Where Do Adults Fit In?

The involvement of adults, who are parents, guardians, caregivers to adolescents that are under 18 years of age, is required in both clinical and socio-behavioural health research at various stages depending on the nature of research. Here are some ideas on how best to engage adults in adolescent and youth research, even knowing that adult involvement may discourage full and effective participation of adolescents in some research studies.

Informed consent

The process of seeking and obtaining permission from adults for young adolescents to participate in research is clearly defined and documented in the informed consent section because of the ethical-legal requirements in research. However, an emphasis should be on the quality of information given to the adults to enable them to grant a better-informed consent for the child to participate in the study.

Adults who perceived the information about the research as not enough, but nonetheless gave consent for their adolescents to participate in the study often show reluctance and give little to no support to the entire research process.

What is the role of the adults in adolescent research?

In instances where the adolescent is younger or is sick and the research serves as a medical intervention, adults play a significant role. Also, in the instance where the adolescent is in trouble with the law or is using drugs, researchers may need a greater involvement of adult family members in the study.

Evaluate if the adult involvement improves the participation of the young person and whether or not it adds any value to the research, such as bringing the participant on time to the research site or there are medical and or psychological outcomes of the research that need to be conveyed to adults.

Some adult roles:

  • Adults play the role of taking the young adolescent to the research site.
  • Adults are able to interpret the benefits and implications of medical interventions and encourage the young persons to adhere to the research.
  • Research assists adults to learn about mental and emotional challenges that the adolescents were unable to share directly
  • Group information sessions are often facilitated to give adults a broad understanding of the research and health intervention before they can each get individual meetings that lead to giving informed consent.

Researchers can also give periodic updates to adults about the progression of the research and the involvement of their adolescent child.

Professionals like physicians, psychologists and field researchers who are directly observing the physical and psychological developments of the adolescents during the interventions may find it overwhelming to give feedback to adults. Tips on how to effectively engage the adults in research:

  • Convene group meetings for parents / guardians at the beginning of the study
  • Provide timeous feedback to ensure continued support for the adolescent when at home
  • Send regular research updates through community relevant information platforms like texts / newsletters
  • Invite adults to share developmental concerns observed since the beginning of the research

 

Meet the Researchers” is a recommended method for public engagement that public health researchers can use when trying to improve communication between the researchers and the community.

The benefits are that:

  • Communities are kept abreast about research developments in their community
  • Engagements are informal, relaxed and in small groups to stimulate community involvement
  • Breaks down the barriers between researchers and study population

Other things to consider:

It is important to remember that ethical approval to waive parental consent can be applied for in some studies as parental involvement is not always necessary or may pose a barrier to adolescent participation. Circumstances where parental waiver may be suitable include, for example:

  • Non-therapeutic research and low to minimal risk; where seeking parental consent for participation would require disclosure of certain information to parents of personal medical information (e.g., HIV status, sexuality, sexual activity), which would hinder adolescent participation and is not necessarily in their best interests.

However, because persons under 18 years of age are considered minors in many countries and research settings, it is important to ensure that the research protocol satisfies the following conditions:

  • The privacy and confidentiality of the adolescent will be respected at all times
  • The informed consent of each adolescent will be obtained
  • Researchers encourage the adolescent to seek the support of a parent / guardian before participating
  • A professional who is not involved with the research should meet with the adolescent and confirm his or her ability to give informed consent. This includes the adolescent’s cognitive ability, ability to make reasonable judgments, and their ability to be responsible for compliance with the requirements of the study.

BY YOLISWA NTSEPE (MA, PhD)
ADOLESCENT PROGRAMMES MANAGER

UPDATED NOV 22, 2023

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REFERENCES & ADDITIONAL RESOURCES:

Developing adolescents: A reference for professionals
American Psychological Association.
(2021, November 14)
https://www.apa.org/topics/teens/developing-adolescents-professionals-reference 

Meet the researchers: an alternative method of engaging patients with research in mesothelioma.
Hill, K., Portman, M. & Tabi, Z. Res Involv Engagem 4, 33 (2018).
https://doi.org/10.1186/s40900-018-0119-x

Research with adolescents: Parental involvement required?
Holder, A.R., 2008. Journal of Adolescent Health, 42(1), pp.1-2.
https://www.jahonline.org/article/S1054-139X(07)00469-7/fulltext#articleInformation