Patients’ experiences of internet-based Acceptance and commitment therapy for chronic pain: a qualitative study

The aim of this study was to explore how IACT was experienced by chronic pain patients who had participated in a controlled trial [12].

Participants in the present study had completed an IACT for chronic pain [12]. The treatment program was based on ACT principles [31] and consisted of seven chapters of different themes, for example Alternative to control, Willingness, Thoughts and Emotions and Life values. Each chapter consisted of a written part and audio tracks with metaphors and present moment exercises. All chapters also included a number of exercises for the participants to do by themselves. Participants had weekly therapist contact via the internet and also telephone contact at two occasions during the treatment. Results of the trial [12] showed improvements in favor for the treatment group on pain acceptance, Chronic Pain Acceptance Questionnaire, (d = 0.41); subscale pain willingness, (d = 0.49); subscale activity engagement, (d = 0.60), Hospital Anxiety and Depression Scale anxiety, (d = 0.18); depression, (d = 0.44), two subscales from Coping Strategies Questionnaire (CSQ); catastrophizing (d = 0.51); praying/hoping (d = 0.28), and two subscales from Multidimensional Pain Inventory (MPI); pain interference (d = 0.56); affective distress (d = 0.30). Results were maintained at 6 months follow up, except for the MPI-Pain interference subscale which was improved (d = 0.32). Significant effects were not found on Quality of Life Inventory, The Pain and Impairment Relationship Scale, the subscales diverting attention, reinterpret pain sensations, coping self-statements, ignore pain sensations, increasing activity level and pain behaviours from CSQ or on the subscales pain severity, life control, support, punishing responses, solicitous responses and distracting responses from MPI. Additional data is presented in [12].

Of the 76 patients who participated in the IACT program for chronic pain, 18 completed all modules. To collect patients’ experiences of the treatment program as a whole, a selection was made, so that only those 13, who had completed the entire program within the designated treatment time, were asked to participate. As one person was excluded due to health reasons, the remaining 12 were asked to participate. Of these, 11 accepted; 8 women and 3 men with mean age 46 years old (spanning from 27 to 86) (1 declined for an unknown reason). Pain duration varied from 2.5 to 22 years. A wide range of pain diagnoses were represented, and they all had chronic pain in at least two localizations. All participants received compensation from the social insurance agency. Four participants worked part-time or studied. An equal amount had high school education as had college education.

Nine months after treatment, participants were interviewed over the telephone, by one of two interviewers (second and third author). Interviews started with background questions about employment status, pain demographics and duration and their health status (see Additional file 1). The following questions throughout the interview were open and explorative in a semi-structured way, in order to produce a free story of their experiences [47], for example “Tell me about the treatment you’ve received”. Deepening and clarifying questions were used to help participant formulate their experiences. The interview guide was revised with minor changes after an initial pilot interview. Mean length of interviews were 43.7 min (spanning from 33 to 57). Besides transcripts of interviews, the interviewers’ impressions were also written down for later inclusion in the analyses. The two interviewers listened to each other’s interviews and completed each other’s transcripts. A supervising researcher (fourth author) read parts of the material and contributed with ideas to the analysis.

At first, all transcripts were read through repeatedly for the interviewers to get familiar with the material and get an overview. Each transcript was summarized in a list of content (see Fig. 1). All material (transcripts and lists of content) was coded openly segment by segment. The material was coded while moving quickly through it, in line with grounded theory [16]. Codes were simple, focusing on actions and processes in participants’ narratives, as recommended in constructivist method of analysis [17]. Transcripts were read and coded separately but simultaneously by both interviewers and continuously discussed. As codes emerged, they were joint in 18 more abstract categories.

Relations within and between categories were discovered as they were coded axially. Emerging ideas and hypothesis were asked to the material, by constant comparative analysis [15], in order to elaborate its complexity and variations. This resulted in a wholeness with primarily new categories and subcategories. Transcripts were read again to be viewed from the eyes of new ideas, in attempt to find new patterns or perspectives. In doing so, categories were continuously compared with initial data. In the latter part of the analysis process, further contrasts and contradictions were brought to light and a complexity within each category emerged. All material was once again read through so that nothing substantial had been lost in the wholeness. Meanwhile, clarifying quotes were noted. In the final stage of analysis, patterns were sought in attempt to understand why participants experienced the program differently, learnt diverse things as well as changed in disparate ways. A meaningful wholeness was expressed in two core categories and 8 subcategories.

In line with constructivist grounded theory [15, 17], pre-knowledge of the two interviewers were written on memos and were taken account for in discussions of preliminary ideas early in the analysis process. In collaboration with a supervisor, the influence from pre-knowledge was elaborated to enable interactive movement from data material to theoretical knowledge. In order to keep an open mind while collecting and analyzing data, comparisons with previous findings were primarily done in the latter part of the analysis process.

Quotes in Table 1 and in written text are presented to illustrate and clarify category content. Quotes are grammatically corrected and words have sometimes been replaced to ensure anonymity.

The interaction between participants’ characteristics (as physical ability, expectations, motivation and knowledge) and the specific treatment (IACT) affected their experiences. These are described in the following subcategories and illustrated by quotes in Table 1.

Impact of treatment induced changes varied. Individual characteristics influenced participants’ focus in treatment. Experienced consequences after treatment are described in the following subcategories and illustrated by quotes in Table 1.

There are variations in how patients work in ICBT [8] and how they motivate themselves [7, 13]. Adapting to treatment format goes quicker for those who easily work structured and independently [8]. This was seen in those participants who found treatment important and life evolving. Other participants completed treatment but without experiencing autonomy in working with assignments nor describing essential gains. Deadlines for treatment assignments and therapeutic alliance motivated some to carry through in treatment, as did commitment to the study and avoidance of feeling guilt or failure. For some, deadlines brought on a structure that promoted autonomy which has been seen in another patient group in ICBT [9]. For some, deadlines were found stressful, also previously seen [34] and led to negative emotions of guilt, nevertheless motivating them to complete. Deadlines gave a structure that compensated for cognitive difficulties for some. Others found deadlines too stressful and therefore excluded certain parts. Stress and limited problem-solving ability have been described as barriers for self-management [21]. Stretched treatment time has been found to prevent attrition amongst youths with chronic pain [28]. A request for a stretched deadline might be a signal of attrition [35]. Although extra time to finish an assignment might be helpful for some, it risks disrupting treatment process and structure.

All participants mentioned changes they had made in their lives during treatment. Treatment induced behavior changes that effected life in a positive way was reported in another qualitative evaluation of IACT [22]. As in the present study, the degree of behavior changes over time varied among participants. In wider research, variations like these have been suggested to depend on the extent to which treatment was applied in participants’ lives [8]. Some participants were actively seeking new ways of living and also found new ways of acting with pain and made longstanding changes. Others fell back in old habits, held on to old strategies or struggled to let go of these, meanwhile telling themselves to apply new skills. There were also participants who decided not to change the way they lived or dealt with pain. On this spectrum of behavior change, some participants found a new attitude to life and others became stagnated in previous habits, which has been observed before [10]. Participants described that their changed attitude to pain were affected by the process of confronting thoughts, feelings and pain. They mentioned calmness and self-respect as results from this process. For some, this was the most essential part of treatment. Self-discovery has been described as an enabler in self-managing pain [21]. However, some participants found the self-confrontation part too demanding and too hard to do by themselves. If negative effects would be reported during ICBT [4], additional therapist contact could be provided to guide the self-discovery process.

The ability to balance activity and rest leads to a sense of control in the everyday life of pain patients [32]. The present participants described that they prior to treatment had either given up on activities or acted without consideration. Finding a balance between fighting with pain and giving in for pain seemed to have helped participants to move away from those extreme positions. Pacing activity level by using acceptance strategies has been observed in IACT [22]. Likewise, participants in this study, in various degree showed a new mindset of flexibility towards acting with pain. Those participants who used to push themselves, described how they after treatment sometimes choose to stay home and rest. Some kept their prior activity level but choose more carefully what to engage in after treatment. A general new behavior among participants was to pause and be sensitive to ones’ needs before choosing what to do. This is a token of the psychological flexibility that ACT aims at [31]. Acceptance, self-efficacy and self-discovery has been described as drivers for optimal self-management [21]. Especially self-discovery has been suggested to elicit change [21]. In the present study, some participants were set on discovering new perspectives on pain and themselves and subsequently experienced the treatment as life-evolving. Meanwhile others were looking for new coping strategies, finding the self-confrontation part too demanding and hence did not experience change in the same degree.

One reason for the discrepancy between participants’ changes in treatment might be their expectations. Participants who stated that they had gained a new approach to life, also described that they prior to treatment was set on such a change. Others described that they wanted something new to help with pain. Being willing to make behavior changes in the presence of pain might be difficult alongside seeking new methods to reduce pain.

Since pain management sometimes focus on controlling pain and reducing symptoms, ACT may differ from patients’ previous experiences. This may cause confusion and alienate patients from the treatment rational. It has been suggested that therapeutic guidance might be necessary to help patients engage in IACT [22]. It has also been suggested that patients with chronic conditions as pain, with comorbid depression and social withdrawal, are less likely to engage in a new treatment approaches, due to previous unsatisfied treatment attempts [35]. The present treatment contained weekly homework assignments which encouraged participants to apply what they had learnt and practice new skills. Nevertheless, there are vast variations in participants’ reports of changed behavior. An active approach to ICBT has been found to elicit change [8] and committing to long-term goals have been suggested to foster continuous self-management skills [7]. In the light of the present results, it might be beneficial to explore participants’ perceptions prior to treatment to enable an active approach to IACT, perhaps through additional guidance.

Participants’ experiences of therapist support differed widely. Some described themselves as “the primary therapist” and did not wish for more support. Some participants appreciated the absence of a therapist since working on their own meant the success was a result of their own doing. Furthermore, some described that they were more honest when writing, since they did not need to handle another persons’ reaction to their most sincere feelings, thoughts and dreams. Guidance was perceived as helpful while reviewing previous coping skills and recurrent behavior patterns as well as when stating life values. Some participants appreciated the guidance although they longed for more, for example while exploring pain-related thoughts and feelings. Some longed for other contact.

Participants have previously mentioned that additional therapist guidance could improve their engagement [7, 34]. This has however to date not been shown to be more effective than regular therapist contact in ICBT [20]. It is yet to find out whether therapist guidance on demand could raise completion or satisfaction, if not outcome. Nor is it clear how it would affect participants’ perception of autonomy or self-efficacy. Patients with chronic illnesses, especially pain and those with long duration of symptoms are at risk for dropping out of internet delivered treatments [35, 36]. Their motivation to engage are recommended to focus upon, especially the benefits of internet delivered interventions for their specific needs [35]. Also, shared decision-making and person-centered communication has been described as important for fostering self-management skills [21]. Participants in the present study had vast and sometimes opponent perceptions of therapist contact. Considering this, one future question might be weather directed therapist guidance, focusing on goal-setting and self-exploration, could help chronic pain participants to engage in and prosper from ICBT.

To collect experiences of all parts and the length, pace and effort of the treatment, only those who completed the IACT pain program were selected. Even though a sample size of eleven is comparable to the ones in similar studies [21, 22], it reduces generalizability. However, at this stage of development generalizability may be low [26], as the purpose is primarily to collect experiences for further development [47].

To generate ideas on what ease as well as obstruct participation in IACT, it is essential to also include persons who did not complete treatment, who are critical or experienced negative effects. A few participants described themselves as “good students” in relation to the treatment, which has been previously described as problematic [2]. Also, participants may have held back on criticism, if interviewers were associated with the treatment itself. However, these interviewers had limited experience in IACT, which might have brought an open-mind to previously neglected opinions, as negative experiences.

Interviewing retrospectively makes it possible for participants to describe long-term consequences of treatment. However, influenced or loss of memories are to be expected. Even though telephone interviews cannot grasp non-verbal communication, these participants’ accounts were evaluated as open, personal and at times very rich in details. Also, follow-up questions in the transcripts together with interviewers’ notes show that the interviews were reflecting and elaborating, despite the distance in time and location.

The analysis was repeatedly grounded in the original data throughout the analysis process (see Fig. 2), however not in additional data. It is motivated to ground an analysis in only the primary material at a novel state of research [44]. The analysis could be considered saturated given the many contrasts, contradictions and complexities it resulted in.