A core model of THC was identified that includes the use of videoconferencing to enable the integration of hospital- and community-based care to support patients during the initial stages of the transition to home. Each site also articulated unique characteristics in their service model that were related to the nature of their health care delivery system and patient population. This paper describes the core model of transitional care, presents a synopsis of each of the three models, and compares the models. THC provides opportunities to address limitations in the current system and to improve upon equity of access to quality care for children making the transition from hospital to home.