Involving patients' perspective in the development of an internet- and mobile-based CBT intervention for adolescents with chronic medical conditions: Findings from a qualitative study

Abstract

Objective A user-centered approach is critical for increasing the adherence to and effectiveness of an internet- and mobile-based intervention program. Therefore, potential future intervention users were involved in the development of an internet- and mobile-based cognitive behavioral therapy program (iCBT) for adolescents and young adults (AYA) with chronic medical conditions and comorbid symptoms of anxiety or depression. We aimed to identify challenges and coping strategies of the intended target group, as well as their needs and preferred intervention characteristics for an iCBT program. Methods Twenty AYA (aged 14–20, 60% females) with either type 1 diabetes (55%), juvenile idiopathic arthritis (25%) or cystic fibrosis (20%) were interviewed in condition-specific focus groups (4–11 participants per group) either via videoconferencing or face-to-face. Transcript verbatim data was analyzed using content analysis. Results Frequently reported disease-specific burdens were among others fear of disease progression, non-acceptance of disease and stressful incidents related to and aversions against medical therapy. Most frequently reported coping strategies included, seeking social support and accepting the disease. Recommendations for the content of an iCBT for comorbid symptoms of anxiety and depression comprised: dealing with disease-related fears and getting advice on health-promoting lifestyles. iCBT characteristics considered preferable by participants were: providing individual feedback by a real-person; implementation of a feature to monitor treatment progress; youthful and varied content presentation; time per session not exceeding 1 h; non-involvement of parents. A mobile-based reminder feature was considered useful, and individual tailoring and self-determination of iCBT content was considered desirable. Conclusions The findings highlight important patient perspectives and age-specific recommendations which can help design more optimal iCBT interventions for AYA with chronic medical conditions.

Feasibility and potential efficacy of a guided internet- and mobile-based CBT for adolescents and young adults with chronic medical conditions and comorbid depression or anxiety symptoms (youthCOACHCD): a randomized controlled pilot trial

“…However, further studies are required regarding the potential effectivity of such peer support features [ 69 ]. Participants of the focus groups which were conducted before the development of youthCOACH CD did not reach consent whether they would like such peer support features [ 27 ]. As an interesting additional finding, the unguided version of youthCOACH CD as provided to the wait list control group resulted in an intervention uptake rate of only 53% (uptake rate in IG: 73%) and a completer rate of 7% (completer rate in IG: 60%).…”

“…Another important aspect in regard to adherence might be parental involvement [ 77 , 78 ]. In our focus groups study, AYA pointed out that they would prefer not to involve their parents [ 27 ]. However, youthCOACH CD targets a wide age range of AYA.…”

“…Stories of three fictional AYA with a chronic condition and symptoms of depression and anxiety are implemented in every module in order to facilitate identification. Intervention content and design were informed by focus groups conducted with potential users of youthCOACH CD [ 27 ].…”

“…In order to develop a user-centered iCBT program and thus to increase the effectiveness of and engagement with youthCOACH CD, the intervention program is developed in three steps. In a first step, qualitative research is conducted to determine concerned AYA needs and preferences for the program [ 27 ]. Second, a feasibility trial is conducted to ensure the acceptance, feasibility and potential efficacy of youthCOACH CD .…”

Intervenções em TCC baseada na internet com adolescentes: uma revisão sistemática

“…Within internet-based CBT's field, there is an ongoing debate about the relevance of therapist contact on this kind of intervention (Farrer et al, 2011). In one study about adolescents' perspective on online interventions, feedback and contact with professionals were considered to be essential for treatment (Geirhos et al, 2021). Therapeutic guidance seems to be a relevant moderator factor about internet-based psychotherapies efficacy (Wozney et al, 2017).…”