ORIGINAL ARTICLE doi: 10.1111/j.1752-9824.2010.01063.

Navigating the health care system: insights from consumers with multi-
morbidity
Eleanor F Ravenscroft RN, CNeph(C), MSN, PhD
Assistant Professor, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada and Patient
Care Manager, Renal Unit, Sunnybrook Health Sciences Centre, Toronto, ON, Canada

Submitted for publication: 30 January 2010

Accepted for publication: 17 June 2010

Correspondence: R A V E N S C R O F T E F ( 2 0 1 0 ) Journal of Nursing and Healthcare of Chronic Illness

Eleanor F Ravenscroft 2, 215–224
488 Hillsdale Avenue East Navigating the health care system: insights from consumers with multi-morbidity
Toronto, ON
Aim. This study explored the perspective of people with multi-morbidity on navi-
Canada
gating the health care system in Ontario, Canada.
M4S 1V2
Telephone: + 647 430 9998 Background. Delivering health care to people with one or more chronic conditions
E-mail: eleanor.ravenscroft@utoronto.ca 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 ques-
tionnaire with 20 adult participants with chronic kidney disease, and co-existing
diagnoses of diabetes mellitus, and cardiovascular disease, review of the partici-
pants’ 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 mul-
tiple 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.

Key words: chronic illness, health care system, interpretive description, navigation,
qualitative

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EF Ravenscroft
Introduction
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), cardio-
vascular disease (CVD), and diabetes mellitus (DM). The
research adds a valuable consumer perspective to the
limited body of knowledge about health care system
navigation.
Background
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 refo-
cused 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 discus-
sion 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. Accord-
ingly, organizations like the World Health Organization
(WHO) have revised their definition of a chronic condition to
216
‘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 defini-
tions 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 condi-
tions, 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 condi-
tions 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 condi-
tions 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 con-
sumer 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 increas-
ing 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
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Original article
Model (CCM) developed by Wagner and colleagues at the
MacColl Institute in Seattle has received particular atten-
tion, 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 dis-
ease 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. Com-
paratively, 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 highlight-
ing 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, avail-
ability of resources, and information (Preston et al. 1999,
Rasmussen et al. 2001).
Aim
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:
1 What happens to patients dealing with multi-morbidity in
navigating the health care system?
2 What perceptions exist among patients dealing with
multi-morbidity about what ought to happen?
3 What core principles can be identified from consumer
perspectives for consideration in health care system re-
design?
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Navigating the health care system
Method
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, recipro-
cal 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.
Ethical considerations
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.
Rigor
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 partic-
ipants 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.
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EF Ravenscroft

Recruitment and sample Table 1 Participant demographic characteristics (N = 20)

Although CKD was not an explicit focus of this research, n %

people with DM and CVD (including hypertension) are at Gender Male 9 45
particular risk of developing CKD and CKD is associated Female 11 55
with poor cardiovascular and other outcomes (Levin 2003, Age >74 years 6 30
McCullough 2003).The researcher chose Stage 1 to 4 CKD as 65–74 years 9 45
45–64 years 5 25
the index condition. The researcher anticipated that patients
Race/Ethnicity Caucasian 18 90
with kidney failure (stage 5 CKD) would be less able to Black 2 10
participate due to dialysis-related side-effects and limitations Home language English exclusively 16 80
(e.g. time required for dialysis treatment), and that more English and other 4 20
frequent interactions with the health care system for dialysis Place of residence Rural 3 15
City 17 85
or follow-up would make the health care navigation expe-
Level of education University 7 35
rience of patients with kidney failure substantially different College 5 25
from patients with stages 1 to 4 CKD. High school 4 20
Three CKD clinics at three academic health care organi- < High school 4 20
zations were selected as recruitment sites offering good access Employment status Employed 4 20
to potential participants meeting the recruitment criteria: (1) Retired 14 70
Unemployed 2 10
adults (19 years or older) with diagnosed stage 1 to 4 CKD,
Marital status Married 11 55
(2) attending a clinic for management of their CKD, (3) co- Widowed 6 30
existing DM and/or CVD, or both, and (4) capable of Single 3 15
communicating in English, although not necessarily literate in
English. Table 2 Participant multi-morbidity data (N = 20)
The selection procedure required staff within the clinics to
n %
distribute information letters for one week to patients
meeting the selection criteria. Whenever possible the CKD, CVD, DM and other reported chronic conditions 13 65
CKD, CVD, DM and no other reported chronic conditions 3 15
researcher was on site to answer questions from staff and
CKD, CVD and other reported chronic conditions 1 5
potential participants. Many of the participants took advan-
CKD, CVD and no other reported chronic conditions 1 5
tage of this to make contact with the researcher when they CKD, DM and other reported chronic conditions 2 10
received the letter and provide contact details for a follow-up
CKD, chronic kidney disease; CVD, cardiovascular disease; DM,
call. A few participants called the researcher at a later date to
diabetes mellitus.
volunteer.
Initial purposeful sampling allowed the selection of par- lasting 45 minutes to 2 hours with each participant. Open
ticipants who were likely to be good informants about the guiding questions were asked as needed (see Table 3). The
phenomenon being studied. As the study progressed theoret- researcher audio taped each interview using a digital audio
ical sampling was used; that is, sampling was guided by recorder and transcribed the interview recordings verbatim. At
observations of potential themes and patterns in the emerging the time of the interviews the researcher also collected
findings. The final sample was 20 participants comprising demographic information to provide additional context for
almost equal numbers of men and woman with a majority the interviews and to provide a sense of the participants as a
over 65-years old, married (or widowed), Caucasian, English- group.
speaking, retired, urban, and educated at or beyond second- The researcher sought and collected collateral data from
ary level (see Table 1). All but one of the participants had several secondary sources; sources included health record
3 or more chronic conditions (see Table 2). The majority of review to provide additional understanding for the partici-
the participants had Stages 3 or 4 CKD. pant’s health care system experience, consultation with expert
clinicians, and review of clinic and organizational documents.

Data collection
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
Data analysis
The qualitative data analysis was consistent with the guide-
lines proposed for interpretive description (Thorne et al.

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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.
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 sensitiz-
ing 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 concep-
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Navigating the health care system
tualising 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.
Findings
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 inves-
tigations, 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
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EF Ravenscroft
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 compli-
cated 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 compe-
tence, knowledge, and proficiency, saying things like, ‘Some-
one 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
220
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].’
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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 rela-
tionships 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.
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Navigating the health care system
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.
Limitations
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.
Discussion
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
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EF Ravenscroft
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’ perspec-
tive 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 evi-
dent 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 involve-
ment 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
222
consumer engagement and patient-centered care, but only
under limited conditions. For example, questions or concerns
about self-management may be acceptable, whereas ques-
tioning the competency, knowledge, or actions of a provider
may not. Two, the current thinking about consumer engage-
ment 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 engage-
ment.
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. How-
ever, 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
 2010 Blackwell Publishing Ltd
Original article
decisions are being made; systems are being planned, imple-
mented, 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 chal-
lenges the status quo in health care delivery for people with
chronic conditions, especially for those with multiple condi-
tions, 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 encoun-
tering 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.
 2010 Blackwell Publishing Ltd
Navigating the health care system
Conclusion
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.
Acknowledgements
The author wishes to acknowledge the support and guidance
of her doctoral supervisory committee – Dr S Thorne, Dr H
Beanlands, Dr C Jillings, Dr A Levin, and Dr S Wong
References
van den Akker M, Buntinx F & Knottnerus A (1996) Comorbidity or
multimorbidity: what’s in a name? A review of literature. Euro-
pean Journal of General Practice 2, 65–70.
Anderson R & Bury M (Eds.) (1988) Living with chronic illness:
The experiences of patients and their families. Unwin Hyman,
London.
Barr VJ, Robinson S, Marin-Link B, Underhill L, Dotts A, Ravensdale
D et al. (2003) The expanded Chronic Care Model: an integration
of concepts and strategies from population health promotion and
the Chronic Care Model. Hospital Quarterly 7, 73–82.
Bayliss EA, Steiner JF, Fernald DH, Crane LA & Main DS (2003)
Descriptions of barriers to self-care by persons with comorbid
chronic diseases. Annals of Family Medicine 1, 15–21.
Blendon RJ, Schoen C, DesRoches C, Osborn R & Zapert K (2003)
Common concerns amid diverse systems: health care experiences in
five countries. Health Affairs 22, 106–121.
Broemeling A-M, Watson D & Black C (2005) Chronic Conditions
and Co-Morbidity among Residents of British Columbia. Center
for Health Services and Policy Research, Vancouver, British
Columbia, Canada.
223
EF Ravenscroft
Corbin JM & Strauss AL (1988) Unending Work and Care: Man-
aging Chronic Illness at Home. Jossey-Bass Inc, San Fransisco, CA.
Decter M & Grosso F (2006) Navigating Canada’s Health Care: A
User Guide to Getting the Care You Need. Penguin, Toronto,
Ontario, Canada.
Gregory DM, Way CY, Hutchinson TA, Barret BJ & Parfrey PS
(1998) Patients’ perceptions of their experiences with ESRD and
hemodialysis treatments. Qualitative Health Research 8, 764–783.
Levin A (2003) Clinical epidemiology of cardiovascular disease in
chronic kidney disease prior to dialysis. Seminars in Dialysis 16,
101–105.
Lincoln YS & Guba EG (1985) Naturalistic Inquiry. Sage Publica-
tions, Beverly Hills, CA.
Loeb SJ, Penrod J, Falkenstern S, Gueldner SH & Poon LW (2003)
Supporting older adults living with multiple chronic conditions.
Western Journal of Nursing Research 25, 8–23. discussion 23–29.
Lorig KR & Holman H (2003) Self-management education: history,
definition, outcomes, and mechanisms. Annals of Behavioral
Medicine 26, 1–7.
McCullough PA (2003) Why is chronic kidney disease the ‘‘spoiler’’
for cardiovascular outcomes? Journal of The American College of
Cardiology 41, 725–728.
Montemuro M, Mohide EA, Martin LS, Beecroft ML, Jakobson S,
Porterfield P et al. (1994) Participatory control in chronic hospital-
based hemodialysis patients. ANNA Journal 21, 429–439.
Noel PH, Frueh BC, Larme AC & Pugh JA (2005) Collaborative care
needs and preferences of primary care patients with multimorbid-
ity. Health Expectations 8 54–63.
Patton MQ (2002) Qualitative Research and Evaluation Methods,
3rd edn. Sage Publications, Thousand Oaks, CA.
Polaschek N (2003) Living on dialysis: concerns of clients in a renal
setting. Journal of Advanced Nursing 41, 44–52.
Preston C, Cheater F, Baker R & Hearnshaw H (1999) Left in limbo:
patients’ views on care across the primary/secondary interface.
Quality in Health Care 8, 16–21.
Price MJ (1989) Qualitative analysis of the patient-provider interac-
tions: the patient’s perspective. The Diabetes Educator 15, 144–148.
Rasmussen B, Wellard S & Nankervis A (2001) Consumer issues in
navigating health care services for type I diabetes. Journal of
Clinical Nursing 10, 628–634.
Ravenscroft EF (1999). An interpretive description of the experience
of end stage renal disease as perceived by persons with diabetes
224
mellitus. master’s thesis, University of British Columbia, Vancou-
ver, Canada.
Ravenscroft EF (2005) Diabetes and kidney failure: how individuals
with diabetes experience kidney failure. Nephrology Nursing
Journal 32, 502–509.
Sandelowski M (1995) Sample size in qualitative research. Research
in Nursing and Health 18, 179–183.
Schneider KM, O’Donnell BE & Dean D (2009) Prevalence of mul-
tiple chronic conditions in the United States’ Medicare population.
Health and Quality of Life Outcomes 7, 82.
Thorne SE (1993a) Negotiating Health Care. Sage Publications, Inc,
Newbury Park, CA.
Thorne SE (1993b) Negotiating Health Care: The Social Context of
Chronic Illness. Sage Publications, Inc, Newbury Park, CA.
Thorne S & Paterson BL (2000) Two decades of insider research:
what we do and don’t know about chronic illness experience.
Annual Review of Nursing Research 18, 3–25.
Thorne S, Reimer-Kirkham S & MacDonald-Emes J (1997) Inter-
pretive description: a non-categorical qualitative alternative for
developing nursing knowledge. Research in Nursing and Health
20, 169–177.
Thorne S, Reimer Kirkham S & O’Flynn-Magee K (2004). The
analytic challenge in interpretive description. International Journal
of Qualitative Methods 3, Article 1. Retrieved from http://
www.ualberta.ca/~iiqm/backissues/3_1/pdf/thorneetal.pdf
Whittemore R, Chase SK & Mandle CL (2001) Validity in qualitative
research. Qualitative Health Research 11, 522–537.
Williams A (2004) Patients with comorbidities: perceptions of acute
care services. Journal of Advanced Nursing 46, 13–22.
Wolff JL, Starfield B & Anderson G (2002) Prevalence, expenditures,
and complications of multiple chronic conditions in the elderly.
Archives of Internal Medicine 162, 2269–2276.
World Health Organization. (2002). Innovative Care for Chronic
Conditions: Building Blocks for Action: Global Report. World
Health Organization, Geneva, Switzerland, pp. 99.
World Health Organization. (2005) Preparing a Health Care
Workforce for the 21st Century: The Challenge of Chronic Con-
ditions. World Health Organization, Geneva, Switzerland.
World Health Organization & Public Health Agency of Canada
(2005) Preventing Chronic Diseases: A Vital Investment. World
Health Organization; Public Health Agency of Canada, Geneva
Ottawa.
 2010 Blackwell Publishing Ltd