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[Qualitative Research in Medicine & Healthcare 2021; 5:9489] [page 23]
Introduction
Patient involvement has increasingly become part of
the way European healthcare systems seek to organise and
produce healthcare services.1-3 In Denmark, patient in-
volvement is considered relatively well-developed at the
formal level; patients have extensive rights to choose
providers and to voice opinions about services.3,4
The literature has seen a rapid increase in studies of
involvement and related concepts such as empowerment
and patient-centred care. In different constellations, pa-
tient involvement is seen as a means to improve health-
care, provide more equal, less hierarchical clinician-
patient relationships, and increase patient influence. The
patient is perceived as having progressed from being a
passive service recipient. Instead, patients are considered
resourceful and active individuals who can take respon-
sibility for self-care.3,5,6
Patient involvement covers various understandings
and practices.2,7,8 Scholars have generally pointed out a
lack of clarity in the definition and purpose of patient in-
volvement.7,9,10
Conceptually, models and frameworks have been de-
veloped that define different types of involvement.1,11,12
In the Nordic countries, in key health policy documents
and reports, various involvement discourses have been
identified.13,14 While these analyses contribute important
knowledge about involvement at the policy level and pro-
vide tools to elucidate the lack of theoretical clarity, they
The ruling relations of patient involvement in cardiac rehabilitation
programs
Nynne Barchager
Department of People and Technology, Roskilde University, Roskilde, Denmark
ABSTRACT
Patient involvement has often been defined and examined on the basis of conceptual theoretical frameworks. This article explores
patient involvement contextually and locally, in encounters between patients and healthcare professionals in cardiac rehabilitation in Den-
mark. With inspiration from institutional ethnography, the goal is to unpack what involvement actually implies in rehabilitation activities.
The analysis provides micro-sociological insights into how patient involvement is constituted and institutionally conditioned and shows
how textually mediated ruling relations regulate activities and in-
teractions, shaping patient involvement in local practices. The
analysis reveals how patient involvement primarily relates to
healthcare professionals involving patients in health knowledge.
It explores how national guidelines and local instructions for
healthcare professionals frame understandings of patient needs
and problems. The concluding discussion highlights how patients
have limited opportunities to influence their own care process. It
also points out how it is left to the individual healthcare profes-
sional to solve contradictions between institutionally defined tasks
and the ambition of patient involvement.
Nynne Barchager, Department of People and Technology, Roskilde
University, Universitetsvej 1, Building 44.1, 4000 Roskilde,
Denmark.
E-mail: nyba@ruc.dk
Key words: Patient involvement; institutional ethnography; cardiac
rehabilitation; clinical guidelines.
Acknowledgements: A big thank you to the healthcare profession-
als who welcomed me, let me listen to their talks with patients, and
told me about their practice. An equally big thank you to the car-
diac patients who told me about their lives and experiences of con-
tracting heart disease and allowed me to join them along their care
pathways. I would also like to thank Betina Dybbroe for valuable
comments on drafts of the article.
Conflict of interest: The author declares no conflict of interest.
Funding statement: The article is based on the PhD study con-
ducted by the author, which was carried out with joint funding from
Roskilde University and the Danish region mentioned in the article.
The Danish region in question is anonymized in the article to main-
tain the anonymity of the hospital ward where the fieldwork was
conducted.
Availability of data and materials: All documents analysed are pub-
licly available. Local instructions from the hospital are publicly
available as well; I have not provided the link to these, as I wish to
maintain the anonymity of the hospital ward.
Ethics approval and consent to participate: The study was regis-
tered and approved by the Danish Data Protection Agency. Rele-
vant permission to conduct fieldwork was obtained from the
hospital management and from involved health professionals and
patients. All participants are anonymised. The patients participating
in the study have all been informed orally and in writing and gave
their consent.
Received for publication: 12 November 2020.
Accepted for publication: 1 April 2021.
This work is licensed under a Creative Commons Attribution Non-
Commercial 4.0 License (CC BY-NC 4.0).
©Copyright: the Author(s), 2021
Licensee PAGEPress, Italy
Qualitative Research in Medicine & Healthcare 2021; 5:9489
doi:10.4081/qrmh.2021.9489
Qualitative Research in Medicine & Healthcare 2021; volume 5:9489
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reveal little about how involvement is manifest in specific
practice contexts.
This article deals with involvement at a local and con-
textual level in a hospital ward in Denmark. By analysing
data from more comprehensive ethnographic fieldwork,
the article aims to produce micro-sociological insights
into how involvement is constituted in actual activities,
and how it is institutionally conditioned and shaped.
Empirical studies of involvement are often based on
specific definitions or models of involvement to which
practices are then related; the conclusions then reveal the
discrepancies between ideal and practice.15-17 This study
employs a different approach. Methodologically and an-
alytically, the article draws inspiration from D. E. Smith’s
institutional ethnography (IE). This implies an inductive
approach where discovery is central; the research process
does not start from predefined theoretical understandings
or concepts. Instead, people’s experiences set the prob-
lematic of the study.18
My point of departure for studying involvement with
this approach is an episode from my initial fieldwork: I
was conducting a pilot study, which involved accompa-
nying various clinicians in outpatient rehabilitation of car-
diology patients, and I was observing a doctor’s
consultation with a 77-year-old woman. The woman had
not participated in the physical exercise that was part of
the rehabilitation program, and when asked for her reason
for this, she explained that it was due to influenza and lack
of energy. During their conversation, the doctor repeatedly
recommended exercise, emphasised the importance of this
and informed her of her options: she could either exercise
in the outpatient program at the hospital or enter a munic-
ipal exercise program. She expressed her preference for
the outpatient program, but maintained that she wanted to
wait until she felt better.
The conversation could be analysed as an example of
shared decision-making, an involvement model that has
received particular attention in Danish healthcare. The
idea is to facilitate a partnership between patient and cli-
nician, where mutual exchange of knowledge and infor-
mation forms the basis for decision-making. However,
when the woman had left the room the doctor turned to
me with these words:
I make a big point of telling her how important ex-
ercise is, but she still doesn’t do it…. How can you
involve someone like her?? She says she has no
extra energy. How can I persuade her to do what’s
good for her??
What struck me about this is that she was not recog-
nised as a patient who made informed decisions, but in-
stead, was articulated as representing a failed attempt at
patient involvement. This posed a problem to me: How
does he actually understand involvement? What should I
consider as involvement if this was not a case of it?
In IE, the researcher tries to discover and unpack what
specific actions are concealed in the use of abstract and
taken-for-granted words (such as involvement). It is not
assumed that involvement exists (or should exist) as the
same phenomenon across contexts; instead, the researcher
makes it an empirical issue to reveal precisely how it ex-
ists.19 The focus is on exploring how practices (specific
activities, actions, and interactions) are structured by ob-
jectified, extra-local forms of social organisation, which
IE terms “ruling relations.” Ruling relations are consti-
tuted externally to the local particularity of people and
places and are mainly textually mediated. Texts such as
policy documents and guidelines are read and taken up in
specific practices; they thus regulate chains of action
across local contexts and make actors and actions institu-
tionally recognizable. The aim of this article is thus not
to conduct a policy analysis, but to analyse how policies
and other texts are activated in practice, affecting the ways
in which involvement can manifest itself in specific local
activities and interactions in cardiac rehabilitation, as well
as how involvement is woven into and shaped by certain
logics from practice.
Patient involvement in Danish cardiac care
In Danish healthcare, we see an ever-increasing focus
on patient involvement. Historically, the right to informed
consent became a legal requirement in 1992; patients must
be informed of the possibilities and risks of treatment and
consent to treatment before it begins. The Health Act
guarantees all inhabitants of Denmark the right to treat-
ment, free choice of hospital, guaranteed waiting times,
and involvement in treatment decisions. Systematic in-
volvement of patients is part of the national quality assur-
ance program, where hospitals are regularly accredited
based on various general objectives. Danish regional
healthcare also includes patient involvement in its quality,
patient, and communication policies. An involvement
model that has received particular attention in Danish
healthcare is shared decision-making,8,15 and in 2016, the
government allocated DKK 38 million for the develop-
ment of tools to support shared decision-making with a
view to introducing these in many areas of healthcare, in-
cluding cardiology.
In cardiology, patient involvement was placed on the
agenda following the DANREHAB trial,20 while the re-
port Cardiac Rehabilitation: A Medical Technology Eval-
uation, Evidence from the Literature and the DANREHAB
Trial21 emphasised that the basis for successful rehabili-
tation is patient involvement.
Patient involvement is important in cardiology be-
cause heart patients often have difficulty in maintaining
long-term lifestyle changes.22 They also have complex,
non-linear recovery processes and individually unique
ways of dealing with heart disease.23-25 Positive effects of
patient involvement include perceived greater ownership
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and responsibility for the care process and higher treat-
ment satisfaction.15,21,26
When cardiac care pathways were introduced in 2010,
patient involvement was formally included in official rec-
ommendations. Patient pathways apply to the entire care
process (from suspicion of disease to treatment, rehabilita-
tion, follow-up care, and monitoring) and are used across
sectors, units and professional groups. They are part of a
more general transformation in Nordic healthcare services
towards increasing standardisation with the aim of creating
uniform services and levels of quality, while also reducing
costs. The general move towards standardisation has been
criticised for upsetting the balance between humanistic and
medical aspects of practice, and the concept of patient path-
ways has been highlighted as a policy-driven transforma-
tion that challenges rather than increases quality of care.27,28
Concerning cardiac care, the Danish Health Authority states
that pathways aim to create a more uniform, consistent
process, shorter waiting times, and a more appropriate pri-
oritisation of resources.29 This suggests an ambition to
make pathways more efficient, but also more reliable
through increased formal interdisciplinary collaboration
and coordination. In the context of the cardiac pathways,
patient involvement is included as a means of enhancing
consistency and continuity.
In the following, I outline the analytical approach and
the empirical material that analysis draws on which con-
sists of observations from a hospital ward and some of the
key policy documents in cardiac rehabilitation in Den-
mark. I will then proceed to analyse how these texts reg-
ulate local practice and discus the implications of this in
relation to patient involvement.
An institutional ethnographic approach
Methodologically and analytically, this article is in-
spired by IE. One such inspiration is to examine “people’s
actual doings” (p. 55). 18 instead of assuming that a phe-
nomenon (such as involvement) exists in the same form
across different contexts. In IE, the researcher tries to un-
pack what practices are concealed in the abstract and
taken-for-granted use of nominalizations. Nominaliza-
tions, such as involvement, are terms that convert verb
forms into nominal forms thereby rendering invisible the
specific subjects and their activities, ignoring that “some-
one or something does something or is supposed to do
something” (p. 111).18 The idea is to invert the procedure
and reinstate people and their activities. In my context,
this means that I focus on involvement as a process where
someone must involve somebody in something, and I con-
centrate on the specific local events, i.e. the rehabilitation
activities, which both patients and healthcare profession-
als are a part of.
Although IE focuses on the empirical description of
local activities, it is equally important to explore how
these activities are linked to objectified extra-local ruling
relations. Ruling relations denote trans-local forms of so-
cial organisation and social relations that are objectified
in the sense that they are constituted externally to the local
particularity of people and places.18 A key point for Smith
is that people’s actual doings are coordinated by ruling re-
lations, which are mainly textually mediated. Texts can
be read and adopted across local contexts and can there-
fore regulate and standardise people’s activities independ-
ently of time, place and person; people’s actions become
recognizable as institutional activities.19 According to
Smith, texts must be considered as something that hap-
pens. They enter and are activated in specific situations,
where they organise and regulate actions, consciousness,
and subjectivity. Texts are activated when they are read,
watched or heard. The readers engage in “text-reader con-
versations” (p. 174), described by Smith as the conscious-
ness being brought into an active relationship with
intentions originating beyond the local.19 “Its activation
by a reader inserts the text’s message into the local setting
and the sequence of action into which it is read” (p.105).18
Unlike face-to-face conversations, text-reader conversa-
tions are characterized by the one side of the conversation
being fixed and unresponsive. The other side of the con-
versation – the reader – is active in responding to, inter-
preting and acting from (interpretations of) the text.18 The
text, however, remains a constant point of reference
against which particular interpretations can be checked,
and in this constancy, lies the standardising effect.19 How-
ever, it is important to note that they do not determine ac-
tions, but rather regulate and shape institutional actions
in similar ways across local contexts.19 Exactly how spe-
cific texts happen must be discovered in the local con-
text.19 The IE perspective thus captures the particular and
the extra-local at the same time.
While centring on specific subjects and their actual ac-
tivities, an IE perspective views subjectivity and agency
as being constituted in texts through institutionally de-
fined properties and categories: “subjectivity…organised
as objectives to be pursued, tasks to be undertaken,
[and]others to be connected with…. Such organisational/
institutional categories locate subjects in procedures,
processes, tasks, and so on that are standardised in autho-
rised texts” (p. 185).19 The subject of analysis is thus not
the individual, but rather how subjectivity is organised
and how institutional procedures localise subjects as ac-
tors. Consequently, this article focuses on clinicians and
patients as actors and their institutionally orchestrated ac-
tions and interactions.
Empirical material
This article is primarily based on empirical material
from observations in a cardiology ward. These observations
were part of a larger longitudinal ethnographic study, which
followed five heart patients from discharge, throughout
their rehabilitation and continued subsequent to the termi-
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nation of the outpatient program up until one year after their
heart incident. (See the Appendix for a more detailed de-
scription of the full research design.) The empirical material
consists of field notes and transcribed recordings of clini-
cian-patient dialogues both from a preliminary pilot study
and the main study in which I attended various outpatient
rehabilitation activities including patient education ses-
sions, individual consultations with doctors, nurses, dieti-
tians, psychologists and physiotherapists, and an
eight-week physical training program.
The ward was selected as an example of a hospital
ward in a Danish region with patient involvement as an
objective. Relevant permission was obtained from the
hospital management. The names of patients in this article
have been replaced by pseudonyms. All were informed
about the study orally and in writing, gave their consent.
The referred dialogues with healthcare professionals were
informal and are all anonymised. The study was registered
and approved by the Danish Data Protection Agency.
During the fieldwork period, preliminary observations
were presented and commented on by a reference group
consisting of clinicians from the cardiology ward. Excerpts
from the data and draft analyses were also presented and
discussed with other PhD students at interpretation and
analysis workshops at Roskilde University.
Analyses also draw on data from key policy docu-
ments and local instructions, as I will now proceed to
elaborate further on below.
Selection and description of active texts
In a complex institution like a hospital, many texts will
naturally be activated in daily practice, and they could not
all be examined in this study. In my analysis of rehabili-
tation activities, I include certain texts as particularly im-
portant and active. The texts were selected after the
process of conducting fieldwork was terminated and dur-
ing the process of analysis.
The first is the descriptioni of Patient Care Pathway
for Unstable Angina Pectoris (UAP) and Acute Myocar-
dial Infarction without ST Elevation (NSTEMI),29 which
has a coordinating function in pathways that cross sec-
tors, units, and professional groups. Each step in the
pathway from suspicion of heart disease to treatment and
rehabilitation is described, including procedures, tim-
ings, clinical actions and decisions, logistical actions,
administrative procedure codes, information for patients,
and which actors are involved and responsible for the
various steps.
This is the only text discussed with an explicit focus
on patient involvement, and I therefore devote some space
to how involvement emerges here.
As mentioned, patient pathways aim to create more
consistency and continuity in patient care. Consistency
and continuity refer to the coordination of activities be-
tween different sectors, units and healthcare professionals
involved in the patient pathway in order to minimise un-
necessary waiting time.29 It is also emphasised that no pa-
tient should feel left alone without involvement, clear
information, and scheduled appointments.29 In the path-
way description, patient involvement implies ensuring
that the patient has an overview of the pathway, which ap-
pears to mean informing the patient about the treatment
and pathway: “As part of the communication, patients and
their relatives must be continuously involved and in-
formed about results of examinations and the next stage
of the pathway” (p. 10).29
The document does not actually define involvement,
but links it to the legal requirement for informed consent.
It states: “The legal requirement for informed consent
must ensure that the patient is involved in all treatment
decisions. The patient and the healthcare professional
must jointly decide on the pathway, to which the patient
must consent, after receiving complete information” (p.
10).29 This does not appear to suggest an understanding
of involvement that goes beyond the requirement of in-
formed consent. Further, all the specific decisions de-
scribed for each stage of the pathway are defined as
clinical and to be taken by the professionals.
Elsewhere, the wording suggests that involvement not
only relates to information for patients, but also to their
resources and needs, e.g.: “In addition to knowledge and
understanding of the patient’s individual communicative
ability, patient involvement requires professionals to ac-
tively involve the resources and accommodate the needs
of the patient and the patient’s relatives” (p. 11).29
The document states that rehabilitation must be organ-
ised individually in consultation with the patient, but it
must also be based on the pathway standard, “where the
separate stages are organised as well-defined events in
terms of timing and content and follow a pre-determined
path” (p. 3).29 The patient is thus supposed to participate
in planning the pathway, but there seems to be limited
scope for this in a pathway that is pre-determined and
standardised in terms of timing and content. Moreover,
responsibility for assessing patient needs lies with the pro-
fessionals. What must be assessed is whether the patient
should be offered all or only parts of the pathway. There
is thus no provision for the patient to be active as an actual
decision-maker, and what the patient may accept or reject
are activities in a standardised offer.
Apart from the above, there is no indication of the pa-
tient’s role in the process. The only patient contribution
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Article
i In 2017, the Danish Health Authority decided to phase out the cardiac
care pathways described in their form at the time. The reasons were that
the procedures were too inflexible and difficult to use in everyday clini-
cal practice and particularly, that the stipulated periods for various ac-
tions made little sense to patients and professionals. The pathways were
replaced by a series of recommendations based on their content. The
professional basis thus remains unchanged, while the fixed periods and
requirements for additional registration in the pathway description are
no longer valid.
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mentioned is informed consent, and there is no further ex-
planation of actively involving the patient’s resources or
of the patient needs to be met.
The second text is the National Clinical Guideline for
Cardiac Rehabilitation30 which describes recommenda-
tions and best practice for rehabilitation and its elements.
The document provides evidence for these elements,
which include both specific activities and the content of
the program, such as physical exercise, patient education,
psychosocial care, detection of anxiety and depression,
dietary interventions, and smoking cessation. Further, it
provides instructions for how to systematically refer to
the pathway, handle barriers to adherence, and examine
patients’ employment situation.
The document is targeted at healthcare professionals
and “can be used by professionals in decision-making
about appropriate and sound clinical care in specific situ-
ations” (p. 8).30 The guidelines are not legally binding, but
the Danish Health Authority recommends following them,
and decisions that deviate from the recommendations must
be justified. In addition, the regular accreditations involve
an assessment of whether the recommendations have been
followed.30
The final type of text is regional or hospital-based in-
structions for healthcare professionals. I was referred to
these documents by healthcare professionals during the
fieldwork. These are specific guidelines for each rehabil-
itation activity, describing the purpose, procedure, respon-
sibility and documentation of the activity. These
instructions can be seen as an intertextual complex: each
instruction refers to other instructions that elaborate on
various topics and areas of rehabilitation. For example,
instructions for talks with individual patients describing
topics to be reviewed can refer to other instructions in re-
lation to the specific procedure for obtaining and provid-
ing information within the defined topics. All the
instructions point out that the staff in the cardiology ward
is responsible for knowing and following them.
The selected texts have been included for various rea-
sons: i) They all contain declarations on clinicians’ re-
sponsibility to know and follow the instructions, which
means that clinicians are actually obliged to engage in
text-reader conversations with these documents; ii) They
all provide instructions on the content and procedures of
the process that can be recognized in the organization of
the actual rehabilitation activities and interactions, as the
analysis will show. However, it should be noted that these
documents do not actually contain anything about patient
involvement, except for the pathway description, as de-
scribed above.
I will now proceed to analyse how the selected texts
happen and are active in the interactions and activities of
the local rehabilitation program. The first two sections
focus primarily, but not exclusively, on how notions from
the national documents (the pathway description and the
National Clinical Guideline) unfold in practice. The last
section will dedicate more attention to the regional and
local instructions. This, however, is an analytical distinc-
tion. As analysis will show, several texts can be said to be
at work simultaneously in specific interactions.
Rehabilitation as a bridge
The description of the pathway divides it into three
phases, where Phase I is treatment, and Phase II is outpa-
tient rehabilitation (the subject of this article); this in-
cludes optimisation of medical treatment, patient
education, physical exercise, support for dietary change,
smoking cessation, psychosocial support, clinical moni-
toring, and follow-up care. Phase III concerns the main-
tenance of preventative treatment and of achieved lifestyle
changes. Rehabilitation is thus a process that extends be-
yond outpatient care and into patients’ everyday lives. The
division into phases has organising capacities in the sense
that it creates a general narrative of linear progress (treat-
ment → changing lifestyle → maintaining achieved
lifestyle changes) that can be rediscovered in the actual
interactions between patients and healthcare profession-
als. In specific pathways, it is taken up by the profession-
als, e.g., when rehabilitation is described as a bridge or a
transition and patients must continue themselves: “This
programme is time-limited. Afterwards, you should con-
tinue yourself. You continue with this lifestyle change”
(patient-physiotherapist dialogue, September 2015). “You
exercise with us as a bridge to making progress yourself
“(doctor-patient dialogue, June 2015). In this way, Phase
II is interpreted as an intermediate station, before patients
become capable of making progress themselves and as-
sume responsibility for the preventative measures. This
locates the patient, as an institutional category, in a trans-
formative process of becoming responsible and capable
of certain actions. It also carries the assumption that pa-
tients are not responsible or capable of making progress
themselves when they initiate the program. The means of
achieving this transformed patient becomes visible when
we look closer at the actual activities and interactions in
relation to the National Clinical Guideline. This text is
important because it names, describes, and recommends
the activities that a rehabilitation program should consist
of e.g., physical exercise, dietary interventions, etc.
The recommendation of patient education is particu-
larly interesting because it enters practice in ways that are
not confined to formal group teaching sessions. It seems
to be at work in several other activities as well such as in-
dividual consultations and physical exercise. For example,
physiotherapists teach patients about the different effects
of interval exercise and strength training and of how to
measure their level of physical exertion by the Borg-scale.
The National Clinical Guideline states that the aim of
patient education is to “strengthen patients’ self-care, ca-
pacity for action and autonomy and give them an under-
standing of the disease and its treatment” (p. 21).30
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It recommends a combination of group teaching and
individual counselling and lists the relevant general top-
ics. In practice, group teaching focuses on general knowl-
edge about the heart, heart disease and related topics (such
as symptom recognition, medication, side effects, diet,
mental reactions, exercise, legislation), which is in line
with the recommendation. Individual consultations cover
the same topics as group teaching, but are more individ-
ualised, e.g., participants are told what was wrong with
their heart in particular, and individual lifestyle adjust-
ments are discussed based on diet, smoking, alcohol, and
exercise (four key factors in Denmark) and on the partic-
ipant’s blood test results.
The focus on knowledge to enhance patients’ own ca-
pacity for action from the National Clinical Guideline, is
taken up by healthcare professionals in the group teaching
sessions where patients are told: “This teaches you to take
care of your condition yourself.” (doctor teaching about
medication and side effects, July 2015) and “If you can
understand what’s wrong, you can also understand what
to do” (doctor giving introductory lesson, June 2015).
In individual consultations, the educational aim is seen
in the way patients are often asked to repeat what they re-
member from the teaching, e.g. about diet: “What are the
good fats?” “What types of meat are heart-friendly?”
“How many hours of exercise per week does the Danish
Health Authority recommend?” The focus is on patients’
(missing) knowledge, on making them understand, and on
promoting compliant behaviour. One doctor told me that
he tried to form an impression of whether they “had got
the message,” whether they “would comply in the future,”
whether he “could send them home with a clear con-
science,” and whether “they take responsibility for their
lives” (conversation with a doctor, June 2015).
As mentioned previously, the National Clinical
Guideline lists the general teaching topics. It also states
that “the content must be based on topics that are impor-
tant to patients and relatives to know more about. The
general topics will be: the normal and the sick heart –
symptoms, medication, diet and intake of fluids [etc.]” (p.
25).30 One could ask how it can be predefined in a policy
document what will be important to patients if they are
understood as actual and specific individuals. Instead,
here they are an institutional category characterised by a
lack of certain knowledge. What is important to them is
defined externally, from a place (the text) outside their
own experience.
In the local context of the rehabilitation program, the
healthcare professionals solve this schism by trying to
adapt information to patients based on their diagnosis and
treatment and on an impression of what they already
know. For example, during group teaching, the dietitian
starts the lesson by asking them, in turn, what they con-
sider heart-healthy food. They then mention low-fat food,
vegetables, fish, etc. The dietitian then says, “You’ve
grasped the essentials, but I didn’t hear you mention bread
that much.” She talks about wholemeal bread and shows
a power point slide with a diagram of foods divided into
categories: green (food you basically cannot have enough
of), yellow (food you can replace with something else)
and red (food you really should cut down on) (Lesson by
a dietician, June 2015).
It is thus a question of sorting and prioritising infor-
mation and topics already determined: what patients must
know to perform self-care in accordance with the evidence
in the National Clinical Guideline.
Regarding individual consultations, a nurse told me
that she uses the patient’s narrative as a basis for choosing
relevant topics from among those defined in the local in-
struction. She explained that she uses the instruction as a
checklist during conversations. In this way, the text enters
the actual interactions. The nurse engages in a text-reader
conversation interpreting the local instructions and the pa-
tient’s narrative in relation to each other thereby assessing
what are the most important themes from the instruction
in the case of this particular patient.
Further, the nurse told me that patients often “need
knowledge about their particular illness and its develop-
ment.” She explained to me that she often starts the con-
versation by getting them to talk about their illness
experience and pathway and that this gives her an insight
into how they have experienced their disease and what is
important to them: “What they have understood out of
everything they have been told. You cannot remember it
all. They often need to know what exactly was wrong in
their particular case, and what has been done” (Conver-
sation with nurse, August 2015).
This suggests that the aim of the dialogue is not just
to discover what is important to the patient in his or her
own experience, but also to find out what the patient has
understood. In other words, she is performing the task of
identifying knowledge gaps, which can be seen as the ac-
tivation of the educational scope in the National Clinical
Guideline.
So far, I have pointed out how different texts play a
structuring part in the actual activities and interactions in
the local context of the rehabilitation program. The path-
way description organizes patient pathways in a general
narrative of progress that places patients in a transforma-
tive process of becoming capable of taking responsibility
for preventive measures themselves. This is to be
achieved by educating the patient (based on the recom-
mendations in the National Clinical Guideline), providing
them with health knowledge that is deemed important in-
dependently of the individual patient. In these documents,
the patient as an institutional category is characterized by
a lack of knowledge. The notion of educating the patient
can be seen as a ruling relation as it originates beyond the
local context of the rehabilitation program, but structures
the actual interactions between healthcare professionals
and patients. It organises consciousness and actions as it
orients healthcare professionals to the task of identifying
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knowledge gaps in order to select information relevant to
the actual patients in individual consultations as well as
group teaching sessions.
Imperative and assumed decisions
in cardiac rehabilitation
In this section, I will address some of the implications
of the previously mentioned narrative of progress in rela-
tion to actual dialogues drawn from two consultations.
The narrative of progress was identified in the way the
pathway description divides the pathway into phases and
in healthcare professionals’ conceptualisation of the reha-
bilitation program as a bridge.
The narrative implies the assumption that patients in re-
habilitation make lifestyle changes in the areas mentioned,
that in Phase III there are some achieved lifestyle changes
that can be maintained. This presupposes patients who ac-
tually decide to change their life and succeed in this. The
opposite scenario (that a patient does not make lifestyle
changes or tries but fails) is not addressed in the text and
thus does not seem to be an alternative that healthcare pro-
fessionals can operate with. One professional told me dur-
ing the fieldwork that patient involvement in decisions only
seems relevant to a limited extent, as patients have already
completed their treatment (i.e., specific interventions such
as balloon dilation or bypass surgery). Rehabilitation is thus
understood as a kind of follow-up process when the deci-
sions have already been made.
In consultations with patients, healthcare professionals
regularly assume that they have decided to make lifestyle
changes. Dialogues focus on which types of exercise the
patient prefers and which dietary adjustments can be
made. Thus, the relevant decision is a question of which
ones, while the decision to actually make lifestyle changes
is a given. In Christine’s case, for example, the nurse ad-
vises her to find a type of exercise that she feels like doing,
since she does not like exercising in the gym. After talking
about diet and blood tests, the nurse returns to the subject
of exercise, telling Christine that in, addition to improving
her glucose levels, exercise does her a lot of good:
Nurse: You avoid lots of diseases. It’s healthy in
many ways, she adds.
Christine: Yes, I know that.
Nurse: I can explain it on a lower level. [She takes
a model of an artery and begins to explain.] If the
blood clot has been in any of the small arteries
around the heart, they can’t always find it.
This is likely in Christine’s case, she explains, because
they can see that there has been a blood clot, but have not
found it. She explains how fatty deposits can occur, caus-
ing inflammation which can make the artery rupture more
easily. Exercise, the nurse continues, stabilises and pre-
vents the arteries from rupturing so easily. Exercise and a
heart-friendly diet including vegetables and fibre, slow
down the inflammatory process:
Nurse: What do you think about that?
Christine: Well, yes, I must try that.
The nurse says that sitting still and smoking is almost
as risky.
Christine: Yes, I do that. There’s no reason to lie
about it.
The nurse continues by saying that it will be great if
Christine can integrate exercise:
Nurse: You don’t want to come back here in five
years. I’m sure you want to keep going for many
more years.
Christine: You’re very nice, but I think I can find
a better way to spend five days than
coming here.
Nurse: Alcohol? Do you drink alcohol?” (dialogue
between Christine and a nurse,
March 2016)
Integration of exercise in Christine’s life appears here
to be a matter of life and death; if she refuses to exercise,
she is choosing death within five years. The fact that the
choice to make lifestyle changes is not understood as a
real choice can be seen as an extension of the close rela-
tionship between heart disease and lifestyle, implying that
an unchanged lifestyle almost equates with the choice of
a new blood clot. In this way, the decision to integrate ex-
ercise in her everyday life appears imperative.
It is interesting to note how multiple texts seem to be at
work in this interaction: i) the imperative to change lifestyle
from the pathway description, ii) the nurse’s explanation of
“what happens inside the artery” in line with the educa-
tional aim from the National Clinical Guideline, and iii)
the sudden jump from one subject (exercise) of conversa-
tion to another (alcohol). This change of subject is not
prompted by anything in the actual exchange but derives
from somewhere outside the conversation, more specifi-
cally from the local instruction of nurse consultations that
specifies the topics to be touched upon in this type of con-
versation. As a result, the instruction regulates the interac-
tion in a way that makes the conversation resemble an
interview more than an actual dialogue.
Returning to the subject of imperative decisions in the
rehabilitation program, the following dialogue between
Ejner and a nurse, is an example of a consultation in which
the decision to make lifestyle changes is challenged:
Nurse: So if you make a mental note of it, that
everything from the animal kingdom is bad, except
fish, and everything from plants is good.
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Ejner: That’s funny. All that healthy stuff. It’s usu-
ally more expensive. Let’s say fish, for example.
If I buy salmon for myself, that’s a hundred kroner,
but you can buy mincemeat that costs twenty. Then
hell, I’d rather buy the mince.
Nurse: Yes, well that’s—
Ejner: Because you don’t get so much on a state
pension.
Nurse: No, but once again—
Ejner: Just occasionally, of course.
Nurse: It’s up to you. I can only inform you about
what we recommend from here. Of course, we
know from many years of research that this is how
we recommend you to live if you want to avoid
getting ill again or your atherosclerosis getting
worse. But, of course, I can’t, I can’t tell you to do
it, you know. You choose yourself when you’re out
shopping, what you want.” (Dialogue between
Ejner and nurse, June 2016)
Ejner’s objection is that, as a state pensioner, he also
has to think of his finances, and he cannot afford to buy
fish twice per week. However, the nurse does not seem
to recognise his small state pension as a real problem,
but instead speaks of it as a choice. Moreover, there is
clearly a right choice, supported by many years of re-
search. She cannot force him, but if he makes the wrong
choice he risks getting ill again or getting a narrowing
of the arteries in his heart, and he chooses himself when
he’s out shopping. In this way, Ejner’s decision seems
illegitimate, as it challenges the recommendations for a
heart-healthy diet. This episode demonstrates what can
happen when healthcare professionals encounter patients
who do not fit in with the pathway description’s notion
of a patient that during Phase II makes the appropriate
lifestyle changes. Ejner basically just ends up being held
accountable for his “choice.” The exchange does not
lead to any real help or solution for him, nor any real
recognition of his situation.
This section has pointed out how the general narrative
of progress in the pathway description assumes the deci-
sion to make lifestyle changes. This assumption organizes
the actual interactions in the way that it directs focus to
the question of which ones, while the decision to change
lifestyle in the designated areas appears imperative. When
the assumption is challenged, the patient is assigned with
the responsibility for the recurrence of the disease.
The ruling relations of individual consultations
with healthcare professionals
In the following, I will use the two examples of con-
sultations above to discuss what makes the dialogues de-
velop in this particular way. How can it be that the nurse
responds to Ejner’s objections by holding him account-
able for his choices? Why are patients faced with the re-
currence of their disease, followed by death, if they do not
follow the recommendations? These actions do not appear
to originate from interpretations of the pathway descrip-
tion. As indicated, it does not operate with the concept of
a non-compliant patient.
During the fieldwork, one nurse called it a “dilemma”
for clinicians when patients’ wishes run contrary to pro-
fessional recommendations
because it looks bad if we don’t get the patient to
achieve our goals…. It’s difficult, because you’re
trained so much in guidelines that you have to fol-
low, and you’re kind of a bad nurse if you can’t get
a patient to stop smoking (conversation with nurse,
June 2016).
On the one hand, healthcare professionals are asked
by management to involve patients, but on the other hand,
they must follow guidelines and instructions that give
them tasks that do not necessarily harmonise with the am-
bition of patient involvement.
Previously, we saw how instructions constrained the
dialogues between nurses and individual patients. In ad-
dition, the goals the nurse mentions above are institutional
goals, which must be given priority in consultations with
patients because the hospital’s performance is measured
by these. The nurses I talked to said that these goals are
satisfactory blood pressure and cholesterol levels, the cor-
rect amount of exercise according to the recommenda-
tions, and smoking cessation. In addition, part of the ward
budget is withheld and only paid out if the set goals for
blood-thinning treatment and screening for diabetes have
been achieved. There are thus several “layers” of ruling
relations, such as the limiting of topics in the instructions
and the financial sanctions linked to certain mandatory el-
ements in every dialogue. According to the nurses, this
means more focus on what can be measured than on other
things. As one of them stated, there are “many things to
do, so it’s a bit easier to make sure the blood pressure is
ok than ‘How can I actually involve this patient?’” (con-
versation with a nurse, June 2016).
In Ejner’s case, the subject of the interaction is diet.
The instructions describe this as a risk factor, i.e. one of
the subjects to be discussed with the patient (Local in-
structions on Cardiac Rehabilitation - Individual, and
Cardiac Rehabilitation - Nursing). The general instruc-
tions for patient interviews specify that i) patients must
be “screened for health risks” by asking about their cur-
rent lifestyle, and ii) the “health risks must be assessed”
by comparing the screening result with the recommenda-
tions of the Danish Health Authority and the patient’s ill-
ness, and iii) “if the patient has an unhealthy lifestyle,
there must be an intervention” in the form of information
about present and future health risks (Local instruction on
Health Risks - Identification and Intervention).
These instructions combined indicate an institutional
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procedure in which certain actions (screen, assess, inform)
must be performed by the institutional actor (here the
nurse). It is also specified how these actions are to be per-
formed: patients must be questioned, results must be com-
pared with the recommendations, patients must be
informed about risks, all of which is essentially what the
nurses do in the dialogues above. The instructions thus
clearly define and structure the nurse’s focus and actions
as an institutional actor, and the standard of the recom-
mendations becomes the framework for defining the pa-
tient’s problems. The instructions contain nothing that
could support advice based on the patient’s actual situa-
tion; furthermore, the responsibility for assessing patient
needs lies with the professional.
This assessment takes the form of a standard proce-
dure, which is also described in the instructions. For ex-
ample, regarding diet, instructions state: “Patients who,
based on the Health Authority screening form for eating
habits, have four negative responses, have very unhealthy
eating habits and therefore need advice/an intervention.”
Regarding exercise: “Patients who, based on the Health
Authority screening form for physical activity in leisure
time, place themselves in category 1, are at risk of devel-
oping illness due to lack of physical activity, and therefore
need advice/an intervention.” (Local instruction on Health
Risks - Identification and Intervention, emphasis added).
The patient’s needs are thus defined externally to the pa-
tient and can be clarified and assessed by the clinician
through the established institutional procedures. Agency
is textually constituted by means of the nominalizations
advice and intervention. In the local actualities, these are
actions: someone must advice and intervene. The text al-
locates agency to the healthcare professionals. Patients, on
the other hand, are assigned with needs, but not with the
agency of making their own assessments of these needs.
Patients are thus textually constituted as passive entities,
as objects of interventions in an institutional procedure that
overrides their subjective experiences and perspectives.
Discussion and Conclusions
Analysis presented above has provided insight into
how patient involvement is shaped in local rehabilitation
practices. Here, patients are predominantly seen as recip-
ients of knowledge, at a more general level in the group
teaching and at an individual level in consultations.
Roughly speaking, one could say that the professionals’
task is to involve the patient in health knowledge. The re-
quirement for healthcare professionals to be able to send
patients on to Phase III with a clear conscience, as ex-
pressed by the doctor above, is that patients gain under-
standing and act in compliant ways. In this light, the
doctor’s questions from the beginning of this article start
to make sense. The 77-year-old woman has not under-
stood the importance of exercise, despite the doctor’s at-
tempts to explain it. She refuses to participate and can
therefore not be involved in the knowledge that will give
her a heart-healthy lifestyle.
In line with other studies, the analysis has also shown
that decisions on lifestyle changes are assumed and that pa-
tient preferences become illegitimate and conflictual when
they deviate from health recommendations.15,17,31 Part of the
explanation is that the documents that structure the pathway
(the textually mediated ruling relations) presuppose patients
who are willing to make, and succeed in making, the rec-
ommended lifestyle changes. They presuppose that there are
some lifestyle changes that the patient can maintain in Phase
III of rehabilitation. Furthermore, the dialogues are struc-
tured by the healthcare professionals’ instructions in ways
that guide the professionals’ focus towards identifying
knowledge gaps and risk factors which frame the definition
of the patient’s problems. This focus shifts attention away
from the patient’s perspectives and life situation, just as the
instructions constrain the dialogue. The textually mediated
ruling relations structure the agenda, actions and interac-
tions, and consequently, patient involvement is shaped in
ways that do not suggest more influence for the patient—
such as influence on the agenda, topics to be discussed, and
the patient’s own definitions of needs, problems or solutions.
However, the clinicians’ statements also seem to con-
tain other understandings of patient involvement than
providing the patient with health knowledge. Different
professionals probably have diverse approaches to patient
involvement; studies show a wide range of understand-
ings of patient involvement within and across profes-
sional groups.26,32
The point, however, is that there is little in the institu-
tional documents to support other approaches to patient
involvement. The pathway description is the only docu-
ment that explicitly mentions it, but this is done in non-
specific terms, without any clarification of the patient’s
actual role or contribution. Involvement of patients (if we
understand involvement as not merely introducing pa-
tients to health knowledge) thus becomes a task for
healthcare professionals to perform in addition to—per-
haps even in spite of –guidelines, instructions and manda-
tory goals and based on their individual interpretations of
what “involvement” means. Furthermore, it will be up to
the individual healthcare professional to find ways to
eliminate contradictions in this situation, which the nurse
called a “dilemma.” It is therefore by no means obvious
how the involvement of specific patients in cardiac reha-
bilitation could take place.
Time, culture, and healthcare professionals’ attitudes
to patient involvement, along with (un)willingness to re-
linquish control, power, and authority, are often high-
lighted as facilitators or barriers to patient
involvement.26,31-35 The findings of the present article add
institutional texts, in their structuring and authorisation of
institutional procedures and tasks, as a significant factor
in local practice. As the analysis shows, institutional texts
structure healthcare professionals’ focus and actions as in-
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stitutional actors. For example, the professionals are to
assess patient needs, and both what and how are described
in the documents. It is thus not merely a question of will-
ingness or unwillingness. Asymmetry and authority are
inscribed in the documents that guide practice, and health-
care professionals are held responsible for knowing and
complying with these institutional texts.
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