Results
Participant characteristics
Interviews were conducted with 64 individuals (48 women, 16 men) with chronic low back pain. Table
2 summarizes key participant characteristics.
Table 2
Participant characteristics
Type of treatment
| | | |
Chiropractic | 9 | 6 | 15 |
Acupuncture | 10 | 8 | 18 |
Massage | 10 | 3 | 13 |
Yoga | 12 | 6 | 18 |
| 41 | 23 | 64 |
Gender
| | | |
Female | 30 | 18 | 48 |
Male | 11 | 5 | 16 |
Race/Ethnicity
| | | |
Non-Hispanic White | 31 | 11 | 42 |
Hispanic | 2 | 6 | 8 |
Asian | 4 | 1 | 5 |
Black/African American | 1 | 1 | 2 |
Alaska Native/American Indian | 1 | 0 | 1 |
Unknown | 2 | 3 | 5 |
Our analysis primarily focused on how patients articulated their expectations regarding CAM treatment outcomes prior to experiencing the treatment (for those who had begun treatment, this was based on recall). We found that the words “expectation” and “expect” had numerous meanings depending on the context in which they were used. Participants often used these terms inconsistently. It was not uncommon for the same participant in the same interview to use the terms differently in different contexts. Participants often used a variety of words or phrases when talking about expectations, including expect, realistically expect, think, believe, and hope. These terms may show how a number of concepts such as hope, belief, and being realistic influenced participants’ explanations of their expectations. Furthermore, we found that expectations often changed over time as participants gained more experience with the treatment and their chronic low back pain problems evolved.
Hope versus expectations
Almost all participants queried about their expectations spontaneously responded with comments, both about what they expected and what they hoped for.
I’m hoping that long term that this will lessen my pain and give me a better quality of life. That’s what I’m hoping for. But I’m not going in with an expectation that this is what’s going to happen. (Leslie, chiropractic patient, Seattle)
Although some participants seemed to use “hope” and “expect” as synonyms, when asked directly most made clear distinctions between the two concepts. These distinctions were remarkably consistent across participants. Hope was described as the most optimistic/fanciful end of the outcome range and expectations as the most realistic projections of what might happen based on prior experience and illness history.
Oh, I think realistically, I don’t think it’ll change much. I would hope that it would help, I hope I would have some reduction in the amount of pain that I have, especially at this moment. (Kris, yoga student, Seattle)
No expectations
A small number of participants reported having no expectations for their treatment (although many of those still reported hopes). Some of these participants were concerned that having expectations could lead to disappointment.
I guess my hope would be that the uncomfort in my back is gone . . . but honestly I try not to have any expectations. Because if it doesn’t work then that’s not very much fun, to have a bunch of expectations and it doesn’t work. (Sarah, acupuncture patient, Seattle)
Reluctance to express expectations is another example of the complex relationship between hopes and expectations, since several participants who stated that they had “no expectations” were willing to articulate their hopes.
Well, I hoped it would work or help, for my sake as well as my husband’s, but as far as what I expected, that was totally different, I didn’t expect anything, I expected nothing, nothing one way or another. (Catherine, acupuncture patient, Tucson)
Reluctance to express expectations may indicate the power that participants placed in the act of articulating or giving voice to their expectations. Invoking expectations was viewed as inherently risky. Articulated expectations introduce the possibility of being disappointed, and might invoke a more archaic fear of “jinxing needs oneself by boasting or being too positive”. Similar to the tradition of “knocking on wood” (i.e., “this is going well, knock on wood”), participants may have been reluctant to speak about a positive future because of concern about jeopardizing future positive outcomes.
I learned long ago that expectations usually get me into trouble, so I try not to use expectations. I was in a 12-Step program, such as Alcoholics Anonymous, I have two sons who are into drugs. And expectations of what they should be and how they should treat me and that sort of thing, just led me into trouble. I would say things that I really had no business saying, I would try to get into their business when it wasn’t my business and so, you know, I had [Crying] excuse me, sorry. I had expectations of a long life with my husband and he died, so…I tried to be just realistic. (Jean, acupuncture patient, Tucson)
The few participants who said that they had neither hopes nor expectations attributed this to inexperience with or lack of confidence in the treatment.
Yeah, I mean I guess there was nothing that I really expected, just try to keep an open mind about it, but I was definitely a little like, “OK, what’s this gonna be like?” But really just wanting to learn something new and wanting to make sure it was in an environment that supported, kind of my level and my . . . injuries or issues . . . I know that there’s all kinds of poses and instruction and things like that, but other than that I really didn’t know what to expect. (Roger, yoga student, Seattle)
Well, right, I said I had no expectation really. And I guess I didn’t have any hope really. I mean I hoped my back would get better, but not necessarily -- I didn’t believe that acupuncture would help it. (Daniel, acupuncture patient, Seattle)
Complete symptom resolution/“cure”
Expectations of complete resolution or cure were rare. When we examined all mentions of “cure” or text related to complete recovery, we found very few instances in which study participants articulated expectations of complete pain relief as a result of the CAM treatment they were seeking. The few patients who did mention the possibility of complete symptom relief generally framed this thought in terms of hopes rather than expectations that their pain might be eliminated.
My hope would be for my back pain to be relieved or maybe eradicated that would be great. My expectation is that it could be improved, but not necessarily eradicated. (Adam, acupuncture patient, Seattle)
Many participants expressed the belief that their back pain was a long-term problem.
Maybe it, you know, comes with age or whatever having done things for a number of years, I have no pie in the sky expectation that, oh, we’ll suddenly find something, totally gone, not a problem. I just want to be able to manage it and decrease the amount of time that it hurts, the duration of the hurt. (Jillian, massage patient, Seattle)
A few patients who were already using CAM treatments before entering our study reported that they originally expected that the treatment would make the pain go away or “fix” them. The participant below expressed the hope that she would find an alternative therapy that would provide permanent pain relief. She was careful to point out, however, that she was aware that others, primarily her doctors, believed that she was not being “realistic.”
Um, I think that they don’t think I’m really uh, realistic. Especially with this. . . . I mean I respect and love doctors and I’m very grateful for them but I just feel like they don’t know it all. Especially the more I just look at different situations as far as holistic health. I think that there’s something out there for me that’ll work. I don’t just want to accept the fact that I’m in pain. I don’t- and I don’t want to cover it up with drugs. I want it to be fixed. Something is wrong if I’m hurting and I want it fixed. (Kayla, acupuncture patient, Tucson)
Key domains of outcome expectations
In addition to examining the ways in which participants articulated their expectations of CAM treatments, we examined how they talked about expectations regarding treatment outcomes. Based on the results of our analysis, we grouped outcome expectations into four general domains—pain, function, physical fitness, and mood/quality of life/sleep/wellness. With the exception of the physical fitness domain, expectations in these domains were similar across the different CAM treatments.
Expectations-pain
Pain relief was the outcome expectation most frequently discussed (either spontaneously or when probed) by the participants we interviewed.
Well I would hope-the bottom line is that I want to be relieved of the pain that I have. I would say I don’t have expectations beyond the current pain . . . (Harry, acupuncture patient, Seattle)
However, expectations regarding pain relief were often modest. Participants generally did not expect their pain to go away, but instead talked about “relief” or pain “subsiding,” “decreasing,” or “lessening.”
I didn’t think it would eliminate my pain, I just thought it would help the healing and help, you know, me be more comfortable, but it wouldn’t make it go away. (Greg, massage patient, Seattle)
Expectations-function and participation in meaningful activities
Many participants talked about expectations for functional outcomes, generally articulated as the ability to do meaningful activities, which often focused around work, hobbies, social life, or activities of daily living.
Oh, I would do a lot more walking and a lot more physical things and more yard work, more being with my dogs. I have Basset Hounds so they’re all short. You mostly need to get on the floor with them. And, you know, and I can get down on the floor, it’s getting back up that just brings tears to my eyes and I want to be able to do that. (Nora, chiropractic patient, Seattle)
I’m hoping that just little things, like I can do the walk around the little water pond with my grandkids so they can feel like I’m a part of what they’re doing, you know? I mean I don’t want to go run a marathon, I don’t think I’ll do that anytime soon, I never ran before I got sick, you know what I mean? Just the little things, day to day, being able to vacuum, and clean the bathrooms on the same day, I can’t do that right now, I just want to be able to do, to complete that task, ‘cause I’ve been to the point five years ago where my daughter had to move in with me to dress me because I couldn’t dress myself. (Angie, chiropractic patient, Tucson)
Expectations-physical fitness
Some participants talked about expectations for improvements in their physical fitness, focusing most frequently on muscle strength, flexibility, and overall fitness. We found that, with few exceptions, expectations for increased flexibility, strength and other aspects of physical fitness were mentioned by participants using yoga. Although the link between expectations of physical fitness outcomes with yoga seems common sense, it nevertheless points to an important domain of outcome expectations.
Interviewer: And what effects do you think the yoga will have on your pain?
Participant: Well, I’m hoping that I’ll gain more strength in my core, so that I can support myself better to make myself stronger, to hopefully prevent me from, you know, tweaking my back, I guess. So, I’m just hoping that it will provide me with a little more strength to support my back so that I can do things like vacuum the house or just whatever without just I guess decreasing the risk of triggering the back pain from coming back as often as it has been lately. (Roger, yoga student, Seattle)
Interviewer: To take things back before you went to the yoga for the first time, how did you think your life might change as a result of doing the yoga?
Participant: Well, I was thinkin’ that it’ll, like make me more flexible and make me more healthy because I’ll be more flexible and I’ll get better toned and it’ll just be an all around benefit to me for my health. (Jackie, yoga student, Seattle)
Interviewer: So when you started the treatments, did you expect your life to change very much?
Participant: Yeah, in the sense of become healthier, lose weight, um, be able to exercise more . . . (Phil, acupuncture patient, Tucson)
Expectations-mood/quality of life/well-being
Another emergent domain of outcomes focused around mood, energy and overall quality of life. Expectations under this domain included positive changes in: mood, stress, energy, overall quality of life, sleep, and well-being.
I think it would just help the overall not—or trying not—to slide into being depressed about it. Not have to use up so much strength and energy just to marshal all my horses to carry on even though I hurt so much. (Jillian, massage patient, Seattle)
You know, I think that my life would improve because I am so irritable, it’s just kind of bad. It makes me sad that, yeah, it’s really depressing sometimes, I mean I normally wouldn’t be, and so I think I would just be in a more peaceful place. (Kim, yoga student, Seattle)
I was hoping that it could basically allow me to restore my daily routine and quality of life as it was before the acute episode happened. (Joan, chiropractic patient, Seattle)
Interrelationships among domains
Although we explore the four outcome domains separately, many of the quotes demonstrate the ways in which patients see these domains as interrelated. The connection between pain and function was one of the most commonly mentioned relationships between domains. The following quote, which is typical of many in the dataset, illustrates how participants linked improvements in pain with increased function.
Well I’m hoping it will provide a more permanent relief than what I’m getting now. My expectation is that the pain will subside if not go away entirely. I don’t know how long it’s going to take but I would hope that I can become more active, can return to the active lifestyle that I’ve had. I’ve climbed mountains and have been pretty active and I can’t do that now because I just can’t even go on a hike it’s too painful. (Harry, acupuncture patient, Seattle)
Pain was not the only domain that affected other domains. Increased flexibility was often associated with decreased pain. Stress was characterized as a cause of pain, therefore its decrease could lead to reduced pain and improved function. Relationships were also noted between pain and sleep. Participants noted that pain led to difficulty sleeping, and conversely, that trouble sleeping was a contributor to increased pain.
Although changes in pain were often cited as leading to many other outcomes, participants also saw that other domains might affect pain. In the following example, a participant described how better sleep might lead to decreased pain.
I’m just hoping that I can find a way to if not manage the pain, maybe she can help me figure out ways to relax so that I can sleep better because I’m really exhausted and I think that it’s sort of a cycle where the not sleeping makes the pain worse and then when the pain is worse, you can’t sleep. So I know that they deal a lot with relaxation techniques and I’m hoping that I can at least take that away if the pain doesn’t go away. (Heidi, massage patient, Seattle)
Another patient connected increased energy with increased participation in activities, regardless of pain reduction:
Well, I imagine that I’ll have more energy, more lust for life. Have more desire to do more things. Things that I’m not able to do now. Things that I enjoy. Ride a bike. [chuckles] (Paula, massage patient, Tucson)
The participant below reported an expectation that yoga will improve her mobility in general, which could lead to increased motivation for physical activity and subsequently, decreased back pain.
I think that [yoga] would just help more with my mobility and it wouldn’t be such a nuisance if I were to maybe start practicing yoga on more of a, maybe doing it a few times a week. As opposed to just not doing any kind of activity, rather than just going to work and doing what I do and not stretching and not exercising for that matter, I feel that it probably could help a lot, just with my mobility in that general area and probably like, you know, make me, just more comfortable with moving and not having that continual, “Oh my back!” You know? It feels so stiff all the time. (Patricia, yoga student, Seattle)
These examples illustrate various ways that participants articulated the interrelationship between the outcome domains, demonstrating the multifaceted and dynamic nature of the outcome expectations. Participants viewed their back pain as part of a complex mind-body system in which changes in one domain could have multiple impacts on other domains.
Discussion
We found that participants seeking one of four CAM therapies reported complex and varied expectations when seeking CAM. We grouped participants’ expectations regarding treatment outcomes in several key domains: pain; function (including participation in meaningful activities); physical fitness; and mood, quality of life, and well-being. However, participants seeking CAM did not conceptualize treatment outcomes as discrete or isolated domains, but rather as interrelated, which has important implications for how to appropriately characterize or measure their treatment expectations. Although participants were most likely to expect decreases in pain to lead to changes in other outcome domains, this was not universal and some articulated the expectations that improvements in other outcome domains could lead to decreased pain.
Additionally, the way that people talked about their expectations was highly nuanced, especially in the distinction some people made between hopes and expectations. Our findings are consistent with those of Haanstra et al., who found that patients talked about both “values (what they hoped) and probabilities (what they thought likely)” [
30].
Overall, expectations for pain reduction were modest. Participants rarely expressed expectations for “cure” or complete symptom resolution as primary goals of seeking treatment, although a few maintained some hope for this. Those who did say they
hoped for pain elimination often followed such statements with expressions of more modest expectations and admitted that often, their hopes were perceived as not “realistic” by significant others or health care providers. A few participants who reported having “no expectations” mentioned that having expectations would merely set them up for disappointment. Remaining “open” to the possibility of cure, while carefully mitigating against the possibility of despair is a commonly expressed position for individuals living with chronic pain or illness [
18,
21,
23].
In our study, many responses acknowledged the power of forming and articulating hopes and expectations, and the pros and cons of anticipating a future improved state. Participants were careful to articulate “realistic” expectations. Others scholars have demonstrated that patients often express concerns about having overly optimistic expectations that could lead to disappointment [
21,
23,
31] or even negatively influence (jinx) future outcomes [
31]. In general, patients may be ambivalent about voicing hopes or expectations. Simpson, exploring ways that hope can make patients vulnerable, states: “part of what makes hope hope is the awareness that not every hope is realized” [
19]. Among our respondents, this vulnerability was even more salient for expectations, which were considered more concrete and therefore carried greater risk of disappointment if not realized. Although beyond the scope of this analysis, our findings suggest that the power of words in making something real may impact the way individuals formulate and verbalize hopes or expectations. Social scientists widely acknowledge that words and discourse have the power to shape our reality [
32‐
35]. Patients’ ambivalence and inconsistency in articulating hopes and expectations are important to consider in future research related to treatment expectations. The extent to which individuals might be reluctant to acknowledge hopes and expectations because of fears of future disappointment, or conversely, might overestimate hopes and expectations with the intent of manifesting a desired reality, is an area that needs additional exploration.
A key implication of these findings is the need for more nuanced ways of characterizing and assessing patient expectations. Standardized questionnaires measuring expectations prior to beginning a CAM treatment for chronic low back pain might more fully capture the range of important dimensions of expectations with questions that ask about both hopes and realistic expectations, including for specific outcomes such as pain, function/participation in meaningful activities, physical fitness, mood, and general well-being. Furthermore, our findings might offer insights about other CAM therapies commonly used to treat chronic pain-related conditions. Our findings may translate to other pain conditions with a vague or unknown biophysical explanation but a broad impact on people’s lives, such as fibromyalgia. However, this study has a more limited application to cancer and other terminal illnesses for which patient expectations have been the topic of considerable research. Expectations and hopes for cancer treatment often focus on forestalling death and/or the possibility of being cured [
36] whereas the participants in our study focused on incremental improvements in pain, function, physical health and mood, quality of life, and well-being. Additional work is needed to explore the applicability of these findings on a broader range of symptoms, conditions and/or illness categories.
The limitations of this study include that the findings are based on interviews with a volunteer sample recruited through CAM providers and online advertising in two geographic areas. This might have led to sample selection bias or a sample that might not reflect the full range of experience or variability of a larger, national sample. However, we found that similar themes emerged across the two sites. Another limitation is that some participants received CAM therapies prior to the interview and we depended on retrospective accounts of their expectations. However, we saw similar themes in pre-treatment outcome expectations irrespective of whether participants had already engaged in treatment. Despite these limitations, the results provide valuable insights into the nuanced and complex ways that participants articulate expectations of treatment outcomes when starting a CAM treatment for chronic low back pain.
Authors’ contributions
CH helped design the study, lead development of the interview guide, interviewed participants, coded and analyzed data, lead discussions to interpret the data and drafted the manuscript. KJS, the Principal Investigator, conceived of and lead the design of the study, assisted in the interview guide development, read transcripts and helped interpret the data and draft the manuscript. EE assisted in the interview guide development, recruited and interviewed participants, facilitated tape transcription, coded and analyzed data, helped interpret the data and draft the manuscript. DCC, JT helped design the study, participated in the development of the interview guide, read transcripts, and provided input on coding memos and interpretation of the data, provided input on drafts of the manuscript. DC participated in the development of data analysis plan, coded data, assisted in pulling data, provided input on coding memos and interpretation of the data, provided input on drafts of the manuscript. LS interviewed participants, coded and analyzed data, provided input on coding memos and interpretation of the data, provided input on drafts of the manuscript. CR helped design the study, participated in the development of the interview guide, read transcripts and helped interpret the data and draft the manuscript. All authors read and approved the final manuscript.