Objectives and importance of study: Values and ethics: guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research (Values and ethics) describes key values that should underpin Aboriginal and Torres Strait Islander (Indigenous)–focused health research. It is unclear how research teams address this document in primary health care research. We systematically review the primary health care literature focusing on Indigenous social and emotional wellbeing (SEWB) to identify how Values and ethics and community preferences for standards of behaviour (local protocols) are addressed during research.
Study type: Systematic review in accordance with PRISMA Guidelines and MOOSE Guidelines for Meta-Analyses and Systematic Reviews of Observational Studies.
Methods: We searched four databases and one Indigenous-specific website for qualitative, quantitative and mixed-method studies published since Values and ethics was implemented (2003). Included studies were conducted in primary health care services, focused on Indigenous SEWB and were conducted by research teams. Using standard data extraction forms, we identified actions taken (reported by authors or identified by us) relating to Values and ethics and local protocols.
Results: A total of 25 studies were included. Authors of two studies explicitly mentioned the Values and ethics document, but neither reported how their actions related to the document’s values. In more than half the studies, we identified at least three actions relating to the values. Some actions related to multiple values, including use of culturally sensitive research processes and involving Indigenous representatives in the research team. Local protocols were rarely reported.
Conclusion: Addressing Values and ethics appears to improve research projects. The academic community should focus on culturally sensitive research processes, relationship building and developing the Indigenous research workforce, to facilitate acceptable research that affects health outcomes. For Values and ethics to achieve its full impact and to improve learning between research teams, authors should be encouraged to report how the principles are addressed during research, including barriers and enablers that are encountered.
Primary health care research focusing on Aboriginal and Torres Strait Islander (Indigenous) peoples’ needs is crucial to ensure evidence based and acceptable care is available. Perceptions that some past Indigenous-focused health research has provided minimal benefit, or excluded Indigenous people, have led to concerns surrounding Indigenous-focused research practices.1
To guide researchers, ethics committees and communities, Values and ethics: guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research2 (Values and ethics) and its companion document3 were developed. For research involving Indigenous people, Values and ethics has the same status and authority as the National statement on ethical conduct in human research.4 Although some authors have described addressing the Values and ethics document during research5-8, its impact on research conduct is unclear.5,9 An evaluation of Values and ethics by the Lowitja Institute and the National Health and Medical Research Council (NHMRC) is under way.10
Primary health care services are considered the ‘frontline’ of the health system and are well positioned to identify and manage problems relating to social and emotional wellbeing (SEWB). The high rates of suicide and psychological distress among Indigenous people11 call for a particular focus on ensuring that SEWB care is effective, evidence based and acceptable. Research provides the framework to explore and assess SEWB care. Many Indigenous-focused primary health care services have programs or teams focusing on providing SEWB care. These services are often part of research teams involving primary health care staff, community members and externally located researchers, who collaborate to conduct SEWB research.12 Particular consideration of this research is needed because of the sensitive nature of research focused on SEWB and the challenges of implementing research in primary health care services.
Values and ethics identifies the following six values as key in underpinning research: reciprocity, respect, equality, responsibility, survival and protection, and spirit and integrity (see review protocol for definitions13).2 Values and ethics is an authoritative statement on Indigenous-focused health research. Other guidance documents include a practical guide for researchers14, a guideline for the ethical conduct of research15 and a document identifying important principles for Indigenous-focused health research.16 In previous work8, authors have drawn on the principles16 to examine the processes and procedures required to address its recommendations.
There is overlap across these documents2,14-16, with a common feature being to involve Indigenous representatives. However, there may be a lack of involvement, or reporting of involvement, of Indigenous people in research. This is demonstrated in a review of Indigenous child health research17 that identified involvement in only 28.6% of the 217 studies included.
Alongside Values and ethics, communities’ preferences and priorities should be considered during research planning and conduct. Community preferences can be formally documented local protocols18, or undocumented standards of behaviour that research projects must adhere to within a community.
Using examples of Indigenous-focused SEWB primary health care research, we review and identify actions taken during research related to the application of Values and ethics and local protocols. Our previous review19 described the study designs, processes and main findings, and assessed the quality of the identified studies.
The methods used in this review are previously published13,19, and are in accordance with PRISMA and MOOSE guidelines. This study is registered with PROSPERO (CRD42015024994). In brief, we searched Medline, Embase, CINAHL, Informit and HealthInfoNet. A date limit of January 2003 to February 2015 was applied to capture qualitative, quantitative or mixed-method studies conducted since the publication of Values and ethics. We included studies that were conducted in primary health care services, focused on Indigenous SEWB and that were conducted by research teams. We defined research teams as collaborations developed to conduct research that include primary health care staff or community members and researchers located outside the community. We included journal articles, reports and evaluations.
SEWB describes a strengths-based, holistic perspective of mental health that acknowledges social, historical and protective factors.20 In this review, we included SEWB, mental health, smoking or alcohol use, and depression and anxiety disorders. Primary health care services include Aboriginal medical services (AMSs), Aboriginal community controlled health services, and health services that provide primary health care or have general practitioners as staff members. Community refers to primary health care or AMS staff, patients, families or community members.
Data were extracted onto standard forms developed for this review. We identified when authors reported, or we identified actions taken relating to, the values detailed in Values and ethics using a previously developed list of potential actions13 and local protocols.
Our search identified 2288 articles and projects. Following screening, 402 were found to be duplicates and 1491 articles were removed as they did not meet our inclusion criteria (described previously19). A total of 395 articles were reviewed by two reviewers, and 32 articles relating to 25 studies were included in the review (Supplementary Table 1 provides a full reference list; available from: www.researchgate.net/publication/317099307_FINAL_2017_05_25_Farnbach_Systematic_Review_Supp_Tables). When two articles reported on one evaluation21,22 or project23,24 and 25,26, or articles appeared to report data collected from one set of surveys27,28, interview/focus group sessions29,30 and 31,32 or questionnaires33,34, we included both articles and considered it as a single study.
The included studies focused on SEWB (nine)25,26,31-40, alcohol misuse (five)27,28,41-44, smoking cessation (four)29,30,45-47 or dual diagnosis (SEWB and drug/alcohol misuse; three).23,24,48,49 Two studies focused on depression.50,51 One focused on depression or anxiety52 and another on a mental health worker program.21,22
Three studies were part of the Australian Integrated Mental Health Initiative (AIMhi)25,26,36,37, a large research initiative aiming to improve outcomes for Indigenous clients of remote mental health services. The AIMhi 125,26, AIMhi 236 and AIMhi 337 studies have involved a research team known as the AIMhi Priority Driven Partnership, which involved community-based and university-based researchers.38 Three studies were part of the Voices United for Harmony program, which developed and assessed a participatory singing program aimed at improving SEWB and physical health.33,34,39,40 Another three focused on alcohol screening and brief interventions in AMSs.41-43 One study that modified a psychological screening instrument50 was followed by another assessing its validity.51
Authors explicitly mentioned Values and ethics in only two studies.44,47 In one47, authors identified their use of participatory action research methods as being in line with the document, and in the other study44, authors reported following Values and ethics during the research process. However, neither described specific actions relating to the values detailed in Values and ethics.
From the 25 studies, we identified 88 actions that related to (endorsed) the values in Values and ethics. Because each action could relate to more than one value, we identified a total of 146 endorsements of the values across all studies (Table 1). Several actions were identified in multiple studies (Table 2). Most common was acknowledging the contribution of primary health care
staff27-34,36,37,39,40,42,49,52, services21,22,31-34,39,40,43,50, patients33,34,39,40,42,49, communities27,28, Indigenous organisations29,30 or community members52 in publications, or including staff as authors on publications.29,30,38,44-47,49-52 In seven studies, Indigenous representatives were involved with research teams.25,26,33,34,38-40,44,52 This endorsed five values. Authors of two studies35,43 reported visiting the community during research planning, with visits helping authors to understand the local context.43 Carey reports35:
The researcher spent approximately 12 months travelling to the community to develop and build relationships … these visits provided the principal researcher with an enhanced awareness of the functioning of the community, helped inform the design of the research, and promoted a greater understanding of the purpose of the research by members of the community.
The largest number of actions we identified from a single study was seven (n = 3 studies).25,26,29,30,52 Some actions endorsed several values. For example, three studies used participatory action research methods25,26,29,30,47 demonstrating respect, equality, responsibility, and spirit and integrity. In one study33,34, authors modified the study to a nonrandomised design following community feedback, demonstrating reciprocity. This recognised the community’s aspirations and demonstrated commitment to work within the spirit and integrity of the community.
Table 1. Percentage of studies with actions that endorsed values2 and the number of endorsements for each value
|Value||Studies with actions identified by reviewers that endorsed each value (N = 25 studies), % (n)||Number of endorsements for each value (n = 88 actions; n = 146 endorsements)a|
|Survival and protection||32 (8)||18|
|Spirit and integrity||52 (13)||13|
Table 2. Summary of reported (by author) and identified (by reviewers) use of Values and ethics
|Action or process identified as addressing the values in Values and ethics (number of studies)||Reciprocity||Respect||Equality||Responsibility||Survival and protection||Spirit and integrity|
|Acknowledgement in the publication of primary health care staff (n = 11)27-34,36,37,39,40,42,49,52, services (n = 8)21,22,31-34,39,40,43,50, patients (n = 5)33,34,39,40,42,49, communities (n = 1)27,28, Indigenous organisations (n = 1)29,30 or community members (n = 1)52||X|
|Publication authorship includes primary health care staff (n = 7)38,44,45(a),46,47,49-51 or Indigenous organisation staff (n = 2)29,30,52||X|
|Research team involves Indigenous representatives: Community Elders (n = 3)33,34,39,40; primary health care staffb (n = 3)33,34,39,40; steering committee membership (n = 1)52; reference group membership (n = 1)44; as investigators (n = 1)25,26; or families, carers and communities were involved (n = 1)38||X||X||X||X||X|
|Research interventions were informed by previous locally conducted studies (n = 2)41,43 or feedback from primary health care staff/patients/community (n = 3)25,26(c),47,50||X|
|Intervention developed within a collaborative framework (n = 1)46||X|
|Participants reimbursed for participation (n = 5) (voucher amount: $2545, $4027,28, $5035,49,52)||X|
|Flexible interview location (n = 2)49,52, time (n = 1)45, or methods (n = 1)31,32||X|
|Community identified need for research (n = 3) (drug and alcohol services48, formal service evaluation35, or alcohol screening and brief intervention42)||X|
|Resources adapted for use by Indigenous people (n = 3) (screening cut-off points27,28, depression screening tool50 or mental health strategy25,26)||X|
|Participatory action research methods used (n = 1).25,26 Used in combination with social–ecological perspective (n = 1)29,30 or yarning techniques (n = 1)47||X||X||X||X|
|Research approved by community research governance committee (n = 4)25,26,31,32,44,45||X|
|Consultation informed resources and training materials (n = 1)23,24 or study instruments (n = 1)27,28(d)||X|
|Study planning and implementation driven by primary health care staff (n = 2)38,45(e)||X||X|
|Regular visits during planning to understand local processes/context (n = 1)43 or to develop research methods (n = 1)35||X|
|Informed consent involved two-step process (n = 1)35 or written, pictorial and translation options (n = 1)25,26||X|
|‘Two-way learning’ processes used (n = 2)21,22,29,30||X||X||X||X||X||X|
|Action plan developed to implement research findings (n = 1)48||X|
|Resources will remain with the community (n = 1)23,24||X|
|Phenomenological research methods used (n = 1)45||X||X|
|Interviews conducted by Indigenous community member (n = 1)45||X||X|
|Chief Executive Officer at primary health care service approved publications or results before release (n = 1)27,28||X|
|Intention to provide information to other communities by identifying processes instead of programs in evaluation (n = 1)35||X|
|Study design developed in conjunction with the research governance committee (health board) (n = 1)35||X||X||X|
|Project underpinned by six Iga Warta principles for Aboriginal health projects (prevention, coordination, sustainability, social determinants of health, sensitivity to Indigenous notions of time and space, and community and family) (n = 1)29,30||X||X|
|Focus on knowledge translation, and findings provided to stakeholders (n = 1)29,30||X|
|Cultural mentorship of researchers by respected Elder (n = 1)29,30||X|
|Visits by researcher during research according to Aboriginal medical service needs and preferences (n = 1)42||X|
|Study proposed by the Indigenous organisation (n = 1)52||X|
|Regular feedback provided to stakeholders. Steering committee (including community representatives) provided feedback on findings (n = 1)52||X||X|
|Authors did not publish some findings to protect participant confidentiality (n = 1)49||X|
|Focus on providing training to primary health care staff (n = 1)44||X|
|Research underpinned by empowerment principles (n = 1)38||X|
|Study modified to nonrandomised design following community feedback (n = 1)33,34||X||X|
Involving Indigenous community representatives in key positions incorporated Indigenous knowledge and experience into research (respect). It was common to involve Community Elders33,34,39,40, primary health care staff33,34,39,40, families, carers and communities38, or any of these as members of a steering committee52, reference group44 or as investigators.25,26 Consultations to inform resources23,24 or study instrument27,28 development were reported twice. Acknowledging the contribution of participants (respect) by providing shopping or food vouchers was reported in five studies.27,28,35,45,49,52 Willingness to modify research according to a community’s values and aspirations through flexible research processes (reciprocity) was also common. This included flexible interview times, locations or methods31,32,41,45,49,52; multiple visits during planning43; or modifying study design following community feedback.33,34
Authors of three studies reported using ‘two-way learning’ principles, which demonstrated equality; survival and protection (efforts to reduce the threat to cultural distinctiveness); and respect (incorporating Indigenous knowledge). This included the Aboriginal Mental Health Worker Program evaluation21,22, AIMhi 125,26 and a smoking cessation study with Aboriginal health workers.29,30 The smoking cessation study29,30 also used participatory action research methods, had a cultural mentor to advise researchers and was underpinned by Iga Warta principles, a set of guiding principles for community participation and service delivery in Indigenous communities. These actions also demonstrated survival and protection, spirit and integrity, and respect.
Some of the other actions relating to survival and protection included involving families, carers or community representatives in the research team.25,26,33,34,38-40,44,52 In addition to using participatory action research methods, Indigenous researchers in AIMhi 1 were investigators25,26, demonstrating efforts to sustain equality and reduce the threat to cultural distinctiveness (survival and protection). Authors of one study decided not to publish some findings to protect the confidentiality of participants.49
No authors reported compliance with documented local protocols; however, a respected Elder provided cultural mentorship to the research team in one study.29,30 This suggests consideration of locally acceptable standards of behaviour.
Our results show that reporting of how research addresses Values and ethics2 is lacking. This suggests that authors may find it difficult to put value statements into practice, a lack of focus on or knowledge of the document, perceptions that reporting observance is unimportant, or that it is not perceived as useful. Reporting incorporation of local protocols is also lacking. Some actions may be underreported because academic journals often impose word limits, restricting reporting of nonmandatory elements of research.
Many of the actions identified that related to Values and ethics were reported as enablers to conducting the research. This suggests that awareness and consideration of the document may improve research implementation. For example, relationships are a key component of Values and ethics, and authors of three studies29,30,35,38 reported strong relationships as an enabler. These relationships were fostered through:
Actions that related to (or endorsed) multiple values used culturally sensitive research processes, rather than one-off actions incorporated into traditional evidence based research methods. These included two-way learning21,22,25,26,29,30, yarning47, participatory action research methods25,26,29,30,47 and Iga Warta principles.29,30 In one study33,34, the design was changed to a nonrandomised design following community feedback, demonstrating the challenges associated with aligning community preferences with what is usually considered scientifically rigorous research.
Involving Indigenous community members in research roles was common, although recruiting Indigenous staff was cited as a barrier to research implementation in one study.29,30 A focus on developing the Indigenous research workforce may address challenges with staffing and participation by facilitating research with greater community endorsement.
There are a few examples of others5-8 who have documented research according to Values and ethics. Interestingly, these examples identify relationships and partnerships as important facilitators to their research, echoing the processes identified in this review.
We suggest that research teams consider the actions identified that relate to Values and ethics. These include culturally sensitive approaches, a focus on relationship building and involving community members. Where appropriate, we recommend that reporting of research includes documentation of actions, experiences and community perspectives, and how these relate to Values and ethics. This will support shared learning between research teams and help clarify the effectiveness, cost and time required to implement research.
This review suggests that it is difficult to understand how Values and ethics is put into practice. Identifying and using culturally appropriate research methods requires commitment from research teams and the academic community. Academic publications may need to increase word limits so research teams can report research processes from all perspectives. This will provide information on the role and potential for Values and ethics to support high-quality, community-accepted research when primary health care services and external researchers collaborate.
We have considered the values outlined in Values and ethics throughout this review. The second reviewer and author is an Aboriginal researcher and has been involved since this review’s inception, including during protocol development, data extraction and analysis. This manuscript has been reviewed by the Aboriginal Health & Medical Research Council of New South Wales. This review responds to ongoing calls for improved research practices of Indigenous-focused research. We hope it provides useful information to Indigenous communities, primary health care services and research teams.
This review is limited to the information reported by authors. Additional actions may have been completed but not documented. Determining cultural appropriateness and community perspectives from the literature is challenging. We have identified where this is reported, but this may not fully identify the extent to which this has occurred. Indigenous communities are diverse, and an appropriate action in one community may not be suitable for another community.
Despite a lack of reporting, it appears that incorporation of the principles in Values and ethics improves research implementation. A focus on relationships and involving community members facilitates research in accordance with the Values and ethics document. Research teams should incorporate flexible, culturally sensitive designs to inform localised interventions, and focus on developing Indigenous researchers. Comprehensive reporting of how research is conducted should be encouraged to ensure community-level benefit and learning between research teams. The evaluation by the Lowitja Institute and the NHMRC will provide further information on the future of Values and ethics.
We acknowledge staff at the University of Sydney Medical Library for their help developing the search strategy for this review. AE received a National Health Research Scholarship (APP1056434). MH received a National Heart Foundation Future Leader Fellowship (100034). These funding bodies had no role in the conduct or reporting of this review.
Externally peer reviewed, not commissioned
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