Measures of Psychological Stress and Physical Health in Family Caregivers of Stroke Survivors A Literature Review

128 Journal of Neuroscience Nursing
Measures of Psychological Stress and Physical

Health in Family Caregivers of Stroke
Survivors: A Literature Review
Karen L. Saban, Paula R. Sherwood, Holli A. DeVon, Denise M. Hynes
ABSTRACT
Studies have demonstrated that the stress of family caregiving places caregivers at risk for developing
depression, poor quality of life, and health problems. The purpose of this review was to identify the ways in
which variables are operationalized in studies addressing psychological stressors and physical health of
family caregivers of stroke survivors. The adapted Pittsburgh MindYBody Center model provides the
organizing conceptual framework for this literature review. A literature search for relevant articles was
conducted using Ovid Medline, PsycINFO, and Ovid Nursing Database for the period of July 1999 through
June 2009 using the following search terms: caregiver (or family caregiver), stroke, stress, and health.
Articles were included if they met the following inclusionary criteria: (a) written in English, (b) published
in peer-reviewed journal, (c) focused on adults who were caring for an adult who experienced stroke,
(d) included measures of stress and physical health or health-related quality of life, and (e) primarily used
quantitative research methods. Twenty-four articles were identified that met the inclusion criteria. Findings
related to the variables included in the adapted Pittsburgh MindYBody Center model are discussed.
Variables were not well defined, a wide array of measurement instruments were used, and measures were
taken at broadly divergent time frames following stroke. Future research guided by a theoretical
framework, consistent measures of variables, and standardized measurement time points would allow for
better comparison of findings across studies, thus enabling clinicians to better understand the health risks
of family caregivers.
Background 5.5 million stroke survivors in the United States

Stroke is the third leading cause of death in United (National Family Caregiver Association, 2007;
States following heart disease and cancer, although Rosamond et al., 2007). From this group, over one
the survival rate for acute stroke has improved over million experience significant long-term physical
recent years due to advancements in stroke treat- disabilities, resulting in survivors relying on family
ment. It is estimated that about 80% of stroke sur- members to help them manage physical and cogni-
vivors are discharged home and live for at least tive dysfunction.
5 years after experiencing a stroke, resulting in Stroke patients often experience significant func-
tional limitations, cognitive impairments, urinary in-
Question or comments about this article may be directed to Karen L. continence, and speech difficulties following stroke.
Saban, PhD RN APRN CNRN, at ksaban@luc.edu. She is an These impairments may last indefinitely, requiring
assistant professor at the Loyola University Chicago, Marcella
Niehoff School of Nursing, Chicago, IL, and a postdoctoral fellow
lifelong caregiver assistance. Even with paid formal
at the Edward Hines Veterans Administration Hospital, Hines, IL. assistance (i.e., home health aide), families are fre-
Paula R. Sherwood, PhD RN CNRN, is an assistant professor at
quently faced with a multitude of stressors ranging
the School of Nursing, University of Pittsburgh, Pittsburg, PA. from coordination of medical care to 24-hour care of
Holli A. DeVon, PhD RN, is an associate professor at the
their loved ones. Even more profound may be the
Loyola University Chicago, Marcella Niehoff School of Nursing, grief associated with the changed relationship with
Maywood, IL. the patient. This loss may be especially evident in
Denise M. Hynes, MPH PhD RN, is a director and a research spouses of stroke survivors. Studies have consis-
career scientist at the VA Information Resource Center and the tently demonstrated that family caregivers are at risk
Center for Management of Complex Chronic Care based at the for developing depression, anxiety, sleep distur-
Edward Hines Jr. VA Hospital and is a professor at the University
of Illinois at Chicago, College of Medicine and School of Public
bances, poor quality of life, and health problems
Health, Chicago, IL. (Berg, Palomaki, Lonnqvist, Lehtihalmes, & Kaste,
Supplemental digital content is available for this article. Direct
2005; Schlote, Richter, Frank, & Wallesch, 2006;
URL citations appear in the printed text and are provided in the Ski & O’Connell, 2007; van Exel, Koopmanschap,
HTML and PDF versions of this article on the journal’s Web site van den, Brouwer, & van den Bos, 2005). Lee,
(http://www.jnnonline.com). Colditz, Berkman, and Kawachi (2003), for exam-
Copyright B 2010 American Association of Neuroscience Nurses ple, reported an almost twofold increased risk of
Copyright @ 2010 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited.
Volume 42 & Number 3 & June 2010 129
physical health in caregivers of stroke survivors is im-

portant in assisting clinicians in identifying caregivers
Multiple research studies of stroke who are at high risk for developing health problems
survivors have demonstrated that and providing early interventions to minimize their risk.
Although several literature reviews (i.e., Carod-
their caregivers are at risk for Artal & Egido, 2009; Pringle, Hendry, & McLafferty,
developing physical and 2008; Vanhook, 2009) were identified that assessed
caregivers of stroke survivors, none were found that
psychological problems specifically addressed the interaction between psy-
chological stressors and physical health of family
that negatively impact their caregivers. The purpose of this review was to iden-
quality of life. tify the way in which variables are operationalized
in studies addressing psychological stressors and
physical health of family caregivers of stroke survi-
coronary heart disease in caregivers of ill spouses vors. In addition, this literature review identifies gaps
when compared with noncaregivers. The link be- in knowledge and suggests future areas of needed
tween stress, physiological changes, and physical research. The adapted Pittsburgh MindYBody Center
health has been well documented in the general (PMBC) model (Mathews, 2008; Sherwood et al.,
population. In terms of physiological changes, stud- 2008) provides the organizing conceptual framework
ies have found associations between perceived stress and guides the identification of pertinent variables
and cortisol secretion (Bremner, 2006), glucose reg- for this literature review.
ulation (Altuna, Lelli, San Martin de Viale, & Damasco,
2006; Attari, Sartippour, Amini, & Haghighi, 2006; Conceptual Framework
Wiesli, Krayenbuhl, Kerwer, Seifert, & Schmid, To describe the interactions between behavioral and
2007), inflammation (Hamer, Gibson, Vuononvirta, biologic responses to stressors, the PMBC model was
Williams, & Steptoe, 2006; Miller, Rohleder, Stetler, & developed (Mathews, 2008) and has been adapted to
Kirschbaum, 2005; Owen, Poulton, Hay, Mohamed- guide research focusing on the biologic and behav-
Ali, & Steptoe, 2003; von et al., 2006), and immune ioral response of caregivers of malignant brain tumor
function (Kavelaars & Heijnen, 2006; Mohr & Pelletier, patients (Sherwood et al., 2008). This model can be
2006; Simmons & Broderick, 2005; Vig, Forsythe, & easily adapted to describe the interaction between
Vliagoftis, 2006). Health outcomes related to stress psychological stressors, physiological changes, and
include increased risk of cardiovascular disease (Lee overall health outcome in family caregivers of stroke
et al., 2003) and somatic symptoms, such as heart pal- survivors (Figure 1). In this model, psychological stress
pitations, headaches, and digestive problems (Grasel, is defined as the Brelationship between the person
2002; Kreutzer et al., 2009; Thompson et al., 2004). and the environment that is appraised by the person
In caregivers, particularly in caregivers of persons as taxing or exceeding his or her resources and en-
with dementia, the stress of providing care has been dangering his or her well-being[ (Lazarus & Folkman,
linked to sleep dysfunction (Brummett et al., 2006), 1984, p. 21). Examples of potential variables for each
altered cytokine levels (von et al., 2006), and greater concept are provided based upon a review of the gen-
coagulation (Mills et al., 2009) when compared with eral caregiver literature. In this adapted model, stroke
noncaregivers. Unfortunately, none of these works survivor characteristics describe the person who ex-
has been replicated in caregivers of persons with a perienced the stroke. Type, location, and severity of
stroke. Caregiving for stroke patients differs from stroke and functional status of the stroke survivor are
that of dementia patients in that stroke caregivers are examples of potential variables representing this con-
impacted suddenly and without warning. Perceived cept. Care recipient characteristics can impact the
stress, use of coping mechanisms, and the psycho- caregiver’s psychobehavioral responses. Caregiver
logical and physiological response to stress may be characteristics represent the individuality of the care-
different when the stressor occurs abruptly rather giver. Caregiver attributes such as personality, social
than gradually. In addition to the health risks asso- support, sociodemographics, and health status con-
ciated with stress, caregivers of stroke survivors may tribute to this concept. Caregiver characteristics may
be particularly vulnerable to developing cardiovas- directly affect the psychobehavioral response of the
cular disease because they may have similar lifestyle caregiver to caregiving. For example, caregiver eth-
risk factors (e.g., poor diet, sedentary lifestyle, and nicity may play a role in how a person responds to
smoking habits) as the stroke patient. A better un- caring for a family member who has experienced
derstanding of the interaction between stress and stroke. Psychobehavioral responses of the caregiver,
FIGURE 1 Caregiver of Stroke Survivor Conceptual Model
Note. Adapted with permission from the Pittsburgh MindYBody Center model (http://pghmbc.org; Mathews, 2008; Sherwood et al, 2008).
which may include depressive symptoms, anxiety, sleep search were then conjoined using OR with the terms
problems, and changes in health-promoting behavior, biomarkers, cortisol, or cytokines. Articles were in-
impact the caregiver’s biologic response. Psychologi- cluded if they met the following inclusionary criteria:
cal responses differ from behavioral responses in that (a) written in English, (b) published in peer-reviewed
psychological responses are symptoms, such as feel- journal, (c) focused on adults who were providing care
ings of anxiety, whereas behavior responses are be- to an adult who experienced stroke, (d) included mea-
haviors, such as alterations in sleep or changes in sures of stress and physical health or health-related
health-promoting behaviors. Examples of potential quality of life, and (e) used primarily quantitative re-
biologic responses in this model include changes in search methods. Reference sections of identified arti-
the inflammatory response and immune function. These cles were also searched for additional relevant articles.
responses to stress can lead to changes in overall health
of the caregiver. In the model, overall health is de-
fined as the caregiver’s perceived physical functioning, Results of Search Strategy
ability to fulfill roles, pain, and perceived physical Twenty-four articles were identified that met the in-
health (Ware, Kosinski, Turner-Bowker, & Gandek, clusionary criteria (see the Appendix, Supplemental
2002). The concepts and their relationships within the Digital Content 1, http://links.lww.com/JNN/A2).
adapted PMBC model are used to guide the following Sample size of caregivers ranged from 31 to 257,
literature review focusing on the psychological stress with a mean of 103 (SD = 59) and a median of 93.
and physical health interaction in caregivers of stroke Of the 24 studies reviewed, 12 (50%) were descrip-
survivors. tive or cross-sectional, and 12 (50%) were prospec-
tive. Two of the descriptive studies compared
African American and White caregivers (Cuellar,
Method of Search Strategy 2002; Williams, 2000), and 1 study included a control
A literature search for relevant articles was conducted group of family members of persons with mild hy-
using Ovid Medline, PsycINFO, and Ovid Nursing pertension (Fatoye, Komolafe, Adewuya, & Fatoye,
Database for the period of July 1999 through June 2006). Five (21%) studies included interventions for
2009 using the following search terms: caregiver (or caregivers. Interventions consisted of psychoeduca-
family caregiver), stroke (including both hemorrhagic tional programs (Draper et al., 2007), educational
and ischemic), stress, and health. Results of this programs (Louie, Liu, & Man, 2006), support groups
(Schure et al., 2006; van den Heuvel et al., 2002), characteristics, caregiver psychobehavioral responses,
home visit programs (Schure et al., 2006; van den caregiver biologic responses, and caregiver overall
Heuvel et al., 2002), and problem-solving training health.
(Grant, Elliott, Weaver, Bartolucci, & Giger, 2002).
Most studies (58%) did not report using a theo- Stroke Survivor Characteristics
retical framework or conceptual model to guide the Characteristics of the stroke survivor including gen-
study. Of the nine studies that did report a theoretical der, age, severity of stroke, functional status, and
framework, the following were used: (a) the stress cognitive impairment that may impact or moderate
and coping theory of Lazarus and Folkman (Bakas & the caregiver’s response to the experience of care-
Burgener, 2002; Schure et al., 2006; van den Heuvel, giving were assessed in the literature review. Of the
de Witte, Schure, Sanderman, & Meyboom-de, studies reviewed, 21 (88%) included information
2001; van den Heuvel et al., 2002), (b) Moos and about the stroke survivor. Findings related to char-
Tsu Model of Coping With the Crisis of Physical acteristics measured in the stroke survivor are sum-
Illness (King & Semik, 2006), (c) Impact of marized in Table 1. Demographic information, such
Caregiving Model (Singh & Cameron, 2005), and as gender, age, and marital status, was the most com-
(d) Deimling’s Conceptual Framework for Compre- mon type of information collected from the care
hensive Assessment of Caregiver Functioning (Teel, recipient. Two studies (Bugge et al., 1999; Smith
Duncan, & Lai, 2001). One study reported using et al., 2004) included a measure of social status.
both the self-efficacy theory of Bandura and the Carstairs Deprivation Scores (McLoone, 2009) mea-
stress and coping theory of Lazarus and Folkman to sures household deprivation: overcrowding, male
describe differences in African American and White unemployment, social class, and car ownership. In
caregivers of stroke survivors in rural Mississippi one study, over half of the caregivers and recipients
(Cuellar, 2002). Another study combined caring the- were found to be living in highly deprived circum-
ory and social exchange theory to guide a study com- stances (Smith et al., 2004). Functional status of the
paring distress and hardiness in African American stroke survivor was measured in 11 (46%) of the 24
and White caregivers (Williams, 2000). Of these studies, with the Barthel Index (Mahoney & Barthel,
models, the adapted PMBC model (Mathews, 2008; 1965) being the most commonly used instrument.
Sherwood et al., 2008) is most similar to the stress Other stroke survivor characteristics included were
and coping theory of Lazarus and Folkman (Lazarus physical health (31%), mental health (26%), cogni-
& Folkman, 1984) in terms of demonstrating the tive status (21%), stroke severity (16%), and health
relationships among stressors and health. However, services utilization (5%). Unfortunately, many stud-
the models differ in that the PMBC model includes ies did not clearly identify whether the stroke sur-
the interaction between psychological, physiological, vivor or the caregiver provided the information
and health outcomes. about the stroke survivor characteristics.
The time frame for measurement varied widely
in the reviewed studies. Data were collected within Caregiver Characteristics
the first year after stroke in most (54%) of the stud- Characteristics of the caregiver encompass personal
ies (see the Appendix, Supplemental Digital Con- attributes such as personality type, social attributes,
tent 1, http://links.lww.com/JNN/A2). Longitudinal sociodemographics, and health status that may in-
studies most commonly collected data at the 1-, 3-, fluence the caregiver’s psychobehavioral response
and 6-month periods following the stroke or to the stressor of caregiving. Table 2 summarizes the
rehabilitation (Bugge, Alexander, & Hagen, 1999; instruments used to operationalize caregiver charac-
Teel et al., 2001). Only a few studies included par- teristics in the studies reviewed. Overall, caregiver
ticipants who were providing care for greater than characteristics encompassed a wide variety of vari-
3 years (Bakas & Burgener, 2002; Schure et al., ables, and there were numerous instruments used in
2006; van den Heuvel et al., 2001, 2002). However, the reviewed studies. Most studies measured demo-
these studies reported wide ranges of time frames graphic information such as age, gender, marital sta-
for caregiving. For example, Bakas and Burgener tus, race, and educational level of the caregiver. Two
(2002) included persons providing care between studies (Cuellar, 2002; Williams, 2000) compared
2 months and 23 years. the differences in White and African American care-
givers of stroke survivors. Three studies reported the
Findings number of hours or time spent caregiving (Bugge
Findings related to the following variables included et al., 1999; Smith et al., 2004; Teel et al., 2001).
in the adapted PMBC model (Mathews, 2008) will be Only 54% of the studies accounted for other char-
discussed: stroke survivor characteristics, caregiver acteristics of the caregivers such as socioeconomic
TABLE 1. Stroke Survivor Characteristics: Variables and Instruments Used in Reviewed

Studies
Variable
Measured Instrument Study
Social status Carstairs Deprivation Scores Bugge et al. (1999)
Physical health Sickness Impact Profile Schure et al. (2006); van den Heuvel et al. (2001); and Ilse,
Feys, de, Putman, and de (2008)
SF-36 Tooth, McKenna, Barnett, Prescott, and Murphy
(2005) and Bugge et al. (1999)
Physical exam Fatoye et al. (2006)
Medical and social history Fatoye et al. (2006), Tooth et al. (2005), and Bugge et al. (1999)
Mental health Hospital Anxiety and Ilse et al. (2008) and Jones, Charlesworth, and Hendra (2000)
Depression Scale
Beck Depression Inventory Fatoye et al. (2006)
Author-developed tool Schure et al. (2006) and van den Heuvel et al. (2001)
Cognitive status Mini-Mental Status Exam King and Semik (2006); Fatoye et al. (2006); Bugge et al.
(1999); Teel et al. (2001); and Louie et al. (2006)
Functional status Barthel Index Draper and Brocklehurst (2007); Sit, Wong, Clinton, Li, and
Fong (2004); Ilse et al. (2008); Smith et al. (2004); Jones et al.
(2000); Bugge et al. (1999); Franzen-Dahlin, Larson, Murray,
Wredling, and Billing (2007); and Draper et al. (2007)
Functional Independence King and Semik (2006) and Tooth et al. (2005)
Measure
Extended Activities of Daily Blake, Lincoln, and Clarke (2003); Ilse et al. (2008); and
Living Scale Blake and Lincoln (2000)
Activities of Daily Living Scale Cuellar (2002)
Rivermead Motor Assessment Ilse et al. (2008)
Modified Rankin Scale Ilse et al. (2008)
Frenchay Index Smith et al. (2004)
Hodkinson Test Smith et al. (2004)
Canadian Neurological Scale Bugge et al. (1999)
Stroke severity National Institutes of Health Ilse et al. (2008)
Stroke Scale
Glascow Coma Scale Bugge et al. (1999)
Orpington Scale Teel et al. (2001)
Health service Number of health service Smith et al. (2004)
resources resources
status, confidence, social support and status, and self- about the level of different types of support received,
esteem. The most commonly measured characteristic number and persons providing support, and the in-
of the caregiver was social support. However, there dividual’s subjective appraisal of the quality of sup-
was no consistency in the choice of instruments used port were assessed. The authors found that tangible
to operationalize social support. Only a few studies and social companionship were the most important
delineated between appraised quality of social factors related to the caregiver’s psychosocial health.
support and frequency and amount of social support.
For example, Sit et al. (2004), in a study of family Caregiver Psychobehavioral Responses
caregivers of stroke survivors during the first 12 Psychological Responses
weeks following stroke, incorporated measures of so- Caregiver psychological responses were most fre-
cial support that included emotional support, tangible quently characterized as stress (including caregiver
support, informational support, and social compan- burden and strain; 58% of studies), mood (30% of
ionship. For each of these components, information studies), depressive symptoms (16% of studies), and
TABLE 2. Caregiver Characteristics: Variables and Instruments Used in Reviewed Studies

Variable Measured Instrument Study
Socioeconomic status Occupational Prestige Scale Schure et al. (2006) and van den
Heuvel et al. (2001)
Hollingstead 4-Factor Index King and Semik (2006)
Confidence Confidence in Knowledge (author-developed tool) van den Heuvel et al. (2001)
Knowledge About Stroke (author-developed tool) Franzen-Dahlin et al. (2007)
Social support Interview Schedule for Social Interaction Franzen-Dahlin et al. (2007)
Significant Other Scale Blake and Lincoln (2000)
Author-developed tool Tooth et al. (2005)
Saranson Social Support Index Singh and Cameron (2005)
Social Support Questionnaire-Transaction Sit et al. (2004)
Arizona Social Support Interview Schedule Sit et al. (2004)
Social Support List-Interaction and Discrepancy van den Heuvel et al. (2002)
Social Support Questionnaire Cuellar (2002)
Social status Carstairs Deprivation Scores Smith et al. (2004)
Premorbid relationship Intimate Bonds Measure Draper and Brocklehurst (2007)
with stroke survivor
Self-esteem Caregiver Self-Esteem Bakas and Burgener (2002)
Rosenberg Self-Esteem Scale Blake and Lincoln (2000)
Sense of coherence Antonovsky Questionnaire Franzen-Dahlin et al. (2007)
Spirituality Spiritual Perspective Scale Teel et al. (2001)
Mastery Pearlin’s Caregiver Mastery Measure Singh and Cameron (2005)
Stroke knowledge Author-developed tool Louie et al. (2006)
Caregiver preparedness Preparedness for Caregiving Scale Grant et al. (2002)
Self-efficacy Caregiver Self-Efficacy Scale Singh and Cameron (2005)
Assertiveness Tool developed by authors van den Heuvel et al. (2002)
Locus of control Multidimensional Health Locus of Control Scale Blake and Lincoln (2000)
Hardiness Family Hardiness Scale Williams (2000)
Optimism Life Orientation Scale Blake and Lincoln (2000)
Functional status London Handicaps Scale Blake and Lincoln (2000)
Stroke survivor’s perception Cognitive Status Scale Bakas and Burgener (2002)
of patient’s cognitive status
coping (13% of studies). Less frequently measured psy- Cameron (2005), in their study of 48 caregivers of
chological variables were fatigue, caregiver adjustment, stroke survivors, measured behavior using two dif-
sorrow, and satisfaction with caregiving. Caregiver ferent tools: Bother Scale (modified Behavior Scale;
stress was most commonly measured using the Care- Williams, 1994) and the Caregiving Impact Scale
giver Strain Index (Robinson, 1983) included in five (Cameron et al., 2002). Hartke et al. (2006), in a
(22%) of the studies reviewed. Three studies (13%) study of 124 White female caregivers of stroke sur-
operationalized caregiver stress using the Caregiver vivors, developed a questionnaire to measure both
Assistance Scale (Cameron, Franche, Cheung, & health and health habits of caregivers. This tool in-
Stewart, 2002). There was no consistency among the cluded ratings of caregiver nutrition, exercise, and fre-
tools in measuring any of the other caregiver psy- quency and causes of accidents. None of the studies
chological responses in the studies reviewed. reviewed considered sleep or energy expenditure
(Table 3).
Behavioral Responses
Caregiver behavioral responses were less commonly Caregiver Biologic Responses
measured in the reviewed studies. Only two (8%) Biologic responses encompass measures of physio-
studies measured caregiver responses. Singh and logical responses or physical characteristics such as
TABLE 3. Caregiver Psychobehavioral Responses: Variables and Instruments Used in

Reviewed Studies
Variable Measured Instrument Study
Psychological
Caregiver stress Caregiver Strain Index Draper and Brocklehurst (2007); Blake, Lincoln,
including burden and Clarke (2003); van den Heuvel et al. (2001);
and strain Ilse, Feys, de, Putman, and de (2008); and
Blake and Lincoln (2000)
Caregiver Assistance Scale Singh and Cameron (2005); Tooth, McKenna,
Barnett, Prescott, and Murphy (2005); and
Bugge et al. (1999)
Caregiver Burden Inventory Tooth et al. (2005) and Hartke, King, Heinemann,
and Semik (2006)
Relatives Stress Scale Jones, Charlesworth, and Hendra (2000)
Caregiving Burden Scale Bakas and Burgener (2002) and Grant et al. (2002)
Appraisal of Caregiving Scale Bakas and Burgener (2002)
Perceived Stress Scale Teel et al. (2001) and Blake and Lincoln (2000)
Caregiver Reaction Assessment Teel et al. (2001)
Mood, affect, Profile of Mood States Singh and Cameron (2005) and Bakas and
and mental status Burgener (2002)
Positive and Negative Affectivity Blake et al. (2003)
Schedule
General Health Questionnaire Blake et al. (2003) and Blake and Lincoln (2000)
Hospital Anxiety and Depression Scale Fatoye et al. (2006) and Smith et al. (2004)
Self-Rating Scale for Affective Franzen-Dahlin et al. (2007)
Syndromes
Courtald Emotional Control Scale Blake and Lincoln (2000)
Depression Center for Epidemiologic Studies Cuellar (2002), Hartke et al. (2006), Teel et al.
for Depression Index (2001), and Grant et al. (2002)
Fatigue Subscale from Inventory of Physical Williams (2000)
Symptoms
Visual Analog Scale for Fatigue Teel et al. (2001)
Caregiver Acceptance of Illness Scale Blake and Lincoln (2000)
adjustment
Social problem- Social Problem Solving Inventory Grant et al. (2002)
solving abilities
Sorrow Recurrent Sorrow Inventory Teel et al. (2001)
Satisfaction Carer’s Assessment of Satisfaction Smith et al. (2004)
with caregiving
Satisfaction Client Satisfaction Questionnaire Grant et al. (2002)
with healthcare
Coping Revised Ways of Coping Checklist Cuellar (2002)
Utrecht Coping List van den Heuvel et al. (2001)
Carer’s Assessment of Managing Index Smith et al. (2004)
Carer’s Assessment of Difficulties Smith et al. (2004)
Index
Behavioral
Behavior Bother Scale Modified Behavior Scale Singh and Cameron (2005)
Lifestyle Caregiving Impact Scale Singh and Cameron (2005)
Frequency Author-developed tool Hartke et al. (2006)
of accidents
cortisol, cytokines, or body mass index. None of the caregivers would allow researchers to better compare
studies in this review reported any caregiver bio- results from these variables between studies and al-
logic responses. low expansion of knowledge related to family care-
givers of stroke survivors.
Caregiver Overall Health Only one study (Smith et al., 2004) reported the
Caregiver overall health was operationalized as per- number of health services used by stroke survivors.
ceived health, well-being, and quality of life. Often, Utilization of resources may be an indicator of the
authors did not include clear definitions of these severity of illness, but it may also demonstrate the
concepts or differentiate between them. In the stud- availability and accessibility of resources. Explora-
ies that included a measure of perceived health, the tion of the types of healthcare resources available to
Short Form 36 was the most widely used (38%) both the stroke survivor and caregiver and the utili-
measurement. Measures of well-being and quality of zation of these resources may be an important vari-
life were more varied, with no one measure being able to consider in future research focusing on the
predominant (Table 4). stress and physical health of family caregivers of
stroke survivors.
Discussion and Recommendations for Caregiver Characteristics

Future Research A wide range of variables were measured represent-
Stroke Survivor Characteristics ing caregiver characteristics. Social support was the
Most of the studies reviewed reported demographic most frequently measured variable representing
information, such as gender and age of the stroke caregiver characteristics; however, few studies de-
survivor. Functional status, mental status, and phy- lineated types and quality of social support available
sical health of the stroke survivor were the next three to the caregiver. The caregiver’s appraisal of the
most commonly measured variables. Although the available social support and quality of social support
Barthel Index (Mahoney & Barthel, 1965) was the may be a more important factor in the stress re-
most frequently reported measure of functional sta- sponse than the number of social support resources
tus of the stroke survivor, there were no consistent available. Furthermore, race and culture may medi-
measures of mental status and physical health. Stan- ate the relationship between social support and psy-
dardization of instruments to measure functional chological stress and well-being. Although no
status, mental status, and physical health of the differences were found in the quality of social
TABLE 4. Caregiver Overall Health: Variables and Instruments Used in Reviewed Studies
Variable
Measured Instrument Study
Perceived General Health Questionnaire Draper and Brocklehurst (2007)
health SF-36 Smith et al. (2004); Schure et al. (2006); Sit et al. (2004);
van den Heuvel et al. (2002); van den Heuvel et al.
(2001); Tooth et al. (2005); Bugge et al. (1999); Bakas
and Burgener (2002); and Grant et al. (2002)
Caregiver Reaction Teel et al. (2001)
Assessment-health subscale
Author developed King and Semik (2006) and Williams (2000)
Well-being and Life Satisfaction Index Cuellar (2002)
quality of life World Health Organization Fatoye et al. (2006)
Quality of Life Questionnaire
Quality of Life Visual Analog Scale Franzen-Dahlin et al. (2007)
EuroQoL Franzen-Dahlin et al. (2007)
Bradley’s Well-Being Scale Franzen-Dahlin et al. (2007)
Bakas Caregiving Outcomes Scale Bakas and Burgener (2002)
Satisfaction With Life Scale Blake and Lincoln (2000)
Physical health Charlston Comorbidity Index Singh and Cameron (2005)
Inventory of Physical Symptoms Williams (2000)
support between African American and White care- of life. Clearer, more precise definitions of health in
givers of stroke survivors in a small study by future research of family caregivers of stroke sur-
Cuellar et al. (2002), African American caregivers vivors would allow for a better understanding of the
reported higher social network size when compared impact of caregiving.
with White caregiver. This finding warrants further
exploration with a larger sample. Summary
Only a few studies considered caregiver charac-
Research related to stress and health in family care-
teristics such as financial resources, social class, and
givers of stroke survivors is in its infancy. Although
personality traits. These may be important mediating
24 studies were found that considered the variables
or moderating factors in the interaction between
of stress and health in caregivers of stroke survivors,
stress and health in caregivers of stroke survivors.
few studies reported the interaction between stress
Caregiver Psychobehavioral Responses and health. There was little consistency among stud-
ies related to type of variables measured, especially
The vast majority of studies included a measure of
in regard to caregiver characteristics. Furthermore, a
psychological stress or caregiver burden. However,
wide array of instruments were used to measure
instruments to measure stress and caregiver burden
variables. For example, eight different measures of
were inconsistent. Mood was the next most com-
caregiver stress or burden were identified in the 24
monly measured psychological variable. Surprisingly,
studies reviewed. Theoretical and conceptual frame-
only four studies included a measure of depression.
works guided the choice of variables measured and
Given the strong association between depression and
analysis of relationships between variables in less
physical health (Song, Moser, & Lennie, 2009) in the
than half of the studies reviewed. The use of a the-
general literature, depression may be an important
oretical framework or conceptual model would be
variable to consider in future studies.
useful in identifying variables important to measure,
Caregiver Biologic Responses guiding instrument selection, and elucidating po-
tential relationships among variables. The adapted
No studies reported biologic or physiological re-
PMBC model (Mathews, 2008; Sherwood et al.,
sponses of family caregivers of stroke survivors.
2008), used as a framework for this literature review,
Physiological measures of stress and inflammation,
could provide researchers interested in stress and
such as cortisol, amylase, cytokines, and C-reactive
health in caregivers of stroke survivors a useful
protein, have been assessed in other family caregiver
foundation for guiding their research.
populations and have been found to indicate higher
The duration of caregiving varied widely in the
levels of physiological stress in caregivers when com-
studies reviewed. This may be related to the dif-
pared with controls. For example, in a small recent
ficulty in recruiting family caregivers to participate
study of informal caregivers of brain cancer patients,
in research studies (Newberry et al., in press). How-
it was found that caregivers demonstrated significant
ever, a better understanding of the trajectory of fam-
changes in salivary amylase, a marker of the sym-
ily caregiving would help identify time points when
pathetic nervous system, as compared with the con-
caregivers may be particularly vulnerable to the
trol group (Rohleder, Marin, Ma, & Miller, 2009).
stresses of caregiving, allowing clinicians to closely
In another study, salivary cortisol levels were sig-
monitor at-risk family members.
nificantly higher in caregivers of Alzheimer’s pa-
Future research guided by a theoretical frame-
tients than in a noncaregiver control group (Wahbeh,
work, consistent instruments to measure variables,
Kishiyama, Zajdel, & Oken, 2008). Physiological
and standardized measurement time points would al-
markers may augment psychological measures and
low for better comparison of findings across studies,
assist in identifying family caregivers of stroke sur-
thus enabling clinicians to better understand the
vivors who are at particular risk of morbidity and
health risks of family caregivers of stroke survivors
mortality from diseases fostered by excessive stress
and develop tailored interventions to optimize their
and inflammation.
health. Collaboration among family caregiver re-
Caregiver Overall Health searchers is imperative as we advance this important
area of inquiry and seek to provide the best possible
There was some variation in the literature about the
care to family caregivers.
definition of health of caregivers. Although some
studies defined health in terms of physical symp-
toms, others operationalized it as perceived health, Acknowledgments
most commonly measured with the Short Form 36 Dr. Saban is supported by a 3-year Veterans Af-
(Ware & Sherbourne, 1992), or well-being or quality fairs Health Service Research and Development
Postdoctoral Fellowship (TPN-42-001). Dr. Hynes is Hamer, M., Gibson, E. L., Vuononvirta, R., Williams, E., &
supported by a 5-year Veterans Affairs Health Ser- Steptoe, A. (2006). Inflammatory and hemostatic responses
to repeated mental stress: Individual stability and ha-
vice Research and Development Service Research bituation over time. Brain, Behavior, and Immunity, 20,
Career Scientist Award. The views expressed do not 456Y459.
necessarily reflect the position or policy of the De- Hartke, R. J., King, R. B., Heinemann, A. W., & Semik, P.
partment of Veterans Affairs. The authors express (2006). Accidents in older caregivers of persons surviving
their gratitude to the anonymous article reviewers stroke and their relation to caregiver stress. Rehabilitation
Psychology, 51, 150Y156.
whose thought-provoking feedback helped strengthen
Kavelaars, A., & Heijnen, C. J. (2006). Stress, genetics, and
this article. immunity. Brain, Behavior, and Immunity, 20, 313Y316.
King, R. B., & Semik, P. E. (2006). Stroke caregiving: Difficult
References times, resource use, and needs during the first 2 years.
Altuna, M. E., Lelli, S. M., San Martin de Viale, L. C., & Journal of Housing for the Elderly, 32, 37Y44.
Damasco, M. C. (2006). Effect of stress on hepatic 11beta- Kreutzer, J. S., Rapport, L. J., Marwitz, J. H., Harrison-Felix, C.,
hydroxysteroid dehydrogenase activity and its influence on Hart, T., Glenn, M., et al. (2009). Caregivers’ well-being
carbohydrate metabolism. Canadian Journal of Physiology after traumatic brain injury: A multicenter prospective in-
and Pharmacology, 84, 977Y984. vestigation. Archives of Physical Medicine and Rehabilita-
Attari, A., Sartippour, M., Amini, M., & Haghighi, S. (2006). tion, 90, 939Y946.
Effect of stress management training on glycemic control Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal and
in patients with Type 1 diabetes. Diabetes Research and coping. New York: Springer.
Clinical Practice, 73, 23Y28. Lee, S., Colditz, G. A., Berkman, L. F., & Kawachi, I. (2003).
Bakas, T., & Burgener, S. C. (2002). Predictors of emotional Caregiving and risk of coronary heart disease in U.S.
distress, general health, and caregiving outcomes in family women: A prospective study. American Journal of Preven-
caregivers of stroke survivors. Topics in Stroke Rehabili- tive Medicine, 24, 113Y119.
tation, 9, 34Y45. Louie, S. W., Liu, P. K., & Man, D. W. (2006). The effec-
Berg, A., Palomaki, H., Lonnqvist, J., Lehtihalmes, M., & tiveness of a stroke education group on persons with stroke
Kaste, M. (2005). Depression among caregivers of stroke and their caregivers. International Journal of Rehabilita-
survivors. Stroke, 36, 639Y643. tion Research, 29, 123Y129.
Bremner, J. D. (2006). Traumatic stress: Effects on the brain. Mahoney, F., & Barthel, D. (1965). Functional evaluation: The
Dialogues in Clinical Neuroscience, 8, 445Y461. Barthel Index. Maryland State Medical Journal, 14, 61Y65.
Brummett, B. H., Babyak, M. A., Siegler, I. C., Vitaliano, P. P., Mathews, K. (2008). Pittsburgh MindYBody Center. Retrieved
Ballard, E. L., Gwyther, L. P., et al. (2006). Associations September 28, 2009, from the Pittsburgh MindYBody
among perceptions of social support, negative affect, and Center Web site: http://pmbcii.psy.cmu.edu/
quality of sleep in caregivers and noncaregivers. Health McLoone, P. (2009). 2001 Carstairs Scores for ST, England
Psychology, 25, 220Y225. and Wales. Retrieved from the Office for National Statistics
Bugge, C., Alexander, H., & Hagen, S. (1999). Stroke patients’ Web site: http://www.statistics.gov.uk/statbase/Product.
informal caregivers. Patient, caregiver, and service factors asp?vlnk=14068&More=n
that affect caregiver strain. Stroke, 30, 1517Y1523. Miller, G. E., Rohleder, N., Stetler, C., & Kirschbaum, C.
Cameron, J. I., Franche, R. L., Cheung, A. M., & Stewart, D. E. (2005). Clinical depression and regulation of the inflam-
(2002). Lifestyle interference and emotional distress in family matory response during acute stress. Psychosomatic Med-
caregivers of advanced cancer patients. Cancer, 94, 521Y527. icine, 67, 679Y687.
Carod-Artal, F. J., & Egido, J. A. (2009). Quality of life after Mills, P. J., Ancoli-Israel, S., von, K. R., Mausbach, B. T.,
stroke: The importance of a good recovery. Cerebrovascu- Aschbacher, K., Patterson, T. L., et al. (2009). Effects of
lar Diseases, 27(Suppl. 1), 204Y214. gender and dementia severity on Alzheimer’s disease care-
Cuellar, N. G. (2002). A comparison of African American & givers’ sleep and biomarkers of coagulation and inflamma-
Caucasian American female caregivers of rural, post- tion. Brain, Behavior, and Immunity, 23, 605Y610.
stroke, bedbound older adults. Journal of Housing for the Mohr, D. C., & Pelletier, D. (2006). A temporal framework for
Elderly, 28, 36Y45. understanding the effects of stressful life events on inflam-
Draper, B., Bowring, G., Thompson, C., Van Heyst, J., Conroy, mation in patients with multiple sclerosis. Brain, Behavior,
P., & Thompson, J. (2007). Stress in caregivers of aphasic and Immunity, 20, 27Y36.
stroke patients: A randomized controlled trial. Clinical National Family Caregiver Association. (2007). Caregiving sta-
Rehabilitation, 21, 122Y130. tistics. Retrieved from http://www.thefamilycaregiver.org/
Fatoye, F. O., Komolafe, M. A., Adewuya, A. O., & Fatoye, G. K. who_are_family_caregivers/care_giving_statstics.cfm
(2006). Emotional distress and self-reported quality of life Newberry, A., Sherwood, P., Hricik, A., Brady Ver, H. N.,
among primary caregivers of stroke survivors in Nigeria. Bradley, S., Kuo, J., et al. (in press). Understanding
East African Medical Journal, 83, 271Y279. recruitment and retention in neurological research. Journal
Grant, J. S., Elliott, T. R., Weaver, M., Bartolucci, A. A., & of Neuroscience Nursing.
Giger, J. N. (2002). Telephone intervention with family Owen, N., Poulton, T., Hay, F. C., Mohamed-Ali, V., &
caregivers of stroke survivors after rehabilitation. Stroke, Steptoe, A. (2003). Socioeconomic status, C-reactive
33, 2060Y2065. protein, immune factors, and responses to acute mental
Grasel, E. (2002). When home care endsVchanges in the stress. Brain, Behavior, and Immunity, 17, 286Y295.
physical health of informal caregivers caring for dementia Pringle, J., Hendry, C., & McLafferty, E. (2008). A review of
patients: A longitudinal study. Journal of the American the early discharge experiences of stroke survivors and
Geriatrics Society, 50, 843Y849. their carers. Journal of Clinical Nursing, 17, 2384Y2397.
Robinson, B. C. (1983). Validation of the Caregiver Strain Blackwell, P. H., Acton, G. J., et al. (2004). Are there sex
Index. Journal of Gerontology, 38, 344Y348. differences in emotional and biological responses in spousal
caregivers of patients with Alzheimer’s disease? Biological
Rohleder, N., Marin, T. J., Ma, R., & Miller, G. E. (2009).
Research for Nursing, 5, 319Y330.
Biologic cost of caring for a cancer patient: Dysregulation
of pro- and anti-inflammatory signaling pathways. Journal van den Heuvel, E. T., de Witte, L. P., Schure, L. M.,
of Clinical Oncology, 27, 2909Y2915. Sanderman, R., & Meyboom-de, J. B. (2001). Risk factors
for burn-out in caregivers of stroke patients, and possibili-
Rosamond, W., Flegal, K., Friday, G., Furie, K., Go, A.,
ties for intervention. Clinical Rehabilitation, 15, 669Y677.
Greenlund, K., et al. (2007). Heart disease and stroke
statisticsY2007 update: A report from the American Heart van den Heuvel, E. T., Witte, L. P., Stewart, R. E., Schure, L.
Association Statistics Committee and Stroke Statistics M., Sanderman, R., & Meyboom-de, J. B. (2002). Long-
Subcommittee. Circulation, 115, e69Ye171. term effects of a group support program and an individual
support program for informal caregivers of stroke patients:
Schlote, A., Richter, M., Frank, B., & Wallesch, C. W. (2006).
Which caregivers benefit the most? Patient Education and
A longitudinal study of health-related quality of life of first Counseling, 47, 291Y299.
stroke survivors’ close relatives. Cerebrovascular Dis-
eases, 22, 137Y142. van Exel, N. J., Koopmanschap, M. A., van den, B. B.,
Brouwer, W. B., & van den Bos, G. A. (2005). Burden of
Schure, L. M., van den Heuvel, E. T., Stewart, R. E., informal caregiving for stroke patients. Identification of
Sanderman, R., de Witte, L. P., & Meyboom-de, J. B. caregivers at risk of adverse health effects. Cerebrovascu-
(2006). Beyond stroke: Description and evaluation of an lar Diseases, 19, 11Y17.
effective intervention to support family caregivers of stroke
patients. Patient Education and Counseling, 62, 46Y55. Vanhook, P. (2009). The domains of stroke recovery: A
synopsis of the literature. Journal of Neuroscience Nurs-
Sherwood, P. R., Given, B. A., Donovan, H., Baum, A., Given, ing, 41, 6Y17.
C. W., Bender, C. M., et al. (2008). Guiding research in
Vig, R. S., Forsythe, P., & Vliagoftis, H. (2006). The role of
family care: A new approach to oncology caregiving.
stress in asthma: Insight from studies on the effect of acute
Psycho-Oncology, 17, 986Y996.
and chronic stressors in models of airway inflammation.
Simmons, D. A., & Broderick, P. A. (2005). Cytokines, stressors, Annals of the New York Academy of Sciences, 1088, 65Y77.
and clinical depression: Augmented adaptation responses
von, K. R., Dimsdale, J. E., Mills, P. J., Ancoli-Israel, S.,
underlie depression pathogenesis. Progress in Neuro-
Patterson, T. L., Mausbach, B. T., et al. (2006). Effect of
Psychopharmacology and Biological Psychiatry, 29,
Alzheimer caregiving stress and age on frailty markers
793Y807.
interleukin-6, C-reactive protein, and D-dimer. Journals of
Singh, M., & Cameron, J. (2005). Psychosocial aspects of Gerontology. Series A, Biological Sciences and Medical
caregiving to stroke patients. AXON, 27, 18Y24. Sciences, 61, 963Y969.
Sit, J. W., Wong, T. K., Clinton, M., Li, L. S., & Fong, Y. M., Wahbeh, H., Kishiyama, S. S., Zajdel, D., & Oken, B. S. (2008).
(2004). Stroke care in the home: The impact of social Salivary cortisol awakening response in mild Alzheimer
support on the general health of family caregivers. Journal disease, caregivers, and noncaregivers. Alzheimer Disease
of Clinical Nursing, 13, 816Y824. and Associated Disorders, 22, 181Y183.
Ski, C., & O’Connell, B. (2007). Stroke: The increasing com- Ware, J., & Sherbourne, C. (1992). The MOS 36-item-short-
plexity of carer needs. Journal of Neuroscience Nursing, form health survey (SF-36). Medical Care, 30, 473Y483.
39, 172Y179. Ware, J. E., Kosinski, M., Turner-Bowker, D. M., & Gandek, B.
Smith, L. N., Norrie, J., Kerr, S. M., Lawrence, I. M., (2002). How to score version 2 of the SF-12 Health Survey.
Langhorne, P., & Lees, K. R. (2004). Impact and Lincoln, RI: QualityMetric.
influences on caregiver outcomes at one year post-stroke. Wiesli, P., Krayenbuhl, P. A., Kerwer, O., Seifert, B., & Schmid,
Cerebrovascular Diseases, 18, 145Y153. C. (2007). Maintenance of glucose control in patients with
Song, E. K., Moser, D. K., & Lennie, T. A. (2009). Rela- type 1 diabetes during acute mental stress by riding high-
tionship of depressive symptoms to the impact of physical speed rollercoasters. Diabetes Care, 30, 1599Y1601.
symptoms on functional status in women with heart failure. Williams, A. (1994). What bothers caregivers of stroke victims?
American Journal of Critical Care, 18, 348Y356. Journal of Neuroscience Nursing, 26, 155Y161.
Teel, C. S., Duncan, P., & Lai, S. M. (2001). Caregiving expe- Williams, A. M. (2000). Distress and hardiness: A comparison
riences after stroke. Nursing Research, 50, 53Y60. of African-American and White caregivers. Journal of
Thompson, R. L., Lewis, S. L., Murphy, M. R., Hale, J. M., National Black Nurses Association, 11, 21Y26.

Measures of Psychological Stress and Physical Health in Family Caregivers of Stroke Survivors A Literature Review

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Measures of Psychological Stress and Physical Health in Family Caregivers of Stroke Survivors A Literature Review

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128 Journal of Neuroscience Nursing

Measures of Psychological Stress and Physical

Background 5.5 million stroke survivors in the United States

physical health in caregivers of stroke survivors is im-

FIGURE 1 Caregiver of Stroke Survivor Conceptual Model

TABLE 1. Stroke Survivor Characteristics: Variables and Instruments Used in Reviewed

TABLE 2. Caregiver Characteristics: Variables and Instruments Used in Reviewed Studies

TABLE 3. Caregiver Psychobehavioral Responses: Variables and Instruments Used in

Discussion and Recommendations for Caregiver Characteristics

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