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Nursing Research: Improving care for people with chronic conditions

Posted: Sept. 22, 2014

The illustration of asthma, diabetes, and heart disease that appeared in the Fall 2014 issue of Longhorn Nursing magazine.

Longhorn Nursing: The article below appeared in the Fall 2014 issue of Longhorn Nursing magazine.

Asthma, diabetes, heart disease — the list of chronic diseases affecting almost 50 percent of Americans is a long one. These disabling conditions have profound and pervasive effects on the lives of millions of individuals. Seven out of 10 deaths in the United States each year result from chronic disease, and almost one out of two adults have at least one chronic illness.

The conditions are among the most common, costly and preventable of all health problems in the nation. Promoting a healthy public requires solid data on therapy and interventions. Without such evidence, informed changes would be difficult, if not impossible.

At The University of Texas at Austin School of Nursing, faculty researchers are working to enhance better understanding of chronic illness. In addition to easing symptoms, these interventions provide coping strategies so that individuals can live the best they can for as long as they can. Some of these projects promote health or help manage disease. Others are family- or community- based initiatives linked to the needs of high-risk and underserved populations. All of them are making lives better.

Creating a culturally relevant approach to diabetes management

He was a long-distance truck driver who wasn’t often home. He said he didn’t feel that sick, but his wife persuaded him to take a blood test anyway.

Sharon Brown, PhD, RN, FAAN,

“His A1C (a form of hemoglobin that is measured to identify the average blood sugar over prolonged periods of time) level was off the charts,” said Sharon Brown, PhD, RN, FAAN, professor. “I thought it was a mistake and had it rerun. It wasn’t. In persons with diabetes, the A1C goal is 7 or less; his was 18.”

For more than 20 years, Dr. Brown has conducted a series of community-based intervention studies along the Texas-Mexico border to improve diabetes self- management among Mexican Americans. The His- panic population is the fastest growing segment in the United States and has one of the highest rates of diabetes. When she began, there was nothing in the literature about what such an intervention would need to look like in order to succeed, and, despite the fact that 95 percent of those living near the border speak mostly Spanish, nothing was being done in that language.

Her interventions have resulted in clinically significant improvements in A1C levels among the participants. Furthermore, they show that culturally tailored diabetes interventions are effective in improving the health of underserved groups who bear a disproportional burden of type 2 diabetes and that these interventions are cost-effective.

Dr. Brown and her colleagues from the community who provide the interventions — nurses and dieticians — address environmental factors, many of which are modifiable, that have been implicated as contributors to developing diabetes, not only in Mexican Americans, but across all racial/ethnic groups. These include sedentary lifestyles, low socioeconomic status, barriers to accessing health care, poor diet, and low health literacy about health issues and use of health care systems.

They then talk to participants about the relation- ship between weight and diabetes and how making subtle changes to their diet can reverse the effects of the disease. For example, because participants didn’t like the idea of weighing foods to measure the amount they ate, Dr. Brown suggested they visualize the palm of their hand as an appropriate portion size.

Social support is key to the intervention’s success. “We talked about their favorite dishes and suggested ways to make healthier substitutions,” she said. “Several times we would prepare a nutritious low-fat meal or snack, then meet resistance until one participant began to challenge the others to try it, and they’d all find out they liked it. But it took the peer pressure to get them to take the first bite.”

A year after beginning the intervention, the truck driver’s A1C level had decreased to 8 — still higher than the goal of 7, but since each point decrease reduces diabetic complications by 25 to 75 percent, he was feeling much better. Thanks to a culturally relevant program he can live with and the support of friends and family, he can keep on trucking.

Taking time to understand aging in people with disabilities

Tracie Harrison, PhD, RN, CS, FNP,
FAAN, associate professor

“Over time, something that may seem medically stable as far as physical function can change in drastic ways how people live their lives,” said Tracie Harrison, PhD, RN, CS, FNP, FAAN, associate professor, whose research focuses on the effects of aging in people with disabilities. “People can feel more or less disabled depending on what society asks of them.”

For instance, when a woman with a functional limitation in her hand is working at a job that requires detailed hand movement, she may feel disabled due to the high levels of pain experienced in her hand when she performs her job, which can lead to high rates of errors and possibly poor work appraisals. If she is given an appropriate accommodation or retrained to perform a job that does not require detailed hand movements, she may be able to work past retirement age. Her feelings and experience of being disabled can be eliminated, and she may remain a very productive member of society.

The way in which women respond to their functional limitations and the types of accommodations available to them can vary, depending upon societal expectations. This is why Dr. Harrison has taken considerable effort to understand reasons for disparities in outcomes for women with disabilities depending upon their culture and ethnic background. For instance, she has spent the last five years examining how older Mexican-American women view disability, and three of her students have examined outcomes for African Americans.

“Having a chronic illness or disability doesn’t mean you can’t reach a higher level of health or that you have to see yourself in a negative state. Many people can live a full life in spite of their limitations,” Dr. Harrison explained. In her current project, she conducts a series of interviews with older women with disabilities, looking for biological stress markers in those who push them- selves and indicators of accelerated aging to explain what they are perceiving about their situation. She is working to help women regulate stress levels and activities and select the most appropriate accommodations so they can do what they want within their expectations for aging and the norms of their cultural group.

One participant, an older woman who had childhood polio and as an adult developed severe scoliosis, is able to move only a thumb and socializes mainly by computer. Although she might be more comfortable in an independent living center, she refuses to leave her house. After a few visits, Dr. Harrison found out why: Her daughter had passed away in the family home, and the mother still “sees” her in the rooms.

“We may think we know what’s best for someone, but until we know their story, we can’t understand why they feel the way they do,” said Dr. Harrison. “How they adapt to changing situations can affect their long-term health. We have to support their needs, and often that means coming to assist them in their communities.

Helping children with asthma breathe easier

Asthma affects nearly 6.5 million children in the United States and is the leading cause of childhood disability. It is also costly for families in terms of trips to the emergency room, missed class time and work, lost wages, and even premature death.

Left to Right: Eileen Kintner, PhD, RN, FAAN, associate professor, and
Sharon Horner, PhD, RN, FAAN, professor

“Although asthma affects the child, the work to manage the dis- ease can make an impact on the entire family and in schools and other community settings,” said Sharon Horner, PhD, RN, FAAN, professor, who has studied the condition in rural school-aged children for more than 20 years.

Through Dr. Horner’s community- and school-based pro- gram, children learn how to accept their condition, manage symptoms, use appropriate medication and reduce environ- mental risk factors. Her colleague Eileen Kintner, PhD, RN, FAAN, associate professor also works with children with asthma, although in school settings in underserved urban areas. Her program has children describe what it’s like to live with asthma through assignments that have them draw, read or write about the condition.

“In the beginning, many of the children write that they can’t do things that other kids do,” said Kintner. “We teach them that they have a choice about how they want to manage their asthma. When they accept their asthma, we find that they are able to set their own
personal goals for controlling it.”
This acceptance also helps improve confidence. In
Dr. Horner’s most recent study of 10- to 13-year-old children, she had them identify lifestyle (diet, physical activity) and asthma self-management behaviors they were willing to work on by making incremental changes. After 12 weeks, the kids were pleased that they had accomplished the tasks and experienced good outcomes.

“One parent said her child couldn’t set goals, but once he began to work on it, he found he liked set- ting goals,” said Dr. Horner. “When school started, he performed better in class and even tried out for the football team.”

Both researchers found that by improving asthma self-management skills and reducing symptoms, the children didn’t need to access health care services as frequently and missed school less often. Fewer hospitalizations and school absences benefit the children, their families and schools, Dr. Horner said. She also stressed that any changes made or goals set should be sustainable.

“It’s important for anyone wanting to change health behaviors to ensure that the changes are something they can live with.”

Improving the health of underserved populations through self-care strategies

Miyong Kim, PhD, RN, FAAN,

Bridging racial, cultural and financial divides is key to providing health care in an equitable way to all Americans, according to Miyong Kim, PhD, RN, FAAN, professor. Her work over the years in community-based participatory research (CBPR) using self-care strategies has significantly improved the health of underserved populations, particularly minority groups.

“We know that self-care makes immediate improvements in people with chronic illnesses such as hypertension and cardiovascular diseases,” she said. “In order to maximize the success of self- care strategies, nurse researchers and educators need to translate such evidence-based interventions into a context that people, who may be linguistically isolated or are experiencing other cultural barriers, can understand and implement.”

Toward that end, Dr. Kim is developing a graduate-level class in which students will use a CBPR approach to participate in projects alongside other health care providers and community organizations. By employing the strengths of each discipline, inter-professional teams will focus on chronic disease management, particularly in underserved populations.

Dr. Kim is also exploring how technology can help reduce the health disparity gap. Having to use a computer to go online and make choices mandated by the Affordable Care Act and Medicare Part D, she explained, puts many minorities at a disadvantage. To make it more accessible, she envisions tapping into the computer gaming industry to develop language-appropriate applications and create computer games to promote health literacy.

“Socioeconomic factors and the amount of education people have play a big part in how long — and how well — they live,” she said. “In the future, nurses will align with other disciplines such as social work, pharmacy and medicine to develop solutions that will ensure that people can better understand how to access the care they need.”

All of these efforts may one day come under the umbrella of the Center for Trans-Disciplinary Collaborative Research in Self-Management Science, a national model Dr. Kim hopes to establish. The center will join professors and students who are already engaged in health and science research with outside industry to collaborate on developing a better health care delivery system.

“I’m a matchmaker of unlikely partners, a catalyst of cooperation,” Dr. Kim said, “Because solving the complicated problems we face in order to make people’s lives better will require greater collaboration and partnership.”

Repairing cognitive impairment in individuals with multiple sclerosis

Alexa Stuifbergen, PhD, RN, FAAN, dean of the School of Nursing and longtime principal co-investigator Heather Becker, PhD, research scientist, recently launched a multi-site intervention focusing on helping to improve impaired cognitive function in individuals with multiple sclerosis (MS), a chronic and often disabling neurological disease.

“Over the past 25 years, our research has focused on factors that could help individuals with MS promote their quality of life,” Dean Stuifbergen said. “We have recently found that cognitive impairment is shaping up to be one of the most disabling symptoms and yet it has received little attention. There are virtually no interventions to help people manage cognitive problems.”

Left to Right: Heather Becker, PhD, research scientist, and
Alexa Stuifbergen, PhD, RN, FAAN, dean of the School of Nursing

The team’s previous research showed how important exercise can be in delaying the onset of symptoms and improving the physical, mental and social health of those living with MS. But surprisingly, when participants were asked about their perceptions of memory problems and cognitive issues, a majority expressed concerns. The research duo also found that cognitive symptoms are among the most disabling effects of the disease, and that aspects of cognition — attention, information processing speed, new learning and memory, and executive functioning — may affect 50 to 75 percent of those with MS.

The team developed an intervention based
on the best cognitive rehabilitation options
for other conditions, but tailored to the needs
and experiences of persons with MS. The
intervention “Memory, Attention and Problem
Solving Skills for Persons with MS” includes
learning compensatory strategies such as
environmental modifications or behavioral
strategies to help individuals adapt in everyday
life; focusing on aspects of lifestyle such as
exercise, sleep, and anxiety reduction that
impact cognitive function; and brain retraining
using home-based computer activities to practice skills to improve memory, attention, and problem solving.

Dr. Becker described how one participant, a real estate agent, wasn’t able to remember the telephone numbers on the “For Sale” signs she saw as she drove around town. “Through the cognitive abilities classes, she has learned how to remember numbers long enough to find a parking spot and record them,” Dr. Becker said. “Enhancing this skill was important to her, because it is so integral to her ability to function on the job.”

The group activities and the individual home computer-based programs complement each other, Dean Stuifbergen explained.
“Maintaining attention is a major problem. In the group, the participants can learn from one another what strategy works for them, which is then supported by the new skills they learn on the computer,” she said. “We think the group meetings and computer training are synergistic.”

Dean Stuifbergen and Dr. Becker also maintain a longitudinal study, now in its 18th year, to detail changes in health status over time in a large sample of persons with MS.

  • Dr. Brown, Principal Investigator, Meta-Analysis of Bio-Behavioral Determinants of Health Outcomes in Type 2 Diabetes, funded by the National Institutes of Health (NIH), National Institute of Nursing Research (NINR), $1.3 million
  • Dr. Harrison, Principal Investigator, Health Disparities Among Mexican American Women with Disabilities, funded by the NIH, NINR, $1.3 million
  • Dr. Horner, Principal Investigator, Enhancing Children’s and Parents’ Asthma Management, funded by the NIH, NINR and National Heart Lung and Blood Institute (NHLBI), $1.6 million
  • Dr. Kim, Principal Investigator, Community-Based Diabetes Care for Korean American Immigrants, funded by the NIH, National Institute of Diabetes and Digestive and Kidney Diseases, $2.3 million
  • Dr. Kintner, Principal Investigator, Comparison of Asthma Programs for Schools and Staying Healthy-Asthma Responsible & PreparedTM (SHARPTM), funded by the NIH, NINR, NHLBI, National Institute of Child Health and Human Development, and National Institute of Allergy and Infectious Diseases, $1.9 million
  • Dean Stuifbergen, Dr. Becker, Co-Principal Investigators, Memory, Attention, and Problem-Solving Skills for Persons with MS, funded by the NIH, NINR, $2.2 million