Understanding the Role of Indigenous Community Participation in Indigenous Prenatal and Infant-Toddler Health Promotion Programs in Canada: A Realist Review

Disparities in Indigenous maternal-child health outcomes persist in relatively affluent nations such as Canada, despite significant health promotion investments. Indigenous community and organisational political leaders, policymakers, knowledge keepers, and health practitioners have been asserting for decades that Indigenous community leadership and participation is critical to Indigenous success not only in the domain of health, but with respect to all aspects of Indigenous social and political affairs. This study is an effort to systematically demonstrate this hypothesis using the application of public health synthesis methods to Indigenous health programme review. It seeks to do so by: (i) identifying Indigenous prenatal and infant-toddler health promotion programmes in Canada that demonstrate positive impacts on prenatal or child health outcomes; and (ii) understanding how, why, for which outcomes, and in what contexts these programmes positively impact Indigenous health and wellbeing. The researchers develop and appraise the evidence for a theory of Indigenous community investment-ownership-activation as an explanation for programme success.

Very briefly, realist reviews like this one start with one or more preliminary theories regarding the mechanisms that drive programme outcomes. Mechanisms are portrayed as the underlying processes that link programme elements and activities to specific programme outcomes within particular context and drive programme success, changes in provider beliefs, or organisational culture. Evidence appraisal is focused on determining whether or not there is support for these initial mechanistic theories and in what contexts. Based on the evidence, preliminary theories are revised as necessary during data extraction and synthesis.

The vital importance of Indigenous community leadership and participation as a key factor linked to Indigenous health programme success was validated by the international findings of a broader literature review (conducted in 2010), which included country-specific syntheses of Indigenous parenting and infant toddler health promotion programmes for Australia, Hawaii, New Zealand, and the United States (US). A 2015 realist evaluation of community-based participatory research by Jagosh et al. found that trust in academic-community relationships is a key process for sustainability of partnerships, expansion of programmes and resources, and systemic transformation including cultural shifts and new policy implementation. In the experience of the lead author, the concepts of Indigenous community investment, ownership, and activation are easily understood and recognised across diverse Indigenous community audiences. The Canadian review team started preliminary theory development using 13 articles identified by the international literature search that described culture-based parenting programmes and interventions in Indigenous populations in Canadian and continental US/Alaska. They held a 2-day consultation meeting with international research team colleagues, policymakers, and service providers to review initial evidence, including identified success strategies (e.g., programme content and processes that reflect local community knowledge, skills, beliefs, and values), hypothesised underlying mechanisms, and linked programme outcomes. Indigenous community leadership and participation (which they coined "community investment") and programming that builds on and transmits Indigenous cultural knowledge and practice (which they coined "cultural integrity") were identified as key domains to be further theorised.

They hypothesised that Indigenous community investment is an essential context for the establishment of a collective understanding and valuing of the programme as something that is derived from and intrinsic to local Indigenous community social systems versus something that has been more or less externally imposed. This underlying mechanism could be described as the collective establishment of Indigenous community ownership - a collective sense that the programme is "ours" versus "theirs". They further hypothesised that this collective identification and valuing of the programme as intrinsic to and aligned with local Indigenous ways of knowing and doing is a powerful and cross-cutting mechanism for triggering programme participation across Indigenous community contexts and diverse program target health domains (see Figure 3). Enhanced outcomes are the result of higher rates of participation in programmes which are more relevant to participants and also more likely to motivate targeted health behaviours as a result of community investment and ownership. "E-miyo-maawai-atoskoatamahk is rooted in Indigenous notions of collectivity, kinship, and reciprocity in social relationships - powerful concepts that provide the foundations not only for Cree societies, but many Indigenous civilizations more broadly."

For the review, the researchers systematically searched computerised databases and identified non-indexed reports using key informants. Included literature evaluated a prenatal or child health promoting programme intervention in an Indigenous population in Canada. Seventeen articles and 6 reports describing 20 programmes met final inclusion criteria. With respect to study aim (see (i), above), just over half (11) of the 20 programmes demonstrated positive impacts that were deemed to be of at least moderate clinical impact. Six programmes documented relatively minor health outcome changes, and the remaining 3 programmes were not linked to any positive health impacts. Programme evidence of local Indigenous community investment, community perception of the programme as intrinsic (mechanism of community ownership), and high levels of sustained community participation and leadership (community activation) were linked to positive programme change across a diverse range of outcomes including: birth outcomes; access to pre- and postnatal care; prenatal street drug use; breastfeeding; dental health; infant nutrition; child development; and child exposure to Indigenous languages and culture. The study also demonstrates that programmes with evidence of Indigenous community investment-ownership-activation are more likely to have significant positive programme outcomes compared to those without.

To cite an example of one study included in the review, Banks' (2003) report on the Ka'nisténhsera Teiakotihsnie breastfeeding promotion programme in the Mohawk community of Kanesatake describes all 3 stages of community investment and subsequent community activation. The programme started with the identification by the community health centre staff of low rates of initiation of exclusive breastfeeding at birth (Stage 1: community prioritises issue). Community health staff then applied for programme funding, hired a nurse researcher, conducted a literature review, considered community strengths and expertise, and analysed barriers in order to further understand and address this problem (Stage 2: broader community engagement). This process revealed an inertia towards breastfeeding among caregivers and the community more broadly that included a lack of confidence by mothers and their families in maternal breastfeeding ability. The breastfeeding initiative therefore aimed to both empower mothers emotionally and also build community awareness and support. It purposefully built upon Mohawk maternal kin support systems and a respected grandmother was hired to be trained and then to support breastfeeding by new mothers and promote breastfeeding in the community more generally (Stage 3: new service informed by broader engagement). This grandmother became the catalyst for cross-community buy-in and breastfeeding promotion through the vehicle of "the loving advice of the ever-present mothers, grandmothers, aunts and sisters". Breastfeeding rates increased significantly over the course of a 6-year period, from the baseline of 19%-75% in the first week of life (Community activation: high levels of sustained local community programme use and support).

Foundational public health theories regarding health behaviour, such as the Theory of Health Behaviour and the Theory of Planned Behaviour, centre on the importance of beliefs and attitudes as drivers of behaviour. There is good evidence demonstrating that it is much easier to influence beliefs and attitudes regarding health behaviours with strategies that fit with the knowledge and social systems of the population of interest. A common concern identified by Indigenous prenatal and infant toddler health promotion programme managers, workers, and clients is that resources that have been developed external to the local community context are not appropriate or relevant (Health Council of Canada, 2011). The authors' theory emphasising the role of Indigenous community investment-ownership-activation increases the likelihood that programmes will be well aligned with local Indigenous knowledge and social systems, since local health workers and community members have led programme development and implementation. In accordance with these mainstream public health behaviour theories, the local programme alignment that results when there is Indigenous community investment-ownership-activation will increase programme success with respect to behavioural outcomes not only because of increased participation in the programme but also because of the increased efficacy of locally aligned messaging in influencing behaviour.

The authors point out that, "[g]iven the large number of existing Indigenous prenatal, infant, and toddler health promotion programs in Canada, there is a relative paucity of publically available program evaluation reporting and room to further develop evaluation methods and tools specifically for Indigenous contexts....It is worth noting that academically derived best practice evidence is not always deemed necessary or relevant by Indigenous community knowledge keepers, who might instead point towards the value of the centuries of experiential trial and error within specific socio-ecologic contexts....[R]ealism...allow[ed] for the explicit formulation of testable theories, which we were able construct in alignment with the base of critical Indigenous knowledge theory that has been developed by our research team over the past decade and the local Indigenous community health practice experiences of the front line Indigenous community health policy makers and practitioners in our study. We found the practical and contextual knowledge of community stakeholders critical in the development and refinement of our theory."

The authors suggest that "[t]he findings of our Indigenous specific study may be relevant to non-Indigenous contexts as well, particularly for socially excluded population groups that may experience health promotion programming as something that is primarily developed externally to them."