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Long-standing knee pain is one of the most common reasons for adolescents (aged 10-19 years) to consult general practice. Generally, 1 in 2 adolescents will continue to experience pain after 2 years, but exercises and self-management education can improve the prognosis. However, adherence to exercises and self-management education interventions remains poor. Mobile health (mHealth) apps have the potential for supporting adolescents’ self-management, enhancing treatment adherence, and fostering patient-centered approaches. However, it remains unclear how mHealth apps should be designed to act as tools for supporting individual and collaborative management of adolescents’ knee pain in a general practice setting.
The aim of the study was to extract design principles for designing mHealth core features, which were both sufficiently robust to support adolescents’ everyday management of their knee pain and sufficiently flexible to act as enablers for enhancing patient-parent collaboration and shared decision-making.
Overall, 3 future workshops were conducted with young adults with chronic knee pain since adolescence, parents, and general practitioners (GPs). Each workshop followed similar procedures, using case vignettes and design cards to stimulate discussions, shared construction of knowledge and elicit visions for mHealth designs. Young adults and parents were recruited via social media posts targeting individuals in Northern Jutland. GPs were recruited via email and cold calling. Data were transcribed and analyzed thematically using NVivo (QSR International) coding software. Extracted themes were synthesized in a matrix to map tensions in the collaborative space and inform a conceptual model for designing mHealth core-features to support individual and collaborative management of knee pain.
Overall, 38% (9/24) young adults with chronic knee pain since adolescence, 25% (6/24) parents, and 38% (9/24) GPs participated in the workshops. Data analysis revealed how adolescents, parents, and clinicians took on different roles within the collaborative space, with different tasks, challenges, and information needs. In total, 5 themes were identified:
An mHealth app for treating adolescents with knee pain should be designed to accommodate multiple users, enable them to shift between individual management decision-making, take charge, and engage in role negotiation to inform shared decision-making. We identified 3 silver-bullet principles for consolidating mHealth core features as enablers for negotiation by supporting patient-GP collaboration, supporting transitions, and cultivating the parent-GP alliance.
Approximately one-third of adolescents (aged 10-19 years) experience long-standing musculoskeletal pain [
Mobile health (mHealth) apps are promising tools for improving the treatment of adolescents with everyday management needs owing to chronic conditions [
Self-management is essential for achieving recovery from knee pain [
This study aimed to identify principles for designing mHealth core features, which are sufficiently robust to support adolescents’ everyday management of their knee pain and sufficiently flexible to act as enablers for supporting patient-parent-GP collaboration and shared health decision-making.
Action research was included as a methodological framework to guide our application of methods, analysis, and knowledge production [
The study protocol was submitted for revisions to the regional board of research ethics in Northern Jutland, and they ruled that the project was permitted to continue without registration based on national guidelines.
We included 3 study populations that were separated in terms of their roles in the clinical setting—patients, clinicians, or next of kin. Young adults (aged 18-25 years) with long-standing recurring knee pain during adolescence (emerging age 10-15 years; duration >6 months) were included into study population 1. The decision to include young adults was rooted in how self-management skills are developed over time [
We drew upon the future workshop as described by Jungk and Mullerts [
To facilitate this transition between the workshop phases, a generative activity was designed, which used case vignettes [
Overview of the future workshop phasesa.
Timeline and phases | Brief explanation about the phases | ||
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Preparation | Organizers and facilitators agree on the theme, invited participants, methods, location, locales, rules, and timetables of the future workshop. | |
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Critique | Participants investigate the problem through criticism and brainstorming. Challenges and ideas are noted and organized into themes. | |
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Fantasy | Participants create a picture of a utopic future. Brainstorming and creative techniques are included to suspend criticism and extract ideas. | |
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Implementation | Participants organize, evaluate, and develop ideas related to practicality and ease of implementation. Action plans are developed. | |
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Follow-upb | Action plans are monitored, changes are performed, and new future workshops are planned to address challenges to implementation. |
aPhases and descriptions are adapted from a paper by Vidal et al [
bThe follow-up phase is not included in this paper.
A case vignette (
An inspiration card exercise was developed to encourage dialogue and cocreation and guide participants through the future workshops’ 3 phases (
Participants in each group were provided with other artifacts such as post-it notes in 3 colors (red, yellow, and green), pens, and pen markers, which participants could use to brainstorm ideas; organize emerging themes to visualize conceptual relations; and engage in a shared evaluation of themes, concepts, and novel ideas. To support participants in bridging the gap between ideation and visioning (future workshop phases 2 and 3), the facilitators advised groups to rearrange, explore, and prioritize their ideas by reorganizing the design cards before engaging in the work of phase 3.
Special care was taken to ensure that all 3 workshops followed the same procedure to heighten the compatibility of the extracted insights and visions. Workshops 1 and 2 (young adults and parents) were conducted at a local community center, whereas workshop 3 was conducted at the Center for General Practice in Aalborg. All workshops lasted approximately 3 hours, distributed across three 40-minute phases and brakes. Each workshop was conducted with a primary coordinator (SKJ), a workshop facilitator who introduced workshop activities and guided participants through the 3 phases, and 2 cofacilitators (AMK, MSR, and JLT) who would help the facilitator in guiding group discussions and otherwise observe the process from the background. Upon arrival, participants were divided into work groups of 3 to 4 participants each. Each workshop was initiated with a short introduction by the facilitator and a presentation by an invited specialist, physiotherapist, mHealth specialist, and eHealth specialist. The facilitator would then introduce the case vignettes and the inspiration cards corresponding to the given phase and provide instructions about how to complete the exercises of each phase. This procedure was repeated before each of the 3 phases (critique, ideation, and vision phases) of the workshops. Each phase was concluded with a plenary discussion, during which the groups presented their thoughts and ideas, while the facilitator summarized key points on a flipboard and asked follow-up questions. Upon completion of the final phase, all groups presented their visions for an mHealth app for feedback from other participants and facilitators. The workshops concluded with a debriefing session, during which the participants were informed about their rights, completed the consent forms, and were given the opportunity to ask final questions.
Overall, 3 types of data were collected to illuminate the problem from different angles. Clinical characteristics of study populations 1 and 2 were collected using web-based forms, whereas core data from population 3 were collected through phone interviews. During workshops, participants’ visions and insights emerging from plenary discussions were noted on flipboards by the facilitator, and group discussions were captured via audio recorders for analysis and interpretation using reflexive thematic analysis (RTA).
The data gathered during the 3 future workshops were analyzed through RTA by Braun and Clarke [
The social media posts and phone screening generated 36 potential participants for workshop 1 (young adults) and 19 potential participants for workshop 2 (parents). Our efforts to contact GPs in the Northern Jutland area via emails and cold calling yielded 17 potential participants from the 21 who were initially contacted (
A flowchart providing an overview of the 3 lines of inclusion from when participants responded to our outreach efforts (social media posts or emails).
RTA uncovered a narrative of 5 storybook themes. Overall 3 themes described the roles participants played within the treatment situation, and 1 theme described the collaborative barriers and challenges across contextual settings. Theme 5 identified core features and collaborations based on the participants’ visions for an mHealth app. The insights from the analysis were summarized within a matrix to inform a conceptual model, identify principles for expanding the design of mHealth core features, and enable patient-parent-GP collaboration and shared decision-making.
The first theme comprised statements describing how participants experienced their emerging knee pain and the challenges related to the everyday management of knee pain. The analysis revealed how young adults described their emerging knee pain as fluctuating or something that emerged in different situations such as stair climbing, bicycling, running, sports, and gym class and affected the adolescent’s ability to engage in valued activities. The young adults described being tasked with exploring ways to cope with emerging pain and pain-related frustration, while managing the social consequences of being limited. A common theme during workshop 1 was how emerging knee pain initiated a
There is this vicious circle, where you start feeling the pain during sports, talk about it at home, go to the doctor, and then the doctor tells you that there is nothing. You go back to everyday life again, return to school, try to spend time with your friends and start to feel pain again. You withdraw for a little while, and start being left out of your [friend] group. So, you return to sports to get back into the group and the cycle continues.
One of the main challenges described, related to the invisibility of knee pain and how the adolescents were dependent on others recognizing their pain (peers, parents, and coaches) to avoid being branded as lazy, whiney, or careless. Another recurring theme related to how fear of being “benched” may result in adolescents “forgetting” or ignoring their pain to fulfill social obligations or avoid exclusion. A participant described how she considered ignoring her pain to avoid missing out of activities with friends:
Well, it is possible that you might forget to tell others about your [knee] pain, because you’re afraid that they’ll think you’re a cry-baby or that you won’t be allowed to participate in things you’re normally allowed to...We were in Africa one winter, and the team went to climb a mountain and I had to wait by the foot. Back then I considered not telling [the others] that I had pain, so I could come along.
Alternatively, 1 group (workshop 1) described how acceptance from others or honesty about the knee pain was important and empowered adolescents to stop hiding the pain and focus on managing the condition. A participant articulated the link between gaining parents and GP’s acceptance and managing the knee pain in other situations:
It’s more like a step on the journey towards gaining this acceptance from the world, but when you have the backings of your parents and the doctor...I think that makes it easier to manage it [knee pain]. I definitely remember, how it was easier to manage [the knee pain], when my mother was involved.
Apart from acceptance, participants described performing regular knee exercises and learning to “find the limit” with their knee pain as essential for breaking the vicious cycle and balancing self-care while performing everyday activities and how this was challenging for adolescents. Although young adults and parents highlighted adolescents forgetting their knee pain in nonimpact situations or losing faith in exercises as barriers to breaking the negative spiral, young adults and GPs emphasized how learning to differentiate between good and bad pain is essential for managing the knee pain:
I was always told that I just needed to be warmed up, so I ended up thinking doing sports was equal to having knee pain, and therefore I never really learned to find the limit where I should have stopped in relation to the pain I felt. The result...I would come home from training and have to lie down with my leg up because I was in pain.
Finally, young adults, GPs, and parents highlighted how adolescents may struggle to remember and expressing their pain in words when asked by parents or GPs. This posed a challenge when reaching out to parents or health care professionals for support in managing their knee pain. One group of participants (workshop 1) highlighted fear of stigma as a contributor to this problem, whereas another group’s (workshop 1) comments indicated that adolescents lacked the vocabulary for describing their pain beyond the immediate pain experience. A participant (workshop 1) described it in following way:
I also found it difficult when my physio would ask the question; where do you get pain, what is it that cause you pain, and what does it feel like?...I don’t know, because in this moment I don’t have any pain. So I can’t give you an explanation on how the pain is...
A recurring theme during the second workshop was parents referring to taking on the
My role as a parent is to take her [daughter] seriously...To do the right thing a hundred precent...this includes seeking out everything [treatments] to find out exactly what this [the knee pain] is. To back her up 100% precent, all the way through the health system.
Another participant exemplified how taking the parent role also meant stepping in and setting boundaries when they felt their adolescents were not able to do so themselves. A parent described setting limits for her son’s participation in soccer:
Sure, I could tell my son that [he had to take brakes], but I’m sure he would just lie his way out of it. Well, he can’t do that right now, because I often accompany him during training and matches...You’re not match ready, since I am the one deciding this...Still, it’s hard to keep them away from it [sports] because this is what they are really keen on doing.
Although parents from both groups highlighted being present, listening, taking complaints seriously, and setting boundaries as important for supporting their adolescent’s health decisions, both groups described alternating among the 3 tasks of emphasizing with the adolescents, advocating for the adolescents, or reassessing their own understanding of knee pain to support their adolescents by creating situations where adolescents were capable of self-management. Furthermore, parents described having experienced how their adolescents struggled to remember, understand, and express their knee pain in words. This complicated the parents’ task of assessing when to seek treatment, resulting in parents overlooking or negating adolescents’ attempts to express their knee pain. Thus, the parents had to learn to read between the lines, within the adolescents’ descriptions. This need was exemplified in a parent’s description of discussing the knee pain with her daughter:
I always had to ask my daughter how bad is it? She doesn’t really complain about it [knee pain] except for what she tells me when we were in these situations...and then she’ll just tell me: but mom, I just think I’ve gotten used to it [knee pain].
In terms of advocacy, parents in both groups described instances where they had stepped in and negotiated on their adolescents’ behalf and how this advocacy initially occurred in the clinical setting and extended into the parents and adolescents’ networks after consultations. Parents described that negotiation with the GP aimed at supporting adolescents in articulating their pain and ensuring that their child benefited from their consultation. Parents described how advocacy also included withdrawing from treatment or seeking alternative treatments and information sources if they felt invalidated or that the GP did not meet their needs during consultations. A parent described how her expectations had prevented her from seeking additional treatments for her daughter:
During spring we had a longer period where I thought that we might have to take her to a GP [for the knee pain], but where our own GP who we have been seeing for years ended up quitting...and I just thought why bother because then would have to see a new one. I know the old GP would have taken it into account if I told him that we had waited and seen for a long time. We had waited for three months...But it was not him anymore so I thought we wouldn’t bother.
The data from workshop 3 revealed several tasks, responsibilities, and dilemmas, which GPs had to navigate when treating adolescent knee pain. GPs described taking on the role as teachers or coaches, tasked with guiding the adolescents into a positive spiral with decreased somatization; better disease management; and sustained, balanced participation in sports as their main goals when treating youths with knee pain. Through this, the GPs have to balance the tasks of managing the adolescents’ pain in situ, setting a stage for self-management in the future, gatekeeping, and navigating systemic constraints. However, the GP’s main goal was described as ensuring that adolescents learned to manage their condition, as described in the following quote:
What are we trying to archive? It is, that the patient [adolescent] becomes better at managing his situation. To do this, patients could benefit from becoming more knowledgeable and like being able to say; Hey...it also hurts when I’m not exercising and I believe there is a learning in this.
The participants’ statements during workshop 3 indicated how treating adolescents with knee pain was a 2-step process and how ruling out serious pathologies or trauma, diagnosing the condition, identifying the right treatments, informing, and managing expectations was part of the initial step of treatment. A GP described how identifying alarm symptoms was important:
Yes, we need to know the alarm symptoms...Are there any symptoms we professionally know that; “Oh this, this we need to effectuate on immediately if we spot it.” We need some kind of screening feature for what is acute, what is dangerous and not. We are doctors, that’s why patients come to us in the first place.
Besides momentary management, the analysis revealed how GPs developed and used different behavioral strategies in tandem with usual care, to encourage the adolescents to explore, gain insights, and gradually become better at making health decisions going forward. A GP described the strategies he used to supportive strategies:
Something that could be really beneficial is to explain to people how the pain emerges...I sometimes use the term “Pain memory,” that you can have pain on an injury that is almost fully healed, but you will continue to experience pain right? So sometimes it can be useful to show them that it [their knees] cant break. Some people have a belief that things may like fall apart.
Although one GP group highlighted how this required understanding the “full patient,” other strategies included addressing the patients’ worries and concerns to facilitate acceptance, encouraging trial and error by providing suggestions for managing pain fluctuations, exercising, motivating adherence via goal setting, and establishing working alliances with parents. However, GPs highlighted that their efforts toward supporting future self-management depended on whether adolescents felt that following the GP’s advice allowed them to better understand and control their pain. A GP described the importance of understanding the whole patient with the following quote:
You need to look at the “whole patient” like her [the case]...what she wants to archive. I normally differentiate between the lazy bodies and the non-lazy ones. With the lazy bodies, the problem is often that they will state that they have pain, because they might stand to gain from it...like I can’t participate in gym class or bicycle to school.
GPs identified several constraints within the treatment situation that had a direct influence on the GP’s treatment decisions and possible outcomes. The long disease course of knee pain and patients slipping through the cracks were highlighted as the main concerns and challenges of the GPs. Moreover, GPs pointed to adolescents’ difficulties in articulating their knee pain and patients or parents’ misunderstanding of GP’s instructions as barriers, which contributed to adverse outcomes such as dissatisfaction, withdrawal from treatments, and parents insisting for surgery. A GP described how knowing when his message got across to the adolescents was a challenge. Other GPs suggested that forming a therapeutic alliance with parents could help facilitate the knowledge translation, avoid withdrawal, and provide GPs with the ability to monitor and adjust their treatments by proxy. A GP elaborated further on this, by stating how maintaining adherence was ultimately the patients and parents’ responsibility:
But the problem is all too real in the clinic, as a lot of things will disappear within a short time, but that again means that we should be better to provide patients a safety net if it [knee pain] continues. But they also have a responsibility for coming back again [if pain persists]. I can’t take on that responsibility, all the time.
Our workshops uncovered how adolescents, parents, and clinicians engaged in different types of collaboration aimed at empowering adolescents to enter an upward spiral with increased understanding of the disease and self-management. The analysis identified several communicative barriers, which lead to tensions in parent-patient-GP communication. Young adults, parents, and GPs highlighted adolescents’ difficulties in remembering and verbalizing their knee pain as a major source of tension. GPs described how this acted as a barrier to fulfilling their role in terms of diagnosis, management education, and planning future treatments, and parents and young adults corroborated this, with young adults suggesting that adolescents’ inability to explain their knee pain may be related to lack of in-depth understanding of their knee pain. A GP suggested how pain diaries could be used to alleviate tensions, by helping adolescents to articulate developments in their pain:
Because, most 10- to 15-year-old adolescents, when you ask them to recall; How many or how often do you experience knee pain, which time of the week or whatever this might be, will have a hard time providing an ample description of this, so this way you may get an overview of how they are impacted by their knee pain...And maybe it could be combined with something [a feature] which gives an indication of their pain severity.
Another tension source was related to adolescents or parents’ expectations of obtaining a solution to the knee pain when entering a treatment collaboration. This was corroborated by young adults and parents, who described how being told “wait and see” could lead patients and parents to conclude that the GP did not believe them or know how to treat their knee pain. A parent described feeling invalidated after receiving the “wait and see” recommendation for her adolescent, and this had affected her expectations of future consultations:
Now the two of us are here where we haven’t quite made it to the GP’s yet...and we have discussed it and believe it boils down to us feeling that we weren’t heard when it...and being sent home and told to “wait and see.”...so the thought of us being sent back home again...well then, we might as well wait and see [by] ourselves.
GPs corroborated this during workshop 3, by highlighting how they knew there were limits to what they could do for adolescents consulting with knee pain and how managing parents’ expectations was quintessential when gatekeeping, to avoid parents becoming frustrated and seeking other treatments prematurely. GPs also discussed using imagery to give parents something tangible, build alliances, avoid withdrawal, and prevent parents from insisting for surgery:
It depends on how the parents are involved in this...If you can’t get an alliance with them before you have made a scanning and they are just like a white wall...like they’re simply not listening, and you know they’ll eventually walk out the door and seek out a private clinic or something, then I might open up the possibility of getting a scanning, but I generally believe that it [scanning] may potentially do more harm then good, because you might find something [unrelated].
Furthermore, GPs highlighted systemic constraints such as consultation times, subpar IT systems, and loss of communication owing to referrals as barriers leading to loss of contact with patients and parents:
We discussed how the condition may persist for a long time, potentially without a whole lot of doctor-patient contact...So when we are first made aware of the injury until they return...it could be months, even years apart before we see the patient again. And we haven’t had a chance to affect the outcome, apart from a few weeks’ time.
Parents described how their lack of knowledge about knee pain caused tensions when assessing whether additional treatment was merited, when advocating with the GP, and when communicating their adolescents’ conditions and forming alliances with actors in their networks (teachers, coaches, and other parents). Thus, parents and young adults described how parents’ lack of knowledge meant that they risked overlooking or negating adolescents’ symptoms, unnecessarily restricting their sports participation, or accepting nonbeneficial treatments. A parent suggested how tailored patient information could help parents to know when to seek additional treatments:
I would have liked having a guide for how long it takes...I know sundhed.dk [Danish government health portal] has something where you can describe your symptoms and whatever, and in the bottom I know they have something like...now its lasted for so and so long, and then should do this and this. If it looks like this, you need to contact your GP...like a guide of some sorts.
Parents and young adults described an emerging dynamic, which eventually led to the formation of an alliance in which parents helped adolescents to create space for their self-management in everyday situations. Although young adults described how parental recognition made it easy to confront teachers, peers, and coaches about knee pain, reaching out to parents meant risking being dismissed or restricted from sports participation, which created tensions. In contrast, ensuring their child’s well-being was highlighted as quintessential to parents, but their lack of understanding about knee pain sometimes led them to take the wrong actions when their adolescents presented pain. Parents described how taking a more trusting approach reduced tensions and allowed them to focus on gatekeeping; advocacy during GP visits; and engaging with teachers, coaches, and other parents to create space for their adolescent’s self-management. A parent articulated this in the following way:
But it comes back to what responsibility you have as a parent. Because you make the decision to enter actively into it [supporting the adolescent] and provide your input. And by this I don’t mean entering something into a dead system. You look the other person into the eyes and say; I have this issue with my child, can we work out a solution together.
Finally, the analysis identified several visions for mHealth core features for enhancing collaboration and shared decision-making across collaborative spaces. The visions were distributed across 3 categories, directed toward enhancing reassurance, supporting pattern recognition and articulation of knee pain, and enhancing 2-way communication. However, participants described these core features as intersecting and needed to support different activities simultaneously for maximum effect. A GP described how his group envisioned that an mHealth app should support different tasks simultaneously:
I’m thinking that you could create a three-legged system. Like something with monitorization of, what’s the status of this [knee pain]. How is it developing. A tool for treatment as well as a patient education tool.
Participants envisioned an mHealth app containing features for reassuring adolescents and helping them to test and evaluate their management decisions, when the knee pain emerged in everyday situations. Both GPs and young adults suggested how a library (videos) with trustworthy information about knee pain mechanisms, possible trajectories, and a
Well, I did actually get started on some type of rehabilitation, but I eventually quit because I didn’t really feel that it worked...so if you’re thinking apps, then incorporating one [a feature] which provides you with suggestions for exercises and gives you reminders like “remember to make these exercises.”
Participants across all groups suggested having core features that empowered adolescents to monitor, explore, and identify patterns in their knee pain. Both young adults and GPs described how a journal feature could support adolescents’ self-management by helping them in identifying activities that caused pain. Nevertheless, young adults and parents suggested incorporating reminders and predefined pain scales to reduce the burden related to monitoring the knee pain. All participants suggested that visualizing journal entries could help adolescents in overcoming their challenges by remembering pain-causing activities and articulating their knee pain when it emerged. Young adults suggested how incorporating a map visualizing common developments in the knee pain could assist adolescents and parents in assessing how the knee pain progressed and establishing treatment goals. This was corroborated by GPs who described how this feature could help adolescents in identifying activities that would not affect their knee pain:
...And then there was something with a pain measurement [feature], where you could note it as logbook with where you had pain and how much pain you had, but a combination of them, where you could get the connection between...I have this pain, maybe it subsides when I’m not active.
Finally, participants envisioned how core features could be expanded to enable negotiation of meaning and shared decision-making, but this required a balance because actors had different information needs. Participants generally agreed that the journal and visualization features were central to this, by providing GPs and parents’ insights into the adolescent’s experience. Young adults and GPs described how visualizing journal entries could help resolve tensions in GPs and adolescents’ communications during clinical visits by providing a common ground for discussions, whereas GPs and parents described how visualizations could also help GPs in adjusting treatments to the patient’s needs. However, GPs described how this required visualizations to be aggregated for easy overview to avoid time loss. Another vision related to the exercise library was how incorporating a checklist with symptoms to look out for could help parents in deciding when to seek additional treatments and prepare parents for engaging with coaches, teachers, GPs, and physiotherapists. Finally, GPs and parents described how an mHealth app could facilitate information flow during transitions between treatments or when negotiating with external actors (physiotherapists, coaches, and teachers), by alleviating tensions related to parents or adolescents forgetting information obtained from clinicians between consultations. This was corroborated by the young adults, who exemplified how an app could facilitate an ongoing negotiation among multiple actors, to ensure acceptance of the knee pain. This was exemplified in the following quote:
We discussed how it [an app] should be a little bit like “school-parent communication software”...but in a way where you have communication between the patient and the GP, and where the GP can post your exercises along with comments, videos or whatever...This way we get that acceptance of how the pain is real, which means the surrounding world are in on accepting them, but you need to start with the ones who are closest, like mom and dad.
The matrix analysis informed the construction of a conceptual model. Organizing participants’ descriptions about their roles, tasks, challenges, and interactions within a system identified how adolescents, parents, and GPs were interconnected within a triadic relationship, where all actors engaged in different modes of management behaviors (
The conceptual model that was designed to illustrate the complex interplay between participants’ roles, their proximal and distal goals, management tasks, and barriers present in the collaborative space. GP: general practicioner.
The layout with the embedded triangles illustrated that the participants’ collaboration in managing the adolescents’ knee pain unfolded at the individual and community levels across multiple contexts. A key insight was not only how participants took on different roles, tasks, and responsibilities within the collaborative space but also how these roles were often dual-sided and contradictory in nature. The individual triangles (top, left, and right) were designed to illustrate how the actors (adolescents, parents, and GPs) navigated these role-based contradictions via their management decision-making (center) in their individual contexts—an act that was obscured to other actors unless disclosed via words or observable actions. The matrix analysis identified how all actors encountered management barriers, which they could not resolve themselves (eg, obtaining a diagnosis, gaining knowledge about knee pain, and securing social support) and caused tensions in the collaborative space (
Considering participants’ visions for an mHealth app, described challenges, and identified tension sources (
The young adults, parents, and GPs envisaged how health information collected via quantified self-tracking could support adolescent-GP communication and how their information needs differed in terms of timing, timelines, and modalities. Participants described how the act of self-tracking knee pain via, for example, pain journals, receiving tailored patient information (etiology and exercise support), and performance feedback, could help adolescents in assuming the role of explorers through the identification and articulation of patterns in their knee pain. However, this required that the delivered health information should be actionable in everyday settings to encourage exploration, compliance, and articulation. Furthermore, visualizations of aggregated self-tracked data could help adolescents and GPs to overcome communicative barriers by assisting adolescents in recalling and articulating previous developments in their knee pain, while simultaneously giving GPs a foundation for guiding the adolescents—by providing GPs an overview of the adolescents’ trajectory, the ability to monitor the effects of treatments and exercise regimes, and a starting point for discussing future treatments. However, effective presentation and delivery of the self-tracked health information were crucial to ensure GP use in complex clinical settings.
Young adults highlighted how acceptance and adapting an honest perspective about knee pain was important for facilitating adolescents’ transition to self-management and how parental support could help adolescents to take on the role as explorers. The analysis revealed how different types of static information (patient cases, lists of symptoms, exercise videos, and patient information) could promote safety in making management decisions (individual level) by providing reassurance, along with vocabulary and expert information that adolescents could include when explaining their knee pain to peers, coaches, and GPs to avoid stigma. For parents, static information delivered with the app (eg, leaflets or webpages targeting parents and adults) could empower them to create space for adolescents’ exploration of their knee pain (decision-making) and remove management barriers through negotiations with other parents, teachers, coaches, and GPs. This included enhancing parents’ knowledge about knee pain symptoms and treatment types, while providing them with guidance and tools for how to engage and educate other actors, coaches, teachers, and other parents about knee pain and the management needs of their child.
Finally, the analysis outlined how communicative difficulties between GPs and parents could lead to tensions and parents deciding to withdraw and seeking other forms of treatments and how this was driven by parents not feeling seen or heard when consulting GPs. Both parents and GPs suggested incorporating core features that could help parents and GPs in entering negation and building alliances. Including a checklist for parents with symptoms and questions for GPs could limit tensions by ensuring that parents felt heard during consultations, while providing GPs space for addressing parental expectations to treatments. Furthermore, providing parents with information materials (folders and webpages) about the adolescent’s symptoms, treatment options, and prognosis could help them to adjust their expectations, while cultivating a sense of co-ownership and forming treatment alliances with the GP.
Our findings revealed several key insights that should be considered when designing mHealth apps as tools for facilitating patient-centered treatment of adolescents with knee pain in general practice. Our analysis indicated how adolescents, parents, and GPs entered a triadic relationship with different goals, tasks, and information needs, similar to what Hohmann [
Systematic reviews describe how including mHealth apps during the treatment of adolescents with self-management needs from chronic conditions was associated with a host of observable benefits, which included positive changes in patients’ disease understanding, self-management capabilities, treatment adherence, and health behavior [
Qualitative studies by Slater et al [
Our analysis identified how adolescents’ management of their knee pain was a leveled activity, as described by Modi et al [
Qualitative studies outline how managing knee pain is complex and involves adolescents balancing several activities including understanding their pain, maintaining function in everyday situations, care seeking, self-reflecting, and adjusting to a life with pain [
Regarding participating in care activities, participants highlighted how remembering and sustaining correct performance with exercises was a barrier, as observed by Faber et al [
Finally, recall and articulation of knee pain were highlighted as barriers when seeking support from GPs and parents. Participants suggested that goal setting, quantified self-tracking, and pain journals could help adolescents in overcoming this barrier, by registering pain triggers, identifying pain thresholds, and assessing the value of behavior change. This resonated with the findings by Slater et al [
The young adults highlighted how GP and parental support had helped them to accept their knee pain and take on the role as explorers [
Nonetheless, our findings expanded upon this by describing how all participants were engaged in individual reflective processes and navigated both proximal and distal goals, as illustrated by Ryan and Sawin [
In terms of legitimate peripheral participation, our analysis outlined how adolescents were engaged in a
A key insight was how participants navigated the collaborative space through 2 modes of management behaviors, echoing the descriptions of Brooker [
Our exploration of mHealth literature related to this study failed to uncover mHealth concepts that incorporated all 3 principles for supporting negotiation and shared decision-making simultaneously; 3 designs were identified, which included 1 or 2 of the previously mentioned principles. The PainApp described by Koumpouros [
Literature describes how mHealth apps could act as a silver bullet for introducing patient-centered treatment approaches [
Several studies outlined mHealth’s potential for improving patient-clinician communication during consultations [
The conceptual model outlined how adolescents, parents, and GPs required different modalities of information to sustain their roles, management practices, and inform negotiation. This places substantial demands on ensuring the interpretive flexibility of core features to act as enablers for shared decision-making. We infer that a future mHealth app should include 3 data loops: 1 with
The workshops’ inclusion of generative methods for facilitating dialogue and coconstruction of knowledge enabled us to extract the tacit and latent knowledge of our participants, which may not have been accessible via qualitative or focus group interviews [
mHealth apps are often hailed as a silver-bullet solution for introducing patient-centered and collaborative care approaches in complex care settings. Although actors navigated the complexity of the collaborative space through 2 modalities of management, role negotiation acted as a linchpin for reducing collaborative tensions and expanding actors’ management practices via shared decision-making. An mHealth app for treating adolescents with knee pain should accommodate multiple users and enable them to shift between individual management; take charge; and engage in negotiation of goals, roles, and tasks to inform shared decision-making. Our conceptual model identified 3 silver-bullet principles for consolidating mHealth core features as enablers for negotiation of goals, tasks, and roles by supporting patient-GP collaboration, empowering parents to facilitate transition, and cultivating the parent-GP alliance.
CONSORT-eHEALTH checklist (V 1.6.1).
Case vignette.
Examples of inspiration cards.
Overview of inspiration card themes.
Overview of steps taken during the data analysis.
Themes obtained from the thematic analysis.
Tension map.
Themes identified from plenary discussions.
Consolidated Standards of Reporting Trials of Electronic and Mobile Health Applications and Online Telehealth
general practitioner
mobile health
reflexive thematic analysis
The study presented in this paper is independent work, which is supported and financed by the Research Foundation for General Practice (A1819; SKJ). The study was conducted at the Center for General Practice, Department of Clinical Medicine at Aalborg University. The views expressed in this paper are those of the authors and are not to be attributed to the Research Foundation for General Practice, Center for General Practice at Aalborg University or Aalborg University. The author group would like to extend their gratitude to all the young adults, parents, and general practitioners (GPs) who participated in their workshops and shared their personal stories and perspectives with them. In addition, the authors thank Nord-KAP—The Quality Unit for General Practice in Northern Jutland, for allowing them to use their network for recruiting GPs; Camilla Ulfkjær Østergaard for helping to facilitate their workshops; Andreas Lind Johansen for help with designing the conceptual model; and Negar Pourbordbari for helping the authors to advertise their study to young GPs.
None declared.