Participatory Research Methods for Intervention Development: Collaborations with Youth in Foster Care

Computer- and mobile phone-based interventions are on the rise, addressing myriad physical and mental health issues, including medication adherence, alcohol and drug use, and tobacco cessation. These technologies offer many advantages compared with face-to-face interventions, most notably delivering evidence-based content reliably, flexibly, and effectively. In addition, these methods can increase the likelihood of honest reporting and can be tailored to the needs of each individual research participant or client. Such tailoring, however, can be difficult to develop because researchers often make assumptions about participant/client needs.  Equivalence should not be assumed across intervention methods; that is, while both computers and mobile phones can deliver evidence-based content, content delivery may not involve a one-to-one “translation” across modalities.

In a study to develop and test an indicated preventive intervention to decrease alcohol and drug use among youth exiting the foster care system, participants receive a computerized screening and brief intervention, as well as six months of personalized SMS text messaging dynamically tailored to their readiness to change. Participants submit weekly readiness to change scores which are used to inform the content of their daily text messages. In particular, as individuals’ readiness increases, the content of their messages moves on a continuum from developing discrepancy to advice and planning.

Exclusive development of these text messages by research staff, however, presents the aforementioned potential for translation problems. To address this issue, participants (n = 24) – as part of focus groups on intervention development – complete a card-sorting task. They are each given 20 potential text messages addressing various aspects of mitigating substance use across the spectrum of readiness to change, as well as five blank index cards. They are then instructed to individually categorize the cards into three piles: good, OK, and bad messages. At the same time, participants generate their own text messages on the five blank cards. Finally, participants are asked to rate their favorite and least favorite staff-generated message and explain why these were chosen.

Many adolescents are reluctant to engage in relationships with healthcare providers, particularly concerning substance use. Given their history, it is understandable that these connections could be even more challenging for youth in the foster care system. Thus, innovative means are required. Participatory methods such as these can serve as a gateway to meaningful connections with adolescents. In addition, incorporating youth language (i.e., the messages they create) substantially increases the relevance of intervention content.