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ravenscroft ef (2010) Journal of Nursing and Healthcare of Chronic Illness2, 215–224 Navigating the health care system: insights from consumers with multi-morbidity
Aim. This study explored the perspective of people with multi-morbidity on navigating the health care system in Ontario, Canada.
Background. Delivering health care to people with one or more chronic conditions presents a major challenge and opportunity for health care today. System redesign is informed by information from many sources including a vast body of knowledge about chronic illness. However, there is limited understanding of how patients with multi-morbidity experience navigating the health care system.
Design and method. An interpretive descriptive design was used to explore how patients with multi-morbidity experience navigating the health care system. Data were collected through minimally-structured interviews and a demographic questionnaire with 20 adult participants with chronic kidney disease, and co-existing diagnoses of diabetes mellitus, and cardiovascular disease, review of the participants’ health records, and secondary contextual data collection.
Findings. Two main themes emerged through iterative, constant comparative analysis: navigating rough terrain and discovering how to manage the health care system. The findings of this study highlight the disjuncture and misalignments in the health care delivery system and the cumulative health care-related burden of multiple chronic conditions for consumers.
Conclusion. The perspective of patients with multi-morbidity on navigating the health care system provides valuable insights into how the health care system may be redesigned to maintain and improve quality of care.
Relevance to clinical practice. It is increasingly important for nurses to recognise and understand the impact of how health care is delivered on the access to and continuity of care for patients with chronic conditions and the work required from such patients.
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Despite a wealth of theoretical and empirical scholarship exploring the patient experience of chronic illness (Thorne & Paterson 2000), there is little empirical work that examines how patients perceive interacting with their health care environment. Qualitative research is one mechanism through which the collective perspective of a particular group of health care consumers, such as people dealing with multi-morbidity, can be expressed. The research presented here examined health care system navigation from the perspective of patients living with multi-morbidity – defined as two or more co-existing chronic conditions (van den Akker et al. 1996). The findings from this study bring an important health care consumer voice to the current health care discourse. The research reported here focused on three chronic conditions that are illustrative of complex, chronic conditions that often co-exist, affect people from across the lifespan, and require multiple and varied contacts with the health care system: chronic kidney disease (CKD), cardiovascular disease (CVD), and diabetes mellitus (DM). The research adds a valuable consumer perspective to the limited body of knowledge about health care system navigation.
Delivering efficient and effective health care to the growing numbers of people living with chronic conditions, and increasingly these are people with multi-morbidity, is both a major challenge and opportunity for health care delivery systems. The current health care climate of fiscal and workforce constraints, an aging population, and rising incidence and prevalence of chronic conditions has refocused efforts to renew health care systems to make them both more effective and sustainable. However, any changes to the existing health care delivery system have enormous potential for error and vulnerable groups of patients, such as those with chronic conditions, are at particular risk. Accordingly, there is a wide-spread sense that the health care consumer perspective ought to be part of the discussion about what should happen; however, including this consumer perspective within that larger dialogue is not straight-forward.
With advances in biomedical science and technology since the middle of the 20th century, what were once considered acute and/or life-threatening or terminal conditions, like tuberculosis and AIDS, are now viewed as chronic. Accordingly, organizations like the World Health Organization (WHO) have revised their definition of a chronic condition to ‘health problems that require ongoing management over a period of years or decades … [and] typically affect the social, psychological, and economic dimensions of a person’s life’ (World Health Organization. 2005). More inclusive definitions and improved surveillance, have led to an increasing awareness of the significant scope of the problem posed by chronic conditions.
The full scope of the problem of chronic conditions is difficult to assess because, as authors like Fortin et al. (2005) note, there is a lack of standard measurement criteria, especially as regards the conditions to be included and definition of those conditions. However, the World Health Organization. (2005) estimates that 60% of all deaths internationally, and 80% of deaths in low to middle income countries, are caused by four major chronic conditions, namely cardiovascular diseases, diabetes, cancers, and respiratory diseases. In low to middle income countries over half of all these deaths occur in individuals under 70 years of age.
Nonetheless, studies in the United States and Canada by authors like Wolff et al. (2002), Broemeling et al. (2005), and Schneider et al. (2009) suggest that in high income countries there is an increased prevalence of chronic conditions in the elderly and that co-morbidity is associated with greater risk of mortality, poorer functional status and greater use of health care services, and health care expenditure. Increasing understanding of risk factors for chronic conditions and associated complications is also raising awareness of the potential for primary and secondary disease prevention and health promotion. Growing appreciation of the potential scope of the problem presented by chronic conditions has spawned a number of initiatives by government and consumer groups, such as the Center for Chronic Disease Prevention and Control established by the Public Health Agency of Health Canada and Partnership to Fight Chronic Disease in the United States.
Traditionally Western health care systems have focused on medicine and physicians, disease/body systems rather than people, and diagnosis and treatment of acute medical problems leading to disjointed care for individual patients, particularly those with chronic conditions. There is increasing attention given to health care delivery strategies that may prevent primary and/or secondary disease; reduce morbidity and mortality, and reduce costs associated with chronic conditions. Health care renewal efforts in Canada and elsewhere include regional devolution of responsibility for health care delivery; implementation of strategies intended to integrate care delivery across the continuum, including primary health care development; and adoption of chronic disease management models. The Chronic Care Model (CCM) developed by Wagner and colleagues at the MacColl Institute in Seattle has received particular attention, widespread implementation, study, and refinement (World Health Organization, 2002, Barr et al. 2003). A common feature of many chronic disease management and program management strategies is a focus on single, high-profile conditions like chronic obstructive pulmonary disease or diabetes.
There is a substantial body of knowledge about patient experience of chronic conditions, epidemiology, treatment, and so on. Again much of this knowledge derives from research with patients with single chronic conditions. Comparatively, little is understood about the patient experience of the health care system in the context of one or more chronic conditions, despite early work by authors highlighting the significance of health care context for the patient experience (Anderson & Bury 1988, Corbin & Strauss 1988, Thorne 1993a,b). Likewise, little is understood about how 2 or more major chronic conditions intersect and interact and how these affect patient navigation of the health care system. Two studies specifically exploring health care system navigation in the context of multi-morbidity in Australia and the United Kingdom suggest that multiple chronic conditions add complexity and that health care system navigation is work for the patient that may be assisted or hindered by factors like communication, availability of resources, and information (Preston et al. 1999, Rasmussen et al. 2001).
In this study the researcher sought to (1) identify the factors that, from the perspective of patients with multiple chronic conditions, enable or hinder access to care; (2) describe the phenomenon of navigating the health care system from the patient perspective; and to (3) interpret the findings within the larger context of health care delivery in Canada. The researcher’s intent was to develop a coherent description of the experience of navigating the health care system from the perspective of patients dealing with multi-morbidity and present provisional truth claims that clinicians and policy-makers may be able to apply. With these goals in mind three key questions were asked:
What happens to patients dealing with multi-morbidity in navigating the health care system?
What perceptions exist among patients dealing with multi-morbidity about what ought to happen?
What core principles can be identified from consumer perspectives for consideration in health care system redesign?
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The researcher chose to use a qualitative descriptive approach, taking specific direction from interpretive description (Thorne et al. 1997, 2004). Interpretive description, a guiding rather than prescriptive approach to inquiry, provided a sound philosophic logic from which to make design decisions that recognised multiple, subjective, constructed realities, reciprocal interaction and influence of researcher and researched, and an emergent or grounded orientation to conceptual thinking. The researcher was also guided by principles of naturalistic inquiry (Lincoln & Guba 1985, Sandelowski 1995, Patton 2002); accordingly, this research was naturalistic to the extent that it occurred in the participants’ environment, the data collection process was minimally structured, no attempt was made to manipulate the phenomenon, and the design was emergent because the researcher was responsive to the iterative process of data collection and analysis.
Ethics approval was obtained from the four relevant agencies. Free and informed consent procedures were followed and an alternate procedure was identified for potential participants who were unable to read the consent form because of literacy or visual problems. Appropriate steps were taken to ensure privacy and confidentiality including using code numbers rather than participant names, securing all data, and presenting the findings in such a way as to minimise the identification of any participant.
The researcher came to this research sensitised to the possibility of finding certain themes or patterns in the participants’ descriptions of their experiences. The researcher was alert for the possibility that the sensitising framework might bias the research process and was, for example, mindful of remaining open to the unexpected in the data. It is important to the researcher that the findings be credible, that is, sound, just and well-founded (Whittemore et al. 2001). To this end the researcher used the criteria of credibility, fittingness, auditability, and confirmability to remain mindful of threats to the rigor of the research (Lincoln & Guba 1985). For example, the researcher explored the ‘fit’ of emerging themes with successive participants and in second interviews with previously interviewed participants, and discussed the emerging findings with health care professionals with expertise in chronic disease, including clinicians and the researcher’s doctoral committee.
Recruitment and sample
Although CKD was not an explicit focus of this research, people with DM and CVD (including hypertension) are at particular risk of developing CKD and CKD is associated with poor cardiovascular and other outcomes (Levin 2003, McCullough 2003).The researcher chose Stage 1 to 4 CKD as the index condition. The researcher anticipated that patients with kidney failure (stage 5 CKD) would be less able to participate due to dialysis-related side-effects and limitations (e.g. time required for dialysis treatment), and that more frequent interactions with the health care system for dialysis or follow-up would make the health care navigation experience of patients with kidney failure substantially different from patients with stages 1 to 4 CKD.
Three CKD clinics at three academic health care organizations were selected as recruitment sites offering good access to potential participants meeting the recruitment criteria: (1) adults (19 years or older) with diagnosed stage 1 to 4 CKD, (2) attending a clinic for management of their CKD, (3) co-existing DM and/or CVD, or both, and (4) capable of communicating in English, although not necessarily literate in English.
The selection procedure required staff within the clinics to distribute information letters for one week to patients meeting the selection criteria. Whenever possible the researcher was on site to answer questions from staff and potential participants. Many of the participants took advantage of this to make contact with the researcher when they received the letter and provide contact details for a follow-up call. A few participants called the researcher at a later date to volunteer.
Initial purposeful sampling allowed the selection of participants who were likely to be good informants about the phenomenon being studied. As the study progressed theoretical sampling was used; that is, sampling was guided by observations of potential themes and patterns in the emerging findings. The final sample was 20 participants comprising almost equal numbers of men and woman with a majority over 65-years old, married (or widowed), Caucasian, English-speaking, retired, urban, and educated at or beyond secondary level (see Table 1). All but one of the participants had 3 or more chronic conditions (see Table 2). The majority of the participants had Stages 3 or 4 CKD.
Table 1. Participant demographic characteristics (N = 20)
| || ||n||%|
|Home language||English exclusively||16||80|
|English and other||4||20|
|Place of residence||Rural||3||15|
|Level of education||University||7||35|
|< High school||4||20|
Table 2. Participant multi-morbidity data (N = 20)
|CKD, CVD, DM and other reported chronic conditions||13||65|
|CKD, CVD, DM and no other reported chronic conditions||3||15|
|CKD, CVD and other reported chronic conditions||1||5|
|CKD, CVD and no other reported chronic conditions||1||5|
|CKD, DM and other reported chronic conditions||2||10|
The study participants were the primary source of data for the study and each participant was interviewed at least once. Data were collected using minimally structured interviews lasting 45 minutes to 2 hours with each participant. Open guiding questions were asked as needed (see Table 3). The researcher audio taped each interview using a digital audio recorder and transcribed the interview recordings verbatim. At the time of the interviews the researcher also collected demographic information to provide additional context for the interviews and to provide a sense of the participants as a group.
Table 3. Interview guide
|• Opening prompt:|
| Please tell me about your experience of the health care system.|
|• Interview prompts:|
| Tell me about your experiences of health care providers.|
| Tell me about your experiences of support staff, for example, receptionists, in the health care system.|
| Tell me about your experiences of the how different parts of the health care system are connected.|
| What do you think works in the health care system?|
| How do you think the health care system can be improved?|
| What do you think is most important about your experience?|
| Is there anything else you would like to share with me about your experience?|
|• Closing prompts:|
| Do you have any comments about this interview?|
| You may think of something you would like to add to what you have told me today. May I call you next week to see if you want to add to this interview?|
| If I have some issues that need more explanation later in the study, may I call you?|
| Please call me if you think of anything you would like to add to what you have told me today, or have any concerns or questions.|
The researcher sought and collected collateral data from several secondary sources; sources included health record review to provide additional understanding for the participant’s health care system experience, consultation with expert clinicians, and review of clinic and organizational documents.
The qualitative data analysis was consistent with the guidelines proposed for interpretive description (Thorne et al. 2004). The transcribed data were analysed by the researcher using inductive, constant comparative techniques to seek understanding of the data, find and integrate meanings in the data, theorise about relationships in the data, and interpret the findings. The data collection and analysis were iterative and concurrent. Data analysis began with the first interview and the interviewer moved back and forth between data collection and analysis. The researcher took care to be as inclusive of the data as possible and not leap to premature conclusions about the emerging findings. The researcher was stimulated by new data that seemed incongruent with interpretations of data collected earlier in the study to challenge the inductive thinking about the data and explore alternative interpretations.
Data collection decisions were informed by the emerging themes, patterns and tentative interpretations of the data to enable substantiation, challenge, or refutation of emerging findings. For instance, the researcher was guided to seek participants who were receiving care from providers located within a single organization and participants receiving care from providers in multiple locations. The researcher stopped interviewing new participants when the emerging findings were judged to be coherent and reflective of the larger population when considered against the researcher’s sensitizing framework provided by the existing body of knowledge and personal and clinical background. The researcher continually questioned the data, challenged preliminary interpretations, and entertained alternative ways of conceptualising the data until the researcher was confident that the conceptualization effectively represented all relevant shared aspects of the participants’ experience within a logical and coherent account.
The findings from this study add significant new knowledge to what is currently understood about the health care navigation experience of patients with multi-morbidity. These findings suggest new ways of looking at the health care system, how it works, and what this means for patients dealing with multiple, chronic conditions. The health care consumer voice captured in these findings provides a distinct and valuable alternative perspective on the issues being discussed in regards to health care delivery. In particular, these findings add new information about what patients do in managing their health care and what knowledge they require to do this successfully.
The research context
The study participants shared considerable information about the general health care milieu within which the study took place. Many of the themes within their accounts, for example, issues related to continuity of care and patient information management, reflected those reported by other researchers. As such this information did not represent new findings. However, understanding the health care system through the eyes of this group of patients with multi-morbidity provides a necessary backdrop to appreciate the findings about how these participants perceived navigating their health care situations.
Participants identified a number of aspects of their health care milieu that affected the continuity of their care. In particular they spoke about the fragmented and disjointed nature of health care delivery and how this presented challenges to navigating their health care environment to obtain care. For instance, the location of health care services across multiple, discrete health care locations usually with discrete health care records for the patient, even when these health care services were located in a single organization. The participants’ described how lack of access to adequate patient information led to inappropriate treatment, duplicate investigations, and so on. The challenges posed by fragmentation were compounded by difficulties encountered in relation to health care providers, for example, finding a physician and impediments to constructive interactions, such as inadequate time; problems related to what and how information is shared with patients, for example, contradictory information from providers for different chronic conditions; and everyday logistical issues related to appointment management, parking and transport, time needed for appointments and so on.
The participants’ accounts spoke to how the frustrations associated with seemingly small obstacles within the health care system can become magnified for patients dealing with multi-morbidity. The chronic nature of their conditions means they encounter these challenges repeatedly over time and the frustrations are further exacerbated when challenges are encountered for multiple conditions. Many participants described how these challenges complicated already complicated lives, and how it was often difficult to find solutions for these apparently minor problems. Thus, what those working in the health care system may perceive as molehills may be experienced as mountains by patients dealing with multi-morbidity.
It was within the problematic health care milieu they depicted that the study participants had to navigate to obtain the care they needed. The rich and detailed data collected in this study provide a window, from the perspective of a group of patients with multi-morbidity, into how they were managing to obtain the care they need, because of their very active and strategic efforts to make the system work for them.
Discovering the health care system
The participants’ accounts depicted a process of ongoing discovery about the complex social structures within which their health care was delivered. They learned what they needed to know through their experiential observations, analysis of their observations, and developing theories about how it worked.
As the participants learned about the complex social structures within which their health care was delivered they discovered that the system comprised different parts that did not work or connect in ways they had assumed. One man remarked:
I know that the last time I was in to see my heart doctor, he hadn’t been told anything, or got any sort of a report, and then it was strictly cursory. He couldn’t tell any of the tests they’d done. None of those tests were available to him. Just we’ve seen your patient and we’ve done this, that, and the other thing to him. And that was a month after I was released from the hospital.
The participants learned that providers were difficult to differentiate by profession or position and varied in competence, knowledge, and proficiency, saying things like, ‘Someone walks in with a needle, and... thank God, looks at your wrist bracelet, and starts to do something to you. You don’t know if it’s the cleaning lady or the head of surgery’ and ‘In most hospitals, you’ve got your IV nurses, and man, they know what they’re doing, but the average floor nurse, she’s either good at it, or she isn’t good at it.’
Patients also discovered that their interaction with different parts of the system was regulated. For instance, one man noted ‘A lot of doctors... won’t answer your questions on the phone. They want you to make an appointment.’ One woman described how she discovered the largely unspoken expectations for how patients should interact with and access the health care system, [I] just figured out that that’s the system. ‘Cause there is a system’ and another said ‘you can get things done more efficiently if you sort of follow the rules.’
Many participants found that providers had particular preferences for how things should be done. For instance, some physicians preferred patients to use a certain laboratory or come to the physician’s office for laboratory work, were unwilling to accept new patients with complex co-existing chronic conditions, or preferred to ‘refer people to certain doctors’.
Chance and trial and error played a large part in what and how these patients learned about the health care context they encountered. For example, one woman recalled:
But I gather it’s a clinic, which I didn’t know when I first started going there. That it’s not just a doctor’s appointment that you go to. I didn’t realise it was a clinic. Yeah, it was probably my second or third visit in; I suddenly realised it’s a clinic!
Through their experiences with the health care system most participants discovered that what they considered to be reasonable expectations of health care services were often unrealistic, and that they could not rely on the health care system to be there for them. Their accounts portrayed a common overwhelming sense of concern that how the health care system was set up required a great deal of luck to negotiate successfully. However, all participants described eventually learning what they needed to know in order to bridge the gaps in the system.
Managing the health care system
The participants’ accounts depicted how as they learned about their health care context they found ways to manage their situation. The participants’ accounts spoke to how many aspects of these patients’ health care experiences were outside of their control. For example, one participant commented, ‘So it meant that twice this month I’ve got to have blood work, because they don’t use the same lab. Because he’s [endocrinologist] at [hospital A], they’re [CKD clinic] at [hospital B].’
However, the participants’ accounts portrayed how where they could, these patients responded strategically to what they encountered. They described how they made conscious decisions, taking into consideration their lives as a whole, about what, if anything, they would do to manage the system to increase the likelihood of having their needs met. As one woman described it:
You have to learn what works for you.... You have to have your wits about you. ‘Cause it is, you sort of have to have a little strategy. Sort of going through it, it’s tough. And you have to know how they operate.
These patients with multi-morbidity described engaging in substantial work beyond day-to-day self-management of their condition(s) to influence their access to care, the continuity of their care, and the quality and safety of their care. For example, they described keeping watch over their care by monitoring what was happening, double-checking, and tracking their care across providers. Naturally they also worried about times they may not be able to do this. As one man fretted, ‘If you’re lying there unconscious I don’t know how you can do that.’
These patients with multi-morbidity talked about how they actively advocated for themselves by asking questions, voicing opinions or concerns, and sometimes directing their providers. In the words of one woman, ‘Now I don’t take a back seat. The minute I don’t like what’s happening, I speak up.’
In addition, they were strategic about their approach to interpersonal relationships, and strategically used their relationships with others to improve their care and access to care, services, and/or providers. One man described this saying:
I’m very strong on the point that your GP [General Practitioner] has got to be your main person. He’s got to be your arms and your legs. In other words, everything should go through your GP. ‘I would like it if you sent the reports back to my GP to let him know what’s happening with me.’…. I’m like that. I want the GP to be my control room.… I need him – he can handle all these doctors.
Participants also recognised help that worked for them, worked to build and maintain relationships with trusted providers, and seized opportunities to end unsatisfactory relationships. For instance, one woman said:
I had a cardiologist here … and I did not like his way – his manner – and I just thought, ‘Why should I have to put up with that?’ and then sometimes people feel you have to be satisfied with that because you have no choice. But …. he [GP] sent me for an angiogram and I liked the doctor who did it, and I asked him, ‘Are you taking patients?’ and he said, ‘Yes.’ So I switched.
The participants described tactically working around or improving health care situations by using their knowledge to improve care coordination, ‘it’s not what you know, it’s who you know’; minimise logistical frustrations (like waiting) and circumvent rules regulating access to providers, ‘you need connections to get through. It shouldn’t have to be, but that’s the way it is’; take advantage of loopholes, like asking to be on the cancellation list when waiting for an investigation; and improve provider access to their medical history:
I almost always take that list with me…. It usually raises an eyebrow or so when they see it, and that’s why I carry it. Because what I’ve seen is, if you’re sitting there fairly drowsy, they realise that there’s a lot more going on with this guy sitting here in front of me than perhaps meets the eye. That’s my experience anyway.
The health care consumers who participated in this study provided a fascinating glimpse into the work required of patients dealing with multi-morbidity to learn about the health care context in which they have to seek and receive care and the significant impact that the many small strategies and tactics they learn to deploy can have on their lives.
Despite the best efforts of the researcher and CKD clinic nurses there were no participants under 45 years of age, and the majority of the participants were 65 years of age or older (76%) and not working (80%). The research was also limited by the exclusion of (1) family members or caregivers, (2) patients whose health conditions impair their ability to communicate (e.g., patients with conditions like Alzheimer’s or other forms of dementia, or speech impediments, for instance, due to a stroke), and (3) patients who were not able to express themselves in English. The complexity of the phenomenon being investigated also makes this research vulnerable to some less self-evident limitations: (1) the changing nature of the phenomenon, (2) the complexity of the phenomenon, and (3) the importance of considering the phenomenon in context.
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The findings from this study draw attention to the challenges faced by patients with multi-morbidity in dealing with the health care system and the many demands of managing their health care. The participants’ accounts provided a window into how they as consumers with multi-morbidity developed deliberate ways of dealing with the health care system and identified reasoned courses of action to take in dealing with their health care delivery environment. The study findings add an important health care consumer voice to the ongoing discussions about health care delivery for people with chronic conditions, and particularly those with multi-morbidity.
Many of the findings related to the participants’ perspective on the larger health care milieu corresponded closely to what may have been predicted from the extant literature. The correspondence of these findings was particularly evident with regard to issues related to discontinuity of care (Thorne 1993a,b, Ravenscroft 1999, 2005, Loeb et al. 2003, Williams 2004, Noel et al. 2005), inadequate support for self-management (Bayliss et al. 2003, Lorig & Holman 2003, Williams 2004, Noel et al. 2005), and frustrating logistical issues (Preston et al. 1999, Rasmussen et al. 2001, Blendon et al. 2003). These findings also support suppositions by other researchers about the possible magnifying effect of multiple chronic conditions (Thorne 1993a,b, Bayliss et al. 2003, Williams 2004, Noel et al. 2005). These findings support the importance of taking the environment in which patients seek and receive care into consideration when examining the health care related work required of patients (Anderson & Bury 1988, Corbin & Strauss 1988, Price 1989, Thorne 1993a,b, Montemuro et al. 1994, Gregory et al. 1998, Polaschek 2003).
The study findings suggest that for these patients involvement in and partnership in their care, key assumptions underlying the notion of patient-centered care, was hampered by the way in which health care is currently delivered (Bayliss et al. 2003; Epping-Jordan, Pruitt, Bengoa, & Wagner, 2004; Thorne & Paterson 2000). For instance, health care systems and providers tend to focus on condition(s) in relative isolation of one another; it seems the health care system is not designed with the needs of patients with multi-morbidity in mind. This focus on single chronic conditions may limit insight into the cumulative workload and the health care needs of patients with multiple chronic conditions. The study findings suggesting that for the group of patients who participated in this study participating in their care was the result of their active efforts, rather than a result of systems that supported patient-centered care, lends support to the pursuit of strategies to support patient-centered care.
These findings provide support for publications, like Navigating Canada’s Health Care: A User Guide to Getting the Care You Need, aimed at informing and supporting health care consumers to be more involved in their health care (Decter & Grosso 2006). However, the findings also highlight a number of potentially problematic issues as regards promoting consumer engagement in the existing health care environment. One, the findings from the current study illustrate the potential for conflict when an engaged consumer encounters a health care culture that may espouse consumer engagement and patient-centered care, but only under limited conditions. For example, questions or concerns about self-management may be acceptable, whereas questioning the competency, knowledge, or actions of a provider may not. Two, the current thinking about consumer engagement runs counter to the long-standing dominant health care culture in which patients were encouraged not to ask questions, health care institutions were safe-havens, and health care providers were considered to be the ‘experts’. The current study findings, particularly as regards ‘being vigilant’ and ‘speaking up’ illustrate these patients’ awareness of what questions may be acceptable and their caution in raising issues that may bring the competency, knowledge or actions of a provider into question. The current study findings illustrate how difficult it may be for patients to alter their perceptions of their health care environment and expectations of their health care providers, and how this may engender a lack of confidence in the system. These findings suggest prudence in how we approach promoting consumer engagement.
There appears to be a growing agreement across the health care discourse that the patient role in health care should be expanded. This idea seems to rest on the assumption that it is reasonable to assist health care consumers to accommodate the existing health care system. This assumption likely rests on another assumption, namely that it is difficult, perhaps even impossible, to make the necessary accommodations in the health care system to better meet the needs of the health care consumer. Given the current findings it would seem prudent to revisit the notion of expanding the health care consumer role, the underlying assumptions for this idea, and the potential impact on patients whom these current findings suggest are already burdened by health care-related work.
Relevance to clinical practice and policy
The in-depth participant descriptions of the experience of navigating the health care system to obtain care for multiple chronic conditions offer many useful understandings of the consumer perspective. These understandings may be helpful to the clinical practice community in sensitizing it to the particular challenges facing this patient population. However, these findings, derived from the systematic analysis and thoughtful interpretation of the participants’ accounts, have value beyond adding to the body of experiential knowledge about what it is like to live with multiple chronic conditions in our society.
These study findings make an important and explicit contribution to our understanding of the challenging health care context within which key health care renewal policy decisions are being made; systems are being planned, implemented, and monitored; and empirical knowledge is being brought to bear to solve complex and difficult system-related problems. The consumer voice captured in this study challenges the status quo in health care delivery for people with chronic conditions, especially for those with multiple conditions, and provides valuable support for ongoing health care renewal to better address the needs of this vulnerable population.
The study findings draw attention to the need to recognise the full scope of the health care-related work that patients with multi-morbidity do. The patients who participated in this study described living with, seeking, and obtaining appropriate care for multiple chronic conditions as very challenging work. A subtle shift is needed to ensure health care renewal addresses the needs of consumers with multi-morbidity rather than expecting patients to bridge gaps in health care delivery. There may also be a gap between the public enthusiasm for consumer engagement in health care and the capacity of the health care system to make that feasible. Health care providers may need to consider how their expectations for patients to be involved in their health care fit with the realities of the health care system and the individual patient’s willingness and ability to take on the health care-related work expected of them within the context of their lives.
Lastly, this study draws attention to how the prevailing focus on discrete condition and increasing specialisation in health care delivery, education, and professional practice is inherently problematic for patients with multi-morbidity and may negatively affect access to appropriate care and the overall quality of life of these consumers. Moreover, while many clinicians have access to communities of practice that support their continuing development in relation to distinct diseases, there are very few opportunities for this kind of support as regards dealing with co-morbid conditions. Consequently patients with multi-morbidity describe encountering increased complexity related to their health care, because (1) they have to make sense of and reconcile the support and education they receive from each isolated provider in order to self-manage their multiple chronic conditions, and (2) the insight of health care providers into the accumulated expertise, concerns, and work of these patients may be limited. Such insights gained from this study call attention to the relevance of some of the changes that are starting to occur in the broader health care context including the development and implementation of education programs fostering interdisciplinary collaboration, new health care roles (e.g. nurse practitioners), and a shift in how the roles of patients and providers are understood.
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In designing the study the researcher was mindful of the notion that the phenomenon being studied is not static; the complexity of the phenomenon, including the chronic conditions that the consumer(s) are living with and the health care system at all levels; and the need to be aware of taking into account the context when interpreting the consumer perspective. Therefore, the findings reflect the researcher’s interpretation of the perspectives expressed by the study participants rather than any ‘truth’ about health care system navigation for people dealing with multi-morbidity.
This research captured the perspective of members of an increasingly important population of health care consumers – those with multi-morbidity. The patient perspective elicited during this research may differ from the perspective of other stakeholders and health care decision-makers and should be interpreted with caution. Nonetheless, the insights into the health care system gained from the perspective of this group of health care consumers provide much to ponder with regard to how ongoing changes to health care delivery may be targeted to better address the specific issues of this especially vulnerable group of health care consumers.