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Outsiders in the Experts’ World: A Grounded Theory Study of Consumers and the Social World of Health Care:

Outsiders in the Experts’ World: A Grounded Theory Study of Consumers and the Social World of... This article presents findings from a grounded theory study, which investigated interactions between health professionals and consumers. The authors used Corbin and Strauss’s evolved version of grounded theory, which is underpinned by symbolic interactionism. The study sample included 23 consumers and nine health professionals. Data collection methods included demographic questionnaires, interviews, consumer diaries, digital storytelling, observations, and field notes. Data analysis was conducted using essential grounded theory methods. The resultant grounded theory consists of five categories: (a) Unexpected entrance, (b) Learning a new role, (c) Establishing a presence, (d) Confronting the dichotomy of “us and them,” and (e) Tailored care. Findings suggest that despite consumers and health professionals’ roles, consumers are outsiders in the social world of health care. Progress toward empowered consumers who are in control of their health and health care is slow and care that is truly consumer-centered is still the exception not the rule. Keywords grounded theory, consumer-centered care, health care, health professionals, symbolic interactionism individual patient preferences, needs and values” (Committee Introduction on Quality of Health Care in America, 2001, p. 6). Around the Until the 1970s, a biomedical model of health predominated same time, other definitions of patient-centered care took into in Western health care systems. This model prioritized the account individuals’ “desire for information, sharing decision impact of illness on the human body, over consumers’ expe- making and [experts] responding appropriately” (Stewart, rience of care. The introduction of Engel’s (1977) biopsy- 2001, p. 445). The Australian Commission on Safety and chosocial model of health care in 1977 shifted the culture of Quality in Health Care (ACSQHC, 2012) later extended the health care to include consumers’ psychological and social definition to include health professionals forming partner- contexts being considered in conjunction with their illness ships with consumers, their families and carers. during treatment. As this cultural shift continued to evolve, Despite models of health care shifting away from an ill- the relationship between consumers and health professionals ness focus, to the inclusion of consumers’ biopsychosocial developed greater equality, and consumers’ rights to self- contexts and more recently, to consumers being central to determination and autonomy were recognized (Deber et al., decisions about their health care, the representation of con- 2005; Will, 2011). sumers as patients in the literature often categorizes people This cultural evolution has led to the concept and termi- according to their illness or contextualizes them within spe- nology of patient-centered care (also referred to as consumer- cific health settings (see Ferri et al., 2015; Lammers & centered care or person-centered care) becoming mainstream. Happell, 2003; Mathur et al., 2013; Tobin et al., 2002). Although the concept of patient-centered care was introduced Interactions between consumers and health professionals are in the mid-1950s (Balint, 1969; de Haes, 2006; Groene, 2011), it did not gain traction until the release of a landmark James Cook University, Cairns, QLD, Australia report in the United States, titled Crossing the Quality Chasm University of New England, Armidale, NSW, Australia (Committee on Quality of Health Care in America, 2001). 3 Massey University, Palmerston North, New Zealand The report names patient-centered care as one of six key Corresponding Author: improvements required in the U.S. health care system. In Jane Mills, Pro Vice Chancellor, College of Health, Massey University, addition, the report provides the first definition of patient- Palmerston North 4410, New Zealand. centered care as “care that is respectful of and responsive to Email: j.mills1@massey.ac.nz Creative Commons CC BY: This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). 2 SAGE Open central to delivering health care that is patient- or consumer- Definitions centered. Yet research often focuses on interactions with spe- In the context of the study and this publication, the authors cific health professionals only (Jangland et al., 2011; use the terms consumer to define a person who accesses Stenhouse, 2011) or addresses interactions from method- health service for their own care or on behalf of someone for ological or conceptual perspectives (see Cahill et al., 2008; whom they care. The use of the term consumer avoids the Drew et al., 2001; Sofaer & Firminger, 2005). passive overtones of the term “patient” and acknowledges Consumer-centered care requires affected people to share that consumers are actual or potential users of health care power and responsibility for their health and health care with services (ACSQHC, 2011b). The use of the term experts in health professionals (Gluyas, 2015; Mead & Bower, 2000). this publication refers to all health professionals. It was an in Supporting people to become more involved in their own vivo term used by consumer study participants to acknowl- health and health care requires insight into their perceptions of edge the expertise of health professionals. interactions with health professionals. The aim of this study was to identify and explain processes of interaction between consumers and health professionals that are not bound by spe- Sample cific health professions, health settings, or health conditions A total of 32 participants from one Australian regional city (Chamberlain-Salaun, 2015). Gaining consumers’ insights and were recruited to and participated in the study. The sample identifying and explaining processes of interactions between included 23 consumers (14 females and nine males) and nine consumers and health professionals has the potential to inform health professionals (eight females and one male). Methods the development of strategies to improve consumers’ health included purposive, theoretical, and snowball sampling care experiences and their health outcomes. (Birks & Mills, 2015). Generation and analysis of data from an initial purposive sample of consumers guided theoretical Study Design sampling of additional participants in an iterative process. Theoretically, sampling health experts resulted in snowball Method sampling of additional consumer participants. Similarly, the Grounded theory is both a research design and a product. The purposive sampling of consumers directed the sampling of researchers used Corbin and Strauss’s evolved version of additional health expert study participants. Consumers were grounded theory, which is underpinned by symbolic interac- eligible to participate in the study if they were 18 years of tionism, as the methodological lens through which to con- age and above and interacted with a range of health profes- duct the study. A more detailed account of links between sionals. Experts from any health discipline were eligible for grounded theory methods and symbolic interactionism and inclusion in the study. the application of the former in light of the latter are pre- sented in an earlier publication (Chamberlain-Salaun et al., Data Generation and Collection 2013). Grounded theory provides a comprehensive and inte- grated approach for identifying dominant processes within Data were generated and/or collected (Birks & Mills, 2015) an area of inquiry, with the aim of developing a theory that via demographic questionnaires, interviews, consumer dia- explains what is actually going on rather than “what should, ries, digital storytelling, observations, and field notes. Data could, or ought to be” going on (Glaser, 1999, p. 840). generation refers to the process of generating data with par- Grounded theory research does not commence from the ticipants via methods such as interviews. Data collection premise of a priori theories. Rather, the researcher begins refers to collecting artifacts from participants or from other with an area of inquiry, which is broad enough to allow the sources such as participants’ diaries, questionnaires, or digi- flexible application of essential grounded theory methods to tal stories. Table 1 presents an overview of the types of data guide the collection, generation, and analysis of data to con- generated and/or collected, the number of participants struct a theory (Charmaz, 2014). The area of inquiry of the involved, and the quantity of data produced. study reported in this article is the process of interaction between consumers and health professionals. The resultant Data Analysis product of a grounded theory research study is a theory that is recognizable to people familiar with internal processes Data were analyzed using essential grounded theory methods relating to the area of inquiry (Hunter et al., 2011). The as ascribed by Birks and Mills (2015). The methods are ini- grounded theory Outsiders in the experts’ world incorporates tial coding, concurrent data generation or collection and five dominant processes: (a) Unexpected entrance, (b) analysis, constant comparative analysis, intermediate cod- Learning a new role, (c) Establishing a presence, (d) ing, theoretical sampling, selecting a core category, advanced Confronting the dichotomy of “us and them,” and (e) Tailored coding and theoretical integration, and writing memos and care (Chamberlain-Salaun, 2015). theoretical sensitivity. Chamberlain-Salaun et al. 3 Table 1. Data Generation/Collection Method and Quantity of Data by Participant Type. Total consumers Total health experts Total participants Data generation/collection method n = 23 n = 9 n = 32 Quantity of data Demographic questionnaire 17 7 24 24 questionnaires Interview 10 7 17 17 transcripts Consumer diaries 3 0 3 20 entries Digital storytelling 7 0 7 6 digital stories Observation 8 5 13 7 hr of observation Field notes 18 A4 pages Initial coding is the first step of the data analysis process. Theoretical integration of a grounded theory conceptually In this phase, data were scrutinized in units and labeled with brings together the elements of the grounded theory process codes. Concurrent generation or collection and analysis of into a theory that explains phenomena (Strauss & Corbin, data are “interrelated processes” (Corbin & Strauss, 1990, p. 1994). In this study, the use of the advanced coding tech- 419; italics in original) that underlay the operation of nique of storyline (Corbin & Strauss, 1990; italics in origi- grounded theory (Glaser & Strauss, 1967). Using this nal) enabled the integration of the grounded theory. method, each round of generated or collected data in the Theoretical sensitivity and writing memos are also key study was analyzed before the next round of data generation components of a grounded theory process. Theoretical sensi- or collection commenced. The constant comparative analysis tivity is a researcher’s ability to recognize nuances in the method uses inductive reasoning to extrapolate patterns data, to extract data elements relevant to the developing the- across individual data units to form conceptual categories ory and to reconstruct meaning from data generated with par- (Bryant & Charmaz, 2007), whereas abductive reasoning ticipants (Corbin & Strauss, 2008; Mills et al., 2006; Strauss “bring together things which one had never associated with & Corbin, 1990). Theoretical sensitivity is influenced by a one another [in] a cognitive logic of discovery” (Reichertz, researcher’s “personal and temperamental bent” (Glaser & 2010, para 16). Using constant comparative analysis, inter- Strauss, 1967, p. 46), their intellectual history, and their per- mediate codes were identified. During the intermediate cod- sonal and professional experiences (Strauss & Corbin, 1990). ing process, the researcher moves iteratively between initial Throughout the study, the writing of theoretical, analytical, and intermediate coding to connect codes and categories into and conceptual memos (Glaser, 2004; Thornberg & Charmaz, more conceptual-level categories. 2011) lubricates the cogs of the ground theory research pro- Theoretical sampling is a method unique to grounded cess from the planning phase through to the end of a study theory. The distinguishing characteristic of theoretical sam- (Birks & Mills, 2011). pling is that it is an iterative process whereby future data collection is guided by concepts derived from analysis of Ethics data from the previous round of data collection or generation (Corbin & Strauss, 2008; Glaser, 1978; Glaser & Strauss, Ethical considerations were adhered to in accordance with 1967). Theoretical sampling determines, where, how, and the Australian National Statement on Ethical Conduct in from whom to collect or gather further data to elaborate and Human Research 2007 (The National Health and Medical refine categories in a developing theory (Birks & Mills, Research Council et al., 2014). The research study received 2011; Charmaz, 2014). ethics approval from the Cairns and Hinterland Human A core category is the overarching category that links all Research Ethics Committee (HREC) and the James Cook the categories of a grounded theory; it reassembles the parts University HREC. All study participants were given a Study into a whole (Birks & Mills, 2011; Corbin & Strauss, 2008). Information Sheet and provided written consent prior to par- Corbin and Strauss (2008) use the metaphor of an umbrella ticipating in the study (Chamberlain-Salaun, 2015). to explain the concept of the core category. The categories, or concepts, of a grounded theory resemble the umbrella’s Findings spokes. Without the material covering the spokes, the spokes are just spokes and are of little use. The material links the The grounded theory Outsiders in the experts’ world presents spokes and gives the object form and use; it becomes an what happens when people enter the social world of health umbrella. Researchers can be assisted in identifying a core care and take on a consumer role and how processes of inter- category by asking themselves how they would conceptual- actions between consumers and experts are enacted. The ize their findings in a succinct way (Corbin & Strauss, 1990). contingent relationship between what and how (Charmaz, A core category is central to the integration of a grounded 2014) addresses the question, “why are consumers outsiders theory because it encapsulates and connects all the compo- in the experts” world? Regardless of the key roles of con- nents of a theory (Strauss & Corbin, 1990). sumers and experts in the social world of health care, 4 SAGE Open Figure 1. Grounded theory model of outsiders in the experts’ world. findings in this study suggest that consumers are outsiders in with a tube hanging out of [their] throat, looking at a ceiling and this nurse leaning over just saying, “Relax” [ . . . ] It is very scary a world dominated by experts who drive the machinations of to wake up like that, not moving, not knowing what’s going on. the social world of health care. (P5A26) The grounded theory consists of five categories and their subcategories (Figure 1): (a) Unexpected entrance (Emotional The following consumer had not seen the inside of a hos- fluctuations, Changing perceptions of self), (b) Learning a pital for 30 years before experiencing chest pain at home in new role (Acquiring knowledge, Learning the language of the middle of the night and being taken to hospital by health care, Confronting mortality, and Cultivating support), ambulance: (c) Establishing a presence (Gaining confidence, Choosing a voice, and Establishing relationships, (d) Confronting the I didn’t know what to expect and all the rest of it. You know dichotomy of “us and them,” (e) Tailored care (Listening and what I mean. If you go there because you cut yourself open and acting; and Accessing experts). Each category is discussed in you need stitches, then you know what’s going to happen. detail below and representative participant quotes are used to (P4A13) exemplify findings. Quotes are coded as participant (P) and artifact (A) number. Four hours later, this same participant was diagnosed with leukemia. His feelings of disbelief were emphasized in his retelling of the event. “I said to the doctor ‘it must be wrong, Unexpected Entrance you’ve made a mistake with somebody’s blood, it’s not mine. People make unexpected entrances into the social world of I’m a regular blood donor, I just gave blood six weeks ago. health care and become consumers as a result of illness or injury. Surely it would have been picked up then’” (P4A13). Illness can be either a diagnosed condition or a range of persis- Consumers with persistent but undiagnosed symptoms tent symptoms that affect a person’s health and well-being but similarly experience the emotional fluctuations experienced defy diagnosis. Becoming a health care consumer can also be by consumers who have received a diagnosis. They feel frus- experienced vicariously by those who are responsible for pro- trated, isolated, and impatient; frustrated because they do not viding care or support to someone else experiencing illness or have a label to attach to their symptoms and isolated because injury. Unexpected entrances are fraught with emotional fluc- they do not receive the same level of support and understand- tuations and changing perceptions of self that mark the begin- ing from others that a diagnosis often attracts. ning of “another chapter” (P5A26) in a person’s life. After the initial emotional fluctuations of an unexpected Unexpected entrances into the social world of health care entrance, peoples’ perceptions of “self” change. Perceptions cause emotional fluctuations that exceed everyday emotional of both the internal self and the physical self are intertwined experiences. Before entering the social world of health care, with how consumers perceive themself, how others perceive people cannot imagine what it is like to wake up in hospital them, and how they think others perceive them. After being Chamberlain-Salaun et al. 5 in hospital for extended periods of time, consumers are faced information, treatment and medication options, and for self- with the challenge of learning to reconnect with their previ- medicating via online medication purchases. Some consum- ous perceptions of self and to trust themselves again. One ers are more wary of this source of knowledge than others consumer related the experience of returning home after 9 and approach with caution, recognizing that “there’s no guar- weeks in hospital. His wife was at work all day, so he was antee of quality on the Internet” (P3A10). home alone: Consumers who care for someone with a health condition acquire knowledge about their role through the experience of All of a sudden I was at home alone. It made no sense, because representing and advocating for another. These consumers I was well or reasonably well, and I could look after myself. I explained how their experiences influence their interactions could make myself tea and coffee and have lunch and all the rest with experts. A mother explained that prior to giving birth of it. But it was just the fact that there was nobody here, when her approach with doctors was “to tell them what the prob- you’re used to having, you know, all the ward staff there at your lem was, listen to what they’d say and not really enter into a call. (P4A13) discussion” (P11A46). Since becoming a parent, the con- sumer acknowledged that she no longer “just takes the doc- The consumer’s recount of his internal dialogue provides tor’s word” (P11A46). She attributed her increased insight into his attempts to bring some perspective to the assertiveness to a combination of knowledge gained over situation. I told myself, “stop being a bloody idiot and get on time, having a long-term relationship with her general prac- with it. What are you concerned about? You’re well” titioner and “just growing older” (P11A46). (P4A13). To understand what is happening to them and around The changed physical self of another consumer, who is in them, consumers must learn the language of health care, a wheelchair as a result of an accident, led him to think about which includes new words and their meanings. Consumers his body in new ways. Without the sensory perception of his also assign their own meanings to previously known words, body from the stomach down, his diet and weight have and these meanings may change over time. For one study become priorities for maintaining health because “you can’t participant (P4A13), the word leukemia meant, “you’re tell when your belly’s full” (P5A26) and weight gain can dead” when he was diagnosed. His construction of meaning lead to health complications. was based on what he had seen on television. Following ini- Dichotomies between how consumers perceive them- tial discussions with his doctor, the meaning of the word leu- selves and how others see them are not uncommon. One par- kemia morphed into “the fight of your life” and then as he ticipant related how an expert referred to her condition as “a met and heard stories from other patients living with leuke- significant physical disformity [sic]” (P7A32). This was in mia, the word came to mean “remission” and the possibility stark contrast to the way in which the consumer perceived of a fulfilling life. her physical condition. She explained that she did not con- Humor, as a component of language, is often used in con- sider her condition to be “that bad” nor did she perceive her- sumer–expert interactions. Factors which influence when self as someone who “looked funny or walked funny” and how humor is used include the relationship between con- (P7A32). sumers and experts, how consumers are feeling on a particu- lar day, and the point at which consumers are on the spectrum of their condition. An expert’s comment highlights how the Learning a New Role use of humor changes as consumers adapt to their diagnosis, The role of a health consumer is largely undefined. Similar to “a positive outcome diagnosis [is] not a joking matter [but] other undefined roles in life—parent, spouse, sibling—the once [consumers] have got used to their diagnosis they’ll consumer role is learned and refined through experience. come in and have a joke with the staff” (P20A58). Similarly, Learning the role of consumer incorporates acquiring knowl- a consumer who has a chronic condition recounted a frequent edge, learning the language of health care, confronting mor- exchange that he has with one of his health experts: “Almost tality, and cultivating support. every time I see him, I walk in and he says, ‘So how are Consumers acquire knowledge through their sensemaking you?’ and I say, ‘I’m not dead yet’ and he says, ‘There’s a of information and through the experience of living with a bonus we weren’t expecting’” (P4A13). health condition. They access information from a range of When the role of being a consumer is associated with a sources including experts, the Internet, and from members of life-threatening or life-limiting illness, consumers are acutely their social networks. One consumer explained how she used confronted with their own mortality. Some consumers accept the printed information about migraines, which her pharma- that the inevitability of dying is part of living and they cist provided, as a basis for collecting further information via acknowledge that this makes “the burden [of illness] easier to the internet. The consumer then used her newfound knowl- carry” (P8A27). Consumers who accept their mortality are edge of migraines and treatment options as a starting point more likely to speak openly about death, not to mask their for discussions with her general practitioner. Consumers use fear of death but to “lighten” life. A general practitioner study the internet in varying degrees to search for general health participant recounted how one of her patient’s acceptance and 6 SAGE Open openness about illness and death guided frank discussions It is challenging for consumers to gain confidence in their between them (P22A60). The same participant added that interactions with experts when experts exclude them from speaking openly about death removes the proverbial elephant discussions or when consumers perceive that their inclusion in the room and alleviates the “need for euphemisms” in discussions is tokenistic. The following comment reflects (P22A60). a consumer’s perceptions of mental health experts as nonin- Cultivating support includes consumers accepting unre- clusive: “You see what you want to see, hear what you want quested support when it is offered and requesting support to hear and know what you want to know” (P17A56). Over when it is needed. Family, friends, and social networks are time, the lived experience of illness enables consumers to sources of practical, financial, and emotional support. gain confidence. A participant who had been a consumer for Consumer participants recounted instances of receiving about 4 years at the time of interview had spent numerous overwhelming support, as the following interview excerpt extended periods in hospital. His recount of a scenario dem- highlights: onstrates the ways in which confident consumers can change the course of interactions with experts: My friend from church has been mowing my lawn and trimming my edges and cutting my trees since [I got sick]. He has never he [the registrar] would ask me a question and I would begin to accepted any payment for it. He has just—he just took it on answer, and only halfway through, he would talk over the top of himself that that’s what he was going to do. [ . . . ] people would me. I let him go, and he did that [for] probably six or seven come over with home-cooked meals so that we didn’t have to do minutes. This was in the ward, yes. Like, there was him and— it, and yes, there was just so much support. When we got into because there’s usually a group of between three and five of financial problems, they whipped the hat around at church and them. Yes, there was him and two or three others, I forget how came up with literally thousands of dollars over the last four many. But he was doing all the talking. Eventually, I pulled it up years to help us out. (P4A13) and I said, “Listen, do you want to hear what I’ve got to say, or don’t you?” I said, “Are you actually interested?” Consumers living with mental illness, or who are par- ents or carers of people living with mental illness, are He said, “What do you mean?” often isolated in their journey prior to seeking profes- sional support. For these consumers, seeking support from I told him. I said, “You asked me a question, I start to talk, and health professionals is often a “cry for help,” which is not then you talk over the top of me. Now, do you really want to always heard or does not meet their expectations. A con- know, or don’t you?” I said, “Because if you’re just going to talk sumer who participated in the digital storytelling work- over the top of me and not bother listening to what I’ve got to say anyway, then I don’t want you treating me.” Actually, he shop titled her story Invisible (P17A53). The digital story was—he really changed his attitude after that. (P4A13) speaks directly to health professionals and tells the story of her family’s struggle of living with the “nightmare” of her son’s mental illness. The story opens with images of To be heard, consumers have to find their voice and use it. family photos, an eerily haunting soundtrack and the par- Consumers use a range of “voices” or approaches when ticipant’s voice; “Invisible. Do you see us? Do you hear interacting with experts, including a “squeaky wheel gets us? Do you know us?” (P17A53). Rather than meeting the more oil” approach, a warrior approach or a gentle, patient family’s cry for help, seeking professional support ampli- approach. Some consumers use “a squeaky wheel gets more fied the family’s struggle. They felt even more isolated as oil” (P11A46) approach as their mantra. One consumer they searched for health professionals “with heart and explained, “say what you need, what you think you need soul” (P17A53) and more often than not were unable to [because] no one’s going to come looking to help” (P11A46). access this level of care. The participant explained that before coming to this realiza- tion she would answer “I’m fine” (P11A46) anytime an expert asked her how she was feeling. Establishing a Presence Using the “squeaky wheel” approach does not always pro- As consumers learn their, role they establish their presence in duce desired results; external factors also influence outcomes. the social world of health care. To establish their presence, A consumer’s digital story tells of his experience of arriving consumers must first gain confidence and choose a “voice.” at a hospital emergency department (ED) with severe back Confident consumers assert their presence and provide feed- pain. The consumer used a “squeaky wheel” approach and back directly to experts. In choosing a voice, consumers repeatedly asked to have an ultrasound or an MRI (magnetic make decisions about how they will interact with experts. resonance imaging) so that the underlying cause of his pain The “voice” that a consumer chooses may be the result of could be ascertained and he could be given appropriate treat- their increased confidence, the influence of their individual ment. His requests were refused without explanation. personality, or it may reflect where they are on the spectrum Taking a “warrior” approach is familiar to consumers who of their illness or condition. are carers. As carers for others, they “fight” for those who Chamberlain-Salaun et al. 7 cannot advocate for themselves. In the digital story titled Confronting the Dichotomy of “us and them” Invisible (P17A53), a consumer included an image of two The social world of health care dichotomizes consumers (us) dinosaurs fighting and the spoken words, “Then we came to and experts (them). In health care settings, the dichotomy of you. Then we must become warriors” (P17A53). The image “us and them” is characterized spatially, physically and and the consumer’s words, symbolize the constant battle that through the asymmetrical relationship between consumers carers face when they interact with the health system and and experts. The asymmetrical relationship is supported by experts. social structural elements such as culture, systems, and deci- Consumers with life-threatening health conditions tend to sion-making powers engendered by consumers’ and experts’ choose a gentle, patient approach in their interactions with roles. Some consumers and experts confront the dichotomy experts. During interviews and observation, these consumers of “us and them” as they would in a battlefield in which a spoke with, and demonstrated, humility and patience in rela- victor must emerge. These actors do not transcend social tion to their interactions with experts. One consumer structural elements but wield them as weapons. Other con- explained, sumers and experts are willing to transcend structural dichot- omies of “us and them” to create and negotiate reciprocal Attitude is everything. I’ve seen people in there who really interactions that meet each other’s needs and expectations. treated the staff with disdain, you know, because they wanted Health care settings are spatially dichotomized into con- attention and they wanted it now. Whereas, I was always patient, sumer spaces and experts’ spaces, although sometimes the two knowing that there’s more people in there than just me and some overlap. Consumers are generally spatially confined to hospital of them are in a worse condition than me. (P4A13) wards and hospital and medical practice waiting areas. Spaces designated for experts include offices and hospital ward sta- Relationships between consumers and experts are often tions. Consulting rooms and operating theaters are designated established over long periods of time. Of all the relationships spaces into which experts invite consumers to enter. that consumers have with experts, their relationship with The physical positioning of experts during interactions their general practitioner is the most intimate. Consumers with consumers often represents a reality of the division spoke about the changes in their lives that their general prac- between the two groups. In hospital settings, experts often titioner had seen them through: relationship break-ups, stand above consumers who are laying or sitting in hospital depression, the lowest point in their illness, and being close beds. The asymmetrical positioning of consumers and to death. Regardless of the experiences that consumers share experts in these scenes perpetuates a dichotomy of “us and with their experts, professional boundaries are maintained. them.” Although in hospital and private practice consulting Sometimes experts will relax professional boundaries. rooms consumers and experts are physically positioned at For example, they may make exceptions in the last stages of eye-level, the expert’s desk and professional workspace are a a consumer’s life. In this situation, general practitioners physical cue of the dichotomy of “us and them.” might give their personal telephone number to a consumer, Consumers appreciate experts’ attempts to break down but not before considering “what [they] are willing to do for common spatial and physical barriers. A consumer, who has that person. Like go and visiting them at the drop of a hat” a child with disabilities, emotionally recounted the following (P22A60). scene, which she observed between a medical specialist and Within doctors’ surgeries, power differences between her son: consumers and general practitioners or medical specialists are less pronounced than in the hospital setting. The consul- He [the doctor] made him sit on the bench so he could see him tation space in doctors’ surgeries is generally limited to one- eye to eye, and explained everything. He wouldn’t even look at on-one interactions, except in instances where consumers me, and I thought, this is great. He called him by name, and are accompanied by a carer or family member. The duration explained everything to him as a seven-year-old and he [my son] of the professional relationship between a consumer and took it all in, you know. As a mother of a child with a disability, their doctor influences the structure of their relationship. it just—it meant so much to me, you know, that someone would The longer a “patient–doctor” relationship has been estab- take the time. (P1A3) lished, the more relaxed interactions are likely to be. In this scenario, the consumer is in a position of greater power than Tailored Care the patient in the hospital bed and is therefore more likely to establish their presence. In a doctor’s surgery, the consumer Tailoring care to meet individual consumer needs is a pro- influences, to some degree, when an encounter will occur as cess—“a consultative thing” (P4A13)—in which consumers they have usually initiated the appointment. The extent to and experts listen to each other and act. Access to experts which consumers maintain control of an encounter depends they know and trust also influences consumers’ receiving tai- on how the situation unfolds and how each actor responds to lored care. Consumers feel valued within the expert–con- the other. sumer relationship when experts listen and act: 8 SAGE Open All I said to the first doctor was that I have a lot of difficulty with than triage. So, I finally said to her, when she stopped talking to everyone being around me when I don’t have any control. I’d no the IT person—I said, “I’m 57 years old, I’ve had chest pain for sooner said it than sort of extraneous people were moved away. 16 hours, and my pulse is so erratic I can’t count it.” So she So, he heard every word that I said, and put the appropriate finally looked up and said, “Just a minute,” and came rushing amount of action. (P8A27) around and got a wheelchair. By the time my friend parked the car, you know, and got in, I was already in the resuscitation room and they had lines put in, and they already had defibrillated the Tailoring care to meet consumers’ emotional needs is also first time by the time he came in. So, that’s how serious it was. important. An excerpt from a consumer interview provides Like, my pulse was hitting 250. So—so now I know to tell insight into ways in which consumers and experts collabo- people. (P8A41) rate to ensure that consumers receive tailored care that meets their emotional needs. This consumer has a chronic life- Access to experts when consumers need it and to experts threatening illness. Together, he and his general practitioner that consumers know and trust contributes to consumers have constructed a scenario that they will play out when the receiving tailored care. Prompt access to experts is often lim- consumer reaches a point where he wants to “give up” ited to consumers whose condition requires immediate atten- (A27r105): tion or who are in the final stages of life: We have a code now. So I told him, “Well, when I get to the Because of my condition, [the doctor is] very accessible. If I point—to that stage again, I’ll just tell you that I’m ready for a have any concerns at all, I can ring him. Usually, obviously, he’s short trip to Switzerland.” He says, “Is there anything that I can not the one that answers the phone, and I tell the nurse or the do to help that I’m not doing?” I said, “Yes. When I come in and receptionist, whichever one answers the phone [ . . . ] and he I look really bad—no matter what—I want you to tell me how usually calls back within one to two hours at the most. (P4A13) well I’m doing. I promise you that I’m going to pretend that I believe you.” (A27r107) Another consumer, who was caring for a family member who was in the final stages of life, explained in her digital When consumers feel that experts do not listen and there- story how “the specialist had given me all of his contact fore do not tailor their care, consumers’ needs are either not numbers and I’m allowed to ring 24/7 if needed” (P16A52). met or are not met in a timely manner. One consumer’s digi- Access to experts is not always so readily available for tal story includes an image of males in “slave gangs” fol- other consumers. During consumers’ open discussions in the lowed by an image of the Australian Indigenous flag. The digital storytelling workshop, two participants, who are both images are accompanied by the consumer’s voice over that mothers of adult children with mental illness, explained how refers to experts “not listening because they don’t have to” they were excluded from participating in any aspect of their (P13A49). The symbolism of the images links the consum- children’s care. It was unclear, from the conversation, what er’s cultural identity to concepts of oppression and exclu- the mothers’ legal status was in relation to accessing infor- sion, which are expressed in the consumer’s spoken words. mation or being involved in their children’s care. Nonetheless, Consumers also revealed that sometimes experts hear and both mothers expressed concern for their children and were listen but do not act. During open discussions in the digital upset and angry that “the system took them [their adult chil- storytelling workshop, one consumer related to the group dren] away” (P17A56). how experts on a hospital ward listened to him “crying, turn- These consumers have no way of knowing whether their ing and screaming in pain” (P15A56) without acting. children are receiving tailored care and they are excluded The process of tailoring care also requires consumers to from contributing in any way to their child’s care. One of the listen to and to act on experts’ advice. One consumer related mothers described how she had asked for and needed help a story of how when he was on holidays interstate, he needed from experts when her son was admitted to the hospital psy- to present to the ED of a public hospital. On arrival at the ED chiatric unit. “Nobody ever phoned me, nobody ever “the triage nurse was on the phone and the computer at the returned my calls” (P17A56). For this consumer, accessing same time and said ‘Just take a seat, I’ll be with you in a few an expert who had “passion, professionalism [and] intelli- minutes’” (P8A41). The consumer then recalled previous gence” was important and akin to “finding a friend” advice given to him upon discharge from a hospital in his (P17A56). The other mother explained that experts had told home city. The discharge doctor had advised, her, “we can control our patients better without the family around” (P17A56). The next time you get sick, if you’re not here when that happens, Accessing experts close to their home and in settings you need to emphatically tell them how unwell you are, because familiar to consumers supports tailored care. Sometimes you never look it. consumers have to travel from regional or remote areas to capital cities or larger regional hospitals to receive care. So those words came back to me when I was in Melbourne, and Being away from family and support networks is isolating. so I didn’t go and sit down. I just stood there for a few moments, Consumers prefer the familiarity of smaller regional hospital and she [the triage nurse] was trying to get a bloody application to work on her computer, and that’s what was more important facilities, which they believe foster more personalized care: Chamberlain-Salaun et al. 9 I can remember going into the ED one day and just walked key processes: contact with or immersion in an unfamiliar through the door—and that’s all I did, was just walk through the culture and loss of familiar social roles, cues, and practices door—and the girl behind the counter said, “Hi [consumer’s (Irwin, 2007; Oberg, 1960). The environment of health care name], come on straight through.” It made it all bearable, for a is a microculture consisting of physical objects, ideas, start. It made me confident that I wasn’t just a number, I was beliefs, and institutional processes, which are unfamiliar to being treated as a person. It made me glad that I was being consumers (Edwards Lenkeit, 2014). In addition, technical treated in [ . . . a regional town], and not in a capital city where terminology is used, which may be difficult for consumers to possibly I may have been just a number. Yes, as I said earlier, it understand (Zeng-Treitler et al., 2008). When people unex- made a really bad situation feel a lot better. (P4A13) pectedly enter this microculture, they leave behind their expectations of everyday life and take on a consumer role Discussion (Plummer, 2012). Unexpectedly entering the social world of health care is Regardless of whether a consumer’s unexpected entrance is akin to “taking a first trip to a foreign country” (Ramsden, the result of an accident, a diagnosis, or being a carer of 1980, p. 289). The difference being that a person taking a someone who has experienced either, consumers experience first trip to a foreign country is better prepared for their expe- all stages of the grounded theory Outsiders in the experts’ rience than a person making an unexpected entrance into the world. Although consumers generally move sequentially social world of health care. A trip to a foreign country is usu- through the stages of the grounded theory, the stages may ally planned; departure and return dates are chosen; some overlap or be revisited. For example, a consumer who has knowledge of the language, norms, and culture of the coun- received a diagnosis may experience each stage of the pro- try are acquired and travelers will have an idea of what their cess only to find themself catapulted back to an earlier stage budget will allow in relation to accommodation and other and assigned a new diagnosis. A new diagnosis has the effect expenses. Consumers do not have the luxury of preparing for of an unexpected reentrance and may occur at any stage of their entrance into the social world of health care but instead the process. A consumer’s previous experience gives them make an unexpected entrance into a new social world where some familiarity with the process of being an outsider in the they need to learn a new role. expert’s world but it does not change their outsider status. Classifying individuals into social groups is a process of The grounded theory Outsiders in the experts’ world social categorization (Abrams & Hogg, 1990) in which indi- explains the process that people experience when they unex- viduals not only categorize others but also consider whether pectedly enter the social world of health care and become others belong to their own “in-group, or to some other, out- health consumers. The theory emphasizes the outsider status group” (Ward et al., 2001, p. 9). In the seminal work The of consumers in a context in which health professionals Social System, Parsons (1951) states that categorizing people maintain their status as experts. The status of consumers as as “being sick” is a social condition because it involves peo- outsiders contradicts the central role that they are given in ple entering into the socially constructed “sick” role. models of consumer-, patient-, and/or person-centered care. Consumers, however, do not collectively form a subculture Key findings from this study relate to the culture shock that around the role because the undesirable state of being sick is people experience when they unexpectedly enter the social not a motivating factor for joining this group (Parsons, 1951). world of health care and the social categorization of roles Since Parson’s (1951) work, the number of people with within that world that result in them having to learn a new diagnosed illness has increased and the concept of consumer role and establish a presence to receive tailored care. support groups has developed. The experience of being socially categorized as being sick is not, therefore, necessar- Culture Shock ily as isolating as Parson infers. Some consumers in the study, particularly parents of children with disabilities, culti- Consumers experience cognitive responses to the shock of a vate support by seeking out and connecting with consumers diagnosis (Anderson et al., 2010) and the shock of suddenly experiencing similar situations. Findings in the literature being subjected to an unfamiliar culture (Edwards Lenkeit, show that joining a support group enables consumers to iden- 2014). Within the socially constructed world of health care, tify with others through shared experiences (Doran & people who willingly assume the role of experts provide care Hornibrook, 2013; Thompson et al., 2014) and diminishes to those who unwillingly assume the role of consumers. thier initial feelings of culture shock. Interacting with others Being a health consumer is not a role that people voluntarily and/or being a member of a support group creates a sense of choose. A diagnosis or recurrent symptoms engender a real- belonging that alleviates these consumers’ feelings of isola- ity that thrusts people into the role. tion and “normalizes” their situation. This form of normal- Anthropologists use the term culture shock to describe ization helps consumers to establish a presence in the social feelings of disorientation, frustration, and helplessness that world of health care and in turn confront the dichotomy of people encounter when they are subjected to an unfamiliar “us” and “them” that exists between consumers and experts. culture (Edwards Lenkeit, 2014). Culture shock involves two 10 SAGE Open It is widely recognized that the relationship between con- here, changing perceptions of self attest to consumers view- sumers and experts is important for individuals’ health and ing their physical body differently after an unexpected the course of illness (Murtagh, 2009; Tsai et al., 2015). The entrance into the social world of health care. Some consum- relationship, however, is complex. Consumers are essentially ers are more circumspect, however, and their perceptions of nonvoluntary participants in a relationship in which consum- their physical self do not match the ways in which others ers struggle to define and learn their role. Although consum- perceive them. ers may not define their role in terms of a collective consumer Although the onset of illness can change consumers’ per- group, the consumer role is “universal” because the institu- ceptions of their body, this does not necessarily mean a loss tional and social expectations and obligations placed on con- of self (Mozo-Dutton et al., 2012). Rather elements of one’s sumers are applied to all consumers regardless of former self can still be preserved and even enhanced through demographics such as age, gender, occupation, ethnicity, or the experience of illness. This process is beautifully described status in other spheres (Morgan, 1982; Parsons, 1951). This in Ken Plummer’s (2012) account of his own illness in which notion of universal expectations leads to consumers exerting he explains that although his body became a “thin body,” a their presence through strategies that include choosing a par- “tired body,” an “encephalopathic body,” a “transformed ticular voice and establishing relationships with experts that body,” and a “new body,” he remained an “interactionist aca- have the potential to transcend professional boundaries in a demic self.” Plummer’s preservation of self enabled him to crisis, or at the end of life. reflect on, give meaning to, and write about his experience of Unlike the consumer role, the expert’s role is “collectiv- illness. ity-oriented not self-oriented” (Parsons, 1951, p. 434). Regardless of social categorizations associated with roles Collectively, experts form a culture that comprises subcul- and illness, and changing perceptions of self, the quality of tures of experts from individual professions (e.g., medicine, relations—at the interaction level—between consumers and nursing, psychology). Membership into these groups is a experts is central to the delivery of health care. The delivery selective process, and education, professional qualifica- of health care is an interpersonal process (Soklaridis et al., tions, and social categorization legitimize roles. Experts 2016). Until the early 1970s, the traditional paternalistic learn, develop, and maintain their professional identities model of health care dominated the “doctor–patient” rela- through formal education, experience in their role and con- tionship in Western health care systems. Within this model, sumers’ expectations of their role (Biddle, 1986; Broderick, the relationship is characterized by a dominant doctor inter- 1998; Haslam, 2014). Experts are proficient in separating acting with a passive patient (Kaba & Sooriakumaran, 2007; their professional and personal identities. Consumers, on the Pilnick & Dingwall, 2011). Doctors act as consumer guard- contrary, do not have the luxury of separating their identi- ians and use their skills to determine the patient’s condition ties. The manifestation of illness in the physical body is not and to prescribe tests and treatments that they consider best separate to consumers’ other social identities; body and self for the patient, who passively consents (Ha & Longnecker, are inextricably entwined. As consumers confront the 2010). While some emergency situations may still justify the dichotomy of “us” and “them,” they learn how to manage use of this model, health care models have since evolved to the collective professional boundaries traditional to the incorporate other health professionals and the role of con- social world of health care. Managing these professional sumers as active participants in their health (Janamian et al., boundaries does not automatically result in consumers hav- 2016; Kaba & Sooriakumaran, 2007). Under evolved models ing license to transgress; however, they can learn how to of care, a range of experts, including nurses, psychologists, push the boundaries to the point of receiving a level of tai- and allied health professionals, are now instrumental in lored care that meets their needs. delivering health care (Bury, 2004) and the traditional pater- nalistic doctor–patient relationship has, in theory, transi- tioned to a partnering relationship, which is patient-, person-, Social Categorization of Roles consumer-, or relationship-centered (Duggan & Thompson, When illness becomes the foundation for socially categoriz- 2011; Soklaridis et al., 2016). However, while findings in ing consumers, individuals’ perceptions of self cognitively this study evidence these changes, the findings also highlight shift (Charles et al., 1997; Mozo-Dutton et al., 2012). A cog- that achieving access to tailored care is not an easy process nitive shift means accepting and integrating illness into one’s for consumers to engage in nor is it without challenges. life and “liv[ing] illness fully” (Frank, 2002, p. 3). Consumers Current health policy attempts to bridge dichotomies in this study demonstrate living illness fully as evidenced by between consumer outsiders and expert insiders by introduc- their responses to emotional fluctuations and changing per- ing strategies and models of care that seek to place consum- ceptions of self during the unexpected entrance phase of the ers and their families at the center of care and to empower consumer experience. In a study of the impact of multiple and support them to participate in their own health and health sclerosis on perceptions of self, Mozo-Dutton et al. (2012) care (ACSQHC, 2011a; Mastro et al., 2014). Risk reduction found that the onset of illness changed study participants’ is a key impetus for introducing such policies. Reducing the perceptions of their body. Similarly, in the study reported risk of adverse events and increasing consumer safety within Chamberlain-Salaun et al. 11 the context of health care is a win-win for both consumers sectors and is transferable to other contexts in which con- and experts and the health systems within which they inter- sumers unexpectedly enter experts’ social worlds, for exam- act. However, while a risk reduction approach is necessary, ple, the justice system or the welfare system. The scope of approaches are largely policy driven and generally fail to this study does not provide the opportunity to extend the consider what consumers really need and want from experts. theory over and above the substantive area of the social Dichotomies fundamentally result from contradictory sets world of health care. The applicability of a formal grounded of underlying assumptions. Health systems are based on risk theory to broader environments has not, therefore, been management and economic assumptions that favor transac- substantiated. tional not relational interactions. Risk management strate- No serious flaws limited the study. It is noted, however, gies include evidence-based practices that are underpinned that data were collected from consumers and experts in one by positivist scientific knowledge, which favor a biomedical Australian regional city only. Also, information obtained approach to interactions between experts and consumers. In from demographic questionnaires was incomplete. Five contrast, consumer-centered approaches are based on bio- consumers and three experts did not complete demographic psychosocial perspectives that combine ethical values, con- questionnaires. These participants were observed interact- sumers’ preferences, psychotherapeutic theories, and ing with experts and consumers, respectively, and were negotiation theories (Bensing, 2000; Jensen et al., 2013). given a study information sheet and provided consent prior Economic imperatives to achieve more with less impose to observation sessions being conducted. The lack of demo- structures that reward experts and health service providers graphic data relating to these participants did not affect the for quantity of interactions over quality of interactions. quality of the grounded theory but would have provided Although the importance of the quality of interactions additional information relating to variation in the total between consumers and experts is recognized, it is often sample. measured through quantitative means. It is not all doom and gloom; however, there is a shift Conclusion afoot. Current trends in research suggest that the human The grounded theory Outsiders in the experts’ world explains qualitative aspect of health is gaining momentum, particu- the process of interaction between consumers and experts larly at the consumer–expert interaction level (The Beryl across the continuum from consumers’ unexpected entrance Institute, 2019; Brach, 2014; Johna & Rahman, 2011) and into the social world of health care to receiving tailored care that consumers are participating in their health care (Chamberlain-Salaun, 2015). As outsiders, consumers have (Entwistle, 2009; Rocque et al., 2019; Röing & Holmström, to navigate and negotiate their way in the social world of 2012). However, progress toward empowered individuals health care to access required information and receive care who are in control of their health and health care is slow that is tailored to their needs. Within this social world, con- (Foot et al., 2014) and care that is truly consumer-centered is sumers and experts act and interact in health care discourses currently the exception not the rule (Brach, 2014). Bridging and make meaning of their experiences. dichotomies that exist between outsiders and insiders means Consumer-centered health care has strong policy support. acknowledging consumers’ and experts’ differing perspec- Yet, the findings from this study establish that for partici- tives, knowledge, skills, needs, and desires in the process of pants, consumer-centered care is the exception not the norm. improving consumers’ experience of health care. Understanding consumers’ needs and their perceptions and meaning making of interactions with experts is valuable. The Study Strengths and Limitations theory contributes to understandings and knowledge of what it means to be a consumer of health care—not a consumer A key strength of this study is the sample size and the varia- who is categorized according to their illness or condition, or tion and scope of the data set. Data were collected and gener- by the setting in which they receive care or according to the ated from 32 participants representing 23 consumers and specific health professionals with whom they interact. nine experts. The scope of the data set includes data collected Gaining insight into the substantive area of inquiry enables and generated via a range of methods. Data generation/col- improved efficiencies in the delivery and quality of health lection method and quantity of data by participant type are care. Importantly, gaining insight into consumers’ experi- presented in Table 1. In addition, the lead author’s commit- ence of interacting with experts also provides a foundation ment to the essential grounded theory method of memo writ- for considering relationships and ways of interacting between ing resulted in a “bank” of 120 memos. Having access to that consumers and experts that acknowledges and respects each quantity of decision-making records and thought patterns other’s humanness. over the course of the study supported the development of the grounded theory. Declaration of Conflicting Interests Another key strength of this study is the potential trans- ferability of the findings. The grounded theory Outsiders in The author(s) declared no potential conflicts of interest with respect the experts’ world is theoretically applicable across all health to the research, authorship, and/or publication of this article. 12 SAGE Open Funding design: From Corbin and Strauss’ assumptions to action. 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Outsiders in the Experts’ World: A Grounded Theory Study of Consumers and the Social World of Health Care:

SAGE Open , Volume 10 (1): 1 – Jan 29, 2020

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Abstract

This article presents findings from a grounded theory study, which investigated interactions between health professionals and consumers. The authors used Corbin and Strauss’s evolved version of grounded theory, which is underpinned by symbolic interactionism. The study sample included 23 consumers and nine health professionals. Data collection methods included demographic questionnaires, interviews, consumer diaries, digital storytelling, observations, and field notes. Data analysis was conducted using essential grounded theory methods. The resultant grounded theory consists of five categories: (a) Unexpected entrance, (b) Learning a new role, (c) Establishing a presence, (d) Confronting the dichotomy of “us and them,” and (e) Tailored care. Findings suggest that despite consumers and health professionals’ roles, consumers are outsiders in the social world of health care. Progress toward empowered consumers who are in control of their health and health care is slow and care that is truly consumer-centered is still the exception not the rule. Keywords grounded theory, consumer-centered care, health care, health professionals, symbolic interactionism individual patient preferences, needs and values” (Committee Introduction on Quality of Health Care in America, 2001, p. 6). Around the Until the 1970s, a biomedical model of health predominated same time, other definitions of patient-centered care took into in Western health care systems. This model prioritized the account individuals’ “desire for information, sharing decision impact of illness on the human body, over consumers’ expe- making and [experts] responding appropriately” (Stewart, rience of care. The introduction of Engel’s (1977) biopsy- 2001, p. 445). The Australian Commission on Safety and chosocial model of health care in 1977 shifted the culture of Quality in Health Care (ACSQHC, 2012) later extended the health care to include consumers’ psychological and social definition to include health professionals forming partner- contexts being considered in conjunction with their illness ships with consumers, their families and carers. during treatment. As this cultural shift continued to evolve, Despite models of health care shifting away from an ill- the relationship between consumers and health professionals ness focus, to the inclusion of consumers’ biopsychosocial developed greater equality, and consumers’ rights to self- contexts and more recently, to consumers being central to determination and autonomy were recognized (Deber et al., decisions about their health care, the representation of con- 2005; Will, 2011). sumers as patients in the literature often categorizes people This cultural evolution has led to the concept and termi- according to their illness or contextualizes them within spe- nology of patient-centered care (also referred to as consumer- cific health settings (see Ferri et al., 2015; Lammers & centered care or person-centered care) becoming mainstream. Happell, 2003; Mathur et al., 2013; Tobin et al., 2002). Although the concept of patient-centered care was introduced Interactions between consumers and health professionals are in the mid-1950s (Balint, 1969; de Haes, 2006; Groene, 2011), it did not gain traction until the release of a landmark James Cook University, Cairns, QLD, Australia report in the United States, titled Crossing the Quality Chasm University of New England, Armidale, NSW, Australia (Committee on Quality of Health Care in America, 2001). 3 Massey University, Palmerston North, New Zealand The report names patient-centered care as one of six key Corresponding Author: improvements required in the U.S. health care system. In Jane Mills, Pro Vice Chancellor, College of Health, Massey University, addition, the report provides the first definition of patient- Palmerston North 4410, New Zealand. centered care as “care that is respectful of and responsive to Email: j.mills1@massey.ac.nz Creative Commons CC BY: This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). 2 SAGE Open central to delivering health care that is patient- or consumer- Definitions centered. Yet research often focuses on interactions with spe- In the context of the study and this publication, the authors cific health professionals only (Jangland et al., 2011; use the terms consumer to define a person who accesses Stenhouse, 2011) or addresses interactions from method- health service for their own care or on behalf of someone for ological or conceptual perspectives (see Cahill et al., 2008; whom they care. The use of the term consumer avoids the Drew et al., 2001; Sofaer & Firminger, 2005). passive overtones of the term “patient” and acknowledges Consumer-centered care requires affected people to share that consumers are actual or potential users of health care power and responsibility for their health and health care with services (ACSQHC, 2011b). The use of the term experts in health professionals (Gluyas, 2015; Mead & Bower, 2000). this publication refers to all health professionals. It was an in Supporting people to become more involved in their own vivo term used by consumer study participants to acknowl- health and health care requires insight into their perceptions of edge the expertise of health professionals. interactions with health professionals. The aim of this study was to identify and explain processes of interaction between consumers and health professionals that are not bound by spe- Sample cific health professions, health settings, or health conditions A total of 32 participants from one Australian regional city (Chamberlain-Salaun, 2015). Gaining consumers’ insights and were recruited to and participated in the study. The sample identifying and explaining processes of interactions between included 23 consumers (14 females and nine males) and nine consumers and health professionals has the potential to inform health professionals (eight females and one male). Methods the development of strategies to improve consumers’ health included purposive, theoretical, and snowball sampling care experiences and their health outcomes. (Birks & Mills, 2015). Generation and analysis of data from an initial purposive sample of consumers guided theoretical Study Design sampling of additional participants in an iterative process. Theoretically, sampling health experts resulted in snowball Method sampling of additional consumer participants. Similarly, the Grounded theory is both a research design and a product. The purposive sampling of consumers directed the sampling of researchers used Corbin and Strauss’s evolved version of additional health expert study participants. Consumers were grounded theory, which is underpinned by symbolic interac- eligible to participate in the study if they were 18 years of tionism, as the methodological lens through which to con- age and above and interacted with a range of health profes- duct the study. A more detailed account of links between sionals. Experts from any health discipline were eligible for grounded theory methods and symbolic interactionism and inclusion in the study. the application of the former in light of the latter are pre- sented in an earlier publication (Chamberlain-Salaun et al., Data Generation and Collection 2013). Grounded theory provides a comprehensive and inte- grated approach for identifying dominant processes within Data were generated and/or collected (Birks & Mills, 2015) an area of inquiry, with the aim of developing a theory that via demographic questionnaires, interviews, consumer dia- explains what is actually going on rather than “what should, ries, digital storytelling, observations, and field notes. Data could, or ought to be” going on (Glaser, 1999, p. 840). generation refers to the process of generating data with par- Grounded theory research does not commence from the ticipants via methods such as interviews. Data collection premise of a priori theories. Rather, the researcher begins refers to collecting artifacts from participants or from other with an area of inquiry, which is broad enough to allow the sources such as participants’ diaries, questionnaires, or digi- flexible application of essential grounded theory methods to tal stories. Table 1 presents an overview of the types of data guide the collection, generation, and analysis of data to con- generated and/or collected, the number of participants struct a theory (Charmaz, 2014). The area of inquiry of the involved, and the quantity of data produced. study reported in this article is the process of interaction between consumers and health professionals. The resultant Data Analysis product of a grounded theory research study is a theory that is recognizable to people familiar with internal processes Data were analyzed using essential grounded theory methods relating to the area of inquiry (Hunter et al., 2011). The as ascribed by Birks and Mills (2015). The methods are ini- grounded theory Outsiders in the experts’ world incorporates tial coding, concurrent data generation or collection and five dominant processes: (a) Unexpected entrance, (b) analysis, constant comparative analysis, intermediate cod- Learning a new role, (c) Establishing a presence, (d) ing, theoretical sampling, selecting a core category, advanced Confronting the dichotomy of “us and them,” and (e) Tailored coding and theoretical integration, and writing memos and care (Chamberlain-Salaun, 2015). theoretical sensitivity. Chamberlain-Salaun et al. 3 Table 1. Data Generation/Collection Method and Quantity of Data by Participant Type. Total consumers Total health experts Total participants Data generation/collection method n = 23 n = 9 n = 32 Quantity of data Demographic questionnaire 17 7 24 24 questionnaires Interview 10 7 17 17 transcripts Consumer diaries 3 0 3 20 entries Digital storytelling 7 0 7 6 digital stories Observation 8 5 13 7 hr of observation Field notes 18 A4 pages Initial coding is the first step of the data analysis process. Theoretical integration of a grounded theory conceptually In this phase, data were scrutinized in units and labeled with brings together the elements of the grounded theory process codes. Concurrent generation or collection and analysis of into a theory that explains phenomena (Strauss & Corbin, data are “interrelated processes” (Corbin & Strauss, 1990, p. 1994). In this study, the use of the advanced coding tech- 419; italics in original) that underlay the operation of nique of storyline (Corbin & Strauss, 1990; italics in origi- grounded theory (Glaser & Strauss, 1967). Using this nal) enabled the integration of the grounded theory. method, each round of generated or collected data in the Theoretical sensitivity and writing memos are also key study was analyzed before the next round of data generation components of a grounded theory process. Theoretical sensi- or collection commenced. The constant comparative analysis tivity is a researcher’s ability to recognize nuances in the method uses inductive reasoning to extrapolate patterns data, to extract data elements relevant to the developing the- across individual data units to form conceptual categories ory and to reconstruct meaning from data generated with par- (Bryant & Charmaz, 2007), whereas abductive reasoning ticipants (Corbin & Strauss, 2008; Mills et al., 2006; Strauss “bring together things which one had never associated with & Corbin, 1990). Theoretical sensitivity is influenced by a one another [in] a cognitive logic of discovery” (Reichertz, researcher’s “personal and temperamental bent” (Glaser & 2010, para 16). Using constant comparative analysis, inter- Strauss, 1967, p. 46), their intellectual history, and their per- mediate codes were identified. During the intermediate cod- sonal and professional experiences (Strauss & Corbin, 1990). ing process, the researcher moves iteratively between initial Throughout the study, the writing of theoretical, analytical, and intermediate coding to connect codes and categories into and conceptual memos (Glaser, 2004; Thornberg & Charmaz, more conceptual-level categories. 2011) lubricates the cogs of the ground theory research pro- Theoretical sampling is a method unique to grounded cess from the planning phase through to the end of a study theory. The distinguishing characteristic of theoretical sam- (Birks & Mills, 2011). pling is that it is an iterative process whereby future data collection is guided by concepts derived from analysis of Ethics data from the previous round of data collection or generation (Corbin & Strauss, 2008; Glaser, 1978; Glaser & Strauss, Ethical considerations were adhered to in accordance with 1967). Theoretical sampling determines, where, how, and the Australian National Statement on Ethical Conduct in from whom to collect or gather further data to elaborate and Human Research 2007 (The National Health and Medical refine categories in a developing theory (Birks & Mills, Research Council et al., 2014). The research study received 2011; Charmaz, 2014). ethics approval from the Cairns and Hinterland Human A core category is the overarching category that links all Research Ethics Committee (HREC) and the James Cook the categories of a grounded theory; it reassembles the parts University HREC. All study participants were given a Study into a whole (Birks & Mills, 2011; Corbin & Strauss, 2008). Information Sheet and provided written consent prior to par- Corbin and Strauss (2008) use the metaphor of an umbrella ticipating in the study (Chamberlain-Salaun, 2015). to explain the concept of the core category. The categories, or concepts, of a grounded theory resemble the umbrella’s Findings spokes. Without the material covering the spokes, the spokes are just spokes and are of little use. The material links the The grounded theory Outsiders in the experts’ world presents spokes and gives the object form and use; it becomes an what happens when people enter the social world of health umbrella. Researchers can be assisted in identifying a core care and take on a consumer role and how processes of inter- category by asking themselves how they would conceptual- actions between consumers and experts are enacted. The ize their findings in a succinct way (Corbin & Strauss, 1990). contingent relationship between what and how (Charmaz, A core category is central to the integration of a grounded 2014) addresses the question, “why are consumers outsiders theory because it encapsulates and connects all the compo- in the experts” world? Regardless of the key roles of con- nents of a theory (Strauss & Corbin, 1990). sumers and experts in the social world of health care, 4 SAGE Open Figure 1. Grounded theory model of outsiders in the experts’ world. findings in this study suggest that consumers are outsiders in with a tube hanging out of [their] throat, looking at a ceiling and this nurse leaning over just saying, “Relax” [ . . . ] It is very scary a world dominated by experts who drive the machinations of to wake up like that, not moving, not knowing what’s going on. the social world of health care. (P5A26) The grounded theory consists of five categories and their subcategories (Figure 1): (a) Unexpected entrance (Emotional The following consumer had not seen the inside of a hos- fluctuations, Changing perceptions of self), (b) Learning a pital for 30 years before experiencing chest pain at home in new role (Acquiring knowledge, Learning the language of the middle of the night and being taken to hospital by health care, Confronting mortality, and Cultivating support), ambulance: (c) Establishing a presence (Gaining confidence, Choosing a voice, and Establishing relationships, (d) Confronting the I didn’t know what to expect and all the rest of it. You know dichotomy of “us and them,” (e) Tailored care (Listening and what I mean. If you go there because you cut yourself open and acting; and Accessing experts). Each category is discussed in you need stitches, then you know what’s going to happen. detail below and representative participant quotes are used to (P4A13) exemplify findings. Quotes are coded as participant (P) and artifact (A) number. Four hours later, this same participant was diagnosed with leukemia. His feelings of disbelief were emphasized in his retelling of the event. “I said to the doctor ‘it must be wrong, Unexpected Entrance you’ve made a mistake with somebody’s blood, it’s not mine. People make unexpected entrances into the social world of I’m a regular blood donor, I just gave blood six weeks ago. health care and become consumers as a result of illness or injury. Surely it would have been picked up then’” (P4A13). Illness can be either a diagnosed condition or a range of persis- Consumers with persistent but undiagnosed symptoms tent symptoms that affect a person’s health and well-being but similarly experience the emotional fluctuations experienced defy diagnosis. Becoming a health care consumer can also be by consumers who have received a diagnosis. They feel frus- experienced vicariously by those who are responsible for pro- trated, isolated, and impatient; frustrated because they do not viding care or support to someone else experiencing illness or have a label to attach to their symptoms and isolated because injury. Unexpected entrances are fraught with emotional fluc- they do not receive the same level of support and understand- tuations and changing perceptions of self that mark the begin- ing from others that a diagnosis often attracts. ning of “another chapter” (P5A26) in a person’s life. After the initial emotional fluctuations of an unexpected Unexpected entrances into the social world of health care entrance, peoples’ perceptions of “self” change. Perceptions cause emotional fluctuations that exceed everyday emotional of both the internal self and the physical self are intertwined experiences. Before entering the social world of health care, with how consumers perceive themself, how others perceive people cannot imagine what it is like to wake up in hospital them, and how they think others perceive them. After being Chamberlain-Salaun et al. 5 in hospital for extended periods of time, consumers are faced information, treatment and medication options, and for self- with the challenge of learning to reconnect with their previ- medicating via online medication purchases. Some consum- ous perceptions of self and to trust themselves again. One ers are more wary of this source of knowledge than others consumer related the experience of returning home after 9 and approach with caution, recognizing that “there’s no guar- weeks in hospital. His wife was at work all day, so he was antee of quality on the Internet” (P3A10). home alone: Consumers who care for someone with a health condition acquire knowledge about their role through the experience of All of a sudden I was at home alone. It made no sense, because representing and advocating for another. These consumers I was well or reasonably well, and I could look after myself. I explained how their experiences influence their interactions could make myself tea and coffee and have lunch and all the rest with experts. A mother explained that prior to giving birth of it. But it was just the fact that there was nobody here, when her approach with doctors was “to tell them what the prob- you’re used to having, you know, all the ward staff there at your lem was, listen to what they’d say and not really enter into a call. (P4A13) discussion” (P11A46). Since becoming a parent, the con- sumer acknowledged that she no longer “just takes the doc- The consumer’s recount of his internal dialogue provides tor’s word” (P11A46). She attributed her increased insight into his attempts to bring some perspective to the assertiveness to a combination of knowledge gained over situation. I told myself, “stop being a bloody idiot and get on time, having a long-term relationship with her general prac- with it. What are you concerned about? You’re well” titioner and “just growing older” (P11A46). (P4A13). To understand what is happening to them and around The changed physical self of another consumer, who is in them, consumers must learn the language of health care, a wheelchair as a result of an accident, led him to think about which includes new words and their meanings. Consumers his body in new ways. Without the sensory perception of his also assign their own meanings to previously known words, body from the stomach down, his diet and weight have and these meanings may change over time. For one study become priorities for maintaining health because “you can’t participant (P4A13), the word leukemia meant, “you’re tell when your belly’s full” (P5A26) and weight gain can dead” when he was diagnosed. His construction of meaning lead to health complications. was based on what he had seen on television. Following ini- Dichotomies between how consumers perceive them- tial discussions with his doctor, the meaning of the word leu- selves and how others see them are not uncommon. One par- kemia morphed into “the fight of your life” and then as he ticipant related how an expert referred to her condition as “a met and heard stories from other patients living with leuke- significant physical disformity [sic]” (P7A32). This was in mia, the word came to mean “remission” and the possibility stark contrast to the way in which the consumer perceived of a fulfilling life. her physical condition. She explained that she did not con- Humor, as a component of language, is often used in con- sider her condition to be “that bad” nor did she perceive her- sumer–expert interactions. Factors which influence when self as someone who “looked funny or walked funny” and how humor is used include the relationship between con- (P7A32). sumers and experts, how consumers are feeling on a particu- lar day, and the point at which consumers are on the spectrum of their condition. An expert’s comment highlights how the Learning a New Role use of humor changes as consumers adapt to their diagnosis, The role of a health consumer is largely undefined. Similar to “a positive outcome diagnosis [is] not a joking matter [but] other undefined roles in life—parent, spouse, sibling—the once [consumers] have got used to their diagnosis they’ll consumer role is learned and refined through experience. come in and have a joke with the staff” (P20A58). Similarly, Learning the role of consumer incorporates acquiring knowl- a consumer who has a chronic condition recounted a frequent edge, learning the language of health care, confronting mor- exchange that he has with one of his health experts: “Almost tality, and cultivating support. every time I see him, I walk in and he says, ‘So how are Consumers acquire knowledge through their sensemaking you?’ and I say, ‘I’m not dead yet’ and he says, ‘There’s a of information and through the experience of living with a bonus we weren’t expecting’” (P4A13). health condition. They access information from a range of When the role of being a consumer is associated with a sources including experts, the Internet, and from members of life-threatening or life-limiting illness, consumers are acutely their social networks. One consumer explained how she used confronted with their own mortality. Some consumers accept the printed information about migraines, which her pharma- that the inevitability of dying is part of living and they cist provided, as a basis for collecting further information via acknowledge that this makes “the burden [of illness] easier to the internet. The consumer then used her newfound knowl- carry” (P8A27). Consumers who accept their mortality are edge of migraines and treatment options as a starting point more likely to speak openly about death, not to mask their for discussions with her general practitioner. Consumers use fear of death but to “lighten” life. A general practitioner study the internet in varying degrees to search for general health participant recounted how one of her patient’s acceptance and 6 SAGE Open openness about illness and death guided frank discussions It is challenging for consumers to gain confidence in their between them (P22A60). The same participant added that interactions with experts when experts exclude them from speaking openly about death removes the proverbial elephant discussions or when consumers perceive that their inclusion in the room and alleviates the “need for euphemisms” in discussions is tokenistic. The following comment reflects (P22A60). a consumer’s perceptions of mental health experts as nonin- Cultivating support includes consumers accepting unre- clusive: “You see what you want to see, hear what you want quested support when it is offered and requesting support to hear and know what you want to know” (P17A56). Over when it is needed. Family, friends, and social networks are time, the lived experience of illness enables consumers to sources of practical, financial, and emotional support. gain confidence. A participant who had been a consumer for Consumer participants recounted instances of receiving about 4 years at the time of interview had spent numerous overwhelming support, as the following interview excerpt extended periods in hospital. His recount of a scenario dem- highlights: onstrates the ways in which confident consumers can change the course of interactions with experts: My friend from church has been mowing my lawn and trimming my edges and cutting my trees since [I got sick]. He has never he [the registrar] would ask me a question and I would begin to accepted any payment for it. He has just—he just took it on answer, and only halfway through, he would talk over the top of himself that that’s what he was going to do. [ . . . ] people would me. I let him go, and he did that [for] probably six or seven come over with home-cooked meals so that we didn’t have to do minutes. This was in the ward, yes. Like, there was him and— it, and yes, there was just so much support. When we got into because there’s usually a group of between three and five of financial problems, they whipped the hat around at church and them. Yes, there was him and two or three others, I forget how came up with literally thousands of dollars over the last four many. But he was doing all the talking. Eventually, I pulled it up years to help us out. (P4A13) and I said, “Listen, do you want to hear what I’ve got to say, or don’t you?” I said, “Are you actually interested?” Consumers living with mental illness, or who are par- ents or carers of people living with mental illness, are He said, “What do you mean?” often isolated in their journey prior to seeking profes- sional support. For these consumers, seeking support from I told him. I said, “You asked me a question, I start to talk, and health professionals is often a “cry for help,” which is not then you talk over the top of me. Now, do you really want to always heard or does not meet their expectations. A con- know, or don’t you?” I said, “Because if you’re just going to talk sumer who participated in the digital storytelling work- over the top of me and not bother listening to what I’ve got to say anyway, then I don’t want you treating me.” Actually, he shop titled her story Invisible (P17A53). The digital story was—he really changed his attitude after that. (P4A13) speaks directly to health professionals and tells the story of her family’s struggle of living with the “nightmare” of her son’s mental illness. The story opens with images of To be heard, consumers have to find their voice and use it. family photos, an eerily haunting soundtrack and the par- Consumers use a range of “voices” or approaches when ticipant’s voice; “Invisible. Do you see us? Do you hear interacting with experts, including a “squeaky wheel gets us? Do you know us?” (P17A53). Rather than meeting the more oil” approach, a warrior approach or a gentle, patient family’s cry for help, seeking professional support ampli- approach. Some consumers use “a squeaky wheel gets more fied the family’s struggle. They felt even more isolated as oil” (P11A46) approach as their mantra. One consumer they searched for health professionals “with heart and explained, “say what you need, what you think you need soul” (P17A53) and more often than not were unable to [because] no one’s going to come looking to help” (P11A46). access this level of care. The participant explained that before coming to this realiza- tion she would answer “I’m fine” (P11A46) anytime an expert asked her how she was feeling. Establishing a Presence Using the “squeaky wheel” approach does not always pro- As consumers learn their, role they establish their presence in duce desired results; external factors also influence outcomes. the social world of health care. To establish their presence, A consumer’s digital story tells of his experience of arriving consumers must first gain confidence and choose a “voice.” at a hospital emergency department (ED) with severe back Confident consumers assert their presence and provide feed- pain. The consumer used a “squeaky wheel” approach and back directly to experts. In choosing a voice, consumers repeatedly asked to have an ultrasound or an MRI (magnetic make decisions about how they will interact with experts. resonance imaging) so that the underlying cause of his pain The “voice” that a consumer chooses may be the result of could be ascertained and he could be given appropriate treat- their increased confidence, the influence of their individual ment. His requests were refused without explanation. personality, or it may reflect where they are on the spectrum Taking a “warrior” approach is familiar to consumers who of their illness or condition. are carers. As carers for others, they “fight” for those who Chamberlain-Salaun et al. 7 cannot advocate for themselves. In the digital story titled Confronting the Dichotomy of “us and them” Invisible (P17A53), a consumer included an image of two The social world of health care dichotomizes consumers (us) dinosaurs fighting and the spoken words, “Then we came to and experts (them). In health care settings, the dichotomy of you. Then we must become warriors” (P17A53). The image “us and them” is characterized spatially, physically and and the consumer’s words, symbolize the constant battle that through the asymmetrical relationship between consumers carers face when they interact with the health system and and experts. The asymmetrical relationship is supported by experts. social structural elements such as culture, systems, and deci- Consumers with life-threatening health conditions tend to sion-making powers engendered by consumers’ and experts’ choose a gentle, patient approach in their interactions with roles. Some consumers and experts confront the dichotomy experts. During interviews and observation, these consumers of “us and them” as they would in a battlefield in which a spoke with, and demonstrated, humility and patience in rela- victor must emerge. These actors do not transcend social tion to their interactions with experts. One consumer structural elements but wield them as weapons. Other con- explained, sumers and experts are willing to transcend structural dichot- omies of “us and them” to create and negotiate reciprocal Attitude is everything. I’ve seen people in there who really interactions that meet each other’s needs and expectations. treated the staff with disdain, you know, because they wanted Health care settings are spatially dichotomized into con- attention and they wanted it now. Whereas, I was always patient, sumer spaces and experts’ spaces, although sometimes the two knowing that there’s more people in there than just me and some overlap. Consumers are generally spatially confined to hospital of them are in a worse condition than me. (P4A13) wards and hospital and medical practice waiting areas. Spaces designated for experts include offices and hospital ward sta- Relationships between consumers and experts are often tions. Consulting rooms and operating theaters are designated established over long periods of time. Of all the relationships spaces into which experts invite consumers to enter. that consumers have with experts, their relationship with The physical positioning of experts during interactions their general practitioner is the most intimate. Consumers with consumers often represents a reality of the division spoke about the changes in their lives that their general prac- between the two groups. In hospital settings, experts often titioner had seen them through: relationship break-ups, stand above consumers who are laying or sitting in hospital depression, the lowest point in their illness, and being close beds. The asymmetrical positioning of consumers and to death. Regardless of the experiences that consumers share experts in these scenes perpetuates a dichotomy of “us and with their experts, professional boundaries are maintained. them.” Although in hospital and private practice consulting Sometimes experts will relax professional boundaries. rooms consumers and experts are physically positioned at For example, they may make exceptions in the last stages of eye-level, the expert’s desk and professional workspace are a a consumer’s life. In this situation, general practitioners physical cue of the dichotomy of “us and them.” might give their personal telephone number to a consumer, Consumers appreciate experts’ attempts to break down but not before considering “what [they] are willing to do for common spatial and physical barriers. A consumer, who has that person. Like go and visiting them at the drop of a hat” a child with disabilities, emotionally recounted the following (P22A60). scene, which she observed between a medical specialist and Within doctors’ surgeries, power differences between her son: consumers and general practitioners or medical specialists are less pronounced than in the hospital setting. The consul- He [the doctor] made him sit on the bench so he could see him tation space in doctors’ surgeries is generally limited to one- eye to eye, and explained everything. He wouldn’t even look at on-one interactions, except in instances where consumers me, and I thought, this is great. He called him by name, and are accompanied by a carer or family member. The duration explained everything to him as a seven-year-old and he [my son] of the professional relationship between a consumer and took it all in, you know. As a mother of a child with a disability, their doctor influences the structure of their relationship. it just—it meant so much to me, you know, that someone would The longer a “patient–doctor” relationship has been estab- take the time. (P1A3) lished, the more relaxed interactions are likely to be. In this scenario, the consumer is in a position of greater power than Tailored Care the patient in the hospital bed and is therefore more likely to establish their presence. In a doctor’s surgery, the consumer Tailoring care to meet individual consumer needs is a pro- influences, to some degree, when an encounter will occur as cess—“a consultative thing” (P4A13)—in which consumers they have usually initiated the appointment. The extent to and experts listen to each other and act. Access to experts which consumers maintain control of an encounter depends they know and trust also influences consumers’ receiving tai- on how the situation unfolds and how each actor responds to lored care. Consumers feel valued within the expert–con- the other. sumer relationship when experts listen and act: 8 SAGE Open All I said to the first doctor was that I have a lot of difficulty with than triage. So, I finally said to her, when she stopped talking to everyone being around me when I don’t have any control. I’d no the IT person—I said, “I’m 57 years old, I’ve had chest pain for sooner said it than sort of extraneous people were moved away. 16 hours, and my pulse is so erratic I can’t count it.” So she So, he heard every word that I said, and put the appropriate finally looked up and said, “Just a minute,” and came rushing amount of action. (P8A27) around and got a wheelchair. By the time my friend parked the car, you know, and got in, I was already in the resuscitation room and they had lines put in, and they already had defibrillated the Tailoring care to meet consumers’ emotional needs is also first time by the time he came in. So, that’s how serious it was. important. An excerpt from a consumer interview provides Like, my pulse was hitting 250. So—so now I know to tell insight into ways in which consumers and experts collabo- people. (P8A41) rate to ensure that consumers receive tailored care that meets their emotional needs. This consumer has a chronic life- Access to experts when consumers need it and to experts threatening illness. Together, he and his general practitioner that consumers know and trust contributes to consumers have constructed a scenario that they will play out when the receiving tailored care. Prompt access to experts is often lim- consumer reaches a point where he wants to “give up” ited to consumers whose condition requires immediate atten- (A27r105): tion or who are in the final stages of life: We have a code now. So I told him, “Well, when I get to the Because of my condition, [the doctor is] very accessible. If I point—to that stage again, I’ll just tell you that I’m ready for a have any concerns at all, I can ring him. Usually, obviously, he’s short trip to Switzerland.” He says, “Is there anything that I can not the one that answers the phone, and I tell the nurse or the do to help that I’m not doing?” I said, “Yes. When I come in and receptionist, whichever one answers the phone [ . . . ] and he I look really bad—no matter what—I want you to tell me how usually calls back within one to two hours at the most. (P4A13) well I’m doing. I promise you that I’m going to pretend that I believe you.” (A27r107) Another consumer, who was caring for a family member who was in the final stages of life, explained in her digital When consumers feel that experts do not listen and there- story how “the specialist had given me all of his contact fore do not tailor their care, consumers’ needs are either not numbers and I’m allowed to ring 24/7 if needed” (P16A52). met or are not met in a timely manner. One consumer’s digi- Access to experts is not always so readily available for tal story includes an image of males in “slave gangs” fol- other consumers. During consumers’ open discussions in the lowed by an image of the Australian Indigenous flag. The digital storytelling workshop, two participants, who are both images are accompanied by the consumer’s voice over that mothers of adult children with mental illness, explained how refers to experts “not listening because they don’t have to” they were excluded from participating in any aspect of their (P13A49). The symbolism of the images links the consum- children’s care. It was unclear, from the conversation, what er’s cultural identity to concepts of oppression and exclu- the mothers’ legal status was in relation to accessing infor- sion, which are expressed in the consumer’s spoken words. mation or being involved in their children’s care. Nonetheless, Consumers also revealed that sometimes experts hear and both mothers expressed concern for their children and were listen but do not act. During open discussions in the digital upset and angry that “the system took them [their adult chil- storytelling workshop, one consumer related to the group dren] away” (P17A56). how experts on a hospital ward listened to him “crying, turn- These consumers have no way of knowing whether their ing and screaming in pain” (P15A56) without acting. children are receiving tailored care and they are excluded The process of tailoring care also requires consumers to from contributing in any way to their child’s care. One of the listen to and to act on experts’ advice. One consumer related mothers described how she had asked for and needed help a story of how when he was on holidays interstate, he needed from experts when her son was admitted to the hospital psy- to present to the ED of a public hospital. On arrival at the ED chiatric unit. “Nobody ever phoned me, nobody ever “the triage nurse was on the phone and the computer at the returned my calls” (P17A56). For this consumer, accessing same time and said ‘Just take a seat, I’ll be with you in a few an expert who had “passion, professionalism [and] intelli- minutes’” (P8A41). The consumer then recalled previous gence” was important and akin to “finding a friend” advice given to him upon discharge from a hospital in his (P17A56). The other mother explained that experts had told home city. The discharge doctor had advised, her, “we can control our patients better without the family around” (P17A56). The next time you get sick, if you’re not here when that happens, Accessing experts close to their home and in settings you need to emphatically tell them how unwell you are, because familiar to consumers supports tailored care. Sometimes you never look it. consumers have to travel from regional or remote areas to capital cities or larger regional hospitals to receive care. So those words came back to me when I was in Melbourne, and Being away from family and support networks is isolating. so I didn’t go and sit down. I just stood there for a few moments, Consumers prefer the familiarity of smaller regional hospital and she [the triage nurse] was trying to get a bloody application to work on her computer, and that’s what was more important facilities, which they believe foster more personalized care: Chamberlain-Salaun et al. 9 I can remember going into the ED one day and just walked key processes: contact with or immersion in an unfamiliar through the door—and that’s all I did, was just walk through the culture and loss of familiar social roles, cues, and practices door—and the girl behind the counter said, “Hi [consumer’s (Irwin, 2007; Oberg, 1960). The environment of health care name], come on straight through.” It made it all bearable, for a is a microculture consisting of physical objects, ideas, start. It made me confident that I wasn’t just a number, I was beliefs, and institutional processes, which are unfamiliar to being treated as a person. It made me glad that I was being consumers (Edwards Lenkeit, 2014). In addition, technical treated in [ . . . a regional town], and not in a capital city where terminology is used, which may be difficult for consumers to possibly I may have been just a number. Yes, as I said earlier, it understand (Zeng-Treitler et al., 2008). When people unex- made a really bad situation feel a lot better. (P4A13) pectedly enter this microculture, they leave behind their expectations of everyday life and take on a consumer role Discussion (Plummer, 2012). Unexpectedly entering the social world of health care is Regardless of whether a consumer’s unexpected entrance is akin to “taking a first trip to a foreign country” (Ramsden, the result of an accident, a diagnosis, or being a carer of 1980, p. 289). The difference being that a person taking a someone who has experienced either, consumers experience first trip to a foreign country is better prepared for their expe- all stages of the grounded theory Outsiders in the experts’ rience than a person making an unexpected entrance into the world. Although consumers generally move sequentially social world of health care. A trip to a foreign country is usu- through the stages of the grounded theory, the stages may ally planned; departure and return dates are chosen; some overlap or be revisited. For example, a consumer who has knowledge of the language, norms, and culture of the coun- received a diagnosis may experience each stage of the pro- try are acquired and travelers will have an idea of what their cess only to find themself catapulted back to an earlier stage budget will allow in relation to accommodation and other and assigned a new diagnosis. A new diagnosis has the effect expenses. Consumers do not have the luxury of preparing for of an unexpected reentrance and may occur at any stage of their entrance into the social world of health care but instead the process. A consumer’s previous experience gives them make an unexpected entrance into a new social world where some familiarity with the process of being an outsider in the they need to learn a new role. expert’s world but it does not change their outsider status. Classifying individuals into social groups is a process of The grounded theory Outsiders in the experts’ world social categorization (Abrams & Hogg, 1990) in which indi- explains the process that people experience when they unex- viduals not only categorize others but also consider whether pectedly enter the social world of health care and become others belong to their own “in-group, or to some other, out- health consumers. The theory emphasizes the outsider status group” (Ward et al., 2001, p. 9). In the seminal work The of consumers in a context in which health professionals Social System, Parsons (1951) states that categorizing people maintain their status as experts. The status of consumers as as “being sick” is a social condition because it involves peo- outsiders contradicts the central role that they are given in ple entering into the socially constructed “sick” role. models of consumer-, patient-, and/or person-centered care. Consumers, however, do not collectively form a subculture Key findings from this study relate to the culture shock that around the role because the undesirable state of being sick is people experience when they unexpectedly enter the social not a motivating factor for joining this group (Parsons, 1951). world of health care and the social categorization of roles Since Parson’s (1951) work, the number of people with within that world that result in them having to learn a new diagnosed illness has increased and the concept of consumer role and establish a presence to receive tailored care. support groups has developed. The experience of being socially categorized as being sick is not, therefore, necessar- Culture Shock ily as isolating as Parson infers. Some consumers in the study, particularly parents of children with disabilities, culti- Consumers experience cognitive responses to the shock of a vate support by seeking out and connecting with consumers diagnosis (Anderson et al., 2010) and the shock of suddenly experiencing similar situations. Findings in the literature being subjected to an unfamiliar culture (Edwards Lenkeit, show that joining a support group enables consumers to iden- 2014). Within the socially constructed world of health care, tify with others through shared experiences (Doran & people who willingly assume the role of experts provide care Hornibrook, 2013; Thompson et al., 2014) and diminishes to those who unwillingly assume the role of consumers. thier initial feelings of culture shock. Interacting with others Being a health consumer is not a role that people voluntarily and/or being a member of a support group creates a sense of choose. A diagnosis or recurrent symptoms engender a real- belonging that alleviates these consumers’ feelings of isola- ity that thrusts people into the role. tion and “normalizes” their situation. This form of normal- Anthropologists use the term culture shock to describe ization helps consumers to establish a presence in the social feelings of disorientation, frustration, and helplessness that world of health care and in turn confront the dichotomy of people encounter when they are subjected to an unfamiliar “us” and “them” that exists between consumers and experts. culture (Edwards Lenkeit, 2014). Culture shock involves two 10 SAGE Open It is widely recognized that the relationship between con- here, changing perceptions of self attest to consumers view- sumers and experts is important for individuals’ health and ing their physical body differently after an unexpected the course of illness (Murtagh, 2009; Tsai et al., 2015). The entrance into the social world of health care. Some consum- relationship, however, is complex. Consumers are essentially ers are more circumspect, however, and their perceptions of nonvoluntary participants in a relationship in which consum- their physical self do not match the ways in which others ers struggle to define and learn their role. Although consum- perceive them. ers may not define their role in terms of a collective consumer Although the onset of illness can change consumers’ per- group, the consumer role is “universal” because the institu- ceptions of their body, this does not necessarily mean a loss tional and social expectations and obligations placed on con- of self (Mozo-Dutton et al., 2012). Rather elements of one’s sumers are applied to all consumers regardless of former self can still be preserved and even enhanced through demographics such as age, gender, occupation, ethnicity, or the experience of illness. This process is beautifully described status in other spheres (Morgan, 1982; Parsons, 1951). This in Ken Plummer’s (2012) account of his own illness in which notion of universal expectations leads to consumers exerting he explains that although his body became a “thin body,” a their presence through strategies that include choosing a par- “tired body,” an “encephalopathic body,” a “transformed ticular voice and establishing relationships with experts that body,” and a “new body,” he remained an “interactionist aca- have the potential to transcend professional boundaries in a demic self.” Plummer’s preservation of self enabled him to crisis, or at the end of life. reflect on, give meaning to, and write about his experience of Unlike the consumer role, the expert’s role is “collectiv- illness. ity-oriented not self-oriented” (Parsons, 1951, p. 434). Regardless of social categorizations associated with roles Collectively, experts form a culture that comprises subcul- and illness, and changing perceptions of self, the quality of tures of experts from individual professions (e.g., medicine, relations—at the interaction level—between consumers and nursing, psychology). Membership into these groups is a experts is central to the delivery of health care. The delivery selective process, and education, professional qualifica- of health care is an interpersonal process (Soklaridis et al., tions, and social categorization legitimize roles. Experts 2016). Until the early 1970s, the traditional paternalistic learn, develop, and maintain their professional identities model of health care dominated the “doctor–patient” rela- through formal education, experience in their role and con- tionship in Western health care systems. Within this model, sumers’ expectations of their role (Biddle, 1986; Broderick, the relationship is characterized by a dominant doctor inter- 1998; Haslam, 2014). Experts are proficient in separating acting with a passive patient (Kaba & Sooriakumaran, 2007; their professional and personal identities. Consumers, on the Pilnick & Dingwall, 2011). Doctors act as consumer guard- contrary, do not have the luxury of separating their identi- ians and use their skills to determine the patient’s condition ties. The manifestation of illness in the physical body is not and to prescribe tests and treatments that they consider best separate to consumers’ other social identities; body and self for the patient, who passively consents (Ha & Longnecker, are inextricably entwined. As consumers confront the 2010). While some emergency situations may still justify the dichotomy of “us” and “them,” they learn how to manage use of this model, health care models have since evolved to the collective professional boundaries traditional to the incorporate other health professionals and the role of con- social world of health care. Managing these professional sumers as active participants in their health (Janamian et al., boundaries does not automatically result in consumers hav- 2016; Kaba & Sooriakumaran, 2007). Under evolved models ing license to transgress; however, they can learn how to of care, a range of experts, including nurses, psychologists, push the boundaries to the point of receiving a level of tai- and allied health professionals, are now instrumental in lored care that meets their needs. delivering health care (Bury, 2004) and the traditional pater- nalistic doctor–patient relationship has, in theory, transi- tioned to a partnering relationship, which is patient-, person-, Social Categorization of Roles consumer-, or relationship-centered (Duggan & Thompson, When illness becomes the foundation for socially categoriz- 2011; Soklaridis et al., 2016). However, while findings in ing consumers, individuals’ perceptions of self cognitively this study evidence these changes, the findings also highlight shift (Charles et al., 1997; Mozo-Dutton et al., 2012). A cog- that achieving access to tailored care is not an easy process nitive shift means accepting and integrating illness into one’s for consumers to engage in nor is it without challenges. life and “liv[ing] illness fully” (Frank, 2002, p. 3). Consumers Current health policy attempts to bridge dichotomies in this study demonstrate living illness fully as evidenced by between consumer outsiders and expert insiders by introduc- their responses to emotional fluctuations and changing per- ing strategies and models of care that seek to place consum- ceptions of self during the unexpected entrance phase of the ers and their families at the center of care and to empower consumer experience. In a study of the impact of multiple and support them to participate in their own health and health sclerosis on perceptions of self, Mozo-Dutton et al. (2012) care (ACSQHC, 2011a; Mastro et al., 2014). Risk reduction found that the onset of illness changed study participants’ is a key impetus for introducing such policies. Reducing the perceptions of their body. Similarly, in the study reported risk of adverse events and increasing consumer safety within Chamberlain-Salaun et al. 11 the context of health care is a win-win for both consumers sectors and is transferable to other contexts in which con- and experts and the health systems within which they inter- sumers unexpectedly enter experts’ social worlds, for exam- act. However, while a risk reduction approach is necessary, ple, the justice system or the welfare system. The scope of approaches are largely policy driven and generally fail to this study does not provide the opportunity to extend the consider what consumers really need and want from experts. theory over and above the substantive area of the social Dichotomies fundamentally result from contradictory sets world of health care. The applicability of a formal grounded of underlying assumptions. Health systems are based on risk theory to broader environments has not, therefore, been management and economic assumptions that favor transac- substantiated. tional not relational interactions. Risk management strate- No serious flaws limited the study. It is noted, however, gies include evidence-based practices that are underpinned that data were collected from consumers and experts in one by positivist scientific knowledge, which favor a biomedical Australian regional city only. Also, information obtained approach to interactions between experts and consumers. In from demographic questionnaires was incomplete. Five contrast, consumer-centered approaches are based on bio- consumers and three experts did not complete demographic psychosocial perspectives that combine ethical values, con- questionnaires. These participants were observed interact- sumers’ preferences, psychotherapeutic theories, and ing with experts and consumers, respectively, and were negotiation theories (Bensing, 2000; Jensen et al., 2013). given a study information sheet and provided consent prior Economic imperatives to achieve more with less impose to observation sessions being conducted. The lack of demo- structures that reward experts and health service providers graphic data relating to these participants did not affect the for quantity of interactions over quality of interactions. quality of the grounded theory but would have provided Although the importance of the quality of interactions additional information relating to variation in the total between consumers and experts is recognized, it is often sample. measured through quantitative means. It is not all doom and gloom; however, there is a shift Conclusion afoot. Current trends in research suggest that the human The grounded theory Outsiders in the experts’ world explains qualitative aspect of health is gaining momentum, particu- the process of interaction between consumers and experts larly at the consumer–expert interaction level (The Beryl across the continuum from consumers’ unexpected entrance Institute, 2019; Brach, 2014; Johna & Rahman, 2011) and into the social world of health care to receiving tailored care that consumers are participating in their health care (Chamberlain-Salaun, 2015). As outsiders, consumers have (Entwistle, 2009; Rocque et al., 2019; Röing & Holmström, to navigate and negotiate their way in the social world of 2012). However, progress toward empowered individuals health care to access required information and receive care who are in control of their health and health care is slow that is tailored to their needs. Within this social world, con- (Foot et al., 2014) and care that is truly consumer-centered is sumers and experts act and interact in health care discourses currently the exception not the rule (Brach, 2014). Bridging and make meaning of their experiences. dichotomies that exist between outsiders and insiders means Consumer-centered health care has strong policy support. acknowledging consumers’ and experts’ differing perspec- Yet, the findings from this study establish that for partici- tives, knowledge, skills, needs, and desires in the process of pants, consumer-centered care is the exception not the norm. improving consumers’ experience of health care. Understanding consumers’ needs and their perceptions and meaning making of interactions with experts is valuable. The Study Strengths and Limitations theory contributes to understandings and knowledge of what it means to be a consumer of health care—not a consumer A key strength of this study is the sample size and the varia- who is categorized according to their illness or condition, or tion and scope of the data set. Data were collected and gener- by the setting in which they receive care or according to the ated from 32 participants representing 23 consumers and specific health professionals with whom they interact. nine experts. The scope of the data set includes data collected Gaining insight into the substantive area of inquiry enables and generated via a range of methods. Data generation/col- improved efficiencies in the delivery and quality of health lection method and quantity of data by participant type are care. Importantly, gaining insight into consumers’ experi- presented in Table 1. In addition, the lead author’s commit- ence of interacting with experts also provides a foundation ment to the essential grounded theory method of memo writ- for considering relationships and ways of interacting between ing resulted in a “bank” of 120 memos. Having access to that consumers and experts that acknowledges and respects each quantity of decision-making records and thought patterns other’s humanness. over the course of the study supported the development of the grounded theory. Declaration of Conflicting Interests Another key strength of this study is the potential trans- ferability of the findings. The grounded theory Outsiders in The author(s) declared no potential conflicts of interest with respect the experts’ world is theoretically applicable across all health to the research, authorship, and/or publication of this article. 12 SAGE Open Funding design: From Corbin and Strauss’ assumptions to action. 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SAGE OpenSAGE

Published: Jan 29, 2020

Keywords: grounded theory; consumer-centered care; health care; health professionals; symbolic interactionism

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