Characterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled Trial
BackgroundSickle cell disease (SCD) is characterized by severe acute pain episodes as well as risk for chronic pain. Digital delivery of SCD pain self-management support may enhance pain self-management skills and accessibility for youth. However, little is known about how yo...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
JMIR Publications
2022-08-01
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| Series: | Journal of Medical Internet Research |
| Online Access: | https://www.jmir.org/2022/8/e40096 |
| _version_ | 1797734786315321344 |
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| author | Chitra Lalloo Fareha Nishat William Zempsky Nitya Bakshi Sherif Badawy Yeon Joo Ko Carlton Dampier Jennifer Stinson Tonya M Palermo |
| author_facet | Chitra Lalloo Fareha Nishat William Zempsky Nitya Bakshi Sherif Badawy Yeon Joo Ko Carlton Dampier Jennifer Stinson Tonya M Palermo |
| author_sort | Chitra Lalloo |
| collection | DOAJ |
| description |
BackgroundSickle cell disease (SCD) is characterized by severe acute pain episodes as well as risk for chronic pain. Digital delivery of SCD pain self-management support may enhance pain self-management skills and accessibility for youth. However, little is known about how youth with SCD and their caregivers engage with digital health programs. iCanCope with pain is a digital pain self-management platform adapted for youth with SCD and caregivers through a user-centered design approach. The program was delivered via a website (separate versions for youth and caregiver) and mobile app (youth only).
ObjectiveWe aimed to characterize patterns of user engagement with the iCanCope with SCD program among youth with SCD and their caregivers.
MethodsA randomized controlled trial was completed across multiple North American SCD clinics. Eligible youth were aged 12-18 years, diagnosed with SCD, English-speaking, and experiencing moderate-to-severe pain interference. Eligible caregivers were English-speaking with a child enrolled in the study. Dyads were randomized to receive the iCanCope intervention or attention-control education for 8-12 weeks. This report focused on engagement among dyads who received the intervention. User-level analytics were captured. Individual interviews were conducted with 20% of dyads. Descriptive statistics characterized quantitative engagement. Content analysis summarized qualitative interview data. Exploratory analysis tested the hypothesis that caregiver engagement would be positively associated with child engagement.
ResultsThe cohort included primarily female (60% [34/57] of youth; 91% [49/56] of caregivers) and Black (>90% of youth [53/57] and caregivers [50/56]) participants. Among 56 dyads given program access, differential usage patterns were observed: both the youth and caregiver engaged (16/56, 29%), only the youth engaged (24/56, 43%), only the caregiver engaged (1/56, 2%), and neither individual engaged (16/56, 29%). While most youth engaged with the program (40/57, 70%), most caregivers did not (39/56, 70%). Youth were more likely to engage with the app than the website (85% [34/57] versus 68% [23/57]), and the most popular content categories were goal setting, program introduction, and symptom history. Among caregivers, program introduction, behavioral plans, and goal setting were the most popular content areas. As hypothesized, there was a moderate positive association between caregiver and child engagement (χ21=6.6; P=.01; ϕ=0.34). Interviews revealed that most dyads would continue to use the program (11/12, 92%) and recommend it to others (10/12, 83%). The reasons for app versus website preference among youth were ease of use, acceptable time commitment, and interactivity. Barriers to caregiver engagement included high time burden and limited perceived relevance of content.
ConclusionsThis is one of the first studies to apply digital health analytics to characterize patterns of engagement with SCD self-management among youth and caregivers. The findings will be used to optimize the iCanCope with SCD program prior to release.
Trial RegistrationClinicalTrials.gov NCT03201874; https://clinicaltrials.gov/ct2/show/NCT03201874 |
| first_indexed | 2024-03-12T12:49:31Z |
| format | Article |
| id | doaj.art-6007b8f20aff4233bbdabc99fb312bc1 |
| institution | Directory Open Access Journal |
| issn | 1438-8871 |
| language | English |
| last_indexed | 2024-03-12T12:49:31Z |
| publishDate | 2022-08-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | Journal of Medical Internet Research |
| spelling | doaj.art-6007b8f20aff4233bbdabc99fb312bc12023-08-28T22:58:57ZengJMIR PublicationsJournal of Medical Internet Research1438-88712022-08-01248e4009610.2196/40096Characterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled TrialChitra Lalloohttps://orcid.org/0000-0003-2794-7061Fareha Nishathttps://orcid.org/0000-0001-7166-2034William Zempskyhttps://orcid.org/0000-0001-7162-0002Nitya Bakshihttps://orcid.org/0000-0002-0876-9506Sherif Badawyhttps://orcid.org/0000-0002-4739-265XYeon Joo Kohttps://orcid.org/0000-0001-6762-0683Carlton Dampierhttps://orcid.org/0000-0002-7738-2620Jennifer Stinsonhttps://orcid.org/0000-0002-9969-8052Tonya M Palermohttps://orcid.org/0000-0001-6036-6715 BackgroundSickle cell disease (SCD) is characterized by severe acute pain episodes as well as risk for chronic pain. Digital delivery of SCD pain self-management support may enhance pain self-management skills and accessibility for youth. However, little is known about how youth with SCD and their caregivers engage with digital health programs. iCanCope with pain is a digital pain self-management platform adapted for youth with SCD and caregivers through a user-centered design approach. The program was delivered via a website (separate versions for youth and caregiver) and mobile app (youth only). ObjectiveWe aimed to characterize patterns of user engagement with the iCanCope with SCD program among youth with SCD and their caregivers. MethodsA randomized controlled trial was completed across multiple North American SCD clinics. Eligible youth were aged 12-18 years, diagnosed with SCD, English-speaking, and experiencing moderate-to-severe pain interference. Eligible caregivers were English-speaking with a child enrolled in the study. Dyads were randomized to receive the iCanCope intervention or attention-control education for 8-12 weeks. This report focused on engagement among dyads who received the intervention. User-level analytics were captured. Individual interviews were conducted with 20% of dyads. Descriptive statistics characterized quantitative engagement. Content analysis summarized qualitative interview data. Exploratory analysis tested the hypothesis that caregiver engagement would be positively associated with child engagement. ResultsThe cohort included primarily female (60% [34/57] of youth; 91% [49/56] of caregivers) and Black (>90% of youth [53/57] and caregivers [50/56]) participants. Among 56 dyads given program access, differential usage patterns were observed: both the youth and caregiver engaged (16/56, 29%), only the youth engaged (24/56, 43%), only the caregiver engaged (1/56, 2%), and neither individual engaged (16/56, 29%). While most youth engaged with the program (40/57, 70%), most caregivers did not (39/56, 70%). Youth were more likely to engage with the app than the website (85% [34/57] versus 68% [23/57]), and the most popular content categories were goal setting, program introduction, and symptom history. Among caregivers, program introduction, behavioral plans, and goal setting were the most popular content areas. As hypothesized, there was a moderate positive association between caregiver and child engagement (χ21=6.6; P=.01; ϕ=0.34). Interviews revealed that most dyads would continue to use the program (11/12, 92%) and recommend it to others (10/12, 83%). The reasons for app versus website preference among youth were ease of use, acceptable time commitment, and interactivity. Barriers to caregiver engagement included high time burden and limited perceived relevance of content. ConclusionsThis is one of the first studies to apply digital health analytics to characterize patterns of engagement with SCD self-management among youth and caregivers. The findings will be used to optimize the iCanCope with SCD program prior to release. Trial RegistrationClinicalTrials.gov NCT03201874; https://clinicaltrials.gov/ct2/show/NCT03201874https://www.jmir.org/2022/8/e40096 |
| spellingShingle | Chitra Lalloo Fareha Nishat William Zempsky Nitya Bakshi Sherif Badawy Yeon Joo Ko Carlton Dampier Jennifer Stinson Tonya M Palermo Characterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled Trial Journal of Medical Internet Research |
| title | Characterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled Trial |
| title_full | Characterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled Trial |
| title_fullStr | Characterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled Trial |
| title_full_unstemmed | Characterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled Trial |
| title_short | Characterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled Trial |
| title_sort | characterizing user engagement with a digital intervention for pain self management among youth with sickle cell disease and their caregivers subanalysis of a randomized controlled trial |
| url | https://www.jmir.org/2022/8/e40096 |
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