Ambulatory Assessment May Be an Answer to Engaging ‘Hard to Reach’ Youth in Research
Some ethnic and demographic groups are difficult to recruit for research studies. Mobile devices and other new technologies can eliminate some barriers, especially when used mindfully.
Diversity in adolescent research is a cornerstone value of The Society for Research on Adolescence. Although great strides toward inclusion are being made, Indigenous youth in particular remain underrepresented in developmental studies, in both the northern and southern hemispheres. In the global south, Australian Indigenous youth (i.e. Aboriginal and Torres Strait Islander youth) are some of the most at risk for psychological distress, yet the least studied.
With its growing applicability, Ambulatory Assessment (AA) represents a promising method for researchers to engage with Aboriginal and Torres Strait Islander youth. AA allows youth to report on psychologically-meaningful phenomenon (e.g. stressors, emotions) as they unfold in their day-to-day life. Globally, scholars are recognising a need for innovative techniques for collecting and evaluating health outcomes data in traditionally ‘hard to reach’ groups. AA also has a substantial history in cross-cultural research.
However, the potential of using AA with Australian Indigenous youth is yet to materialize. Promisingly, digital technology via smartphone applications is being used to target Indigenous youth suicide prevention, self-management of alcohol and drug use, and parenting. In our own AA work, just under 8% of adolescents in identified as Aboriginal or Torres Strait Islander, which is well above the national Indigenous population rate of 3.3%. These figures indicate the feasibility of AA with Indigenous youth.
Contemporary tensions between researchers and Australian Indigenous community members, rooted in historical harms, underlie the current under presentation of Indigenous youth in adolescent health research. AA, delivered via smartphone technology, has the potential to reduce these barriers in several ways;
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Researcher perceived as untrustworthy. Researchers can be perceived as untrustworthy, given harmful ways in which Aboriginal and Torres Strait Islander Australians have been treated in scientific and anthropologic research. Particular concerns arise around how data will be handled. This concern is far from unique to Indigenous Australians; minority groups globally report a jaggered history with Western research. Enhancing privacy of youths’ data can assist in building trust between youth and researchers. In AA studies, adolescents can be encouraged to enter passwords on smartphones to ensure privacy of their data (although see Odgers, 2019 for a discussion). Data entered via smartphones is also typically sent to an online server and not stored on the actual device, thus enhancing youths’ privacy. Given tensions around trust, it is vital for researchers to begin Indigenous youth research with prior Written Research Agreements which outline to youth how their data will be used. This will be particularly important for AA methods which collect ‘passive data’.
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Perceived lack of privacy from family/community members. In my work in the Indigenous mental health sector, I often hear that youth do not want to attend Indigenous-specific services over fear of family or community members finding out their confidential information. Again, the discretion provided by smartphones can be leveraged here, with youth being encouraged to enter health information that is sent directly to the researcher This eliminates the need for a youth to relay sensitive information verbally, which could be over heard by family or community members. Researchers can also include links to health resources as part of AA protocols. For example, researchers can provide hotline numbers at the end of AA surveys that ask about daily mood and mental health symptoms. Youth can also be encouraged to put a personalised cover on their phone, apply different background seatings, and set unique passwords as a way to personalise their phone and create a sense of device ownership.
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Unfamiliarity with (Western) research processes. A familiar call among Aboriginal and Torres Strait Islander community members is that research is done on us, not with us. Therefore, although youth may have been involved in western scientific research, they may be none the wiser of the research process. As much as AA allows researchers to observe the lived experiences of adolescent life, the method also allows youth participants to ‘stare back’ and learn about the research process. In AA, youth are actively involved in creating and curating their daily experience by way of providing up-to-date reports of their experiences. They can then be encouraged ‘follow-the trail’ of their data, understanding how data becomes de-identified, analysed, and eventually presented. In my experience, youth show great interest in the data we collect via AA, arguably because we use tools (smartphones) with which they were already familiar. Such familiarity with data collection devices may serve to break down barriers between youth and researchers.
Notably, time and financial constraints are often touted as reasons for underrepresentation of Indigenous youth in research. Researchers could be tempted to leverage the digital nature of AA to, for instance, remotely deploy daily surveys, particularly to youth living in a different geographical setting. However, researchers should not mistake the digital nature of modern-day AA as equating to a less resource intensive method. Indeed, scholars have discussed the significant time, labour, and financial investment AA requires. Further, online recruitment of adolescents into AA studies has proven difficult. Importantly, working with Indigenous youth on overcoming the above barriers does require investment. Researchers must also to remember the importance of ‘human technology’; in our AA study of disadvantaged adolescents, we found that daily school visits, ‘hanging out’ with youth in their natural settings, and forming genuine connections with youth participants was vital for engagement.
AA offers multiple promises for furthering our understanding of Indigenous adolescents’ development. It is a unique way to capture the lived experience for this under-represented group, thus prefacing their perspectives. Consistent with SRA’s mission statement, an understanding of the daily emotional and psychological wellbeing of Australian Indigenous youth will enhance understanding of adolescent development in a globalized world. To this end, AA offers a unique methodology which, when used thoughtfully, can help scholars overcome historically-based barriers to inclusion of Indigenous youth in research.
Dr Bep Uink, Kulbardi Aboriginal Centre, Murdoch University, Perth WA, Australia
Bep Uink (MAppPsy(Clinical), Ph.D.) is a Noongar woman from Western Australia and a Research Fellow at Kulbardi Aboriginal Centre, Murdoch University. Her research agenda focuses on articulating how socially determined disadvantage impacts the health and wellbeing of young people, both Indigenous and non-Indigenous and how social systems (e.g. higher education) can support peoples’ wellbeing. She is currently a co-investigator on an NHMRC funded project examining the intersection of cultural identity and LGBTQA+ status among Indigenous youth (www.rainbowknowledge.org).