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Objectives Self-management is a concept frequently used within healthcare but lacks consensus. It is the aim of this study to clarify the concept. Design Concept analysis according to Walker and Avant, comprises eight steps: select concept, determine purpose, identify uses, determine defining attributes, identify model case, identify additional cases, identify antecedents and consequences and define empirical referents. Sources used: PubMed, Scopus and Web of Science. Results Ten attributes delineating the concept have been identified and organised into three groups. Group (a): person-oriented attributes: the person must (1) actively take part in the care process, (2) take responsibility for the care process and (3) have a positive way of coping with adversity. Group (b): person-environment-oriented attributes: (4) the person must be informed about the condition, disease and treatment and self-management, (5) should be individualised, which entails expressing needs, values and priorities, (6) requires openness to ensure a reciprocal partnership with healthcare providers and (7) demands openness to social support. Finally, Group (c): summarising attributes: self-management (8) is a lifetime task, (9) assumes personal skills and (10) encompasses the medical, role and emotional management. Conclusions The findings of this study recognise the complexity of the concept, but also show the need for further investigation to make the concept more measurable. Clarity about the concept will enhance understanding and facilitate implementation in self-management programmes for chronic conditions.
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Van de VeldeD, etal. BMJ Open 2019;9:e027775. doi:10.1136/bmjopen-2018-027775
Open access
Delineating the concept of
self-management in chronic conditions:
a concept analysis
Dominique Van de Velde, 1,2 Freya De Zutter,1 Ton Satink,3 Ursula Costa,4
Sara Janquart,1 Daniela Senn,5 Patricia De Vriendt 1,2,6
To cite: Van de VeldeD,
De ZutterF, SatinkT, etal.
Delineating the concept
of self-management in
chronic conditions: a
concept analysis. BMJ Open
2019;9:e027775. doi:10.1136/
bmjopen-2018-027775
Prepublication history and
additional material for this
paper are available online. To
view these les, please visit
the journal online (http:// dx. doi.
org/ 10. 1136/ bmjopen- 2018-
027775).
DVDV and FDZ contributed
equally.
Received 9 November 2018
Revised 13 May 2019
Accepted 3 June 2019
For numbered afliations see
end of article.
Correspondence to
Prof. Dr.DominiqueVan de
Velde;
dominique. vandevelde@ ugent.
be
Research
© Author(s) (or their
employer(s)) 2019. Re-use
permitted under CC BY-NC. No
commercial re-use. See rights
and permissions. Published by
BMJ.
ABSTRACT
Objectives Self-management is a concept frequently
used within healthcare but lacks consensus. It is the aim
of this study to clarify the concept.
Design Concept analysis according to Walker and Avant,
comprises eight steps: select concept, determine purpose,
identify uses, determine dening attributes, identify model
case, identify additional cases, identify antecedents and
consequences and dene empirical referents. Sources
used: PubMed, Scopus and Web of Science.
Results Ten attributes delineating the concept have been
identied and organised into three groups. Group (a):
person-oriented attributes: the person must (1) actively
take part in the care process, (2) take responsibility for
the care process and (3) have a positive way of coping
with adversity. Group (b): person-environment-oriented
attributes: (4) the person must be informed about the
condition, disease and treatment and self-management, (5)
should be individualised, which entails expressing needs,
values and priorities, (6) requires openness to ensure a
reciprocal partnership with healthcare providers and (7)
demands openness to social support. Finally, Group (c):
summarising attributes: self-management (8) is a lifetime
task, (9) assumes personal skills and (10) encompasses
the medical, role and emotional management.
Conclusions The ndings of this study recognise the
complexity of the concept, but also show the need
for further investigation to make the concept more
measurable. Clarity about the concept will enhance
understanding and facilitate implementation in self-
management programmes for chronic conditions.
INTRODUCTION
To date, the discourse on defining health is
shifting from the current static WHO defi-
nition health is a state of complete physical,
mental and social well-being and not merely
the absence of disease or infirmity’1 towards
a more dynamic definition, in which health is
defined as ‘the ability to adapt to one’s envi-
ronment’.2 Researchers and scholars have
elaborated further on this conceptual idea and
propose incorporating the concept of self-man-
agement in the definition: health is ‘the ability
to adapt and self-manage in the face of social,
physical, and emotional challenges’.3 The main
argument for this transition is because of the
demographic and epidemiological evolution
characterised by an increase in non-communi-
cable diseases within the context of multimor-
bidity.4–7 As a consequence, besides attempting
to cure the disease, healthcare delivery shifts
towards empowering patients to self-manage
the consequences of their condition.3
In this regard, interventions for self-man-
agement are increasingly implemented in
healthcare delivery for people with chronic
conditions. Based on the results of a system-
atic review by Panagioti et al,8 it is shown that
interventions directed towards self-manage-
ment significantly improve health outcomes,
resulting in a reduction in healthcare utilisa-
tion in association with decreases in health.8
As a consequence of growing evidence, it can
be agreed that there are indeed arguments in
favour of changing towards a more dynamic
definition of health in which self-manage-
ment is a key concept.
Strengths and limitations of this study
With this study, we suggest that the concept of
self-management should be researched in great-
er depth before it can be used as a key aspect of
health.
The study enhances the understanding of the con-
cept of self-management, offers opportunities for
measuring it and provides a strong basis for devel-
oping self-management programmes.
While a concept analysis explores current perspec-
tives, a consequence is that the current ndings
could change within a few years depending on the
new knowledge that emerges from new insights.
A limitation of a concept analysis is the non-random
sampling method, meaning that there might be a
selection bias.
This resulted in a contemporary image of self-man-
agement based on saturation of the data and not on
a comprehensive overview of all relevant articles as
could have been the case in, for instance, a system-
atic review.
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However, there is no consensus on the meaning of
self-management. The ambiguity of the concept is shown
by the sheer number of randomised controlled trials of
self-management interventions for chronic diseases. In
these studies, self-management has been operationalised
in different ways and types of interventions, ranging
from education programmes to shared goal-setting
programmes, tailored physical activity programmes or
fitness programmes, behavioural skills training, activi-
ty-oriented programmes and comprehensive programmes
combining different features.9–17 Each of these features
reported in the studies may well enhance the ability
for patients to undertake better management of their
chronic illnesses. However, there is no rationale in terms
of whether these programmes should meet certain
criteria to be considered effective in fostering self-man-
agement behaviour. In addition, different definitions of
the concept and different outcome measures have been
used in these studies, such as self-efficacy, health-related
quality of life, functional capacity, activity participation,
performance of activities in daily living, illness cogni-
tion, work absenteeism, depression, self-confidence and
fatigue.11–22 Only two studies report having measured
self-management behaviours.23 24 It is therefore difficult
to compare the interventions and results.
This apparent ambiguity regarding the concept of
self-management impedes the efforts of researchers and
practitioners to implement and measure the concept
in programmes and interventions. Jonkman et al25 and
Pearce et al26 declared that a lack of taxonomy and a
further subdivision of the aspects of self-management
hinders our general understanding of what it means and
entails. In view of the numerous publications and the
variety of descriptions of self-management, there is an
urgent need for uniformity with regard to the concept.
From this perspective, there is also a lack of evident value
in incorporating self-management into any new health
definition.
With this study, we hope to address this shortcoming
and suggest that the concept of self-management should
be researched in greater depth before it can be used as a
key aspect of health. In addition, a clearer definition of the
concept of self-management will also support the devel-
opment of self-management intervention programmes
for use in chronic conditions and multimorbidity, as well
as the development of self-management measurements.
The main aim of this study is to explore the existing
ambiguity concerning the concept ‘self-management’
by delineating the concept itself and defining an oper-
ational definition for use in healthcare. Clarity on the
concept will enhance understanding and facilitate the
implementation of self-management programmes for
chronic conditions.
METHODS
The eight-step concept analysis of Walker and Avant27 was
performed to investigate the concept, as follows: (a) select
a concept, (b) determine the aims or purposes of analysis,
(c) identify the use of the concept and select the literature,
(d) determine the defining attributes, (e) identify a model
case, (f) identify additional cases, (g) identify antecedents
and consequences and (h) define empirical referents.
These eight steps are presented chronologically, but in
reality, they were undertaken in an iterative manner.
Step 1: select the concept
This step derived from a joint international project
(JIP) on ‘health promotion and self-management’
between partners from Ghent University (Belgium),
HAN University of Applied Sciences (the Netherlands),
the Metropolia University of Applied Science (Finland),
the Health University of Applied Sciences (Austria), the
School of Nursing Portuguese Red Cross Oliveira de
Azeméis (Portugal), Artevelde University College Ghent
(Belgium), University College Absalon (Denmark), FH
Joanneum University of Applied Science (Austria), the
National Sports Academy (Bulgaria), Brunel University
London (UK), FH Campus Wien University of Applied
Science (Austria), Zurich University of Applied Science
(Switzerland) and the School of Health Technology
Lisbon (Portugal). The JIP is a multidisciplinary project
involving students, researchers and lecturers working
in collaboration on research and educational projects
in health promotion and self-management. The expert
discussions within this JIP over the past 5 years revealed,
as in the literature, the lack of clarity about the concept
of self-management.
Step 2: determine the aims and purposes of the analysis
Discussions within the JIP highlighted the need for an
in-depth analysis to reach consensus about the concept,
to determine what is attributed to the concept, and conse-
quently to create clarity by eliminating ambiguity.
Step 3: identify all uses of the concept
The possibilities and contexts in which self-management
can be understood are very broad and include computer
science, business, human resources, economics, educa-
tion, psychology, sports, cultural work and healthcare.28
However, the scope of this study was solely self-manage-
ment, as it is implemented and applied in healthcare and
retrievable from the healthcare literature.
The search (January 2018–February 2018) started by
entering the following keywords in PubMed, Scopus and
Web of Science: ‘self-management’, ‘chronic disease’ and
‘healthcare’. The search strings for the different data-
bases are given in online supplementary file 1. The first
selection was made and articles with the term self-man-
agement in the title or in the keywords were withheld.
After this selection, articles were included if the article
(a) discussed the theoretical or conceptual foundations
of self-management, (b) were healthcare related, (c) were
written in English and (d) had the full-text available. Arti-
cles solely focussing on the application of self-manage-
ment programmes and self-management interventions
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without a theoretical support were excluded. Two
researchers (FDZ, SJ) independently selected the arti-
cles based on the above inclusion and exclusion criteria
(March–April 2018).
The process of saturation was characterised by two
main features: triangulation of (a) resources and (b)
researchers. Regarding the resources, three different
databases were used and the references in the selected
articles were checked which led to additional articles that
we also analysed. Articles including new knowledge were
added to the data for further analysis; articles concerning
previously reported information were withheld, but only
to confirm the information provided. Regarding the trian-
gulation of the researchers, after the first author and the
last author, all other authors in this project were asked to
critically read the gathered information and see whether
possible published information was missing. When infor-
mation was missing, they were asked to forward articles.
This process was characterised by the iterative process of
adding new knowledge and information until saturation
was reached. Peer debriefing with the entire research
group and a final consensus meeting led to an agreement
of saturation (June 2018).
Step 4: determine the dening attributes
Attributes are considered an unequivocal feature of
the concept. A systematic and purposeful approach was
applied to discover the defining attributes, antecedents
and consequences by: (a) reading the selected articles,
(b) identifying the characteristics designated for self-man-
agement, (c) placing frequently occurring characteristics
into a coding scheme, (d) grouping these characteristics
and classifying them into categories, (e) discussing the
categories and underlying characteristics with experts
and (f) renaming the categories as attributes.
Step 5: identify a model case
A model case representing all attributes was identified
by the second author based on real-life experiences of
working with patients with a chronic condition, and was
developed as a narrative to illustrate how self-manage-
ment could be conceptualised. This case is supplemented
with an overview of the attributes represented.
Step 6: identify additional cases
In addition, borderline and contrary cases were sought
and corresponding narratives were written. These addi-
tional cases mitigate judgements about including and
excluding certain attributes. These cases differ from
the model case because they do not include all of the
attributes and/or differ in one of them, such as length
of time or intensity of occurrence. An overview is also
given with those attributes that are represented and
lacking. In describing a contrary case, an example of
a specific case in the study by Bodenheimer et al was
used to give a clear example of what does not reflect
self-management.29
Step 7: identify antecedents and consequences
Antecedents are events or attributes that must arise prior
to a concept’s occurrence. For instance, if pain is the
concept under investigation, an antecedent could be
a fall. The consequences are those events or incidents
that can arise as a result of the occurrence. For instance,
regarding the concept pain, a consequence could be a
fear of falling. The antecedents and consequences were
discussed with all authors to reach a consensus. This
phase was started at the same time as step 4, but was an
ongoing phase.
Step 8: dene empirical referents
Ultimately, empirical referents were determined for each
of the defined attributes to make the concept measurable
in a more uniform way.
RESULTS
For clarity, the presentation of results in this paper is also
organised according to the eight steps. However, the main
result starts from step 4: defining the attributes. Steps 1–3
are clustered into one paragraph and show the literature
on which the concept analysis was based.
Steps 1–3
Screening the titles and keywords of the articles initially
yielded 128 articles, of which 118 did not meet the inclu-
sion and exclusion criteria. The remaining 10 articles
were used as a starting point; based on the triangulation
of resources, 23 articles were added to the list while 2 arti-
cles were added based on the triangulation of researchers
(figure 1). This finally resulted in 35 articles (table 1).
These articles were used to describe the attributes of
self-management and were subdivided into three groups:
articles about self-management in general (n=9), articles
in which self-management was linked to chronic condi-
tions and diseases (n=13) and articles in which self-man-
agement was diagnosis-specific (n=13). The analysis of
these 35 articles was grounded on different points of
views (ie, stakeholder, therapist and patient) and based
on research from different countries. The average popu-
lation consisted of white, middle-class patients from the
following countries: the USA (n=14), Canada (n=9),
the UK (n=6), Australia (n=3), the Netherlands (n=2),
Sweden (n=2), Iran (n=1) and South Africa (n=1).
Step 4: attributes
These attributes are the result of an in-depth analysis of
the different articles. Each of the attributes are the result
from analysing the content of the articles in codes and
categories. Online supplementary file 2 gives an over-
view of the categories and the accompanying codes with
the referenced article to show the rigour of the study.
To improve the readability of the findings, the different
attributes are organised in: (1) person-oriented attri-
butes, (2) person-environment-oriented attributes and
(3) summarising attributes. It needs, however, some
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attention, as none of the attributes can be considered as
stand-alone items and should be seen in conjunction with
all other attributes. Table 2 shows a total of 10 attributes,
which are further described separately.
Person-oriented attributes
Attribute 1: the person must actively take part in the care process
The main aspect here is that the patient is also expected
to actively participate in the care process.30–32 In under-
taking self-management, a patient cannot be passive.33 34
Self-management implies increased active patient engage-
ment, wherein an active attitude regarding treatment plan-
ning and management of health issues is required.8 33 35–38
Ellis et al37 consider that ‘being proactive’ can be viewed
as a characteristic of a social citizen, which goes a step
further than ‘being active’, given the preventive nature
of the prefix ‘pro’. In addition, Packer32 explained
that self-management is gained through conscious and
planned engagement.
Attribute 2: the person must take responsibility for the care
process
This attribute is closely linked to the preceding attribute,
but there is a subtle difference. The key message of this
attribute is that the patient has to be active, and must
take responsibility for the care, regardless whether or
not there is a social network of family, friends and other
proxies on whom the patient can rely or can consult with
trust. Lorig and Holman34 state that the patient is the only
actor within the care process who can be responsible for
day-to-day care. This personal responsibility of the patient
is also acknowledged by Edworthy39 and Ellis et al.37 The
latter researchers termed an individual’s responsibility
‘self-governance’ and identified it as a characteristic of
a ‘remoralised’ social citizen. In contrast, Bodenheimer
et al33 delineate self-management a shared responsibility
for making and carrying out health-related decisions. The
latter shows the importance of the ability to collaborate
and rely on others and is described in attributes 6 and 7.
Attribute 3: the person has a positive way of coping with adversity
Persons with a chronic condition have to deal with
emotions such as anger and frustration. Different authors
argue that self-management is difficult when a person
does not accept the disease and does not have a feeling
of control about the situation. Omisakin and Ncama28
describe ‘self-help’ as a way of coping with adversity, which
refers to the ability to care for oneself to assure one’s own
health and well-being and is endorsed by Ellis et al.37 This
proposition implies the individual responsibility of the
person mentioned in relation to attribute 3 mentioned
above. When a person has a positive way of coping with
adversity, others are more easily induced to acknowledge
the responsibility of the person and expect the person to
act as autonomously as possible.37 This means that patients
are acknowledged in making decisions about their own
health issues, with or without help from proxies and
important others, and possibly with professional input.
However, the patient is first and foremost self-reliant in
making decisions, or should at least be informed about
the different possibilities.28 In contemporary discourse,
being autonomous is a moral obligation on the part of
the patient towards society because autonomous patients
do not use the welfare state inappropriately.37
Person-environment-oriented attributes
Attribute 4: the person must be informed about the condition,
disease and treatment
A person cannot take responsibility and take action,
unless he is correctly informed about his health condi-
tion and the possible consequences. Packer40 highlights
that knowledge needs to be underpinned by information,
confidence and support to achieve self-management.
Indeed, several authors are convinced of the importance
Figure 1 Flow chart demonstrating the search strategy, triangulation and saturation process.
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Table 1 Selected articles used for dening the attributes
No. Year Author(s) Title
Unique papers identied based on title and keywords
1 1991 Clark, Becker, Janz, Lorig, Rawkowski, and
Anderson
Self-management of chronic disease by older adults: a review
and questions for research
2 2002 Barlow, Wright, Sheasby, Turner, and
Hainsworth
Self-management approaches for people with chronic conditions:
a review
3 2003 Lorig and Holman Self-management education: history, denition, outcomes and
mechanisms
4 2011 Packer An occupation-focused approach to self-management
5 2011 Richard, and Shea Delineation of self-care and associated concepts
6 2012 Schulman-Green, Jaser, Martin, Alonzo,
Grey, McCorkle, Redeker, Reynolds, and
Whittemore
Processes of self-management in chronic illness
7 2015 Boger, Ellis, Latter, Foster, Kennedy, Jones,
Fenerty, and Demain
Self-management and self-management support outcomes: a
systematic review and mixed research synthesis of stakeholders
views
8 2015 Miller, Lasiter, Ellis, and Buelow Chronic disease self-management a hybrid concept analysis
9 2016 Audulv, Packer, Hutchinson, Roger, and
Kephart
Concept analysis—coping, adapting or self-managing: what’s the
difference? A concept review based on the neurological literature
10 2017 Ellis, Boger, Latter, Kennedy, Jones, Foster,
and Demain
Conceptualisation of the ‘good’ self-manager: a qualitative
investigation of stakeholder views on the self-management of
long-term health conditions
Included articles based on triangulation of resources
11 1995 Clement Diabetes self-management education
12 1999 Lorig, Sobel, Stewart, Brown, Bandura,
Ritter, Gonzalez, Laurent, and Holman
Evidence suggesting that chronic disease self-management
can improve health status while reducing hospitalisation: a
randomised trial
13 1999 Alderson, Starr, Gow, and Moreland The programme for rheumatic independent self-management: a
pilot evaluation
14 2000 Edworthy How important is patient self-management?
15 2000 Barlow, Turner, and Wright A randomised controlled study of arthritis self-management
programme in the UK
16 2001 Lorig, Sobel, Ritter, Laurent, and Hobbs Effect of a self-management programme on patients with chronic
disease
17 2001 Norris, Engelgau, and Narayan Effectiveness of self-management training in type 2 diabetes
18 2002 Bodenheimer, Lorig, Holman and Grumbach Patient self-management of chronic disease in primary care
19 2004 van de Wiel and Weijmar Schultz Self-management: a new paradigm in patient education
20 2005 Bodenheimer, MacGregor, and Shari Helping patients manage their chronic conditions
21 2006 Newbould, Taylor, and Bury Lay-led self-management in chronic illness: a review of the
evidence
22 2007 Bayliss, Ellis, and Steiner Barriers to self-management and quality of life outcomes in
seniors with multimorbidities
23 2010 Girdler, Boldy, Dhaliwal, Crowley, and
Packer
Vision self-management for older adults: a randomised controlled
trial
24 2011 Omisakin, and Ncama Self, self-care and self-management concepts: implications for
self-management education
25 2011 Lawn, McMillan, and Pulvirenti Chronic condition self-management: expectations of
responsibility
26 2012 Ghahari, and Packer Effectiveness of online and face-to-face fatigue self-management
programmes for adults with neurological conditions
Continued
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of the attribute ‘knowledge’ to execute good self-man-
agement.31 32 37 39 41–44 This specific attribute includes
obtaining and developing knowledge about the condi-
tion, disease and treatment, specifically to be informed
as a patient.33 39 41 42 45–49 It also includes understanding
of one’s own life circumstances.41 Knowledge can be
attained by gaining access to resources, and community
and support services.8 41 42 44 47 50 51
Attribute 5: self-management is individually dened and entails
expressing needs, values and priorities
Individual differences between persons, on the level of
disease, environment and personal features make that
self-management cannot be undertaken by default.
Self-management is ideally based on patients’ perceived
problems and their personal perceptions of their condition
in the context in which they live.34 52 Therefore, patients
should express their needs, values and priorities.47 Self-man-
agement will take shape depending on the individual’s abil-
ities.45 46 53 54 It is an individualised and personal concern
and is patient-driven.30 32 33 37 41 42 48 49 51 52 Without the indi-
vidual engagement of the patient, self-management cannot
be pursued, which implies the patient’s central role.47 This
individual engagement aims to promote health in activi-
ties.55 Furthermore, when a patient is a self-managing indi-
vidual, intrinsic motivation is needed.41 54 56
Attribute 6: self-management entails openness to ensure a
reciprocal partnership with healthcare providers
In attributes 1 and 2, it is stated that the person needs
to be active and take responsibility. This shift demands a
substantial effort from the person himself, but the anal-
ysis shows that there is the need to be openness to ensure
a reciprocal relationship with the professionals as well.
Bodenheimer et al29 state that there has been a shift from
traditional care to collaborative care. Traditional care
refers to professionals viewed as experts who tell patients
what to do; in this case, the patients are passive agents. In
collaborative care, such as expected in self-management
there is a shared expertise. In the partnership between
patients and healthcare providers, the professionals are
experts about the disease and the patients are experts
about their lives.29 An advantage of this way of thinking
is that the person is open to receiving feedback from the
healthcare provider, making it possible to continue the
care process.57 When patients are self-managing, it implies
that they are in favour of collaboration and guidance of
physicians and other healthcare providers.33 41–43 45 47 52 56
This means that a patient-provider partnership has to be
built, in which the patient and the provider occupy equal
positions and co-operatively work together.8 32–34 39 51 This
also means that the patient needs to know when to report
changes to healthcare providers. A variety of communica-
tion strategies, for example, being assertive, are required
to allow appropriate interaction with the healthcare
provider.41 42 46 58 Positive reinforcement in response to
patient care questions is essential.39
Attribute 7: self-management entails openness to social support
Next to the open communication with healthcare
providers, a supportive environment is equally important,
No. Year Author(s) Title
27 2013 Packer Self-management interventions: using occupational lens to
rethink and refocus
28 2013 Audulv The overtime development of chronic illness self-management
patterns: a longitudinal qualitative study
29 2014 Panagioti, Richardson, Small, Murray,
Rogers, Kennedy, Newman, & Bower
Self-management support interventions to reduce healthcare
utilisation without compromising outcomes: a systematic review
and meta-analysis
30 2014 Richardson, Loyola-Sanchez, Sinclair,
Harris, Letts, Macintyre, & Ginis
Self-management interventions for chronic disease: a systematic
scoping review
31 2014 Thille, Ward, and Russell Self-management support in primary care: enactments,
disruptionsand conversational consequences
32 2016 Raymond, Levasseur, Chouinard, Mathieu,
and Gagnon
Stanford chronic disease self-management programme in
myotonic dystrophy: new opportunities for occupational
therapists
33 2016 Dayenne van Schie, Stynke Castelein,
Jaap van der Bijl, Robert Meijburg, Barbara
Stringer and Berno van Meijel
Systematic review of self-management in patients with
schizophrenia: psychometric assessment of tools, levels of self-
management and associated factors
Included articles based on triangulation of researchers.
34 1997 Clark, Janzand Dodge. Self-management
35 1998 Dunbar, Jacobson, and Deaton Heart failure: strategies to enhance patient self-management
The order of the articles in the table is rst based on the different phases of the search strategy and second by date.
Table 1 Continued
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despite the requirement for self-managing patients to
act autonomously and be responsible for their own care
process. Such an environment is enabled through family
support and relationships with peers and significant
others.41 42 45 56 These significant others refer to the entire
self-management support system, which can consist of the
patient’s family, friends, volunteer groups.30 Miller et al51
describe this as the social community environment. To
strengthen the necessary relationships, the patient must
communicate with family and with the environment in
general.30 46 51 Of note, Ellis et al37 find it regretful that
the origins of self-management lie in individualistic
behavioural change approaches. In these models, the
importance of social support is disregarded. They wish
to emphasise the importance of combining individual
responsibility and social support, the significance of
which is also recognised by other authors.41 57 59 Together
with self-reliance, family and community support is neces-
sary to fulfil a self-managing attitude.28
Summarising attributes
Attribute 8: self-management is a lifetime task
Since self-management is closely linked to chronic condi-
tions, it is not a task that has an end point. Self-man-
agement is a lifetime task.33 34 60 Ghahari and Packer61
elaborated on this and argued specifically that the
management of symptoms, the emotional consequences
and the impact of chronic conditions are everyday tasks
for patients throughout their entire life.
Attribute 9: self-management assumes personal skills
To be able to fulfil this lifetime task, five skills recur in
multiple articles when it comes to self-management,
regardless of the type of condition. These skills are
related to the other described attributes and summarise
in a certain way the above-described person-oriented and
person-environment-oriented attributes.
Attribute 9.1: problem-solving
The problem-solving ability of an individual is
often discussed when self-management skills are
explored.28 29 32 34 40 41 This consists of problem definition,
the generation of possible solutions, solution implemen-
tation and the evaluation of results. This skill does not
entail dictating certain solutions for a specific problem,
but rather the learning of skills to deploy solutions.
Following Lorig and Holman,34 the concept of self-man-
agement is problem-based, or more specifically, based on
patient-perceived problems.
Attribute 9.2: decision-making
Decision-making is the second recognised skill of
self-management.34 41 This skill is related to the ‘informed
patient’ attribute, which is needed to make informed
choices.37 57 This skill can also be linked to the patient
and healthcare provider partnership as self-management
entails collaborative decision-making.33 47
Attribute 9.3: using resources
Having access to the right resources is also related to the
‘informed patient’ attribute. Using resources concerns
learning how to find and use the right resources.47 Such
resources could include websites, libraries, community
agencies and so on.52
Attribute 9.4: forming a patient-healthcare provider
partnership
This aspect of self-management has already been
considered as a separate attribute. Several authors have
described the importance of this partnership as an inde-
pendent attribute of self-management. Notwithstanding,
a few authors consider this partnership to be among the
self-management skills.34 62
Attribute 9.5: goal-setting, taking action and evaluating
the attainment of goals
The fifth self-management skill is action planning,
which is based on making a short-term action plan and
implementing it. The need to recognise ‘taking action’
as a self-management skill is supported by more than one
researcher.34 40 41 51 52 Action planning is also related to
goal-setting because individuals need to establish goals
before implementing them.41 46 48 52 57 Eventually, the
Table 2 Overview of attributes
Person-oriented attributes
Attribute 1 The person must actively take part in
the care process.
Attribute 2 The person must take responsibility for
the care process.
Attribute 3 The person must have a positive way
of coping with adversity.
Person-environment-oriented attributes
Attribute 4 The person must be correctly informed
about the condition, disease and
treatment.
Attribute 5 Self-management is individually
dened and entails expressing needs,
values and priorities.
Attribute 6 Self-management entails openness to
ensure a reciprocal partnership with
healthcare providers.
Attribute 7 Self-management entails openness to
social support.
Summarising attributes
Attribute 8 Self-management is a lifetime task.
Attribute 9 Self-management assumes personal
skills:
9.1 Problem-solving;
9.2 Decision-making;
9.3 Using resources;
9.4 Forming a patient-healthcare
provider partnership;
9.5 Goal setting and evaluating the
attainment of the goals.
Attribute 10 Self-management encompasses
medical, role and emotional domains:
10.1 Medical management;
10.2 Role-management;
10.3 Emotional management.
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person should be able to evaluate whether the goals
are met. Evaluation comprises core skills in personally
evaluating personal needs, rather than an evaluation
performed by healthcare providers.51
Attribute 10: self-management encompasses medical, role and
emotional domains
This attribute is somehow distinct from the others because
it merges the above-described attributes in three different
domains in which self-management is relevant. This final
attribute has to be considered as a comprehensive over-
view and shows the different layers of self-management.
There is a need to focus on managing medical aspects
(such as the ability to take medication on time), the real-
life context (eg, going to the sports club) and how to
deal with emotions (eg, frustration and feelings of loss).
Generally, three domains are described: medical manage-
ment, role management and emotional management.62
Many researchers29 34 50 59 refer to these three domains,
constructed by Corbin and Strauss. Audulv30 also refers
to this subdivision of work, but mentions commonly
used synonyms, such as illness-related work, biographical
work and everyday work. Illness-related work reflects the
management of symptoms or crisis prevention, which is
often termed illness management. In addition, he equates
managing work or household tasks with everyday life tasks
or role management. Finally, he uses the term biograph-
ical work to reflect managing emotions or identity.
Attribute 10.1: medical management
The first domain, medical management is often
disease-specific and includes both very complex and tech-
nical tasks (eg, dialysis at home), as well as quite simple
tasks (eg, taking medicine).30 Certain researchers have
stipulated that lifestyle changes must be undertaken to
perform medical management.28 41 In this regard, they
suggest reducing lifestyle risk factors and promoting health
(prevention and early intervention), for instance, through
maintaining a therapeutic exercise regimen, adhering to a
diet, using an inhaler, taking medicine and smoking cessa-
tion.34 47 48 60 Organising, planning and remaining compliant
with a medication administration schedule are also part
of medical management.32 41 63 Also, self-monitoring and
symptom management are required in medical manage-
ment.29 31 32 55 56
Richard and Shea56 describe self-monitoring as the
‘monitoring of specific physiologic parameters or symp-
toms of a health condition’. Certain researchers explicitly
highlight the importance of monitoring changes in the
health condition.28 45 48 49 55 58 63 The concept analysis of
self-monitoring written by Wilde and Garvin64 shows that
two components give rise to seeking contact with health
professionals or for patients to take action themselves.
First, the individual needs to be aware of bodily symptoms,
sensations, daily activities and cognitive processes. Second,
self-monitoring implies taking measurements and reading
and recording variables. This includes, for instance, using
glucometers for diabetes, but also checklists and diaries.
Some authors refer to self-monitoring as recording
subjective and objective measurements. Also, recorded
symptoms may be compared with measurements.64
Edworthy39 emphasises the importance of monitoring the
level and the intensity of symptoms, for example, pain, in
combination with collecting objective data, for example,
blood pressure, while Clark et al42 underscore the useful-
ness of physical indicators. Lawn et al47 expand this list
and—in addition to physical functioning—also consider
the impact of emotional, occupational and social func-
tioning. The major focus is on measurement, which is not
the case with symptom management.64 While Wilde and
Garvin64 treat self-monitoring and symptom management
as equal terms, Barlow et al41 consider self-monitoring to
be an element of symptom management.
Symptom management can be viewed as ‘subjective expe-
riences reflecting changes in biopsychosocial functioning,
sensations or cognition of an individual’.65 In contrast to
self-monitoring, symptom management is independent of
measurements. Another difference is that symptom manage-
ment can be managed by the healthcare providers56 aiming
to control the disease by recognising and responding to
symptoms8 30 47 56 59 61 and preventing further illness or acci-
dents.8 43
Attribute 10.2: role management
When self-managing patients assume the tasks of role
management, they are deemed to maintain, change or
create new meaningful behaviours or life roles with the
purpose of managing the disease and its associated effects.
This kind of management also includes reviewing the roles
of an individual and afterwards accomplishing the essential
adaptations or changes.29 33 34 39 40 43 47 51 59 61 The fact that role
management indicates behavioural changes is confirmed
by the individualistic behavioural approaches on which
self-management is based.37 Role management also involves
coordination and planning if the accomplishment of
everyday activities is no longer self-evident because of pain,
fatigue and reduced mobility caused by chronic conditions,30
and requires attention to maintain meaningful participation
and occupational engagement in self-management.32
Attribute 10.3: emotional management
Emotional management represents the ability to deal
with emotions30 such as uncertainty, anger, depres-
sion, stress, etc.8 30 41 43 47 49 60 61 66 Emotional manage-
ment encompasses the predominantly inner process of
reviewing one’s life goals and identities. The manner in
which individuals with chronic conditions manage their
emotions can influence the ways in which they perform
their role and medical management.30
Step 5: model case
A model case is a fictive case in which the 10 attributes
are apparent and consequently an example of a good
self-manager. An example of David is given in box 1.
Step 6: additional cases
Borderline case
A borderline case is also a fictive case, but a case in which
attributes are lacking. An example of a borderline case is
given in box 2.
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In the case of Thomas some attributes of self-manage-
ment cannot be found: (a) a good relationship between
the patient and healthcare provider is lacking; (b) despite
knowing which agencies can provide him with assistance
(ie, Thomas is informed), the attribute ‘using resources’
is missing; (c) there is too much focus on medical
management, with no attention to role or emotional
management. In this case, there is too great a focus on
Thomas having a striking self-efficacy mechanism and
being highly self-appointed, which is good for achieving
certain aspects of self-management, but shifts other attri-
butes to the background.
Contrary case
A contrary is a clear example of ‘not the concept’. An
example of a contrary case is given in box 3.
The contradictions in the attributes can be observed in
this case: Clara does not make efforts to take responsi-
bility, she is knowledgeable only to a restricted extent, she
is not actively involved in the care process, she does not
act autonomously because she is dependent on the ther-
apist, there is an imbalance in the relationship between
therapist and patient, she is isolated from the outside
world, no specific skills can be recognised and she does
not experience managing her conditions as a lifetime
task. As soon as she was discharged from hospital and thus
institutional treatment, she stopped her care process.
The above-described cases show the complexity of
self-management and the possibility to compare a good
self-manager with a weak self-manager. When relating this
to healthcare practice, these cases can be used as exam-
ples to check whether programmes or interventions cover
all attributes, and what should be focused on when not all
attributes are covered.
Step 7: antecedents and consequences
Antecedents
As described above, antecedents are events or attributes
that must arise prior to the occurrence of self-manage-
ment. After thorough discussion within the research
group, we decided to classify self-efficacy and health
literacy as the two main antecedents.
Self-efficacy is an antecedent because it is considered
by different authors as ‘one of the possible mechanisms
by which self-management can be achieved’.34 51 56 In
Box 1 Example of a model case
David was 34 years of age and had been suffering from a specic heart
disease for 4 years. Therefore, he had to quit his professional sports ca-
reer. After an intensive follow-up during hospitalisation, including open-
heart surgery, David was allowed to return home. He had difculties
nding his way in a completely different lifestyle. He had always been
very involved in sports, but after his operation he needed to slow down.
Being diagnosed with a heart disease caused him anxiety, but continu-
ing his sport could lead to heart failure and eventually death. As a result
of the good information offered during the hospital stay, for example,
an explaining of the general issues of his heart problems and healthy
lifestyle, and the conversation about David’s goals for the next months,
he had been able to build an excellent and condent relationship.
He was very compliant with his medication schedule and had always
had a healthy lifestyle. When he was discharged from hospital, he
signed up for a patient education programme on heart diseases. The
specialist as well as other healthcare providers worked in partnership
with David, meaning that they involved him in (personalised) goal set-
ting and action planning, as well as having a personalised evaluation
with David. In the programme that was offered to David, information
about the medical issues and ways to manage these, as well as social
issues (role management) and emotional issues were discussed. As
he had survived open-heart surgery, his faith in science and medicine
was strengthened. His family, particularly his wife, were very supportive
from when he was diagnosed. In his sports club he had made many
friends who continued to support him, even when he reduced his sports
activities. This very independent young man was used to solving prob-
lems when they occurred, making informed decisions and so on. For the
last 4 years, he had been struggling with his inability to cope with his
feelings of ineffectiveness. He was no longer allowed to play sports as
much as he had 4 years previously. On the recommendation of his best
friend, he decided to become a board member of his own sports club.
In making that decision, he found joy again. He reviewed his life roles
and found a new, meaningful role, namely being a board member. Thus,
it was easier to cope with the feelings of incapacity and these were
exchanged for feelings of joy and pride.
Box 2 Example of a borderline case
Thomas was 47 years of age and had been diagnosed with chronic
obstructive pulmonary disease 5 years ago. As soon as the diagnosis
was made, he resolved to live a healthier lifestyle. He quit smoking
and became interested in healthy cooking. His old mobile phone was
exchanged for a smartphone, on which he installed many health and
tness software applications. His highly supportive friends and family
knew Thomas to be a person who was eager to learn, very aware of
his condition and had an autonomous personality. He was highly alert
to symptoms that might indicate a complication in his chronic disease.
However, the fact that he was self-condent also had some disadvan-
tages. It took him a long time to consult his physician. Thomas did not
have a good relationship with his personal doctor. His brother reported
that Thomas had a negative attitude towards caregivers since their fa-
ther’s death.
Box 3 Example of a contrary case
Clara was 68 years of age and had been referred for treatment due to
rheumatism in both hands. This patient refused to believe in the ad-
vantages of treatment, so started her treatment with some resistance.
She had little insight into her condition and had no intrinsic motivation
to improve. The doctor referred this patient to an occupational therapist
to learn some joint-saving techniques. The treating therapist showed
her which movements should be avoided and which alternatives could
be offered. In the presence of the therapist, the patient—sometimes
reluctantly—performed joint-saving techniques. Once Clara was home
again, without the therapist’s supervision, the joint-saving techniques
were not applied, her medication was not taken and the pain and feel-
ings of impotence increased. During her rst therapy session, she told
her occupational therapist, ‘it came naturally, and it will leave the same
way’. Furthermore, she continued to isolate herself from the outside
world.
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addition, self-efficacy reflects the development of confi-
dence to manage the aspects of the three domains of
self-management,32 37 41 to deal with chronic conditions
and their consequences29 32 67 and having the confidence
that a specific behaviour can be accomplished.33 39 44
A second important antecedent is health literacy;
Mackey et al68 implies that there is an association between
health literacy and self-management skills. Kitt et al
follow this premise and argue that a low health literacy
implies poorer self-management behaviours and health
literacy is therefore considered to be an antecedent of
self-management.38
Furthermore, perceived health status,56 social support,
health beliefs, motivation and coping are also referred to
as antecedents.51
Consequences
The consequences are those events or incidents that arise
after self-management. Having a self-managing attitude
towards one’s care process results in multiple conse-
quences, including improved health outcomes, reduced
mortality, improved functional ability, improved quality
of life, reduced healthcare costs, improved personal expe-
rience, improved social participation, improved func-
tional outcomes, improvements in health behaviours,
improved self-efficacy, treatment adherence and reduced
healthcare resource utilisation.30 43 50 51 56 Self-efficacy
is thus also defined as a consequence, as well as being
described as an antecedent in the above section. With this
in mind, specific self-management techniques are taught
to increase self-efficacy.39
However, the multiplicity of consequences deserves
further explanation. First, the consequence ‘improved
health outcomes’56 relates to improved ‘perceived health
(psychosocial well-being, perceived stress and optimal
health)’50 and ‘improved health status’.43 The conse-
quence ‘improved health outcomes’ is also similar to the
consequence ‘disease status/severity (symptom frequency
and severity, number of exacerbations and physiologic
parameters)’.51 This consequence seems to be a diag-
nosis-specific consequence of self-management and is
therefore also related to the consequence ‘disease-re-
lated outcomes’.50 In addition, Warsi et al69 support the
assumption that improved healthcare outcomes are
disease-related. These disease-related outcomes include
disease progression, control of pain, fatigue symptoms,
cognitive symptoms and depression.50 Moreover, social
participation (including activity level, keeping up social
relationships, participation), personal experience (accep-
tance, positive self-image, control over negative feelings),
functional outcomes (physical, emotional and social
functioning) and quality of life are also described as
consequences.50
Step 8: empirical referents
Empirical referents are measurable ways of demonstrating
the possible application of self-management by checking
whether the attributes can be measured. Unfortunately,
none of the articles in the analysis specifically named the
empirical referents for the entire concept of self-manage-
ment. Therefore, each of the attributes was checked to
establish whether there are tools to measure the attributes
separately. The analysis showed that there is a plethora
of tools that have been developed to measure these attri-
butes. An overview of the measurement tool and exam-
ples of possible questions is given in table 3.
Schematic representation of the results: a self-management
model
A model was created to outline the attributes and show
their interrelationships (figure 2).
DISCUSSION AND CONCLUSION
Self-management is a concept that is frequently used in
healthcare. Unfortunately, there is considerable ambi-
guity regarding the concept. This concept analysis is
an attempt to enhance agreement. It has resulted in 10
attributes delineating the concept organised into three
groups: (a) person-oriented attributes, (b) person-envi-
ronment-oriented attributes and (c) summarising attri-
butes. Group (a): person-oriented attributes: the person
must (1) actively take part in the care process (2) take
responsibility for the care process; (3) have a positive
way of coping with adversity. Group (b): person-envi-
ronment-oriented attributes: (4) the person must be
informed about the condition, disease and treatment and
self-management (5) should be individualised and entails
expressing needs, values and priorities, (6) requires open-
ness to ensure a reciprocal partnership with healthcare
providers and (7) demands openness to social support.
Finally, group (c): summarising attributes: self-manage-
ment (8) is a lifetime task, (9) assumes personal skills
and (10) encompasses medical, role and emotional
management.
As a final conclusion, a new definition has been
proposed:
Self-management is the intrinsically controlled ability
of an active, responsible, informed and autonomous
individual to live with the medical, role and emotion-
al consequences of his chronic condition(s) in part-
nership with his social network and the healthcare
provider(s).
This definition and the 10 attributes we found might
be an answer for the lack of taxonomy and subdivision of
characteristics of self-management as recently stated by
Jonkman et al25 and Pearce et al.26 From this perspective,
the results of this study offer opportunities to provide a
basis to create coherent and comparable self-manage-
ment programmes and could enhance the quality of
healthcare delivery in dealing with chronic health condi-
tions and multi-morbidity.
Relating these new insights to the broader literature
on self-management shows that the existing evidence is
still primarily on medical management, rather than on
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emotional and role management.32 34 These 10 attri-
butes can be used as a lever to exceed this narrow level
of medical management. Specifically, because there is a
need for a focus on self-management based on a more
activity-oriented vision and consequently consideration of
emotional and role management.32 This means also that
more attention should be given to aspects of goal-setting
in performing activities of daily living (eg, I want to be
able to pick up my grandchild from school) rather than
solely focusing on goals related to the medical condition
(eg, I want to take in my medication on time). This is
in line with Richardson et al,44 who argue that self-man-
agement should be seen as empowering patients to be
active and motivated in managing their chronic condi-
tion in their real-life context and is in line with theoret-
ical concepts such as goal-oriented care70 71 in which it
is argued for the need to evolve from purely medical to
broader behavioural management. This shows the slowly
increasing interest in the other two domains besides
medical management. Focusing on these three domains
would provide an improved fit with a biopsychosocial
model, rather than solely with the biomedical paradigm.4
However, this means that optimal self-management
behaviour, aiming to incorporate each of the 10 attributes,
is difficult and demands substantial effort, not only from
the professionals, but primarily from the patient.72 In this
regard, to empower patients to perform optimal self-man-
agement behaviour, a wide variety of coaching tools
should be developed. E-health technologies are expected
to play an important role in supporting patients in their
self-management behaviour,72 but needs further develop-
ment and should be tailored to the individual. From the
Table 3 Examples of measurement tools and examples of possible questions
Attribute Example of a measurement tool
Example of a possible question or item from the tool relating to
the attribute
Person-oriented attributes
1 Self-Advocacy Scale (SAS)78 I frequently make suggestions about my healthcare needs.
2 SAS78 Sometimes there are good reasons not to follow the advice of a
physician. I have full knowledge of my health problem.
3 COPE inventory79 I focus on dealing with this problem, and if necessary let other
things slide a little.
3 Medical Outcomes Study-Social Support
Survey80 Is there someone you can count on to listen to you when you need
to talk?
Person-environment-oriented attributes
4 SAS78 Iam educated about my health or I have full knowledge of my
health problem.
5 Occupational Performance History Interview81 Are you able to meet personal needs?
6 The Healthcare Climate Questionnaire
(HCCQ)82 I feel that my healthcare provider team has provided me choices
and options.
7 Ghent Participation Scale83 I completely trust the person(s) who performed this activity for me.
Summarising attributes
8 Life Balance Inventory How is the degree of congruence between your desired and actual
time use (in 53 activities)?
9.1 COPE inventory79 I take additional action to try to get rid of the problem.
9.2 Impact on Participation and Autonomy84 The possibility to wash and dress myself, or have myself washed
and dressed, when I want is excellent, very good, moderate, poor,
very poor.
9.3 The Duke Older Americans Resources and
Services Procedures85 Is there someone who gives you information about the kind of help
that is available or puts you in touch with those who can help you?
9.4 HCCQ82 My healthcare provider team encourages me to ask questions.
9.5 Goal-Setting Evaluation Tool86 Does the plan identify how often actions will be taken to reach the
goal?
10.1 Summary of Diabetes Self-Care Activities
measure87 On how many of the last 7 days did you take the correct number of
(pills/injections) for this medication?
10.2 Perceived Meaning of Activity in Housing88 How important are the activities that you have performed during
the last week?
10.3 Patient Health Engagement Scale89 When I think about my disease, I feel totally oppressed, I am upset,
I have accepted my illness or I can give sense to my life despite my
illness condition.
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clients’ perspective, it is crucial that healthcare profes-
sionals recognise the current level and readiness for
self-management of the individual client. Patients want
their strengths to be identified and empowered.73
However, the effectiveness of self-management inter-
vention and its relation with health status has already been
shown. The outcomes of randomised controlled studies
have pointed out that self-management programmes
generally improve health status,15 18 19 46 and health
behaviours, although limited.23 24 Lorig and Holman34
found that the associations between improvements in
patients’ behaviours and improvements in health status
were weak to non-existent. Also, in other studies, there are
no convincing arguments about this relationship.74 This
aspect is of particular interest when considering self-man-
agement as part of the definition of health because it
questions whether there is already enough evidence to
change the health paradigm towards a more dynamic
definition of health and incorporating self-management
in the definition.
Improving our in-depth knowledge about self-manage-
ment and creating common ground on how interventions
should be developed opens up possibilities to compare
programmes, improve the quality of existing programmes.
It can also add to the emerging evidence that improved
self-management behaviour can reduce hospitalisation and
total healthcare utilisation.8 This result, however, should
be considered with care. For instance, there is empirical
evidence that the length of stay (number of days) in hospital
is positively correlated with improved self-management.43
This might inspire researchers to assume that a reduced
number of days in hospital results in a decrease in self-man-
agement and plead in favour of longer hospital admissions.
More research is needed to study the link between self-man-
agement and ‘reduced healthcare utilisation’ and what
types of healthcare utilisation are necessary and which are
not. This argument relates to the attribute ‘the patient must
be informed about the condition, disease and treatment’
because it suggests well-considered and adequate hospital-
isations and healthcare utilisation in general. Further inves-
tigation will be needed to show whether revision of this
attribute or a review of the consequence ‘reduced health-
care utilisation’ is necessary. The way in which Miller et al51
described the consequence ‘healthcare resource utilisation’
Figure 2 A schematic representation of the self-management attributes.
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could be a broader proposition because it is out of the ques-
tion to look for declining numbers in healthcare utilisation.
If future research shows that self-managing individuals are
related to a higher number of hospitalisations, then that is
a fact. We cannot assume that self-management is linked to
fewer hospitalisations without strong evidence.
LIMITATIONS AND RECOMMENDATIONS
A concept analysis is a dynamic methodology and is sensi-
tive to cultural, contextual and societal changes, although
it is a very structured and systematic mode of analysis.
This time-dependent methodology can produce different
results over a few years, depending on the new knowledge
that emerges from new insights. Nevertheless, this kind
of inquiry has its own advantages. Following the various
steps encourages communication and fosters theory
development and research. This will enhance under-
standing among colleagues and may enable researchers
to construct measurement instruments for the concept
concerned.27 However, other methods of concept anal-
ysis (eg, Wilson’s method, the hybrid model of concept
analysis and Rodgers’ evolutionary method) were also
available, but found to be less accessible.75 One disadvan-
tage in all concept analyses is the non-random sampling
method. This means that the articles included might
have been systematically different from those excluded,
indicating a selection bias. This could lead to an unrep-
resentative image of self-management articles76 overall,
as could have been the case in, for instance, a systematic
review. However, this method allowed us to stop searching
when saturation occurred and no new information was
gathered; such a method facilitates a more targeted way
of searching for evidence.
One important pitfall in this method is the difficulty to
allocate characteristics as an attribute or as an antecedent
of consequence. In this specific study, it is about the allo-
cation of ‘self-efficacy’ and ‘social support’.
Depending on the different authors, self-efficacy can
be regarded as an attribute, antecedent or consequence.
However, based on the method employed,27 an antecedent
or consequence cannot be an attribute at the same time.
We did not find conclusive arguments for any particular
assignment, although the majority of authors view self-ef-
ficacy as an antecedent,32–34 37 39 41 and because self-effi-
cacy is viewed as a meaningful mechanism for facilitating
self-management,34 we primarily chose to allocate it as
an antecedent. Also, ‘social support’ can be seen as an
attribute or an antecedent. When it is assumed that social
support is an attribute, it encourages the assumption that
individuals with or without a weak social network can never
achieve self-management. The main reason for allocating
it as an attribute is the changing view on self-management,
from one in which self-management is seen as a primarily
individualistic behavioural change37 towards one in which
it is considered a behavioural change that is, to a great
extent, facilitated through social support, including both
professional and non-professional.28 41 46 50 51 57 59 This
aspect underpinned our choice to allocate social support
as an attribute because it seems to be an inevitable feature.
Regarding this evolution, there have been attempts to
progress from self-management towards co-management.
The most decisive elements of self-management became
apparent through the defined attributes, but mutual rela-
tionships must be elucidated. The attributes have now
been described based in a logical order. However, the
question is whether there is somehow a conditionality
within the different attributes; for example, can someone
who is more informed (attribute 4) take greater responsi-
bility (attribute 2) in his care process. This aspect has not
been researched in the current study, but offers opportu-
nities for further research.
In the context of the measurability of self-management,
the empirical referents are quite clear, but could also be
studied in greater depth, because the examples given in this
study can only be considered exemplary. The development
of a valid and reliable instrument to measure self-manage-
ment encompassing all attributes would enable researchers
to compare the results of effectiveness studies. As yet, it is
very difficult to compare research results because no gold
standard for self-management is available.
CONCLUSION
The results of this concept analysis offer possibilities
for practice, research and education. As previously
mentioned, the development of a conceptual frame-
work enhances understanding between practitioners and
researchers. This concept analysis also has added value
at the educational level.77 Because of the rising medical
costs, alternatives for keeping healthcare organised are
being sought. These notable changes are greatly influ-
encing the education of healthcare providers. Therefore,
patients need to be educated and healthcare providers
need to be trained in facilitating self-management skills.
This means that self-management competencies must be
part of healthcare curricula.
The results of this concept analysis have favourable
implications for practice, research and education.
However, more research is needed to develop a measure
including all of the attributes.
PATIENT AND PUBLIC INVOLVEMENT STATEMENT
There were no patients involved in this study. The names
of the persons mentioned in the model case and in the
additional cases are fictitious.
Author afliations
1Faculty of Medicine and Health Sciences, Department of Rehabilitation Sciences,
Occupational Therapy Program, Ghent University, Ghent, Belgium
2Occupational Therapy, Artevelde University College, Ghent, Belgium
3Occupational Therapy, HAN University of Applied Sciences, Nijmegen, The
Netherlands
4Occupational Therapy and Occupational Science, Health University of Applied
Science Tyrol, Innsbruck, Austria
5Occupational Therapy, School of Health Professions, Zurich University of Applied
Sciences, Winterthur, Switzerland
on 20 July 2019 by guest. Protected by copyright.http://bmjopen.bmj.com/BMJ Open: first published as 10.1136/bmjopen-2018-027775 on 16 July 2019. Downloaded from
14 Van de VeldeD, etal. BMJ Open 2019;9:e027775. doi:10.1136/bmjopen-2018-027775
Open access
6Department of Gerontology and Frailty in Ageing Research Group, Vrije Universiteit,
Brussel, Belgium
Contributors DVdV and FDZ led the writing of the manuscript. DVdV, FDZ and SJ
analysed and interpreted the data. FDZ and SJ had substantial contribution in data
acquisition, analysis and interpretation. DVdV and PDV had substantial contribution
in the study conception and design, data analysis and interpretation. UC, DS and
TS served as external experts to increase the credibility of the ndings. All authors
revised and approved the nal version of the manuscript.
Funding The authors have not declared a specic grant for this research from any
funding agency in the public, commercial or not-for-prot sectors.
Competing interests None declared.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement There are no additional data in this study.
Open access This is an open access article distributed in accordance with the
Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which
permits others to distribute, remix, adapt, build upon this work non-commercially,
and license their derivative works on different terms, provided the original work is
properly cited, appropriate credit is given, any changes made indicated, and the use
is non-commercial. See: http:// creativecommons. org/ licenses/ by- nc/ 4. 0/.
REFERENCES
1. WHO. Constitution of the World Health Organisation 2006. 2016.
Available www. xho. int/ governance/ eb/ who_ constitutio_ en. pdf
(Accessed 28 Nov 2017).
2. Lancet T. What is health? The ability to adapt. Lancet
2009;373:781–6736.
3. Huber M, Knottnerus JA, Green L, et al. How should we dene
health? BMJ 2011;343:d4163.
4. Van de Velde D, Eijkelkamp A, Peersman W, et al. How competent
are healthcare professionals in working according to a bio-psycho-
social model in healthcare? The current status and validation of a
scale. PLoS One 2016;11:e0164018.
5. De Maeseneer J, Boeckxstaens P. James Mackenzie Lecture 2011:
multimorbidity, goal-oriented care, and equity. Br J Gen Pract
2012;62:e522–4.
6. Fortin M, Hudon C, Haggerty J, et al. Prevalence estimates of
multimorbidity: a comparative study of two sources. BMC Health
Serv Res 2010;10:111.
7. WHO. Global action plan for the prevention and control of non-
communicable diseases 2013-2020. Geneve: World Health
Organisation, 2013.
8. Panagioti M, Richardson G, Small N, et al. Self-management support
interventions to reduce health care utilisation without compromising
outcomes: a systematic review and meta-analysis. BMC Health Serv
Res 2014;14:356.
9. Wahowiak L. Providing lifelong education and support: updates
in the 2017 National Standards for Diabetes Self-Management
Education and Support. Diabetes Spectr 2017;30:298–300.
10. Barlow JH, Barefoot J. Group education for people with arthritis.
Patient Educ Couns 1996;27:257–67.
11. McKenna S, Jones F, Gleneld P, et al. Bridges self-management
program for people with stroke in the community: A feasibility
randomized controlled trial. Int J Stroke 2015;10:697–704.
12. Andersen LN, Juul-Kristensen B, Roessler KK, et al. Efcacy of
'Tailored Physical Activity' on reducing sickness absence among
health care workers: A 3-months randomised controlled trial. Man
Ther 2015;20:666–71.
13. Brody BL, Williams RA, Thomas RG, et al. Age-related macular
degeneration: a randomized clinical trial of a self-management
intervention. Ann Behav Med 1999;21:322–9.
14. Kos D, Duportail M, Meirte J, et al. The effectiveness of a self-
management occupational therapy intervention on activity
performance in individuals with multiple sclerosis-related fatigue. Int
J Rehab Res 2016;39:255–62.
15. Detaille SI, Heerkens YF, Engels JA, et al. Effect evaluation of
a self-management program for dutch workers with a chronic
somatic disease: a randomized controlled trial. J Occup Rehabil
2013;23:189–99.
16. Pinxsterhuis I, Sandvik L, Strand EB, et al. Effectiveness of a
group-based self-management program for people with chronic
fatigue syndrome: a randomized controlled trial. Clin Rehabil
2017;31:93–103.
17. Kendall E, Catalano T, Kuipers P, et al. Recovery following stroke: the
role of self-management education. Soc Sci Med 2007;64:735–46.
18. Davis AH, Carrieri-Kohlman V, Janson SL, et al. Effects of treatment
on two types of self-efcacy in people with chronic obstructive
pulmonary disease. J Pain Symptom Manag 2006;32:60–70.
19. Dziedzic K, Nicholls E, Hill S, et al. Self-management approaches
for osteoarthritis in the hand: a 2×2 factorial randomised trial. Ann
Rheum Dis 2015;74:108–18.
20. Ghahari S, Leigh Packer T, Passmore AE. Effectiveness of an
online fatigue self-management programme for people with chronic
neurological conditions: a randomized controlled trial. Clin Rehabil
2010;24:727–44.
21. Spadaro A, De Luca T, Massimiani MP, et al. Occupational therapy
in ankylosing spondylitis: Short-term prospective study in patients
treated with anti-TNF-alpha drugs. Joint Bone Spine 2008;75:29–33.
22. Monninkhof E, van der Valk P, van der Palen J, et al. Effects of a
comprehensive self-management programme in patients with chronic
obstructive pulmonary disease. Eur Respir J 2003;22:815–20.
23. Cameron-Tucker H, Wood-Baker R, Owen C, et al. Chronic disease
self-management and exercise in COPD as pulmonary rehabilitation:
a randomized controlled trial. Int J Chron Obstruct Pulmon Dis
2014;9:513–23.
24. Siu AM, Chan CC, Poon PK, et al. Evaluation of the chronic disease
self-management program in a Chinese population. Patient Educ
Couns 2007;65:42–50.
25. Jonkman NH, Schuurmans MJ, Groenwold RHH, et al. Identifying
components of self-management interventions that improve
health-related quality of life in chronically ill patients: Systematic
review and meta-regression analysis. Patient Educ Couns
2016;99:1087–98.
26. Pearce G, Parke HL, Pinnock H, et al. The PRISMS taxonomy of
self-management support: derivation of a novel taxonomy and initial
testing of its utility. J Health Serv Res Policy 2016;21:73–82.
27. Walker L, Avant K. Strategies for theory construction in nursing. 5th
edn. Edinburgh: Pearson, 2014.
28. Omisakin F, Ncama B. Self, self-care and self-management
concepts: implications for self-management education. Educ Res
2011;2:5.
29. Bodenheimer T, Lorig K, Holman H, et al. Patient self-management of
chronic disease in primary care. JAMA 2002;288:2469.
30. Audulv Å. The over time development of chronic illness self-
management patterns: a longitudinal qualitative study. BMC Public
Health 2013;13:452.
31. Clement S. Diabetes self-management education. Diab Care
1995;18:1204–14.
32. Packer TL. Self-management interventions: using an occupational
lens to rethink and refocus. Aust Occup Ther J 2013;60:1–2.
33. Bodenheimer T, MacGregor K, Shariff C. Helping patients manage
their chronic conditions: California HealthCare Foundation, 2005.
34. Lorig KR, Holman H. Self-management education: history, denition,
outcomes, and mechanisms. Ann Behav Med 2003;26:1–7.
35. Boger E, Ellis J, Latter S, et al. Self-management and self-
management support outcomes: a systematic review and
mixed research synthesis of stakeholder views. PLoS One
2015;10:e0130990.
36. Taylor D, Bury M. Chronic illness, expert patients and care transition.
Sociol Health Illn 2007;29:27–45.
37. Ellis J, Boger E, Latter S, et al. Conceptualisation of the 'good'
self-manager: A qualitative investigation of stakeholder views on
the self-management of long-term health conditions. Soc Sci Med
2017;176:25–33.
38. Kitt J, Beaton B, Cook C, et al. Self-management support for
Canadians with chronic health conditions. Toronto: Health Council of
Canada, 2012.
39. Edworthy SM. How important is patient self-management? Baillieres
Best Pract Res Clin Rheumatol 2000;14:705–14.
40. Packer T. An occupation-focused approach to self-management.
Occup Ther Now 2011;13:1.
41. Barlow J, Wright C, Sheasby J, et al. Self-management approaches
for people with chronic conditions: a review. Patient Educ Couns
2002;48:177–87.
42. Clark N, Becker M, Janz N, et al. Self-management of chronic
disease by older adults: a review and questions for research. J Aging
Health 1991;3:24.
43. Lorig KR, Sobel DS, Ritter PL, et al. Effect of a self-management
program on patients with chronic disease. Eff Clin Pract
2001;4:256–62.
44. Lorig KR, Sobel DS, Stewart AL, et al. Evidence suggesting that
a chronic disease self-management program can improve health
on 20 July 2019 by guest. Protected by copyright.http://bmjopen.bmj.com/BMJ Open: first published as 10.1136/bmjopen-2018-027775 on 16 July 2019. Downloaded from
15
Van de VeldeD, etal. BMJ Open 2019;9:e027775. doi:10.1136/bmjopen-2018-027775
Open access
status while reducing hospitalization: a randomized trial. Med Care
1999;37:5–14.
45. Schulman-Green D, Jaser S, Martin F, et al. Processes of self-
management in chronic illness. J Nurs Scholarsh 2012;44:136–44.
46. Barlow JH, Turner AP, Wright CC. A randomized controlled study of
the Arthritis Self-Management Programme in the UK. Health Educ
Res 2000;15:665–80.
47. Lawn S, McMillan J, Pulvirenti M. Chronic condition self-
management: expectations of responsibility. Patient Educ Couns
2011;84:e5–e8.
48. Norris SL, Engelgau MM, Narayan KM. Effectiveness of self-
management training in type 2 diabetes: a systematic review of
randomized controlled trials. Diabetes Care 2001;24:561–87.
49. Richardson J, Loyola-Sanchez A, Sinclair S, et al. Self-management
interventions for chronic disease: a systematic scoping review. Clin
Rehabil 2014;28:1067–77.
50. Audulv Å, Packer T, Hutchinson S, et al. Coping, adapting or self-
managing - what is the difference? A concept review based on the
neurological literature. J Adv Nurs 2016;72:2629–43.
51. Miller WR, Lasiter S, Bartlett Ellis R, et al. Chronic disease
self-management: a hybrid concept analysis. Nurs Outlook
2015;63:154–61.
52. Thille P, Ward N, Russell G. Self-management support in primary
care: enactments, disruptions, and conversational consequences.
Soc Sci Med 2014;108:97–105.
53. Wilkinson A, Whitehead L. Evolution of the concept of self-care
and implications for nurses: a literature review. Int J Nurs Stud
2009;46:1143–7.
54. van de Wiel HB, Weijmar Schultz WC. Self management: a new
paradigm in patient education? J Psychosom Obstet Gynaecol
2004;25:85–6.
55. van Schie D, Castelein S, van der Bijl J, et al. Systematic review
of self-management in patients with schizophrenia: psychometric
assessment of tools, levels of self-management and associated
factors. J Adv Nurs 2016;72:2598–611.
56. Richard AA, Shea K. Delineation of self-care and associated
concepts. J Nurs Scholarsh 2011;43:no–64.
57. Alderson M, Starr L, Gow S, et al. The program for rheumatic
independent self-management: a pilot evaluation. Clin Rheumatol
1999;18:283–92.
58. Bayliss EA, Ellis JL, Steiner JF. Barriers to self-management and
quality-of-life outcomes in seniors with multimorbidities. Ann Fam
Med 2007;5:395–402.
59. Raymond K, Levasseur M, Chouinard M-C, et al. Stanford Chronic
Disease Self-Management Program in myotonic dystrophy: New
opportunities for occupational therapists. Can J Occup Ther
2016;83:166–76.
60. Clark N, Janz N, Dodge J, et al. Self-management of heart disease
by older adults: Assessment of an intervention based on social
cognitive theory. Res Aging 1997;19:20.
61. Ghahari S, Packer T. Effectiveness of online and face-to-face
fatigue self-management programmes for adults with neurological
conditions. Disabil Rehabil 2012;34:564–73.
62. Corbin J, Strauss AL. Unending work and care: managing chronic
illness at home: Jossay-Bass, 1988.
63. Dunbar SB, Jacobson LH, Deaton C. Heart failure: strategies to
enhance patient self-management. AACN Clin Issues 1998;9:244–56.
64. Wilde MH, Garvin S. A concept analysis of self-monitoring. J Adv
Nurs 2007;57:339–50.
65. Dodd M, Janson S, Facione N, et al. Advancing the science of
symptom management. J Adv Nurs 2001;33:668–76.
66. Girdler SJ, Boldy DP, Dhaliwal SS, et al. Vision self-management
for older adults: a randomised controlled trial. Br J Ophthalmol
2010;94:223–8.
67. Newbould J, Taylor D, Bury M. Lay-led self-management in chronic
illness: a review of the evidence. Chronic Illn 2006;2:249–61.
68. Mackey L, Doody C, Werner E, et al. Self-management skills in
chronic disease management: what role does health literacy have?
Med Decis Making 2016;36:18.
69. Warsi A, Wang PS, LaValley MP, et al. Self-management
education programs in chronic disease: a systematic review
and methodological critique of the literature. Arch Intern Med
2004;164:1641–9.
70. Mold JW, Blake GH, Becker LA. Goal-oriented medical care. Fam
Med 1991;23:46–51.
71. Reuben DB, Tinetti ME. Goal-oriented patient care--an alternative
health outcomes paradigm. N Engl J Med 2012;366:777–9.
72. Huygens MW, Vermeulen J, Swinkels IC, et al. Expectations and
needs of patients with a chronic disease toward self-management
and eHealth for self-management purposes. BMC Health Serv Res
2016;16:232.
73. Lawn S, Battersby M, Lindner H, et al. What skills do primary health
care professionals need to provide effective self-management
support?Seeking consumer perspectives. Aust J Prim Health
2009;15:37.
74. Lenker SL, Lorig K, Gallagher D. Reasons for the lack of
association between changes in health behavior and improved
health status: an exploratory study. Patient Educ Couns
1984;6:69–72.
75. Cronin P, Ryan F, Coughlan M. Concept analysis in healthcare
research. Int J Ther Rehabil 2010;17:62–8.
76. Sedgwick P. Snowball sampling. BMJ 2013;347:f7511.
77. Pols RG, Battersby MW, Regan-Smith M, et al. Chronic condition
self-management support: proposed competencies for medical
students. Chronic Illn 2009;5:7–14.
78. Brashers DE, Haas SM, Neidig JL. The patient self-advocacy scale:
measuring patient involvement in health care decision-making
interactions. Health Commun 1999;11:97–121.
79. Carver CS, Scheier MF, Weintraub JK. Assessing coping strategies: a
theoretically based approach. J Pers Soc Psychol 1989;56:267–83.
80. Sherbourne CD, Stewart AL. The MOS social support survey. Soc
Sci Med 1991;32:705–14.
81. Kielhofner G. Model of human occupation, theory and application. 4
edn. Philadelphia: Lippincott Williams and Wilkins, 2008.
82. Ludman EJ, Simon GE, Rutter CM, et al. A measure for assessing
patient perception of provider support for self-management of
bipolar disorder. Bipolar Disord 2002;4:249–53.
83. Van de Velde D, Coorevits P, Sabbe L, et al. Measuring participation
as dened by the World Health Organization in the International
Classication of Functioning, Disability and Health. Psychometric
properties of the Ghent Participation Scale. Clin Rehabil
2017;31:379–93.
84. Cardol M, de Haan RJ, van den Bos GAM, et al. The development of
a handicap assessment questionnaire: the Impact on Participation
and Autonomy (IPA). Clin Rehabil 1999;13:411–9.
85. Fillenbaum GG. Multidimensional functional assessment of
older adults: the Duke Older Americans Resources and Services
Procedures. Erlbaum, Hillsdale, N.J, 1988.
86. Teal CR, Haidet P, Balasubramanyam AS, et al. Measuring the quality
of patients' goals and action plans: development and validation of a
novel tool. BMC Med Inform Decis Mak 2012;12:152.
87. Mayberry LS, Gonzalez JS, Wallston KA, et al. The ARMS-D out
performs the SDSCA, but both are reliable, valid, and predict
glycemic control. Diabetes Res Clin Pract 2013;102:96–104.
88. Eklund M, Brunt D. Measuring opportunities for engaging in
meaningful home-based activities in housing services for people
with psychiatric disabilities: Development of the perceived
meaning of activity in housing (PMA-H). Eval Health Prof
2017;163278717727333.
89. Grafgna G, Barello S, Bonanomi A, et al. Measuring patient
engagement: development and psychometric properties of the
Patient Health Engagement (PHE) Scale. Front Psychol 2015;6:274.
on 20 July 2019 by guest. Protected by copyright.http://bmjopen.bmj.com/BMJ Open: first published as 10.1136/bmjopen-2018-027775 on 16 July 2019. Downloaded from
... A complex interaction of intrinsic and extrinsic barriers can hinder engagement in such behaviors. Intrinsically, individuals must have selfefficacy, locus of control, and health literacy to actively undertake responsibility for their care (Van de Velde et al., 2019). Extrinsically, individuals must be fully informed about their CPI and the importance of self-management behaviors (Cheen et al., 2019). ...
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Chronic illnesses, such as Diabetes and Epilepsy, impact millions globally. Despite the burden of chronic illnesses, a medical hierarchy exists, with many illnesses undervalued in society, hence allocated minimal research funding. This bias disproportionately affects health outcomes for women. This research provides a novel exploration into the lives of women with chronic illnesses of varying levels of prestige, examining commonalities and variations among their illness experience, and the coping strategies they employ to manage their emotional well-being. Six semi-structured interviews were conducted and analysed using Interpretative Phenomenological Analysis. Two superordinate themes were developed: “A fractured reality” and “A restrained reality.” Commonalities across the narrative were manifested in structural inequalities and coping strategies, however, illnesses lower on the prestige hierarchy were evident with an existential conflict with the illness identity. This research demonstrates the structural discrimination of the gender construct and the disparities experienced by women with conditions of lower prestige.
... Interventions provided via real-time remote monitoring, video-conferencing and teleconsulting were also included. The intervention's contents had to comprise contextually relevant educational information specific to haemodialysis patients or their self-management, as defined by Van de Velde et al. (2019). The interventions may vary in frequency and duration. ...
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Context:Self-management (SM) in hemodialysis (HD) is a critical concept that empowers patients to actively participate in their health care. Despite its significance, the concept remains unclear, hindering its effective application in clinical settings. Clarifying SM can enhance nursing knowledge and contribute to improved care for HD patients. This study aimed to analyze the concept of SM in HD patients. Evidence Acquisition:The concept analysis was conducted according to Walker & Avant's eight-stage approach. To identify relevant literature, the keywords "self-management", "hemodialysis", and "End-Stage Renal Diseases" were searched in ProQuest, PubMed, Scopus, Embase, and MEDLINE databases, as well as Google Scholar and library resources until November 2024. Results:In hemodialysis patients, SM is characterized by real-time health adjustment, self-monitoring, lifestyle integration, adaptive problem-solving, therapeutic engagement, self-regulation, and emotional resilience and coping. The antecedents of SM in patients with HD are related to the patient and the health care system. Improved quality of life is the most important consequence of SM in HD patients. Furthermore, SM has positive effects on the health care system for HD patients. Conclusions:The SM in HD patients is shaped by motivation, social support, and healthcare accessibility. Effective SM enhances quality of life and optimizes healthcare efficiency by reducing hospitalizations. Integrating structured education, psychological support, and digital health tools can strengthen self-efficacy, therapeutic engagement, and real-time monitoring. Interdisciplinary collaboration is essential for implementation. Future research should examine long-term SM outcomes and address barriers to effective integration in diverse HD populations.
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Background A dramatic increase in the use of videoconferencing occurred as a response to the COVID-19 pandemic, including delivery of chronic disease management programs. With this increase, clients’ openness to and confidence in receiving any type of telehealth care has dramatically improved. However, the rapidity of the response was accomplished with little time to learn from existing knowledge and research. Objective The purpose of this scoping review was to identify features, barriers, and facilitators of synchronous videoconference interventions that actively engage clients in the management of chronic conditions. Methods Using scoping review methodology, MEDLINE, CINAHL, and 6 other databases were searched from 2003 onward. The included studies reported on structured, one-on-one, synchronous videoconferencing interventions that actively engaged adults in the management of their chronic conditions at home. Studies reporting assessment or routine care were excluded. Extracted text data were analyzed using thematic analysis and published taxonomies. Results The 33 included articles reported on 25 distinct programs. Most programs targeted people with neurological conditions (10/25, 40%) or cancer (7/25, 28%). Analysis using the Taxonomy of Every Day Self-Management Strategies and the Behavior Change Technique Taxonomy version 1 identified common program content and behavior change strategies. However, distinct differences were evident based on whether program objectives were to improve physical activity or function (7/25, 28%) or mental health (7/25, 28%). Incorporating healthy behaviors was addressed in all programs designed to improve physical activity or function, whereas only 14% (1/7) of the programs targeting mental health covered content about healthy lifestyles. Managing emotional distress and social interaction were commonly discussed in programs with objectives of improving mental health (6/25, 24% and 4/25, 16%, respectively) but not in programs aiming at physical function (2/25, 8% and 0%, respectively). In total, 13 types of behavior change strategies were identified in the 25 programs. The top 3 types of strategies applied in programs intent on improving physical activity or function were feedback and monitoring, goals and planning, and social support, in contrast to shaping knowledge, regulation, and identity in programs with the goal of improving mental health. The findings suggest that chronic condition interventions continue to neglect evidence that exercise and strong relationships improve both physical and mental health. Videoconference interventions were seen as feasible and acceptable to clients. Challenges were mostly technology related: clients’ comfort, technology literacy, access to hardware and the internet, and technical breakdowns and issues. Only 15% (5/33) of the studies explicitly described compliance with health information or privacy protection regulations. Conclusions Videoconferencing is a feasible and acceptable delivery format to engage clients in managing their conditions at home. Future program development could reduce siloed approaches by adding less used content and behavior change strategies. Addressing client privacy and technology issues should be priorities.
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Healthcare policy in developed countries has, in recent years, promoted self-management among people with long-term conditions. Such policies are underpinned by neoliberal philosophy, as seen in the promotion of greater individual responsibility for health through increased support for self-management. Yet still little is known about how self-management is understood by commissioners of healthcare services, healthcare professionals, people with long-term conditions and family care-givers. The evidence presented here is drawn from a two-year study, which investigated how self-management is conceptualised by these stakeholder groups. Conducted in the UK between 2013 and 2015, this study focused on three exemplar long-term conditions, stroke, diabetes and colorectal cancer, to explore the issue. Semi-structured interviews and focus groups were carried out with 174 participants (97 patients, 35 family care-givers, 20 healthcare professionals and 22 commissioners). The data is used to demonstrate how self-management is framed in terms of what it means to be a ‘good’ self-manager. The ‘good’ self-manager is an individual who is remoralised; thus taking responsibility for their health; is knowledgeable and uses this to manage risks; and, is ‘active’ in using information to make informed decisions regarding health and social wellbeing. This paper examines the conceptualisation of the ‘good’ self-manager. It demonstrates how the remoralised, knowledgeable and active elements are inextricably linked, that is, how action is knowledge applied and how morality underlies all action of the ‘good’ self-manager. Through unpicking the ‘good’ self-manager the problems of neoliberalism are also revealed and addressed here.
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Over the past decades, there has been a paradigm shift from a purely biomedical towards a bio-psycho-social (BPS) conception of disability and illness, which has led to a change in contemporary healthcare. However, there seems to be a gap between the rhetoric and reality of working within a BPS model. It is not clear whether healthcare professionals show the necessary skills and competencies to act according to the BPS model.The aim of this study was (1) to develop a scale to monitor the BPS competencies of healthcare professionals, (2) to define its factor-structure, (3) to check internal consistency, (4) test-retest reliability and (5) feasibility.Item derivation for the BPS scale was based on qualitative research with seven multidisciplinary focus groups (n = 58) of both patients and professionals. In a cross-sectional study design, 368 healthcare professionals completed the BPS scale through a digital platform. An exploratory factor analysis was performed to determine underlying dimensions. Statistical coherence was expressed in item-total correlations and in Cronbach's α coefficient. An intra-class-correlation coefficient was used to rate the test-retest reliability.The qualitative study revealed 45 items. The exploratory factor analysis showed five underlying dimensions labelled as: (1) networking, (2) using the expertise of the client, (3) assessment and reporting, (4) professional knowledge and skills and (5) using the environment. The results show a good to strong homogeneity (item-total ranged from 0.59 to 0.79) and a strong internal consistency (Cronbach's α ranged from 0.75 to 0.82). ICC ranged between 0.82 and 0.93.The BPS scale appeared to be a valid and reliable measure to rate the BPS competencies of the healthcare professionals and offers opportunities for an improvement in the healthcare delivery. Further research is necessary to test the construct validity and to detect whether the scale is responsive and able to detect changes over time.
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Background: Self-management is considered as an essential component of chronic care by primary care professionals. eHealth is expected to play an important role in supporting patients in their self-management. For effective implementation of eHealth it is important to investigate patients' expectations and needs regarding self-management and eHealth. The objectives of this study are to investigate expectations and needs of people with a chronic condition regarding self-management and eHealth for self-management purposes, their willingness to use eHealth, and possible differences between patient groups regarding these topics. Methods: Five focus groups with people with diabetes (n = 14), COPD (n = 9), and a cardiovascular condition (n = 7) were conducted in this qualitative research. Separate focus groups were organized based on patients' chronic condition. The following themes were discussed: 1) the impact of the chronic disease on patients' daily life; 2) their opinions and needs regarding self-management; and 3) their expectations and needs regarding, and willingness to use, eHealth for self-management purposes. A conventional content analysis approach was used for coding. Results: Patient groups seem to differ in expectations and needs regarding self-management and eHealth for self-management purposes. People with diabetes reported most needs and benefits regarding self-management and were most willing to use eHealth, followed by the COPD group. People with a cardiovascular condition mentioned having fewer needs for self-management support, because their disease had little impact on their life. In all patient groups it was reported that the patient, not the care professional, should choose whether or not to use eHealth. Moreover, participants reported that eHealth should not replace, but complement personal care. Many participants reported expecting feelings of anxiety by doing measurement themselves and uncertainty about follow-up of deviant data of measurements. In addition, many participants worried about the implementation of eHealth being a consequence of budget cuts in care. Conclusion: This study suggests that aspects of eHealth, and the way in which it should be implemented, should be tailored to the patient. Patients' expected benefits of using eHealth to support self-management and their perceived controllability over their disease seem to play an important role in patients' willingness to use eHealth for self-management purposes.
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Aim: To report: 1) an analysis of the concepts of coping, adaptation and self-management in the context of managing a neurological condition; and 2) the overlap between the concepts. Background: The three concepts are often confused or used interchangeably. Understanding similarities and differences between concepts will avoid misunderstandings in care. The varied and often unpredictable symptoms and degenerative nature of neurological conditions make this an ideal population in which to examine the concepts. Design: Concept analysis. Data sources: Articles were extracted from a large literature review about living with a neurological condition. The original searches were conducted using SCOPUS, EMBASE, CINAHL and Psych INFO. Seventy-seven articles met the inclusion criteria of: 1) original article concerning coping, adaptation or self-management of a neurological condition; 2) written in English; and 3) published between 1999 - 2011. Methods: The concepts were examined according to Morse's concept analysis method; structural elements were then compared. Results: Coping and adaptation to a neurological condition showed significant overlap with a common focus on internal management. In contrast, self-management appears to focus on disease controlling and health-related management strategies. Coping appears to be the most mature concept, whereas self-management is least coherent in definition and application. Conclusion: All three concepts are relevant for people with neurological conditions. Health-care teams need to be cautious when using these terms to avoid miscommunication and to ensure clients have access to all needed interventions. Viewing the three concepts as a complex whole may be more aligned with client experience. This article is protected by copyright. All rights reserved.
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There is a scarcity of instruments for assessing opportunities for residents with psychiatric disabilities to engage in meaningful home-based activities. We thus developed the Perceived Meaning of Activity in Housing (PMA-H), containing four subscales (activity opportunities, social interaction, developing as a person, and organization and planning). The aim of the study was to investigate the content validity, utility, internal consistency and concurrent and criterion validity of the PMA-H, as well as possible floor and ceiling effects. One hundred and fifty-five residents in supported housing (SH) and 111 in ordinary housing with support (OHS) completed the PMA-H. The SH group also competed the Community-Oriented Programs Environment Scale (COPES). A majority of the participants found the content of the PMA-H relevant, easy to complete, and the time for completion as reasonable. Internal consistency varied between 0.85 and 0.92 for the subscales. Logical associations with COPES indicated construct validity. The subscales social interaction and developing as a person could discriminate between the SH and OHS groups, whereas activity opportunities could not. No floor or ceiling effects were found. This study indicated adequate initial psychometric properties of the PMA-H. It can thus be used in housing settings to assess the residents’ perceived opportunities for meaningful activity in the housing context.
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Background: Self-management is considered as an essential component of chronic care by primary care professionals. eHealth is expected to play an important role in supporting patients in their self-management. For effective implementation of eHealth it is important to investigate patients’ expectations and needs regarding self-management and eHealth. The objectives of this study are to investigate expectations and needs of people with a chronic condition regarding self-management and eHealth for self-management purposes, their willingness to use eHealth, and possible differences between patient groups regarding these topics. Methods: Five focus groups with people with diabetes (n = 14), COPD (n = 9), and a cardiovascular condition (n = 7) were conducted in this qualitative research. Separate focus groups were organized based on patients’ chronic condition. The following themes were discussed: 1) the impact of the chronic disease on patients’ daily life; 2) their opinions and needs regarding self-management; and 3) their expectations and needs regarding, and willingness to use, eHealth for self-management purposes. A conventional content analysis approach was used for coding. Results: Patient groups seem to differ in expectations and needs regarding self-management and eHealth for self-management purposes. People with diabetes reported most needs and benefits regarding self-management and were most willing to use eHealth, followed by the COPD group. People with a cardiovascular condition mentioned having fewer needs for self-management support, because their disease had little impact on their life. In all patient groups it was reported that the patient, not the care professional, should choose whether or not to use eHealth. Moreover, participants reported that eHealth should not replace, but complement personal care. Many participants reported expecting feelings of anxiety by doing measurement themselves and uncertainty about follow-up of deviant data of measurements. In addition, many participants worried about the implementation of eHealth being a consequence of budget cuts in care. Conclusion: This study suggests that aspects of eHealth, and the way in which it should be implemented, should be tailored to the patient. Patients’ expected benefits of using eHealth to support self-management and their perceived controllability over their disease seem to play an important role in patients’ willingness to use eHealth for self-management purposes.