Abstract
Purpose.
Improved management of pain and co-morbid symptoms (sleep disturbances, psychological distress) among women undergoing surgery for suspected gynecologic malignancies may reach a population vulnerable to chronic pain.
Participants:
Women undergoing surgery for a suspected gynecologic malignancy.
Method.
We conducted a pilot randomized controlled trial of eHealth Mindful Movement and Breathing (eMMB) compared to an empathic attention control (AC). Semi-structured interviews were conducted by telephone (n=23), recorded, transcribed, coded, and analyzed using thematic analysis.
Findings.
Participants reported overall high acceptability such that all would recommend the study to others. Positive impacts of practicing eMMB included that it relieved tension, facilitated falling asleep, and decreased pain. Participants also reported high adherence to self-directed eMMB and AC writing practices and described facilitators and barriers to practicing.
Conclusions.
This qualitative feedback will inform future research to assess the efficacy of eMMB for reducing pain and use of remotely-delivered interventions more broadly.
Link to Clinical Trial Registration:
Keywords: Gynecologic Cancer, Surgery, Mind-Body, Pain, Qualitative, Research Design
Purpose
Improved management of acute perioperative pain and co-morbid symptoms (i.e., sleep disturbances, psychological distress) among women undergoing surgery for suspected gynecologic malignancies may proactively reach a population vulnerable to chronic pain.1,2 Clinical guidelines for chronic pain management recommend use of multimodal therapies with a preference for non-pharmacologic therapy (e.g., mindfulness, relaxation, exercise) and non-opioid pharmacologic therapy.2–4 Yet, guidelines specific to postoperative care for gynecologic oncology surgery focus on pharmacologic therapy for treating pain and do not include non-pharmacologic approaches.5,6 Moderate evidence supports the efficacy of non-pharmacologic approaches for surgical pain management with a gap in research for specific surgeries and more rigorous trials are needed to inform selection of the appropriate approach in this population.7 Non-pharmacological interventions that address multiple biobehavioral dimensions of pain (e.g., cognitive, behavioral) may be most effective at preventing the transition to chronic pain.8
Yoga (meditation, movements, and breathing) is a mind-body intervention that reduces pain,9 psychological distress,10 and sleep disturbances11 and improves physical function.12,13 Yoga supports multiple goals of postoperative usual care (e.g., early postoperative mobilization, emphasis on deep breathing) and could thus also help improve other surgical management outcomes (e.g., functional recovery, length of stay).14,15 Yet, limited rigorous research has evaluated yoga delivered in coordination with surgical care.
Our prior work developed and pilot-tested a brief yoga intervention, eHealth Mindful Movement and Breathing (eMMB),16,17 which remotely teaches the core components of yoga with the intention to remove key barriers to participation and mitigate the transition from acute to chronic pain. Quantitative pilot results supported feasibility and larger improvements in pain intensity and depressive symptoms in eMMB compared to a caring attention control (AC). These findings are notable given that a systematic review found that studies of behavioral interventions compared to active control groups had smaller effect sizes than those compared to usual care or waitlist control groups.18 The selection of an active control group is appropriate given guidance on selecting control groups for an efficacy study within the maturity of the broader research on yoga for symptom management in oncology.19–21 Incorporating an AC will allow us to investigate whether eMMB is more efficacious than nonspecific effects consistent across interventions in a future efficacy study (e.g., attention, efficacy beliefs).20 Yet choosing a strong control group is challenging in designing rigorous studies that examine mind-body interventions because they often have multiple potential active and likely synergistic components.21 Strong control groups need to have face validity, control for all but the hypothesized active components of the intervention, and be activities that participants are willing to engage in for the duration of a study. Given these issues, it is important to receive feedback on both the eMMB and AC groups to develop a rigorous attention control condition.
A growing body of literature supports the idea that behavioral skills can be taught through information technology (eHealth).22 eHealth likely addresses barriers to participation such as accessibility, travel distance, and dissemination (e.g., increased treatment fidelity.23 Some research supports that adherence to treatment offered through technology is as good as adherence to face-to face interventions.24,25 However, eHealth interventions have different levels of human interaction from exclusive self-direction to considerable content guidance from a person.23 The Model of Supportive Accountability26 provides a framework for assessing how supportive interactions may influence intervention adherence. This theory posits that supportive human interactions can potentially influence adherence to eHealth interventions with bond (liking, emotional attachment) being the most important factor when the treatment focus is on providing skills training.26 In addition, the Model of Supportive Accountability suggests that the influence of these interactions on adherence may be moderated by motivation and communication “bandwidth” (the number of communication cues a medium can convey). Although some suppose that as the bandwidth lessens, the quality of interaction factors lessens, this is not always so, and people can effectively communicate through various media. Thus, the optimal level of content guidance and communication medium to deliver behavioral interventions is yet to be determined.23,26 Hearing directly from patients about how effectively the media used for intervention delivery created a feeling of bond with interventionists and facilitated their adherence to the self-directed practice is critical to refining such interventions.
The aims of the overall pilot study were to determine feasibility and acceptability of eMMB and AC in women planning to undergo surgery for a potential gynecologic malignancy.17 The objective of this manuscript is to examine qualitative feedback to determine acceptability of both interventions and guide future study planning. Determining acceptability of an eHealth AC group is instrumental for next stages of the proposed research, and lessons learned may also be applicable to the study of mind-body interventions more broadly.
Methods
Study Design
We conducted a prospective stratified randomized controlled pilot study investigating the feasibility of comparing the eMMB to AC for improving pain, sleep disturbances, and psychological distress. Participants were randomized 1:1 to eMMB or AC. Allocation was stratified by cancer type (i.e., ovarian, uterine) and invasiveness of the planned surgical procedure type (i.e., laparotomy or robotic). A semi-structured interview was conducted by telephone after all other data collection was complete (approximately 4 weeks after surgery).
Participants
The following inclusion criteria were used: (1) adult females (≥18 years of age); (2) scheduled for an abdominal gynecological surgery (i.e., uterine, ovarian) to remove a suspected malignancy; (3) had an Eastern Cooperative Oncology Group (ECOG) performance status of ≤1; (4) cognitively able to complete assessments as judged by the study team; and (5) able to understand, read and write English. The following were exclusion criteria: (1) had schizophrenia or any other psychotic disorder; and (2) had a diagnosed sleep disorder including untreated obstructive sleep apnea, periodic limb movement disorder, or restless leg syndrome. Only the most prevalent gynecologic malignancies were recruited (i.e., uterine, ovarian) to increase homogeneity. We chose this population because adult women undergoing surgery for suspected cancer are at particularly high risk for experiencing chronic pain.1 In addition, this sample eliminated variability due to sex differences in pain tolerance.27
Participants were recruited from a Comprehensive Cancer Center. The study received institutional review board (IRB) approval (IRB00052655). All interested and eligible participants provided written informed consent and were compensated $10 for completing interviews (in addition to compensation for visits in the larger study). All participants retained in the study were invited to complete an interview.
Study Interventions
eHealth Mindful Movement and Breathing (eMMB).
The eMMB intervention was initially developed to be delivered in person28 and delivery strategies were refined through an iterative process in a mixed-methods one-arm study.16 The approximately 20-minute eMMB practice instructed awareness meditation, gentle movement, breathing, and relaxation. The intention to maintain attention or mindfulness, comfort, and ease was highlighted throughout the eMMB. The movements were adapted to be taught in a bed and chosen to be appropriate following surgery. Each practice included the same content, but the number of repetitions and the magnitude of movements were self-adapted based on how the participant was feeling. Yoga instructors were accredited and experienced teaching patients with medical conditions.17
Participants were given an eMMB video as a local file saved on a study tablet and/or through an online email link. Participants were asked to watch the video at least once before surgery. Yoga instructors called participants before surgery to answer questions and offer additional guidance upon request throughout the study. The yoga instructor also met with participants via a synchronous videoconference or telephone session in the hospital room or the participant’s home the day following surgery. Participants were asked to continue use of the video daily for two weeks following surgery and as long as they chose thereafter.
Attention Control (AC) Group.
An active control group was used to provide caring attention to account for the time, attention, and interactions with the eMMB interventionist, home practice frequency, and efficacy expectations of eMMB as recommended for the study of mind-body practices29 and used in prior studies.30 The AC did not include instruction of movement, meditation, or breathing practices (the presumed active ingredients of the eMMB). The format for interactions with a professional and amount of recommended home “practice” (writing diaries) was matched to the eMMB.
The interventionist asked participants to write brief daily diary entries once before surgery and then daily for two weeks following surgery. Participants were given the option to complete diaries on paper or study tablets (accessible offline). The AC interventionist called participants before surgery and offered additional caring attention upon request throughout the study. The interventionist also met with participants via a synchronous videoconferencing or telephone session following surgery for approximately 30 minutes to provide caring attention. The AC interventionists were individuals with experience working in a healthcare setting who were trained to provide caring attention through use of nonjudgmental active listening and reflection statements. AC interventionists initiated conversations with the following standardized prompt (adapted from previous studies):31–33 “What were some of the events or circumstances that affected you in the past two weeks?”. The instructions for daily diary entries were: “Think back over the past day and write down on the lines below up to five events that had an impact on you.”32
Data Collection and Analysis
Semi-structured interviews were conducted with women who completed a pilot study assessing the feasibility and acceptability of comparing and eHealth Mindful Movement and Breathing (eMMB) intervention to an attention control (AC) intervention between January 2019 and April 2020. We proposed a priori that 10–15 interviews from each study arm (20–30) would be sufficient to evaluate acceptability, which is based on achieving code saturation at between 8 and 16 interviews, and 16–24 interviews to achieve meaning saturation.34 Completion of recruitment determined the number of participants interviewed. We followed the Standards for Reporting Qualitative Research.35 All participant interviews were led by two trained research associates with experience in qualitative methods who had not previously met participants and were independent of other study personnel. Interviewers used semi-structured guides that were tailored for eMMB and AC participants (see Supplemental Appendix). They were all conducted via telephone and audio recorded. Interviews lasted approximately 23 minutes (range 11–35 minutes). All interviews were professionally transcribed, de-identified and reviewed against original audio to ensure accuracy.
A codebook was developed from the concepts presented in the interview guide and also incorporated new or emergent concepts presented by participants during discussions. Two research associates independently coded all transcripts and discussed and resolved any incongruent interpretations of the codebook or coding discrepancies. Changes made to codes and code definitions were documented as they were made. Once coding was complete, reports were run for each code, and data were synthesized within each code and across participants. Using thematic analysis, the coded text was iteratively reviewed and interpreted.36 Atlas.ti Version 8.4 was used to store and manage qualitative data. Some categories (e.g., other recovery strategies) are beyond the scope of the current manuscript. For the purposes of this report, only themes relating to acceptability, adherence and perceived efficacy of eMMB and AC are included.
Findings
A total of 23 (eMMB N=10; AC N=13) interviews were completed by a subsample of the full study sample (N=31) who were still in the study and agreed to participate (Table 1). Briefly, this sample consisted of women with a mean age of 61.3 years (range 39–76) who were primarily white and non-Hispanic. In this group, suspected cancer sites were ovary (43.5%) and uterus (56.5%).
Table 1.
Sample Characteristics* (N=23)
Total (n=23) | eMMB (n=10) | AC (n=13) | |
---|---|---|---|
| |||
Age (years) | 59.5 (12.4) | 62.7 (13.7) | 57.1 (11.2) |
Race | |||
Black or African American | 1 (4.3%) | 0 (0%) | 1 (7.7%) |
White | 22 (95.7%) | 10 (100%) | 12 (92.3%) |
Ethnicity | |||
Not Hispanic/Latinx | 23 (100%) | 10 (100%) | 12 (100%) |
Suspected cancer site | |||
Ovarian | 10 (43.5%) | 4 (40%) | 6 (46.2%) |
Uterine | 13 (56.5%) | 6 (60%) | 7 (53.9%) |
Surgical procedure | |||
Open (Laparotomy) | 8 (34.8%) | 3 (30%) | 5 (38.5%) |
Minimally Invasive (Robotic Surgery) | 15 (65.2%) | 7 (70%) | 8 (61.5%) |
Education | |||
High school or equivalent | 3 (13.0%) | 1 (10.0%) | 2 (15.4%) |
Technical/vocational school/some college | 9 (39.1%) | 3 (30.0%) | 6 (46.1%) |
College graduate/Post graduate degree | 8 (34.8%) | 4 (40.0%) | 4 (30.8%) |
Unknown | 3 (13.0%) | 2 (20.0%) | 1 (7.7%) |
Difficulty paying bills | |||
Very difficult/somewhat difficult | 7 (30.4%) | 2 (20.0%) | 5 (38.5%) |
Not very difficult/not at all difficult | 13 (56.5%) | 6 (60.0%) | 7 (53.8%) |
Unknown | 3 (13.0%) | 2 (20.0%) | 1 (7.7%) |
Number and (%) unless otherwise specified.
Acceptability
Overall.
Most participants in both the eMMB and AC groups described their experience as positive and said that the study met their expectations. All participants said that they would recommend participating in the study to others. There were participants in each group who were more neutral about their experience and questioned the link between the activities they were assigned to and pain management. Participants were asked about their preference for study activities. Many participants did not recall reading about other study groups or activities when they consented to participate. Of those who expressed a preference, most were satisfied with the activities they had completed, and satisfaction with assigned activities was not different by group.
Intervention feedback for eMMB (positive).
All participants said that they enjoyed one or more components of the practice, particularly the breathing and relaxation techniques and the leg exercises. Participants shared positive feedback about the eMMB video, and no one reported technical difficulties accessing or playing the video. They generally only used the video in the first days of their practice and then did the exercises on their own. However, one participant said that she used the video every day, and that the music helped her relax. All participants in the eMMB group reported that they practiced independently at least once per day, and nearly half reported practicing two or more times daily. One participant shared that she stopped doing the movement exercises about a week post-surgery, because she was up and moving well; otherwise, participants reported adherence throughout the study period.
Intervention feedback for eMMB (constructive feedback and suggestions).
Participants in the eMMB group shared suggestions for improving the mindful movement and breathing practice. One participant suggested more focus on breathing and relaxation and less on movement. Other suggestions for improvement were specific to the movement component. This feedback included both that the movements were “basic” or “a little boring” because they were very easy for them, whereas other participants struggled with specific movement exercises because they could not “get the hang of” them. There was also mixed feedback about the usefulness of the leg movements. Some participants liked the lower body movements as is, while others recommended more lower-body exercises to help with post-surgery soreness, and another participant thought that lower body movements were not a good fit for post-abdominal surgery patients.
Intervention feedback for AC (positive).
Of the 13 participants who participated in the journaling activity, all but one used a paper journal. Most participants reported completing daily journal entries, while others said they journaled between two and four times per week.
Most, but not all, participants said that there was nothing confusing or complicated about the journaling practice and that they were clear on how frequently to write.
Intervention feedback for AC (constructive feedback and suggestions).
Participants who said they didn’t like the journaling activity attributed this to a personal dislike/disinterest or apprehension about journaling. Others noted a lack of clarity about the duration of the journaling intervention or how frequently they were expected to write.
Adherence Considerations
Self-directed practice facilitators.
Nearly half of all participants said that their assigned practice was “simple” or “easy,” which facilitated their practice. Participants in the eMMB group also emphasized that the exercises themselves were not hard, and a few participants in both groups said that the activities were easy because they required a minimal amount of time. Participants in the eMMB group said that having a routine or a structure helped them complete the practice. Participants’ routines included practicing at the same time every day, based on guidance from study staff; finding a comfortable place to practice, such as in a recliner or on a bed; and proactively minimizing distractions (e.g., turning off televisions or cell phones, minimizing disruptions from family members). One participant in the AC group also emphasized the importance of having a routine, including a dedicated time and space to write, while another appreciated the flexibility but still followed a routine.
Self-directed practice barriers.
Many participants did not report any obstacles or barriers to their practice. A subset participants from both groups said that pain, discomfort, and/or fatigue were barriers to completing either the eMMB or writing practice, particularly in the days immediately following their surgeries. One person said that going over the exercises with the study team in the hospital didn’t work well because she was drowsy and in pain. Participants from both the eMMB and AC groups said that frequent interruptions made it harder to practice while in the hospital. Others from both the eMMB and AC groups expressed that finding time to practice was a barrier.
Participants in the AC group shared a barrier that was unique to the journaling practice: difficulty coming up with things to write about. One participant said it was hard to come up with unique topics, so she switched to writing about how the day went, which was easier, whereas another said that because she did not have much pain, she did not have much to write about for the diary entries.
Supportive Accountability.
All study participants were very positive about their interactions with study staff. They described the staff as friendly, helpful, very supportive and knowledgeable, and that they explained everything thoroughly and were prompt to respond to any questions. Participants said that they would have felt comfortable reaching out to the staff at any time, though most participants said they did not need to do so because they were well-informed. A few participants suggested additional phone or email check-ins throughout the study to ensure that participants did not have any additional questions.
Regarding communication bandwidth, participants in both groups shared that the study team set up their video conference in the hospital using a tablet and that it worked well. Participants in both groups reported having phone (audio only) rather than video conferences from home (this was the back-up plan for participants discharged the same day as surgery). A couple participants were unable to use video for the planned conference call because they could not get the technology to work, and one said that she had an older computer without video capability. All participants were still able to have successful phone calls, but for at least one person in the eMMB group, the technology issues meant that the yoga instructor was not able to see her practice the movement and breathing exercises in real-time.
Intervention Practice Impact
eMMB group.
All participants in the eMMB group said that the practice, particularly the breathing and relaxation exercises, helped them relax. Participants described the effects as relieving tension and worry, helping them fall asleep faster, and helping them focus on themselves. Just over half of the participants said that they would specifically continue doing the breathing exercises after the study because of the relaxation benefits. Participants also reported that eMMB practices decreased their pain or took their minds of off their pain. Further, participants described how their pain level decreased during their recovery and attributed this improvement, in part, to the eMMB practices.
AC group.
Participants in the AC group were not asked directly about any changes or effects of the journaling practice. Yet, nearly half of participants spontaneously expressed that the journaling practice helped them to be more reflective, including three that identified value in being able to go back and read their previous entries, and liked that the journals provided a measure of their recovery progress. Another participant shared that the journaling practice helped to release feelings and was a distraction from her pain.
Interpretation and Conclusions
Overall, qualitative feedback from participants was primarily positive and supported acceptability of eMMB and AC. These results complement quantitative data showing feasibility of eMMB in coordination with surgical care reported in our prior analyses.17 Qualitative data provided further evidence that participants perceived an impact of eMMB on decreased pain and coping with distress consistent with comparatively larger quantitative improvements for pain intensity and depressive symptoms for eMMB compared to AC. In addition, participants reported that eMMB relieved tension and worry and helped them fall asleep faster; this was also quantitatively demonstrated by reductions in anxiety and sleep disturbance both groups. This study adds to the growing literature demonstrating that mind-body interventions such as yoga are acceptable when delivered remotely, justifying a future efficacy study of eMMB that incorporates feedback gathered in this pilot work.37–39
Participants in the eMMB group commonly reported enjoying and especially benefitting from the breathing and relaxation techniques. Although future studies could consider focusing on these yoga components, the eMMB movements were selected to be synergistic such that they help enhance breathing and focus the mind. The movements also may encourage early postoperative mobilization which has the potential to improve other surgical outcomes (e.g., functional recovery, length of stay) to be assessed in future work. Some participants thought the level of difficulty of the movements was too simple, whereas others thought the movements were too challenging. There was also mixed feedback about the usefulness of the leg movements following surgery including asking for more lower-body exercises to help with post-surgery soreness. It was simplest for yoga instructors to modify the currently designed in-bed intervention by removing or shortening the duration of movements. Thus, future work may consider additional movements that could be individually reduced or providing options of videos with different levels of difficulty.
Participant descriptions of both high satisfaction with helpfulness of the study team and high adherence to self-directed practice is consistent with the Model of Supportive Accountability.26 Liking study staff (i.e., the therapeutic bond), is emphasized in this model as a particularly important consideration for improving adherence and outcomes in remotely-delivered interventions that provide skills training. Participants perceived study expectations about process as clearly described (process accountability); this clarity was also identified as a facilitator for engaging in self-directed practice. Overall, participants reported being satisfied with the communication bandwidth. Although we initially thought it was important to have research staff available to facilitate the videoconference call, due to increased comfort with this type of technology, future studies may also consider utilizing videoconferencing as a self-directed intervention delivery option. Also, as additionally suggested by participants, future studies could incorporate more systematic contact with the study team such as checking in to allow participants the opportunity to ask questions and request support.
Participant responses regarding the impact of eMMB provide ideas for potential mechanisms to evaluate in further research. For example, participants referred to the eMMB practice as helpful for “taking your mind off the pain” and eliciting a “sense of meditation,” which could be similar to the non-reactivity facet of mindfulness (refraining from impulsive reactions to an experience)40 or reduced pain catastrophizing.41 In addition, participants described eMMB as relaxing or stress-reducing, which are commonly described impacts of yoga that can be a mechanism explaining beneficial effects on outcomes such as pain.42,43 The AC group also reported improvements related to enhanced reflection, which could be assessed with the observing facet of mindfulness.40 Participant feedback suggests that changes can be attributed to the interventions rather than just natural healing after surgery.
As limitations to our findings presented here, we note that our study sample was a subset of those randomized to the interventions; additionally, we were not able to interview participants who had discontinued study engagement. Our sample was not racially and ethnically diverse, which is partially due to recruiting from a single clinic. We will give this significant concern attention when designing a larger future study. For example, we plan to recruit from additional clinics that serve diverse patient groups and consult with underrepresented patients regarding options for better presenting the study during recruitment.
Supplementary Material
Table 2.
Themes, Sub-themes, & Quotations Supporting Acceptability
Themes | Sub-themes | Exemplar Quotes | |
---|---|---|---|
eMMB Group (n=10) | AC Group (n=13) | ||
Intervention feedback (positive) | Enjoyment (breathing, relaxation, movement) | • I particularly liked the breathing and then I’d like the legs; pulling the legs up and practicing the breathing...when you pull the knee up to you. I liked that exercise a lot. (019) • I just liked all the breathing ones—where you just breathe. Afterwards I breathe, but I didn’t really do the arm things as much as I breathe. It seemed like the breathin’ and relaxing things just worked good. (021) |
N/A |
Video helpful | • I put it on my computer, and I used it a few times, but I didn’t really need it...It was very useful to start. Then it was more in the way than not. (028) • I had the video bookmarked on my iPad. So I just brought it up every day. I liked that...I found the music very helpful to the whole thing—puts you in the relaxation mode. And also, I had it propped up, so I could turn my head and see what was happening next, so it was much easier to follow. (003) |
N/A | |
Instructions clear | N/A | • It was very clear. I knew I was supposed to just do it once a day and it dealt specifically with things, I did during the day that might impact my healing experience, I don’t know, it was very clear. (018) | |
Intervention feedback (constructive feedback and suggestions) | Increase focus on breathing and relaxation | • The exercises part right afterwards is good, but if you’re up movin’ around andstuff...you’re getting all your exercise up doin’ laundry or whatever. You don’t need the exercise parts as much as you to the breathin’ to relax. (021) | N/A |
Increase focus on lower body movement | • They tell me that if I walked, it would help me to heal. Maybe if you had some more exercises for the lower part of the body when you have a hysterectomy or something like that. (006) • The other one where you just lifted your arm to your side, I thought that was okay, but I didn’t see it as the most useful thing...After surgery especially, everything was so tight in my belly that I was feeling a little more relief using my legs. It justf felt better. (019) |
N/A | |
Decrease/change movement | • I think that if you’re gonna continue with the body and the arms and legs and stuff, maybe it should be centered to a different kind of surgery rather than one that focuses on objects of where you actually had the surgery take place. I’m not really sure what kind of surgeries that would be. (021) | N/A | |
Difficult to coordinate breath and movement | • I never did get the hang of the pelvis exercise. That one would be, I guess, my least favorite...I couldn’t get my breathing and the movement of my pelvis and back together. (006) | N/A | |
Dislike/disinterest in journaling | N/A | • Well, I’m not very good at keeping a diary, but I did my best. It wasn’t ever confusing, just something I don’t really particularly care about doing, but I did it. (004) | |
Modify instructions to minimize confusion | N/A | • I think the only initial confusing item was that the written documentation, I believe, stated keeping the diary for two weeks, but based on phone calls, in which we discussed the process and how things were going, I was told that I needed to keep it longer, for like a full, I believe, four weeks post-op. Which was fine with me, it just conflicted with the written documentation that I had. (015) | |
Practice facilitators | Practice easy/required minimal time | • I signed up for this study, knowing that there would be some things I had to do, and actually, the whole thing asked a very minimal amount from me. (003) | • Between the surveys and the journaling was about 30 minutes a day, so to me it was simple. (016) |
Routine/structure – same time every day | • They said ‘Pick a similar time.’ What worked for me was between 2–5:00 pm. It’s a nice time of day to wind down a little bit. (003) • I live alone and it seems like in the morning, early, I don’t have the phone calls or anything, so that was my best time to do it. (006) |
• I liked the fact that it was asked of me to do this daily because I know that had it just been record your thoughts on a random basis, or just make sure that you record something two or three times a week, or whatever the case may be; it would’ve been easy to fall off track, get behind, that sort of thing. But to make it a daily routine really helped keep me on track with it. (015) | |
Comfortable/convenient place | • I actually have a recliner in my bedroom that I got when my husband was ill and needed it. It was actually just perfect. I could lay back in it. It fully supported my body, and it was comfortable. I don’t usually sit down and rest during the day, so it was nice. (028) • I did most of mine in the recliner. It wasn’t flat, flat, but I had it stretched out...I didn’t like layin’. I’m not a bed person—just layin’ flat. I just got in the recliner and stretched it all the way out with the feet up. (021) |
• I just had an area in our spare bedroom that we used as an office. I just kept my papers there. Kept everything together, pencils and my paper, and I would just go in there and consider that a work study, time, and place. (015) | |
Minimizing distractions | • I tried to do ‘em whenever I didn’t have my little nephew—when I knew he wasn’t gonna be doin’ nothing...I set ‘em around that. (021) | N/A | |
Flexibility of timing | N/A | • You could have done [the journaling] at various times. It was no specific time to do it. I just usually chose it at the end of the day before going to bed that I usually did mine, so that was pretty simple for me. (016) | |
Practice barriers | Pain, discomfort, fatigue immediately post-surgery | • We tried it once or twice in the hospital and that’s about all we done it...If I recall correctly, when they were gonna come in, I was just in a lot of pain and drowsiness, so it really didn’t work well with us going over everything in the hospital. (007) | • Overall with the diary and everything, I guess waking up from the anesthesia and just the physicality of it initially was a challenge, just trying to get comfortable...Getting past the pain pills and the drowsiness to take the time and remember the time to make a diary. (018) |
Frequent interruptions (hospital) | • The hospital bed was just not a good place to do it and everybody comin’ in...I just had to stop and let them do what they had to do. Sometimes I was able to go back doin.’ Other times I wasn’t. (030) | • In the hospital, people are in and out. You never know when you’re going to be interrupted. It was actually easier to do at home than in the hospital. (015) | |
Difficulty finding time | • I don’t know that there was anything I didn’t like about it, just finding time. I decided it was best to just sort of set a time and do it at the same time. It works better, because if you wait for a good time it doesn’t happen. That’s the hardest part, was finding time. (028) | • I guess just having the time to write down your thoughts in the journal. I didn’t have a set time to do it during the day. I tried to do it before I went to bed each night to get my thoughts together. (002) | |
Difficulty coming up with things to write about | N/A | • Obstacles probably was trying to come up with unique topics for my entry, which I abandoned after a while and made it just my thoughts at the end of the day; how the day went, what went well, what was a struggle or that sort of thing. Once I stopped trying to be so rigid and structured in what I was going to write, and just use it as a stream of consciousness, just writing my thoughts at the end of the day, it became much easier for me to get those documented. (015) | |
Supportive Accountability | Staff helpful, supportive, knowledgeable* | • [Study team member] was very pleasant and very open. If I had any questions, feel free to ask. I really think she truly was very good. I’m a former social worker. I was a social worker for 42 years, and I thought her people-skills were excellent. (019) | • I can honestly say that everyone that I spoke with, everyone that was a part of the program, they were very helpful. They were very resourceful. They knew exactly what they were doing. They were there to help when I needed. I cannot say enough good things about them. They were all a great fit for the program. (025) |
Suggestions for additional contact* | • I did say in my last interview that I did that was online, that I felt that it would’ve been good if once a week they had checked in. Not that I needed them, I just felt like I would’ve felt more supported by them if they had. And I did quite well without them checking in with me. I think for most people, I had a few questions I would’ve asked, but I had managed to mow through all by myself. I think if there was a failure, that was it. I think that it would be good to check in at least once a week after discharge just to make sure everything is going well and there’s no questions. (028) | N/A | |
Communication bandwidth* | • No, I don’t believe I had a video conference. We talked over the phone, but we did not—look, I’ve got an older computer, so I’m not really set up for doing something like Skyping. [Phone] is just what works out better for me. (014) | • We just did the one [video conference] in the hospital, and one of the girls that was on the [study] team...came up and got me ready for the conference, and she set up the computer, and then she stepped out of the room, and the other girl interviewed me on the computer. (009) |
Notes.
Represent Model of Supportive Accountability constructs.
N/A = not applicable.
Table 3.
Themes & Quotations Demonstrating Intervention Impact
Themes | Exemplar Quotations | |
---|---|---|
eMMB Group (n=10) | AC Group (n=13) | |
Relief of tension and worry | • It’s almost like instead of goin’ and talking to somebody, you’re doin’ it all yourself, and it’s just relieving all the tension you have inside of you. (029) • The breathing seemed to help the relaxation part of me and the tensed part of me. That was exactly what I liked better about the whole study, was the relaxation technique brought me a sense of meditation, I guess you could say. It seemed to calm my thinking process, it seemed to calm the way I worried about things, just anxiety in general. (007) |
N/A |
Improved sleep | • It’s relaxing and it helps you fall asleep faster. (030) • It seemed like the breathin’ and relaxing things just worked good...I did those even [when] I was in bed and woke up in the middle of the night and I was layin’ there and couldn’t get back to sleep. (021) |
N/A |
Mental clarity | • My effects that I noticed were more mental with the breathing. That was very, very helpful for me...It helped me center myself, focus in, get rid of distractions, clear my head, clear my mind. (022) | N/A |
Distraction from pain/distress | • It helps with taking your mind off the pain while you’re experiencing it, through the breathing relaxation techniques. It seems to give you time to unwind your mind from constantly worrying about the pain that you’re feeling. (007) • By doin’ this, even when I go in to have things done, I use the breathing a lot, and it seems to help me get through the—if they’re puttin’ an IV in, or I just had my port put in on Monday. That was pretty devastating. If you can breathe through it and kinda get your mind set. I made it through. I used it a lot here at home for pain. For when I got down and depressed I would do it, and that helps. It just gets your mind somewhere else. (029) |
• Some days, even though I have all kinds of pain medications that I could take, I would just sit or lay and just wallow in the pain. [Writing] helped me to acknowledge that, if something bad is occurring, that there are things that could help me feel better, would I go ahead and take medication or I’d just get my mind on a different topic, do some other tasks or something, but just get up and do something more often. (001) |
Decreased pain | • The breathing part and after I did the exercises—a couple of weeks after I had the hysterectomy---yeah, you could tell the pain level went down. I think just the concentration of the breathin’ just kind of relaxes you. I didn’t have a whole lot of pain afterwards...Just the surgery pain, the breathin’ in part helped on that. (021) • The pain was getting lesser, and I wasn’t taking any pain medication. I had stopped that in the hospital. The pain was getting a lot less, then, doing the practices. (030) |
N/A |
Increased reflection | N/A | • Keeping the diary at home just made me reflect to both the time I was at home and things to be thankful that everything was going okay. (002) • It was a way that I could measure my improvement from day one. When everything was over, I was able to go back and look at my diary and see how I had improved physically from the beginning, in the middle of the healing process, more towards the end. It was encouraging to me to see that progress. I liked having that recorded. (018) |
Continued practice | • I found that the breathing techniques helped me really just focus and center myself. I just found those to be extremely helpful. I’ve continued to use the breathing techniques even after I didn’t do the study anymore. (022) | N/A |
Implications for Psychosocial Oncology.
This qualitative feedback supported acceptability of eMMB, which is a scalable intervention delivered in coordination with and designed to enhance clinical care.
Suggestions provided by participants will inform a future efficacy study of eMMB for reducing pain.
Current clinical guidelines specific to postoperative pain management for gynecologic oncology surgery do not include non-pharmacologic approaches; efficacy trials of such approaches are needed to inform recommendations.
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