Journal of Student Research (2013)
Volume 2, Issue 1: pp.
36-42
Research Article
a. Marywood University, Scranton, PA
www.jofsr.
com
36
Physical and Emotional Impacts of the Caregiving
Experience
Pamela R.
Cosper
a
and Cindy L.
Moyer
a
Informal caregiving has become a widespread phenomenon, with family members and friends providing care for patients who
have chronic or terminal illnesses and prefer to remain in their homes.
The physical and emotional impacts of this unpaid work
upon the caregiver can range from minor to severe.
This study sought to identify qualities about the caregiving situation that may
relate to the presentation of physical and/or emotional symptoms in the caregiver through the use of a researcher-generated
survey with a non-random population in rural Pennsylvania.
The authors hypothesized that frequency, duration, and invasiveness
of the caregiving situation would impact upon the caregiver.
Results of the study corroborated those of national studies that
linked negative physical and emotional effects with increased frequency and duration of care.
However, no correlation was found
between positive emotions and the variables tested.
Keywords: Caregiving, Caregiver, Family caregiver, At-home care, Informal caregiving
Introduction
According to the National Alliance of Caregivers (NAC,
2009), “caregivers are defined as those who provide unpaid
care to an adult or a child with special needs…” (p.
2). While
this is a noble undertaking, quite often, informal caregiving is
provided at the physical, emotional, and financial expense of
the caregiver (Brewer & Chu, 2008; NAC, 2009; Perrig-
Chiello & Hutchison, 2010).
Like non-caregiving individuals,
family caregivers are subjected to everyday stressors.
This
process frequently unfolds while the caregiver is also
fulfilling the role of child, spouse, parent, etc.
, thus the aptly
named Sandwich Generation (Jordan & Cory, 2010; Ugwu,
2010).
In addition to the demands of attending to a loved one,
at-home caregivers may also perform or assist in the activities
of daily living for the patient, such as bathing, dressing,
feeding, incontinence care, etc.
The cumulative effect on the
caregiver’s physical and emotional wellbeing often results in
exhaustion, stress-related illness, and mood changes, among
others.
The purpose of this study was to understand how the
demands of the caregiving role affected caregivers physically
and emotionally.
Review of Related Literature
Healthcare services (hospital, nursing home, hospice,
etc.) provided to individuals with age–related illness or
chronic health conditions consume a great deal of resources
from Medicare and Medicaid (Institute of Medicine [IOM],
2008).
According to the National Alliance for Caregiving, in
collaboration with AARP (2009, p.
4): “In the [previous] 12
months, an estimated 65.
7 million people in the U.
S. [had]
served as unpaid family caregivers to an adult or a child”,
with a staggering 31.
2% of households having an individual
who had provided unpaid caregiving within the same time
period (p.
4). Houser and Gibson, on behalf of the AARP
Public Policy Institute (2008), state: “The estimated economic
value of their unpaid contributions was approximately $375
billion in 2007, up from an estimated $350 billion in 2006”
(p. 1).
Although home health and hospice agencies provide care
in private homes, they do not provide around-the-clock care.
Supplemental assistance is often needed; however, this can
present a financial burden for the patient or the family.
The
patient receiving care frequently prefers to reside in his/her
home. Thus, the patient’s spouse, child, sibling, friend, or
other individual undertakes the role of informal, unpaid
caregiver, thereby assuming not only the financial burdens of
care, but the physical and emotional effects as well.
While numerous studies recognize that informal
caregiving provides a tremendous financial adjunct in the care
of veterans, children with special needs, individuals with
intellectual and developmental disabilities, and aging
Americans (Brewer & Chu, 2008; Evercare & NAC, 2007,
2009; Houser & Gibson, 2008; Vitaliano & Katon, 2006), to
date, no legislation exists to support these unpaid caregivers.
Though the economic impact is staggering, it was beyond the
scope of this study.
However, given the overwhelming
numbers of individuals who provide at–home care in
America, the authors chose to focus on the physical and
emotional impacts of caregiving upon the caregiver,
specifically upon those whose loved ones received services
from local home health or hospice agencies in rural
Pennsylvania.
Many studies have reported on the negative effects of
caregiving, such as: declining health of the caregiver, stress,
depression, increased financial burden, and impaired social
and vocational relationships (Brewer & Chu, 2008; Evercare
& NAC, 2007, 2009; Houser & Gibson, 2008; NAC &
AARP, 2009; Perrig-Chiello & Hutchison, 2010; Vitaliano &
Katon, 2006).
In order to augment these findings, the
researchers in the present study examined the relationships
between the frequency, duration and invasiveness of care and
the wellbeing of the caregiver.
Hunt (2003) found that more
recent research has been focused on the positive impacts of
caregiving suggesting “supporting family caregivers
…[may]… improve quality of care and quality of life for both
patients and family caregivers” (p.
31).
In their caregiver
assessment, Monin and Schulz (2010) theorized that the stage
of caregiving (early, middle, or late in the disease process)
Journal of Student Research (2013)
Volume 2, Issue 1: pp.
36-42
Research Article
ISSN: 2167-1907
www.jofsr.
com
37
could be an important indicator of positive impacts in the
caregiving experience, with more positive effects reported by
those providing care in the early stages of illness, possibly
because the caregiver may feel s/he has more control in
helping the care recipient at this early phase.
Additionally,
Ekwall and Hallberg (2007) found that a higher number of
weekly caregiver hours actually indicated a higher level of
caregiver satisfaction.
Likewise, this study sought to ascertain the relationship
between caregiving and the positive or negative impacts
experienced by the caregiver.
To summarize, the following research questions were
considered:
Does the duration of family caregiving impact the
physical or emotional wellbeing of the caregiver?
Does the frequency of physical or household tasks
performed by the caregiver impact the physical or
emotional wellbeing of the caregiver?
Does the provision of high invasive/high intimacy
types of duties (e.
g., ostomy care, wound care,
incontinence care, etc.
) have an impact upon the
physical or emotional wellbeing of caregivers?
Do low invasive/low intimacy types of duties (e.
g.,
feeding, medication administration, grooming) have
an impact upon the physical or emotional wellbeing
of caregivers?
In examining the above questions, the researchers developed
several hypotheses that were evaluated in the study.
They
were:
Providing informal caregiving for extended periods
of time (less than 6 months to more than one year)
will have an impact on the physical states of the
caregiver.
Providing informal caregiving for extended periods
of time (less than 6 months to more than one year)
will have an impact on the emotional states of the
caregiver.
Providing informal caregiving more frequently
(more than 3 days each week) will have an impact
on the physical states of the caregiver.
Providing informal caregiving more frequently
(more than 3 days each week) will have an impact
on the emotional states of the caregiver.
Informal caregivers who engage in high
invasive/high intimacy types of duties (e.
g., ostomy
care, wound care, incontinence care, etc.
) will
experience physical impacts.
Informal caregivers who engage in high
invasive/high intimacy types of duties (e.
g., ostomy
care, wound care, incontinence care, etc.
) will
experience emotional impacts.
Informal caregivers who engage in low
invasive/low intimacy types of duties (e.
g., feeding,
grooming, medication administration, etc.
) will
experience satisfaction.
The independent variables in the above hypotheses were,
respectively: the duration of caregiving; the frequency of
caregiving; and for the last three, the invasiveness and
intimacy of the caregiving duty, to a greater or lesser extent.
These contributing factors in the caregiving experience were
expected to be quite diverse given the myriad caregiving
situations in this study and so were considered independent
based on that diversity.
The dependent variables are the
physical and emotional impacts of caregiving for the first six
hypotheses, with satisfaction being the dependent variable for
the last hypothesis.
Dependent variables in this study were the
measurable outcomes of the influence of the independent
variables upon family caregivers.
Some examples of physical impacts were increased
backaches, headaches and prescription drug use.
Some of the
possible emotional impacts experienced by the caregiver
included increased anger, guilt, fear, and depression.
Satisfaction was defined as the caregiver experiencing
increased levels of compassion, contentment, dependability,
fortune, fulfillment, gratitude, helpfulness, hope, love, peace,
productivity, and supportiveness.
Concurrently, in
experiencing satisfaction, the caregiver would have decreased
feelings of anger, anxiety, depression, exhaustion, fear,
frustration, guilt, helplessness, isolation, worry and feeling
overwhelmed and unappreciated.
Extraneous variables
(factors which the researchers were not measuring or
evaluating) that may have affected the outcomes predicted
were: the caregiver’s own health, age, ethnicity, relationship
to care recipient, and care recipient’s health condition.
Methodology
Sample
Informal caregivers whose loved ones were patients of
rural Pennsylvania home health and hospice agencies were
recruited for this study.
These facilities were approached with
a recruitment letter explaining the purpose of the study and
the researchers’ desire to engage in an anonymous,
confidential sampling method.
Once agencies consented to
participation, in lieu of an informed consent document,
potential respondents received a Participant Letter, which
explained the purpose of the survey, potential risks of
participation, possible benefits of the research, and the right to
refuse participation.
This explanatory letter was used instead
of a Participant Permission Letter in order to maintain the
strictest standards of anonymity in the sampling process.
All
participants were treated in accordance with Federal
Regulations (45 CFR 46) (Office of Human Subjects
Research’s Protection of Human Subjects Regulation, 2005),
the Institutional Review Board (IRB) of Marywood
University (Marywood University, 2011), and the National
Association of Social Workers (NASW) Code of Ethics
(1996, revised 2008).
Because a non-probabilistic convenience sample
(participants not chosen randomly but from a select group of
patient censuses) was used for this study, the researchers did
not have a sampling plan beyond asking agencies to mail the
survey packets to their current patient census and deceased
patients' families.
The authors solicited the assistance of rural
Pennsylvania home health and hospice agencies and hospitals.
The recruitment strategy succeeded in establishing
collaboration with two home health and hospice agencies.
The
total number of survey packets mailed to prospective
participants was 645.
One hundred forty-four individuals
returned surveys.
However, of this 144, 11 were discarded
due to failure to complete the survey, excessive missing data,
Journal of Student Research (2013)
Volume 2, Issue 1: pp.
36-42
Research Article
ISSN: 2167-1907
www.jofsr.
com
38
survey completion by the care recipient instead of the
caregiver, or survey completion by a sole individual caring for
him/herself.
This resulted in a 21% response rate, which was
less than ideal.
Definitions
For purposes of this study, the researchers defined
caregiving as the act of providing physical or supportive care
to an individual who was receiving home care or hospice
services at the time of data collection, January 1, 2012 –
February 15, 2012.
Additionally, the population who had
received hospice services between July – December, 2011
was included to increase sample size.
Caregiving included
household or supportive duties such as, but not limited to,
laundry, meal preparation, grocery shopping, yard
maintenance, financial management, or transportation to
medical appointments.
The caregiver was defined as the
person who provided physical care and/or performed
household duties for the care recipient.
The care recipient
was defined as the person who was admitted to home health
or hospice services and had received assistance from the
caregiver.
Instrumentation and procedures
A researcher-generated survey (Appendix A) was created
consisting of 18 questions, including demographics of the
caregiver, care recipient, duration of care, types of care
provided and the physical and emotional impacts upon the
caregiver.
Likert scales were utilized to assess the types and
frequencies of various services provided, as well as the types
and frequencies of the physical and emotional symptoms
experienced by the caregivers.
The instrument would produce
similar results if respondents completed the survey multiple
times, thereby giving it internal consistency reliability.
Based on the ecological perspective, which involves the
reciprocal relationship between person and environment, the
researchers expected that the type, duration, and frequency of
caregiving tasks would support a concurrent validity in the
measurements of type and frequency of physical and
emotional impacts.
The survey was also designed to collect
extraneous variables that may have impacted the caregiver
experience.
Because the survey instrument was not
thoroughly vetted, three Masters-level professionals reviewed
it for appropriateness of use.
Data was collected
from January 1 - February 15, 2012.
Participants were
provided with self-addressed, stamped envelopes to facilitate
the return of their completed surveys to the researchers.
Participants were asked to assess changes in their physical
status through the duration of their caregiving experience
using a nominal level of measurement (this is not a concern
for me, no change during caregiving, got worse during
caregiving, or got better during caregiving).
Participants were
also asked to assess their emotional response(s) to caregiving
duties by reporting the frequency of occurrence of both
positive and negative emotions.
Specifically, participants
rated their emotional responses based on a Likert scale using
an ordinal level of measurement (never, rarely, sometimes,
often, all the time).
The survey took approximately 15
minutes to complete.
Upon completion of the study, all surveys were placed in
a locked, metal file cabinet in the home of researcher Moyer,
the only person with access.
All records will be destroyed on
June 1, 2014 by shredding of paper documents and deletion of
electronic records.
Participants were not debriefed following the completion
and return of surveys due to the anonymous nature of the data
collection process.
However, they were offered the
opportunity to request a copy of the final study from their
respective home health and hospice agencies.
No incentives
were provided to participants other than the opportunity to
participate in a survey about caregiver stressors that could
lead to agency and/or community support programs and
services for caregivers.
Data Analysis
Data collected were analyzed using the Statistical
Package for the Social Sciences (SPSS) software program.
Demographic analysis of the data showed that 79% of
caregivers in this study were female; 21% were male.
Combining male and female caregivers yielded the modal
score (most frequently occurring score) of 41% in the 51-65
year age range.
In terms of those receiving care, 53% were
females; 47% were male.
The caregivers and recipients’
distributions of gender and age ranges are shown in Figure 1
Figure 1: Caregiver and care recipient age and gender
distributions.
Journal of Student Research (2013)
Volume 2, Issue 1: pp.
36-42
Research Article
ISSN: 2167-1907
www.jofsr.
com
39
Evaluating the physical impacts of the caregiving experience
against the duration of caregiving showed no significant
relationship between the variables, indicating that duration
was not a factor in physical impacts of caregiving in this
study.
However, in testing the emotional impacts against
duration, three variables were found to have significant
relationships: contentment (x
2
= 22.
951, df = 8, p < .003),
fear (x
2
= 16.463, df = 8, p < .036), and guilty (x
2
= 18.909, df
= 8, p < .015).
These results implied that caregivers who
provided care for longer periods of time experienced not only
higher rates of contentment but also higher rates of fear and
guilt.
Measuring frequency against impacts on the physical
wellbeing of the caregiver showed interesting results.
Due to
the design of the question measuring the physical impacts, it
was not possible to collapse the negative and positive effects
into separate composite variables.
Respondents were asked
whether a physical symptom improved or worsened during
caregiving.
Survey participants could also choose “no
change” or “not a concern for me” with each physical
symptom presented thereby rendering responses without
assigning a negative or positive value.
Therefore, the
frequency variable was run against each of the physical
impacts individually.
In terms of the negative physical impacts upon the
caregiver (e.
g., backaches, headaches, fatigue, inadequate
sleep, etc.
), statistically significant results were found at the p
< .05 level for 46 variables between the aforementioned types
of physical symptoms and the types and frequencies of
caregiving provided (e.
g., laundry, dressing, feeding, ostomy
care, etc.
provided: never, 1-3 days, 4-6 days, or every day).
The combination of type and frequency of care with certain
physical symptoms showed overwhelming overlap with
several physical impacts on the caregiver.
Of these 46
significant results, Table 1 shows a representative sampling,
as the inclusion of the entire data set was space prohibitive.
Table 1
Significant cross tabulation results of caregiving duties and physical symptoms experienced
Caregiving performed
Physical impact
x
2
df
p value
Physical Care:
Application of skin preparations
Feeling tired
23.718
9
0.005
Bathing/showering
Endurance/strength
21.205
9
0.012
Feeding
Feeling tired
21.860
9
0.009
Giving nasal sprays
Backache
21.596
9
0.010
Not sleeping enough
20.647
9
0.014
Trouble falling/staying asleep
22.482
9
0.007
Giving breathing treatments
Weight loss
40.320
9
0.000
Incontinence care
Physical strength
21.130
9
0.012
Ostomy care
Sleeping too much
36.331
9
0.000
Transfers
Feeling tired
21.636
9
0.010
Physical strength
20.590
9
0.015
Household/Supportive Care:
Meal preparation
Use of prescription medications
27.551
9
0.001
Shopping/errands
Feeling tired
27.761
9
0.010
Not sleeping enough
33.382
9
0.000
Sleeping too much
25.356
9
0.003
Laundry
Backache
27.622
9
0.001
Eating/nutrition
23.475
9
0.005
Feeling tired
24.232
9
0.004
Housecleaning
Medical condition
22.670
9
0.007
Use of prescription medications
20.600
9
0.015
Banking/bill paying
Ability to concentrate
40.892
9
0.000
Physical strength
28.194
9
0.005
Note: All results were evaluated at the p < .
05 level.
a
n=133.
Journal of Student Research (2013)
Volume 2, Issue 1: pp.
36-42
Research Article
ISSN: 2167-1907
www.jofsr.
com
40
Likewise, the emotional impacts of caregiving showed
statistically significant results, albeit to a lesser extent.
Unlike
the physical impact scale, however, the emotion scale lent
itself to collapsing the negative emotions and positive
emotions into separate composite variables (total negative
emotion variable and total positive emotion variable).
The frequency of caregiving tasks evaluated against the
negative emotion composite variable yielded several
significant relationships, all at the p < .05 level: medications
administered by injection, giving nasal sprays, giving
breathing treatments, incontinence care, mobility, meal
preparation, and yard work/maintenance (Figure 2).
These
results implied that the more frequently these types of care
were provided, the higher the total negative emotion score.
Only one positive emotion variable labeled, “participating in
social engagements”, showed statistical significance when run
against frequency (x
2
= 125.
413, df = 90, p < .008).
The
implication being that the more often caregivers participated
in social engagements with the care recipient, the more
positive emotion they experienced.
Figure 2: Significant correlations between type and frequency of care provided tested against the negative emotion composite
variable.
Discussion
Impressions
The statistical data on caregiver demographics
corresponds with the figures reported at the national level
(NAC & AARP, 2009), although the most frequently reported
caregiver age range for this study, 51-65 years, was slightly
greater than the national average of 48 years.
This
discrepancy may be accounted for by the limited sample size
of the current study compared to the national survey.
Analyses of the care recipient demographics also
differed somewhat from data gathered in the national survey
(NAC & AARP, 2009).
Nationwide, 62% of care recipients
are female, while this survey found that figure to be 53%.
Likewise, the current study had divergent results in terms of
care recipient age, with the most often-reported age bracket
between 76-85 years.
Nationally, the average age is 61 years.
In terms of the relationship between the caregiver and care
recipient, the highest frequency reported was husband (34%),
followed by mother (25%) and wife (14%).
The overall
percentage of individuals caring for a relative was 97%,
which was somewhat above the national rate of 86%.
Likewise, a discrepancy was found between caregivers in this
study providing care for 12 months or more (54%) and the
national survey, which was 65%.
What follows below is a summary of the findings
relevant to the hypotheses posited by the researchers:
The most often reported physical ailments experienced
by caregivers were: arthritis/bone fractures (45%),
followed distantly by allergies (24%), other disorders
(e.g., Crohn’s Disease) (20%), diabetes (18%),
depression (17%) and heart failure/heart disease (17%).
This corroborates the data reported by several studies
(Brewer & Chu, 2008; Evercare & NAC, 2007, 2009;
Houser & Gibson, 2008; NAC & AARP, 2009; Perrig-
Chiello & Hutchison, 2010; Vitaliano & Katon, 2006).
The results of the current study found no relationships
between the positive emotion variables and duration of
care at the less than 6 months or the 6 month to 12 month
time periods.
Only one correlation was found for
contentment/happiness at the duration variable of 12
months or more.
Journal of Student Research (2013)
Volume 2, Issue 1: pp.
36-42
Research Article
ISSN: 2167-1907
www.jofsr.
com
41
The researchers found no significant relationships in this
study between the duration of caregiving and the
physical impacts experienced by the caregiver, thereby
leaving the authors unable to reject the null hypothesis
for this research question.
The duration of caregiving produced three significant
relationships when evaluated against the emotional
impacts of caregiving.
These results supported the
hypothesis that providing informal caregiving for
extended periods of time would have an impact on the
emotional wellbeing of the caregiver, albeit to a lesser
extent than anticipated by the researchers.
Additionally, only one variable measuring positive
emotions was found to be relevant: contentment (p <
.003).
However, two variables assessing negative
emotional impacts yielded statistical significance: fear (p
< .036) and guilt (p < .015).
In terms of the frequency of the caregiving experience
impacting upon the physical and emotional wellbeing of
respondents, results were in alignment with what one
could expect from a physically demanding set of tasks.
For instance, backaches were more often reported by
those individuals who provided assistance to care
recipients in transferring (e.
g., from bed to chair or
wheelchair to toilet).
Similarly, the frequency variable showed significance
when related to the negative emotion composite variable.
The results of these analyses support the hypothesis
posited by the authors that caregivers who provide high
invasive/high intimate intimacy types of care (e.
g.
bathing/showering, incontinence and ostomy care) would
experience emotional impacts.
The same may be said of the positive emotion composite
variable of participating in social engagements, which,
when provided more frequently to the care recipient,
would have an uplifting impact upon the caregiver.
This
result lends support to the researchers’ hypothesis that
those engaging in low invasive/low intimacy types of
caregiving would experience satisfaction.
Limitations of study
The researchers assumed that caregivers might report
both negative and positive impacts on their physical and/or
emotional wellbeing, with variation in individual experiences.
Some caregivers may have failed to respond due to the
overwhelming nature of the caregiving they were providing
during the period of data collection.
This potential exclusion
of individuals may have limited response rates from
caregivers with higher frequency, longer duration, or higher
levels of intimate/invasive of caregiving.
While it is feasible
that the majority of participants experienced no physical and
minimal emotional impacts from the caregiving experience, it
may be more likely that the relatively low response rate
influenced the results or the survey design itself was lacking
in the capacity to measure such relationships.
Other
limitations of the study included the lack of a large-print
version for low-vision caregivers and the physical health of
the caregiver (e.
g., severe arthritis may have been an
impediment to completing a written survey).
The length of the survey instrument may have deterred
some caregivers from participating.
While it took
approximately 15 minutes to complete, the number of pages
(nine) may have dissuaded some prospective respondents.
Still other potential participants may have been overwhelmed
with the performance of caregiving duties, professional and
personal obligations, which left inadequate time or interest in
responding to the survey.
Health Insurance Portability and Accountability Act
(HIPAA) concerns and time limitations of Institutional
Review Boards (IRB) raised by some of the solicited agencies
also limited this study.
In other cases, workload of agency
employees available to address and mail envelopes may have
prevented collaboration.
Although the survey packets were
collated and placed in an outer envelope with sufficient
postage, the collaborating agencies and hospitals needed to
address the envelopes for mailing.
The researchers recognize
that this limitation could not be remedied without
compromising the anonymous nature of the study design and
requesting patient census mailing lists to mail packets on their
own.
The homogenous population of rural Pennsylvania may
have further limited this study.
Also, because the researchers
relied upon a non-probabilistic convenience sample rather
than a random sample, the generalizability of any findings
was limited.
A correction of this limitation would be to
randomly survey family caregivers in urban portions of
Pennsylvania and other states.
Further limiting this study was the low response rate and
in many cases, the volume of missing data in several of the
questions.
Both of these factors decreased the confidence
level of statistical analyses.
Implications
Through the course of this research, the authors learned
the value of a thoroughly vetted survey instrument.
While the
questionnaire developed by the researchers was critically
reviewed by approximately 15 individuals and went through
numerous iterations, it nonetheless presented participants with
a few challenges in terms of responding to all of the
questions.
Refinement of the instrument would, ideally,
reduce the amount of missing data and increase confidence
levels of the data and the inferential statistics.
It also became evident that future instructions to
participating agencies should be clarified to read informal,
unpaid caregivers are being recruited.
In one instance, survey
packets were inadvertently sent to private-duty caregivers
engaged in professional caregiving.
None of these surveys
were used in the tabulation of results.
Also, information
should be added to the Participant Letter explicating two
issues: a) if the residence to which the mailing was sent does
not include a caregiver, please disregard the mailing and
discard the survey; b) if the mailing was inadvertently sent to
a care recipient, it should be passed along to the individual’s
caregiver.
The research could also be refined by narrowing the
population of caregivers to those who had cared for hospice
patients during a specified period of time.
This would serve
two purposes: providing a clearer pool of respondents and
cost containment of the project.
The researchers also learned the value of planning
adequate time to allow for the IRB processes of individual
agencies being solicited for participation in the study.
The overall results of this study lend support to the data
published by the NAC and AARP (2009).
Although the
sample size of this project was small, the conclusions that
may be drawn are nonetheless compelling.
Journal of Student Research (2013)
Volume 2, Issue 1: pp.
36-42
Research Article
ISSN: 2167-1907
www.jofsr.
com
42
Directions for future research may include further
inquiry into the burden of caregiving specifically in terms of
high invasive/high intimacy versus low invasive/low intimacy
types of caregiving.
Additionally, it would be intriguing to
examine in depth the disparity of negative emotions reported
between female and male caregivers.
Although data was
collected on acute and chronic disease comorbidities for both
the caregiver and the care recipient, the researchers found it
necessary to limit the scope of the project.
Thus, it would be
interesting to explore this aspect of the caregiving experience
further.
This type of research can be used to drive legislative
action that would better fund care of the elderly and those
with disabilities.
More importantly, it provides concrete
evidence to support legislation that would fund the millions of
informal caregivers across America.
References
Brewer, L.
, & Chu, D.
(2008).
Caregivers at risk: The
implications of health disparities.
Journal of Loss
and
Trauma,
13,
205–221.
doi:
10.1080/15325020701769246
Ekwall, A.
K., & Hallberg, I.
R. (2007).
The association
between caregiving satisfaction, difficulties and
coping among older family caregivers.
Journal of
Clinical Nursing, 16, 832-844.
doi: 10.
1111/j.
1365-
2702.2006.
01382.
x
Evercare by UnitedHealthcare, & the National Alliance on
Caregiving (NAC).
(2009, April 28).
The
Evercare® survey of the economic downturn and its
impact on family caregiving.
Minnetonka, MN:
Author.
Evercare (in collaboration with the National Alliance for
Caregiving [NAC]).
(2007, November).
Evercare®
study of family caregivers – what they spend, what
they sacrifice; The personal financial toll of caring
for a loved one.
Minnetonka, MN: Author.
Houser, A.
, & Gibson, M.
J. (2008).
Valuing the invaluable:
The economic value of family caregiving (2008
Update).
Washington, DC: AARP Public Policy
Institute.
Hunt, C.
K. (2003).
Concepts in caregiver research.
Journal
of Nursing Scholarship, 35(1), 27-32.
Institute of Medicine.
(2008).
Retooling for an aging
America: Building the health care workforce (Free
Executive Summary).
Washington, DC: The
National Academies Press.
Jordan, C.
, & Cory, D.
(2010).
Boomers, boomerangs, and
bedpans.
National Social Science Journal, 34(1), p.
79-84.
Marywood University, Institutional Review Board.
(2011).
Protecting human research participants.
Retrieved
from http://www.
marywood.
edu/irb/
Monin, J.
K., & Schultz, R.
(2010).
The effects of suffering
in chronically ill older adults on the health and
wellbeing of family members involved in their care:
The role of emotion-related processes, GeroPsych,
23(4), 207-213.
doi: 10.
1024/1662-9647/a000024
National Alliance for Caregiving (in collaboration with
AARP).
(2009).
Caregiving in the U.
S. (Executive
Summary).
Bethesda, MD: Author.
National Association of Social Workers.
(1996, revised 2008).
NASW code of ethics.
Retrieved
from
http://www.
socialworkers.
org/pubs/code/code.
asp
National Institutes of Health, Office of Human Subjects
Research’s Protection of Human Subjects
Regulation, 45 C.
F.R. 46 (2005).
Retrieved from
http://ohsr.
od.nih.
gov/guidelines/45cfr46.
html#top
Perrig-Chiello, P.
, & Hutchison, S.
(2010).
Family caregivers
of elderly persons; A differential perspective on
stressors, resources, and well-being.
GeroPsych,
23(4), 195–206. doi: 10.
1024/1662-9647/a000025
Ugwu, L.
(2010).
Employed “Sandwich” Generation women:
Coping with work/family conflicts.
European
Journal of Social Sciences, 15(3), p.
396-410.
Vitaliano, P.
P., & Katon, W.
J. (2006).
Effects of stress
family caregivers: Recognition and management.
Psychiatric
Times,
13(7),
24-28.