Identifying and understanding the health and social care needs of Indigenous older adults with multiple chronic conditions and their caregivers: a scoping review

The aging of Indigenous populations is pressuring health and social care systems to recognize and account for the needs and cultural values within diverse Indigenous communities [1, 2]. Despite the continuing support and research into Indigenous experiences and efforts to age well [1], Indigenous people in countries such as Canada, the United States, Australia, and Aotearoa/New Zealand continue to experience high rates of multiple chronic conditions (MCC) at younger ages than other populations [1, 3, 4]; resulting in an increase in health and social care needs. Internationally, aging populations are increasing economic demands on services such as housing, public pensions, and health and long-term care supports that assist in aging well [1, 5]. This adds additional challenges for Indigenous people, families, and communities who must work to develop community-level supports in collaboration with settler-government partners [6].

Indigenous leaders and those who provide services designed to address MCC for Indigenous communities require synthesized information on emerging social and health care needs. Despite the need for both Indigenous specific and local information to guide effective planning, to our knowledge, there is no review of the health and social care needs of Indigenous older adults with MCC and their caregivers. As a starting point, we aimed to conduct a comprehensive scoping review asking the following research question: What are the health and social care needs, priorities, and preferences of Indigenous older adults (living outside of long-term care settings) with MCC and their caregivers?

As Indigenous peoples experience population aging, Indigenous leadership, researchers, and policy-influencers are making efforts to support communities by embracing that Indigenous determinants of health are distally rooted in historical and ongoing acts of colonialism [7]. These efforts are aimed at recovering and preserving the well-being, independence, and autonomy of Indigenous peoples. They also aim to understand the health and social care needs for older Indigenous people [1, 3, 8, 9]. This understanding led to the use of an Indigenous Determinants of Health (IDH) theoretical framework that is not purely ‘social’ in nature and does not overlook the ongoing impact of colonialism [7, 10, 11]. Further, this paper incorporates the International Classification of Functioning, Disability and Health (ICF) which was supported by the World Health Organization in 2001 and implemented here as a tool to offer a comprehensive perspective of the health and functioning experiences of Indigenous populations in an effort to interpret the results of the review [12].

The Indigenous Determinants of Health theoretical framework is best described by Charlotte Reading using the metaphor of a tree [7]. The IDH theoretical framework recognizes that the historical legacies within settler dominated societies have distal, deeply rooted, influences that have led to complex interconnected impacts to intermediate (trunk) and proximal (crown and leaves) determinants of Indigenous peoples’ health [11]. Like the tree, the interconnections between these three determinants rely on one another. Briefly, elements that begin at the distal impact the intermediate, resulting in advantages or disadvantages at the proximal level which ultimately impact the health and wellbeing of the individual. The distal determinants are reflective of things that impact health located externally to the individual [11, 13]. The roots of trees are far reaching and often unseen; through this representation, they capture the historical, political, ideological, economical, and social foundations that create the infrastructure for the intermediate and proximal determinants [11]. The deeply embedded roots of Indigenous worldviews, spirituality and self-determination are reflected through the historical and contemporary structures of the distal determinants [11]. An example of how distal determinants affect Indigenous peoples health is through colonialism, which has associated in social, material, and health inequities [11]. Intermediate determinants include things that impact the environment of the individual such as health care, education, social supports, and government resources [10]. Proximal determinants have direct impacts on physical, emotional, spiritual and mental health [10] and include early child development, income and social status, education and literacy, social support networks, employment, working conditions and occupational health, the physical environment, culture, and gender [13]. Disadvantages within these areas (through poverty, discrimination, lack of education, etc.) have shown to result in poorer health status across physical, emotional, mental spiritual, and social realms that effect individual wellness [11]. Nourished roots (distal) and a strong trunk (intermediate) can impact the health of the crown, or the individual. Employing an Indigenous framework aids in recognizing the importance of relationships, kinship, language, and cultural traditions as having a direct impact on the proximal determinants of the individual [11].

In addition to the IDH theoretical framework, the ICF framework offered a comprehensive, multidimensional, and holistic context at both the individual and population level. This framework implies that the interaction between an individual (with a health condition) and contextual factors (environmental and personal factors) lead to (a) impairments in body functions and structures, (b) limitations in activity, and (c) restrictions in participation [12, 14]. Combining the two frameworks assisted in understanding health and social care needs and preferences as related to wellbeing and quality of life on overall functioning [12].

This scoping review was an Indigenous-specific sub-project of a broader review whose review protocol and results have been published [15, 16]. The scoping review protocol focused on understanding the health and social care needs of all community-dwelling older adults with MCC [15]. During the review process, important information was gained about the unique needs of Indigenous older adults with MCC. Thus, after consultation with Indigenous partners and researchers, it became evident that a separate Indigenous-focused review was necessary. This review acknowledges the significance of Indigenous community research ethics and perspectives on Indigenous determinants of health, therefore a sub-team of researchers (including the Principal Investigator (PI) of the overall project (KM) and Indigenous researchers) was created to conduct a review of the Indigenous-specific papers. We used the scoping review methods framework outlined by Arksey and O’Malley [17] and refined by Levac et al. [18], Colquhoun et al. [19], and Daudt et al. [20]. In addition, we followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol (PRISMA-P) [21] throughout the development and preparation of study protocols. As part of the sub-project, this scoping review included six steps: (1) Identifying the research questions (above); (2) identifying the relevant literature; (3) study selection; (4) charting the data; (5) collating, summarizing, and reporting the results; and (6) consulting with key stakeholders and translating knowledge.

Following the development of the research questions, two academic health sciences librarians prepared the search strategy in consultation with the original research team, which included one Indigenous researcher (JW). This comprehensive review involved multiple databases including OVID Medline (1946 to 2017, including Epub Ahead of Print, and In Process & Other Non-Indexed Citations), OVID Embase (1947 to 2017), OVID PsycINFO (1806 to 2017), OVID Social Work Abstracts (1968–2017), EBSCO CINAHL Plus with Full Text (1981 to 2017), EBSCO AgeLine (1966–2017), and Cochrane Central. The search strategies were translated using each database platform’s command language, controlled vocabulary, and appropriate search fields. The search concepts of health and social care needs and priorities, Indigenous populations, and multimorbidity employed the use of MeSH terms, EMTREE terms, APA thesauri terms, CINAHL headings, and text words. Specific search terms for Indigenous populations included those listed in Table S1: Medline Search.

We applied a modified adult age filter to the Medline strategy [22]. This filter was translated and applied to the Embase, PsycINFO, CINAHL, and Cochrane Central search strategies. The filters were not validated. Language limits were applied to capture articles in English, French, Dutch, and German, in all databases where applicable [15]; however only English papers were included in the Indigenous sub-analysis. Unfortunately, the original review methods were not designed to include Spanish or Portuguese articles, which may limit the applicability to Indigenous populations in Central and South America. In May 2017, the research team concluded the final searches. The full Medline strategy is included in Additional file 1: Table S1. Additionally, we searched the reference lists of included studies. Covidence systematic review software was used to facilitate the review [23].

Study selection followed a two-step process [15]: 1) an initial title and abstract review (KM, JW, AFC, RR, SW, SP), and 2) an independent review and assessment by Indigenous reviewers of potentially relevant full text articles for inclusion (SW, RR, SP, AFC). In case of disagreement between reviewers, the lead Indigenous researcher (JW) solved the conflict. Through a multi-step process, both published and unpublished literature was reviewed. The inclusion criteria included:

The exclusion criteria included:

Data abstraction was completed using an Excel Spreadsheet. The data for each study was abstracted by two independent reviewers. Codes representing the World Health Organization’s (WHO) definition of structural and social determinants of health [24] combined with Loppie-Reading’s definition of the IDH [11] were included to map the studies that considered these as important considerations in identifying needs of older adults with MCC. Data extraction included: details on the study (aim of the study, study design, study location, etc.), study characteristics (setting, sample type, sampling method, source of data, etc.), patient and/or caregiver characteristics (age, gender, ethnicity, location, marital status, location [urban/rural/other], relationship to patient, chronic condition/other health information, etc.), socio-economic status of patient (employment, income, education, food security, etc.), health professional characteristics (speciality, experience, etc.), health and social care needs (how were they measured, actual needs identified, etc.), social support networks for patients and/or caregiver (family, neighbours, etc.), and early childhood development. In general, we used the word “Indigenous” as an inclusive term that refers to people who are Indigenous to their respective homelands. However, we retained the terminology that each paper used to refer to the Indigenous Nation involved in each of the included studies (i.e. First Nation, Aboriginal and Torres Strait Islander, Indigenous Australian, Native Hawai’ian, etc.)

The quality of the research studies was assessed using the Mixed Methods Appraisal Tool (MMAT) [25]. The MMAT allows inclusion of qualitative, quantitative, and mixed methods studies with quality criteria relevant to each study design. No studies were excluded based on the quality assessments. In addition, the following quality criteria were applied to assess alignment with established standards in Indigenous health research methods: 1) Indigenous community engagement, and 2) integration of Indigenous perspectives. The Indigenous community engagement criterion was met if the author list included co-authors from Indigenous communities or organizations or if there was explicit description of community engagement approaches. The Indigenous perspectives criterion was met if the research teams included (or consulted with) Indigenous Elders, Knowledge Keepers or both, established an Indigenous advisory structure, used an Indigenous theoretical framework, or employed Indigenous research methods.

To map the data and conduct a thematic content analysis, we used the two frameworks described above. Where appropriate, we used deductive thematic analysis on relevant extracted data from the published studies to map the studies. We aimed to incorporate a rigorous methodological approach suggested within the literature [18]. Consultation has been highlighted as an optional step within the chosen framework [17], therefore we drew on our extensive relationships within the Indigenous community to gather additional perspectives on the themes that were generated in the analysis. On October 10, 2018, we hosted a small, focused workshop that included First Nations community members, including those living with chronic conditions, health care providers, policy and research analysts working in First Nations political organizations, and academic researchers. We described the scoping review and discussed the themes that emerged from the analysis. Their feedback was included and was used to inform the results.

We present the results in two ways: 1) a numerical overview of the amount, type, and distribution of the included literature; and 2) a narrative synthesis and mapping of the results.

This scoping review provides the first informative overview of health and social support needs, priorities, and preferences for a globally aging Indigenous population who are living outside of long-term care settings with multiple chronic conditions and their caregivers.. Our study highlighted the need for access to services and information, building community capacity, social support, preservation of cultural values in health care, and wellness approaches. Similar themes were found in the broader review of the literature that focused on non-Indigenous older adults such as access to information and a focus for prevention strategies (i.e. wellness approaches) to better assist older adults to manage their conditions [16].

Indigenous populations have a strong focus on social support which mostly includes family involvement and the need to return to the traditional ways of intergenerational caregiving [1, 9, 27]. Additionally, staff caring for older adults were called on to be trained in cultural and spiritual awareness, and to develop an understanding that aligns with Indigenous traditional teachings and language [9]. While non-Indigenous older adults were concerned with coordination of services and supports [16], Indigenous populations were heavily concerned with health and social support access issues [1‐3, 9, 26‐28], due to the remote locations to which many of them reside and the limited availability of clinics open to meet their needs [9]. Finally, unique to research conducted with Indigenous older adults with MCC was a focus on building community capacity [8, 9, 26] and the need for preservation of cultural values in health care [1‐3, 26, 27].

Wellness-driven activities include an incorporation of cultural perspectives about relationships, family participation, aging at home, staying on land, wellness/cultural identity on aged care [26]; connecting to culture, spirituality, and balance [3, 26]; and engaging with elders to disseminate knowledge and information [2]. There is a need to incorporate Indigenous concepts of health (including those represented within the Medicine Wheel) into health care service delivery [9]. For example, in Canada, Indigenous health is perceived holistically and includes physical, mental, emotional, spiritual, and cultural aspects of life [9]. There is a need to apply a systems perspective as a useful approach to understand the health and well-being of the Indigenous older population [9].

The use of the Indigenous Determinants of Health (IDH) theoretical framework [10, 11], and the International Classification of Functioning, Disability and Health (ICF) framework provided a unique perspective to understanding the health and social care needs of older Indigenous adults. Combining the frameworks and prioritizing the IDH in the presentation of the results offers a holistic understanding of the preferences of Indigenous older adults as related to wellbeing and quality of life on overall functioning. Although the ICF framework provided us with an understanding that individual, environmental, and personal factors are interrelated, future studies on Indigenous health and social care needs may wish to focus on the IDH theoretical framework only. The IDH when used as a theoretical framework strengthened this study by helping us recognize the importance of Indigenous values such as relationships, kinship, language, and cultural traditions and how they impact individual health. The key IDH that influenced older adults’ needs were education and literacy, ethnicity, and social support/network (proximal); health promotion and health care (intermediate); and a combination of historical and contemporary structures (distal).

The strengths of this review included a comprehensive search of electronic data bases carried out by expert health sciences librarians, which involved some exploration on how to determine search terms for “Indigenous populations,” and two Indigenous reviewers simultaneously abstracting the data and completing multiple checks of the articles in this review. However, a limitation to the search strategy exists in that the database search did not include social programs for Indigenous people that would not be in the health literature. Extending the search to include this will further provide confidence in the representation of the findings related to older Indigenous adults living with MCC.

The IDH and ICF frameworks served as a guide to present our findings and the results resonated with our stakeholder group, which helped to validate the results. Although we incorporate spirituality in the theme “the need for cultural preservation in health care, it must be analyzed more clearly and with more vigor than this analysis has attempted. Further studies that incorporate the IDH model as a theoretical framework must pay closer attention to the importance of spirituality in the analysis. The Indigenous spirituality is a core value and central to balancing holistic health; and is considered as equal as physical, mental and emotional health [9, 27]. Although we did not explicitly examine spirituality as a separate determinant of health, it is reflected in the analysis of the distal determinants of health, specifically the historical and contemporary structures, including Indigenous worldviews.

This scoping review was developed, overseen, and carried out in a collaborative partnership with a research team consisting of knowledge users, health stakeholders and Indigenous scholars. This research is important for health care professionals and leadership working with Indigenous older adults who seek to develop interventions that will meet these needs and assist with improving quality of life. The development of knowledge translation activities needs to reflect an all-inclusive approach between First Nations people and the health sector. Combined with key recommendations from health stakeholders, further thematic analysis of the articles using an approach that reflects local Indigenous knowledge and concepts such as accessible health services and cultural safety will improve findings. The First Nations-specific group will seek further opportunities to expand on the recommendations from this scoping review outside of publishing a manuscript.