Participants living with chronic pain described experiencing motivation to learn new ways to self-manage pain after engaging with EPIO, 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 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 everyday life. These findings are in line with existing research stating that people's desire and motivation to self-manage pain are often related to their goals and values, and that engaging with self-management programs is a valued way to maintain a sense of control over life [42, 43].
Digital solutions 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].
The effect of self-management interventions likely stands or falls with practice [47, 48], and while participants in the current study expressed finding it challenging to prioritize program use during hectic periods of time, they recognized the need for practice and described appreciation for the EPIO program reminder functions, and options for personalization of content, to help them achieve the desired effects. Along the same line, participants described finding the EPIO program engaging and motivating for use, fostering enthusiasm and feelings of joy, excitement and interest. Such positive emotions may be a motivator for change, engagement and exercising personal control over one’s situation [49], potentially even fostering continued use. As design features may enhance or regulate people`s emotions, behavior and choices regarding self-care [30, 33, 50], affective design feature experiences may even play a role in achieving digital intervention effectiveness [19].
Aiming to praise and motivate for engagement and use, the EPIO program design contains obtainable rewards and trophies [37]. However, participants in the current study described mastering exercises and completing program steps as their primary rewards. 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 [42]. Self-determination theory [51, 52], centering around motivation based on fulfilling needs for competence, relatedness and autonomy, may hence also shed some light as to why intrinsic motivation seemed more apparent than external factors (e.g., praise and rewards) in this study. 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 [42, 43]. This can also be of interest for the eHealth adherence/attrition conundrum [17, 27, 28].
Stakeholder involvement has been employed throughout the design and development phases of the EPIO program [36,37,38] to ensure vital input for program use, usefulness and usability, as well as for adherence/attrition related aspects of the program [18]. Requests for daily registration options (e.g., sleep, rest, activity, mood and pain) were originally requested by end users (i.e., people living with pain) [36], and incorporated into the program [37]. Participants in the current study did however not perceive daily registrations as particularly helpful, even describing them as demotivating. The pain registration variable was subsequently removed from the EPIO program post feasibility pilot-study in preparation for the randomized controlled trial, while the other variables, potentially less impeding on pain self-management, still remain.
Digital pain management in everyday life
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 [43, 53] 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.
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 [25, 48, 54]. 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. This awareness appeared to encourage participants to deal with obstacles in new ways and to continue using the EPIO program, for example seen in the perceived importance of breathing exercises as valuable tools for everyday management of stress and pain, a finding also in line with existing research [55,56,57].
Additional values engaging with digital pain management interventions such as EPIO
Participants in the current study referred to EPIO as having the potential to also help valued people (e.g., friends, family) gain a better understanding, perhaps subsequently becoming more supportive, of those living with chronic pain. This finding 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) [42, 43, 48]. Similarly, the sharing of EPIO use and experiences with others seen in this study is consistent with existing research indicating that app-based solutions may facilitate valuable discussions between patients and their health care personnel [58].
EPIO was also described as a friend, allowing participants to feel less alone 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 [59, 60], and such human-technology relationships may increase the perceived meaningfulness of digital interventions [60] and play a role in fostering user engagement [61].
The complexity, demands and challenges of living with chronic pain may lead to a draining of the capacity to self-regulate, that is regulate own thoughts, emotions and behavior [62,63,64]. Participants in the current study reported that EPIO provided them with a better understanding of their own situation, promoting acceptance. 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. Self-regulatory capacity may play an important role in terms of ability to engage and undertake the necessary day-to-day practice in a digital self-management setting, and 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 [65, 66].
Finally, there are some indications that eHealth programs may yield better adherence and positive outcomes when combined with in-person support [18, 67,68,69]. 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, albeit limited, with the research team, 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 [70]. 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. Third, of the 50 participants in the feasibility pilot-study, 28% completed all 9 program modules, 62% completed six modules or more, and 10% completed less than six modules by the 3-months study completion (see Table 1 for details). Even though the EPIO program can be completed in 27 days (3 days × 9 modules), however, the goal is not for the participants to complete the program as quickly as possible, but rather spend time practicing the content before moving on to the next topic. This is underlined by the EPIO program and was also stressed by the project team, and it is therefore possible that a 3-months study period is not enough time for people with chronic pain to complete such a program. In the current study however, the 15 participants interviewed were selected to be representative of age, gender, work-status and program progress (i.e., even distribution based on number of modules completed) from the feasibility pilot-study, and module completion progress (i.e., all modules, ≥ 6 modules, and < 6 modules) was evenly distributed between included participants (i.e., 33% each, see Table 1).
Also, the study sample was primarily Caucasian and the feasibility pilot-study participants primarily female, limiting the transferability of these findings, and given that women primarily volunteered for study participation, the feasibility pilot-study may be considered a sample of convenience. The prevalence of chronic pain is however higher among females compared to males [71], and self-management interventions also appear to be a preference for females compared to males, at least when it comes to study recruitment and participation [72]. In the current study, a fairly balanced number of females (53%) to males (47%) were included in the interviews, and all participants' input was 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 [73] (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. Trustworthiness was also ensured by using methods triangulation including combining data from two sources (i.e., notes from follow-up calls and interviews transcripts) and researcher triangulation (i.e., involving several researchers in the study [74]. The latter was done to reduce the potential bias that comes from a single researcher doing the analysis alone.
Future implications
The current study sought to address gaps in the existing literature examining engagement with digital pain self-management interventions. Identified factors of engagement included motivation to learn, design and content fostering joy and enthusiasm, as well as helpful reminders and options for personalization. Such findings are transferrable to other digital interventions, including non-pain related self-management contexts such as for example behavior changes interventions, weight-, and stress-management interventions, and medication management and adherence programs. That positive emotions such as joy and enthusiasm can motivate people to engage in self-management and care supports existing research [49], 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 [27, 75]. These are all aspects that may be of interest in research focusing on digital health interventions, regardless of end-user population or context.
Even though the EPIO intervention examined in the current study targets chronic pain in general (i.e., not condition specific pain), it should be emphasized 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 potential impact depending on pain condition(s).
The nature of self-management processes is complex, and social relations and support may be particularly important for these processes [76]. The indications that digital programs may foster communication and social support, subsequently impacting engagement, as indicated in the current study, should therefore be further explored. These are also aspects that will be of interest and transferable, regardless of context. For example, research already states that peer support can improve engagement with digital self-management or cope with a chronic condition in general (e.g., asthma, diabetes) [77]. 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 digital self-management interventions. Furthermore, given the significant adherence/attrition challenges with digital interventions [25, 27, 28, 78], exploring ways to further cultivate motivation and engagement and aid people with chronic pain overcome barriers for use of effective digital self-management programs appears crucial.
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 also 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 program engagement through motivation to learn, enthusiasm and use of personalization, as well as raised awareness and a sense and fostering of support, compliments existing feasibility (e.g., use, usefulness, ease of use) findings for the EPIO program [39]. Establishing efficacy, a frequent limitation for existing eHealth pain management programs, should be a goal for future research examining digital self-management interventions, and a randomized controlled trial testing the efficacy of EPIO is currently being conducted.