Get 20M+ Full-Text Papers For Less Than $1.50/day. Start a 14-Day Trial for You or Your Team.

Learn More →

Factors in the Building of Effective Patient–Provider Relationships in the Context of Fibromyalgia

Factors in the Building of Effective Patient–Provider Relationships in the Context of Fibromyalgia Objective. Fibromyalgia patients face particular challenges in building relationships with health care providers. In this study, we examine, from patients’ perspectives, factors that influence the formation of effective patient–provider relation- ships. Design. This research employed a qualitative approach to analyze data collected from a study that employed semi- structured interviews. Methods. Multiple methods were used to recruit 23 fibromyalgia patients for interviews. Semistructured interviews were conducted to explore how participants’ information behaviors, including their communi- cation with and relationships to providers, changed over time. The interview data were analyzed using a qualitative ana- lytic method based on interpretative phenomenological analysis and constructivist grounded theory. Results. We identi- fied three important factors that influenced the building of effective relationships: patients and providers’ interactions involving information, identifying health care providers that fit patients’ needs, and realizing shared responsibilities. With regard to information, we described three important themes: information gaps, providers as educators/facilitators, and collaborative information behavior. Conclusions. Understanding of the key elements of relationship development be- tween patients and providers can be utilized in various ways to improve clinical care. First, the knowledge gained in this study can inform the design of patient education materials that assist patients to identify providers that fit their needs, prepare for consultations, and develop realistic expectations for providers. The findings of this study can also inform the design of resources and tools to enable clinicians to communicate and relate better with their patients. Key Words: Patient–Provider Relationship; Patient–Provider Communication; Information Interactions; Collaborative Information Seeking; Collaborative Problem Solving; Fibromyalgia physicians. At the outset, fibromyalgia patients often ex- Introduction perience a lack of understanding from medical practi- Fibromyalgia syndrome is a chronic, noninflammatory tioners and others around them [11–15]. They have condition that is characterized by musculoskeletal pain, reported feeling dismissed and disbelieved [15–17]. impaired cognitive function, disturbed sleep, fatigue, and Research analyzing online discussion content by fibromy- depressed mood without a well-defined underlying organic algia patients has also reported that patients expressed disease [1–3]. Estimates of the prevalence of fibromyalgia frustration at doctors and counseled each other to switch differ worldwide, but generally vary between 2% and 5% to more understanding doctors [16]. [4–7], and the experience of fibromyalgia is persistent, Many of the difficulties that fibromyalgia patients ex- with patients reporting similar symptoms a decade or more perience have also been reported by patients with chronic later [8,9]. Chronic pain has been identified as the key pain. Chronic pain patients are often labeled as hypo- symptom that influences many aspects of patients’ lives, in- chondriacs, avoided, hurried by physicians, and given in- cluding their personal and professional relationships, phys- adequate time to discuss their problems [18]. Other ical activity, work, and social commitments [10]. patients have reported feeling forced to be overassertive Patients who suffer from fibromyalgia often and look sickly in order to be taken seriously [19] and experience difficulties in their interactions with their feeling like their physicians did not understand their V 2019 American Academy of Pain Medicine. This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License(http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contactjournals.permissions@oup.com 138 Relationship Building in Patient–Provider Communication 139 feelings toward taking medication and just assumed they related discussion forums, and Twitter. A recruitment were seeking out more prescriptions [20]. goal was established to recruit a sample that was diverse Tensions in relationships may also arise from contrast- in terms of three characteristics: age (<47 years and ing needs and desires in patients’ and primary care practi- 47 years), illness duration (4 years and >4 years), and tioners’ perceived roles [21], including patients with social media participation style (nonuser/lurker, infre- chronic pain and health care providers having opposing quent participator, active participator), with substantive attitudes and goals, with patients seeking “to be under- representation in each of the subcategories per category. stood as individuals” and have their pain concerns legiti- Though the focus of this study was on patient–provider mized, while their health care providers may place a interactions rather than health, the Revised Fibromyalgia greater emphasis on diagnosis and treatment [22]. There Impact Questionnaire was used as a brief assessment of may also be differences in terms of patients’ and providers’ participants’ illness severity [29]. orientation toward illness (biomechanical vs biopsychoso- cial), and treatment goals and expectations [23]. Interviews There are other factors that may exacerbate issues Data for this analysis were collected as part of a study on that patients experience as they seek out help from health the relationship of information behavior, knowledge, and care providers. For example, receiving a diagnosis can be communication over time in fibromyalgia patients. The one of the biggest obstacles to receiving treatment. results of this study are reported in Chen [30]. Because Survey research has reported that a significant portion of the study examined change in information behaviors and physicians, including both primary care providers and knowledge representations over time, participants were specialists, do not have adequate knowledge of the fibro- also asked to draw a timeline representing their illness myalgia diagnostic criteria [24,25], and that up to 54% journey. Each participant was interviewed about their of physicians experience difficulty diagnosing it [24]. health history, information seeking and use, and social Fibromyalgia patients also experience the need for in- media participation. The first author conducted all of the formation. Patients are uncertain about the definition of interviews. The first interview focused on participants’ the syndrome and the symptoms that are part of fibromy- health history and information seeking and use, which in- algia [11]. Fibromyalgia patients seek information on a cluded their communication with their health care pro- diverse set of topics, including symptom management, viders. Participants were asked about the information treatments, medications, the cause of fibromyalgia, needs that they had, the information they encountered, health outcomes, methods to cope, and impact on daily and the information that they would have liked to have, life [26–28]. Although the majority prefer acquiring in- as well as their interactions with health care practi- formation face-to-face from providers, a significant pro- tioners. The interview followed a semistructured format portion of participants seek information from different in which the interviewer encouraged participants to elab- sources because of a lack of information, indistinct infor- orate on the information sources and encounters they mation, or lack of attention from health care providers. had, which led to extensive discussion of patients’ inter- In this article, we take a qualitative approach to exam- actions with their providers and facilitated the present ining patient–provider interactions using data that were analysis. The interview guide is provided in Box A1. collected during an interview study focused on fibromy- The second interview was used to explore partici- algia patients’ illness journeys. Similar to the findings pants’ social media participation histories. As this paper reported in this literature review, study participants focuses on thematic analysis of the interview content re- shared stories of negative interactions with physicians, lating to patient–provider communication, the second in- particularly early in their illness journeys. However, in terview will not be discussed in further depth. The mean contrast to this literature, study participants were eventu- total interview time per participant was two hours and ally successful in building long-term relationships with 26 minutes. their physicians. We explore, from the patient’s perspec- tive, key factors that influenced the formation of these relationships: information interactions, finding pro- Data Analysis viders, and realizing shared responsibilities. Interview transcripts served as the basis for this analysis. The content was analyzed using Atlas.ti, version 1.0.1, by the first author. The qualitative analytic procedure Methods was informed by two approaches: interpretative Sample and Recruitment phenomenological analysis and constructivist grounded Multiple recruitment mechanisms were used to recruit a theory. The first step of our analytic procedure involved convenience sample that self-identified as having fibro- line-by-line coding. In grounded theory methodology, myalgia (N¼ 23). The recruitment mechanisms included line-by-line coding ensures that the researcher stays close an email contact list from a previous survey [27], a uni- to the data, verifies and saturates categories, and mini- versity listserv, face-to-face support groups, health- mizes the potential for missing categories [31,32]. The 140 Chen and Swaminathan Table 1. Sample characteristics constant comparative method, which involves constant comparisons of instances that have been assigned the Characteristic Category No. % same category and categories with one another, was used Age, y to ensure systematicity in the analytic process [31,33], 21–30 4 17.4 and care was taken to ensure that the categories were 31–40 4 17.4 well developed and that there was conceptual density 41–50 2 8.7 [34]. The codes were conceptualized as a nested hierar- 51–60 7 30.4 61–70 5 21.7 chy, as is customary in grounded theory [35]. In this as- 71–80 1 4.3 pect, our analytic method also inherits from Gender interpretative phenomenological analysis, in which the Female 22 95.7 codes are arranged in themes and subthemes [36]. This Male 1 4.3 hierarchical structure facilitated both organization of the Race/Ethnicity White 20 87.0 codes and consideration of whether there were gaps in Black 2 8.7 the conceptualization of categories. Lastly, it can be used Asian 1 4.3 as a tool to facilitate scrutiny of codes, clarify research Education thinking, and map research activities, among other uses Some college 2 8.7 [37,38]. In this study, memos were used to consider how 2- or 4-y college degree 1 4.3 in progress codes relating to patient–provider interactions were re- 2- or 4-y college degree 8 34.8 lated, organize them, and consider what gaps might still Graduate degree 11 47.8 exist in the codes and categories. Graduate degree 1 4.3 The primary aim of interpretative phenomenological in progress analysis is to explore how participants make sense of Employment status* Student 11 47.8 their world and focuses on participants’ interpretations Employed full-time 11 47.8 of an object or event [39,40]. Grounded theory focuses Not employed 3 13.0 on how social and psychological processes occur in a Retired 9 39.1 given environment or situation [41,42]. Our analytic pro- Received disability cedure was based on these two approaches because lived Yes 8 34.8 No 15 65.2 experience, as well as social interactions and context, Illness duration, y were important foci for the study. 4 3 13.0 To protect the identities of the participants, each partici- >4 20 87.0 pant was assigned an identification number. There were Social media participation four pilot participants; thus, the 23 participants in the study Nonuser/lurker 9 39.1 Infrequent participator 5 21.7 will be referred to as P05-P27. The study protocol was ap- Frequent participator 9 39.1 proved by the Institutional Review Board. All participants gave written informed consent for their data to be used in *Participants may belong to more than one category. publications at the time of the interview. The term “lurker” refers to a person who reads social media content but does not author content. practitioners, rheumatologists, and neurologists. Results Alternative medical practitioners included chiropractors, Sample acupuncturists, massage therapists, physical therapists, The majority of the sample was comprised of white and naturopaths. Participants usually established long- women, which is consistent with prior studies relating to term relationships with multiple health care practi- fibromyalgia involving larger samples [9,43]. The partici- tioners, and many assembled a team of health care practi- pants resided in nine different states, Washington, DC, tioners that they relied on. For some, this included a team and Australia. The use of multiple recruitment methods of primarily allopathic practitioners, and for others, a led to a sample that varied in terms of age (range ¼ 21– combination of practitioners of various traditions and 79 years) and illness duration (range ¼ 1–58 years), perspectives, including allopathic, alternative, and though those with short illness durations were underrep- integrative. resented. The sample also varied widely in terms of ill- ness severity. Sample characteristics are depicted in Information Interactions Table 1, and a brief synopsis of each participant’s age and health history appears in Table A2. In patient–provider communication, information plays Health care practitioners played a prominent role in an important role. Patients both experienced gaps in in- the interviews of all participants. There was great diver- formation, as well as created gaps, in their interactions sity in the types of practitioners that were seen. In terms with providers. These gaps were not conducive to build- of allopathic traditions, patients generally saw general ing successful relationships. When successful Relationship Building in Patient–Provider Communication 141 Table 2. Characteristics of patient–provider interactions and practice implications Theme Observed Phenomena Practice Implications Information interactions • • Information gaps Lack of respect from providers Patients can make an effort to present infor- Lack of clear answers mation to providers • • Lack of progress in treatment Providers should create a space where Lack of information led to patients seeking patients feel that they are being respected their own information to bring to providers and their information needs are being Patients withhold their diagnosis from pro- addressed viders to obtain more information • • Providers and educators and facilitators Providers refer patients to additional infor- Providing practitioners with consumer- mation sources friendly information sources could be helpful Affirming the value that providers offer in sharing and educating could instill a sense of purpose • • Collaborative information seeking and prob- Use of multiple information sources Physician should be open to information lem solving Process is dialogic (may involve multiple in- that patients bring into the consultation formation interactions between the clinician Efforts should be made to facilitate continu- and the patient and occur over multiple ity of information exchange over time, in- clinic visits) cluding the provision of digital tools Multiple providers deal with different aspects of condition Developing the patient–provider relationship • • Identifying health care providers Finding and building relationships with Patients can receive assistance on identifica- trusted providers took a long time tion and selection of providers • • Patients identified criteria for selecting Providers could be made aware of patients’ providers expectations Patients developed realistic expectations • • Sharing responsibilities Patients learned how to utilize consultation Both patient and provider should be respect- time effectively ful of each other’s knowledge Patients could be provided with information about how to prepare for their appointment relationships were established, participants were enor- [pain management providers] couldn’t understand that, I mously appreciative of the role that providers played as guess, because they have so many people who come to educators and facilitators. Patients and providers also them just wanting the meds. I’m like I don’t just want worked together in collaborative information seeking you to mask it. I want to know what the problem is.” and problem solving. We discuss each in turn. There were situations in which participants felt that there was information that they could have been told that would have made their journey easier. For example, Information Gaps two participants mentioned that they were prescribed In this study, participants spoke of two main types of antidepressants for pain, and they did not really under- communication gaps: patients experiencing frustration stand why. In another case, a participant discovered that with the lack of information from practitioners and her physician had withheld his suspicion that she had fi- patients’ withholding of information. When asked about bromyalgia. She had gone to a chiropractor, who sug- information that they received from practitioners, many gested that she might have fibromyalgia: said that earlier in their journey, they did not receive I said to the general physician, “This chiropractor thinks much information. P05 said, “It was a very frustrating I have fibromyalgia.” And he said, “I do too. I just did time, because nobody could give me clear answers. They not want to make that diagnosis because I was afraid it were like, oh, we think it’s fibro, and once they tell you would impact your health insurance in the future.” So it’s fibromyalgia, then that’s it.. .. They were like, okay, that was really shocking to me, and I kind of understood that’s it. Don’t have much to do for you.” Some partici- later what he was talking about, but I still didn’t think pants reported being told that their symptoms were all in that was right at all not to tell me what he thought my their heads (e.g., P06 and P12). Many participants be- problem was. (P06) came frustrated at being prescribed pain medications and not receiving explanations for what they were experienc- Conversely, P10, who had been diagnosed with both ing. For example, P24 said, “I was like, I don’t want to fibromyalgia and psoriatic arthritis at different times, mess with those hard pain meds. I just don’t. And they 142 Chen and Swaminathan related her experience of being diagnosed with psoriatic orthopedist and did not go see him again. Thus, fibromy- arthritis: “When I was diagnosed.. .he called me at home, algia might be used as an explanation of some symptom personally. He also talked to my parents, but he actually that patients were experiencing, but this explanation was talked to me on the phone, and I went into his office and not only empty, it also left patients feeling that they had we talked. Face-to-face, which I think is an appropriate not been treated with respect. thing to do, you know.” There were cases in which the lack of information spurred participants into action. P22 became fed up with Health Care Providers as Facilitators and the lack of progress in terms of her health situation: Educators Though there were examples of information gaps and in- I want to move on. I either want to be better or at least formation withholding, participants also related exam- understand what the problem is and what can be done ples of the knowledge that health care providers shared about it, not this holding pattern where everything seems or other types of growth that they facilitated. For exam- to be just piling up, and we’re getting nowhere.. .. ple, P16 talked about how her provider shared research There’s a lot of confusion, a lot of information coming articles with her, which enabled her to learn more and and going, and nothing is happening. It’s just sort of de- engage in further information seeking. P19 said that her struction. (P22) provider connected her with a hypnotherapy intervention She decided to go see an orthopedic specialist that she that was extremely beneficial in terms of her health man- had seen for a long time for advice, who in turn referred agement. P26 remarked that her physician provided her to a rheumatologist who diagnosed her with fibromy- invaluble assistance in terms in her process of learning algia. She called this a “green light” because it confirmed how to manage her health: what she already thought she had. P13 said that the lack Ninety percent of what [the integrative physician] has of progress in his medical consultations led him and his told me I knew already, but the 10% that I didn’t know mother to actively seek information: “We were both just that he’s been able to help me learn is priceless. It’s kind digging around because the doctors were being completely of like losing that last five pounds when you’re on a diet. unhelpful. So we were trying to find out what’s actually The first 20 are easy, but boy that last five are just hard, going on so we can be prepared with options to suggest to hard, hard.. .. It’s the hardest part, but it’s priceless. It’s the doctor when we actually go there.” priceless and I could never have figured it out on my The previous examples describe situations in which own. (P26) participants described becoming more proactive and en- gaged in seeking answers due to information gaps. There These sentiments were echoed by P14: “She’s just were also situations in which information gaps were stra- been a really wonderful source, and she educates me. I tegically created by patients in order to get at answers to think doctors need to share.” their questions. For example, some participants withheld This educational process can involve lessons that may that they had been diagnosed with fibromyalgia in se- initially seem counterintuitive due to how illness and the lected clinical interactions. Often, this was because par- treatment of illness are portrayed in society. For example, ticipants perceived that fibromyalgia had a tendency to P12 recalled a conversation that she had with a become the physician’s explanation for a phenomenon nutritionist: that the patient experienced, and the patient wanted a clearer medical explanation. For example, when P12 con- Nutritionist: Stop fighting. You’re putting all your energy sulted a physician about some health problems she was into fighting. You don’t feel good, and you have some experiencing, the explanation turned out to be hypogly- part of you that feels like you have to fight, but you’re cemia. She did not tell her physician that she had fibro- wasting your energy fighting. myalgia, but her physician ended up asking her if she had P12: But I’ve had to fight this. That’s what you’ve been fibromyalgia. When I asked P12 why she did not tell the told.. .. ‘Don’t give in. Fight it!’ physician initially, she replied, “It’s not that you’re Nutritionist: No! You need to take.. .. You need to take embarrassed by it, but you’re like, what do they think? all your energy and put it towards something, towards Do they treat you differently? And in that case, I was re- growth! ally trying to figure out what was wrong. I didn’t want somebody to say, ‘Oh, it’s fibromyalgia; don’t worry This led to a fundamental change in her understanding about it.’” of how to manage her health: “I think that was a really P12’s testimony hints at something that P16 states big turnaround, to think about: ‘This isn’t about battling much more directly: “[The orthopedist’s] quote was: something. Which, that’s always the word we use medi- ‘People with fibromyalgia just get tendinitis for no rea- cally, always. You’re ‘battling’ cancer. You’re ‘battling’ son’.... That attitude of people with fibromyalgia, as heart disease. It was more like, ‘How do you make it part though we were some weird class of people, just get of you, but you’re still growing and thriving? It’s just a tendinitis.” P16 said that she did not believe that piece of you.’” Relationship Building in Patient–Provider Communication 143 Many participants spoke of information that they had ultimate responsibility for that decision resting with the become aware of through mainstream media channels, patient. including news articles, books, television, and others, Besides this type of iterative process of information that was produced by health care providers, physicians, seeking, participants also mentioned looking up informa- and researchers. In some cases, it led to participants sub- tion online with physicians in consultation, and one par- sequently seeing those providers (P07 and P23), and P15 ticipant also said that she looked at her electronic health exchanged e-mails with the researcher, saying that she record with her physician. Another participant, P27, said had changed her life. Though this type of information ex- of her physician that what she liked about her was that change is different than one-on-one patient–provider “she has a curious personality.. .. The first appointment, relationships, one might still think of it as an important she’s like, ‘It sounds like what you’re dealing with is re- type of connection, which results in both acquisition of ally hard,’ like, ‘Let’s try and figure out together what it concrete health knowledge and affirmation. is.’” Collaborative Information Seeking and Problem Identifying Health Care Providers Solving As stated earlier, participants in this study, as in past lit- Participants also reported examples of collaborative in- erature, experienced difficulties in finding health care formation seeking and sharing. One point at which this providers that they could work with. Many participants’ often occurred was concerning a person’s diagnosis. initial medical encounters were similar to those reported Quite a few participants brought up the possibility of fi- in previous literature, in which physicians exhibited skep- bromyalgia to their doctor or another health care practi- ticism regarding patients’ symptoms. For example, one tioner. Interestingly, there were also several that said that day P06 found her wrist extremely swollen and made an they thought they had fibromyalgia, but they did not tell appointment with a rheumatologist. By the time of the their physicians because they knew that they were not appointment, the swelling had gone down, and the rheu- supposed to self-diagnose. matologist told her it was “all in [her] head” (P06). P13 One example of a collaborative process toward diag- said, “They [doctors] either thought I was being a hypo- nosis was P13’s experience. P13 first found out about fi- chondriac or something or didn’t believe me at all,” and bromyalgia from his mother, who referred him to a P23 said that doctors thought that she was seeking drugs. website describing the condition. He thought it seemed Thus, participants realized the importance of “vetting plausible, and mentioned it to the physician, who looked doctors”: into it in more depth. He and the physician engaged in a dialogue in which the physician told him that he fit the Cross that one off! That’s the wrong one! (P12) criteria for both chronic fatigue syndrome and fibromyal- If I can’t find somebody that will work with me in a col- gia, but the physician ultimately diagnosed him with fi- laborative manner, then it’s all over. I’ve just got to point bromyalgia because it encapsulated more of his where I won’t put up with it. (P22) symptoms. They also identified characteristics that were impor- Participants also engaged in collaborative information tant to them in their search for health care providers. seeking and/or problem solving with their health care Participants looked for open-mindedness, providing in- providers. P17 learned of an experimental medication for formation, and leaving it up to participants to make their alopecia, and she mentioned it to her dermatologist. The own decision: dermatologist said that the medication had not been ap- proved for women and that she was not comfortable pre- When I’m vetting a doctor, I’m looking for someone scribing it. P17 ended up trying something else after that who’s open-minded, looking for somebody who’s not go- visit, and the next time she went back to see this physi- ing to just pooh-pooh acupuncture, or alternative practi- cian, the physician had done her own research and was ces, but also someone who’s not just going to like, “Here. then willing to prescribe it. But by then, P17 had thought You need these 50 tests”.. .. I really appreciate people it over and decided it was too risky for her. who give me information, give me options, and then let This example illuminates several points. First, it is me decide for myself. Because like, I want to understand; clear that both parties are engaged in the information I don’t want to be told. I also want to choose for myself. seeking process and that their actions are dialogic: infor- (P19) mation seeking and communication on the part of one results in reflection and subsequent information seeking The theme of physicians pushing pain medication was on the part of the other, and vice versa. The physician is common and undesirable: “I’m very fanatic in some open to receiving and processing information offered by ways, about vetting doctors, because I don’t want to be the patient, and the patient also reflects upon the physi- with someone who’s just going to throw pills at me” cian’s opinion. The parties explore the information to- (P19). Participants appreciated that providers allowed gether and ultimately arrive at a decision, with the them to make their own decisions: “She relates to me. 144 Chen and Swaminathan Your doctor’s just going to be looking at your illness. So She doesn’t just try to push medicine on me. She’ll sug- you need to look at yourself until you can find a physician gest something and I’ll say yea or nay, and she’s good who practices integrative medicine or functional medi- with whatever I decide. I never feel like she’s rushing. I cine.. .. You can probably count those on both your never feel like she has not got time for me” (P14). hands in XYZ County, and they’re not always covered by P05 says, she has “had doctors that are very dismissi- insurance. So you need to take things into your own ve.. .who don’t like it when you ask questions. I had one hands. (P15) doctor who was just like, ‘Take this medication,’ and didn’t want to talk about it. ‘At least it’s going to make Thus, one can see that, overall, participants came to you feel better; it’ll take away the pain. So stop asking view their health management as a team effort, involving me all these questions.’” These encounters led her to real- multiple practitioners, but also an individual one. ize that she needed to work with doctors who listened to A change in participants’ expectations of their health her and were receptive to her questions. care practitioners also led to smoother patterns of Thus, in summary, participants developed various cri- interaction: teria for their providers, including taking the time and ef- fort to listen to patients, being open-minded, sharing I also figured out that doctors are not going to fix me. information and options, and not “being pushy.” Initially it was just like, “Oh!” [Claps hands.] “Magic pill, magic pill, magic pill.” But now I realized it’s more like, they ease, they make it more comfortable for me to just do day-to-day, and so I don’t have ridiculous expect- Shared Responsibilities ations of what they can do for me, but also.. .and they’re As time passed, patients also developed a clearer under- human. I think also because I’ve learned that, that it’s a standing of what they expected of the patient–provider lot easier for me to interact with doctors and just ask relationship. Participants were looking for “partnership them questions, and if they’re the kind of people who are medicine,” not “here it is, go do it” (P12). Though not open to that, then I need to switch. (P05) patients had expectations of doctors, they also realized that they needed to do their part: In a seven-minute appointment, they’re going to listen to Discussion you for the first two minutes, and then they’ve already In this study, we explored the question of how fibromyal- drawn their conclusion. That means as a patient, I need gia patients build successful relationships with physicians to go in clear and concise, not wandering.. .‘cause I’ve over time. We identified key factors that influenced the only got his attention for two minutes.. .. I take paper in formation of these relationships: information interac- with me always. Sometimes I’ve written things down I tions, finding providers, and realizing shared responsibili- want to ask ahead of time, and then I take notes. (P12) ties. A successful patient–provider relationship includes Participants took steps to set an agenda for initial con- multiple elements, in which patients and providers each sultations. The participants spoke of “interviewing” doc- contribute. On the one hand, patients learn to articulate tors and counselors, of spending the first appointment their needs better over time and develop the ability to rec- just chatting with doctors rather than having a physical, ognize health care providers that they can work with; to see if the relationship would work. P05 and P06 men- they also recognize that they need to do their part. tioned that they appreciated physicians who took time to Practitioners, in turn, are open and listen to patients, give go through their medical history with them on the first serious consideration to the information that patients visit. bring to the consultation, and engage them in collabora- P12 believes that partnership medicine involves a rela- tive problem solving and dialogic information interac- tionship in which both parties have responsibility: tions. Gaps in knowledge, created by both patients and “Doctors know some things, and you know some things. practitioners, impede productive clinical relationships. And you’ve got to have somebody who lets you put that The findings of this study have various implications together, ‘cause you’re the expert on your body, and they for knowledge translation. As this study has shown, it might be the expert on some treatments, but then you’re can take time for patients and providers to build success- the one that has to sort of be your own case coordinator ful relationships, and there are ways that the process can and monitor your body” (P12). This was not a role that be facilitated. First, patients gradually came to under- participants naturally took on, and it took time to learn: stand what they needed from providers and also learned “It took me a long time to be the manager of my own what they could do to facilitate effective consultations. health system. I expected doctors to kind of manage my This process could perhaps be facilitated through the de- life for me. It took me a long time to realize that, no, I’m velopment of patient education materials that assist in charge of this. The doctors that work for me are a patients to identify characteristics that they consider im- team, and I manage that team” (P14). It is not always portant in selecting a provider, to help them communi- easy to put that team together. P15, for example, said: cate with providers, and to set realistic expectations. Our Relationship Building in Patient–Provider Communication 145 study also illustrated the dialogic nature of information preferences, which has reported that many patients prefer interactions and the diversity of information sources that an open style of communication [49] and prior research may be involved, including the role that individuals on trust in rheumatic conditions [50], in which physi- around patients play in information interactions. We can cians’ sensitivity, informativeness, and patient-centered provide tools for patients to organize the information behavior have been shown to predict trust. Additionally, that they gather from different information sources and this study showed that successful long-term relationships communicate questions to providers. Usage of tools such that patients shared with providers often involved mutual as the notes mentioned by P12 can help to clarify stories understanding and forbearance. Participants in this study and questions that patients may have and identify topics did not always get what they wanted. In particular, they for providers to address in the interaction [44]. recognized that providers were “human” and that there Providers, in turn, could receive more training in com- were structural constraints due to the insurance plans municating with patients. For example, they might re- they belonged to and guidelines providers needed to ad- ceive additional training in shared decision-making and here to because of the health care systems they operated in reducing high oral literacy demand in their communi- in. Mutual understanding is important because better cations, which has been shown to be detrimental to pa- physician–patient collaboration has been reported to be tient learning [45]. Previous research on providers’ associated with better patient adherence [51], relation- perspectives of the patient–provider relationships in ship continuity is foundational for experiencing informa- chronic pain has also reported that providers experience tional and management continuity [52], and continuity strain and uncomfortable relationships with patients of care has been shown to be associated with patient sat- [46]. Helping providers to recognize their contributions isfaction [53]. can perhaps alleviate part of this burden. Additionally, However, what this study highlights is the need for they might receive materials that acquaint them with in- both patient and provider to realize that the other is not formation that fibromyalgia patients may desire, includ- a static entity. As this study has shown, participants learn ing evidence-based information about complementary a great deal over time, and this evolution can involve a and integrative health (CIH) modalities. Table 2 presents clearer self-articulation of what they need from pro- an overview of the themes identified in patient–provider viders. They are not looking for providers to be interactions and implications for practice. “perfect,” but “partners.” Additionally, they may also This study also has implications in terms of implica- shift from expecting physicians to “solve their problems” tions for information provision. As has been observed in to an expectation of a shared responsibility. past literature, the increasing availability of health infor- Understanding on the part of both parties can facilitate mation on the Internet has empowered patients to seek more sustained, interactive exchanges in which the pa- information and play a more active role in their care. tient and provider work together to solve problems over Though it has been argued that pre-encounter online in- time. formation searching can have a negative effect on consul- Extant literature has argued that educational interven- tations, the literature has also shown that it can have a tions for pain can lead to improvements in pain manage- positive effect, empower patients to be more involved in ment [54]. An explanation that resonates with a patient the decision-making process, and increase patients’ com- can both empower them and enable them to move for- mitment to compliance [47]. In this study as well, we saw ward [55]. Conversely, explanations and diagnostic that patients both desired and played an active part in labels can not only lack meaning [11], but also offend problem solving by doing research before consultations patients [56]. Thus, one question that might arise about and bringing what they had learned into the consultation. this sample would be how providers’ explanations of Participants also engaged in dialogic information behav- pain affected participants’ behavior. Though we did not iors with practitioners, following up on leads provided systematically investigate this question, we considered by their health care providers. Though it may seem that this question in light of the experiences presented in this these discussions might take more time, the statements article. First, we have related examples in which partici- made by participants such as P12 show that cognizance pants were frustrated when providers offered up fibromy- and consideration for the limited time that providers algia as the cause for what they were experiencing, were have and agenda setting could facilitate a concise and ef- unwilling to explore or discuss alternative explanations, fective consultation. We are increasingly seeing innova- and focused on prescribing pain medications. This not tions such as secure messaging and OpenNotes [48] that only left participants feeling that they still wanted facilitate shared information sources between patient and answers, but also led to increased information seeking, provider. The development of features that reduce the withholding information from providers, and provider burden of the provider to provide information sources switching. Conversely, there were also situations in and/or increase patient comprehension could be which patients reported reacting positively to transpar- invaluable. ency from providers and the knowledge they shared, The results of this study are consistent with prior re- which occasionally also led to episodes of collaborative in- search on fibromyalgia patients’ communication formation seeking. Lastly, changes in patients’ perspectives 146 Chen and Swaminathan on health and well-being occasionally also led to better and facilitator, collaborative information seeking and communication with providers. These experiences high- problem solving, identifying health care providers, and light that the building of patient–provider relationships is engaging in partnership medicine. Bridging information a gradual and dialogic process in which open communica- gaps, collaborative information seeking and problem tion, information sharing and collaboration, and adopting solving, and partnership medicine can be invaluable in a long-term view can be of tremendous benefit. forging successful clinical relationships. This study has various limitations. First, this study in- Patients and providers both need to contribute in or- volved a limited sample of participants who mostly re- der for clinical relationships to be successful. Training sided in the United States, and thus the experiences and education can be helpful. For patients, providing in- related by participants are likely to reflect elements of formation about selecting and working with providers clinical care in the United States. For example, most but and how to make the most of clinical consultations can not all participants who developed symptoms more re- improve productivity. For providers, learning more about cently had shorter diagnosis times and experienced more patients’ expectations can help them to provide better understanding from their physicians. We suspect that care. these changes may reflect the change in diagnostic crite- ria for fibromyalgia in 2011 [57]. In addition, the partici- pants in this study were primarily female and white. The Acknowledgments interactions that fibromyalgia patients of other back- grounds may have with their providers may be different; The authors would like to thank the participants for this is an important area for future research. sharing their experiences in this interview study, and Dr. This study also involves the retrospective recall of pa- Barbara M. Wildemuth at the University of North tient experience. Participants in this study shared their Carolina, Chapel Hill, for her feedback on successive experiences of building relationships with providers per- revisions of the manuscript. haps years or decades after they began dealing with their conditions. The clarity of participants’ memories and their References salience might change over time, and the accuracy of their memories could also be an issue. In addition, this study is 1. Wolfe F, Clauw DJ, Fitzcharles M-A, et al. The focused on patients’ perspectives, and providers may have American College of Rheumatology preliminary diag- had different perspectives of their interactions with these nostic criteria for fibromyalgia and measurement of patients. Although interviewing the providers also would symptom severity. Arthritis Care Res 2010;62 have been valuable, this was outside the scope of the cur- (5):600–10. rent study. 2. Bellato E, Marini E, Castoldi F, et al. Fibromyalgia Last, in this study, participants are depicted as having syndrome: Etiology, pathogenesis, diagnosis, and switched and gradually developed cognizance of the abil- treatment. Pain Res Treat 2012;2012:426130. ity to choose providers along the course of their illness 3. Williams DA, Schilling S. Advances in the assessment journey. The question might arise of whether all patients of fibromyalgia. Rheum Dis Clin N Am 2009;35 have the opportunity to choose. Many barriers to equal (2):339–57. opportunities for choice exist. For example, patients may 4. Branco JC, Bannwarth B, Failde I, et al. Prevalence of be limited to selecting an in-network provider or be lim- fibromyalgia: A survey in five European countries. ited in terms of the money, time, or likely both that they Semin Arthritis Rheum 2010;39(6):448–53. are able to spend on health care. Because our sample was 5. Jones GT, Atzeni F, Beasley M, et al. The prevalence highly educated, they may have perceived more options of fibromyalgia in the general population: A compari- than the general population, and more research is needed son of the American College of Rheumatology 1990, to determine whether patients with fewer options might 2010, and modified 2010 classification criteria. build relationships with health care providers. Arthritis Rheumatol 2015;67(2):568–75. 6. Mas AJ, Carmona L, Valverde M, Ribas B, et al. Prevalence and impact of fibromyalgia on function Conclusions and quality of life in individuals from the general pop- In this article, we considered two important elements of ulation: Results from a nationwide study in Spain. patient–provider interactions in the context of fibromyal- Clin Exp Rheumatol 2008;26(4):519–26. gia: the role of information in patient–provider commu- 7. Wolfe F, Br€ ahler E, Hinz A, H€ auser W. Fibromyalgia nication and the development of patient–provider prevalence, somatic symptom reporting, and the di- relationships. Patients in this study had interactions in mensionality of polysymptomatic distress: Results which they were able to successfully build long-term rela- from a survey of the general population. Arthritis tionships with their health care providers. We explored Care Res 2013;65(5):777–85. some of the key factors affecting these relationships, in- 8. Isomeri R, Mikkelsson M, Partinen M, Kauppi MJ. cluding information gaps, the provider as an educator Severity of symptoms persists for decades in Relationship Building in Patient–Provider Communication 147 fibromyalgia—a 26-year follow-up study. Clin 23. Allegretti A, Borkan J, Reis S, Griffiths F. Paired inter- Rheumatol 2018;37(5):1383–8. views of shared experiences around chronic low back 9. Walitt B, Fitzcharles M-A, Hassett AL, et al. The lon- pain: Classic mismatch between patients and their gitudinal outcome of fibromyalgia: A study of 1555 doctors. Fam Pract 2010;27(6):676–83. patients. J Rheumatol 2011 Oct;38(1010):2238–46. 24. Perrot S, Choy E, Petersel D, Ginovker A, Kramer E. 10. Golden A, D’Arcy Y, Masters E, Clair A. Living with Survey of physician experiences and perceptions fibromyalgia: Results from the functioning with fibro about the diagnosis and treatment of fibromyalgia. survey highlight patients’ experiences and relation- BMC Health Serv Res 2012;12:356. ships with health care providers. Nurs Res Rev 2015; 25. Kumbhare D, Ahmed S, Sander T, Grosman-Rimon 2015:109–17. L, Srbely J. A survey of physicians’ knowledge and ad- 11. Madden S, Sim J. Creating meaning in fibromyalgia herence to the diagnostic criteria for fibromyalgia. syndrome. Soc Sci Med 1982 2006;63(11):2962–73. Pain Med 2018;9(6):1254–64. 12. Kool MB, van Middendorp H, Boeije HR, Geenen 26. Daraz L, MacDermid JC, Wilkins S, Gibson J, Shaw R. Understanding the lack of understanding: L. Information preferences of people living with fibro- Invalidation from the perspective of the patient myalgia – a survey of their information needs and with fibromyalgia. Arthritis Rheum 2009;61 preferences. Rheumatol Rep 2011;3(1):7. (12):1650–6. 27. Chen AT. Information seeking over the course of ill- 13. Kool MB, van Middendorp H, Lumley MA, et al. ness: The experience of people with fibromyalgia. Lack of understanding in fibromyalgia and rheuma- Musculoskeletal Care 2012;10(4):212–20. € € toid arthritis: The Illness Invalidation Inventory (3*I). 28. Asbring P, Narvanen A-L. Patient power and control: Ann Rheum Dis 2010;69(11):1990–5. A study of women with uncertain illness trajectories. 14. Sim J, Madden S. Illness experience in fibromyalgia Qual Health Res 2004;14(2):226–40. syndrome: A metasynthesis of qualitative studies. Soc 29. Bennett RM, Friend R, Jones KD, et al. The Revised Sci Med 2008;67(1):57–67. Fibromyalgia Impact Questionnaire (FIQR): 15. Armentor JL. Living with a contested, stigmatized ill- Validation and psychometric properties. Arthritis Res ness experiences of managing relationships among Ther 2009;11(4):R120. women with fibromyalgia. Qual Health Res 2017;27 30. Chen AT. The Relationship Between Health (4):462–73. Management and Information Behavior Over Time: 16. Barker KK. Electronic support groups, patient- A Study of the Illness Journeys of People Living With consumers, and medicalization: The Case of Fibromyalgia. J Med Internet Res 2016;18(10):e269. Contested Illness. J Health Soc Behav 2008;49 31. Charmaz K. “Discovering” chronic illness: Using (1):20–36. grounded theory. Soc Sci Med 1990;30(11):1161–72. 17. Haugli L, Strand E, Finset A. How do patients with 32. Holton JA. The coding process and its challenges. Int rheumatic disease experience their relationship with J Grounded Theory Rev 2010;9(1):21–40. their doctors? A qualitative study of experiences of 33. Glaser BG. The constant comparative method of stress and support in the doctor–patient relationship. qualitative analysis. Soc Probl 1965;12(4):436–45. Patient Educ Couns 2004;52(2):169–74. 34. Corbin JM, Strauss A. Grounded theory research: 18. Upshur CC, Bacigalupe G, Luckmann R, et al. “They Procedures, canons, and evaluative criteria. Qual don’t want anything to do with you.” Patient views of Sociol 1990;13(1):3–21. primary care management of chronic pain. Pain Med 35. Corbin J, Strauss A. Basics of Qualitative Research. 2010;11(12):1791–8. Techniques and Procedures for Developing Grounded 19. Werner A, Malterud K. It is hard work behaving as a Theory. 3rd ed. Thousand Oaks, CA: SAGE credible patient: Encounters between women with Publications, Inc.; 2008. chronic pain and their doctors. Soc Sci Med 1982; 36. Storey, L. Doing interpretative phenomenological 2003:1409–19. analysis. In E. Lyons & A. Coyle (Eds.), Analysing 20. Wallace L, Wexler R, McDougle L, et al. Voices that Qualitative Data in Psychology (pp. 51–64). London: may not otherwise be heard: A qualitative explora- SAGE Publications, Ltd; 2007. tion into the perspectives of primary care patients liv- 37. Charmaz K. Grounded theory as an emergent ing with chronic pain. J Pain Res 2014;7:291–9. method. In S. N. Hesse-Biber & P. Leavy (Eds.), 21. Bergman AA, Matthias MS, Coffing JM, Krebs EE. Handbook of Emergent Methods (pp. 155–172). Contrasting tensions between patients and PCPs in New York: The Guilford Press; 2008. chronic pain management: A qualitative study. Pain 38. Birks M, Chapman Y, Francis K. Memoing in qualita- Med 2013;14(11):1689–97. tive research: Probing data and processes. J Res Nurs 22. Frantsve LME, Kerns RD. Patient–provider interac- 2008;13(1):68–75. tions in the management of chronic pain: Current 39. Brocki JM, Wearden AJ. A critical evaluation of the use findings within the context of shared medical decision of interpretative phenomenological analysis (IPA) in making. Pain Med 2007 Jan 1;8(1):25–35.; health psychology. Psychol Health 2006;21(1):87–108. 148 Chen and Swaminathan 40. Smith JA, Osborn M. Interpretative phenomenologi- Descriptive results and patient characteristics as pre- cal analysis. In J. A. Smith (Ed.), Qualitative dictors. Patient Prefer Adherence 2014;8:135–45. Psychology: A Practical Guide to Research Methods 50. Berrios-rivera JP, Street RL, Garcia Popa-lisseanu (pp. 53–80). Thousand Oaks, CA: Sage Publications MG, et al. Trust in physicians and elements of the Inc. 2008. medical interaction in patients with rheumatoid ar- 41. Charmaz K. Constructing Grounded Theory. 2nd ed. thritis and systemic lupus erythematosus. Arthritis Thousand Oaks, CA: Sage; 2014. Care Res 2006;55(3):385–93. 42. Starks H, Brown Trinidad S. Choose your method: A 51. Arbuthnott A, Sharpe D. The effect of physician–pa- comparison of phenomenology, discourse analysis, tient collaboration on patient adherence in non- and grounded theory. Qual Health Res 2007;17 psychiatric medicine. Patient Educ Couns 2009;77 (10):1372–80. (1):60–7. 43. Bennett RM, Jones J, Turk DC, Russell IJ, Matallana 52. Jackson J, MacKean G, Cooke T, Lahtinen M. L. An internet survey of 2,596 people with fibromyal- Patient and provider experiences with relationship, gia. BMC Musculoskelet Disord 2007;8(1):27. information, and management continuity. Patient 44. Zanini C, Maino P, Mo ¨ ller JC, et al. Enhancing clini- Exp J 2017;4(3):38–47. cal decisions about care through a pre-consultation 53. Fan VS, Burman M, McDonell MB, Fihn SD. sheet that captures patients’ views on their health con- Continuity of care and other determinants of patient ditions and treatments: A qualitative study in the field satisfaction with primary care. J Gen Intern Med of chronic pain. Patient Educ Couns 2016;99 2005;20(3):226–33. (5):747–53. 54. Moseley GL, Butler DS. Fifteen years of explaining 45. Nouri SS, Rudd RE. Health literacy in the “oral pain: The past, present, and future. J Pain 2015;16 exchange”: An important element of patient–provider (9):807–13. communication. Patient Educ Couns 2015;98 55. Hyland ME, Hinton C, Hill C, et al. Explaining unex- (5):565–71. plained pain to fibromyalgia patients: Finding a nar- 46. Matthias MS, Parpart AL, Nyland KA, et al. The pa- rative that is acceptable to patients and provides a tient–provider relationship in chronic pain care: rationale for evidence based interventions. Br J Pain Providers’ perspectives. Pain Med 2010;11 2016;10(3):156–61. (11):1688–97. 56. Stone J, Wojcik W, Durrance D, et al. What should 47. Osei-Frimpong K, Wilson A, Lemke F. Patient co- we say to patients with symptoms unexplained by dis- creation activities in healthcare service delivery at the ease? The “number needed to offend.” BMJ 2002; micro level: The influence of online access to health- 325(7378):1449–50. care information. Technol Forecast Soc Change 57. Wolfe F, Clauw DJ, Fitzcharles M-A, et al. 2018;126:14–27. Fibromyalgia criteria and severity scales for clinical 48. Esch T, Mejilla R, Anselmo M, et al. Engaging and epidemiological studies: A modification of the patients through open notes: An evaluation using ACR preliminary diagnostic criteria for fibromyalgia. mixed methods. BMJ Open 2016;6(1):e010034. J Rheumatol 2011;38(6):1113–22. 49. Ullrich A, Hauer J, Farin E. Communication preferen- ces in patients with fibromyalgia syndrome: I’d like to ask you to draw something to represent what happened. Appendix You can use different colors to represent different aspects of your Box A1. Interview Guide experience. Consent form and pre-interview questionnaires (Take out or point to colored pencils and highlighters.) Now let’s proceed with some questions about your health history. If you need more paper, we can attach an extra sheet. Please talk aloud as you are drawing the timelines. You can just 1. Can you tell me when your health issues first began? talk to me about what you are drawing, why you are drawing it, 2. (probe further) Can you tell me more about that? 3. How did you feel at the time? anything that occurs to you. The purpose of me asking you to talk 4. What sources did you go to for help? (This can refer to medical aloud is to help me understand what matters to you, and also to un- help, social support, or information.) derstand your memories as you do. 5. How were those initial experiences? Prompt the participant if he or she falls silent. Some possible probes include: Timeline activity (30 minutes) Could you tell me about what happened then? (Give sketchpad.) Could you tell me about what you’re drawing now? I’d like to ask you to think back to when you started experiencing Could you tell me about that change? health issues, or further if you think it’s relevant. Think about the Suggest that the participant add the following to the timeline: path, the journey you took, to get to today. Emotions Relationship Building in Patient–Provider Communication 149 Turning points 14. Has your management strategy changed over time? 15. Do you see this changing in the future, and if so, how? Gradual changes (e.g., periods of frustration, periods when you 16. How do you feel about your health now? felt that things were going well) 17. What do you think that health and wellness mean? Important events (“What would you say is an important event?”) Has this changed for you over time? Ask the participant: 18. Do you feel that those around you are supportive of you? 19. Where do you personally go for support? 1. What do you think are the five most important events that have 20. Is there anything else you want to tell me about your illness occurred on your illness journey? journey? 2. Thinking back to your illness journey, at what points do you think information came into play? Can you note these points This is all I have for today. Thank you so much. Before our next on the timeline? interview, I will collect the content that you have authored online, 3. (probe) In what ways did information come into play? 4. Throughout your illness journey, what information was most and then we can review it together. Thanks again, and I’m looking important to you? forward to our next meeting! 5. Did you look for information? (If yes, why?) 6. Did you receive information from practitioners or people around you? Table A2. Participants’ Ages and Health Histories 7. How did you feel at these times? (Frustrated? Hopeful?) 8. Do you remember anything that you learned, or any informa- Age, y Onset Year Duration FIQR Score tion you received, that changed the way you viewed your ill- P05 27 2008 6 45 ness, your health, or your life? P06 49 1998 16 48 9. Do you remember anything that you learned, or any informa- P07 79 1956 58 41 tion you received, that changed the way you do things or man- P08 52 2000 14 33 age your illness? P09 26 2006 8 51 10. From what sources did you receive information? Have these P10 32 1996 18 24 changed throughout the time that you have had your condi- P11 31 1999 15 51 tion(s)? P12 65 1985 29 14 P13 21 2012 2 54 (After the participant is done, ask them some questions to try P14 54 2008 6 53 to clarify points that may be unclear, if any, on the timeline.) P15 59 2009 5 61 P16 66 1969 45 39 Follow-up questions (30 minutes) P17 62 1993 21 50 11. Do you feel that you have generally received the information P18 60 1989 25 37 you need to know how to deal with your condition? P19 37 1999 15 40 12. Today, do you feel that you still need information about your P20 44 2004 10 80 condition, and if you do, how do you go about finding what P21 56 2004 10 27 you need? (Make sure that they touch upon the sources that P22 60 2008 6 63 they use, how they conceptualize the search, and their search P23 61 1985 29 64 strategy.) P24 27 2012 2 58 a. What sources did you use? P25 51 1983 31 50 P26 57 1980 34 52 b. How do you go about looking for information? P27 31 2013 1 51 13. Now, can you tell me about how you manage your condition today? FIQR ¼ Revised Fibromyalgia Impact Questionnaire. What do you see as your priorities? http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Pain Medicine: The Official Journal of the American Academy of Pain Medicine Pubmed Central

Factors in the Building of Effective Patient–Provider Relationships in the Context of Fibromyalgia

Chen, Annie T; Swaminathan, Aarti
Pain Medicine: The Official Journal of the American Academy of Pain Medicine , Volume 21 (1) – Apr 13, 2019
Download PDF
12 pages

Loading next page...
 
/lp/pubmed-central/factors-in-the-building-of-effective-patient-provider-relationships-in-6L7xS08CAs

References (58)

Publisher
Pubmed Central
Copyright
© 2019 American Academy of Pain Medicine.
ISSN
1526-2375
eISSN
1526-4637
DOI
10.1093/pm/pnz054
Publisher site
See Article on Publisher Site

Abstract

Objective. Fibromyalgia patients face particular challenges in building relationships with health care providers. In this study, we examine, from patients’ perspectives, factors that influence the formation of effective patient–provider relation- ships. Design. This research employed a qualitative approach to analyze data collected from a study that employed semi- structured interviews. Methods. Multiple methods were used to recruit 23 fibromyalgia patients for interviews. Semistructured interviews were conducted to explore how participants’ information behaviors, including their communi- cation with and relationships to providers, changed over time. The interview data were analyzed using a qualitative ana- lytic method based on interpretative phenomenological analysis and constructivist grounded theory. Results. We identi- fied three important factors that influenced the building of effective relationships: patients and providers’ interactions involving information, identifying health care providers that fit patients’ needs, and realizing shared responsibilities. With regard to information, we described three important themes: information gaps, providers as educators/facilitators, and collaborative information behavior. Conclusions. Understanding of the key elements of relationship development be- tween patients and providers can be utilized in various ways to improve clinical care. First, the knowledge gained in this study can inform the design of patient education materials that assist patients to identify providers that fit their needs, prepare for consultations, and develop realistic expectations for providers. The findings of this study can also inform the design of resources and tools to enable clinicians to communicate and relate better with their patients. Key Words: Patient–Provider Relationship; Patient–Provider Communication; Information Interactions; Collaborative Information Seeking; Collaborative Problem Solving; Fibromyalgia physicians. At the outset, fibromyalgia patients often ex- Introduction perience a lack of understanding from medical practi- Fibromyalgia syndrome is a chronic, noninflammatory tioners and others around them [11–15]. They have condition that is characterized by musculoskeletal pain, reported feeling dismissed and disbelieved [15–17]. impaired cognitive function, disturbed sleep, fatigue, and Research analyzing online discussion content by fibromy- depressed mood without a well-defined underlying organic algia patients has also reported that patients expressed disease [1–3]. Estimates of the prevalence of fibromyalgia frustration at doctors and counseled each other to switch differ worldwide, but generally vary between 2% and 5% to more understanding doctors [16]. [4–7], and the experience of fibromyalgia is persistent, Many of the difficulties that fibromyalgia patients ex- with patients reporting similar symptoms a decade or more perience have also been reported by patients with chronic later [8,9]. Chronic pain has been identified as the key pain. Chronic pain patients are often labeled as hypo- symptom that influences many aspects of patients’ lives, in- chondriacs, avoided, hurried by physicians, and given in- cluding their personal and professional relationships, phys- adequate time to discuss their problems [18]. Other ical activity, work, and social commitments [10]. patients have reported feeling forced to be overassertive Patients who suffer from fibromyalgia often and look sickly in order to be taken seriously [19] and experience difficulties in their interactions with their feeling like their physicians did not understand their V 2019 American Academy of Pain Medicine. This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License(http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contactjournals.permissions@oup.com 138 Relationship Building in Patient–Provider Communication 139 feelings toward taking medication and just assumed they related discussion forums, and Twitter. A recruitment were seeking out more prescriptions [20]. goal was established to recruit a sample that was diverse Tensions in relationships may also arise from contrast- in terms of three characteristics: age (<47 years and ing needs and desires in patients’ and primary care practi- 47 years), illness duration (4 years and >4 years), and tioners’ perceived roles [21], including patients with social media participation style (nonuser/lurker, infre- chronic pain and health care providers having opposing quent participator, active participator), with substantive attitudes and goals, with patients seeking “to be under- representation in each of the subcategories per category. stood as individuals” and have their pain concerns legiti- Though the focus of this study was on patient–provider mized, while their health care providers may place a interactions rather than health, the Revised Fibromyalgia greater emphasis on diagnosis and treatment [22]. There Impact Questionnaire was used as a brief assessment of may also be differences in terms of patients’ and providers’ participants’ illness severity [29]. orientation toward illness (biomechanical vs biopsychoso- cial), and treatment goals and expectations [23]. Interviews There are other factors that may exacerbate issues Data for this analysis were collected as part of a study on that patients experience as they seek out help from health the relationship of information behavior, knowledge, and care providers. For example, receiving a diagnosis can be communication over time in fibromyalgia patients. The one of the biggest obstacles to receiving treatment. results of this study are reported in Chen [30]. Because Survey research has reported that a significant portion of the study examined change in information behaviors and physicians, including both primary care providers and knowledge representations over time, participants were specialists, do not have adequate knowledge of the fibro- also asked to draw a timeline representing their illness myalgia diagnostic criteria [24,25], and that up to 54% journey. Each participant was interviewed about their of physicians experience difficulty diagnosing it [24]. health history, information seeking and use, and social Fibromyalgia patients also experience the need for in- media participation. The first author conducted all of the formation. Patients are uncertain about the definition of interviews. The first interview focused on participants’ the syndrome and the symptoms that are part of fibromy- health history and information seeking and use, which in- algia [11]. Fibromyalgia patients seek information on a cluded their communication with their health care pro- diverse set of topics, including symptom management, viders. Participants were asked about the information treatments, medications, the cause of fibromyalgia, needs that they had, the information they encountered, health outcomes, methods to cope, and impact on daily and the information that they would have liked to have, life [26–28]. Although the majority prefer acquiring in- as well as their interactions with health care practi- formation face-to-face from providers, a significant pro- tioners. The interview followed a semistructured format portion of participants seek information from different in which the interviewer encouraged participants to elab- sources because of a lack of information, indistinct infor- orate on the information sources and encounters they mation, or lack of attention from health care providers. had, which led to extensive discussion of patients’ inter- In this article, we take a qualitative approach to exam- actions with their providers and facilitated the present ining patient–provider interactions using data that were analysis. The interview guide is provided in Box A1. collected during an interview study focused on fibromy- The second interview was used to explore partici- algia patients’ illness journeys. Similar to the findings pants’ social media participation histories. As this paper reported in this literature review, study participants focuses on thematic analysis of the interview content re- shared stories of negative interactions with physicians, lating to patient–provider communication, the second in- particularly early in their illness journeys. However, in terview will not be discussed in further depth. The mean contrast to this literature, study participants were eventu- total interview time per participant was two hours and ally successful in building long-term relationships with 26 minutes. their physicians. We explore, from the patient’s perspec- tive, key factors that influenced the formation of these relationships: information interactions, finding pro- Data Analysis viders, and realizing shared responsibilities. Interview transcripts served as the basis for this analysis. The content was analyzed using Atlas.ti, version 1.0.1, by the first author. The qualitative analytic procedure Methods was informed by two approaches: interpretative Sample and Recruitment phenomenological analysis and constructivist grounded Multiple recruitment mechanisms were used to recruit a theory. The first step of our analytic procedure involved convenience sample that self-identified as having fibro- line-by-line coding. In grounded theory methodology, myalgia (N¼ 23). The recruitment mechanisms included line-by-line coding ensures that the researcher stays close an email contact list from a previous survey [27], a uni- to the data, verifies and saturates categories, and mini- versity listserv, face-to-face support groups, health- mizes the potential for missing categories [31,32]. The 140 Chen and Swaminathan Table 1. Sample characteristics constant comparative method, which involves constant comparisons of instances that have been assigned the Characteristic Category No. % same category and categories with one another, was used Age, y to ensure systematicity in the analytic process [31,33], 21–30 4 17.4 and care was taken to ensure that the categories were 31–40 4 17.4 well developed and that there was conceptual density 41–50 2 8.7 [34]. The codes were conceptualized as a nested hierar- 51–60 7 30.4 61–70 5 21.7 chy, as is customary in grounded theory [35]. In this as- 71–80 1 4.3 pect, our analytic method also inherits from Gender interpretative phenomenological analysis, in which the Female 22 95.7 codes are arranged in themes and subthemes [36]. This Male 1 4.3 hierarchical structure facilitated both organization of the Race/Ethnicity White 20 87.0 codes and consideration of whether there were gaps in Black 2 8.7 the conceptualization of categories. Lastly, it can be used Asian 1 4.3 as a tool to facilitate scrutiny of codes, clarify research Education thinking, and map research activities, among other uses Some college 2 8.7 [37,38]. In this study, memos were used to consider how 2- or 4-y college degree 1 4.3 in progress codes relating to patient–provider interactions were re- 2- or 4-y college degree 8 34.8 lated, organize them, and consider what gaps might still Graduate degree 11 47.8 exist in the codes and categories. Graduate degree 1 4.3 The primary aim of interpretative phenomenological in progress analysis is to explore how participants make sense of Employment status* Student 11 47.8 their world and focuses on participants’ interpretations Employed full-time 11 47.8 of an object or event [39,40]. Grounded theory focuses Not employed 3 13.0 on how social and psychological processes occur in a Retired 9 39.1 given environment or situation [41,42]. Our analytic pro- Received disability cedure was based on these two approaches because lived Yes 8 34.8 No 15 65.2 experience, as well as social interactions and context, Illness duration, y were important foci for the study. 4 3 13.0 To protect the identities of the participants, each partici- >4 20 87.0 pant was assigned an identification number. There were Social media participation four pilot participants; thus, the 23 participants in the study Nonuser/lurker 9 39.1 Infrequent participator 5 21.7 will be referred to as P05-P27. The study protocol was ap- Frequent participator 9 39.1 proved by the Institutional Review Board. All participants gave written informed consent for their data to be used in *Participants may belong to more than one category. publications at the time of the interview. The term “lurker” refers to a person who reads social media content but does not author content. practitioners, rheumatologists, and neurologists. Results Alternative medical practitioners included chiropractors, Sample acupuncturists, massage therapists, physical therapists, The majority of the sample was comprised of white and naturopaths. Participants usually established long- women, which is consistent with prior studies relating to term relationships with multiple health care practi- fibromyalgia involving larger samples [9,43]. The partici- tioners, and many assembled a team of health care practi- pants resided in nine different states, Washington, DC, tioners that they relied on. For some, this included a team and Australia. The use of multiple recruitment methods of primarily allopathic practitioners, and for others, a led to a sample that varied in terms of age (range ¼ 21– combination of practitioners of various traditions and 79 years) and illness duration (range ¼ 1–58 years), perspectives, including allopathic, alternative, and though those with short illness durations were underrep- integrative. resented. The sample also varied widely in terms of ill- ness severity. Sample characteristics are depicted in Information Interactions Table 1, and a brief synopsis of each participant’s age and health history appears in Table A2. In patient–provider communication, information plays Health care practitioners played a prominent role in an important role. Patients both experienced gaps in in- the interviews of all participants. There was great diver- formation, as well as created gaps, in their interactions sity in the types of practitioners that were seen. In terms with providers. These gaps were not conducive to build- of allopathic traditions, patients generally saw general ing successful relationships. When successful Relationship Building in Patient–Provider Communication 141 Table 2. Characteristics of patient–provider interactions and practice implications Theme Observed Phenomena Practice Implications Information interactions • • Information gaps Lack of respect from providers Patients can make an effort to present infor- Lack of clear answers mation to providers • • Lack of progress in treatment Providers should create a space where Lack of information led to patients seeking patients feel that they are being respected their own information to bring to providers and their information needs are being Patients withhold their diagnosis from pro- addressed viders to obtain more information • • Providers and educators and facilitators Providers refer patients to additional infor- Providing practitioners with consumer- mation sources friendly information sources could be helpful Affirming the value that providers offer in sharing and educating could instill a sense of purpose • • Collaborative information seeking and prob- Use of multiple information sources Physician should be open to information lem solving Process is dialogic (may involve multiple in- that patients bring into the consultation formation interactions between the clinician Efforts should be made to facilitate continu- and the patient and occur over multiple ity of information exchange over time, in- clinic visits) cluding the provision of digital tools Multiple providers deal with different aspects of condition Developing the patient–provider relationship • • Identifying health care providers Finding and building relationships with Patients can receive assistance on identifica- trusted providers took a long time tion and selection of providers • • Patients identified criteria for selecting Providers could be made aware of patients’ providers expectations Patients developed realistic expectations • • Sharing responsibilities Patients learned how to utilize consultation Both patient and provider should be respect- time effectively ful of each other’s knowledge Patients could be provided with information about how to prepare for their appointment relationships were established, participants were enor- [pain management providers] couldn’t understand that, I mously appreciative of the role that providers played as guess, because they have so many people who come to educators and facilitators. Patients and providers also them just wanting the meds. I’m like I don’t just want worked together in collaborative information seeking you to mask it. I want to know what the problem is.” and problem solving. We discuss each in turn. There were situations in which participants felt that there was information that they could have been told that would have made their journey easier. For example, Information Gaps two participants mentioned that they were prescribed In this study, participants spoke of two main types of antidepressants for pain, and they did not really under- communication gaps: patients experiencing frustration stand why. In another case, a participant discovered that with the lack of information from practitioners and her physician had withheld his suspicion that she had fi- patients’ withholding of information. When asked about bromyalgia. She had gone to a chiropractor, who sug- information that they received from practitioners, many gested that she might have fibromyalgia: said that earlier in their journey, they did not receive I said to the general physician, “This chiropractor thinks much information. P05 said, “It was a very frustrating I have fibromyalgia.” And he said, “I do too. I just did time, because nobody could give me clear answers. They not want to make that diagnosis because I was afraid it were like, oh, we think it’s fibro, and once they tell you would impact your health insurance in the future.” So it’s fibromyalgia, then that’s it.. .. They were like, okay, that was really shocking to me, and I kind of understood that’s it. Don’t have much to do for you.” Some partici- later what he was talking about, but I still didn’t think pants reported being told that their symptoms were all in that was right at all not to tell me what he thought my their heads (e.g., P06 and P12). Many participants be- problem was. (P06) came frustrated at being prescribed pain medications and not receiving explanations for what they were experienc- Conversely, P10, who had been diagnosed with both ing. For example, P24 said, “I was like, I don’t want to fibromyalgia and psoriatic arthritis at different times, mess with those hard pain meds. I just don’t. And they 142 Chen and Swaminathan related her experience of being diagnosed with psoriatic orthopedist and did not go see him again. Thus, fibromy- arthritis: “When I was diagnosed.. .he called me at home, algia might be used as an explanation of some symptom personally. He also talked to my parents, but he actually that patients were experiencing, but this explanation was talked to me on the phone, and I went into his office and not only empty, it also left patients feeling that they had we talked. Face-to-face, which I think is an appropriate not been treated with respect. thing to do, you know.” There were cases in which the lack of information spurred participants into action. P22 became fed up with Health Care Providers as Facilitators and the lack of progress in terms of her health situation: Educators Though there were examples of information gaps and in- I want to move on. I either want to be better or at least formation withholding, participants also related exam- understand what the problem is and what can be done ples of the knowledge that health care providers shared about it, not this holding pattern where everything seems or other types of growth that they facilitated. For exam- to be just piling up, and we’re getting nowhere.. .. ple, P16 talked about how her provider shared research There’s a lot of confusion, a lot of information coming articles with her, which enabled her to learn more and and going, and nothing is happening. It’s just sort of de- engage in further information seeking. P19 said that her struction. (P22) provider connected her with a hypnotherapy intervention She decided to go see an orthopedic specialist that she that was extremely beneficial in terms of her health man- had seen for a long time for advice, who in turn referred agement. P26 remarked that her physician provided her to a rheumatologist who diagnosed her with fibromy- invaluble assistance in terms in her process of learning algia. She called this a “green light” because it confirmed how to manage her health: what she already thought she had. P13 said that the lack Ninety percent of what [the integrative physician] has of progress in his medical consultations led him and his told me I knew already, but the 10% that I didn’t know mother to actively seek information: “We were both just that he’s been able to help me learn is priceless. It’s kind digging around because the doctors were being completely of like losing that last five pounds when you’re on a diet. unhelpful. So we were trying to find out what’s actually The first 20 are easy, but boy that last five are just hard, going on so we can be prepared with options to suggest to hard, hard.. .. It’s the hardest part, but it’s priceless. It’s the doctor when we actually go there.” priceless and I could never have figured it out on my The previous examples describe situations in which own. (P26) participants described becoming more proactive and en- gaged in seeking answers due to information gaps. There These sentiments were echoed by P14: “She’s just were also situations in which information gaps were stra- been a really wonderful source, and she educates me. I tegically created by patients in order to get at answers to think doctors need to share.” their questions. For example, some participants withheld This educational process can involve lessons that may that they had been diagnosed with fibromyalgia in se- initially seem counterintuitive due to how illness and the lected clinical interactions. Often, this was because par- treatment of illness are portrayed in society. For example, ticipants perceived that fibromyalgia had a tendency to P12 recalled a conversation that she had with a become the physician’s explanation for a phenomenon nutritionist: that the patient experienced, and the patient wanted a clearer medical explanation. For example, when P12 con- Nutritionist: Stop fighting. You’re putting all your energy sulted a physician about some health problems she was into fighting. You don’t feel good, and you have some experiencing, the explanation turned out to be hypogly- part of you that feels like you have to fight, but you’re cemia. She did not tell her physician that she had fibro- wasting your energy fighting. myalgia, but her physician ended up asking her if she had P12: But I’ve had to fight this. That’s what you’ve been fibromyalgia. When I asked P12 why she did not tell the told.. .. ‘Don’t give in. Fight it!’ physician initially, she replied, “It’s not that you’re Nutritionist: No! You need to take.. .. You need to take embarrassed by it, but you’re like, what do they think? all your energy and put it towards something, towards Do they treat you differently? And in that case, I was re- growth! ally trying to figure out what was wrong. I didn’t want somebody to say, ‘Oh, it’s fibromyalgia; don’t worry This led to a fundamental change in her understanding about it.’” of how to manage her health: “I think that was a really P12’s testimony hints at something that P16 states big turnaround, to think about: ‘This isn’t about battling much more directly: “[The orthopedist’s] quote was: something. Which, that’s always the word we use medi- ‘People with fibromyalgia just get tendinitis for no rea- cally, always. You’re ‘battling’ cancer. You’re ‘battling’ son’.... That attitude of people with fibromyalgia, as heart disease. It was more like, ‘How do you make it part though we were some weird class of people, just get of you, but you’re still growing and thriving? It’s just a tendinitis.” P16 said that she did not believe that piece of you.’” Relationship Building in Patient–Provider Communication 143 Many participants spoke of information that they had ultimate responsibility for that decision resting with the become aware of through mainstream media channels, patient. including news articles, books, television, and others, Besides this type of iterative process of information that was produced by health care providers, physicians, seeking, participants also mentioned looking up informa- and researchers. In some cases, it led to participants sub- tion online with physicians in consultation, and one par- sequently seeing those providers (P07 and P23), and P15 ticipant also said that she looked at her electronic health exchanged e-mails with the researcher, saying that she record with her physician. Another participant, P27, said had changed her life. Though this type of information ex- of her physician that what she liked about her was that change is different than one-on-one patient–provider “she has a curious personality.. .. The first appointment, relationships, one might still think of it as an important she’s like, ‘It sounds like what you’re dealing with is re- type of connection, which results in both acquisition of ally hard,’ like, ‘Let’s try and figure out together what it concrete health knowledge and affirmation. is.’” Collaborative Information Seeking and Problem Identifying Health Care Providers Solving As stated earlier, participants in this study, as in past lit- Participants also reported examples of collaborative in- erature, experienced difficulties in finding health care formation seeking and sharing. One point at which this providers that they could work with. Many participants’ often occurred was concerning a person’s diagnosis. initial medical encounters were similar to those reported Quite a few participants brought up the possibility of fi- in previous literature, in which physicians exhibited skep- bromyalgia to their doctor or another health care practi- ticism regarding patients’ symptoms. For example, one tioner. Interestingly, there were also several that said that day P06 found her wrist extremely swollen and made an they thought they had fibromyalgia, but they did not tell appointment with a rheumatologist. By the time of the their physicians because they knew that they were not appointment, the swelling had gone down, and the rheu- supposed to self-diagnose. matologist told her it was “all in [her] head” (P06). P13 One example of a collaborative process toward diag- said, “They [doctors] either thought I was being a hypo- nosis was P13’s experience. P13 first found out about fi- chondriac or something or didn’t believe me at all,” and bromyalgia from his mother, who referred him to a P23 said that doctors thought that she was seeking drugs. website describing the condition. He thought it seemed Thus, participants realized the importance of “vetting plausible, and mentioned it to the physician, who looked doctors”: into it in more depth. He and the physician engaged in a dialogue in which the physician told him that he fit the Cross that one off! That’s the wrong one! (P12) criteria for both chronic fatigue syndrome and fibromyal- If I can’t find somebody that will work with me in a col- gia, but the physician ultimately diagnosed him with fi- laborative manner, then it’s all over. I’ve just got to point bromyalgia because it encapsulated more of his where I won’t put up with it. (P22) symptoms. They also identified characteristics that were impor- Participants also engaged in collaborative information tant to them in their search for health care providers. seeking and/or problem solving with their health care Participants looked for open-mindedness, providing in- providers. P17 learned of an experimental medication for formation, and leaving it up to participants to make their alopecia, and she mentioned it to her dermatologist. The own decision: dermatologist said that the medication had not been ap- proved for women and that she was not comfortable pre- When I’m vetting a doctor, I’m looking for someone scribing it. P17 ended up trying something else after that who’s open-minded, looking for somebody who’s not go- visit, and the next time she went back to see this physi- ing to just pooh-pooh acupuncture, or alternative practi- cian, the physician had done her own research and was ces, but also someone who’s not just going to like, “Here. then willing to prescribe it. But by then, P17 had thought You need these 50 tests”.. .. I really appreciate people it over and decided it was too risky for her. who give me information, give me options, and then let This example illuminates several points. First, it is me decide for myself. Because like, I want to understand; clear that both parties are engaged in the information I don’t want to be told. I also want to choose for myself. seeking process and that their actions are dialogic: infor- (P19) mation seeking and communication on the part of one results in reflection and subsequent information seeking The theme of physicians pushing pain medication was on the part of the other, and vice versa. The physician is common and undesirable: “I’m very fanatic in some open to receiving and processing information offered by ways, about vetting doctors, because I don’t want to be the patient, and the patient also reflects upon the physi- with someone who’s just going to throw pills at me” cian’s opinion. The parties explore the information to- (P19). Participants appreciated that providers allowed gether and ultimately arrive at a decision, with the them to make their own decisions: “She relates to me. 144 Chen and Swaminathan Your doctor’s just going to be looking at your illness. So She doesn’t just try to push medicine on me. She’ll sug- you need to look at yourself until you can find a physician gest something and I’ll say yea or nay, and she’s good who practices integrative medicine or functional medi- with whatever I decide. I never feel like she’s rushing. I cine.. .. You can probably count those on both your never feel like she has not got time for me” (P14). hands in XYZ County, and they’re not always covered by P05 says, she has “had doctors that are very dismissi- insurance. So you need to take things into your own ve.. .who don’t like it when you ask questions. I had one hands. (P15) doctor who was just like, ‘Take this medication,’ and didn’t want to talk about it. ‘At least it’s going to make Thus, one can see that, overall, participants came to you feel better; it’ll take away the pain. So stop asking view their health management as a team effort, involving me all these questions.’” These encounters led her to real- multiple practitioners, but also an individual one. ize that she needed to work with doctors who listened to A change in participants’ expectations of their health her and were receptive to her questions. care practitioners also led to smoother patterns of Thus, in summary, participants developed various cri- interaction: teria for their providers, including taking the time and ef- fort to listen to patients, being open-minded, sharing I also figured out that doctors are not going to fix me. information and options, and not “being pushy.” Initially it was just like, “Oh!” [Claps hands.] “Magic pill, magic pill, magic pill.” But now I realized it’s more like, they ease, they make it more comfortable for me to just do day-to-day, and so I don’t have ridiculous expect- Shared Responsibilities ations of what they can do for me, but also.. .and they’re As time passed, patients also developed a clearer under- human. I think also because I’ve learned that, that it’s a standing of what they expected of the patient–provider lot easier for me to interact with doctors and just ask relationship. Participants were looking for “partnership them questions, and if they’re the kind of people who are medicine,” not “here it is, go do it” (P12). Though not open to that, then I need to switch. (P05) patients had expectations of doctors, they also realized that they needed to do their part: In a seven-minute appointment, they’re going to listen to Discussion you for the first two minutes, and then they’ve already In this study, we explored the question of how fibromyal- drawn their conclusion. That means as a patient, I need gia patients build successful relationships with physicians to go in clear and concise, not wandering.. .‘cause I’ve over time. We identified key factors that influenced the only got his attention for two minutes.. .. I take paper in formation of these relationships: information interac- with me always. Sometimes I’ve written things down I tions, finding providers, and realizing shared responsibili- want to ask ahead of time, and then I take notes. (P12) ties. A successful patient–provider relationship includes Participants took steps to set an agenda for initial con- multiple elements, in which patients and providers each sultations. The participants spoke of “interviewing” doc- contribute. On the one hand, patients learn to articulate tors and counselors, of spending the first appointment their needs better over time and develop the ability to rec- just chatting with doctors rather than having a physical, ognize health care providers that they can work with; to see if the relationship would work. P05 and P06 men- they also recognize that they need to do their part. tioned that they appreciated physicians who took time to Practitioners, in turn, are open and listen to patients, give go through their medical history with them on the first serious consideration to the information that patients visit. bring to the consultation, and engage them in collabora- P12 believes that partnership medicine involves a rela- tive problem solving and dialogic information interac- tionship in which both parties have responsibility: tions. Gaps in knowledge, created by both patients and “Doctors know some things, and you know some things. practitioners, impede productive clinical relationships. And you’ve got to have somebody who lets you put that The findings of this study have various implications together, ‘cause you’re the expert on your body, and they for knowledge translation. As this study has shown, it might be the expert on some treatments, but then you’re can take time for patients and providers to build success- the one that has to sort of be your own case coordinator ful relationships, and there are ways that the process can and monitor your body” (P12). This was not a role that be facilitated. First, patients gradually came to under- participants naturally took on, and it took time to learn: stand what they needed from providers and also learned “It took me a long time to be the manager of my own what they could do to facilitate effective consultations. health system. I expected doctors to kind of manage my This process could perhaps be facilitated through the de- life for me. It took me a long time to realize that, no, I’m velopment of patient education materials that assist in charge of this. The doctors that work for me are a patients to identify characteristics that they consider im- team, and I manage that team” (P14). It is not always portant in selecting a provider, to help them communi- easy to put that team together. P15, for example, said: cate with providers, and to set realistic expectations. Our Relationship Building in Patient–Provider Communication 145 study also illustrated the dialogic nature of information preferences, which has reported that many patients prefer interactions and the diversity of information sources that an open style of communication [49] and prior research may be involved, including the role that individuals on trust in rheumatic conditions [50], in which physi- around patients play in information interactions. We can cians’ sensitivity, informativeness, and patient-centered provide tools for patients to organize the information behavior have been shown to predict trust. Additionally, that they gather from different information sources and this study showed that successful long-term relationships communicate questions to providers. Usage of tools such that patients shared with providers often involved mutual as the notes mentioned by P12 can help to clarify stories understanding and forbearance. Participants in this study and questions that patients may have and identify topics did not always get what they wanted. In particular, they for providers to address in the interaction [44]. recognized that providers were “human” and that there Providers, in turn, could receive more training in com- were structural constraints due to the insurance plans municating with patients. For example, they might re- they belonged to and guidelines providers needed to ad- ceive additional training in shared decision-making and here to because of the health care systems they operated in reducing high oral literacy demand in their communi- in. Mutual understanding is important because better cations, which has been shown to be detrimental to pa- physician–patient collaboration has been reported to be tient learning [45]. Previous research on providers’ associated with better patient adherence [51], relation- perspectives of the patient–provider relationships in ship continuity is foundational for experiencing informa- chronic pain has also reported that providers experience tional and management continuity [52], and continuity strain and uncomfortable relationships with patients of care has been shown to be associated with patient sat- [46]. Helping providers to recognize their contributions isfaction [53]. can perhaps alleviate part of this burden. Additionally, However, what this study highlights is the need for they might receive materials that acquaint them with in- both patient and provider to realize that the other is not formation that fibromyalgia patients may desire, includ- a static entity. As this study has shown, participants learn ing evidence-based information about complementary a great deal over time, and this evolution can involve a and integrative health (CIH) modalities. Table 2 presents clearer self-articulation of what they need from pro- an overview of the themes identified in patient–provider viders. They are not looking for providers to be interactions and implications for practice. “perfect,” but “partners.” Additionally, they may also This study also has implications in terms of implica- shift from expecting physicians to “solve their problems” tions for information provision. As has been observed in to an expectation of a shared responsibility. past literature, the increasing availability of health infor- Understanding on the part of both parties can facilitate mation on the Internet has empowered patients to seek more sustained, interactive exchanges in which the pa- information and play a more active role in their care. tient and provider work together to solve problems over Though it has been argued that pre-encounter online in- time. formation searching can have a negative effect on consul- Extant literature has argued that educational interven- tations, the literature has also shown that it can have a tions for pain can lead to improvements in pain manage- positive effect, empower patients to be more involved in ment [54]. An explanation that resonates with a patient the decision-making process, and increase patients’ com- can both empower them and enable them to move for- mitment to compliance [47]. In this study as well, we saw ward [55]. Conversely, explanations and diagnostic that patients both desired and played an active part in labels can not only lack meaning [11], but also offend problem solving by doing research before consultations patients [56]. Thus, one question that might arise about and bringing what they had learned into the consultation. this sample would be how providers’ explanations of Participants also engaged in dialogic information behav- pain affected participants’ behavior. Though we did not iors with practitioners, following up on leads provided systematically investigate this question, we considered by their health care providers. Though it may seem that this question in light of the experiences presented in this these discussions might take more time, the statements article. First, we have related examples in which partici- made by participants such as P12 show that cognizance pants were frustrated when providers offered up fibromy- and consideration for the limited time that providers algia as the cause for what they were experiencing, were have and agenda setting could facilitate a concise and ef- unwilling to explore or discuss alternative explanations, fective consultation. We are increasingly seeing innova- and focused on prescribing pain medications. This not tions such as secure messaging and OpenNotes [48] that only left participants feeling that they still wanted facilitate shared information sources between patient and answers, but also led to increased information seeking, provider. The development of features that reduce the withholding information from providers, and provider burden of the provider to provide information sources switching. Conversely, there were also situations in and/or increase patient comprehension could be which patients reported reacting positively to transpar- invaluable. ency from providers and the knowledge they shared, The results of this study are consistent with prior re- which occasionally also led to episodes of collaborative in- search on fibromyalgia patients’ communication formation seeking. Lastly, changes in patients’ perspectives 146 Chen and Swaminathan on health and well-being occasionally also led to better and facilitator, collaborative information seeking and communication with providers. These experiences high- problem solving, identifying health care providers, and light that the building of patient–provider relationships is engaging in partnership medicine. Bridging information a gradual and dialogic process in which open communica- gaps, collaborative information seeking and problem tion, information sharing and collaboration, and adopting solving, and partnership medicine can be invaluable in a long-term view can be of tremendous benefit. forging successful clinical relationships. This study has various limitations. First, this study in- Patients and providers both need to contribute in or- volved a limited sample of participants who mostly re- der for clinical relationships to be successful. Training sided in the United States, and thus the experiences and education can be helpful. For patients, providing in- related by participants are likely to reflect elements of formation about selecting and working with providers clinical care in the United States. For example, most but and how to make the most of clinical consultations can not all participants who developed symptoms more re- improve productivity. For providers, learning more about cently had shorter diagnosis times and experienced more patients’ expectations can help them to provide better understanding from their physicians. We suspect that care. these changes may reflect the change in diagnostic crite- ria for fibromyalgia in 2011 [57]. In addition, the partici- pants in this study were primarily female and white. The Acknowledgments interactions that fibromyalgia patients of other back- grounds may have with their providers may be different; The authors would like to thank the participants for this is an important area for future research. sharing their experiences in this interview study, and Dr. This study also involves the retrospective recall of pa- Barbara M. Wildemuth at the University of North tient experience. Participants in this study shared their Carolina, Chapel Hill, for her feedback on successive experiences of building relationships with providers per- revisions of the manuscript. haps years or decades after they began dealing with their conditions. The clarity of participants’ memories and their References salience might change over time, and the accuracy of their memories could also be an issue. In addition, this study is 1. Wolfe F, Clauw DJ, Fitzcharles M-A, et al. The focused on patients’ perspectives, and providers may have American College of Rheumatology preliminary diag- had different perspectives of their interactions with these nostic criteria for fibromyalgia and measurement of patients. Although interviewing the providers also would symptom severity. Arthritis Care Res 2010;62 have been valuable, this was outside the scope of the cur- (5):600–10. rent study. 2. Bellato E, Marini E, Castoldi F, et al. Fibromyalgia Last, in this study, participants are depicted as having syndrome: Etiology, pathogenesis, diagnosis, and switched and gradually developed cognizance of the abil- treatment. Pain Res Treat 2012;2012:426130. ity to choose providers along the course of their illness 3. Williams DA, Schilling S. Advances in the assessment journey. The question might arise of whether all patients of fibromyalgia. Rheum Dis Clin N Am 2009;35 have the opportunity to choose. Many barriers to equal (2):339–57. opportunities for choice exist. For example, patients may 4. Branco JC, Bannwarth B, Failde I, et al. Prevalence of be limited to selecting an in-network provider or be lim- fibromyalgia: A survey in five European countries. ited in terms of the money, time, or likely both that they Semin Arthritis Rheum 2010;39(6):448–53. are able to spend on health care. Because our sample was 5. Jones GT, Atzeni F, Beasley M, et al. The prevalence highly educated, they may have perceived more options of fibromyalgia in the general population: A compari- than the general population, and more research is needed son of the American College of Rheumatology 1990, to determine whether patients with fewer options might 2010, and modified 2010 classification criteria. build relationships with health care providers. Arthritis Rheumatol 2015;67(2):568–75. 6. Mas AJ, Carmona L, Valverde M, Ribas B, et al. Prevalence and impact of fibromyalgia on function Conclusions and quality of life in individuals from the general pop- In this article, we considered two important elements of ulation: Results from a nationwide study in Spain. patient–provider interactions in the context of fibromyal- Clin Exp Rheumatol 2008;26(4):519–26. gia: the role of information in patient–provider commu- 7. Wolfe F, Br€ ahler E, Hinz A, H€ auser W. Fibromyalgia nication and the development of patient–provider prevalence, somatic symptom reporting, and the di- relationships. Patients in this study had interactions in mensionality of polysymptomatic distress: Results which they were able to successfully build long-term rela- from a survey of the general population. Arthritis tionships with their health care providers. We explored Care Res 2013;65(5):777–85. some of the key factors affecting these relationships, in- 8. Isomeri R, Mikkelsson M, Partinen M, Kauppi MJ. cluding information gaps, the provider as an educator Severity of symptoms persists for decades in Relationship Building in Patient–Provider Communication 147 fibromyalgia—a 26-year follow-up study. Clin 23. Allegretti A, Borkan J, Reis S, Griffiths F. Paired inter- Rheumatol 2018;37(5):1383–8. views of shared experiences around chronic low back 9. Walitt B, Fitzcharles M-A, Hassett AL, et al. The lon- pain: Classic mismatch between patients and their gitudinal outcome of fibromyalgia: A study of 1555 doctors. Fam Pract 2010;27(6):676–83. patients. J Rheumatol 2011 Oct;38(1010):2238–46. 24. Perrot S, Choy E, Petersel D, Ginovker A, Kramer E. 10. Golden A, D’Arcy Y, Masters E, Clair A. Living with Survey of physician experiences and perceptions fibromyalgia: Results from the functioning with fibro about the diagnosis and treatment of fibromyalgia. survey highlight patients’ experiences and relation- BMC Health Serv Res 2012;12:356. ships with health care providers. Nurs Res Rev 2015; 25. Kumbhare D, Ahmed S, Sander T, Grosman-Rimon 2015:109–17. L, Srbely J. A survey of physicians’ knowledge and ad- 11. Madden S, Sim J. Creating meaning in fibromyalgia herence to the diagnostic criteria for fibromyalgia. syndrome. Soc Sci Med 1982 2006;63(11):2962–73. Pain Med 2018;9(6):1254–64. 12. Kool MB, van Middendorp H, Boeije HR, Geenen 26. Daraz L, MacDermid JC, Wilkins S, Gibson J, Shaw R. Understanding the lack of understanding: L. Information preferences of people living with fibro- Invalidation from the perspective of the patient myalgia – a survey of their information needs and with fibromyalgia. Arthritis Rheum 2009;61 preferences. Rheumatol Rep 2011;3(1):7. (12):1650–6. 27. Chen AT. Information seeking over the course of ill- 13. Kool MB, van Middendorp H, Lumley MA, et al. ness: The experience of people with fibromyalgia. Lack of understanding in fibromyalgia and rheuma- Musculoskeletal Care 2012;10(4):212–20. € € toid arthritis: The Illness Invalidation Inventory (3*I). 28. Asbring P, Narvanen A-L. Patient power and control: Ann Rheum Dis 2010;69(11):1990–5. A study of women with uncertain illness trajectories. 14. Sim J, Madden S. Illness experience in fibromyalgia Qual Health Res 2004;14(2):226–40. syndrome: A metasynthesis of qualitative studies. Soc 29. Bennett RM, Friend R, Jones KD, et al. The Revised Sci Med 2008;67(1):57–67. Fibromyalgia Impact Questionnaire (FIQR): 15. Armentor JL. Living with a contested, stigmatized ill- Validation and psychometric properties. Arthritis Res ness experiences of managing relationships among Ther 2009;11(4):R120. women with fibromyalgia. Qual Health Res 2017;27 30. Chen AT. The Relationship Between Health (4):462–73. Management and Information Behavior Over Time: 16. Barker KK. Electronic support groups, patient- A Study of the Illness Journeys of People Living With consumers, and medicalization: The Case of Fibromyalgia. J Med Internet Res 2016;18(10):e269. Contested Illness. J Health Soc Behav 2008;49 31. Charmaz K. “Discovering” chronic illness: Using (1):20–36. grounded theory. Soc Sci Med 1990;30(11):1161–72. 17. Haugli L, Strand E, Finset A. How do patients with 32. Holton JA. The coding process and its challenges. Int rheumatic disease experience their relationship with J Grounded Theory Rev 2010;9(1):21–40. their doctors? A qualitative study of experiences of 33. Glaser BG. The constant comparative method of stress and support in the doctor–patient relationship. qualitative analysis. Soc Probl 1965;12(4):436–45. Patient Educ Couns 2004;52(2):169–74. 34. Corbin JM, Strauss A. Grounded theory research: 18. Upshur CC, Bacigalupe G, Luckmann R, et al. “They Procedures, canons, and evaluative criteria. Qual don’t want anything to do with you.” Patient views of Sociol 1990;13(1):3–21. primary care management of chronic pain. Pain Med 35. Corbin J, Strauss A. Basics of Qualitative Research. 2010;11(12):1791–8. Techniques and Procedures for Developing Grounded 19. Werner A, Malterud K. It is hard work behaving as a Theory. 3rd ed. Thousand Oaks, CA: SAGE credible patient: Encounters between women with Publications, Inc.; 2008. chronic pain and their doctors. Soc Sci Med 1982; 36. Storey, L. Doing interpretative phenomenological 2003:1409–19. analysis. In E. Lyons & A. Coyle (Eds.), Analysing 20. Wallace L, Wexler R, McDougle L, et al. Voices that Qualitative Data in Psychology (pp. 51–64). London: may not otherwise be heard: A qualitative explora- SAGE Publications, Ltd; 2007. tion into the perspectives of primary care patients liv- 37. Charmaz K. Grounded theory as an emergent ing with chronic pain. J Pain Res 2014;7:291–9. method. In S. N. Hesse-Biber & P. Leavy (Eds.), 21. Bergman AA, Matthias MS, Coffing JM, Krebs EE. Handbook of Emergent Methods (pp. 155–172). Contrasting tensions between patients and PCPs in New York: The Guilford Press; 2008. chronic pain management: A qualitative study. Pain 38. Birks M, Chapman Y, Francis K. Memoing in qualita- Med 2013;14(11):1689–97. tive research: Probing data and processes. J Res Nurs 22. Frantsve LME, Kerns RD. Patient–provider interac- 2008;13(1):68–75. tions in the management of chronic pain: Current 39. Brocki JM, Wearden AJ. A critical evaluation of the use findings within the context of shared medical decision of interpretative phenomenological analysis (IPA) in making. Pain Med 2007 Jan 1;8(1):25–35.; health psychology. Psychol Health 2006;21(1):87–108. 148 Chen and Swaminathan 40. Smith JA, Osborn M. Interpretative phenomenologi- Descriptive results and patient characteristics as pre- cal analysis. In J. A. Smith (Ed.), Qualitative dictors. Patient Prefer Adherence 2014;8:135–45. Psychology: A Practical Guide to Research Methods 50. Berrios-rivera JP, Street RL, Garcia Popa-lisseanu (pp. 53–80). Thousand Oaks, CA: Sage Publications MG, et al. Trust in physicians and elements of the Inc. 2008. medical interaction in patients with rheumatoid ar- 41. Charmaz K. Constructing Grounded Theory. 2nd ed. thritis and systemic lupus erythematosus. Arthritis Thousand Oaks, CA: Sage; 2014. Care Res 2006;55(3):385–93. 42. Starks H, Brown Trinidad S. Choose your method: A 51. Arbuthnott A, Sharpe D. The effect of physician–pa- comparison of phenomenology, discourse analysis, tient collaboration on patient adherence in non- and grounded theory. Qual Health Res 2007;17 psychiatric medicine. Patient Educ Couns 2009;77 (10):1372–80. (1):60–7. 43. Bennett RM, Jones J, Turk DC, Russell IJ, Matallana 52. Jackson J, MacKean G, Cooke T, Lahtinen M. L. An internet survey of 2,596 people with fibromyal- Patient and provider experiences with relationship, gia. BMC Musculoskelet Disord 2007;8(1):27. information, and management continuity. Patient 44. Zanini C, Maino P, Mo ¨ ller JC, et al. Enhancing clini- Exp J 2017;4(3):38–47. cal decisions about care through a pre-consultation 53. Fan VS, Burman M, McDonell MB, Fihn SD. sheet that captures patients’ views on their health con- Continuity of care and other determinants of patient ditions and treatments: A qualitative study in the field satisfaction with primary care. J Gen Intern Med of chronic pain. Patient Educ Couns 2016;99 2005;20(3):226–33. (5):747–53. 54. Moseley GL, Butler DS. Fifteen years of explaining 45. Nouri SS, Rudd RE. Health literacy in the “oral pain: The past, present, and future. J Pain 2015;16 exchange”: An important element of patient–provider (9):807–13. communication. Patient Educ Couns 2015;98 55. Hyland ME, Hinton C, Hill C, et al. Explaining unex- (5):565–71. plained pain to fibromyalgia patients: Finding a nar- 46. Matthias MS, Parpart AL, Nyland KA, et al. The pa- rative that is acceptable to patients and provides a tient–provider relationship in chronic pain care: rationale for evidence based interventions. Br J Pain Providers’ perspectives. Pain Med 2010;11 2016;10(3):156–61. (11):1688–97. 56. Stone J, Wojcik W, Durrance D, et al. What should 47. Osei-Frimpong K, Wilson A, Lemke F. Patient co- we say to patients with symptoms unexplained by dis- creation activities in healthcare service delivery at the ease? The “number needed to offend.” BMJ 2002; micro level: The influence of online access to health- 325(7378):1449–50. care information. Technol Forecast Soc Change 57. Wolfe F, Clauw DJ, Fitzcharles M-A, et al. 2018;126:14–27. Fibromyalgia criteria and severity scales for clinical 48. Esch T, Mejilla R, Anselmo M, et al. Engaging and epidemiological studies: A modification of the patients through open notes: An evaluation using ACR preliminary diagnostic criteria for fibromyalgia. mixed methods. BMJ Open 2016;6(1):e010034. J Rheumatol 2011;38(6):1113–22. 49. Ullrich A, Hauer J, Farin E. Communication preferen- ces in patients with fibromyalgia syndrome: I’d like to ask you to draw something to represent what happened. Appendix You can use different colors to represent different aspects of your Box A1. Interview Guide experience. Consent form and pre-interview questionnaires (Take out or point to colored pencils and highlighters.) Now let’s proceed with some questions about your health history. If you need more paper, we can attach an extra sheet. Please talk aloud as you are drawing the timelines. You can just 1. Can you tell me when your health issues first began? talk to me about what you are drawing, why you are drawing it, 2. (probe further) Can you tell me more about that? 3. How did you feel at the time? anything that occurs to you. The purpose of me asking you to talk 4. What sources did you go to for help? (This can refer to medical aloud is to help me understand what matters to you, and also to un- help, social support, or information.) derstand your memories as you do. 5. How were those initial experiences? Prompt the participant if he or she falls silent. Some possible probes include: Timeline activity (30 minutes) Could you tell me about what happened then? (Give sketchpad.) Could you tell me about what you’re drawing now? I’d like to ask you to think back to when you started experiencing Could you tell me about that change? health issues, or further if you think it’s relevant. Think about the Suggest that the participant add the following to the timeline: path, the journey you took, to get to today. Emotions Relationship Building in Patient–Provider Communication 149 Turning points 14. Has your management strategy changed over time? 15. Do you see this changing in the future, and if so, how? Gradual changes (e.g., periods of frustration, periods when you 16. How do you feel about your health now? felt that things were going well) 17. What do you think that health and wellness mean? Important events (“What would you say is an important event?”) Has this changed for you over time? Ask the participant: 18. Do you feel that those around you are supportive of you? 19. Where do you personally go for support? 1. What do you think are the five most important events that have 20. Is there anything else you want to tell me about your illness occurred on your illness journey? journey? 2. Thinking back to your illness journey, at what points do you think information came into play? Can you note these points This is all I have for today. Thank you so much. Before our next on the timeline? interview, I will collect the content that you have authored online, 3. (probe) In what ways did information come into play? 4. Throughout your illness journey, what information was most and then we can review it together. Thanks again, and I’m looking important to you? forward to our next meeting! 5. Did you look for information? (If yes, why?) 6. Did you receive information from practitioners or people around you? Table A2. Participants’ Ages and Health Histories 7. How did you feel at these times? (Frustrated? Hopeful?) 8. Do you remember anything that you learned, or any informa- Age, y Onset Year Duration FIQR Score tion you received, that changed the way you viewed your ill- P05 27 2008 6 45 ness, your health, or your life? P06 49 1998 16 48 9. Do you remember anything that you learned, or any informa- P07 79 1956 58 41 tion you received, that changed the way you do things or man- P08 52 2000 14 33 age your illness? P09 26 2006 8 51 10. From what sources did you receive information? Have these P10 32 1996 18 24 changed throughout the time that you have had your condi- P11 31 1999 15 51 tion(s)? P12 65 1985 29 14 P13 21 2012 2 54 (After the participant is done, ask them some questions to try P14 54 2008 6 53 to clarify points that may be unclear, if any, on the timeline.) P15 59 2009 5 61 P16 66 1969 45 39 Follow-up questions (30 minutes) P17 62 1993 21 50 11. Do you feel that you have generally received the information P18 60 1989 25 37 you need to know how to deal with your condition? P19 37 1999 15 40 12. Today, do you feel that you still need information about your P20 44 2004 10 80 condition, and if you do, how do you go about finding what P21 56 2004 10 27 you need? (Make sure that they touch upon the sources that P22 60 2008 6 63 they use, how they conceptualize the search, and their search P23 61 1985 29 64 strategy.) P24 27 2012 2 58 a. What sources did you use? P25 51 1983 31 50 P26 57 1980 34 52 b. How do you go about looking for information? P27 31 2013 1 51 13. Now, can you tell me about how you manage your condition today? FIQR ¼ Revised Fibromyalgia Impact Questionnaire. What do you see as your priorities?

Journal

Pain Medicine: The Official Journal of the American Academy of Pain Medicine – Pubmed Central

Published: Apr 13, 2019

There are no references for this article.