By
Hilary Gibson, Staff Writer
Caregivers in the United States currently number close to 54
million, with this figure expected to climb even higher because
of the 75 million aging baby-boomers. The odds are in favor of
almost every person (at some point in their lifetime) becoming a
caregiver for a spouse, an elderly parent, or for a child or
grandchild. What once seemed to be an exclusive club is quickly
filling-up with more and more caregivers as its constituents.
The situations that place people into the role as caregiver
transcend all socio-economic levels, age, race, religion, and
workplace status. Since caregiving can be such a daunting task,
every shred of help, information and education obtained can make
a big difference in how a person goes about taking on this role.
It’s much easier to cope with the demands of caregiving if the
family is living in an urban or suburban area. The obvious
reason being easier access to different agencies, organizations,
and outreach programs, not to mention available forms of
transportation. But imagine all the caregiver responsibilities
and stresses compounded by issues of time and distance - this is
what the rural caregiver must face - along with feeling alone,
forgotten, and ignored.
Rural caregivers have special needs, concerns and
barriers that their urban and suburban counterparts do not have to
consider. Challenges such as isolation, transportation, separation
from extended family and the standard of living are just a few of
the issues that a rural caregiver must face, along with the already
challenging task of caring for a loved one. More importantly, how
does a rural caregiver receive proper training and education to be
able to tend to their loved one’s needs? Agencies and outreach
programs don’t exist around the corner, or even down the block, but
are instead miles away from where the rural caregiver can access
them easily or quickly. In order for the rural caregiver to attend
any type of training or education on how to care for a loved one,
they must embark on what will be a major undertaking. First, they
must find some sort of respite care to come in to their home, in
order to watch their loved one while they are away receiving
caregiven support, training and education. Second, they must find
reliable transportation that will take them to a training facility.
What if the distance is great enough that the rural caregiver must
spend an entire day, even over night, away from their loved one? Who
is qualified to watch their loved one for an extended period of
time? What will all this cost and where will the money come from?
There are so many more complex components thrown in to rural
caregiving that it’s exhausting just thinking about them. What can a
rural caregiver do? What are some of the solutions for distance,
time, and isolation?
Very few studies have been done specifically
about the plight of the rural caregiver and the effect that
caregiving has had on them. However, the studies that have been done
to date, show a pattern of similar qualities and responses among
rural caregivers. It isn’t too surprising that one of the
similarities noted most, are the ones shared with the rest of family
caregivers. The majority of rural caregivers are women who are
daughters, daughters-in-law or spouses between the ages of 40 and
70. Common effects of caregiving on this group include feelings of
burden, strain, role fatigue, role overload, stress and perceived
stress. The issue of isolation plays an even greater role in the
psyche of the rural caregiver, leading to feelings of fatigue,
anxiety, depression, anger, guilt, frustration, and financial
concerns, all usually stemming from a lack of social support.
Virginia Tech’s Center for Gerontology Research
conducted a study in 2000 of approximately 200 caregivers of older
adults living in rural areas in southwest Virginia. While it’s a
recognized fact that caregiving isn’t restricted to just those who
care only for the elderly, this study is one that clearly shows the
needs, frustrations, and experiences that all rural caregivers go
through, no matter the age, disability or circumstance of the person
for whom they care. One of the more interesting facts that the study
uncovered was something specific only to rural caregivers. Young
people tend to move away from rural areas for education
opportunities or for better employment, leaving the rural community
with fewer and fewer potential, future caregivers. Their urban and
suburban caregiving counterparts don’t really have to concern
themselves with this happening, since major migration away from
heavier, populated areas rarely occurs.
Distance and isolation are a continual theme
among rural caregivers, posing a significant problem for them to
receive proper preparation for their role as caregiver. In rural
areas, caregivers have the least amount of access to outreach
programs and community services than any other caregiver group. This
is why certain investigations, such as the nursing-intervention
study, Home Care Training for Family Caregivers of Rural Elders,
conducted by principal investigator Mary Ann Rosswurm, EdD, RN, CS,
FAAN and co-investigator, June H. Larrabee, PhD, RN are so
important. Perhaps the findings of such studies will compel local,
state, and federal government to find ways to begin easing the
burden placed upon the shoulders of rural caregivers. By conducting
small, in-home training sessions and groups for rural caregivers,
either through video teleconferencing or onsite instruction,
significantly positive changes occurred. According to the findings,
these training sessions made rural caregivers more aware of their
own resourcefulness, plus gave them new ideas and knowledge, helping
them to feel more competent about their capabilities as a
caregiver. It didn’t seem to matter if the caregiver received
needed information through in-home, onsite instruction, or through
video teleconferencing, because there was not a significant
difference in outcome for either group. The main issue was that the
rural caregivers received information and education that not only
helped them to feel better about themselves, but improved their
quality of life as well.
Other studies have been done
primarily in Canada, since there is still so much rural area
throughout the country. While these studies are helpful in knowing
certain outcomes, the changes in policy that may come about
unfortunately are not yet being instituted in our own country. Quite
recently, Canada added rural palliative care programs to their
formal health care system, enabling people in rural areas with
terminal illness to receive proper pain management. Although this
program has been developed with the best of intentions, there are
some serious drawbacks to it, including the long distances involved
with caring for a patient, weather adversities and severities, and
difficulty in finding the resources needed in a rural area to
properly support a patient and the family caregivers. The main goal
of this program, as with any rural health care program, is to keep
the patient in their familiar environment for as long as possible.
In general, when it comes to
rural healthcare and remembering the caregiver, it has been just
“assumed” since there is a strong feeling of “family” among the
rural people, there will always be someone to take care of a person
in need, as well as provide respite care for the caregiver. Today,
most families have one or two relatives, at-the-most, who live close
enough to help with the caregiving, proving that what is really
known about the rural caregiver is nothing more than something
between myth and wishful thinking. Most policy-makers think that the
cost of living in a rural area is low, but they forget about hidden
costs such as transportation. While rural areas are thought of as
beautiful and idyllic places to reside, the fact of isolation and
the lack of public transportation, plus limited resources make this
a less-than-perfect place if you are in need of respite or medical
attention.
Providing free training sessions at the nearest church or school,
along with free respite care and transportation would be a great
first-step to improving the life of a rural caregiver. Make no
mistake about it, though… rural caregivers don’t spend their time
feeling sorry for themselves. They are of hardy stalk, and have a
true independent spirit, which makes it difficult for them to feel
comfortable asking for the help and assistance they need and
deserve. All the more reason why we should be taking care of what
has always been thought to be the
“backbone” of this country. Shame on us all if they are to remain
invisible and forgotten in a “shadowland.”
Rural Assistance Strategies
-
rural caregivers need social and emotional support
-
needs assessments for caregivers must be done and
encouraged
-
providing financial assistance for health care expenses
-
encourage and promote supportive work
environments (flex time)
-
understand that family support and help is not always
available for caregivers
-
create rural caregiver support groups
-
improve access to community services
-
improve visibility of community service providers
-
make funding available for support services and
institutional care
-
tend to the health needs of the caregiver
-
recognize caregiving as work and provide financial
compensation
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