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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