Choosing Your Age Group

Deciding on the age range of adolescent and youth participants to be involved in a research project or health intervention will be influenced by the anticipated level of involvement, their level of maturity, and/or clinical requirements of the study. There are practical issues pertinent to each age category that you can implement when working towards a meaningful involvement of young people in health research.

Level of involvement:

A meaningful involvement in research is defined as carrying out research ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. Adolescents may simply be the participants of the study (i.e. limited involvement) or they may be involved at the level of research design, research oversight, peer education and recruitment, results dissemination and/or continuous adherence programmes depending on the research protocol.

Level of maturity:

There are different age groups with different levels of maturity along the adolescent and youth developmental lifecycle.
Health research that requires a significant input from the youth, like discussing the barriers to accessing sexual and reproductive health services will need to assess the ability of their chosen age-group to articulate these barriers, share their experiences and make recommendations for better programming.
Older age groups may be better suited for such work.

Recognition of involvement:

There are different age-appropriate tokens for recognizing the role that adolescents are playing in the research. One of the key considerations in providing incentives to research participants is that large incentives like a large value of food vouchers may be considered coercive and thus undermine the autonomous decision-making which then compromise the scientific integrity of research. In instances where older adolescents are involved in peer education, recruitment and also participate in the study, it is appropriate to remunerate, write a reference letter for good conduct, and or to provide gift vouchers.
Tokens should not be large enough to be considered undue inducement.
Tokens or plans to use tokens as recognition should be reviewed by the research ethics committee.
For both young and old adolescents it is common to offer study T-shirts, caps, bags and stationery items like USB sticks and pens.

Age-related clinical requirements:

Age selection in clinical research is influenced by what the trial is for, the phase of the clinical research, and what other studies may have already been completed.

Legal requirements of your study:

Know the age of consent to research participation and to the activities you are including (e.g. HIV testing). This is not a barrier but the need to acquire parental consent may present additional logistical barriers or may be detrimental to the research itself (e.g. adolescents with high sexual risk activity or those that use substances might not be happy to get their parents involved as this could lead to loss of privacy).
You might then choose the age range as starting from the age at which adolescents can self-consent to participate.

Have you done this?

These questions will all need to be answered in the ethics application.

Clarify the reasons for selecting a particular age category of the youth
Decide what will the involvement of the selected age group include and require
Consider if the outcome of the research be different for the different age groups
Find out how the selected age group would like to be involved in research

Why it is important to include adolescents of all ages in research– benefits?

The general benefit of participating in research is to contribute towards the development of evidence-based information necessary for the development of new drugs and drafting of new policies and programmes. It is an important opportunity for adolescents to have a voice in the design and development of policies and programmes that are meant to serve them directly.
People of all age groups who participate in clinical trialstend to receive enhanced health services during participation in trials.
Participants may also receive reimbursement for participation, but this should be in line with the time they contribute to the project and avoid inadvertently providing a perverse incentive.
Reimbursement should not be considered a benefit or an inducement.
Research protocols give a clear directive about benefits and or monetary incentives given to research participants, especially to people younger than 16 years.
Research that includes a participatory aspect that allows adolescents to have a say in the design, progress, decision-making, and interpretation of the results may provide additional opportunities for adolescents to learn about the research progress and gain early acquisition of basic research skills.

Avoid open-ended age definitions:

There is little to no guidance on how to choose the right age category of adolescents to participate in research. There are some guidelines on terms which are often used to describe different age groups.

“For an individual of any age, appropriate terms are “person,” “individual,” and so on. In general, avoid using “males” and “females” as nouns; instead use “men” and “women” or other age- and appropriate words. “Males” and “females” are appropriate when groups include individuals with a broad age range (e.g., “males” to describe a group that includes both boys and men).
For an individual aged 12 years and younger, appropriate terms are “infant” (for a very young child), “child,” “girl,” “boy,” “transgender girl,” “transgender boy,” “gender-fluid child,” and so on.
For an individual aged 13 to 17 years, appropriate terms are “adolescent,” “young person,” “youth,” “young woman,” “young man,” “female adolescent,” “male adolescent,” “agender adolescent,” and so on.
For an individual aged 18 years and older, appropriate terms are “adult,” “woman,” “man,” “transgender man,” “trans man,” “transgender woman,” “trans woman,” “genderqueer adult,” “cisgender adult,” and so on”.

Other things to consider:

Participation in research can be exciting as health research brings health services closer to low-income settings, reduces time and travel costs to the research site and may make community education and buy-in for the research easier. However, there are different considerations for the different age groups which may require preparations and planning for coming into and leaving the research site.

Safety protocols:

Establish safety protocols before confirming the research site: The safety of the research staff and participants is very important. Everyone involved in research needs to participate freely knowing that their safety is not compromised.
Physical and psychological safety netting is important.
Physical safety will include having trained facilitators in adolescent-friendly services, knowledge of and clear communication of reporting guidelines.
Psychological safety will include ensuring that the environment is safe for interpersonal risk-taking – such as speaking up – through role clarity and peer support.
Be aware of other physical safety risks that need to be considered above and beyond the risks associated with the intervention. For example, in South African schools all members of the study team who interact with learners need national clearance to state they are not on the sex offenders list and police clearance.

Travel protocols:

The younger research participant will need additional parental consent and support to travel to the research site. There may be travel costs and incidentals that need to be borne into the research protocol. In other settings travel safety may hinder accessing the research sites and may deter parents from granting permission to their children to participate in research.

Ability to participate:

A range of qualitative research methods are recommended for eliciting effective participation of younger research participants (12 – 15 years). Visual aid methods have helped explore quality of life issues for children living in less advantaged communities. Language used to describe the study is important– not just multiple languages but using simple language in study documents that is both:
At an appropriate reading level for the participant
In an appropriate tone for both the research and the adolescent (there is a balance)

This is especially important in the consent process where in order for it to be truly informed consent, the language must be clear. Forms do not always have to be translated, but this needs to be checked in the community to see what the participants prefer and what language they are used to reading in.

See Qualitative work with Adolescents.

See Adolescent friendly study material.

BY YOLISWA NTSEPE (MA, PhD)
ADOLESCENT PROGRAMMES MANAGER

UPDATED NOV 22, 2023

TABLE OF CONTENTS:

REFERENCES & ADDITIONAL RESOURCES:

APA style and grammar guidelines.

community-based research:
https://www2.unbc.ca/sites/default/files/sections/safety/safetyguideforconductingcommunitybasedresearchdecember312013.pdf