Study finds child engagement higher than caregiver engagement with SCD’s digital self-management program

According to a study published in the Journal of Research of Medical Interest reported.

According to the authors, this study is one of the first to apply digital health analytics to characterize patterns of engagement in self-management of SCD among youth and caregivers.

The iCanCope With Pain program is a digital pain self-management platform provided via a website and a mobile app, the app is only used by the child with SCD themselves, but the website is accessible both the child and the caregiver. The platform was originally developed for young people with chronic pain and has been adapted for young people with SCD through a user-centered design approach.

While the iCanCope With SCD program is currently undergoing efficacy testing in a multicenter randomized clinical trial, this report has focused on engagement with the digital intervention during the trial.

To assess patterns of engagement with the program, the authors included 57 children and 56 caregivers in the study, establishing 56 dyads and 1 young participant only. All children and caregivers spoke English, and all children experienced moderate to severe pain interference.

The young participants were between the ages of 12 and 18, almost all in middle school or high school. Additionally, 47/57 (82%) said they use a smartphone daily. The study cohort was predominantly female, representing 60% of youth and 91% of enrolled caregivers. Additionally, more than 90% of youth and caregivers were black. More than half of the dyad households included 1 or 2 children under the age of 18, and the majority had an annual family income of less than $75,000.

Dyads were randomized to receive either the digital intervention or attentional control education for 8 to 12 weeks. Although part of a larger study, this report focused on engagement among those who received the intervention.

Of 56 dyads, the authors found that the youth and caregiver participated in 16 (29%) of them, but only the youth participated in 24 (43%) of them. There was only one dyad where only the caregiver participated in the program, but a large number of 16 (29%) of the dyads saw no need for either party.

Of the 57 youth, 40 (70%) participated in the program, while only 17/56 (30%) of caregivers participated.

The authors conducted interviews with 20% of participating child-caregiver dyads. Despite moderately low caregiver engagement overall, most surveyed dyads said they would continue to use the SCD pain self-management program (92%) and would recommend the program to others (83%) .

The authors also found that young people with sickle cell disease were more likely to participate in the overall program than their caregivers and were more likely to use the app than the website.

“Reasons for the preference of apps over websites among young people were ease of use, acceptable time commitment, and interactivity,” the authors mentioned. “Barriers to caregiver engagement included high time load and limited perceived relevance of content.”

The authors noted that differences in scope of intervention, definitions of engagement, study design, clinical population, and type of technology may account for different patterns of engagement in other studies. similar. This includes research on other SCD digital interventions, the SCD population in general, and the pediatric population as a whole.

“The literature suggests that treatment adherence in young people with sickle cell disease may be affected by forgetfulness, side effects of pharmacological interventions (e.g., nausea, racing heart, and taste aversion), questioning the effectiveness of treatment and the desire to be ‘normal’, and some of these factors may have a similar impact on adherence to digital health interventions,” they wrote, citing previous research. “Previous literature also suggests that socio-demographic factors may impact engagement with digital interventions, highlighting lower rates of engagement among racial or ethnic minorities and those of low socioeconomic status.”


Lalloo C, Nishat F, Zempsky W, et al. Characterizing user engagement with a digital intervention for pain self-management in young people with sickle cell disease and their caregivers: a sub-analysis of a randomized controlled trial. J Med Internet Res. 2022;24(8):e40096. doi:10.2196/40096

Ryan H. Bowman