Relevance of the Aboriginal Children's Health and Well-being Measure Beyond Wiikwemkoong.

INTRODUCTION: Aboriginal children in Canada experience significant disparities in health in comparison to their mainstream peers. As Aboriginal communities and agencies strive to improve health, it is important to measure the impact of new programs and services. Since many Aboriginal children live in rural and remote communities, it is important that communities have access to measurement tools that are relevant and feasible to implement in these contexts. The Aboriginal Children's Health and Well-being Measure (ACHWM) was developed to meet the need for a culturally relevant measure of health and wellbeing for Aboriginal children (ages 8-18 years) in Canada. It was developed within one First Nation community: the Wiikwemkoong Unceded Territory. The intention from inception was to ensure the feasibility and relevance of the ACHWM to other Aboriginal communities. The purpose of this article is to describe the relevance of the ACHWM beyond Wiikwemkoong. METHODS: This article presents the results of a community-based and collaborative research study that was jointly led by an academic researcher and a First Nations Health leader. The research began with the 58-question version of the ACHWM developed in Wiikwemkoong. The ACHWM was then submitted to a well-established process of community review in four new communities (in sequence): Weechi-it-te-win Family Services, M'Chigeeng First Nation, Whitefish River First Nation, and the Ottawa Inuit Children's Centre (OICC). The review process included an initial review by local experts, followed by a detailed review with children and caregivers through a detailed cognitive debriefing process. Each community/agency identified changes necessary to ensure appropriate fit in their community. The results from all communities were then aggregated and analysed to determine the similarities and differences. RESULTS: This research was conducted in 2014 and 2015 at four sites. Interviews with 23 children and 21 caregivers were completed. Key lessons were learned in all communities that enabled the team to improve the ACHWM in subtle but important ways. A total of 12 questions were revised, and four new questions were added during the process. This produced a 62-question version of the ACHWM, which was endorsed by all communities. CONCLUSIONS: The ACHWM has been improved through a detailed review process in four additional communities/agencies and resulted in a stable 62-question version of the survey. This process has demonstrated the relevance of the ACHWM to a variety of Aboriginal communities. This survey provides Aboriginal communities with a culturally appropriate tool to assess and track their children's health outcomes, enabling them to gather new evidence of child health needs and the effectiveness of programs in the future.

Validity of the Aboriginal children's health and well-being measure: Aaniish Naa Gegii?

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.

Assessing children's interpretations of the Aboriginal Children's Health and Well-Being Measure (ACHWM).

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.

Updating the Canadian hemophilia outcomes-kids life assessment tool (CHO-KLAT Version2.0).

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.

A process for creating the Aboriginal children's health and well-being measure (ACHWM).

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).

Transition to adult-oriented health care: perspectives of youth and adults with complex physical disabilities.

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.