Background
Improving the wellbeing of Indigenous populations is an international priority [
1]. Aboriginal and Torres Strait Islander peoples are Australia’s First Peoples, and maintain some of the longest continuing cultures in the world [
2]. The 3% of Australians who identify as Aboriginal and/or Torres Strait Islander are a heterogeneous peoples, comprising a diversity of cultures and experiences. The intergenerational impacts of colonisation include trauma, forced disconnection from land and culture, persisting socioeconomic disadvantage, and systemic, institutional, and interpersonal racism. While Aboriginal and Torres Strait Islander peoples have demonstrated resilience in the face of this, the population is over-represented in poor health and wellbeing outcomes [
3,
4]. Many of the health and social inequities experienced by Aboriginal and Torres Strait Islander peoples in Australia are also experienced by other Indigenous populations internationally [
1].
Robust research conducted with Aboriginal and Torres Strait Islander peoples is key to developing programs and policies to improve health and wellbeing [
1,
5,
6]. Holistic views of health are commonly held by Aboriginal and Torres Strait Islander peoples, encompassing a whole-of-life view of the social, emotional, and cultural wellbeing of the community, as well as the individual’s own physical health and wellbeing [
7,
8]. To enable meaningful analysis of Aboriginal and Torres Strait Islander wellbeing, it is therefore critical that studies collect comprehensive data on a broad range of social, cultural, and environmental factors at the individual, family, and community levels. Longitudinal studies are particularly valuable as they enable examination of the complex interplay of factors on wellbeing across the life course, including providing insight into causal pathways [
9,
10].
It is challenging in any population to retain participants in a longitudinal study [
11,
12], which may have implications for the validity of the data and findings. There is some evidence that retention rates are lower for Aboriginal and/or Torres Strait Islander participants compared to non-Indigenous participants in large-scale Australian longitudinal studies [
13‐
16]. For example, retention of Aboriginal participants at the first wave of follow-up in the 45 and Up Study was significantly lower than retention of non-Aboriginal participants (45% versus 61%; age-sex-adjusted participation rate ratio 0.72, 95%CI:0.66,0.78) [
16]. Lower retention rates may reflect additional barriers to research participation for Aboriginal and Torres Strait Islander, compared to non-Indigenous, Australians. Many Aboriginal and Torres Strait Islander communities face a large respondent burden, with frequent invitations to participate in research [
17,
18]. Aboriginal and Torres Strait Islander peoples are more likely than non-Indigenous people to live in hard-to-reach areas, and to be mobile, which can make following and communicating with participants challenging [
9,
18‐
20]. In addition, many Indigenous populations internationally share a history of negative and exploitive research practices, which has had a lasting legacy, including enduring mistrust in research [
9,
21‐
24].
Despite potential challenges recruiting and retaining participants, some longitudinal studies of Aboriginal and Torres Strait Islander children and adults exist [
25‐
27]. In addition to improving understanding of Aboriginal and Torres Strait Islander peoples’ health and wellbeing, these studies provide an opportunity to better understand enablers of research participation by Aboriginal and Torres Strait Islander peoples. This information can inform development of future studies, to improve retention and the validity of data. It can also support the conduct of ethical and respectful research, enabling positive research experiences and outcomes for Aboriginal and Torres Strait Islander peoples.
Previous literature, from the perspective of researchers, has identified contributors to the retention of Aboriginal and Torres Strait Islander participants in longitudinal studies, including the use of Indigenous research methodologies, partnerships and relationships between researchers and community members, flexibility, transparent communication, and cultural sensitivity [
9,
12,
18,
27,
28]. To our knowledge, only one peer-reviewed study has examined reasons for research participation from the perspective of Aboriginal and Torres Strait Islander peoples, and this study was restricted to a small (
n = 8), localised sample [
5]. The current analysis serves to extend this knowledge by exploring perspectives on research participation in a larger, heterogeneous sample. The aims of this mixed methods paper are to quantify the extent of participation in a national longitudinal study of Aboriginal and Torres Strait Islander children,
Footprints in Time, and to understand (qualitatively) the reasons why caregivers participate in the study.
Discussion
Footprints in Time has successfully recruited and retained the current-largest cohort of Aboriginal and Torres Strait Islander children in Australia. More than 8000 surveys were completed across the first six waves of the study, from 2008 to 2013; this represents a contribution of around 12,000 h of time by families of Aboriginal and Torres Strait Islander children. At the 6th annual survey, the study had retained over 70% of the total cohort; the majority (65%, n = 807/1239) of families who participated in Wave 6 had participated in every one of the preceding five surveys. The qualitative data collected in Footprints in Time provides valuable insights as to why the study was successful in retaining families. Namely, participants indicated ongoing commitment to and interest in participating in the study due to perceptions of reciprocity and the development of trust in the study. This was enabled by the participatory approach to developing and implementing the study.
There is no established definition of a satisfactory retention rate, but previous studies of Aboriginal and Torres Strait Islander peoples have described retention rates between 45 and 85% as satisfactory [
12,
16,
19,
25]. The retention achieved in
Footprints in Time (70.4% at Wave 6) matches that of longitudinal studies of the total Australian population conducted by Department of Social Services. The Longitudinal Study of Australian children maintained 72.4% of the baseline sample at the 6th wave of follow-up (
n = 7301/10,090); the study of Household, Income and Labour Dynamics in Australia maintained 72.2% of the baseline sample at the 6th wave of follow up (
n = 12,905/13,969) [
50]. The ability of
Footprints in Time to maintain an equivalent response rate despite additional complexities (including high mobility and respondent burden, and negative research experiences [
12,
16,
19,
51,
52]) suggests effective study methodology and implementation.
The two meta-themes identified in this study, reciprocity and trust/connection, align with key ethical principles for the conduct of research with Aboriginal and Torres Strait Islander peoples [
53‐
55] (and other Indigenous populations internationally, e.g. [
56,
57]), reinforcing the importance and appropriateness of these principles. For example, reciprocity is a core principle for the conduct of ethical Aboriginal and Torres Strait Islander health research, recognising that research participants – not just the researchers – need to gain from the research process. This contrasts common experiences of Aboriginal and Torres Strait Islander research that has ‘taken away’ but not ‘given back’ to the community [
58‐
60].
Reciprocity encompasses two key components: benefit and inclusion [
52,
55]. The first component, benefit, entails the enhancement of capacities, opportunities, or outcomes of interest and value to Aboriginal and Torres Strait Islander peoples [
55]. Respondents described a number of valued individual- or family-level benefits to participating [
61]; this included the identity affirming nature of the study, study incentives, mutual knowledge exchange [
22,
58,
59], and satisfaction inherent to completing the annual surveys. Responses also described anticipated benefits for the broader community over the long term. The emphasis on community, in addition to individual, benefit is consistent with previous research [
5] and with holistic and collective views of wellbeing often held by Indigenous peoples [
7,
8]. Respondents’ views also indicate that they felt included and valued as members of the study, particularly in relation to knowledge exchange. Inclusion in research entails ‘equitable and respectful engagement with Aboriginal and Torres Strait Islander Peoples, their values and cultures in the proposed research’ ([
55] p. 10). This second component of reciprocity is tightly linked to trust, and is facilitated by the study’s ongoing community engagement and feedback processes, and by RAOs’ flexibility and respect for families and community protocols. Establishing study designs in which information is provided to participants, not just taken, is considered an essential component of collaborative, decolonising methodologies [
22,
58,
59].
Connection, particularly as a facilitator of trust, has similarly been identified as a key element of ethical research practice [
5,
62]. Australia’s key guidelines for ethical research with Aboriginal and Torres Strait Islander communities include principles related to generating and maintaining trust and integrity in research [
53‐
55], which can be supported through reciprocity [
62]. Participants contribute their time, body, and/or information to research, trusting the researchers that this will at some point translate to benefit [
62]. As described under reciprocity, our findings suggest that caregivers trust that their participation in the
Footprints in Time study will generate valued benefits for their family, and for the broader community over the long term. Participation in research also requires trust that any data collected will used appropriately. Data about Aboriginal and Torres Strait Islander people have often been misused and have misrepresented participants; literature has documented ongoing concerns about the use of data [
5,
58,
59]. Several participants expressed their confidence that the study would generate ‘good’ or the ‘right’ (not just any) statistics about Aboriginal and Torres Strait Islander children and families. That is, participants placed trust in
Footprints in Time to use their stories to accurately and appropriately portray their lives, informing government and the public about Aboriginal and Torres Strait Islander strengths and needs, cultures, and diversity.
Implicit within the participatory research paradigm is a strength-based research focus, contrasting the dominant deficit discourse permeating health research which focuses on disparities and serves to problematize Indigenous peoples [
7,
63‐
65]. This strength-based approach has been strongly advocated for by community members and organisations, researchers, and increasingly by government [
58,
59,
66‐
71].
Footprints in Time is purposefully designed to have a strength-based focus, as demonstrated by the study’s guiding research question; the focus on positive assets and resources of individuals, families, and communities; and the collection of information about culture [
28]. Aligned with this strength-based research focus, most participant responses to why they participated in the study focused on strength – such as measuring children’s strength and progress, and their future as well as maintaining Aboriginal and Torres Strait Islander culture and improving policy. Another component of strength-based approaches is understanding and valuing diversity [
28,
59,
72], to enable an accurate portrayal of the diverse lives and experiences of Aboriginal and Torres Strait Islander peoples. Multiple participants in our study commented on the importance of the study capturing diversity.
Footprints in Time is currently the only national study of Aboriginal and Torres Strait Islander children [
27]; the diverse sample in this study – in terms of life circumstances, experiences, location, and cultures – is critical to enabling a more accurate portrayal of Aboriginal and Torres Strait Islander life [
17]. We note that the
Footprints in Time study is not intended to be representative of all Aboriginal and Torres Strait Islander families, but rather to provide a snapshot of life in a diverse range of environments [
27].
The building of connection and trust in research needs to be earned and developed over time; it is ‘difficult to establish, but easy to destroy’ ([
62] p. 373). If trust is lost, participants are unlikely to continue to participate in research and share their stories [
62].
Footprints in Time was developed and is conducted in partnership with Aboriginal and Torres Strait Islander communities and organisations [
18,
27,
66]; this has been key to cultivation of participants’ and communities’ trust [
5,
62]. An extensive community consultation process was undertaken during the study development phase, and outcomes of these consultations are reflected in the study design. For example, these consultations have ensured that the study focuses on Aboriginal and Torres Strait Islander community priorities; that it takes a holistic approach, considering the child’s wellbeing in the context of their family, community, and culture; that the study is conducted in a participatory and culturally respectful manner (including employment of Aboriginal and/or Torres Strait Islander interviewers, adherence to community protocols); and that it reflects the diversity of the population [
22,
66,
73,
74]. The design of
Footprints in Time inherently privileges and values Aboriginal and Torres Strait Islander voices and perspectives, which have so often been omitted from research [
21,
75,
76]. Consistent with findings from Guillemin et al. [
5], participants appreciated the opportunity to contribute their story to research and statistics, and to record aspects of their lives that might be lost if left unrecorded. Our findings indicate that this partnership approach and the study’s processes have supported maintenance of trust, and therefore study participation, over many years. Participants’ reflections on their reasons for engaging in the study suggest a sense of reciprocity and trust between families and the study team. Enjoyment in and perceived benefits to participation, including building relationships with the RAOs, were described as a key part of this.
Our findings support, and add strength to, previous literature on research participation and ethical research with Indigenous populations. This study is the first to incorporate perspectives from a large number (n = 160) of Aboriginal and Torres Strait Islander families and shows that Aboriginal and Torres Strait Islander people want to be involved in research when it is done ‘the right way’. While the current analysis focuses on the reasons participants contribute to the Footprints in Time study, there were a number of responses that emphasised the importance of future use of the data provided by participants. In particular, several caregivers indicated that it was important to them that the collected data were used, and used appropriately. Participatory methodologies are intended to not only engage participants in the research development and collection phases, but also in the analysis and implementation phases. Data collection for the Footprints in Time study remains ongoing, and analysis is underway. The next challenge for the study will be to engage in strategies that increase the translation of findings into policy and practice, in a way that is inclusive and relevant to Aboriginal and Torres Strait Islander peoples.
Strengths and limitations
Our study was limited to caregivers of Aboriginal and Torres Strait Islander children who decided to participate in Footprints in Time, and who participated in the 6th annual survey. We therefore lack perspectives (i.e. reasons for non-participation) from persons who chose not to continue to participate in the study, or who joined the study but did not participate in the 6th survey. Further, this research is based on analysis of the primary caregiver’s reasons for participating only; it does not incorporate the study child’s views, or the views of secondary or other caregivers.
Caregiver responses may have been influenced by social desirability bias, particularly as they were collected face-to-face with the RAOs. However, caregivers did have the option to indicate that they did not know why they stayed in the study, or to decline to response; this option was chosen by less than 10% of participants.
This analysis capitalised on free-text collected in a primarily quantitative survey, supporting previous literature on the potential value of these types of data [
77,
78]. A random subset of responses were analysed and we stopped analysing data when saturation was reached, according to our protocol. There is the possibility that responses from participants in our random sub-sample may not be fully representative of all responses from the total sample. However, our sub-sample was selected at random and was generally similar to the overall Wave 6 sample in terms of demographic characteristics. The present analysis provides information based on a Aboriginal and Torres Strait Islander sample substantially larger and more diverse than previously published (
n = 8) [
5].