Au speaks cyber caring article

By Kathy Jo Ellison and Emily Myers

Caring forCaregivers

How Technology-Enhanced Education Has Provided Support for Rural Caregivers of the Elderly “Will You Still Need Me, Will You Still Feed Me, When I’m 64?”

– Lennon & McCartney, 1967

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he lyrics from this Beatles song were just as big a part of the Baby Boomer generation as the motto, “Trust no one over 30.” These quotes are emblematic of a generation that questioned anyone over a certain age despite the vague awareness of his or her own aging process. Who knew that the day that so many from this generation would be 65 years old would come so soon? This “silver” tsunami includes those who began turning 65 in 2011, now numbering 79 million in the US over the next 17 years, those baby boomers born between 1946 and1964 will celebrate their 65th birthday at the rate of 10,000 persons per day (Pruchno, 2012).

The total population in Alabama over the age of 65 is 640,300 (Kaiser Family Foundation, 2012).

Between 2000 and 2025, the rural elderly population in Alabama is expected to increase by more than 82% (Alabama State Data Center, 2010).

The overwhelming growth of the aging population will result in a huge increase in the number of chronically ill persons requiring care, with over one-third of these elders having cognitive and functional limitations of one kind or another. For those over the age of 85, the fastest growing subset of elders, the figure rises to two-thirds. These physical and cognitive limitations restrict a person’s ability to perform daily activities, such as getting out of bed, getting dressed, going to the bathroom, eating, going grocery shopping, and driving. In rural Alabama, health issues such as diabetes, heart disease, cancer, stroke and dementia affect up to 40% of the population. Healthcare systems in rural Alabama are negatively impacted by the rise in the number of elderly and must address critical issues such as a shortage of physicians, primary care nurses, mental health professionals, inadequate

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emergency services, limited insurance coverage, high poverty levels, a high incidence of alcohol and tobacco use, and major transportation difficulties. These issues present significant challenges for the growing number of family caregivers needed to provide informal care for their chronically ill, disabled, or aged family members in the home as well (Wegerer, 2013).

A total of 65.7 million Americans, or 28.5% of the current population, serve as informal caregivers. An informal caregiver is a person that provides unpaid assistance to someone with chronic illnesses so that they may carry out daily activities (National Alliance for Caregiving, 2009). Of these 182 caregivers, 43.5 million, or 19%, are responsible for an older adult (age 50 plus). The average caregiver, of whom more than two-thirds are women, is 50 years old and on average provides 19 hours of unpaid care per week, equivalent to a half time job.

This “job� lasts approximately four years (Gross, 2011). The team has collaborated with area social service professionals and churches to develop and implement educational/support interventions that address the concerns of caregivers and reduce their burden. For those caregivers who are homebound, technology has become a logical and efficient means of providing psychosocial support.

A total of 65.7 million informal caregivers provide unpaid assistance to someone with chronic illnesses so that they may carry out daily activities.

Caregiving and the Internet In a 2011 Alabama statewide needs assessment of elderly women, Auburn professors Brown and Hale found that there are many elderly persons in rural Alabama who are at a disadvantage due to the digital divide (Brown & Hale, 2011). Although increases continue in home internet access and in electronic access through hand-held computers and smart phones, the digital divide persists because of disparities in opportunities and skills to benefit from digital resources (Hale & McNeal, 2011). The elderly as a whole and rural households lack viable access to computers and internet service and experience additional barriers including the affordability of equipment, a lack of confidence

in learning new technology, and/or a lack of understanding of the benefits of computers and online resources (Gatto and Tak, 2008; Laguna, 2008; Rosenthal, 2008). In order to address concerns resulting from the digital divide, the use of technological support must be individualized, multidimensional, user friendly, and not necessarily tied to the Internet.

The National Alliance for Caregiving Report (2009) regarding caregiver burden indicates that only 25% of caregivers use the Internet to help with their burden, while 36% of caregivers turn to health or caregiving providers and 22% use governmental or private organizations or agencies; the remainder use family, books or other resources. The negative effects of caregiver stress and long-term caregiving have been studied extensively, providing evidence of a need for more effective evidence-based programs to improve caregiver outcomes. Caring for people with dementia is the most challenging and most frequently studied area of caregiving, but many of the issues that arise in caring for this population apply broadly to other patient groups.

Caregiver stress is best described as a multidimensional problem (Aneshensel, et al., 1995; Pearlin, et al., 1990). Well-being results from the dynamic interplay of multiple stressors and the resources that are available to mediate them.

The stressors or risk factors that are present vary considerably over time and from one caregiver to the next. It may be that multidimensional interventions are more effective than one-dimensional programs because they are more likely to touch on a particular caregiver’s problems. The most successful interventions address multiple stressors and other risk factors that affect caregivers’ health and well-being (Gallagher-Thompson & Coon, 2007; Gitlin et al., 2006; Pinquart & Sorensen, 2006; Teri et al., 2003). Zarit (2008) suggests that there

are four overlapping characteristics of effective interventions: a psychological rather than purely educational approach, multidimensionality, flexibility, and sufficiency. Over time, the Auburn team tailored its interventions to reflect these data, paying attention to those who represent the less technologically advanced side of the digital divide. We utilized iPads with caregiving resources available on them to assist caregivers in their day-to-day lives without them having to learn new technology. The team looked at improvements in caregivers’ stress/

burden and positive responses to the interventions as primary indicators of program success.

Development of the Technology Intervention The program “Healthy Families Healthy Communities: Caring for Caregivers” was the first effort by the team and was funded as a 3-year program aimed at improving the quality of life of caregivers and care receivers throughout the state of Alabama. Caregiver training courses were provided in nine regions covering 67 counties across the state. A team of Regional Extension Agents, County Extension Coordinators, and Extension Specialists planned and implemented the 2-3 day, 12-15 hour training sessions. The caregiving team as well as extension professionals and other allied health practitioners developed the curriculum to guide the implementation and evaluation of the program. The curriculum covered the most common concerns in caregiving, such as caregiver role, communication, nutrition, body mechanics, personal care, health-monitoring skills, stress and time management, financial concerns, and home modification/adaptation. In order to enhance the take-home lessons, presentation slides and handouts were developed to accompany the classes and curriculum manual. Additionally, video and satellite

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technology as well as local experts and service providers in each region helped teach the lessons and provided additional ongoing support.

During the three year implementation period, over 1,550 people participated in the program (780 being caregivers) and 339 completed pre and post evaluations of caregiver knowledge, skills, reactions to caregiving, and quality of life. The program was a step in the right direction, providing localized caregiver workshops to deliver basic caregiver education to the caregiver population. Knowledge, skills, and quality of life improved in all groups of caregivers, increasing through three months and leveling out at six months. Caregiver personal 184 health was the only measure that began to show decline. Although consistent with the caregiving literature, these findings indicated further measures were needed to address the problem. In addition, the most vulnerable caregivers—those homebound with their loved one—had limited abilities to attend parts or any of the program. In order to better serve caregivers and to improve outcomes, the caregiver’s specific needs for knowledge, skill building, and support had to be further integrated into delivery of the programming.

The team decided to transfer the caregiving curriculum into an iPad application as a next step in the development of the caregiving support

model. The application was based on the Alabama Caregiver curriculum used in the workshops and contained video presentations, written handbook material, handouts from local resources, and other supporting documents. The videos were the size of the iPad screen, and the written materials could be resized to enhance reading. The program was resident on the iPad—it was fully contained on the device, not needing an internet connection, and could be viewed in small segments based on the individual needs of the caregiver. The iPad program was piloted in three rural counties in the state. The team worked with a variety of local churches and home health providers. Clients were identified through these agencies, which placed the iPad in the home of the caregiver for up to one week. The caregiver viewed the relevant program materials and then completed an evaluation. Program personnel picked up and returned the devices afterwards.

Over 85 individuals utilized the program with 48 participating in the evaluation. The iPad program increased the rural caregivers’ access to supportive resources and was evaluated as an effective method of providing information and skill building to caregivers who could not make it to a workshop. Caregivers reported a moderate to great deal of improvement in their caregiving knowledge

and skill areas covered in the program. Use of the iPad was evaluated very favorably even by elderly caregivers, with the exception of some difficulties in sound and printing. Focus group members liked the ability to read and listen to information at their own pace and look at just what interested them.

Some felt hesitant to start using the iPad but really liked it with only a brief amount of coaching. The iPad printing features required too many steps for the elderly caregivers and were not rated as helpful.

Future Efforts Preliminary results support the increased development and use of mobile, instructional, or learning technology to improve access to education and support for vulnerable rural caregivers.

Further mechanisms for ongoing support need to be provided for the more tech-savvy baby boomers of the digital divide entering the caregiving arena. According to Gopalan & Brannon (2006), caregivers are the future of the long-term system of providing care to the aging community. The level of involvement by the caregiver and their knowledge of disease management will directly impact the care recipients’ health outcome (Bevan & Pecchioni, 2008). These caregivers need resource development designed to help them address the multiple ongoing clinical, functional, and social

issues of their care recipient as well as maintain their well-being. The opportunities for further development of mobile resources for this population are unlimited. The caregiver and other family and friends who provide care to the care recipient will have mobile access as well as the convenience of viewing the resources without the time constraints of attending appointments or educational sessions. As new challenges arise, caregivers will be able to easily access help to address them.

What better way to help our vulnerable caregiver population than by giving them access to needed materials through a mobile device when it is most convenient for them?

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An Auburn University caregiver support team, comprised of nursing, social work, and nutrition faculty, along with Extension Specialists and Regional Extension Agents, have been working on an iPad application for a caregiving curriculum which addresses the primary issues that affect caregivers in rural areas. Pictured above are Kathy Jo Ellison (left) and Emily Myers (right).