Evaluating Outcome Domains Assessing Caregivers

of Individuals with Mental Illness: A Review

MARC GELKOPF*
DAVID ROE*
In this article, we describe the properties and consider the outcome dimensions of a col-
lection of self-administered questionnaires that assess caregivers of offspring with mental
illness. To this end, we searched the MEDLINE, Web of Science, and PsycINFO databases,
as well as reference lists of studies published between 1980 and 2012. We reviewed 43
instruments, and found multiple outcome domains, associated with either objective burden
or subjective burden, or both. A number of tools captured additional negative aspects of
caregiving (e.g., strain, stress, and worrying) as well as positive aspects (e.g., personal
growth, strength, support, rewards, and satisfaction), supplemented by measures assessing
caregivers perceptions and attitudes toward their offspring with SMI (e.g., insight, stigma,
and efficacy). This current review of existing measures and their specific domains contrib-
utes to a more comprehensive understanding of the caregiving experience and allows both
clinicians and researchers to select the most appropriate measurement tools for their
purposes.
Keywords: Caregiver Review; Family Caregiver; Self-Report Measures; Serious Mental
Illness
Fam Proc 53:150174, 2014
I
n the last decade, the assessment of client outcomes has become a more common aspect
of mental health service provision (Roe, Gross, Kravetz, Klienman-Baloush, & Rudnick,
2009). Indeed, noteworthy among mental health systems worldwide is the trend of devel-
oping systems to evaluate the effectiveness of their services (Schrank & Slade, 2007;
Slade, Amering, & Oades, 2008).
Prior to the era of deinstitutionalization, the child-parent relationship was believed to
be the source of Serious Mental Illness (SMI). It is now widely recognized, however, that
parents and other family caregivers can play a vital role in helping consumers make pro-
gress toward their recovery goals (Burgess, Pirkis, Coombs, & Rosen, 2011; Lefley, 1996;
Osher, van Kammen, & Zaro, 2001). Thus, during this era, which has seen a shift from
hospital-based to community-based mental health services, the central role of the family
has become increasingly recognized.
Studies on family members have shown that having a relative with SMI often impacts
all aspects of family life; home environment, work, leisure, income, and relationships with
those inside and outside the nuclear family, creating ongoing personal suffering, signifi-
cant direct and indirect costs, and loss of life-time productivity among caregivers (e.g.,
Rose, 1997; Szmukler et al., 1996; Tessler & Gamache, 2000). Previous studies have
*Department of Community Mental Health, University of Haifa, Haifa, Israel.
Correspondence concerning this article should be addressed to Marc Gelkopf, Department of Community
Mental Health, University of Haifa, Mount Carmel, Haifa 31905, Israel. E-mail: emgelkopf@013.net.il.
We thank Dr. Shelly Bakst for her research on the different tools assessed in this study.
150
Family Process, Vol. 53, No. 1, 2014 2013 FPI, Inc.
doi: 10.1111/famp.12056
shown, for example, that worry about the future, tension, and nervousness were the most
common feelings of burden expressed by caregivers (Benson et al., 1996; Reinhard, 1994;
Wiedemann, Rayki, Feinstein, & Hahlweg, 2002). Also frequently reported were feelings
of strain, stress symptoms (Beavers & Hampson, 2000; Lefley, 1997), feeling stigmatized,
and having a compromised quality of life (Link & Phelan, 2006; Mendenhall & Mount,
2011).
At the same time, however, caregivers were found to play a key role in influencing their
family members prognosis, and reducing rates of psychiatric admission, relapse, and epi-
sodes of self-harm (Schofield, Murphy, Herrman, Bloch, & Singh, 1997). Furthermore,
family caregivers have reported deriving benefits from their caregiving role. For instance,
personal gain has been described as a positive consequence of caregiving, characterized by
recognizing ones inner strength, building self-confidence, learning new things, and per-
sonal growth (Deeken, Taylor, Mangan, Yabroff, & Ingham, 2003). Recurring themes of
love, caring, and compassion for the relative with mental illness also appeared consis-
tently throughout research interviews (Kietzman, 2002). Nevertheless, it has been noted
that positive-related aspects of caregiving have received inadequate research attention
(Kietzman, 2002; Mendenhall & Mount, 2011).
Since it has become increasingly clear that SMI often impacts not only the consumer
but the family members as well (DeChillo, Koren, & Schultze, 1994; East, 1992; Smith
& Birchwood, 1990), efforts have been geared toward developing and implementing
interventions to help families cope with the challenges posed by their family members
illness (McFarlane, Dixon, Lukens, & Lucksted, 2003; Melamed & Gelkopf, 2013;
Solomon & Chung, 2012). In addition to the positive impact of such interventions on
family members, cumulative evidence shows that family interventions also have a posi-
tive impact on consumer outcome (Jewell, Downing, & McFarlane, 2009; McFarlane
et al., 2003; Mueser & Glynn, 1999; Nasr & Kausar, 2009). On aggregate, as families
are increasingly viewed as recipients of mental health services, it is important that out-
come projects consider not only the outcomes of consumers but also those of their family
members.
The purpose of the present paper is to fill a gap by providing accurate and reasonably
detailed information about a selection of caregiver assessment measures that are practice-
oriented, practical, and applicable, and address the current status of self-administered
caregiver measures among caregivers of offspring with SMI. Specifically, our aims are (1)
to review existing studies, describe the leading caregiver instruments, and identify spe-
cific dimensions of outcomes and (2) to provide necessary information (namely, reliability
and validity) about a collection of self-administered caregiver questionnaires, which can
allow both clinician and researcher to select the most appropriate measurement for their
purposes.
METHOD
Search Strategy
The aim of the comprehensive search strategy was to find studies conducted between
1980 and 2012 that were published in English. A 3-step search strategy was utilized in
each component of the review. An initial search of MEDLINE via PubMed, Web of Science,
and PsycINFO was performed followed by analysis of the words contained in the title and
abstract and the index terms used to describe the article. A second search used all identi-
fied keywords and index terms across all other included databases. Third, the reference
list of identified reports and articles was searched for additional studies. The keywords,
additional databases, and an example of a search are included in Table 1.
Fam. Proc., Vol. 53, March, 2014
GELKOPF & ROE
/
151
Inclusion and Exclusion Criteria
The review considered descriptive, cross-sectional, experimental, quasi-experimental,
and nonexperimental studies undertaken in both in-patient and out-patient settings.
Potential studies were included if they considered a primary family caregiver of those with
SMI. Instruments included in the review were self-report questionnaires. This did not
include open-ended questionnaires or survey interviews.
Instruments were included only if the original research investigating the instrument
had been published in a peer-reviewed journal. If an instrument was based on a previous
instrument, but had been altered substantially and not retested for validity and reliabil-
ity, it was excluded. Also excluded were questionnaires that were compilations of other
instruments and had not been further refined or tested (Deeken et al., 2003).
We included the selection criterion that instruments needed to address caregivers
and be applicable to individual caregivers who were family members. We included only
TABLE 1
Search Strategy
The databases searched included
BioMed Central
Elseviers Science Direct
EMBASE
FirstSearch Dissertation Abstracts
Geneva Foundation for Medication Education and Research
GoogleScholar.com
Institute for Health & Social Care Research (IHSCR)
ISI Web of Knowledge
MEDLINE via PubMed
National Library for Health (NLH)
ProQuest Dissertation and Theses
PsycINFO
Centre for Reviews and Dissemination (CRD)
Web of Science
Wiley InterScience
World Health Organization and Information Networks for Knowledge Database Library (WHOLIS)
Initial keywords used included
Caregiver burden, caregiver support, caregiver experience, caregiver stress (family) caregiving; mental
illness, serious mental illness, schizophrenia, psychosis; self-report assessment tools, screening tools,
instrument; Caregiver Assessment Scale (CAS), Caregiver Quality of Life Index, Experience of
Caregiving Inventory, Family Burden Inventory Scale, Perceived Burden Scale (PBS), Perceived
Caregiver Burden (PCB), Perceived Family Burden Scale (PFBS), Subjective and Objective Family
Burden Interview, Subjective Burden Scale (SCB), and Zarit Caregiver Burden Interview (ZBI)
An example of a PubMed Search
Caregiver burden
Caregiver support
Family caregiv (*) experience
Self-report assessment tools
SMI
Psychosis
Keywords: caregiver assessment scale OR caregiver quality of life index OR experience of caregiving
inventory OR family burden inventory scale OR perceived burden scale OR perceived caregiver
burden OR perceived family burden scale OR subjective and objective family burden interview OR
subjective burden scale OR Zarit caregiver burden interview
Combine 1 or 2 or 3
Combine 4 or 5 or 6 or 7
Combine 8 and 9
Combine 1 and 8 and 9
www.FamilyProcess.org
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/
FAMILY PROCESS
instruments that had 75 or fewer items and could be answered within 2530 minutes and
were, therefore, not too burdensome for administration. Instruments that assessed family
needs focusing on family members who were not necessarily involved with the care recipi-
ent were excluded. Since we were interested in the commonalities of the caregiver experi-
ence, as well as in identifying instruments that could be used by researchers and health
care professionals with diverse patient populations, we did not exclude measures that
were diagnostic-specific (e.g., focusing on caregivers of those with schizophrenia). Finally,
instruments were excluded if insufficient information for evaluation was provided in the
original article.
The database and additional searches identified 750 articles. After reviewing abstracts
only, a total of 347 articles were intensively studied. We retrieved these articles via the fol-
lowing databases: MEDLINE via Pubmed (67), Web of Science (84), PsycINFO (136), and
from other databases (60; see Figure 1). In accordance with the inclusion criteria, titles
and abstracts of citations obtained from the search were examined and irrelevant articles
discarded. The full text of those studies considered relevant were obtained and assessed.
Of the 347 articles, 43 instruments were included in the review (see Figure 1).
Instrument Evaluation
Data about the type of instruments, the country or countries in which they were
used, and their psychometric properties were retrieved from the article. Data on the
Instruments were identified
through: titles, abstracts, and
key words
n=750
Articles which were
Intensively reviewed
n=347
Instruments identified as
Self-Report Measures
were included and retrieved:
n=54
Final Instruments with
number of items < 75 were
included and their properties
described
n=43
Instruments with > 75 items
were not included
n=12
Instruments identified as
Structured or Semi-Structured
Interviews were not included:
n=293
FIGURE 1. Flow Chart of Search and Retrieval Process and Results
Fam. Proc., Vol. 53, March, 2014
GELKOPF & ROE
/
153
internal and external validity (using construct, content, or discriminant), and reliabil-
ity (using Cronbachs alpha total and/or subscale measures) were retrieved when avail-
able (Shadish, Cook, & Campbell, 2002), as was validity data, and language
translation.
Format (including the number of questions), subscales, and parameters of the instru-
ments were determined using the original published articles. Finally, based on available
data, sample items and an evaluation of the general strengths and weaknesses of each
instrument are provided (see also the comments sections of Tables 24). Tools were com-
piled in chronological order and alphabetically by the name of the tool.
Description of Studies
The final search strategy identified 347 references. Further appraisal resulted in the
full-text retrieval of 54 studies, which contained the appropriate psychometric property
and feasibility data. However, 11 of these instruments did not meet inclusion criteria
(more than 75 items) and were thus omitted from further review. Tables 24 describe the
caregiver screening tools, their reported psychometric properties, and the reported feasi-
bility data within the included articles. Several articles provided reports of multiple tools,
but not all of them reported full psychometric data.
Of the articles included, 11 reported screening tools that had 12 or fewer questions, five
had 15 or fewer questions, 20 had 30 or fewer questions, four had 50 or fewer questions,
and two had 75 or fewer questions. The majority of tools (41 of the 43 selected measures)
included a Likert scale.
RESULTS
Tables 24 include 43 caregiver burden self-report questionnaires, their design,
development, testing, and comments on each instruments strengths and weaknesses.
These instruments have evolved in complexity over the last three decades and have
been subject to rigorous psychometric testing. Early instruments were rarely tested for
more than face validity and internal consistency, whereas later instruments were
mostly subjected to tests for reliability and validity (construct, discriminant, and
content).
1. Burden and Other Negative Aspects of Caregiving (see Table 2)
Ten of the included burden instruments focus mainly on objective burden such as
missed workdays, disruption in social and leisure time, stressful aspects of caring, or
health troubles (Burden Interview [BI, Instrument 1]; Zarit Burden Interview [ZBI
short version, Instrument 2]; Zarit Burden Interview [ZBI Screening Version, Instru-
ment 3]; Family Burden Scale [FBS, Instrument 4]; Caregiver Load Scale [CLS, Instru-
ment 5]; Perceived Caregiver Burden Scale [PCB, Instrument 6]; Caregiver Reaction
Assessment [CRA, Instrument 7]; Child and Adolescent Burden Assessment [CABA,
Instrument 8]; Objective Burden Questionnaire [OBQ, Instrument 9]; Family Problems
Questionnaire [FPQ, Instrument 10]). One scale focused on subjective burden only
(Caregiver Appraisal Scale [CAS, instrument 11]), and eight (Instruments 1219) on
both objective and subjective burden (Perceived Burden Scale [PBS, Instrument 12];
Caregiver Burden Inventory [CBI, Instrument 13]; Objective and Subjective Burden
Scale [OBS, Instrument 14]; Cost of Care Index [CCI, Instrument 15]; Caregiver Bur-
den Inventory [CBI, Instrument 16]; Screen for Caregiver Burden [SCB, Instrument
17]; Burden Assessment Scale [BAS, Instrument 18], and the Perceived Family Burden
Scale [PFBS, Instrument 19]).
www.FamilyProcess.org
154
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FAMILY PROCESS
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Fam. Proc., Vol. 53, March, 2014
GELKOPF & ROE
/
155
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GELKOPF & ROE
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www.FamilyProcess.org
158
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FAMILY PROCESS
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(
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Fam. Proc., Vol. 53, March, 2014
GELKOPF & ROE
/
159
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GELKOPF & ROE
/
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164
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FAMILY PROCESS
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Fam. Proc., Vol. 53, March, 2014
GELKOPF & ROE
/
165
Supplementing the above measures, 11 instruments assess other negative conse-
quences of caregiving, of which four tools focus on aspects relating to strain (Caregiver
Strain Index [CSI, Instrument 10]; Family Relationship Strain [FRS, Instrument 21];
Caregiver Burden Scale [CBS-E, Instrument 22]; Caregiver Strain Questionnaire [CGSQ,
Instrument 23]); and two focus on feelings of stress (Perceived Stress Scale [PSS, Instru-
ment 24] and Caregiver Outcome Scale [COS, Instrument 25]). Three measures focus on
domains relating to harm, loss, or threat (Appraisal of Caregiving Scale [ACS, Instrument
26]; Finding Meaning Through Caregiving Scale [Instrument 27], and Experience of
Caregiving Inventory [ECI, Instrument 28] respectively). One scale assesses constructs
that determine outcomes such as harm, threat, and challenge (Involvement Evaluation
Questionnaire [IEQ, instrument 29]) and one scale assesses a sense of entrapment in addi-
tion to the objective burden described above (Perceived Caregiver Burden Scale [PCB,
Instrument 6]).
Considering the scope of the scale, and the presence of different subscales and of
validity and reliability data, we suggest the following scales to be considered foremost
within this category. The CRA (Instrument 7; Given et al., 1992), with five subscales,
contains mainly burden but also positive aspects of caretaking; the Screen for Care-
giver Burden (Vitaliano, Russo, Carr, Maiuro, & Becker, 1985) and the BAS (Instru-
ment 18; Reinhard, 1994) have both an objective and subjective subscale and good
psychometric validation data. The CBS-E (Instrument 22; Elmstahl, Malmberg, &
Annerstedt, 1996) has five subscales mainly with a subjective orientation with excel-
lent validation data. The PSS (Instrument 24; Cohen, Kamarck, & Mermelstein, 1983)
has no subscales but is very short and therefore versatile, can be used in a wide vari-
ety of settings, and has validation data for both the general population and for those
with SMI. The following three scales have good psychometrics and a wide array of
subscales: the Finding Meaning Through Caregiving Scale (Instrument 27; Farran,
Miller, Kaufman, Donner, & Fogg, 1991) has three subscales, is very much meaning-
finding driven and includes spiritual items not observed on other scales; the ECI
(Instrument 28; Szmukler et al., 1996) has 10 subscales, and uses a stress/coping
paradigm rejecting the notion of burden; and the IEQ (Instrument 29; Schene & van
Wijngaarden, 1992) has four subscales, which include both objective and subjective
items assessing specifically the relationship between the recipient and caregiver.
Although this last tool has fewer subscales than the ECI, it is much shorter (36 items
vs. 66), is simple to administer, and is therefore a tool of choice for mental health
settings.
2. Positive Aspects of Caregiving
In addition to the negative demands of caregiving, positive aspects of the caregiving
experience have also been addressed (Table 2). Two measures focus largely on positive
aspects of the caregiving experience depicting constructs relating to personal growth
(Instrument 30, Challenge) and strength (Instrument 31, Caregiver Well-Being Scale). In
addition to objective burden, the Family Problems Questionnaire (FPQ, Instrument 10)
captures two subscales of positive support. One measure, in addition to assessing loss and
powerlessness, captures the construct of finding provisional and ultimate meaning in the
caregiving role (Instrument 27, Finding Meaning Through Caregiving Scale). Three mea-
sures describe rewards and satisfaction found in caring (Instrument 32, Uplifts; Instru-
ment 33, Role Stress and Rewards Questionnaire; and Instrument 34, Satisfaction With
Ones Own Performance as a Caregiver).
In this domain, the only tool that seems to have sound psychometrics is the Caregiver
Well-Being Scale (Instrument 31; Tebb, 1995). With three subscales, it has the added
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FAMILY PROCESS
advantage of being theoretically based on Maslows hierarchy of needs. Its only relative
disadvantage is its length45 items.
3. Perceptions and Attitudes of Caregiving
As shown in Table 3, a third cluster of measures focuses on caregivers perceptions
and attitudes toward their offspring, of which two instruments capture levels of
insight and treatment compliance (Schedule for Assessment of Insight-Expanded Ver-
sion [SAI-E, Instrument 35]; Family Coping Questionnaire [FCQ, Instrument 36]),
three measures focus on stigma and stereotypes (Internalized Stigma Scale [ISS,
Instrument 37]; Affiliate Stigma Scale [ASS, Instrument 38]; Attitudes Toward Schizo-
phrenia Questionnaire for Relatives [ASQR, Instrument 39]), and one measure focuses
on emotions (The Family Questionnaire [FQ, Instrument 40]). Furthermore, two
instruments assess domains relating to efficacy (Mastery, Instrument 41), Care Work
Satisfaction Scale (Instrument 42), and one commitment (Family Hardiness Index
[FHI, Instrument 43]).
Four measures assessed in this category seem to have adequate psychometrics, namely
the Family Coping Questionnaire (Instrument 36; Magliano et al., 1999), the ISS (Instru-
ment 37; Ritsher, Otilingam, & Grajales, 2003), The FQ (Wiedemann et al., 2002), and the
Attitudes Toward Schizophrenia Questionnaire for relatives (ASQR, Instrument 39;
Caqueo-Urzar et al., 2011). The ASQR has done excellent work in shortening (to nine
items) some of the previously cited questionnaires capturing behavioral, cognitive, and
affective components. Each of the three former scales captures different concepts, and
they are thus difficult to compare.
DISCUSSION
The present review identified and described a collection of instruments that were devel-
oped or tested among a homogeneous population of caregivers of persons with SMI in the
context of mental health outcomes. Although previous reviews have studied caregiver
assessment tools (e.g., Deeken et al., 2003; Harvey et al., 2008; Rungreangkulkij & Gilliss,
2000), no report to date has compiled a selection of self-report instruments (e.g., Harvey
et al., 2008; Kietzman, 2002), which were easy to administer, had robust psychometric
properties (Deeken et al., 2003; Harvey et al., 2008), and had been tested on caregivers of
offspring with SMI (Deeken et al., 2003; Kietzman, 2002; Rungreangkulkij & Gilliss,
2000).
Although this review was not meant to be an exhaustive description of the caregiver
literature, the intention was to compile self-administered instruments that were most
widely used among caregivers of those with SMI, that are concise (less than 75 questions),
and have established psychometric properties (with the exception of the early burden
measures between 1980 and 1985, which were limited in psychometric testing; Deeken
et al., 2003).
Burden and Other Negative Aspects of Caregiving as an Outcome Domain
The primary finding that emerged from this review is that the caregivers experience is
a complex and multidimensional phenomenon encompassing areas such as the physical,
psychological, emotional, social, and financial problems that caregivers might face (Chak-
rabarti, Kulhara, & Verma, 1993; Loukissa, 1995; Martyns-Yellowe, 1992; Veltro, Magli-
ano, Lobrace, Morosini, & Maj, 1994). It is, therefore, not surprising that most of the
instruments developed over the past three decades focus on domains of outcome relating
to burden (e.g., Deeken et al., 2003; Kietzman, 2002; Rungreangkulkij & Gilliss, 2000).
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At the same time, as illustrated in Tables 24, the term burden has been inconsis-
tently defined and psychometric properties were often lacking or insufficient (e.g., no
reports on alphas for each subscale or lack of testing for validity) across the measures.
This finding is supported by previous literature in which it is argued that reliability and
validity flaws within the measurement of burden are the byproduct of the lack of a system-
atic definition for burden and its derivatives (Szmukler et al., 1996).
This challenge in defining burden may also be explained by the fact that caregivers
might experience burden regardless of the presence or absence of a family member with
SMI (Gubman & Tessler, 1987; Tessler, Killian, & Gubman, 1987). It is conceivable, for
example, that stressful situations in daily life might induce burden among caregivers of
populations without mental illness. Therefore, attributing caregiver burden to the mental
illness of a family member remains unsubstantiated and warrants further research.
Within the context of burden, the primary constructs that emerged were the division of
burden into objective and subjective domains (Montgomery, Gonyea, & Hooyman, 1985;
Stein & Test, 1980). Objective burden is considered to be the extent of concrete disruptions
in various aspects of the caregivers life and household (e.g., loss of finances, time, or social
constraints). This is in contrast with subjective burden, which reflects the caregivers
stress related to their respective situations and the extent to which they feel manipulated
by the demands of the care recipient (Schofield et al., 1997; Suro & Weisman de Mamani,
2013).
Whereas some researchers adopted this dichotomy of objective and subjective con-
structs (e.g., Jones, 1996; Montgomery et al., 1985), others argued that the dichotomous
conceptualization of burden reduces its dimensions (Deeken et al., 2003; Harvey et al.,
2008).
Furthermore, our findings show that many different tools have been developed to exam-
ine caregiver burden. The names given to caregiver burden scales include not only the
term burden, but may use other constructs such as caregiver outcomes (Oldridge &
Hughes, 1992; Reinhard, 1994), caregiver strain (Taylor-Richardson, Heflinger, & Brown,
2006), caregiver experiences (Szmukler et al., 1996), caregiver appraisal (Doornbos,
1996), caregiver impact (Zeiss, Gallagher-Thompson, Lovett, Rose, & McKibbin, 1999),
and caregiver quality of life (Malone, 1993; McCubbin & McCubbin, 1993). Thus, it is
important for researchers and clinicians to review the actual items that are used to
measure these various outcome domains, because many of these instruments do in fact
measure the hardships experienced physically, psychologically, emotionally, socially, and
financially by caregivers.
Positive Aspects of Caregiving as an Outcome Domain
As illustrated, several instruments have also been developed to evaluate the other side
of caregiving, namely, the satisfaction gained from being a caregiver (Bulger, Wanders-
man, & Goldman, 1993; Doornbos, 1996; Kietzman, 2002). These instruments provide sub-
scales that determine positive dimensions of outcome such as personal growth or finding
meaning in the caregiving role (Deeken et al., 2003; Jones, 1996; Schene, 1990; Schene,
Tessler, & Gamache, 1996a,b). Concomitantly, these outcome domains have received far
less attention, which might be a consequence of the distress and burden inherent in care-
givers daily tasks and responsibilities (Szmukler et al., 1996). Nevertheless, focusing on
positive dimensions of outcome can empower caregivers and provide positive reinforce-
ment, affirmation, and encouragement, for both caregiver and care recipient (Deeken
et al., 2003). Moreover, the vast quantity of caregiver burden instruments as compared
with those assessing positive aspects of the caregiving experience suggest that these
newer conceptions of the caregiving experience (e.g., strengths and supports) when
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supplemented with existing caregiver burden instruments, have the potential to present a
more comprehensive picture of relevant domains of outcome.
Perceptions and Attitudes of Caregiving as an Outcome Domain
The last outcome domain identified illustrates that several instruments concentrated
on very specific concepts of caregiver burden (e.g., insight [Jan Shah, Wadoo, & Latoo,
2010]; treatment compliance [Taylor-Richardson et al., 2006; Winefield & Harvey, 1993];
stigma, stereotypes, and attitudes [Szmukler et al., 1996], and efficacy and mastery
[Magliano et al., 1999]). This third group of instruments corresponds to later conceptions
of burden, arguing that the competing commitments facing caregivers often lead to
unique responses and coping styles (Lawton, Kleban, Moss, Rovine, & Glicksman, 1989;
Reinhard, 1994). In other words, although many caregivers might need to perform similar
tasks and even experience the same emotional stressors, they differ in their perceptions,
attitudes, and levels of functioning, and outcomes might therefore vary widely from person
to person.
Finally, we found overlapping content between the instruments developed to evaluate
burden, positive aspects of caregiving, and the caregivers perceptions and attitudes. Thus,
it remains unclear whether the instruments presented in this review determine funda-
mentally different dimensions of the caregiver experience (Gallagher & Mechanic, 1996;
Lefley, 1996; Lemoine, Lavoie, Poulin, Poirier, & Fournier, 2005).
Study Limitations
Although self-report questionnaires might not be as sensitive as the interview structure
(McDowell, 2006), we attempted to define the instruments that clinicians and researchers
could use to assess caregivers that did not require too much time, burden for caregivers, or
significant staffing requirements. The findings generated from this review should be inter-
preted with caution for the following four reasons. First, although the instruments are
applicable to caregivers of people with SMI, it is conceivable that caregiving for people
with different mental disorders might impact caregivers in unique ways and thus might
impede the assessment of these caregivers as a homogenous group. Second, not all of the
measures included in this review have reported full psychometric properties, and hence
no specific measure is recommended. Third, studying caregiving outcome domains as sep-
arate constructs can potentially be biased due to the intertwined nature of these dimen-
sions. Fourth, the scope of this review was limited to self-administered measures, which
might have led to the exclusion of other relevant tools (e.g., semistructured interview).
Nevertheless, a previous review (McDowell, 2006) indicated the usefulness of self-admin-
istered measures due to their feasibility and easy administration.
Implications for Practice
This systematic review presented 43 instruments that measure aspects of the caregiver
experience and illuminate various dimensions of outcome. Thanks to the availability of
such a wide selection of caregiver burden tools, the clinician has the option of choosing
which tool to use based on the specific outcome domain of interest. Due to the multidimen-
sional nature of caregiver burden, and the lack of standardization among the range of
caregiver burden tools (Deeken et al., 2003), the clinician and/or researcher need to
examine the subscales and items in each tool carefully to determine if they measure the
dimension of interest.
Included in this review were relatively short instruments that might be useful in the
clinical setting, but several of them require further psychometric testing before they can
be used for intervention work, particularly the older burden scales. In addition, the
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purpose of this systematic review was not to provide the clinician with the best self-
administered caregiver measure. Our purpose was to propose a guide by selecting outcome
domains most appropriate for their practice. It goes without saying that the family experi-
ence itself is a complex dynamic of continual interactions. Therefore, therapeutic work
with families coping with a family member with SMI can profit greatly from the under-
standing of the range of domains that can potentially be used to assess and orient therapy,
for the benefit of the caretaker, the individual with SMI, and for the interaction between
them (Ungar, Liebenberg, Landry, & Ikeda, 2012).
Implications for Research
The significant amount of research on psychometric testing of caregiver screening tools
has provided a solid foundation for additional research. Although some tools have been
well tested, many have published limited psychometric properties and feasibility data
which warrant further research. Researchers should study caregiver screening measures
based on the specific constructs that they are interested in addressing.
On aggregate, in light of the findings of this systematic review, and the changes in the
mental health care system, caregivers of those with SMI deserve further attention. Exist-
ing research has focused mainly on the negative aspects of caregiving, whereas other
dimensions relating to positive outcome domains have received far less attention. In addi-
tion, assessing caregivers perceptions and attitudes can shed light on their subjective
experiences and unique coping styles relative to their peers. Consequently, researchers
and clinicians alike should be aware of and sensitive to both the positive and the negative
aspects of their clients caregivers. Refinement of existing self-report measures and
further psychometric testing should proceed to capture the full range of issues facing
caregivers of offspring with SMI.
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