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CONCEPT ANALYSIS

Perceived HIV symptom manageability: synthesis of a new use for

a known concept

Katharina Fierz, Dunja Nicca & Rebecca Spirig

Accepted for publication 19 May 2012

Correspondence to R. Spirig:

e-mail: rebecca.spirig@usz.ch

Katharina Fierz MNS RN

Scientific Collaborator

Institute of Nursing Science, University of

Basel, Switzerland, and

Department of Nursing and Allied Health

Professions, University Hospital Basel,

Switzerland

Dunja Nicca PhD RN

Scientific Officer

Institute of Nursing Science, University of

Basel, Switzerland, and

Department of Infectious Diseases, Cantonal

Hospital St. Gallen, Switzerland

Rebecca Spirig PhD RN

Head of Department

Institute of Nursing Science, University of

Basel, Switzerland, and

Center of Clinical Nursing Science,

University Hospital Zurich, Switzerland

F I ERZ K . , N ICCA D . & SP IR IG R . ( 2 0 1 3 ) Perceived HIV symptom manageabil-

ity: synthesis of a new use for a known concept. Journal of Advanced Nursing

69(1), 229–241. doi: 10.1111/j.1365-2648.2012.06068.x.

Abstract Aim. To report the synthesis of the concept of perceived symptom manageability.

Background. Common symptom assessment parameters fail to address concerns

about the impact of symptoms on everyday life, overall functioning, or threats to

individuals living with the human immunodeficiency virus. We claim that the

concept of ‘perceived symptom manageability’ integrates these important

dimensions of the patients’ experience of their symptoms.

Data sources. Online databases, thesauri, and dictionaries were accessed in

January 2012. A free search was performed scanning the PubMed, CINAHL, and

PsycINFO databases for entries from 2001–2011 using ‘manageability’ in the title

or abstract as a search term.

Design. Text-based analysis.

Review methods. We followed the steps delineated by Walker and Avant for

concept synthesis. Uses of the concept ‘manageability’ were identified and listed,

meaningful usage clusters were generated, and a preliminary working definition

was created.

Results. Social resources and individual interpretation were relevant in view of

managing a difficult situation, thus positioning ‘manageability’ in a social and

interpretational context that exceeded objective control. We preliminarily defined

perceived symptom manageability as ‘the extent of the perceived ability to bring

social and personal resources into play to successfully deal with or control

symptoms, despite difficulties’.

Conclusion. We believe that our working definition represents a promising start

to understand and address the manageability problems that individual patients

face regarding particular symptoms and may serve as a basis to identify not only

symptoms but also areas of intervention that are of most concern to individual

patients.

Keywords: concept analysis, human immunodeficiency virus, manageability, nurs-

ing, symptoms

JAN JOURNAL OF ADVANCED NURSING

Introduction

In countries where antiretroviral therapy is available and

affordable, human immunodeficiency virus (HIV) is

acknowledged as a long-term illness. As with many other

chronically ill populations, persons living with human

immunodeficiency virus (PLWH) can be challenged by a host

of symptoms due to comorbidities, the illness itself, and the

side effects of medications in the course of their illness tra-

jectory. Identifying symptoms that need management from

the patients’ perspective is, thus, an integral part of clinical

follow-up visits in any social or political context. In a

research project conducted to better understand the mecha-

nisms underlying the symptoms and medication management

of PLWH (Nicca et al. 2011), we realized that the ability to

manage symptoms in their daily routine is of great impor-

tance to this population and that this perceived manageabil-

ity of symptoms is crucial to the overall experience of

symptoms by PLWH. We also realized that the symptom

experience parameters commonly used by providers to iden-

tify symptoms needing management, i.e. symptom frequency

and severity/intensity, bother, or distress, failure to address

the concerns of PLWH about integrating their symptoms

into everyday life, and overall functioning (Willard 2006,

Hobbs 2009). Disagreement on symptoms needing manage-

ment may occur (Apollo et al. 2006, Edelman et al. 2010).

Therefore, we postulate that the parameters used to identify

symptoms needing management ought to incorporate the

individual interpretation of PLWH related to their daily liv-

ing with symptoms and propose ‘perceived symptom man-

ageability’ to be such a term. To our knowledge, the term

‘manageability’ has not been described or used in the context

of symptoms to date; therefore, an exploration and descrip-

tion of the concept are needed. Our aim was to explore ‘per-

ceived symptom manageability’ and establish a working

definition of this concept.

Background

As the collaboration between PLWH and healthcare providers

has become a core issue in healthcare encounters and is partic-

ularly important in the field of HIV care (Fehr et al. 2005), we

conducted a mixed methods research project (Nicca et al.

2011) in an effort to better understand the collaboration

between providers and patients in view of medication and

symptom management. We based our thinking on the Com-

mon SenseModel (CSM) of Leventhal et al. (1992) and specif-

ically on its adaptation for PLWH suggested by Spirig et al.

(2005), which provides an advanced framework for the care

of PLWH. While conducting interviews for this project, we

discovered that PLWH are actively involved in designing and

negotiating symptom management strategies; however,

patients and healthcare providers do not always agree on the

symptoms needing management (Apollo et al. 2006, Edelman

et al. 2010). This divergence may impede effective illness

management and diminish the quality of the healthcare

encounter (Jackson&Kroenke 2001).

To understand potential sources of disagreement in view

of the symptoms needing management, subjective illness

theories such as the CSM (Leventhal et al. 1980, 1984) and

specifically its adaptation by Spirig et al. (2005) are useful

frameworks. These theories underscore the individuality

inherent in the interpretation of an illness and its symp-

toms. In the CSM, Leventhal et al. (1980, 1984) state that

first, internal and external stimuli generate an individual,

cognitive representation of the problem and emotions. Emo-

tions and representation are cues that lead to separate, yet

intertwined, coping actions and the evaluation of outcomes

in both dimensions, which feed back into representations

and generate further emotions, finally representing a self-

regulatory system. Both processing tracks, i.e. the emotional

and the cognitive, are influenced by self and the social con-

text. To understand the drivers of patient behaviour, it is

crucial for healthcare providers to be aware of a patient’s

illness representation, which, in turn, shapes their actions

to confront the illness and form the basis for outcome inter-

pretation. Disagreements may occur within the attributes of

illness representation, i.e. identity, time-line, consequences

(physical, social, and economic), antecedent causes, and the

potential for cure and/or control of a threat. Furthermore,

according to the authors, diverging notions of problem

space (i.e. the representation-coping-evaluation pathways),

culturally diverging interpretations of the illness, or incon-

sistencies with an individual’s personality may result in

divergence between patients and providers regarding treat-

ment. In fact, the lay interpretation of the cause, effect, and

controllability of an illness or symptom determines how

people react to the threat and cope with the unpleasant sit-

uation (Leventhal et al. 1992). As the self-regulatory system

is coherent in itself and consistent for an individual patient,

it is crucial that providers are aware that a patient’s inter-

pretations of their emotional and cognitive representation-

coping-evaluation pathways (i.e. the patient’s problem

space) may differ from state-of-the art interpretations and

cannot be altered without acknowledging its consistency for

the patient.

For PLWH, social support has been established as being

crucial to successful symptom and illness management (Spi-

rig et al. 2005) and was integrated as a core determinant

for successful symptom management by these authors into

K. Fierz et al.

the CSM. Furthermore, symptom manageability was intro-

duced as a variable representing the cognitive and emo-

tional evaluation of individual symptom management

endeavours by addressing the overall success of these

actions as perceived by the patient, which will, eventually,

affect further actions, health-related quality of life, clinical

parameters, and adherence.

We suggest that discrepancies between providers and

PLWH about symptoms needing management occur due

to their different perspectives when evaluating symptom

management outcomes. PLWH and providers are both

concerned about identifying those symptoms that need

management and to initiate management actions and a

reduction in symptom severity (intensity), and their fre-

quency of occurrence is commonly interpreted as manage-

ment success. However, this perspective fails to address

the challenges posed by the symptoms (Hobbs 2009),

which are subject to the patient’s individual evaluation. In

a recent study investigating adherence and attitudes

towards haemodialysis in patients with end-stage renal dis-

ease, Karolich and Ford (2010) found that the subjective

meaning attributed to the illness greatly influenced how

patients understand and manage their chronic condition.

Furthermore, there is evidence that interventions based on

a patient’s illness representation can successfully promote

their well-being (Hill et al. 2007) and adherence to medi-

cation (Phillips et al. 2012). Integrating a concept that

addresses a patient’s lived experience of managing their

symptom(s) in addition to ‘objective’ criteria to identify

symptoms needing management may contribute to mutual

understanding and improved satisfaction with the health-

care encounter (Jackson & Kroenke 2001). On the basis

of our clinical observation that PLWH often use ‘manage-

able’ when describing their symptoms, we considered ‘per-

ceived symptom manageability’ as a concept that expands

the focus of symptom assessment from mere symptom

expression to a comprehensive understanding of the prob-

lem space perceived by PLWH, as depicted by Spirig et al.

(2005).

Data sources

If a concept is already used, but not described in a specific

area or context, concept synthesis is deemed especially

useful (Walker & Avant 2005). By exploring broadly as

many current uses of a concept as possible, summarizing

core aspects of the concept and translating it to a new

area of use may add a new perspective to this specific

area. According to these authors, concept synthesis

precedes the well-known approach of concept analysis,

which is used if a concept is common knowledge, has

been used in different areas in many situations, became

blurred, or needs sharpening. Concept synthesis also com-

plements the process of concept derivation, where a con-

cept is transferred from one domain to another where it

has not yet been used (e.g. from industry to nursing). To

expand and target the use of ‘manageability’ to HIV

symptoms and to preliminarily define ‘perceived symptom

manageability’, we employed concept synthesis as

described by Walker and Avant (2005).

Our concept synthesis is based on online data sources.

The steps to perform concept synthesis, as described by

Walker and Avant (2005) and how the steps were followed,

are summarized in Table 1. As a first step in concept syn-

thesis and to achieve familiarity with the topic, Walker and

Avant (2005) suggest the use of all possible sources of

information to detect as many current uses of the concept

as possible. Our sources were PubMed, CINAHL, Psy-

cINFO (entries within the last 10 years (2001–2011), ‘man-

ageability’ in the title or abstract); the Google search engine

(entries within 24 months; search term ‘manageability’ in

the title), and online versions of dictionaries and thesauri

which were scanned using the search terms ‘to manage’,

‘manageability’, ‘ability’, and ‘manageable’ (Table 1). To

allow a broad perspective on concept use, the search was

not limited to any area of use.

In a second step, we listed the uses of ‘manageability’, ‘to

manage’, and ‘manageable’ as retrieved from online the-

sauri and dictionaries. Similar uses were grouped and same

uses were discarded. Abstracts retrieved from online data-

bases (PubMed, CINAHL, and PsycINFO) were scanned

for the use of ‘manageability’ and emerging groups of uses

were compared with the categories identified in online the-

sauri and dictionaries and assigned accordingly. Abstracts

were then scanned in each semantic group and included in

our synthesis if the use of ‘manageability’ provided infor-

mation on the meaning of the concept from a person’s/

patient’s perspective, if the use of the concept was either

related to health or a condition or was transferable to the

health context. The meaning of manageability was summa-

rized in each group of uses.

To extend the information on the uses of the concept

to non-scientific sources, the Google search engine was

employed and citations were scanned for additional uses

of the concept. In the next step, we combined the core

information from summarized evidence and a working

definition of the use of the concept with symptoms was

created.

JAN: CONCEPT ANALYSIS Perceived symptom manageability

Results

Steps 1 and 2: Achieve familiarity with the topic and

identify current uses of the concept; list the uses and

combine them into meaningful clusters

Online versions of English dictionaries and a thesaurus

We accessed four different online dictionaries and one the-

saurus: Wiktionary (http://en.wiktionary.org/wiki/Manage,

http://en.wiktionary.org/wiki/manageability), Merriam-Web

ster Online Dictionary (http://www.merriam-webster.com/

dictionary), Merriam-Webster Online Thesaurus (http://

www.merriam-webster.com/thesaurus), Oxford English Dic-

tionary (http://www.oed.com), and Houghton-Mifflin Online

Dictionary (http://ahdictionary.com/word/search.html): All

electronic sources were accessed on 2 January 2012. ‘Manage-

ability’ was referred to as ‘the quality or condition of being

manageable’ (http://www.oed.com) and not further discussed

in any of the sources as a noun. Therefore, we performed all

further steps using the descriptions of ‘to manage’, mainly

described as a transitive verb with some intransitive uses

(Table 2). Uses were summarized into four broad semantic

categories: ‘to act as a manager’, ‘to control the movements or

actions of something (tool)’, ‘to exert one’s authority: control

someone (animal or human)’, and ‘to succeed in accomplish-

ing or achieving, especially with difficulty’ (Table 2). As the

only source to do so, the Oxford English Dictionary listed the

specific use of ‘to manage’ in the healthcare setting as follows:

‘to control or relieve (a disease or disorder); to look after

(a patient, case, or client) as appropriate. Also especially in

later use: to provide or coordinate (a suitable course of action

for the care of such a person)’ (http://www.oed.com).

Literature search PubMed (National Library of Medicine),

CINAHL, and PsycINFO

The literature search of PubMed, CINAHL, and PsycINFO

was performed for the years 2001–2011 with ‘manageabil-

ity’ in the title or abstract. A total of 320 abstracts were

listed, of which 86 were identified as duplicates and were

discarded, resulting in 234 abstracts for closer inspection.

Six citations were additionally discarded because ‘manage-

ability’ was not in their title or abstract. Finally, 228

abstracts were checked for the use of the term ‘manageabil-

ity’ and clustered according to the use of this term. Table 2

provides an overview on the combined uses of the concept

in dictionaries and the assignment of abstracts retrieved

from PubMed, CINAHL, and PsycINFO.

Open internet search using the Google search engine

The Google search returned 777 links when ‘manageability’

was entered. These were compatible with the already dis-

covered uses and no new uses were detected.

Table 1 Steps of the concept synthesis.

Steps described by Walker

and Avant (2005) Data source Action Process

Step 1: achieve familiarity

with the topic; identify

current uses of the

concept

Online versions

of thesauri and dictionaries

Search term: ‘to manage’,

‘manageability’, ‘ability’,

and ‘manageable’

Results of step 1

inform step 2

PubMed, Cinahl

and PsycINFO

Search term: ‘manageability

[Title and Abstract]’

Google search engine Search term:

‘manageability’

Step 2: list and combine

uses of the concept

Results from

step 1: abstracts

and definitions

Clustering of uses listed in

dictionaries and thesaurus;

reviewing abstracts, listing of

uses of manageability in

abstracts and clustering

of abstracts presenting

similar uses

Results of step 2

inform the definition

of the new use

Steps 3a and 3b: definition

of the new use

Reduced uses

(results from

step 2)

Summarizing meaning of

manageability within

semantic clusters; transfer

of uses to symptoms and

creation of the preliminary

working definition

K. Fierz et al.

T a b le

2 S te p 2 : L is ti n g a n d co m b in in g th e u se s o f th e co n ce p t in

d ic ti o n a ri es , a ss ig n m en t o f cl u st er ed

a b st ra ct s, a n d a rt ic le s in te g ra te d in

sy n th es is .

In tr a n si ti v e u se s

C a te g o ri es

o f ‘m

a n a ge a b il it y ’

u se

li st ed

in d ic ti o n a ri es

S ea rc h re su lt s: cl u st er ed

a b st ra ct s (n u m b er

o f

a b st ra ct s)

A rt ic le s in te g ra te d in

th e w o rk in g d efi n it io n ,

re p o rt in g p er ce iv ed

m a n a g ea b il it y

T o d ir ec t a ff a ir s o r in te re st s,

b e in

ch a rg e o f (m

a n a g e a

co m p a n y )* ,†

T o lo o k a ft er

a n d m a k e d ec is io n s a b o u t‡

A ls o : to

h a n d le

o r d ir ec t w it h a d eg re e o f sk il l§

T o co n d u ct , ca rr y o n , su p er v is e,

co n tr o l‡ ,* *

‘A ct

a s m a n a g er ’

IT a n d e- le a rn in g (9 )

P ro je ct

(5 )

P ro ce ss es , n o n -m

ed ic a l (5 )

S er v ic es

(1 1 )

H a ir

(8 )

–

R is k (1 2 )

E k lo f (2 0 0 2 ), P et er s- G u a ri n et

al . (2 0 1 2 ), S a n n e (2 0 0 8 ),

S ta v e et

al . (2 0 0 6 )

M ed ic a l p ro ce ss es

(2 4 )

A ra p a k is et

al . (2 0 0 5 ), B er g k et

al . (2 0 0 4 ),

P er io li et

al . (2 0 0 9 )

O cc u p a ti o n a l d em

an d s

(8 )

–

T o h a n d le , w ie ld

(a to o l, w ea p o n )*

T o d ir ec t o r co n tr o l th e u se

o f, h a n d le

(a m a ch in e to o l) †

T o co n tr o l th e m o v em

en ts

o r a ct io n s o f (s o m et h in g )

(= co n tr o l) ¶

T o h a n d le , w ie ld , o r m a k e u se

o f* *

T o co n tr o l th e m o ve m en ts

o r

a ct io n s o f so m et h in g (t o o l) ;

M a te ri a l fo r cl in ic a l u se

(1 0 )

M ed ic a l d ev ic e (7 )

– –

T o m a k e su b m is si v e to

o n e’ s a u th o ri ty , d is ci p li n e,

o r

p er su a si o n †

T o co n tr o l th e b eh a v io u r o f (a

ch il d o r a n im

a l) †, * *

T o tr a in

o r d ir ec t* *

T o ex er t o n e’ s a u th o ri ty :

co n tr o l so m eo n e (a n im

a l o r

h u m a n )

T ra it in

ch il d re n (9 )

P ri so n er s (3 )

W o rk er s (1 )

D is a b le d p er so n s (1 )

H o rs es

(5 )

O th er

(2 )

– – – – – –

T o h a n d le

o r co n tr o l (a

si tu a ti o n o r jo b )*

T o su cc ee d in

d o in g , a cc o m p li sh in g , o r a ch ie v in g

so m et h in g , es p ec ia ll y w it h d if fi cu lt y ; co n tr iv e o r

a rr a n g e†

,¶

T o d ea l o r co p e w it h (s o m et h in g ) u su a ll y sk il fu ll y o r

ef fi ci en tl y (m

a n a g ed

th e cr is is )‡ ,* *

W it h in fi n it iv e:

to b e su cc es sf u l o r sk il fu l en o u gh

to d o

so m et h in g , u su a ll y w it h d if fi cu lt y o r in

th e fa ce

o f

a d v er si ty * *

T o su cc ee d in

a cc o m p li sh in g o r

a ch ie v in g , es p ec ia ll y w it h

d if fi cu lt y

C o n d it io n , si tu a ti o n ,

il ln es s (2 9 )

Jo h a n ss o n et

al . (2 0 0 7 ), K a ro li ch

a n d F o rd

(2 0 1 0 ),

O ls so n O za n n e et

al . (2 0 1 2 ), P o w er

et al . (2 0 1 0 ),

S u n v is so n a n d E k m a n (2 0 0 1 ), W

ik lu n d (2 0 0 8 )

S O C

(7 5 )

St ru ct u re : B er n a b e et

al . (2 0 0 9 ), B en gt ss o n -T o p s et

al .

(2 0 0 5 ), Z im

p ri ch

et al . (2 0 0 6 ), F le n sb o rg -M

a d se n et

al .

(2 0 0 5 , 2 0 0 6 )

P at ie n ts

w it h sp ec ifi c co n d it io n s: Je n se n (2 0 0 1 ),

M a lt er u d a n d H o ll n a g el

(2 0 0 4 ), N y m a n et

al . (2 0 1 2 ),

S tr a n g a n d S tr a n g (2 0 0 1 )

U se

in sc a le

(4 )

A n to n o v sk y (1 9 8 7 ); K en n ed y et

al . (2 0 0 9 );

V in ce n zi

et al . (2 0 0 9 ); R ee ce

et al . (2 0 1 0 ),

H o ll u b et

al . (2 0 1 1 )

T o ta l

2 2 8

In tr an

si ti ve

u se s

JAN: CONCEPT ANALYSIS Perceived symptom manageability

Step 3a: Review and summarize the uses

The uses of ‘manageability’ in the abstracts basically repre-

sented the substantiated transitive uses of ‘to manage’ listed

in the online thesaurus and dictionaries and ‘manageability’

as part of the sense of coherence (SOC) (Table 2).

Finally, 21 articles corresponded to the inclusion criteria

for the concept synthesis and represented a patient/person

experience in the healthcare setting or experiences that

were transferable to this setting. Four articles referred to

the use of the concept as part of a scale. Only one study

group included PLWH (Reece et al. 2010, Hollub et al.

2011). The following paragraphs provide a summary of

concept uses in semantic clusters.

To act as a manager

From two subgroups of this cluster, i.e. risk management

and management of medical processes, we extracted

qualitative information that could be transferable to our

envisioned use of ‘manageability’.

Risk management: The authors investigating the risk-

taking behaviour of fishermen (Eklof 2002) and farmers

(Stave et al. 2006) found that the interviewees engaged in

preventive actions (safety work) if they perceived the

manageability of a risk as low. The finding was that the

interviewees generally underestimated the risk or overesti-

mated their ability to manage such a threat. After group

interventions, both groups perceived risks as less manage-

able. In another qualitative study, communities in the

Philippines were questioned about their perception of flood

hazards. Communities perceived the manageability of a

flood hazard in relation to the community’s capacity and

available coping mechanisms (Peters-Guarin et al. 2012). In

a study on the risk-taking behaviour of railway workers,

Sanne (2008) found that risk-taking was not only related to

the workers’ appraisal of risk manageability but also their

duty to provide a functioning railway to the public.

Manageability in medical processes comprised user-

friendliness, as viewed by the researchers, such as non-

invasive, frameless, and self-adhesive for an X-ray surgery

procedure (Arapakis et al. 2005). Bergk et al. (2004) found,

in a quantitative study, that the frequency and severity of

drug interactions may not be adequate dimensions to assess

the potential risk/harm. The authors state that measuring

potential outcomes irrespective of their manageability may

overestimate the risk arising from drug interactions.

In sum, manageability of a risk or threat, as applied to

studies of fishermen, railway workers, and farmers, was the

perceived ability to deal or cope with a difficult situation.

However, the concept was connected to influencing factors

T a b le

2 (C

o n ti n u ed ).

In tr a n si ti v e u se s

C a te g o ri es

o f ‘m

a n a ge a b il it y ’

u se

li st ed

in d ic ti o n a ri es

S ea rc h re su lt s: cl u st er ed

a b st ra ct s (n u m b er

o f

a b st ra ct s)

A rt ic le s in te g ra te d in

th e w o rk in g d efi n it io n ,

re p o rt in g p er ce iv ed

m a n a g ea b il it y

T o m ee t o n e’ s d a y -t o -d a y n ee d s‡

T o b e a b le

to li v e o r to

d o w h a t is

n ee d ed

b y u si n g w h a t

y o u h a ve

ev en

th o u g h y o u d o n o t h a v e m u ch

T o co p e o r g et

b y ; to

co n tr iv e to

g et

o n w it h so m et h in g

w h ic h is

b a re ly

a d eq u a te * *

T o su cc ee d (d es p it e d if fi cu lt ie s)

in a cc o m p li sh in g a

ta sk * *

In tr a n si ti v e u se

T o co n ti n u e to

ge t al o n g ; ca rr y o n

T h er e w er e n o in tr a n si ti v e u se s in

th e ci te d a b st ra ct s

* W

ik ti o n a ry .

† H o u g h to n -M

if fl in

O n li n e D ic ti o n a ry .

‡ M

er ri a m -W

eb st er

O n li n e T h es a u ru s.

§ M

er ri a m -W

eb st er ’s L ea rn er ’s

D ic ti o n a ry .

¶ M er ri a m -W

eb st er

O n li n e D ic ti o n ar y .

* * O x fo rd

E n g li sh

D ic ti o n a ry .

K. Fierz et al.

such as personal values and social desirability. Moreover,

solely weighting the quantifiable expression of an

occurrence may underestimate the role of manageability.

Procedure manageability was used in the sense of user-

friendliness as viewed by non-patients. The semantic clus-

ters ‘to control the movements or actions of something

(tool)’ and ‘to exert one’s authority: control someone

(animal or human)’ did not provide relevant information

for our purpose.

To succeed in accomplishing or achieving, especially with

difficulty

Under this group of concept uses we assigned articles that

were related to dealing with an illness, condition, or diffi-

cult situation. For patients living with amyotrophic lateral

sclerosis, the constant fluctuation between opportunities

and limitations in an individual’s abilities made managing

the life situation challenging and difficult (Olsson Ozanne

et al. 2012). Creating a new frame of reference for inter-

preting life facilitated the manageability of the illness and

for these patients comprised developing one’s own strategies

to accept the situation, living in the present and the felt

presence and assistance from a supportive network and

authorities. For people living with a substance use disorder,

manageability of their situation was supported by

experiencing coherence in their life, confirmation and

acceptance, and gaining a sense of community and attach-

ment (Wiklund 2008). Connectedness and interactions with

a social network were also fundamental for patients with

myocardial infarction to manage their situation (Johansson

et al. 2007). Being part of a social context and meeting

adequate physical challenges were important factors

supporting the perceived manageability of the illness

situation in patients with Parkinson’s disease (Sunvisson &

Ekman 2001).

In sum, perceiving symptoms may be experienced as chal-

lenging and the main factors supporting the perceived man-

ageability of the situation were connectedness, functional

relationships, and interaction with the social environment.

Furthermore, the ability to constantly develop strategies to

adapt to the fluctuating and unpredictable physical and

mental changes due to a long-term illness emphasized the

volatility and difficulty of the situation.

Use of ‘manageability’ as part of questionnaires

There were 4 questionnaires distinctly employing the con-

cept: The Orientation to Life Questionnaire (Antonovsky

1987), The Perceived Manageability Scale (PMnac) (Ken-

nedy et al. 2009), the Multi-factor Attitude Towards Con-

doms Scale (MFACS) (Reece et al. 2010, Hollub et al.

2011), and the HIV-Symptom Manageability Scale (HIV-

SMS) (Vincenzi et al. 2009).

The Orientation to Life Questionnaire was developed to

measure the sense of coherence, which represents an indi-

vidual’s global attitude towards life and basically describes

what keeps people healthy in a hostile environment. The

SOC encompasses three explanatory concepts: making sense

of what is going on (meaningfulness), understanding (com-

prehensibility), and manageability, which is defined as ‘the

extent to which one perceives that resources are at one’s

disposal which are adequate to meet the demands posed by

the stimuli that bombard one’ (Antonovsky 1987, p. 17).

This global definition of manageability refers to life in gen-

eral and remains abstract. In the questionnaire, manageabil-

ity was operationalized as the perceived ability to trust in

oneself, trust in others, and act and control or overcome an

unpleasant situation. The Orientation to Life Questionnaire

has been employed and evaluated in diverse healthcare con-

texts and countries for many years (Abu-Shakra et al.

2006, Nabi et al. 2008, Wiesmann & Hannich 2011).

Validity evidence in terms of the structure of the question-

naire, however, is inconclusive. The 3-factor structure, as

suggested by Antonovsky, has been examined by numerous

authors: in the Finnish general population, a 1-factor solu-

tion seemed the most adequate (Bernabe et al. 2009),

whereas in patients with schizophrenia, a 4-factor solution

emerged (Bengtsson-Tops et al. 2005). Zimprich et al.

(2006) explored 1107 Swiss students, for which a 2-factor

solution was found, combining ‘manageability’ and ‘com-

prehensibility’. While the construct ‘sense of coherence’ and

the three components of comprehensibility, manageability,

and meaningfulness are well accepted, the operationaliza-

tion of the construct has been criticized and an adaptation

of scale items was suggested (Flensborg-Madsen et al.

2005, 2006).

Perceived manageability in the SOC. Patients with chronic

fatigue syndrome described their lives as increasingly cha-

otic, with lower manageability, comprehensibility, or mean-

ingfulness scores than persons diagnosed with other

enduring illnesses (Jensen 2001). Patients newly diagnosed

with a brain tumour reported that they achieved manage-

ability by actively seeking social support and information.

Despite their insecure situation, these patients constructed

comprehensibility mainly by their own theories and

thoughts (Strang & Strang 2001). Feeling part of the care

process and having personal and social resources at one’s

disposal facilitated coping with health problems among

patients attending a general practice or persons with sub-

stance use disorder (Malterud & Hollnagel 2004, Nyman

JAN: CONCEPT ANALYSIS Perceived symptom manageability

et al. 2012). In sum, although the kind of support may dif-

fer between populations, creating a new frame of reference

to interpret life, the experience of coherence in life, and

being embedded in a community were elements contribut-

ing to the perception of manageability for all groups. The

PMnac was developed by Kennedy et al. (2009) and based

on Antonovsky’s concept to assess the manageability of

spinal cord injury, emphasizing (successful) control as the

core dimension of manageability.

The HIV-SMS (Vincenzi et al. 2009) encompasses a list

of 82 HIV-specific symptoms, medication side effects, and

non-specific symptoms that occur frequently in PLWH. To

assess their perceived ability to manage a specific symptom,

the participants were asked to rate their perception of

symptom manageability for each symptom that occurred

during the prior week on a Likert-type scale that provided

options from 1 ‘very poorly’–6 ‘very well’. However, there

was no information on the definition of perceived symptom

manageability used in the scale. The scale was piloted a few

years ago and preliminary validity evidence on the response

process and test content was established, and the generation

of further validity evidence is underway.

The MFACS (Reece et al. 2010, Hollub et al. 2011)

was developed to fill a gap in previous research on con-

dom use, which had been conducted for specific contexts

or outcomes, e.g. preventing a pregnancy or the transmis-

sion of a disease. The MFACS specifically measures con-

dom use. It encompasses 3 dimensions and covers

cognitive and emotional aspects: perceived effectiveness,

affective issues, and manageability. Condom manageability

not only refers to the actual handling of condoms but also

addresses less clearly defined issues such as dealing with

embarrassment and being a difficult topic between sex

partners.

Step 3b: Creation of the working definition

The group of uses listed in dictionaries and the thesaurus,

‘achievement of something despite difficulties’ or ‘coming to

terms/dealing successfully with difficult situations’ where a

focused, skilfully performed activity with the ultimate goal

of success was described, allowed the application of the

concept to symptoms. Symptom manageability, thus, could

then be summarized as ‘the ability to successfully handle or

deal with symptoms with a degree of skill’.

Uses of the concept identified in empirical evidence

across diverse populations emphasized the importance of

connectedness with a supportive network as a resource to

deal with a condition or a difficult situation. Moreover, the

evidence supported the individuality of the frame of refer-

ence providing the basis to evaluate the manageability of a

situation and the notion that personal strategies to meet a

constantly changing condition influenced its perceived man-

ageability.

The inspection of questionnaires using the concept accen-

tuates the relevance of ‘being in control’ of a condition or

illness situation (Kennedy et al. 2009) and the importance

of emotions and cognition (Reece et al. 2010, Hollub et al.

2011). The generic and abstract formulation of Antonov-

sky’s (1987) definition of manageability presented above

allows the concept to be concretized for its use with symp-

toms. Therefore, ‘the extent to which one perceives that

resources are at one’s disposal which are adequate to meet

the demands posed by the stimuli that bombard one’ (Anto-

novsky 1987, p. 17), served as the basis for our working

definition. The uses of the concept in diverse realms

revealed that the activation of social and personal resources

contributed substantially to the perceived manageability of

a complex situation. By integrating these aspects, our work-

ing definition of ‘perceived HIV symptom manageability’

unfolds as follows. The extent of the perceived ability to

bring social and personal resources into play to successfully

deal with/control symptoms, despite difficulties.

Discussion

There are limitations to the present study. In the almost

complete absence of evidence relating to ‘manageability’ in

PLWH, the transfer of ‘manageability’ to symptoms per-

ceived by PLWH was based on evidence from other chroni-

cally ill populations, even from areas that were not related

to symptoms or illnesses. Moreover, aspects contributing to

the manageability of a challenging situation were investi-

gated in relation to illnesses, but not to symptoms. Thus, its

adaptation to symptoms involves a certain degree of insecu-

rity and interpretation. The working definition is prelimin-

ary and needs further exploration. As it was developed

theoretically, it may be incomplete; therefore, the interpre-

tation of the concept by PLWH and the verification of the

definition relating to symptoms in this population are

important next steps. Further work needs to be done to

relate the value and position of perceived symptom manage-

ability in the broader conceptual model, integrating contex-

tual and outcome variables such as quality of life,

adherence, and social support, as conceptualized by Spirig

et al. (2005).

We undertook this concept synthesis because we realized

that the concerns of PLWH in view of living with symptoms

go beyond alleviation and that commonly used parameters to

measure management success do not sufficiently capture the

K. Fierz et al.

patients’ perspective in view of integrating symptoms into a

daily routine and maintaining a normal life. Our working

definition of ‘perceived symptom manageability’ clearly

exceeds symptom management, which represents a provider

view (Kendall et al. 2011), by focusing on symptom control

as measured by the severity and frequency of symptoms.

‘Deal with’, as formulated in our working definition, explic-

itly integrates the possibility not only to be ‘in control of’

symptoms but also to negotiate, handle, cope with, or learn

to live with symptoms. PLWH often perceive symptoms as

fluctuating and unpredictable, creating difficult situations

that require a high degree of flexibility from PLWH and their

network (Wilson et al. 2002). The working definition of per-

ceived symptom manageability addresses this aspect by

incorporating the degree to which an individual perceives

that they have symptom management strategies at their dis-

posal and the skills to use them to live at ease with their

symptoms. Perceived symptom manageability may be espe-

cially important for symptoms that often involve a person’s

environment or threaten personal integrity. For instance, fati-

gue or vomiting (Chubineh & McGowan 2008, Jong et al.

2010) may impede social contacts or working capacity. Some

patients manage well, some do not, often unrelated to the

severity or frequency of symptoms. Also for skinny arms and

legs, both symptoms attributable to HIV treatment, and the

individual perception of manageability is only partly related

to severity or frequency. Dealing with these symptoms may

be challenging because of the stigma attached to HIV and the

threat to individual integrity inherent in unwanted disclosure

(Power et al. 2003, Reynolds et al. 2006). Assessing the

ability of a PLWH to manage these symptoms may

elucidate symptom-related areas for intervention that

complement symptom alleviation as measured by severity or

frequency.

We claim that ‘manageability’ can be defined for symp-

toms, integrates the subjective evaluation of emotional and

cognitive processes in the face of symptoms, as depicted by

Spirig et al. (2005) and Leventhal et al. (1992), and that it

can be a useful concept to identify symptoms needing man-

agement as perceived by PLWH. The use of the concept in

questionnaires targeting different populations, as well as

the different semantic usages identified in our database

search, provide evidence for the flexibility of the concept

and that its use with symptoms lies within the scope of the

concept. Although the concept is not yet used with PLWH,

there is some evidence that PLWH interpret some HIV

symptoms as threats (Power et al. 2003, Reynolds et al.

2006) or as difficult to deal with (Chubineh & McGowan

2008, Jong et al. 2010), which may impede symptom

manageability. Therefore, we claim that the concept can

also be used with PLWH to identify symptoms needing

management and negotiate strategies, which increase their

perceived ability to manage symptoms.

What is already known about this topic

● Persons living with the human immunodeficiency virus

(HIV) can be confronted with burdensome symptoms

due to the illness itself, medication side effects, and

co-morbid conditions.

● Symptoms needing management in persons living with

HIV are identified using parameters exploring the

expression of symptoms, e.g. frequency, severity/inten-

sity, and bother/distress.

● Although patients often use the expression ‘I manage

well (not well)’ when asked about their life with symp-

toms, the concept of ‘perceived symptom manageabil-

ity’ has not yet been explored.

What this paper adds

● The concept of ‘manageability’ has been used generi-

cally and specifically, but not with regard to symp-

toms; however, manageability is a concept that can be

used with symptoms.

● Manageability of health challenges is consistently asso-

ciated with the availability of a supportive social envi-

ronment and the use of personal resources.

● A working definition of ‘perceived symptom manage-

ability’, based on an open internet search and concept

synthesis, i.e. the extent of the perceived ability to bring

social and personal resources into play to successfully

deal with/control symptoms, despite difficulties.

Implications for practice and/or policy

● ‘Perceived symptom manageability’ represents a prom-

ising complement to the parameters commonly used to

identify symptoms needing management, but should

not be used without inquiring the patients’ interpreta-

tion of the concept.

● Further research exploring attributes of perceived

symptom manageability from the patients’ perspective

is needed to substantiate or refine the working defini-

tion.

● Inquiring the patients’ perception of symptom manage-

ability may elicit concerns not captured by commonly

used parameters assessing symptom severity (intensity)

and frequency and facilitate satisfactory and more

effective patient–provider interactions.

JAN: CONCEPT ANALYSIS Perceived symptom manageability

The importance of a supportive network is evident in the

descriptions of manageability (Sunvisson & Ekman 2001,

Johansson et al. 2007, Wiklund 2008) and thus verifies the

framework suggested by Spirig et al. (2005). Healthcare

providers, among others, represent an important source of

information and support for PLWH (Holzemer 2002). Under-

standing the patient’s interpretation of a symptom by address-

ing its manageability in daily life – the aspect of dealing/living

with symptoms of the working definition –may create an envi-

ronment where healthcare providers and PLWH can establish

a true collaboration. Addressing and discussing patient wor-

ries seemed to facilitate successfully dealing with a symptom,

even if there were limited treatment options (Jenkin et al.

2006, Reynolds et al. 2006). Moreover, studies in HIV popu-

lations have shown that a positive appraisal of illness-related

phenomena supports living successfully with this chronic con-

dition (Bova 2001, Fleishman et al. 2003). However, it is

important to note that merely using ‘manageability’ will not

make the difference and the interpretation of the concept by

providers may still be different from its use by patients (Arapa-

kis et al. 2005, Perioli et al. 2009) and needs exploration. The

manageability of treatable or untreatable and visible or invisi-

ble symptoms would be an interesting area for future research

using the concept.

Emerging evidence that the perception of control and the

ability to deal with symptoms might be relevant to several

outcome measures, e.g. the quality of life or adherence,

points to the importance of our concept for future research,

and patient care. In previous studies of long-term illness

management, perceived control moderated the improvement

of self-efficacy (Jerant et al. 2008), whereas a perceived lack

of control was associated with decreased quality of life

(Sarna et al. 1999), self-care behaviour (Lovejoy et al.

1991), medication adherence (Evans et al. 2000), and

increased distress (Pergami et al. 1993).

Conclusion

The concept synthesis procedure guided our process to

explore the concept of ‘manageability’ and translate its gen-

eric use to a symptom-specific use. Our working definition of

perceived symptom manageability combines symptom con-

trol with two dimensions relating to the continuing challenge

of living with HIV symptoms: (1) the availability of social

resources; and (2) the notion of successfully dealing with

and, thus, integrating emotional and cognitive aspects. Inte-

grating perceived manageability into symptom assessment in

addition to using objective measures focusing on physiologi-

cal state represents, in our opinion, is an interesting approach

for negotiating symptoms that need management in PLWH

and identifying new, patient-defined areas for intervention.

While further research is needed, our working definition is a

promising starting point in developing a measure that might

help to improve the care of PLWH.

Acknowledgements

Mary Beth Happ, PhD, RN, FAAN, for ongoing consulta-

tion and editorial assistance; Manuel Battegay, MD, and

Jacqueline Martin, MNS, for thoughtful reviews and valu-

able input; Professors Kimberly Moody, PhD, RN, and San-

dra Engberg, PhD, RN, FAAN, for process supervision and

continuing feedback.

Funding

This work was supported by unrestricted educational grants

from Nora van Meeuwen-Haefliger Stiftung, Glaxo-Smith-

Kline AG, Merck Sharp & Dohme-Chibret, Roche Pharma

AG, Bristol-Myers Squibb GmbH, Boehringer Ingelheim, the

Swiss National Science Foundation Grant Nr 3346-100884,

and Swiss National Science Foundation Grant Nr 33CSCO-

108787, which supported the Swiss HIVCohort Study.

Conflict of interest

No conflict of interest has been declared by the authors.

Author contributions

All authors meet at least one of the following criteria (rec-

ommended by the ICMJE: http://www.icmje.org/ethi-

cal_1author.html) and have agreed on the final version:

● substantial contributions to conception and design, acqui-

sition of data, or analysis and interpretation of data;

● drafting the article or revising it critically for important

intellectual content.

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Reasons to publish your work in JAN:

• High-impact forum: the world’s most cited nursing journal, with an Impact Factor of 1·477 – ranked 11th of 95 in the 2011 ISI Journal Citation Reports (Social Science – Nursing).

• Most read nursing journal in the world: over 3 million articles downloaded online per year and accessible in over 10,000 libraries worldwide (including over 3,500 in developing countries with free or low cost access).

• Fast and easy online submission: online submission at http://mc.manuscriptcentral.com/jan. • Positive publishing experience: rapid double-blind peer review with constructive feedback. • Rapid online publication in five weeks: average time from final manuscript arriving in production to online publication. • Online Open: the option to pay to make your article freely and openly accessible to non-subscribers upon publication on Wiley Online Library, as well as the option to deposit the article in your own or your funding agency’s preferred archive (e.g. PubMed).

JAN: CONCEPT ANALYSIS Perceived symptom manageability