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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: serena.barello@unicatt.it

G. Graffigna

e-mail: guendalina.graffigna@unicatt.it

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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