The current study examined the experiences of people with chronic pain when engaging with the digital pain self-management intervention program EPIO. Participants described experiencing motivation to learn new ways to self-manage pain, and reported feeling enthusiastic, encouraged and supported by the program. They also reported being able to incorporate the content of EPIO in support of daily coping, stressed the importance of practice, and portrayed the program as facilitating increased awareness of the many aspects of living with pain. EPIO was also described as being a potential “friend”, fostering acceptance, improved communication and social support, and was referred to as something people in general, not just those living with chronic pain, could benefit from using. The following sections elaborate on these aspects and how an eHealth self-management solution such as EPIO can engage and be of potential value for people living with chronic pain.
Motivation for engagement
Participants in the current study described desire to learn and try something new to better manage their own pain as the main motivation for engaging with the EPIO program. They expressed motivation to take control of their own lives, and wanting to have something, such as coping strategies, to lean on when dealing with the presence of pain in day-to-day life. These findings are in line with existing research stating that people's desire and motivation to self-manage pain often are related to their goals and values (e.g., autonomy), and that engaging with self-management programs is a valued way to maintain a sense of control over life [41, 42]. Findings also show how participants found the EPIO program engaging and motivating for use, fostering enthusiasm and joy. Such positive emotions may also be a motivator for change, engagement and for exercising personal control over their situation [43], as expressed by the participants in the current study.
Digital, app-based programs allow users to control when, where, and how they engage with a program or intervention [44, 45], and the availability and easy access to the EPIO program (i.e., via smartphone or tablet) was highlighted by participants as a motivating factor for engagement. They also emphasized the program content (i.e., educational information and related exercises) as engaging, beneficial and of great value to them, displaying personal initiative and self-guidance with the EPIO program content. This is also in line with existing research showing that when users can identify themselves with the self-management program, their engagement increases [46].
Participants in the current study did however express finding it challenging to prioritize program use during hectic and stressful periods of time, highlighting difficulties setting aside time and mustering energy for practice in parallel with demanding day-to-day activities. The effect of self-management interventions likely stands or falls with practice [47, 48], and participants did recognize this, expressing appreciation for the EPIO program reminder functions and options for personalization of content, underlining the need to practice content and exercises often to achieve the desired effects.
Participants also expressed enthusiasm related to the design features of EPIO. Design features may enhance or regulate people`s emotions, behavior and choices regarding self-care [29, 32, 49], and the participants in the current study described positive relations to the program as well as feelings of joy, excitement and curiosity for continued use. Reasoning that if the experience of using a digital solution is a pleasant one, people will be more inclined to continue use and engagement, researchers have proposed that such affective experiences of design features play an essential role in achieving effectiveness of digital interventions or solutions [18].
As part of the program design, the EPIO program contains obtainable rewards and trophies, aiming to praise and motivate for engagement and use [36]. However, participants in the current study did not describe these features as vital for their engagement with EPIO. Instead, they described mastering exercises or completing steps in the program as rewarding enough. As such, intrinsic motivation appeared prevalent. When people are involved in opportunities that allow for personal initiative and self-guidance, as with the EPIO program, autonomous motivation can thrive, and they are more likely to feel interested and engaged [41]. Self-determination theory [50, 51], centering around motivation based on fulfilling needs for competence, relatedness and autonomy to achieve self-determination, may also shed some light as to why some participants were more motivated by their values than external factors such as praise and rewards. When people are more motivated by their values, interests and enjoyment of behavior change, they tend to stay continually engaged in the self-management process and be more satisfied [41, 42]. This is also of interest for the eHealth adherence/attrition conundrum [16, 26, 27].
The EPIO research project has employed stakeholder involvement throughout all design and development phases [35–37] to ensure vital input for program use, usefulness and usability, as well as for adherence/attrition related aspects of the program [17]. Among key input from end-users (i.e., people living with chronic pain) during the early phases were requests for daily registration options, for example personal daily registrations of sleep, rest, activity, mood and pain [35]. Options that facilitate pain focus, such as daily pain level registrations, are not necessarily in the best interest of living well with chronic pain. However, as the early involved stakeholders expressed strong wishes for these options [35], the opportunity for such registrations were incorporated into the EPIO program [36]. Findings from the current study did however reveal that daily registrations were not perceived as particularly helpful for the participants, with some even describing them as rather demotivating. The pain registration variable was subsequently removed from the EPIO program post pilot study in preparation for the RCT, while the other variables, potentially less destructive to pain self-management, still remain. It is however possible that other aspect than currently included, for example aspects targeting intrinsic motivation or self-regulation, could support motivation for use, engagement and practice as a part of daily registrations.
Digital pain management in everyday life
The participants in the current study described the EPIO program as supporting self-management and coping in their daily life, increasing their awareness about pain and pain self-management, helping find a balance between rest and activity in everyday life, and also pointed to EPIO as a resource to lean on during challenging times. They did however recognize the need to practice strategies with some regularity in order to achieve the desired effect, and also acknowledged the potential challenge with this, stressing the need for diligent and determined use despite day-to-day life obstacles.
Several factors may influence how well people use strategies in a self-management program and how long they stay engaged. For example, self-efficacy, or one’s belief that one can utilize the self-management techniques, may play an important role in this type of engagement [42, 52] and as several participants in the current study described an improved sense of control and self-confidence from the use of EPIO, this may indicate a potential digital self-management - self-efficacy link to be further explored. Self-regulatory capacity, that is, one’s capacity to regulate thoughts, emotions and behavior [53, 54] is another factor that may play a role in terms of ability to engage and undertake the necessary practice in a digital self-management setting.
Living with chronic pain entails a multitude of challenges [1] that can make frequent and continuous use of self-management programs and tools complicated and arduous. In the current study, participants reported family issues, time constraints and illnesses as the main reasons when and if they struggled to engage with the program, all known barriers to the use of digital solutions as well as self-management programs in general [24, 48, 55]. However, having attained an increased awareness and experienced desired benefits of at least parts of EPIO (e.g., relaxation exercises), participants also reported being aware of the potential negative impact of stress on pain, breathing and the “mind-body” connection. Being aware of these potential negative consequences appeared to encourage participants in the current study to deal with obstacles in new ways and to continue using the EPIO program. This was for example seen in the perceived importance of breathing exercises as valuable tools for managing high levels of stress and pain, a finding also in line with existing research [56–58].
Additional values engaging with digital pain management interventions such as EPIO
Participants in the current study described EPIO as an intervention program that could be of benefit to people in general, not just those living with chronic pain. They also referred to EPIO as having the potential to help valued people in their life (e.g., friends, family) gain a better understanding, perhaps subsequently becoming more supportive, of those living with chronic pain. This result is in line with existing research indicating that people's desires and motivation to learn self-management of chronic pain also can entail a need for connection and a sense of belonging (e.g., relatedness) [41, 42, 48]. This may also explain why some of the participants chose to share their EPIO use and experiences with others (e.g., health care personnel and peers), as they described opportunities for meaningful interaction and communication. These findings are consistent with existing research indicating that app-based solutions may facilitate valuable discussions between patients and their health care personnel [59]. The fact that participants described sharing the use of EPIO as beneficial, providing a sense of support and making program engagement easier, is also a finding that may be important for the future implementation of digital interventions such as EPIO.
EPIO was also described as a friend, allowing participants to feel less alone in their day-to-day struggles living with pain. This suggests facilitation of a supportive interpersonal aspect, and is also consistent with engagement-related research indicating that users are often willing to engage more and create relations with intervention technology that share features similar to human relationships [60, 61], and such human-technology relationships may increase the perceived meaningfulness of digital interventions [61]. This also points to the importance of communication and social support, going beyond the technical aspects of digital solutions, highlighting the necessity of taking these factors into account when aiming to foster user engagement [62].
The complexity, demands and challenges of living with chronic pain may lead to a draining of the capacity to self-regulate [53, 54, 63]. Participants in the current study reported that EPIO provided them with a better understanding of their own situation, fostering acceptance. This new understanding and acceptance appeared to have brought with it a wish to make peace with the presence of pain, working with the pain rather than against it. Participants also described having realized the importance of prioritizing their own needs and goals in this process, which again allowed them to focus on self-management and self-regulation. Continuing to find ways to help people with chronic pain build or strengthen their self-regulatory capacity and support motivation to engage in pain self-management strategies, such as the EPIO program, appears vital [64].
Finally, there are some indications that eHealth programs may yield better adherence and positive outcomes when combined with in-person support [17, 65–67]. The EPIO intervention program was therefore delivered in a blended-care model (i.e., one in-person introduction session, nine app-based modules, and one follow-up phone call) to support adherence and user engagement. Participants in the current study reported appreciating the contact with the research team, albeit limited, valuing being able to ask questions concerning their use of EPIO and describing generally feeling engaged, supported, and taken seriously. The findings also point to the difficult aspects experienced by many people living with chronic pain; the feeling of being alone and not experiencing being heard, seen or understood [68]. Could digital self-management solutions, such as EPIO, delivered in a simple blended care model entailing some, although minimal, contact with providers, contribute to alleviating some of these substantial challenges for people living with chronic pain?
Strengths and limitations
The current study has a number of limitations. First, the participants in the feasibility pilot-study were recruited through social media and collaborating partners, and it may therefore be assumed that the participants were highly motivated for participation. However, ensuring a balanced group of participants in the interviews (e.g., gender, work status and program progress) allowed insight into a range of participant perceptions and experiences. Second, the first author was involved in analyzing the transcribed data, including creating the coding framework and the organization of themes, which could introduce a risk of researcher bias in the qualitative evaluation. The study did however aim to address this potential bias and assure transparency of data by the inclusion of co-authors and the core research team in the analysis process. Also, the study sample was primarily Caucasian and the feasibility pilot-study participants primarily female, limiting the generalizability of these findings. All participants' input was however assessed together during the analysis, aiming for a varied, rich insight into people’s perspectives when engaging with EPIO.
This study also has a number of strengths as aspects of trustworthiness [69] (e.g., credibility, transparency) were well covered. First, the interviews were conducted by research personnel who were not involved in the data analysis, reducing potential research bias. Second, the credibility was assured by describing all steps in the analysis process as thoroughly as possible to allow the reader to follow the logic of the findings. By embedding carefully chosen quotes in the final manuscript, the researchers aimed to give the participants a voice in the outcomes while contributing to the credibility and transparency of the research. Transparency was also assured by method triangulation [70]. Finally, the researchers used several methods of data collection (i.e., notes from follow-up calls and interview transcripts) to gain a comprehensive view of the phenomenon representing changes in the participants' experiences when engaging with the EPIO program.
Future implications
The current study sought to address gaps in the existing literature examining engagement with digital pain self-management interventions, exploring the experiences of people with chronic pain when engaging with EPIO, an app-based pain self-management intervention program. Identified factors of engagement included motivation to learn, design and content fostering joy and enthusiasm, as well as helpful reminders and options for personalization. That positive emotions such as joy and enthusiasm can motivate people to engage in self-management and care supports existing research [43], and future research should examine how positive affect can be strengthened and channeled to further foster engagement with digital solutions. Future explorations of these aspects may also help understand why certain design features (e.g., gamification) work for some but not for others [26, 71]. Given the significant adherence/attrition challenges with digital interventions [24, 26, 27, 72], exploring ways to further cultivate motivation and engagement and support people living with chronic pain overcome barriers for continued use of effective digital self-management programs is crucial.
Social relations and support may be particularly important for the complex nature of self-management processes [73]. The indications that the EPIO program and/or delivery model may have fostered communication and social support, subsequently also impacting engagement in the current study should therefore also be further explored, including as factors for use and for implementation. With the suggestions of improved sense of control and self-confidence following use, future studies should also explore the role of self-regulation and self-efficacy when engaging with such self-management interventions.
Even though EPIO in this study targets chronic pain in general (i.e., not pain condition specific), it should be stressed that “chronic pain” is rarely considered a homogeneous entity, and type, form and degree of pain may differ depending on condition (e.g., fibromyalgia, spinal cord injury, trigeminal neuralgia). EPIO is developed based on recognized CBT/ACT related approaches to general pain self-management, and a degree of beneficial impact could therefore potentially be expected regardless of pain condition type. Considering the heterogeneity of chronic pain, however, future research should strive to explore to potential impact depending on pain condition(s).
It is possible that the simple blended care delivery model employed may have impacted motivation for engagement in the current study. Future research should therefore aim to explore engagement comparing delivery models (e.g., app-based only, simple blended care, more complex blended care etc.) of digital pain self-management interventions. Finally, the current findings showing engagement with EPIO through motivation to learn, enthusiasm and use of personalization, as well as raised awareness and a sense and fostering of support, compliments previous findings examining the system use, perceived usefulness and ease of use of EPIO [38]. The next step, examining the actual efficacy of EPIO in a randomized controlled trial, is currently being conducted.