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Running Head: Family Caregiver Role and Burden
Family Caregiver Role and Burden Related to
Gender and Family Relationships
Marie-Luise Friedemann, PhD, RN
Professor Emerita
Florida International University, College of Nursing and Health Sciences
Mailing Address: 55 Alison Ave.
Panacea, FL, USA 32346
Phone: 850-984-0133
Email: friedemm@fiu.edu
Kathleen C. Buckwalter, PhD, RN, FAAN
Professor Emerita
The University of Iowa, College of Nursing
Mailing Address: 2252 Cae Dr.
Iowa City, IA, USA 52246
Phone: 319-351-2712
Email: Kathleen-buckwalter@uiowa.edu
Keywords: elderly, family caregivers, gender roles, adult children, spouse caregivers,
multicultural, quantitative research
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Running Head: Family Caregiver Role and Burden
Marie-Luise Friedemann, PhD, RN, is Professor Emerita at Florida International University,
College of Nursing and Health Sciences in Miami, Florida. She is best known for the Theory of
Systemic Organization, a family and nursing theory known internationally. The Assessment of
Strategies in Families (ASF-E) she developed has been translated in several languages and
adapted to various cultures and populations. It is used predominantly in South America and
Europe. Dr. Friedemann’s research interests focus on family caregiving at home and in
institutions. Recent publications related to family nursing include:
Friedemann, M. L., Newman, F. L., Buckwalter, K. C., Montgomery, R. J. (2014). Resource
need and use of multiethnic caregivers of elders in their homes. Journal of Advanced
Nursing, 70(3), 662-673. doi:10.1111/jan12230
Friedemann, M. L., Buckwalter, K. C., Newman, F. L., & Mauro, A. C. (2013). Patterns of
caregiving of Cuban, other Hispanic, Caribbean Black, and White elders in South Florida.
Journal of Cross-Cultural Gerontology, 28(2), 137-152. doi: 10.1007/s10823-013-9193-6
Pierce, L. L., Steiner, V., Cervantez Thompson, T. L., & Friedemann, M. L. (2013). Linking
theory with qualitative research through study of stroke caregiving families.
Rehabilitation Nursing. Advance online publication. doi: 10.1002/rnj.83
Friedemann, M. L. (1995). The Framework of Systemic Organization: A conceptual approach to
families and nursing. Thousand Oaks, CA: SAGE and a German version of the same
book: Friedemann, M. L., & Koehlen, C. (2010) Familien- und umweltbezogene Pflege
[Family and environment-focused care] (3rd ed.). Bern, Switzerland: Verlag Hans Huber.
Kathleen Coen Buckwalter, PhD, RN, FAAN, is Co-Director, National Health Law and Policy
Resource Center, College of Law, University of Iowa and Professor of Research & Distinguished
Nurse Scientist in Aging Donald W. Reynolds Center of Geriatric Nursing Excellence, College
of Nursing, Oklahoma University, Health Sciences Center. She is also a Professor Emerita at the
University of Iowa College of Nursing. Dr. Buckwalter is recognized internationally for her
research in psychiatric nursing, aging, and long term care, and has a sustained record of private
and federal support related to the evaluation of clinical nursing interventions for geropsychiatric
populations. Her particular interest is in behavioral management strategies for rural caregivers of
persons with dementia and the effectiveness of community programs to prevent, minimize, and
treat psychiatric problems in the rural elderly. Recent publications related to family caregiving
include:
Friedemann, M. L., Buckwalter, K. C., Newman, F. L., & Mauro, A. C. (2013). Patterns of
caregiving of Cuban, other Hispanic, Caribbean Black, and White elders in South Florida.
Journal of Cross-Cultural Gerontology, 28(2), 137-152. doi: 10.1007/s10823-013-9193-6
Robinson, K. M., Buckwalter, K.C., & Reed, D. (2013). Differences between dementia
caregivers who are users and nonusers of community services. Public Health Nursing,
30(6), 501-510. doi: 10.1111/phn.12041
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Running Head: Family Caregiver Role and Burden
Buckwalter, K. C., & Davis, L. L. (2011). Elder caregiving in rural communities. In R. C.
Talley, K. Chwalisz, & K. C. Buckwalter. (Eds.), Rural caregiving in the United States:
Research, practice, policy (pp. 33-46). New York, NY: Springer Verlag.
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Running Head: Family Caregiver Role and Burden
Abstract
This study described and contrasted family caregivers and explored the effect of gender
and family relationship on the caregiver’s role perception, workload, burden, and family help.
Home care agencies and community organizations assisted with the recruitment of 533
multicultural, predominantly Latino caregivers who were interviewed at home. The Caregiver
Identity Theory guided the study. Survey instruments were standardized tools or were constructed
and pretested for this study. Descriptive statistics and t-test analyses assisted in describing the
sample and multivariate analyses were used to contrast the caregiver groups. Findings suggested a
gendered approach to self-appraisal and coping. Men in this predominantly Latino and Caribbean
sample felt less burden and depression than women who believed caregiving is a female duty.
Family nurses should pay attention to the most vulnerable groups: older spouses resistant to using
family and community resources and hard-working female adult children, and assess each family
situation individually.
Acknowledgements: This study was supported by the Florida International University MBRS
grant, SCORE Project NIHSO6GM08205 National Institutes of Health, National Institute of
General Medical Sciences.
Address all correpondence to: Dr. Marie-Luise Friedemann, P.O. Box 1079, Panacea, FL, 32346;
Email: friedemm@fiu.edu
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Running Head: Family Caregiver Role and Burden
According to a 2010 survey of the Pew Research Center, 30% of the U.S. population
perform the role of family caregiver (Fox & Brenner, 2012). As the life span of seniors increases
with better medical care, families are increasingly forced into the caregiver role, and since the
number of available siblings in families has become smaller, many of these family caregivers
have to carry the responsibilities alone or with little help.
As of today, the majority of caregivers worldwide are women (American Psychological
Association, 2009). Nevertheless, in the United States, the proportion of male caregivers has
recently grown to 45% (Fox & Brenner, 2012), and the responsibilities males assume have
expanded (Baker, Robertson, & Connelly, 2010). Yet, researchers have long discovered
significant differences in caring patterns and responses to caregiving between men and women
caregivers (Gibbons et al., 2014; McDonnell & Ryan, 2013), as well as between spouses and
other family members. Understanding coping of caregivers of older relatives and their families,
and differences based on gender or relationship are critical for researchers and clinicians. This
study is the first to describe and contrast caregiver, care recipient, and family variables in a
multicultural sample from the greater Miami area of South Florida, addressing the following
research questions:
1) How do male and female spouses and male and female adult children differ in
demographic, care recipient, caregiver, and family variables?
2) What variables are associated with the caregivers’ perception of burden and the
culturally defined caregiver role in each of the four groups?
3) What variables influence the workload of caregivers and help from the family in
each of the four groups?
Male and Female Caregivers
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Running Head: Family Caregiver Role and Burden
The decision to take care of a relative is often driven by necessity for both genders and
thus not a voluntary act (Papastavrou, Kalokerinou, Papacostas, Tsangari, & Sourtzi, 2007). Such
a decision may lead to extensive changes in the organization of the household, roles and functions
of family members, ability to work outside the home, or social engagements (Pinquart &
Sörenson, 2006). Studies show that with increasing demands, caregiving responsibilities compete
with time and energy for the family, outside work, and personal health (Dolan & Thien, 2008;
Scharlach, Gustavson, & Dal Santo, 2007).
Stress and burden induced by such changes affect women more than men. Papastavrou
and colleagues (2007) explain that many women in their study in Cyprus did not have the
necessary knowledge or preparation for the caregiving role, but were expected to perform in this
capacity because they were female. The success of mastering caregiving stress depends on the use
of available physical resources and ways of coping with emotional demands. Calasanti and King
(2007) observed that women perceived their work as an extension of their usual role. Their
caregiving work was part of their self-definition and an expectation by family and society, but
many challenges became at times difficult.
A general thread throughout comparative studies seems to be the conclusion that care is
structured along gender roles and values (Calasanti & King, 2007; Robinson, Bottorff, Pesut,
Oliffe, & Tomlinson, 2014). Prior to the turn of the century, researchers suggested that gender
roles were necessary for healthy family functioning and that women were naturally drawn to
care, because they were best suited for the work (Campbell, 2010). Campbell (2010) then
explained a shift in theoretical thinking to viewing societal pressure as a considerable force
dictating women’s caring behavior according to their gender. Since women learn their gender role
as they grow up, their sense of obligation feels to them as if it were an inborn trait and caregiving
a source of fulfillment of their natural role. Nevertheless, they feel societal pressure when they
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Running Head: Family Caregiver Role and Burden
decide against offering their caregiving services and often respond with guilt, because the world
around them considers them morally deficient (Kittay, 2001; Sanders & Power, 2009). The
socialization process (Robinson et al., 2014) and, therefore, the type and extent of moral
obligation differ between men and women (Sanders, 2007; Sanders & Power, 2009). Even when
filial obligation is high, a choice to decline giving care is easier for men who feel free to use
outside resources without guilt (Calasanti & King, 2007).
Authors (Calasanti & King, 2007; Robinson et al., 2014) explain that male caregivers
experience societal pressure to uphold masculinity. In the U.S., the world of work presents a way
to practice masculinity. In the family caregiving context, therefore, men convert the caregiving
role into a work situation with challenging problems to be solved and feel proud of their
achievements (Phinney, Dahlke, & Purves, 2013). Doing that, they can escape into the masculine
world (Calasanti & King, 2007). Accordingly, researchers (Calasanti & King, 2007; Robinson et
al., 2014; Russell, 2007) found that male caregivers of Alzheimer’s patients focused closely on
necessary tasks, by avoiding disruption and distractions, and blocked their emotional reactions.
The finding of many studies that women perceive more stress and burden than men (e.g.
Hong & Kim, 2008; Thompson et al., 2004) or men less than women (Sander, 2007; Stewart et
al., 2014) is consistent with gender role theory. Authors have reported that female caregivers are
more emotionally connected to the patient than men, sacrifice their social life (Beeber &
Zimmerman, 2012), and ask for little help from others, even if they are available (Bédard et al.,
2005; Brank & Wylie, 2014).
Other authors suggest that women are more affected by problematic behaviors of the care
recipient and therefore suffer more depression than men (Conde-Sala, Garre-Olmo, Turro-
Garriga, Vilalta-Franch, & Lopez-Pousa, 2010; Papastavrou et al., 2007). They explain this by
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Running Head: Family Caregiver Role and Burden
female coping methods. Women resort to emotional coping strategies, and since such strategies
are related to a higher sense of burden (Papastavrou et al., 2007), emotional coping can also lead
to depression (Etters, Goodall, & Harrison, 2008). Nevertheless, men also suffer burden,
watching the condition of their loved one deteriorate. In fact, Akpinar, Küçükgüçlü, and Yener
(2011) found emotional burden to be similar in both genders, but men were less likely to admit
their negative feelings (Baker, Robertson, & Connelly, 2010). Sanders and Power (2009) reported
that men processed their emotions individually, without sharing them.
Assessing burden was also challenging in research with Mexican caregivers of both
genders who had strong family commitment and could not admit to negative feelings since
acknowledgement of burden was culturally unacceptable (Evans, Belyea, Coon, & Ume, 2012).
Since most research was done with White samples, much is unknown about the response of ethnic
caregivers about their role and responsibilities, a reason to conduct this study with minority
participants.
Spouse and Adult Child Caregivers
Researchers in caregiving have long recognized that spouses represent a group with
characteristics distinct from adult children and other family members and warn against
generalizing research findings from mixed samples (Savundranayagam, Montgomery, &
Kosloski, 2011). Spousal caregivers experience more burden and depression than other family
members, and their well-being and self-efficacy are lower (Pinquart & Sörenson, 2003). Across
all ethnicities, spouses give care for more hours and perform more tasks than other family
members (Marks, Lambert, & Choi, 2002). In spite of receiving the least help from family and
friends (Bédard et al., 2005), spouses are most reluctant to hire professional helpers or use
community services, especially if they are women (Seltzer & Li, 2000). Consequently, male and
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Running Head: Family Caregiver Role and Burden
female spouses report more serious issues around their ability to fulfill their caregiving role and
the most negative health effects (Bédard et al., 2005).
Many other studies also document the ill effects of caregiving on physical and mental
health (e.g. Pinquart & Sörenson, 2007; Schulz & Martire, 2004) without looking at group
differences. Explaining why spousal caregivers differ, Beeson (2003) reported that for them, the
marriage is the most significant relationship in their lives. Distress evolves from subjective
interpretations of the caregiving situation rather than from the caregiving workload
(Savundranayagam et al., 2011). Consequently, for caregiving spouses, emotional burden
involves anxiety about the possible loss of the relationship with their spouse (Savundranayagam
et al., 2011). Spouses are reluctant to turn care over to others and, when employing services, they
use them for as short a time as possible (Robinson, Buckwalter, & Reed, 2005). Robinson and
colleagues (2005) proposed that spouse caregivers of Alzheimer patients in their sample may have
felt that using services was betraying the spousal relationship.
With this study, we explored whether such differences also exist in a multiethnic sample.
The literature is not clear about the issue. Savundranayagam et al. (2011), for example, report that
older, very committed spouses who have cared for their partner for many years tend to be a rather
homogeneous group across ethnicities. Family-centered values often turn caregiving into a
positive experience for Hispanics (Scharlach et al., 2006) and perhaps for other groups as well.
Mausbach and colleagues (2006), however, claim that young and more acculturated caregivers are
less able to perceive the positive aspects of caregiving.
Clearer differences were reported relative to the caregivers’ willingness to accept help
from the family or the community. African American caregivers were found to have the strongest
communal view of caregiving of all racial groups, in that they were able to line up most family
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Running Head: Family Caregiver Role and Burden
assistance (Feld, Dunkle, & Schroepfer, 2004). Beeber and Zimmerman (2012) describe diverse
and complex arrangements of sharing work and making decisions in the family. In contrast, recent
research suggested that Hispanic caregivers considered it inappropriate to acknowledge burden or
admit the need for help (Evans et al., 2012). Reluctant to delegate tasks or use outside services
rendered them vulnerable to exhaustion and distress (Crist, Garcia-Smith, & Phillips, 2006;
Escandón, 2006; Neary & Mahoney, 2005). It is unclear, however, if this reluctance also applies
to younger adult child caregivers whose filial piety may have weakened with acculturation (Pang,
Jordan-Marsh, Silverstein, & Cody, 2003). In particular, there is little known about the caregiving
role of sons (McDonnell & Ryan, 2013).
Conceptual Model
We adopted Montgomery and Kosloski’s (2013) Caregiver Identity Theory as the basis for
interpretation. According to this theory, caregivers, interacting with the care recipients, undergo a
self-appraisal and determine to what extent their caregiver role agrees with their understanding of
self. If the caregiving responsibilities are incongruent with their belief about what a caregiver
should do, caregivers experience distress. As demands of caregiving increase over time, the role
norm discrepancy tends to become more intense. As pressure mounts, caregivers have two
choices, to either change their role norm or their situation. Ways to keep their role norm
unchanged are to engage the family, use services, or in the extreme case, institutionalize the
patient. In contrast, adjusting the role norm to the situation is a psychological process. Caregivers
need to justify why they should give more care than bargained for. Possible reasons may be that
the caregivers perceive they owe it to the patient, or they cannot trust anyone else to care for the
patient.
Since prior socialization into gender roles seems crucial in the process of developing
caregiver role norms (Montgomery & Kosloski, 2013) we expected women and men caregivers to
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Running Head: Family Caregiver Role and Burden
differ and, since gender socialization has changed from one generation cohort to the next, we also
expected spouses to differ from adult children. We therefore explored caregiver role norms and
evidence of gendered care in our multicultural sample by focusing on differences between male
and female caregivers and between adult children and spouses.
Methods
Sample and Characteristics
A total sample of 613 caregivers of frail older relatives was recruited. Of these, 533 were
either spouses or adult child caregivers and could be used for this analysis; 147 were female
spouses, 277 female adult children, 61 male spouses, and 48 male adult children. An estimation
of sample size for the analysis using multivariate models with a less than pure random sample
required an a priori specification of the number of parameters in the models (Wood & Ross-Kerr,
2005). Since 5 to 10 subjects per parameters are recommended (Wood & Ross-Kerr, 2005) with
no more than 6 parameters in our models (see Results section), the male groups of 61 and 48 were
sufficient in size.
In this sample, all care recipients needed help in at least one activity of daily living and lived
with the caregiver or at a distance of no more than 30 minutes by car. The caregivers were the
persons in charge of care decisions. All participants spoke either English or Spanish. Five local
home health nursing services, all serving mixed ethnic communities, assisted in the random selection of two
thirds of these caregivers and their patients. From the list of patients who had family caregivers, agency
administrators selected 5 to 10 cases per month according to random numbers provided by the researchers.
After being carefully trained, visiting staff recruited the caregivers and referred interested participants to the
researchers. About 20% of the caregivers declined participation. Since those declining were mostly Black,
additional minority participants, mainly from the Caribbean Islands, had to be added with the help of
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Running Head: Family Caregiver Role and Burden
community leaders active in neighborhood organizations. This necessitated a breaking of random procedures
for one third of the sample. The study was approved by the Florida International University Internal Review
Board to protect participant rights and by the Board of the agencies that had one.
The final sample included 38.6% White non-Hispanic caregivers; 12.2% Blacks,
predominantly from the Caribbean; 30.6% Cubans; and 18.6% caregivers from other Hispanic
countries in Central and South America, Mexico and Puerto Rico, and their aged relatives who
suffered from many types of ailments. The dementia rate of these relatives was approximately
60%. Only 6% of the care recipients lived alone, 48% in two-person households, 22% with two
other people, and the remainder with 3 to 8 persons, including children.
Data Collection
Two trained interviewers collected the data in the participants’ homes from 2006 to 2009. They
visited in pairs for reasons of safety and mutual supervision. Before the survey, the caregivers signed an
Informed Consent form, and the care recipients also signed a form consenting to a quick mental status exam.
Care recipients unable to sign were not tested.
Measures. In addition to recording gender, marital status, education, age,
ethnicity, and income of caregivers and care recipients, the survey schedule included data on
household constellation, and the relationship between caregiver and patient. Other caregiver, care
recipient, and family variables were derived from standardized instruments or were measures
constructed and pre-tested for this study. All standardized instruments had been subjected to
factor and reliability analyses that yielded acceptable validity information.
The instruments with their reliability data are listed in Table 1. The Caregiver Health Index
consists of the sum of four self-report items described in Montgomery and Borgotta’s (1985) research:
Health in consideration of age and gender, satisfaction with health, health in comparison with others in the
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Running Head: Family Caregiver Role and Burden
same age range, and interference with daily activities. The instrument assessing Caregiver Depression,
the Patient Health Questionnaire (PHQ-9), is widely accepted as a diagnostic screen (Hueng,
Chung, Kroenke, Delucchi, & Spitzer, 2006), and the Mini Mental Status Exam (Folstein, Folstein, &
McHugh, 1975) is well known as a screen for cognitive status. The Spiritual Perspective Scale (Reed,
1986), an instrument previously tested with Hispanics, was used to measure Spirituality.
[insert Table 1 about here]
The Montgomery Activities of Daily Living/Instrumental Activities of Daily Living (ADL/IADL)
Scale measures physical and instrumental ability as reported by the caregiver (Montgomery & Borgotta,
1985; Montgomery & Kosloski, 2001). The Caregiver-Elder Relationship Scale developed and
tested by Montgomery and Borgotta (1985) provides a subscale of six items for Caregiver
Obligation. Other instruments previously used and tested in Montgomery’s research are the Problematic
Behavior Scale and the Subjective Burden Scale (Montgomery & Borgotta, 1989; Savundranayagam et al.,
2011) of which five items measure stress burden or the effect on the caregivers’ emotions such as worry,
anxiety, and depression, and the other five items measure relationship burden that addresses the caregivers’
perception of being taken advantage of or manipulated.
Since a very short list of possible caregiving tasks was needed, the Caregiving Tasks
Instrument was developed and pretested for this study. The eight items were derived from the results of
factor analyses of caregiving tasks in Montgomery’s Support Project (Montgomery & Borgotta, 1989) and
modified for the purpose of family caregiving at home. The items express possible tasks family caregivers
do: (a) Visits and rides, (b) walks and exercise, (c) transportation, errands, (d) laundry and meals, (e)
bathing, dressing, (f) cleaning up after accidental urine and bowel movements, (g) medical procedures, (h)
handling of a confused patient. To compute the caregivers’ workload (Caregiver # Tasks), the respondents
reported which of the tasks they performed. For Family Help in Number Tasks, caregivers indicated on the
Caregiving Tasks Instrument the tasks they received help with, and for Family Help in Hours, they reported
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Running Head: Family Caregiver Role and Burden
how many hours of help they received for each task.
To compute the variable Caregiver Role Norm Discrepancy with the Caregiving Tasks Instrument,
we first asked participants for each of the eight tasks, whether a relative like themselves (i.e. a daughter)
should (score 1) or should not (score 0) do the task. Then, we deducted the parallel items on the caregiver
workload application of the Caregiving Task Instrument mentioned above. For a total score, we squared the
discrepancies to eliminate negative values and summed the items.
Finally, we assessed the actual Use of (Community) Services with a List of 14 Discretionary
Services known to be available in the area. The caregivers marked the discretionary services they actually
used in the preceding month and we summed the services. We did not include home care service that most
participants had received, based on the findings of Kosloski, Montgomery, and Karner (1999) that medical
and home care services are assigned to patients, do not vary in different populations, and therefore are not
considered discretionary.
Analysis
Due to the ethnically diverse sample, we confirmed the reliability and factor structures of all the
published and unpublished instruments. The first step of the analysis consisted of describing the
characteristics of the four caregiver subgroups: male spouses, female spouses, male adult children, and
female adult children, using frequencies or measures of central tendency. Next, we compared the means of
demographic, caregiver, and patient variables relative to gender and relationship, using t-test analysis for
independent samples, followed by multivariate analyses to explore what variables may influence caregiver
role norm discrepancy and burden, and caregiver workload and family help.
Results
Sample Description
Demographic variables are listed in Table 2 for all caregiver subgroups: male spouses, female
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Running Head: Family Caregiver Role and Burden
spouses, male adult children, and female adult children. The spouse groups included six unmarried couples
in a long-term relationship. Compared to adult children, spouses had lower incomes. Cuban and White
caregivers had the highest percentage of male spouses and Black caregivers the lowest. White caregivers had
the highest percentage of male adult children of all groups. The relative’s primary condition requiring care
was reported by the caregivers. Table 2 shows only the 5 most frequent conditions; 15 additional conditions
were mentioned in the “other” category. Spouses cared for more stroke patients than adult children und for
fewer patients who had nothing but physical disabilities. The numbers in the caregiver subgroups, however,
were not large enough to allow statistical comparisons. Of note in the group of male adult children was the
high number of single men taking care of their parents (almost 65% of the male adult children).
[insert Table 2 about here]
Sample Differences
Table 3 contrasts the sample means, standard deviations, and score ranges of the study variables. T-
tests estimated the significance of the differences in means between males and females, spouse and adult
children. Spouses were older than adult child caregivers (t = 129.79, p< .001) and male spouse caregivers
were older than female spouses (t = 3.96, p< .001). Male caregivers were involved in fewer caregiving tasks
(t = 1.94, p = .05) than women. Most notable were the male adult child caregivers who spent the least time
giving care of all groups (see Table 3), while the caregiving work of female adult children was comparable
to the harder working spouses. The same male adult child caregivers also reported a smaller role norm
discrepancy than female adult children (t = -4.85, p< .001) and both spouse groups. Male caregivers in
general were less spiritual than females (t = 5.50, p<.001).
[insert Table 3 about here]
In terms of obligation to care, male spouses scored significantly higher than female spouses (t = 3.29,
15
Running Head: Family Caregiver Role and Burden
p = .001), but both spouse groups felt more obligation than adult children of both genders (t = 3.26, p = .
001). In spite of their high obligation, male spouses scored less burden than female spouses (t = 2.52, p = .
01) and less than the adult child groups. Female adult child caregivers received the most family help
followed by male adult children. In general, spouses received significantly less help than adult children (t =
-.603, p< .001) and males less than females (t = -2.62, p< .01), in spite of their advanced age. The relatives
taken care of by male adult children had fewer functional limitations than those of female adult children (t =
2.99, p<.01) and the patients of female adult children were significantly more cognitively impaired than
those in all other groups (t = 2.11, p<.05). Finally, the use of community services was negligible across the
sample with little over 1 service on the average of a total of 14 possible services. The difference in the
number of services was not significant between men and women or between spouses and adult child
caregivers. Likewise, differences in caregiver health and the care recipients’ problem behaviors were not
significant.
Variables Influencing Caregiver Burden and Role Norm Discrepancy
In order to explore which of the variables affected the caregivers, we conducted multivariate
analyses (Pillai’s Trace) for each group (Adult Child Females, Adult Child Males, Spouse Females, and
Spouse Males), entering caregiver demographics (Age and Ethnicity) as fixed factors, caregiver and patient
variables (Caregiver Health, Spirituality) as co-variants, and the caregivers’ Burden and Role Norm
Discrepancy as dependent variables. In the models with Burden as dependent variable, Caregiver Health
and the intercept of all model variables yielded main and between-subjects effects in all four groups. These
factors explained the largest proportion of Burden among Adult Child Males and Spouse Females (R2 = .24
compared with R2 .07 for Adult Child Females and .04 for Spouse Males). In the models with Role Norm
Discrepancy as dependent variables, effects were also significant but much smaller (R2 = .04 - .09). In
addition to the model intercepts, other variables yielded small between-subjects effects: Spirituality had a
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Running Head: Family Caregiver Role and Burden
significant between-subjects effect in both Adult Child and Spouse Female groups; Caregiver Age became
a contributing factor in Spouse Male and Female groups; Ethnicity alone and in combination with Age had
a significant between-subjects effect in the Spouse Female group.
Variables Influencing Caregiver Workload and Family Help
We repeated the above multivariate analyses, this time entering caregiver demographics (Age and
Ethnicity) as fixed factors, patient variables (ADL/IADL and Problem Behaviors) as co-variants, and the
caregivers’ Workload and Family Help as dependent variables. The models predicted considerable portions
of the Workload variance (R2 = .35 to .46) in all groups. Clearly, the strongest predictor in all models was
Patient ADL/IADL. In addition, but only in the female groups, Patient Problem Behaviors and the intercept
ADL/IADL and Patient Problem Behaviors yielded main and between-subjects effects on the caregivers’
Workload. In predicting Family Help, the Patient ADL/IADL variable had a small between-subjects effect
only in the Adult Child Female group (R2 = .04) and Patient Problem Behaviors had no effect. The model
for Adult Child Males was unique in that Ethnicity with and without the added effect of Caregiver Age was
a strong predictor of Family Help. In that group, the overall model, Ethnicity, and Age predicted 40 % of the
variance of Family Help.
Discussion
In this study, we explored individual and family characteristics in a multicultural sample of
caregivers. These 533 caregivers carried the responsibility of making care-related decisions and were
involved in an average of three to four of eight caregiving tasks (bathing and dressing; cleaning up urine and
BM accidents; medical procedures; laundry; transportation; walking and exercising; taking on rides and
visits; supervising a confused patient). In spite of these challenging tasks, the average caregiver was
relatively healthy. Most caregivers did not have clinical depression, felt a strong obligation to care for the
relative in need, were highly religious, did not feel excessive burden, and perceived that their caregiving
17
Running Head: Family Caregiver Role and Burden
work was what anyone in their family position should do. Thus, the majority seemed to have adjusted their
role norm successfully to the present situation without receiving much help from the family or engaging
community services.
Over two thirds of the caregivers in our sample were minorities, of which about half were Cubans.
Most of the Cubans had immigrated to Florida between the 1960s and 1980s. The other half of the minority
group was composed of more recent immigrants from the Caribbean and other Latin American countries
and a small number of southern-born African Americans. Of the White group (39%), few were born in
Florida; most had moved from northern states and 14% had emigrated from other countries.
Differences Between Male and Female Caregivers
This study addressed three research questions. The first was related to differences between male and
female caregivers and between spouses and adult child caregivers. Male caregivers made up 20% of the
entire sample and among Black caregivers only 15%. Male caregivers were similar to female caregivers in
age, health, education, and use of community services. Other variables, however, suggest that the definition
of a role norm and therefore the caregiving process was structured along cultural and gender rules (Calasanti
& King, 2007; Robinson et al., 2014). Unlike women, men are said to experience little social pressure to
care for relatives (Campbell, 2010). In this study, men had a higher obligation score, but lower burden,
depression, and role norm discrepancy than women. Therefore, one would expect male caregivers to have
entered their job voluntarily for personal, perhaps religious reasons. Rather than being highly burdened by
added responsibilities, literature reports that men accept their caregiving role as a challenge, focus on
necessary tasks (McDonnell & Ryan, 2013, Robinson et al., 2014), and keep emotions apart (Calasanti &
King, 2007).
Among male adult children the proportion of unmarried caregivers was highest. This supports
Campbell’s (2010) observation that being single is a decisive factor for men, determining willingness to
18
Running Head: Family Caregiver Role and Burden
become involved in hands-on care. Nevertheless, in this study, even single men were involved in fewer
caregiving tasks than women, and the relatives they cared for had fewer functional limitations and less
dementia. These findings serve as evidence that men’s caregiver role norm was more flexible. Perhaps, men
were also more willing to change their situation. Being that their relatives were less physically and mentally
impaired, we question if we may have lost male caregivers with patients who needed a higher level of care,
because they had made the decision to institutionalize the relative or turn over the care to outside help
(Ducharme et al., 2007). These patterns of coping seem to act as a mechanism to protect their own
emotional and consequently physical health. They do not, however, serve as a measure of quality of care.
The literature reports that women, unlike men, see their caregiving function as an extension of their
usual role and their caregiving follows the expectation of the family and the society (Calasanti & King,
2007). They may feel obligated to give more of themselves and guilty if they do not, therefore experiencing
more stress and burden than men (Gallicchio et al., 2002). Our findings support this notion, demonstrating
that women did more caregiving work than men, possibly because they were more emotionally involved
with the patient (Bédard et al., 2005; Pinquart & Sörensen, 2003), and suffered more depression than men
(Papastavrou et al., 2007). Even though they received more family help than men, the level of family help
was not extensive and did not significantly reduce their caregiving workload or their burden.
Female spouses were the most vulnerable group of all. Our study supports the findings of
Savunranayagam et al. (2011) that female spouses, like all women caregivers, rather than feeling burdened
because of a heavy workload, reacted emotionally to their situation. Spouses of both genders had a very
high obligation score, signifying strong emotional attachment, but female spouses, in spite of being the most
spiritually focused, had the highest depression scores, felt more burden than male spouses, and, even if not
significantly different, reported less optimal physical health (Seltzer & Li, 2000). Having a lower average
income may also have contributed to the negative effects associated with caregiving.
19
Running Head: Family Caregiver Role and Burden
In contrast to male caregivers, like Papastavrou et al. (2007), our results suggest that women
employed emotionally-based patterns of coping associated with higher burden and depression. Based on
their strong emotional attachment, women did not have the same flexibility as men to adjust their caregiver
role norm to rising demands. Instead, driven by commitment and obligation, they continued caring, often to
the point of exhaustion. Their pattern of intimate involvement does not, however, signify a higher quality of
care than the male pattern. Being less able to resolve role norm discrepancies, women caregivers may put
themselves in danger of going into a crisis and consequently ceasing to be effective as caregivers.
Family help or community resources could prevent such crises. Nevertheless, male and female
spouses alike were very reluctant to ask the family for help or to use community services, perhaps out of
fear to betray their spouse (Robinson et al., 2005). Based on the literature about family-centered values in
Hispanic caregivers (Scharlach et al., 2006), we expected, but did not find, more family help for Hispanic
spouses. Thus, our results upheld the finding of Savundranayagam et al. (2011) that older spouses, highly
committed to caring for their loved ones, constitute a quite homogeneous caregiver group across ethnicities.
In summary, our findings supported the Caregiver Identity Theory (Montgomery & Kosloski, 2013)
and the literature, suggesting a gendered approach to caregiving identity formation and self-appraisal.
Women, especially the spouses, seemed to adhere strongly to values about obligation to care for the family
learned early in life. Men and, to some extent, younger women felt freer to define their role in a way
congruent with their personal situation. Consequently, female spouses seem most vulnerable to emotional
and physical health problems. Another group worthy of being explored in more depth is male adult children
who reported the highest burden. These men, many of whom were single, dedicated themselves to the care
of their parents. Perhaps, they were comparable to the women in filial duty and responsibility, and their
emotional coping set them apart in the masculine world around them.
Predictors of Subjective Burden and Role Norm Discrepancy
20
Running Head: Family Caregiver Role and Burden
This section refers to research question two. According to the Caregiver Identity Theory
(Montgomery & Kosloski, 2013), the perception of burden and the extent of a discrepancy between role
identity and actual caregiving workload are products of self appraisal. The understanding of what the role
should be (role identity) supplies the basis for such an appraisal and depends on a complex interactive
process of influencing factors. The caregivers’ health together with the interaction of the combined group of
predictors (age, ethnicity, spirituality, and the care recipients’ problem behaviors) predicted the level of
subjective burden in all subgroups. With ailing health, caregiving becomes increasingly burdensome;
nevertheless, individual perceptions of the situation of the patient seem to add to a complex self-appraisal
and influence the motivation to give care.
Given this complexity, only a small portion of the variable caregiver role norm could be predicted in
the four groups with the study variables. The most significant predictors seemed to be spirituality in women
and health in men, again referring to the gender differences discussed above. Ethnicity alone and in
combination with age acted as a significant predictor only in the female spouse group. This suggests that in
older immigrant caregivers, cultural values most strongly directed caregiving (Scharlach et al., 2006). Since
Hispanic and Black spouses also were highly spiritual, many must have accepted their role without
questions.
Predictors of Caregiver Workload and Family Help
This section refers to research question three. Based on the Caregiver Identity Theory (Montgomery
& Kosloski, 2013), we hypothesized that gender-based beliefs and the demands of the patient determine the
amount of care given by the primary caregivers and how much families help out. Contrary to that, we found
that the caregivers’ workload in all groups was mainly driven by the functional status of the care recipients.
Also, patients with problem behaviors seemed to demand more work from women. Why this did not hold
for male caregivers can only be speculated. One factor may be the higher rate of dementia among the
21
Running Head: Family Caregiver Role and Burden
relatives taken care of by female adult children.
Family Help in the spouse groups was not available for most spouses. Of the couples, 77% lived
independently without other family members. Even if their children lived close by, many stated verbally
that they did not want to burden their children, since they were busy with jobs and their own families. As
described elsewhere, such couples often took turns caring for each other (Friedemann, 2005). We expected
the extent of family help to be relative to the care demands of the patients. Surprisingly, this held true only
for female adult children. Like other researchers (Bédard et al., 2005; Pinquart & Sörenson, 2003), we
found that male adult children received less help, and speculated along the line of Campbell (2010) that
many took on the caregiving duties out of necessity, because there were no other siblings who could have
helped. Nevertheless, among those who had family close by, older Hispanics, both Cubans and others, were
most likely to receive assistance, suggesting that being Hispanic from an older generation was the best
predictor of family help.
Practice Implications
The above discussion implies that families who care for older relatives are diverse and that their
diversity goes beyond ethnicity. The most vulnerable group is couples living by themselves and not
receiving sufficient help from other family members. Whereas multigenerational households may be more
common in minority populations, in our sample, over three quarters of the spouses of all ethnicities lived in
couple households and many did not have access to families. In fact, family help to spouses amounted only
to an average of 13 minutes for women and 22 for men per week, in spite of their age (67% were over age
70). Health and social service professionals need to pay special attention to the needs of caregiving spouses
who are often at the brink of exhaustion, but are reluctant to ask for help or engage community services.
Before suggesting services to ease their care work, professionals need to develop a trusting relationship,
especially with minority caregivers. A measure of burden and/or depression should be made part of an
22
Running Head: Family Caregiver Role and Burden
initial assessment. Nevertheless, family professionals need to understand that especially minorities may not
admit to feeling burden (Scharlach et al., 2006). Instead of asking about burden, they may want to use other
words such as “difficulties” or “worries”, or they may ask the caregivers and family to describe what is most
difficult for them when giving care to their loved one. A professional approach to minority caregiving
families asks for creativity in overcoming obstacles such as refusal to accept help, insufficient money to pay
for services, or lack of access due to geographical location. A careful assessment of the situation therefore
often involves a session with the extended family during which available resources within and outside the
family can be explored together. At times, the problem rests with a couple’s reluctance to ask for help from
family members. In such cases, professionals may be able to secure help by explaining in convincing terms
the couple’s needs to the extended family. If families cannot provide physical assistance, they may be
willing to help procure a service like adult day care.
An equally careful assessment of the home situation is needed for adult child caregivers. Their
burden is high and depression is likely in situations, where the care recipient has moved into their home and
presents problem behaviors, or where the caregiver needs to work outside the home to make ends meet.
Some families have great skills in organizing their family operation around the person in need of care;
especially Black families have been cited for creative approaches (Feld et al., 2004). Other family systems,
however, do not have the help needed or lack the skills to mobilize others. Professionals may want to
explore possibilities with the family. They should encourage family members to communicate their own
needs to each other and arrive at solutions of sharing the load. Stressors are manifold and cannot be
understood without looking at each situation individually and in depth. Many families are in crisis and
desperately need professionals who can guide them in the right direction. The results of this study should
motivate family professionals to detect vulnerabilities in male and female, spouse and adult child groups of
caregivers and their families. Since differences according to ethnicity were small, professionals should drop
cultural stereotypes and instead explore each family in its own right.
23
Running Head: Family Caregiver Role and Burden
Limitations of the Study and Recommendations for Further Research
The findings of this study are subject to certain limitations. Our inability to recruit
sufficient Black caregivers made it necessary to drop random recruitment procedures for a part
of the minority sample. Consequently, conclusions about ethnic differences have to be made with
caution. The number of male caregivers in the subgroups, especially adult child males, was small
though sufficient to examine differences in the spouse and adult child groups. It was too small,
however, for a further breakdown, for example according to family type or ethnicity variables.
Finally, we interviewed the primary caregivers and the care recipients, but did not have the
resources to include other family members. Therefore, in order to gain understanding of family
systems, we relied on the literature for interpretation. The fact that our findings with minority
caregivers were to a great extent congruent with previous findings in the literature renders
validity to this study.
In spite of limitations, to the best of our knowledge, this study was the first to examine
caregivers’ coping in a multicultural sample, and the findings are relevant for researchers,
practitioners, and policy makers. We used the Caregiver Identity Theory successfully to gain
insight into family caregiving processes, an approach that may be helpful in guiding future
studies.
Based on the low use of services and family help, we suspect that many caregivers cannot
sufficiently meet their needs. Unmet needs over time can lead to distress. If reports of burden
and depression were relatively low at the time of the study interview, the future may show a
different picture. Therefore, future investigations should use multicultural samples with larger
male participation. Immigrant groups should be defined and compared according to the time the
caregivers have spent in the U.S. and their degree of acculturation. Newer studies should
24
Running Head: Family Caregiver Role and Burden
explore challenges to family systems in greater depth, such as family-work conflict, access to
resources, financial stress of caregiving families, and caregiving obligations of descendants of
immigrants.
Caregivers in our study used family help when available. The lack of availability of family
help may be a critical factor, leaving caregivers vulnerable and in need of community services.
In this study, we neither addressed the availability, nor the degree of helpfulness of family or
other outside assistance. We therefore recommend including in future studies the caregiver
perspective about such assistance. Finally, future projects are recommended that explore the
coping process of caregivers, including the role of spirituality, as well as intervention studies
targeting improved access to community resources and rendering programs culturally congruent
and consumer friendly.
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Running Head: Family Caregiver Role and Burden
Table 1
Summary of Measurements
________________________________________________________________________
Variable Instrument # Items Reliability
_________________________________________________________________________
Caregiver Health Health Index 4 α = .82
(Montgomery & Borgotta, 1985) α = .78*
Caregiver Obligation Caregiver-Elder Relationship Scale 6 α = .89
(Montgomery & Borgotta, 1985) α = .88
Caregiver Depression Patient Health Questionnaire (PHQ-9 9 α = .79-.89
(Huang et al., 2006)
Caregiver Spirituality Spiritual Perspective Scale (SPS) 10 α = .96
Caregiver Burden Subjective Burden Scale 10 α = .78-.80
(Montgomery & Borgotta, 1989)
Care Recipient Functioning ADL/IADL Scale 12 α = .83
(Montgomery & Borgotta, 1985) α = .96
CR Problematic Behaviors Problematic Behavior Scale 14 α = .80
(Montgomery & Borgotta, 1985) α = .87*
CR Cognitive Status Mini Mental Status Exam 30 α = .54-.96
(Folstein et al., 1975) α = .92*
Caregiver Number Tasks Caregiving Task Instrument 8 α = .82
Family Help Number Tasks Caregiving Task Instrument 8
Role Norm Discrepancy Caregiving Task Instrument 8 .
Note. * = Results of Pre-Study Pilot Testing
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Running Head: Family Caregiver Role and Burden
Table 2
Frequencies of Caregiver Demographic and Patient Variables in Relation and Gender Groups
______________________________________________________________________________________
Variable Category Female Spouses Male Spouses Female Adult Ch Male Adult Ch
f ( %) f (%) f (%) f (%)_
Marital Status Single/Divorced 4 (2.7) 2 (3.3) 119 (43.0) 31 (64.6)
Married 143 (97.3) 59 (96.7) 138 (49.8) 16 (33.3)
Widowed 20 (7.2) 1 (2.1)
Education < High School 31 (21.1) 14 (23.0) 21 (7.6) 6 (12.5)
High School/GED 36 (24.5) 15 (24.6) 55 (19.9) 11 (22.9)
Post High School Ed. 46 (31.3) 13 (21.3) 101 (36.5) 14 (29.2)
College Degree 34 (23.1) 19 (31.1) 100 (36.1) 17 (35.4)
Income < $15,000 42 (28.6) 21 (34.5) 53 (19.2) 5 (10.4)
$15 – 60,000 69 (46.9) 28 (45.9) 130 (46.9) 27 (56.3)
> 60,000 22 (15.0) 11 (18.0) 86 (31.0) 12 (25.0)
Missing 14 (9.5) 1 (1.6) 8 (2.9) 4
(8.3)
Race/Ethnicity White Non-Hispanic 60 (40.8) 27 (44.3) 96 (34.7) 23 (47.9)
White Hispanic Cuban 46 (31.3) 25 (41.0) 84 (30.3) 8 (16.7)
White Hispanic Other 31 (21.1) 6 (9.8) 52 (18.8) 10 (20.8)
Black/Afro American 10 (6.8) 3 (4.9) 45 (16.2) 7 (14.6)
Patient Living Alone 29 (10.5) 5 (10.4)
Patient Living With Caregiver 147 (100.0) 61 (100.0) 248 (89.5) 43 (89.6)
34
Running Head: Family Caregiver Role and Burden
Patient Gender Male 147 (100.0) 39 (14.1) 9 (18.8)
Female 61 (100.0) 238 (85.9) 39
(81.3)
Patient Primary
Condition Dementia 28 (19.0) 16 (26.2) 60 (21.7) 7 (14.6)
Requiring Care Accident/Injury 23 (15.6) 9 (14.7) 44 (15.9) 6 (12.5)
Heart Problem 23 (15.6) 3 (4.9) 36 (13.0) 10 (20.8)
ADL Difficulties 7 (4.8) 3 (4.9) 44 (15.9) 9
(18.8)
Stroke 17 (11.6) 11 (18.3) 18 (6.5) 2 (4.2)
Others 49 (33.4) 19 (31.0) 75 (27.0) 14 (29.1)
Table 3
Descriptives for Caregiver, Family, and Relative Variables
Variable Female Spouses Male Spouses Female Adult Ch Male Adult Ch
Mean (SD) Mean (SD) Mean (SD) Mean (SD)
____________________________________________________________________________________
_
Caregiver Age 71.73 (9.38) 76.92 (6.38) 53.88 (10.36) 50.94 (12.25)
Caregiver Health 2.64 (.79) 2.38 (.72) 2.41 (.81) 2.29 (.96)
Caregiver Burden 2.72 (1.07) 2.30 (1.10) 2.74 (1.03) 2.78 (1.02)
35
Running Head: Family Caregiver Role and Burden
Caregiver Obligation 3.85 (.32) 3.97 (.19) 3.73 (.49) 3.81 (.47)
Caregiver Spirituality 4.08 (1.18) 3.33 (1.37) 4.13 (1.02) 3.65 (1.38)
CG Norm Discrepancy 3.79 (.30) 3.76 (.32) 3.74 (.35) 3.45 (.54)
Caregiver Depression 6.31 (4.99) 4.07 (4.61) 5.27 (4.76) 4.07 (4.03)
Caregiver # Tasks 3.22 (1.41) 3.21 (1.50) 3.25 (1.63) 2.29 (1.66)
Family Help # Tasks 1.03 (1.62) .61 (1.02) 1.93 (2.08) 1.58 (1.83)
Family Help Hours .36 (.86) .22 (.67) .76 (1.37) .57 (1.06)
Community Services 1.22(1.94) 1.20 (1.89) 1.35 (2.33) 1.37 (2.55)
Relative Age 77.95 (6.99) 75.21 (6.36) 82.33 (8.46) 79.10 (9.63)
Relative ADL/IADL 1.85 (.57) 1.80 (.58) 1.75 (.55) 2.01 (.53)
Relative Cognitive Status 19.06 (11.28) 17.00 (11.88) 15.85 (11.20) 19.90 (10.61)
Relative Problem Behavior 1.69 (.55) 1.63 (.56) 1.69 (.54) 1.55 (.51)
____________________________________________________________________________________
_
36
Running Head: Family Caregiver Role and Burden
Note. Female Spouses n = 147; Male Spouses n = 61; Female Adult Ch n = 277; Male Adult Ch n = 48
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