“Because everything changes that day;you don't do the routine”: Alterations and activities chronically ill women undertake on days with health care provider appointments

Introduction

Patients schedule appointments with health care providers for any number of reasons. Some are initiated in pursuit of a diagnosis, others for annual check-ups, and others to update ongoing treatment regimens. Among larger benefits, such as the establishment of continuity of care, ¹ a number of specific outcomes can result from provider–patient interactions, including: referrals to specialists, ² prescriptions for pharmaceuticals, ³ and the identification of strategies aimed at maintaining or achieving a healthful lifestyle. ⁴ For some patients, even more is to be gained from the provider–patient interaction. For example, for people managing chronic illnesses, these interactions “become a critical intersection for information exchange, decision-making and motivation” (p. 299, emphasis added) ⁵ due to the common need to deal with the life-long/consistent visible, invisible, stable, and/or fluctuating symptoms that are a hallmark of those diseases, disorders, and syndromes that are chronic in nature. ⁶ Further, chronically ill patients wishing to receive income assistance or to access other programs must often seek support from their health care providers in order to be successful in their applications, ⁷ and providers can also provide, “through power and knowledge, legitimacy for the way the person is feeling and the body is operating” (p. 1319), ⁸ all of which may happen during appointments.

Much chronic illness research in the social and health sciences focused on health services has been related to provider–patient interactions.^9–12 This is an important aspect of investigation for the reasons noted above, and studies in this area have yielded many key insights into how these interactions do, can, and should play out. For example, from such research we know that during interactions chronically ill patients want to: be viewed as honest and trustworthy in what they are reporting regardless of whether or not they look sick; receive information that will assist them with understanding their illness; be given desired referrals and permissions for social programs; and be diagnosed and treated.^13–16 Yet, given the significance of these interactions for chronically ill patients' everyday lives, we know surprisingly little about how visits to providers' offices and interactions within them are prepared for on appointment days. Such knowledge is important for many reasons, including that the identification of activities and actions leading up to appointments allows for the possibility of creating targeted interventions that may assist with their successful negotiation or completion, such as visit preparation interventions. ¹⁷

Fibromyalgia syndrome (FMS) is a chronic illness that occurs most frequently in women and is characterized by lasting bodily pain and fatigue that can be extremely disabling. ¹⁸ There is no known cause of or cure for FMS, which renders this illness and similar others as difficult to diagnose and treat. There is also some controversy surrounding FMS in that some contend it is psychosomatic, rather than biophysical, in origin and thus argue that it should be treated as such. ¹⁹ This paper draws on the findings of 55 interviews conducted with women with FMS to examine the activities and alterations they undertook leading up to appointments with health care providers, with a particular focus on when and where they happened and the impact of this for everyday lives. In doing so it builds upon Werner and Malterud's (p. 1412) ²⁰ finding that chronically ill “women patients…invested much work, time, and energy before or during the encounters in order to be perceived as a credible patient.” The present analysis identifies and unpacks the full scope of those alterations and activities that received this time and energy on appointment days in leading up to the women's interactions with providers. It also draws on the findings of Radley et al. ²¹ and Crooks ²² that demonstrate: (1) there are practices played out in the appointment space with origins that extend beyond the particular interaction, and (2) the information shared during appointments is brought from somewhere into the interaction. Such a focus is intended to put the interaction “into context.” This focus also allows for consideration of if and how a focus on activities and alterations leading up to the appointment and their nature necessitates a reimagining of the boundaries of the provider–patient interaction, whereby the standard spatial boundary is the provider's office and temporal boundary is the appointment timeslot.

Methods

The purpose of this exploratory qualitative study was to document and explain the process of negotiating life after developing FMS, with particular attention paid to navigating the health care system. Women with FMS living in one of three cities in the province of Ontario, Canada were sought out to participate. Each city has different types of local health services available—one with much variety (Hamilton), one with some choice (Sudbury), and one with no specialist care on-site (North Bay)—which is why they were selected. The goal was to conduct 50–60 face-to-face interviews across the cities one at a time throughout August 2003 to January 2004. Using initial contacts given by The Arthritis Society offices, FMS support group leaders in the communities were contacted and asked to assist with recruitment, all of whom responded positively to the request. Other potential participants were further identified using snowball sampling.

Interviews were conducted by a single investigator after first receiving approval from McMaster University's research ethics board. Semi-structured interviews took place at locations chosen by the participants and lasted anywhere from 1 to 2 h. At the start of the interview each woman was informed of her rights as a participant, including the rights to refuse to answer a question and to withdraw from the project at any time. Every woman who booked an interview agreed to participate and no participants withdrew from the study after completing the interview. To maintain anonymity, pseudonyms chosen by the participants are used in the findings.

Questions asked of participants were semi-structured using a guide organized under six subheadings: (1) background information; (2) experiences within spaces of health care; (3) experiences outside spaces of health care; (4) everyday life; (5) identity; and (6) demographics. The questions were developed following a detailed review of the qualitative literature on FMS, the health geography literature on chronic illness, and also studies examining patients' experiences of contested chronic illnesses. Because of the semi-structured nature of the interviews participants were able to share insights not central to the questions posed in the guide. In all, over 70 h of recorded interviews were compiled.

Interview data were transcribed verbatim upon completion of data collection. Transcripts were then entered into NVivo 2, which is a qualitative data management program. A coding scheme consisting of ten free and 152 tree nodes (organized by 12 parent categories) was devised to organize the dataset. This scheme was created in three main stages: (1) preliminary development based primarily on the interview guide; (2) revision of the preliminary scheme after transcript review; and (3) ongoing refinement and elimination of redundant nodes. To enhance consistency a single investigator conducted coding following the receipt of feedback on the scheme from another researcher familiar with the study and its purpose. The constant comparative technique was employed in data analysis. While this technique is often used in studies guided by the grounded theory methodology to compare new data to those already gathered, it has been shown to have useful applications in other qualitative contexts. ²³ This analysis follows Boeije ²³ contention that comparisons can also usefully be made at different scales in complete datasets including within a transcript, between interviews in the same group or node, between nodes, and even between projects using this analytic technique. The primary form of comparison used here was at the ‘between nodes’ level, and particularly between conceptual and experiential nodes through focusing on trying to understand why frequently occurring overlaps between specific coding nodes were occurring.

The coded data were used to inform five analyses: (1) the current analysis; (2) an exploration of the impact of illness on the women's daily life spaces; ²⁴ (3) an examination of the ways in which the women did and did not understand themselves to be disabled and in which spaces their identities as disabled were strongest; ⁷ (4) an understanding women's use of information gathered online to understand their illness and how they approached discussing treatment with their doctors; ²² and (5) a characterization of ways in which women's lives in the home space changed as a result of their changing bodies. ²⁵ These analyses were undertaken separately. The current analysis unfolded by first identifying the relevant nodes from the coding scheme. Second, data contained within each node were reviewed in detail in order to identify relationships between the nodes. Third, and specifically to enhance rigour, the lead investigator shared a synthesis of the structure of the emerging analysis and relevant coding extracts with two other researchers who were familiar with the study and its purpose to confirm interpretation of the data and reach consensus on the scope and scale of the findings. Fourth, the findings were then compared against findings in the existing literature in order to put the analysis into context and assess the uniqueness of the contribution.

As is often the case with qualitative studies that are exploratory in nature, the specific themes central to the discussion in the remainder of the paper “came out of the analysis” and were not directly probed in the interviews. An outcome of this is that it is not always possible to say with complete certainty how many women employed a particular preparatory activity or altered their routines in a specific way because these issues were most often indirectly brought forth by the participants themselves. In what follows, wherever possible the number of women who talked about a certain experience is identified, but this should be interpreted with caution, as with all quantification of qualitative data, in that it does not mean that only these women actually shared or lived this particular experience.

Results

A total of 55 women with FMS participated in this study. Their ages ranged from 35 to 88, with the average being 58 years. On average they had lived with the symptoms of FMS for 14 years, with the shortest period being less than a year and the longest 54 years. The average length of time since diagnosis was just under nine years (ranging from less than a year to 23 years). The majority were managing multiple chronic illnesses, having at least one other in addition to FMS. To assist with managing their health at the time of the interview, nineteen women reported seeing at least one health care provider, 18 saw two, 14 saw three, three saw four, and one woman indicated seeing none. She was the only one to report not seeing at least a regular family doctor or walk-in-clinic doctor for FMS management. Neurologists, rheumatologists, and (pain) psychiatrists were commonly mentioned secondary care specialists visited by the women. Other providers mentioned were chiropractors, psychologists, massage therapists, homeopaths, acupuncturists, nutritionists, physiotherapists, and nurse practitioners. Such diversity is not surprising given that there is no single course of treatment for FMS and symptoms tend to be exhibited quite differently between individuals. The frequency of visits with providers ranged significantly between the women and across provider groups, with family doctors being visited more commonly than specialists and in some instances allied health professionals being seen most often.

The remainder of this section is focused on the routine alterations and preparatory activities that led up to women's interactions with health care providers on appointment days. The discussion is divided into two major themes that arose from the constant comparative analysis. The first is related to the actions involved making alterations to normal routines on the appointment day routine in order to physically access interacting with health care providers. These alterations involved changes to the time-space structures of everyday life and sequence of places (not) regularly visited. The second theme relates to the activities undertaken by the women in order to prepare for provider–patient interactions on appointment days.

Discussion

The findings reveal that the women engaged in two distinct trajectories of preparation leading up to the provider–patient interaction on appointment days: (1) preparing for the interaction itself, and (2) preparing to get to the provider's office. The first trajectory involved the inclusion of preparatory activities in the women's routines on these days in order to attend the appointment feeling informed and/or with a planned agenda or discussion points, as desired. The second trajectory involved adjusting the typical daily path and routine and employing coping strategies in order to literally accommodate getting to the provider's office so that the interaction could take place, and particularly with enough energy to “be present” (i.e. without feeling overly fatigued). These trajectories are interrelated in that preparatory activities had to be factored into routine alterations, and the routine alterations employed determined how much time and energy was available for preparatory activities. The consistency with which these preparatory activities and routine alterations were reported is noteworthy as the women were not prompted to discuss any of them. Given this consistency, along with the disruptive nature of some alterations and activities and the time consuming nature of others, it is not surprising that references to appointments with health care providers have featured so prominently in chronically ill people's conversations about their everyday lives. ²⁶ Importantly, it can be understood from the findings that having an awareness of both trajectories is central to developing an understanding of the complex ways in which appointments with providers shape chronically ill women's lives leading up to the interaction on appointment days. From theoretical perspective, these trajectories further illustrate how what Corbin and Strauss ²⁷ refer to as “illness work,” in this case preparing for appointments, impacts upon “everyday work,” such as the time available for routine tasks on appointment days. They also highlight the ways in which Goffman's ²⁸ concept of “backstage work” is relevant to framing the lead-up to health care appointments in that most aspects of the preparatory activities and routine alterations shared above will, in fact, but completely invisible to the providers women with FMS see.

Particular elements of the two trajectories discussed above have been considered elsewhere in the literature. Yantzi et al., ²⁹ for example, contend that getting to appointments takes time and energy, particularly when significant distances are to be overcome. ³⁰ Time and energy were found to be central to both the routine alterations and preparatory activities the women undertook. The articulation of the specific alterations and activities that make up chronically ill women's lives on appointment days in the current analysis adds needed detail to Yantzi et al.'s ²⁹ contention and also to Werner and Malterud's (p. 1412) ²⁰ observation, noted earlier, that time and energy are needed “before or during the encounters” in order to appear as credible patients. The findings also give a clearer sense of where energy was expelled leading up to the provider–patient interaction and how it was used over time. Preparatory activities primarily happened in the private space of the women's homes, but also involved other spaces such as cyberspace (via the Internet) and face-to-face support groups held in the community. Routine alterations centred on the home as well, and also involved places visited on the way to and from appointments and the literal travel from one place to another involved in getting to the provider's office. From a more temporal perspective, routine alterations were common on the appointment day itself and sometimes extended to the day before and after as well, while preparatory activities did not have an overly precise beginning and end point as they were frequently ongoing, though they intensified on the appointment day (e.g. compiling information over time and synthesizing it just prior to the appointment). Given how spread across time and space the routine alterations and preparatory activities were, it is not surprising that energy management such as avoiding fatigue and symptom exacerbation featured so prominently in the women's discussions of their lives leading up to interactions with doctors on appointment days.

Explanations for why the identified preparatory activities and routine alterations were undertaken are multifaceted and range from the micro-scale of each woman's bodily experience (e.g. to minimize exacerbating symptoms) and the desire to come across as an informed patient, to the macro-scale of the organization of the system of health service delivery and the increasing time demands placed on providers that result in limited time being allotted to the interaction. Such a finding affirms the importance of engaging with thinking about the body and bodily experiences in health research, ³¹ and also resonates with Radley et al.'s ²¹ finding that the larger “organization of practices” shapes the use of time in the interaction space. Other characteristics, such as having access to material resources (e.g. transportation, income), also played a role in explaining the alterations and activities identified. Thus, women's social and geographic locations had an impact on those routine alterations and preparatory activities they drew upon and also contribute to understanding why they were undertaken. For example, not all health services are available in every Canadian community, ³² and as such one's geographic location plays a role in determining whether or not care will be available locally and the subsequent routine alterations needed in order to accommodate getting to the doctor's office. In keeping with this same example, one's social location—for example, how factors such as gender, ability, education, and race intersect to shape access to material resources ³³ —will determine whether or not there is access to enough money to cover the cost of out-of-town travel. In sum, bodily experiences, facets of the health care system, and social and geographic location collectively contribute to determining why, and also how, chronically ill women engage in routine alterations and preparatory activities as part of their lead-up to provider–patient interactions on appointment days.

The findings demonstrate that the provider–patient interaction does not start or end in the provider's office but is, rather, an event that is part of a larger process primarily focused on its successful negotiation. This study has revealed two trajectories, one focused on preparation and the other on getting to the interaction, involved in this process as engaged in by chronically ill women managing FMS. The identification of such trajectories resonates with Massey's ³⁴ argument that places are the locations where multiple, and sometimes dissimilar, trajectories intersect. More specifically, the women's experiences show that interactions between providers and patients on appointment days are the meeting point of trajectories of preparation and routine alterations that occur through time (e.g. before, during, and after appointments) and across space (e.g. at home, in the community, in transit, in the doctor's office) rather than discrete aspatial, atemporal occurrences. These trajectories not only put the interaction into context through illustrating the “behind the scenes” from the patient's perspective, but the interaction also, conversely, serves as important context for the specific activities and actions engaged in as part of the trajectories, and particularly in understanding why they take place. It is not surprising that the interaction serves as context for the trajectories, and vice versa, given that they are linked through the larger process that has as its focus the successful negotiation of the provider–patient interaction.