Use of health-related quality-of-life measures for Indigenous child and youth populations: a scoping review protocol

IntroductionMeasures of health-related quality-of-life (HRQoL) are increasingly important for evaluating healthcare interventions and treatments, understanding the burden of disease, identifying health inequities, allocating health resources and for use in epidemiological studies. Although many HRQoL measures developed for use in adult populations are robust, they are not necessarily designed, or appropriate, to measure HRQoL for children/youth. Furthermore, the appropriateness of HRQoL measures for use with Indigenous child/youth populations has not been closely examined. The aims of this scoping review are to (1) identify and describe empirical studies using HRQoL measures among children/youth (aged 8–17 years) from Indigenous populations within the Pacific Rim, (2) summarise the study designs and modes of HRQoL measure administration, (3) describe the key dimensions of the identified HRQoL measures used among Indigenous populations, including specifically among Māori and (4) map the HRQoL measure dimensions to commonly used Māori models of health.Methods and analysisThe scoping review framework developed by Arksey and O’Malley and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews guidelines will be followed for best practice and reporting. An iterative search of peer-reviewed published empirical research reporting the use of child/youth HRQoL measures among Indigenous populations will be conducted. This literature will be identified across the following five databases: Ovid (Medline), PubMed, Scopus, Web of Science and CINHAL. The search will be restricted to papers published in English between January 1990 and June 2020. Two reviewers will independently review the papers in two stages. A third reviewer will resolve any discrepancies that arise. A data charting form will be completed using data extracted from each paper.Ethics and disseminationEthical approval was not required for this scoping review. Dissemination will include publication of the scoping review in a peer-reviewed journal. This scoping review will inform a larger research project (HRC 20/166).

A global perspective of Indigenous child health research: a systematic review of longitudinal studies

Background Rigorously designed longitudinal studies can inform how best to reduce the widening health gap between Indigenous and non-Indigenous children. Methods A systematic review was performed to identify and present the breadth and depth of longitudinal studies reporting the health and well-being of Indigenous children (aged 0–18 years) globally. Databases were searched up to 23 June 2020. Study characteristics were mapped according to domains of the life course model of health. Risk of bias was assessed using the National Institutes of Health (NIH) Study Quality Assessment Tools. Reported level of Indigenous involvement was also appraised; PROSPERO registration CRD42018089950. Results From 5545 citations, 380 eligible papers were included for analysis, representing 210 individual studies. Of these, 41% were located in Australia (n = 88), 22.8% in the USA (n = 42), 11.9% in Canada (n = 25) and 10.9% in New Zealand (n = 23). Research tended to focus on either health outcomes (50.9%) or health-risk exposures (43.8%); 55% of studies were graded as ‘good’ quality; and 89% of studies made at least one reference to the involvement of Indigenous peoples over the course of their research. Conclusions We identified gaps in the longitudinal assessment of cultural factors influencing Indigenous child health at the macrosocial level, including connection to culture and country, intergenerational trauma, and racism or discrimination. Future longitudinal research needs to be conducted with strong Indigenous leadership and participation including holistic concepts of health. This is critical if we are to better understand the systematic factors driving health inequities experienced by Indigenous children globally.

A Review of Literature on the Involvement of Children from Indigenous Communities in Anglo Child Welfare Systems: 1973-2018

A series of recent legal and policy developments in Canada have potential to contribute to reconciliation efforts, particularly related to the overrepresentation of Indigenous children in child welfare systems. However, systematic collection, analysis, and synthesis of research knowledge—particularly, research that is locally grounded—on Indigenous child welfare involvement is notably missing from these efforts. With the aim of collating existing research knowledge on this topic, this scoping review of literature includes a broad swath of literature spanning decades (1973-2018) and countries with similar settler colonial histories (Canada, the United States, Australia, and New Zealand). Our search yielded 881 unique research publications. There was an increase in the number of publications over time in all four countries and a trend toward more empirical literature than non-empirical literature. We found that a plurality of publications focused on programs and services (n = 191), and policy or legal (n = 168) themes. While our review highlights a large base of literature on Indigenous child welfare involvement, it also illustrates the limits of the academic literature in representing the knowledge and experience of Indigenous Peoples and the need for more comprehensive synthesis and broader dissemination of the research related to Indigenous child welfare. These limitations restrict the extent to which existing research can inform the meaningful development of Indigenous child welfare policy in Canada. Due to these gaps, we advocate sustained investment in efforts to synthesize diverse sources of knowledge, support for open source publications, and structural support for Indigenous control of knowledge collection and dissemination regarding policy development related to their communities.