A Process for Creating the Aboriginal Children’s Health and Well-Being Measure (ACHWM)

Abstract

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).

Paediatric health-related quality of life: what is it and why should we measure it?

“…In other cases, measures must be developed to reflect distinct conceptualisations of HRQOL. For example, a new measure was necessary to assess HRQOL for indigenous children in Canada,62 because of the importance of spirituality as a key component, that was missing from most North American and European HRQOL measures. Culture also affects the way in which children interpret questions.…”

Reliability of the Aboriginal Children’s Health and Well-Being Measure (ACHWM)

“…Note that the allocation of items to quadrants was made during the ACHWM’s development, based on the expertise of children, using the Medicine Wheel framework as a guide (Young et al 2013). This exploratory analysis confirmed the allocation of 57 items to their previously assigned quadrants.…”

“…The ACHWM is unique in that it was developed for and with Aboriginal children (Young et al 2013, 2015a, b). The content validity of this measure has been established for First Nations, Métis and Inuit children in Canada, and it is being rapidly adopted by First Nations and Aboriginal agencies in Canada, and thus it is urgent that we establish its reliability.…”

“…The 62 items within this measure were developed from the perspectives of Aboriginal children, through 6 full-day focus groups involving 34 children between 8 and 18 years of age, in Wiikwemkoong, Ontario, Canada (Young et al 2013). The ACHWM development was conceptually-driven, based on the Medicine Wheel Framework (Dumont 2005).…”

“…These metrics include the: conceptual foundation; validity, reliability, responsiveness, interpretability, respondent and administrative burden, alternative forms, and cultural and language adaptations (translations) (Terwee et al 2007; Aaronson et al 2002). The conceptual foundation was presented in the initial development paper on the ACHWM (Young et al 2013). The validity of the ACHWM was assessed in comparison to the PedsQL (ACHWM mean = 71.4; PedsQL mean = 71.1; r = 0.52 p = 0.0001) based on data from 48 participants in a community survey in one First Nation community in 2014 (Young et al 2015).…”