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Quality of Life ResearchAn International Journal of Quality ofLife Aspects of Treatment, Care andRehabilitation - Official Journal of theInternational Society of Quality of LifeResearch ISSN 0962-9343 Qual Life ResDOI 10.1007/s11136-014-0846-x
Engaging patients to recover lifeprojectuality: an Italian cross-diseaseframework
Serena Barello & Guendalina Graffigna
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PATIENT ENGAGEMENT SPECIAL SECTION
Engaging patients to recover life projectuality: an Italiancross-disease framework
Serena Barello • Guendalina Graffigna
Accepted: 31 October 2014
� Springer International Publishing Switzerland 2014
Abstract
Purpose Chronic disease is recognized as having a large
impact on patient quality of life (QoL), which can be
defined as an individual’s satisfaction or happiness with
life in domains he or she considers important. Policy
makers and clinicians recognize increasingly that patients
can safeguard their QoL by making healthy lifestyle
choices and being actively engaged in their health care.
However, in the emphasis on promoting patient engage-
ment to enhance patients’ QoL, there is no consensus
regarding the relationship between QOL and patient
engagement, resulting in a lack of shared guidelines among
clinicians on interventions. Furthermore, no studies have
provided an in-depth exploration of the perspective of
patients with chronic conditions who are engaged in their
health care and their requirements to achieve an improved
QoL. Given this theoretical gap, the present study
attempted to explore the patient engagement experience
and its relationship with patient QoL in the context of the
Italian healthcare system and in relation to different
chronic diseases.
Methods In-depth qualitative interviews on a sample of
99 patients with a wide variety of chronic conditions (heart
failure, chronic obstructive pulmonary disease, stroke,
diabetes, and cancer).
Results Patient engagement in health care can be defined
as a context-based and cross-disease process that appears to
enable patients to recover their life projectuality, which had
been impaired by the onset of chronic disease. Successful
patient engagement may also be related to a positive shift
in the ways in which patients perceive self and life and
experience empowerment to realize their life potential, thus
improving quality of life. Patient engagement is a powerful
concept capable of reflecting significant psychosocial
changes that promote patient QoL along the care process.
There appears to be theoretical and empirical justification
for a broad definition of QoL.
Conclusions QoL deeply depends on the patient ability to
engage in their care and on the health expectations they
have. We propose a model of the relation between patient
engagement and patients’ trajectories in critical event
responses and use it to illustrate a new perspective on QoL.
This research showed the heuristic value patient engage-
ment as a is a key concept in the promotion of a patients’
experience-sensitive QoL interventions and assessment
measures.
Keywords Patient engagement � Quality of life � Cultural
issues � Qualitative research � Chronic disease
Introduction
Due to the current demographic forecast and age-related
patterns of chronic diseases, Western health care is com-
mitted to addressing the medical challenge of improving
the quality of a longer life span [1]. Chronic disease is
recognized as having a large impact on patient quality of
life (QoL) [2–6], which can be defined as an individual’s
satisfaction or happiness with life in domains he or she
considers important [7]. QoL affects the course of public
health research as well as the agenda of healthcare policies
[8]. Consequently, policy makers and clinicians recognize
S. Barello (&) � G. Graffigna
Faculty of Psychology, Universita Cattolica del Sacro Cuore,
Largo Gemelli 1, 20123 Milan, Italy
e-mail: [email protected]
G. Graffigna
e-mail: [email protected]
123
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DOI 10.1007/s11136-014-0846-x
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increasingly that patients can safeguard their QoL by
making healthy lifestyle choices. However, even more can
be accomplished through the use of policies and patient
care environments that support active patient engagement
in health care [9–13]. Also, Italian health care and policy
makers recognize the crucial role of engaging patients and
government states this aim in the more recent HHS
guidelines [10]. Patient engagement implies a greater
ability and motivation to solve health-related problems, the
exchange of relevant information with clinicians, shared
decision making, the capacity to cope with complications,
and follow through with treatment [10, 14, 15]. Increased
active patient engagement is associated with better health
behaviors, improved health outcomes, and more efficient
healthcare utilization, all of which are considered crucial
for a patient’s health-related QoL [9]. According to the
theory developed by Graffigna et al. [10, 11], patient
engagement is a dynamic, evolutionary process that fea-
tures four phases (blackout, arousal, adhesion, and eudai-
monic project) that are characterized by complex
experiential dynamics of the patients [12–15].1 This evo-
lutionary view of the patient engagement process suggests
that a fully engaged patient status is the final outcome of a
series of emotional, cognitive, and behavioral reframing of
his or her health condition and that the success of the
patient at each phase of the process depends on the success
of the previous phase. The last phase of the engagement
process culminates in a patient that has gained a positive
approach to health management and has recaptured an
active role in society by re-establishing plans for wellness.
Thus, making patients really engaged in their care means to
sustain them in reaching a status of ‘‘eudaimonic project’’
in which they are able to attribute full meaning to their
healthcare experience, and enact self-management behav-
iors effectively, in due time, even when life contexts
change. In this position, patients also develop a more
mature and psychologically sustainable perspective about
their diseases, which can now be better integrated into their
life projects [16–19].
In this perspective, such a patient engagement model
could be a powerful framework to assess and better address
patient quality of life needs and expectations.
However, in the emphasis on promoting patient engage-
ment to enhance patients’ QoL, there is no consensus
regarding the relationship between QOL and patient engage-
ment, resulting in a lack of shared guidelines among clinicians
on interventions [20, 21]. Furthermore, no studies have pro-
vided an in-depth exploration of the perspective of patients
with chronic conditions who are engaged in their health care
and their requirements to achieve an improved QoL.
Given this theoretical gap, the present study attempted to
explore the patient engagement experience and its relation-
ship with patient QoL in the context of the Italian healthcare
system and in relation to different chronic diseases.
Methods
This is a second-level study that composes a part of a
multi-phase, multi-site cross-sectional research examining
the engagement in health care of patients with chronic
conditions [16–19]. The patients included in this study
were selected to provide a sample with balanced demo-
graphic and clinical conditions (Table 1). Patients were
recruited among hospital ambulatory outpatient on the
basis of the following inclusion criteria: least aged 18 years
and had been treated for at least one of five qualifying
chronic illnesses, including (1) COPD, (2) heart failure, (3)
diabetes, (5) cancer, and (6) stroke. Patients had received
treatment for the qualifying illnesses during at least the
6 months prior to the interview, were fluent in Italian, and
did not have any active psychiatric disorders or cognitive
impairments. Potentially, eligible patients were then tele-
phoned by a clinician from the study sites, to obtain
1 According to the patient engagement model by Graffigna et al. [16,
17], patient engagement is a process featuring four sequential phases.
In the phase of ‘‘blackout’’, patients fall in an initial state of
emotional, behavioral and cognitive blackout determined by the
critical event, which is described as unexpected and out of their
control. In the subsequent phase of ‘‘arousal’’, patients are hyper
attentive to every symptom produced by their body. Symptoms during
this phase are perceived as an ‘‘alarm bell’’ that worries the patient
and may instigate dysregulated emotional responses. The ‘‘adhesion’’
phase arrives when patients have acquired sufficient knowledge and
behavioral skills to effectively adhere to medical prescriptions and
feel sufficiently confident in their own emotional strength to cope
with their condition. Finally, in the ‘‘eudaimonic project’’ phase,
patients have fully accepted their condition and that the patient self is
only one of their possible selves. They are also able to recognize
internal resources that are useful for projecting satisfactory life
trajectories for their future.
Table 1 Sample characteristics
Variable Total sample
N = 99 (100 %)
Demographics
Age (mean) 63.2
Gender (% male) 67
Clinical condition [n (%)]
Diabetes mellitus (type 1 or 2) 29 (29.3)
Heart failure 15 (15.1)
Cancer (breast, lung, colon, or prostate) 22 ( 22.2)
Stroke 19 (19.2)
COPD 14 (14.1)
Mean number of comorbidities 1.2
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permission for a study researcher to schedule a meeting.
According to a qualitative sample strategy, we purposively
selected patients in order to collect a wide range of expe-
riences that could allow us to in-depth understand the
phenomenon under investigation.
Ethical concerns
Before inclusion in the study, the patients were informed
about the aims of the research and associated procedures,
by their reference clinician together with a researcher
responsible for the study. Patients were included in the
study after signing a detailed consent form and were per-
mitted to discontinue from the study if they felt uncom-
fortable at any times during the interviews.
Data collection
In-depth, semi-structured face-to-face interviews were
conducted to explore the patients’ engagement journeys
through their illnesses management and what factors have
fostered/hindered their quality of life. Psychologists trained
in qualitative methods [20, 21] conducted the interviews
using a semi-structured, open-ended guide to elicit exten-
ded narratives (Table 2). The interviews were used to guide
the participants through the following topics: (a) living
with a chronic disease and its impact on patient QoL;
(b) coping with a chronic disease; and (c) the engagement
experience of the patient. Probing questions were used as
necessary to prompt a more detailed response from the
participants [22]. Prior to its use, the interview guide
underwent rigorous evaluation and was refined as neces-
sary throughout the data collection process to ensure it
reflected the emerging themes described by the patients.
In-depth interviews were conducted in a university
office to make patients more comfortable and relatives
were not present. Interviews were collected until no new
additional conceptual information could be compiled. The
length of each interview varied from 45 to 60 min. The
study comprised a total of 99 patients with chronic con-
ditions. No patient who was invited to be involved in the
study refused to participate. The characteristics of the
patients are presented in Table 1.
Data analysis
All of the interviews were audiotaped, transcribed verba-
tim, and imported into Nvivo 10 � QSR International [23]
for data management and coding. Data collection and
analysis were ongoing and were initiated during the tran-
scription process. Memos in the form of written notes were
used to document initial thoughts and ideas that emerged
during interview transcription (performed by the first
author). The first stage in the analysis of the transcripts was
verbatim coding or initial descriptive coding, using words
or phrases provided by the participants. During open cod-
ing, the transcript of each interview was reviewed multiple
times and the data were reduced to codes. The codes were
then organized into categories based on their thematic
similarity. The codes and categories obtained from each
interview were compared to the codes and categories
derived from other interviews to determine common links.
Analyst triangulation [24] was applied to the data analysis
via independent co-coding of interview transcripts by
authors SB and GG. The authors collectively discussed the
analysis and results to settle differences in their interpre-
tation. Procedural rigor and trustworthiness of the study
[25] was ensured by using a clear description of how the
Table 2 Interview guide
Content areas Questions
Living with a chronic disease 1. Please describe the journey of your illness from the time of diagnosis until today
2. If they exist, what are the main features of your illness journey?
3. Overall, how well do you feel and think you are able to manage your chronic condition?
Chronicity and QoL 4. How does your health condition impact your QoL?
5. Has your QoL changed since your diagnosis?
6. What does QoL mean to you at this moment?
Coping with a chronic disease 7. What difficulties do you encounter in managing your disease and what prescriptions are you using?
The health engagement
experience
8. In your own words, please describe what it means to you to be engaged in your care?
9. What factors, in your experience, may facilitate or hinder your involvement in medical decisions and
disease management?
10. What features of your relationship with your physician facilitate your engagement?
11. What role is played by your family/informal network in supporting your more active engagement in your
care?
12. What kinds of support and resources would be most helpful to support your engagement in your care?
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research was conducted and of the methods employed for
participant sampling, data collection, and analysis [26].
The data were collected and analyzed over a 12-month
period spanning from 2013 to 2014.
Results
Coping with a chronic condition: patients’ trajectories
in critical event responses
Chronic conditions and their treatments were described by
patients as having a large impact on their QoL and illness
adjustment strategies. In the patients’ perspective, coping
with a chronic disease, across different clinical conditions,
is a complex process that consists of six sequential expe-
riential phases (Fig. 1).
At diagnosis and/or at other times when the chronic
condition had been perceived as particularly aversive (i.e.,
unexpected symptoms, sudden change in life habits),
patients described an increased awareness of the serious-
ness and permanency of the disease. According to data,
across disease conditions, shock was experienced as the
patients’ immediate reaction to the critical event. As the
patient became conscious of the condition, he or she
experienced feelings of powerless to change the situation
and an adverse response to the new health condition, which
was characterized by thoughts such as ‘‘Why me?’’ and
emotions indicative of distress and denial. However, the
individual chronic population considered in this study
differed from one another relative to the kind of critical
events that were considered stressful.
This feeling was exacerbated by a perceived crisis of the
individual’s established identity, arousing thoughts such as
‘‘I am not the same as before.’’ This sense of identity loss
was frequently associated with feelings of powerlessness
and difficulty in redefining the role of the patient in the
family and in society, which was expressed as difficulties
in having an active role in family functions. The patients
reported experiencing a shattering of self and a need to
reconstruct a meaningful sense of identity in line with the
many changes that had occurred in their lives to recover a
sense of power over the events. Thus, enormous effort was
invested in appearing ‘‘normal’’ despite the conflict this
process invoked. This finding implies the presence of a
tension between the private self and the public identity and
contributes significantly to the burden associated with liv-
ing with a chronic illness.
The results of the present study also showed that the
reactions of patients changed over time both with respect to
their features and emotional intensity. Gradually, patients
acknowledged their diagnosis as something to be dealt with
and lived through.
In addition, the critical event was experienced as caus-
ing acute emotional imbalance and affected the individ-
ual’s ability to tackle everyday activities due to the
experience of losing control over themselves. This loss of
control featured different manifestations depending on the
specific health condition: for instance, stroke or HF resul-
ted in the perception of a loss of control over the body and
its symptoms, whereas diabetic or cancer led to a percep-
tion of a major loss of control over social roles. This
condition also caused patients to experience a reduced
sense of agency, resulting in a lack of self-efficacy over
disease management. Patients described their range of
choices or possibilities as limited by their health condition.
Moreover, they could not attend effectively to other
aspects of their lives because they felt overwhelmed by
their illness. These outcomes result from the progressive
reduction in patients’ life frames, which is related to the
limitations of living with a chronic disease.
The patients described themselves as completely over-
whelmed while reflecting upon the potential impact of their
chronic condition on daily life, and they thought about the
effects of their diagnosis on their future. Consequently,
patients lacked confidence in their futures and became
incapable of making plans both in the short and in the long
term. In conclusion, the chronic condition limited patients’
ability to envision their futures and caused a general loss of
innate human life projectuality. Life projectuality is a key
component of people well-being and it means that they
have meaning and purpose in their lives.
Life projectuality as a driver for patient engagement
and quality of life
Living with a chronic illness is an ongoing, continually
shifting process in which people experience a complex
dialectic between themselves and their healthcare context.
Based on our data, while patients go through their care
experience, they gradually adjust to the burden associated
with living with a chronic illness. They also find means to
maintain their desired identity and to return with renewed
hope and optimism to a perspective of wellness. In our
view, this process might be considered as a pathway to
recover the patient’s lost life projectuality.
This process has also implication for the patient QoL
that seems to assume different meanings at different times
while the process of patient’s adjustment to illness go on.
Along the medical course, individuals change their internal
standards of what constitutes health or other aspects of
quality of life, adjust their values and priorities, and rede-
fine what they think is important to maintain an acceptable
quality of life in the face of declining health.
In light of the patient engagement model described
above, in the early phases of the engagement process,
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patients perceive themselves as an ‘‘ill body.’’ They are
completely absorbed in their illness experience and often
experience difficulty attending to the needs of their life due
to a focus on the management of their disease and its
treatments. As a consequence, for these patients, QoL
mainly means control of side effects and clinical stability
(disease-related QoL).
Suddenly, after having been diagnosed with COPD, I
was ok on the condition that the symptoms were
tolerable enough and the treatments didn’t invade my
life too much, (68-year-old COPD patient)
Just after the diagnosis, when my symptoms were
under control, I felt like my life was also in balance
and it was easier for me to control and feel my body
(63-year-old diabetic patient)
As individuals journey through the engagement process,
they gradually start to perceive themselves as patients, or,
in other words, as individuals with an illness experience.
They also acquire control and confidence toward their
disease condition and their focus shifts from disease con-
trol to health promotion. In line with this shift of per-
spective, a patient’s QoL depends mainly on fulfillment of
the patient’s healthcare needs. The wellness of a patient is
closely associated with the experience of a healthcare
system that is responsive and attuned with the care
expectations of the patient. In this conceptualization, a
positive and trusting relationship with healthcare providers
contributes to the well-being of patients (healthcare-rela-
ted QoL).
When my doctor said: ‘It is a great that you could
control your blood sugar’, I understood that I was an
empowered patient. Because I was living well with
diabetes and could control it and because I was sure
that my healthcare was there when I needed some-
thing. (71-year-old diabetic patient)
Finally, when patients are in the final phases of the
engagement process and start to reconsider themselves as
whole persons despite their disease condition, QoL is
conceived as a renewed ability to make realistic life deci-
sions that are fitting with the impact of the disease on their
life (existence-related QoL).
My disease changed my approach towards life and
caused me to question my goals for living. Before
that time, I was just a lazy person with no clear goal
in my head. But, now I’m very successful because I
have tried to do the best with my time, love myself
much more than before, and as a result, I’m happier
and healthier now. (56-year-old cancer patient)
Patient recovery of life projectuality: needs and levers
within different clinical populations
Although our results showed a shared trajectory of patients’
reactions to their chronic disease, each clinical condition
seemed to pose distinct challenges to patients that could be
due to different clinical subcultures that influenced how
patients coped with their specific health condition and also
how they reacquire their life projectuality in terms of active
role in the society and renewed life plans In the following
paragraphs, an in-depth disease-specific description of
patients’ needs and priorities to sustain their engagement in
health care and QoL will be depicted.
Coping with diabetes: ‘‘feeling free despite an unwelcome
host’’
People with diabetes referred to the communication of their
diagnosis and the prescription of insulin therapy as the
main challenges in their illness journey. The main concerns
of the patients were related to living with a clinical con-
dition perceived as an intrusive and wearing presence,
which caused the patient to feel like a ‘‘slave.’’ This ‘‘loss
of freedom’’ greatly affected the psychological and emo-
tional functioning of the patients: Patients seemed to
change their perception of themselves, thus establishing
their identity mainly in terms of a loss of ‘‘who they were’’
and ‘‘what they were able to do’’ before the diagnosis.
Diabetes involves a deep sense of fragility and vulnera-
bility that is difficult to accept. To recover life projectuality
and sustain patient engagement in the medical course,
individuals must learn to effectively cohabit with their
condition and rebuild their freedom by integrating the
disease into their daily life.
Coping with heart failure: ‘‘is this my body or a new
body’’?
People with heart failure described the heart attack and
unexpected symptoms similar to a ‘‘near-death experience’’
as the main stressor in their illness journey. Within this
framework, the main clinical priority for these patients is to
‘‘put them back on their feet’’ and to restore the ‘‘body
machine.’’ Patients perceived an unfamiliarity with their
body after the heart attack (it is ‘‘the same, although dif-
ferent from before’’). To recover their life projectuality and
active engagement in their health care, patients living with
heart failure need to feel alive again and concomitantly
accept that they are the same person as before albeit in a
different in a way.
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Coping with COPD: ‘‘recovering my space of action’’
People with COPD recognized exacerbations and the pre-
scription of oxygen therapy systems as the main critical
events in their illness. Their main concerns were related to
the need to recover lost physical and social spaces due to
their symptoms and the intrusiveness of the prescribed
treatments. To recover their life projectuality and being
active in managing their care, patients living with COPD
declared a need to ‘‘recover their independence’’ and to
find strategies for managing their daily lives in the context
of the physical constraints and psychological implications
of COPD and its treatments.
Coping with cancer: ‘‘see me again’’
People with cancer described the time of diagnosis dis-
closure and the start of chemotherapy as shocking and
overwhelming. These critical events were amplified by the
visible consequences of the disease and the treatments,
contributing to the social stigma associated with cancer. To
recover their life projectuality and really participate as
active agents in their health care, patients living with
cancer needed to recover their social functions and ‘‘be
seen again’’ by society, which often stigmatizes cancer
patients as people who do not contribute and, thus, are not
actively included in daily life of their social context.
Coping with stoke: ‘‘coming to terms with a body
that has betrayed you’’
People with stroke describe the experience of a body that
had become unpredictable as particularly stressful and
difficult to accept. The bodily experiences during recovery
from stroke were characterized by profound, disturbing,
and, often unintelligible changes that resulted in the
experience of an ‘‘unfamiliar or strange body’’ and
prompted them to ask themselves ‘‘Is something wrong
with me?’’ Based on these findings, patients experienced
their bodies as unreliable and felt that they were ‘‘betrayed
by their body.’’ To sustain patient engagement and foster
them in being able to make renewed life plans, patients
need to be helped to gradually come to terms with their
condition and familiarize themselves with their ‘‘unfamil-
iar body.’’
Discussion
This study provided insights concerning the relationship
between patient engagement and QoL basing on the
experience of a large sample of Italian patients. The central
concern of this paper is the tendency of healthcare research
to regard the QoL as a constant. We contend that patient’s
health experience and the level of engagement in disease
management vary between individuals and within an
individual over time. QoL deeply depends on the patient
ability to engage in their care and on the health expecta-
tions they have [26]. We propose a model of the relation
between patient engagement and patients’ trajectories in
critical event responses and use it to illustrate a new per-
spective on QoL.
According to the current results, patient engagement in
health care can be defined as a cross-disease process that
appears to enable patients to recover their life projectuality,
which had been impaired by the onset of chronic disease.
With the term life projectuality, we refer to the process that
leads patients to a healthy rebalancing to their new cir-
cumstances that allows them to perceive themselves not
only as patients but as persons. The engagement process
featured similar phenomenological patterns of patient
adjustment beyond the associated specific chronic condi-
tion. After the medical diagnosis of chronic illness, patients
are confronted with new situations that challenge their
habitual lifestyle. As a result, they must find new ways to
adjust to their altered condition and gain a renewed life
projectuality.
To achieve psychological adjustment, patients need to
face the reality of being chronically ill and make efforts to
change their lives to adjust to the new circumstances
imposed by their illness. The process of adjustment to a
chronic illness signifies the integration of the burden of
disease management into the broader ‘‘modus vivendi’’ of
the individuals to renew their wellness plans [27]. Thus,
effective engagement in health care suggests a gradual
change in patients’ broader cognitive-emotional represen-
tation of the disease, including the recovery of a sense of
control over the body [28–30]. Successful patient engage-
ment may also be related to a positive shift in the ways in
which patients perceive self and life and experience
empowerment to realize their life potential. According to
the present results, patient engagement may allow indi-
viduals to experience a feeling of active participation in
their lives via a renewed sense of authorship over their life
events.
The finding that advancement in the engagement process
orients the healthcare needs and care priorities of patients
are also important in revising current conceptualizations of
QoL. Indeed, the meaning of QoL to patients appears to
change during the engagement process as health priorities
undergo modifications (see Fig. 2). These results appear
synergistic with research that supports the assumption that
individuals change their internal standards of aspects of
quality of life over time or as a results of changes in their
health condition [31–33]. In Fig. 2, we propose an adap-
tation of the model by Graffigna et al. by integrating
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findings about the QoL shift along the engagement process.
It is interesting to note that while the patient’s position
along the engagement process change, also the patient
perception and meanings attributed to his/her QoL vary.
These results appear in line with the literature on response
shift and may be a further confirmation of these processes
of appraisal [34–37]. This mechanism is based on the fact
that human being actively constructs meaning from their
environment and displays a range of cognitive and emo-
tional mechanisms to continually adapt to changing cir-
cumstances. Also, people evaluation and meanings related
to their QoL are highly individual with patients varying
considerably in what they consider important for their QoL
over time and in response to changing circumstances. In
our study, this phenomenon finds confirmation as well as
the meaning of QoL shifts from a dependence on effective
disease management to the possibility for patients to make
wellness plans. When patients are in the final phase of the
engagement process—the ‘‘eudaimonic project phase’’—
QoL means a recovery of life projectuality, which is con-
sistent with the WHO’s definition of QoL as the ‘‘indi-
viduals’ perception of their position in life in the context of
the culture and value systems in which they live and in
relation to their goals, expectations, standards and con-
cerns’’ [38]. This result supports and makes valuable the
healthcare systems efforts toward fostering patient
engagement in health care.
Beyond this common pattern of adjustment to the
chronic condition across clinical populations, we also
identified some disease-related specificities in the engage-
ment process that might be related to unusual psychosocial
dynamics when coping with a certain condition. Knowing
these specificities is fundamental to better address the
patient’s care expectations and needs and to better sustain
their quality of life along the medical course.
According to these reflections, patient engagement
considered as the process that patient go trough in order to
gain a renewed life projectuality is a powerful concept
capable of reflecting significant psychosocial changes that
promote patient QoL. There appears to be theoretical and
empirical justification for a broad definition of QoL.
Considering this aspect as our starting point, we argue that
fostering patient engagement in their health allows them to
realize their life potential, and this is a key concept in the
promotion of a patients’ experience-sensitive QoL inter-
ventions and assessment measures.
The present results also shed light on the value of
research approaches that provide a voice to the patients’
healthcare experience. This way of conducting research is
crucial for orienting clinical services that are responsive to
patient engagement expectations and priorities. In this
context, qualitative research can contribute to the innova-
tion of healthcare practices to foster better engagement of
patients’ in the management of their health care. As sug-
gested by our results, a focus on patients’ subjective
experiences of illness and their specific techniques for
engaging in health management is becoming an undeniable
component of healthcare research because it may elucidate
care models that are most effective for attuning healthcare
systems to patient quality of life needs and expectations.
The heuristic value of this study is characterized pro-
viding insights about the linkage between the concepts of
patient engagement and quality of life by rooting results in
a context-sensitive research plan in which the voice of
patients is considered prominently as the main characters
of the care process. Our results suggest that researchers and
clinicians should extend their focus on chronic illness from
how it affects the clinical status of a patient to how it
reframes the patient’s life projectuality and ability to be
actively engaged in their health care according to their care
experience. Applying this perspective highlights some of
the limitations of current methods of measuring quality of
life in terms of their ability to assess accurately the impact
of illness or treatment and to quantify and understand
changes in the evaluation of an impact over time. For the
remainder of patients, healthcare practitioners should
consider encouraging them to make wellness plans,
acknowledge the emotions and cognitions they have about
Fig. 2 Patient engagement in health care: pathways for gathering quality of life by recovering life projectuality
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the disease, challenge the barriers for engaging in health
care, and find meaning in small things. Only recognizing
these facts, patients’ quality of life could be really
promoted.
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