Heike Fischer1, Kjersti Grønning2,3. 1. Trondheim Municipality, Trondheim, Norway. 2. Department of Public Health and Nursing, Norwegian University of Science and Technology (NTNU), Trondheim, Norway. 3. Department of Rheumatology, St. Olavs hospital, Trondheim University Hospital, Trondheim, Norway.
Abstract
INTRODUCTION: There are only a few studies investigating nurses' views on self-management in the care of patients with rheumatic diseases. OBJECTIVE: The aim of this study is to explore how Norwegian rheumatology outpatient nurses describe their ways of supporting patients' self-management focusing on the core dimensions of person-centered self-management support. METHODS: Ten individual semistructured interviews with rheumatology outpatient nurses were conducted in Norway from March to September 2017. The interviews were audiorecorded and transcribed verbatim. NVIVO was used to support a systematic analysis of themes and patterns. RESULTS: Nurses' views on self-management support fell into three approaches; (1) narrowly biomedically orientated, (2) biomedically and holistic, and (3) person-centered. The nurse's views of self-management support varied and did not fully align with the core dimensions of person-centered practice. CONCLUSION: The findings indicate that the biomedical paradigm continues to influence Norwegian rheumatology outpatient clinic nurses' approach to self-management support. If person-centered principles of self-management support are to be translated into standard nursing practice, including identifying and supporting patient-defined self-management goals and processes, there is a need to challenge established structures in health care systems.
INTRODUCTION: There are only a few studies investigating nurses' views on self-management in the care of patients with rheumatic diseases. OBJECTIVE: The aim of this study is to explore how Norwegian rheumatology outpatient nurses describe their ways of supporting patients' self-management focusing on the core dimensions of person-centered self-management support. METHODS: Ten individual semistructured interviews with rheumatology outpatient nurses were conducted in Norway from March to September 2017. The interviews were audiorecorded and transcribed verbatim. NVIVO was used to support a systematic analysis of themes and patterns. RESULTS: Nurses' views on self-management support fell into three approaches; (1) narrowly biomedically orientated, (2) biomedically and holistic, and (3) person-centered. The nurse's views of self-management support varied and did not fully align with the core dimensions of person-centered practice. CONCLUSION: The findings indicate that the biomedical paradigm continues to influence Norwegian rheumatology outpatient clinic nurses' approach to self-management support. If person-centered principles of self-management support are to be translated into standard nursing practice, including identifying and supporting patient-defined self-management goals and processes, there is a need to challenge established structures in health care systems.
Rheumatic diseases are responsible for a significant part of the disease burden in
Norway and globally (Knudsen et
al., 2017). While patients with chronic diseases inherently self-manage
life with a chronic illness, they may require self-management support from health
care professionals at various times (Grønning et al., 2016; Grønning et al., 2017) and
according to their individual self-management needs (Sarkar et al., 2008). Patients have
distinct self-management support needs and preferences, requiring nurses to offer a
range of supportive strategies to support self-management. Research shows that
effective self-management support is important as it improves health outcomes (Stenberg et al., 2016) and
is crucial to support treatment of patients with chronic diseases (Farley, 2020).However, an idea around effective self-management support varies for both nurses and
patients. Nurses can also experience ethical dilemmas resulting from tensions
between beliefs and understandings on the one hand, and practical realities and
framing conditions on the other. Despite theoretical insight into what
person-centered self-management support entails, nurses may in their practice focus
on optimal medical outcomes at the expense of patient autonomy, and may demand
active involvement from patients who may either not be willing or not be able to be
more actively involved (Dwarswaard & van de Bovenkamp, 2015). At the same time, patients
differ in terms of both the importance they place on achieving optimal health, their
understanding of optimal health and how to achieve it, as well as how much support
they expect in achieving this (van de Bovenkamp & Dwarswaard, 2017).Person-centered self-management support has been promoted as part of an ideological
and sociopolitically driven shift away from producing health for patients to the
coproduction of health in collaboration with patients. Person-centered
self-management support requires seeing patients as equal partners with expertize
about living with a chronic illness with the aim to coproduce health and increase
quality of life (Ekman et al.,
2011; McCormack et
al., 2015; Miles,
2012), while assessing how person-centered self-management support and
patient-level outcomes are connected remains a challenge (DeSilva, 2014). Person-centered
self-management support has been argued to be better at helping patients to live a
good life despite being chronically ill (Dures et al., 2016; Feldthusen et al., 2016; Rathert et al., 2013;
Voshaar et al.,
2015). In the field of rheumatology, nurse-led care has become a standard
model of care in a number of countries including Norway and has been accredited with
good clinical patient outcomes (Garner et al., 2017; Bech et al., 2020) and high patient satisfaction
(Koksvik et al.,
2013) at a potentially lower cost (Larsson et al., 2015). Recommendations by
the European League Against Rheumatism for the role of nurses working in
rheumatology outpatient care emphasize that a person-centered perspective is
important in the care for patients with rheumatic diseases. A person-centered
perspective implies that the care is holistic, individually tailored, using a
dialog-oriented communication, and collaborative decision making (Bech et al., 2020;
Zangi et al., 2015).
Although there is no single definition of a person-centered care (Kitson et al., 2013; Rathert et al., 2013),
with the terms “person-centered” and “patient-centered” often conflated (Entwistle & Watt,
2013), two core dimensions of person-centered practice are considered central
at the level of the clinical encounter. One core dimension is a holistic
understanding of the person behind the patient and of her/his individual
perspectives, needs, values, expectations, abilities, and capacities. The second
dimension is a collaborative relationship between clinician and patient based on
mutual respect and understanding, aimed at maintaining and developing patient
autonomy (Ekman et al.,
2011; Entwistle
& Watt, 2013; Dwamena et al., 2012; McCormack et al., 2015; Bech et al., 2020;
Voshaar et al.,
2015; Zangi et al.,
2015). A small number of qualitative studies across a range of both
rheumatology and other outpatient settings within Europe have suggested that the
biomedical paradigm are dominating in how outpatient clinic nurses support patients’
self-management (Been-Dahmen et
al., 2017; Morgan et
al., 2017; van Hooft
et al., 2015; Wilson
et al., 2006). There are only a few studies investigating nurses’ views
on self-management in the care of patients with different chronic illnesses (Bos-Touwen et al., 2015;
Dwarswaard & van de
Bovenkamp, 2015; van
Os-Medendorp et al., 2020) or in rheumatology outpatient care (Been-Dahmen et al., 2017).
Ethical dilemmas experienced by nurses when providing self-management support always
include their beliefs and understandings on “good” self-management and patient
autonomy (Dwarswaard & van
de Bovenkamp, 2015). It is vital to understand nurses’ understandings of
person-centered self-management and the tensions between such understandings and
other established ideologies framing nurses’ agency in health care settings.
Arguably, a better understanding of person-centered self-management support
ideologies is a valuable contribution for understanding how patient participation
relates to other values in health care, such as following medical guidelines,
ensuring safety, caring for vulnerable patients, and containing health care costs
(van de Bovenkamp &
Dwarswaard, 2017). To the best of authors’ knowledge, no study of this
kind is conducted in rheumatology outpatient care within Norway. Despite
international guidelines on what person-centered support entails, nurses may support
patients’ self-management in varying ways depending on the cultural, social, and
economic context shaping both views and possibilities of action. Such variations may
be variations in real and perceived nurse autonomy with professional hierarchies,
emphasis on self-reliance, expectations toward nurses’ role in self-management
support and so on. Against the backdrop of the core dimensions of person-centered
self-management support as outlined above, the aim of this study is to explore
Norwegian rheumatology outpatient nurses’ views on self-management support.
Methods
Design
A qualitative approach with individual, semistructured interviews was chosen due
to the exploratory nature of the research and the need for in-depth knowledge
(Bryman, 2016) to
answer the research question: How do Norwegian rheumatology outpatient nurses’
express their approaches to self-management support?
Sample
Nurses working in two different rheumatology outpatient clinics in two Norwegian
hospital were invited to participate in this study to gather data on nurses’
self-management support within two different sociocultural contexts. There were
three inclusion criteria; the participants had to be fully qualified registered
nurses, they had to work in rheumatology outpatient care, and they had to work
directly with patients, as opposed to working only in administration or
leadership. To achieve symbolic representation (Ritchie, 2014) in terms of gender,
years working in rheumatology outpatient care, postgraduate nursing
qualifications, and types of consultations (nurse-led consultations or other
types), sampling was purposive and convenience based. Using these criteria, 14
nurses were eligible for inclusion. Nurses were informed that participating in
the study would be voluntarily, and that their statements would be treated and
presented in an anonymized way. Ten nurses agreed to be interviewed and the
interviews were conducted between March and September 2017. Both, due to the
explorative character of the study and the limited number of rheumatology nurses
practicing in Norway, a relatively small sample size were considered suitable
(Malterud et al.,
2015). The interviews were conducted by the first author, lasted
between 45 and 80 min, and took place in an undisturbed environment at the
participants’ workplace and during their work time. A semistructured interview
guide enabled a systematic exploration of how the nurses described to support
patients’ self-management, while facilitating the exploration of potentially
unknown issues (Bryman,
2016). The interview guide was based on one used in a study
investigating Dutch outpatient nurses’ views on both self-management and their
role in supporting self-management (Been-Dahmen et al., 2017) and adapted
to the Norwegian context by the authors. The second author is thoroughly
familiar with rheumatology services in Norway and the role of outpatient nurses
there. The term “self-management” was not translated into Norwegian both for
want of a one-word translation and because nurses displayed familiarity with the
term during the initial presentations of the project.
Ethics
This study followed the ethical principles for research involving human subjects
(WMA, 2013) and
the participants were given both oral and written information about the purpose
of the study. Participation was voluntary and no sensitive data were collected.
The Norwegian Centre for Research Data approved the study (58522).
Analysis
The analytical process was a systematic and reflective process where the
transferability and trustworthiness of the findings were ongoingly discussed
between the authors (Malterud, 2001). Interviews were recorded and transcribed verbatim
by the first author, facilitating in-depth, yet systematic analysis (Ritchie, 2014).
Overall thoughts and impressions about the interviews were recorded in field
notes and employed as an additional guide to inform the final analysis. The
interviews were read in their entirety between authors before employing the
coding-software NVIVO (QSR,
2017). NVIVO supported a systematic analysis of themes and patterns,
facilitating the tracing of analytical processes and iterative cycles (Ritchie, 2014). One
example for such iterative cycles was when authors read more work on relational
autonomy midway through the analytical process, as this contributed to an
understanding of the cardinal distinguishers between views represented in the
second and third approaches, respectively. Both authors are experienced in
conducting qualitative studies. The first author, who also conducted the
interviews and the initial stages of the analysis, was not familiar or had any
personal or professional relationships with any of the participants.
Results
Participants’ characteristics are presented in Table 1, showing that both male and female
nurses were interviewed, eight of 10 were nurse specialists, and they carried out
different types of consultations, such as independent nurse consultations as part of
nurse-led outpatient clinic care, helpline service consultation, and infusion
treatment unit consultations. The exact proportion is omitted for anonymity
purposes.
Participant Characteristics.Note. RN = registered nurse; NS = nurse specialist;
INC = independent nurse consultations; HS = helpline service
consultation; IT = infusion treatment.Our analysis suggests that nurses’ approaches of supporting patients’ self-management
ranged from being narrowly biomedically oriented to being person-centered. The
approaches were overlapping as illustrated in Figure 1.
Figure 1.
Nurses’ approaches to self-management support.
Nurses’ approaches to self-management support.In the narrowly biomedically orientated approach, nurses talked about self-management
as complying to professional advice and relying on education to provide
self-management support. The professional relationship was hierarchical with the
nurse as the expert. Trust was described as basis for “good rapport.” In the
biomedically but holistically oriented approach, the nurses talked about
self-management as managing life with a chronic illness. Their focus was to help
patients overcoming issues preventing “good” self-management. In addition to
educating patients on ways of self-management from a professional point of view,
they focused on developing patient motivation to achieve self-management. The
professional relationship was hierarchical while aiming for cooperation, and with
nurses emphasizing their role in establishing trust. Trust was considered a basis
for “good rapport” where patients’ needs had to be established. In the
person-centered approach, the nurses talked about self-management as a self-defined
process of living well with a chronic illness. Self-management support had a
biopsychosocial perspective, focusing on identifying and supporting patient-defined
self-management goals and processes. The nurse–patient relationship was described as
a supportive partnership between equals, focusing on building mutual trust, where
nurses had an active role in building patients’ self-efficacy. The approaches are
further discussed in the following sections.
The Narrowly Biomedically Orientated Approach
Some nurses proposed an approach to self-management that we interpreted as
narrowly biomedically orientated. “Good” self-management was described as a
consequence of patients’ understanding of the illness and its treatment.
Compliance was described as important in terms of patients adhering to both the
medical regimen and lifestyle behaviors recommended by professionals, as well as
monitoring symptoms and seeking professional help when necessary.
Self-management support was accordingly oriented toward educating patients on
issues such as pathophysiology, symptom recognition and management, medications’
side effects, and lifestyle changes. Exemplifying this, one nurse argued that
the most important aspect for “good” self-management was that patients adhered
to the medical treatment regimen, understood effects and side effects of their
medical treatments, and contacted the outpatient clinics when required.The most important thing regarding self-management is that they take their
medication. And that they understand the effects and side effects and
contact us when they need to.This perspective was not necessarily responsive to patients’ goals or their
varying circumstances and capabilities.The main focus during consultations tends to be on medical issues. Treatment,
side effects, that kind of thing. Although quite often they come with a
number of other questions, this and that. But I try to stick to what is to
do with the illness.Patients with needs beyond the biomedical regimen were referred to
self-management courses or their general practitioners. If education failed to
lead to progress toward “good” self-management, nurses repeated or modified
their educational efforts. Provided patients were sufficiently informed about
“good” self-management practices, and they were considered responsible for being
“good” self-managers. The nurse–patient relationship was described in a
hierarchical way and with clear boundaries avoiding a partnership. Nurses saw
themselves as experts who educate patients in how to manage their illness, its
treatment, and the consequences of that. Patients were expected to self-manage
as independently as possible and in accordance with professional
recommendations.The word partnership is problematic, because you may get too involved, and
help too much. You have to be careful that the patient does not become your
partner in a way. There has to be a professional boundary. Our job is to
teach patients to manage for themselves and not make them too dependent on
us.Although the nurses considered their relationship with patients as important, the
relationship was talked about in an instrumental way as to provide “good
rapport.” Nurses did not emphasize their role in establishing and maintaining
trust and cooperation and relied mainly on more or better information to support
patients’ self-management.We inform them a lot, often repeatedly. But if they don't want to follow our
recommendations and get worse… All we can do is to facilitate by informing
them well. In the end it is their responsibility. They determine how they
want to live their life.
The Biomedically and Holistically Oriented Approach
Some nurses advocated an approach that we interpreted as more holistic and
individually tailored type of self-management support than a narrowly
biomedically oriented approach.You need to develop a biopsychosocial understanding of the patient’s
situation.Here, self-management was presented as being more than managing the illness and
its consequences. Emphasis was placed on patients’ ability to live a “good” life
with a chronic illness. Biomedically defined ways of “good” self-management were
considered important, yet self-management was also seen to be affected by
individual capabilities and life circumstances.Self-management is, of course, about patients taking their medication to have
the best possible health to start with. But it's more than that. You have to
learn how to live your life!This approach went beyond educating patients. Nurses’ role was portrayed to be
about supporting patients’ identifying and addressing issues concerning
intrinsic motivation, self-efficacy, social relations, setting goals and
priorities.The most important thing is that patients take their medication and follow
their treatment, but you also need to encourage them to think a little
further than just their illness, help them to see what they have both in
themselves and around them. That allows them to make the necessary
changes.The professional relationship advocated here emphasized that establishing and
maintaining trust was important in order to facilitate an ongoing dialogue for
patients’ ability to self-manage. Although nurses advocated supporting patients
to “work on” a broader range of areas than those advocating a narrowly
biomedical approach, the nurse–patient relationship remained hierarchical.We are not partners, but we have to work as a team and find out about stuff
together in order to know what they need most in terms of our support.Self-management support remained conditional to patients aligning their practice
to professional understandings of “good” self-management. Thus, while
emphasizing a stronger relational focus in self-management support and proposing
that patients may require support in negotiating issues affecting
self-management, self-management support nevertheless aimed toward
professionally defined goals. Interestingly, only nurses proposing this approach
expressed frustration or giving up on patients when facing ongoing
noncompliance.It's their life. They need to do it themselves. (…) It can be challenging
when patients are dead scared of side effects. (…) I had to say to one
patient: “If you don't want the treatment we offer, we are forced to
discharge you.” (…) Those kinds of patients challenge me! What happens to
your body if you don't get the treatment?
The Person-Centered Approach
Some nurses proposed an approach to self-management that we interpreted as
person-centered.It's about how a patient manages to live life with a chronic illness. And
there are many ways of doing that. They need to find their own ways to have
the best possible life for themselves.Here, nurses argue for a need to establish an understanding of patients’
individual starting points and focusing on identifying ways to support patients
in their self-management that are aligned with patients’ capabilities,
motivations, challenges, and importantly, patients’ understandings of both “good
health” and a “good life.”Self-management has to do with the patient's understanding of his
health-related challenges and his ability to tackle them so that he can
experience health and well-being, whatever that may be.While working against the backdrop of knowledge about biomedically viewed “good”
self-management leading to biomedically viewed “good” health, nurses expressed
open-mindedness about how self-management may be realized in practice. The goal
was not necessarily for patients to become as independent from self-management
support as possible, but for patients to be able to live well with their chronic
illness.Much of their ability to self-manage depends on how much else, besides their
illness, they may have to deal with. And many have to deal with quite a lot.
So, you need to support them holistically and tailored to their situation,
because all sorts of things may affect how they are coping.Nurses proposing this approach argued for a nonhierarchical and collaborative
nurse–patient relationship, with patients as equal partners assured of
professional continued support when needed and/or desired.I see myself as a helper and not as somebody telling anybody off. It's
important that they get the impression that we are there for them no matter
what. (…) They may know more about their illness than we do, which is really
good, because then they can ask questions. Then we can find out about them
and take it from there.The appropriate degree and type of support was seen as dependent on patients’
needs and understandings. Mutual trust between the nurse and patient was
considered central in self-management support. Nurses proposing this approach
expressed greater awareness of barriers to establishing trust, such as power
imbalances and emphasized more strongly their own role in establishing and
maintaining trust.Patients have the lead role. My job is to help them to get behind the
steering wheel if they aren't there already and to support them along the
way.
Discussion
Continuing Dominance of the Biomedical Paradigm
Nurses in this study did not consistently describe self-management support in
ways that are aligned with the core dimensions of person-centered practice; a
subjective and holistic understanding of patients’ self-management, a
collaborative partnership between equal partners in care (Ekman et al., 2011; Entwistle & Watt,
2013; Dwamena et al., 2012; Bech et al., 2020; Voshaar et al., 2015; Zangi et al., 2015),
and a professional relationship where patients are considered moral agents with
the power to define both goals and priorities with regard to self-management
support (Entwistle et al.,
2018). Nurses in this study described different understandings of
“good” self-management support, ranging from narrowly biomedically oriented to
person-centered understandings. These findings are in line with other studies
finding varying understandings amongst nurses around self-management along the
biomedially oriented—person-centered continuum (Dwarswaard & van de Bovenkamp,
2015). While some nurses described more clearly demarcated
biomedically oriented understandings and person-centered understandings
respectively, others described understandings that incorporated aspects of both
biomedically oriented understandings and person-centered understandings of
self-management support. Interestingly, it was the latter nurses that
problematized nonadherence most strongly arguing this may jeopardize good health
outcomes. As discussed later, we suggest this may be a consequence of their
underlying understanding of autonomy.Considering that research suggests that person-centered self-management support
is more evident in rhetoric than in practice (Morgan et al., 2017) and may be
associated with a “socially desirable response” phenomenon, it can be assumed
that responses are skewed toward a person-centered rhetoric. This further
strengthens our interpretation of the results not suggesting a successful
transition toward person-centered self-management support practices amongst
rheumatology outpatient clinic nurses in Norway.Indeed, nurses in this study considered their practice as person-centered,
emphasizing at least elements of person-centered practice. Nurses who propose a
type of support that we coined biomedically and holistically oriented aimed to
understand patients’ rationales, intrinsic motivations, and subjective
experiences of living with a chronic illness, and life circumstances (Berglund et al., 2015;
Kendall et al.,
2011). Patients’ intrinsic processes are seen to lie behind
challenges with their self-management (Dures et al., 2016; van Hooft et al.,
2015). The aim is to establish a dialogue creating opportunities for
patients to reflect on established understandings, behavioral patterns and goals
to promote their “health” (Anderson & Funnell, 2005; Dures et al., 2016). However, nurses
with this view contradicted person-centered principles in that the nurse–patient
relationship remains hierarchal with nurses being experts who support patients
in working toward biomedically defined goals. Nurses with this view saw their
role as both educators and motivators with patients needing guidance toward
“good” (in a biomedically or professionally defined sense) self-management. As
such, patients were not fully acknowledged as moral agents (Entwistle et al.,
2018). Self-management is framed by patients’ ideas of a good life, but
also influenced by framing conditions outside the patient's domain (van de Bovenkamp &
Dwarswaard, 2017). Nurses and patients negotiate self-management on
the boundaries between patients’ autonomy and patients’ realities on the one
hand and truth around goals and ways of self-management proposed within health
care settings on the other hand.In this study, only nurses proposing a holistically oriented approach expressed
frustration when patients over time failed to comply with biomedically defined
“good” self-management. A recent study found that nurses’ perception of success
may be influenced by how they understand their professional role in
self-management support (Duprez et al., 2020). Some nurses kept patients on track and
established a rather directive approach while others considered their role as
being more comprehensive. The expressed frustration among the nurses in this
study can be understood as the result of them on the one hand “investing” more
effort into self-management support than nurses arguing for what we coined
narrowly biomedically orientated approach, while on the other hand not relenting
definitional power of “good” self-management as evident with nurses with a
person-centered approach.
The Need for Reflexivity Around Person-Centered Practice
Others argue that formal education is vital for realizing person-centered
self-management support, since nurses need to acquire the necessary knowledge,
skills and attitudes to translate theory into practice (Been-Dahmen et al., 2017; Dures et al., 2014,
2016). An
interesting reflection is therefore that in this study nurses without
postgraduate education where only represented amongst those proposing a narrowly
biomedically oriented approach. However, formal education is not sufficient as a
cognitive basis for person-centered self-management practice. Nurses operate in
environments imbued with implicit and explicit beliefs about what constitutes
“good” self-management support practice and need support in developing reflexive
understandings about such beliefs in relation to their own practice, as they
otherwise may assume to act in a person-centered way when this may not be the
case (Ekman et al.,
2011; Wilson et
al., 2006).Nurses may also find it difficult to translate person-centered understandings
into practice since they experience ethical dilemmas. One such dilemma is
patient autonomy versus optimal medical outcomes where patient autonomy may
hinder compliance. Others have also found that nurses’ biomedically oriented
understandings of self-management frame interpretations of noncompliance as
challenging, because in this case noncompliance conflicts with a perception of
good self-management (Dwarswaard & van de Bovenkamp, 2015).Such dilemmas point toward that various discourses and belief systems coexist and
need to be negotiated when translating person-centered beliefs into practice.
Kendall et al.
(2011) argue for example that dominant discourses pertaining both
rationalistic, behavioristic assumptions, and an assumed superiority of
biomedical knowledge over lay knowledge prevent person-centered self-management
support.These discourses are especially evident amongst nurses proposing a narrowly
biomedically orientated approach suggesting that provided patients were informed
sufficiently and ought to make the “right” choices. Nurses proposing a
biomedically and holistically oriented approach acknowledged both the structural
factors that may affect individuals’ varying abilities to self-manage and the
need to support patients by strengthening their capabilities. Yet, their
understandings of “good” self-management remain biomedically defined. Only some
nurses propose ongoing support regardless of patients’ courses of action. This
allowed them to acknowledge patients as moral agents while supporting their
self-management in a person-centered way (Entwistle et al., 2018). It is
ultimately this aspect that makes the kind of support proposed by these nurses
person-centered.
The Centrality of Autonomy and Power
Others have argued for how vital it is to reflect around issues of both autonomy
and power to realize person-centered self-management support (Entwistle et al.,
2018). Understanding autonomy as a relational concept dissolves the
supposed contradiction between patients self-managing on the one hand and
receiving ongoing support to self-manage on the other hand (Elissen et al., 2013).
Instead, patients and health care professionals can collaborate on defining the
goals and priorities for self-management support. Both individual capabilities
and autonomy are socially constructed and relationally bound. Being dependent on
others’ help does not necessarily contradict autonomy, but can, in fact, promote
autonomy and patients’ agency (Entwistle et al., 2018). Nurses
proposing a narrowly biomedically orientated approach understood patient
autonomy as a choice to not follow professional advice. Empowerment was
conceptualized narrowly as enabling patients to appropriately follow
professional advice through educating them. This approach fails to acknowledge
both the potentially constitutive role of nurse–patient relationships for the
development of patient autonomy, and the need to transfer power to the patient
in order to promote self-management. In contrast, the conceptualization of
autonomy within the biomedically and holistically oriented approach was
conflicted. Autonomy was understood as socially constructed and relationally
bound, in the sense that patients’ capabilities to self-manage were shaped by
various aspects in their lives, including the social relations they were part
of. Nurses saw themselves as supporting patients in developing self-management
capabilities. Nevertheless, they employed an individualistic understanding of
autonomy when rationalizing noncompliance or other ways of “failing” to
self-manage according to biomedically defined norms. Self-management support
remained thus effectively conditional on patients’ commitment to biomedically
defined health goals, thus undermining both patient autonomy and empowerment,
and ultimately patients’ capabilities to self-manage with a focus on quality of
life (Entwistle et al.,
2018). Consequently, nurses found it challenging when patients failed
to self-manage according to biomedically defined norms. According to Wilkinson et al.
(2016) conflict emerges when nurses meet noncompliance in relation to
biomedical norms, while aiming for holistic and person-oriented nursing
practice. In contrast, nurses with the narrowly biomedically orientated approach
avoided this conflict by employing a rational choice model and by considering
their role in self-management support as predominantly educational.Nurses proposing a person-centered approach did not assume that self-management
support needed to be targeted toward biomedically defined goals, thus not
experiencing such a conflict. They presented their support as ongoing, holistic,
and as a collaboration between equals (Entwistle & Watt, 2013; Entwistle et al.,
2018), thus rendering only this approach properly person-centered (Entwistle & Watt,
2013).
The Need for a System-Level Perspective
Although this study focused on nurses’ views on self-management support instead
of structural conditions for self-management support practice, it is important
to emphasize that for nurses to translate person-centered theory into practice
it is necessary but not sufficient that they are reflexive around their
assumptions on self-management support and that they receive appropriate
education. Instead, nurses’ self-management support practice is shaped by
structural manifestations of an ongoing dominant biomedical paradigm, for
example barriers to continuity of care (Berglund et al., 2015), biomedically
based definitions of nurses’ roles or tasks (Goh et al., 2006) and limited clinical
autonomy (Farrell et al.,
2017). These realities may hinder or promote person-centered
self-management support (Entwistle et al., 2018; Kendall et al., 2011; Morgan et al., 2017;
Wilkinson &
Whitehead, 2009; Wilson et al., 2006). For example, Essén and Oborn (2017) found that the
use of numerically based treatment progress and targets in a Swedish
rheumatology enabled the physicians to identify which patient experiences
physicians needed to pay attention to. Physicians’ attention was directed to
disease dimensions and predictors while patients wanted to speak about their
overall feelings, sleep patterns, or other nonmeasurable dimensions. Arguably,
such assessment systems affect over time the prioritizations, attitudes, and
understandings of health care personnel. It is in this way that for example
treatment targets, assessment systems, or budget decisions may affect cultures
and thus nurses’ understandings of self-management support and at the same time
their ability to translate their understandings into practice. McCormack et al. 2015
argue that a successful transition toward person-centered practice requires
dominant discourses to move beyond person-centered “care” and toward
person-centered “cultures.” Person-centered self-management support can only
emerge from within person-centered cultures, where nurses can both experience
and practice person-centeredness.
Strengths and Limitations
A strength of this study is that this is, to the best of our knowledge, the first
study exploring how Norwegian rheumatology outpatient nurses describe to provide
self-management support. Another strength is associated with the researchers’
backgrounds, as they have different academic perspectives and nursing
experience. One has a PhD in sociology and works as a nurse in community care
nursing; the other has a PhD in nursing, as well as many years of clinical
experience from the field of rheumatology nursing. These differences can help
prevent that both the research process in general and the analytical process
become based around taken for granted disciplinary based assumptions.A noteworthy limitation is that the study recruited rheumatology nurses from only
two outpatient clinics in Norway. Considering that different rheumatology
departments in Norway may organize patient care differently, nurses working in
other rheumatology departments could have diverging views from those taking part
in this study. However, since the sample included nurses with different levels
of clinical experience, different formal nursing qualifications and engaged in
type of consultations, sufficient heterogeneity of views within the sample is
thought to be achieved.
Implications for Practice
If nurses are expected to realize goals toward person-centered self-management
support, they may need support in developing reflexivity on self-management
support practice and in addressing structural barriers to being able to practice
person-centered self-management support. Structural aspects at various levels of
health care systems may also hinder nurses from translating person-centered
understandings into practice. In order to translate person-centered
self-management support in real practice, nurses and patients should talk about
what they consider as good self-management support and the ethical dilemmas that
different views may involve (Dwarswaard & van de Bovenkamp,
2015). Discussing ethical dilemmas may contribute to a better
understanding about the implications of making different decisions about how
patients can self-manage their disease and how the nurses can provide the
individual patient with support so the patients values and preference about
“what constitutes the good life” is considered.
Conclusion
Against the backdrop of a broad consensus that a person-centered self-management
support practice supports patients with chronic diseases more effectively in their
self-management, this study explored how Norwegian rheumatology outpatient nurses
describe their approach to self-management support. The findings do not suggest a
successful transition toward person-centered self-management support, and the
biomedical paradigm instead continues to influence Norwegian rheumatology outpatient
clinic nurses’ approach to self-management support. Further research is needed to
validate these findings and to develop a better understanding of the underlying
factors for diverging views on self-management support. If nurses are expected to
realize goals toward person-centered self-management support, they may need support
in developing reflexivity on self-management support practice and in addressing
structural barriers to being able to practice person-centered self-management
support. Structural aspects at various level of health care systems may also hinder
nurses from translating person-centered understandings into practice.
Authors: Francesca Dwamena; Margaret Holmes-Rovner; Carolyn M Gaulden; Sarah Jorgenson; Gelareh Sadigh; Alla Sikorskii; Simon Lewin; Robert C Smith; John Coffey; Adesuwa Olomu Journal: Cochrane Database Syst Rev Date: 2012-12-12
Authors: Urmimala Sarkar; John D Piette; Ralph Gonzales; Daniel Lessler; Lisa D Chew; Brendan Reilly; Jolene Johnson; Melanie Brunt; Jennifer Huang; Marsha Regenstein; Dean Schillinger Journal: Patient Educ Couns Date: 2007-11-07
Authors: Susanne M van Hooft; Jolanda Dwarswaard; Susan Jedeloo; Roland Bal; AnneLoes van Staa Journal: Int J Nurs Stud Date: 2014-07-18 Impact factor: 5.837