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Choosing Paths to the Future to Improve Cancer Care

Given, Barbara A. PhD, RN, FAAN

doi: 10.1097/NCC.0b013e3181ea73c1
DEPARTMENT: Living Legacy
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Developing Plans to Make a Difference

Early in my career, I reflected on how to make a difference. I asked myself: What path should I follow to achieve maximum professional accomplishments? How do I leave scientific contributions of value for others to build on? Will my contributions make enough of a difference to students, to patients, and to family caregivers? What will make the difference? As I reflect back on my career, I now ask myself, did I make contributions to science? For me, that career path began with a diploma program, then a BSN-completion program, followed by a master's degree, a PhD, and ultimately to becoming a university distinguished professor. My questions to myself guided my educational achievements and my path from rural Ohio, following important and logical steps to create the foundation for my research career.

Although my first academic position was not in a traditional academic medical center, we were certain we could do research without a university hospital-we wanted the community to be the center for our work, consistent with my rural background. I understood the community more than traditional large medical centers, and Michigan State University (MSU) was a land grant university with a community-based academic health center. I determined that we would have success in this type of environment because the majority of patients seen in this environment received the majority of their care in community settings.

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Gaining a Worldview About Research and Researchers

I became socialized into the broader nursing perspectives and into the world of nursing research early in my career. I had the opportunity to meet researchers and scholars at professional meetings, beginning in the Midwest before the Midwest Nursing Research Society became a reality. The dean of my college at MSU where I was an assistant instructor sent me out to see the world. Exposure to the environment where there were researchers with doctoral degrees and the related opportunities afforded me were seminal to the development of my spirit and quest for my research career.

I represented MSU's School of Nursing at meetings in the Midwest and became familiar with the importance of the professional view and developed an understanding of what that view meant for scholarship and inquiry. It was during this type of activity when one of the first regional research groups, the Midwest Nursing Research Society, was formed. That was exciting. Being involved in meetings of the Michigan Nurses' Association, The Council of Nursing Research of the American Nurses' Association, and Sigma Theta Tau allowed me to gain a worldview of the potential of nurse researchers and of the value of nursing research. This was a decade before I had my doctoral degree. The exposure to researchers and other leaders in nursing ignited an eagerness in me to begin to want to better understand and solve patient care problems and to pursue doctoral education. Doctoral education is as rigorous as many say-it taught me to be concerned about reliable, rigorous scientific methodologies and that lesson benefited me well because the scientific rigor of my work would be scrutinized by others in diverse practices and backgrounds.

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Early Research: Selecting a Focus for Our Research Program

My program of funded research began with the Division of Nursing Human Health Services in 1978 for the study "Patient Contributions to Care: Link to Process and Outcome." This research study, a randomized clinical trial nursing intervention design in 5 community sites, had community-based nurses hired for the project to implement an intervention to influence health behaviors of patients who had a diagnosis of diabetes and hypertension. We observed that the health care system and providers had little awareness and limited concern for what happened to patients away from the acute-care setting. Even in the initial research program, our interdisciplinary research team focused on the processes and outcomes of care for the chronically ill. In 1978, our grant title spoke to the examination of process of care and patient outcomes-we were referring to patient contributions to care. Few were talking about such concepts at the time, but we believed it was essential to know how patients contributed to their own clinical outcomes, and thus, patient outcomes became a key concept in our work, especially in our early research. We believed that nurses could help chronically ill patients through nursing interventions.

My first nursing intervention model sought to encourage clients to take part in their own care (self-care and patient involvement in their care) of diabetes and hypertension. The focus was on helping patients to adhere to the therapeutic plan, diet, medications, exercise, and self-care strategies and to help them monitor their own health status. I recognized that patient "and family" reactions to the care of the patient were a concern, as was the family and social support that contributed to the patient care. As a result, the importance of family as partners in care became an integral component of research in our very first study. Outcomes included adherence, monitoring the signs and symptoms of disease and adverse effects of treatment, symptom management, depression, and functional status for the patients as well as disease control, for example, blood sugar and blood pressure levels.

These components of care remain in our research program today; thus, early in our research trajectory, we selected a focus for our program of research that remained central to subsequent designs (with each phase building on new components), new approaches, or new populations. The overall model and concepts remain vital to our work now more than 30 years later. We developed a focus for our research that described the relationship among the patient and family components of caring for a chronic clinical health problem. We found community-based research to be relevant and the patient-family member dyad to be key to the care and management of chronic illness. This first study convinced us that this was the research path for the future.

Our research team spent more than 2 decades conducting research on components of our model, which focused on patients and family members as they managed chronic disease demands. We studied diabetes, hypertension, the elderly in general, dementia, and, most recently, cancer. We decided it was essential to focus on formal and informal components of care and to consider the family as a care partner who must be included in a patient's plan of care. Our model highlighted the psychological, social, and functional outcomes for both the patient and caregiver, and symptom management was a care outcome. Understanding symptoms and the response to them is critical to our ongoing work. Our research focus expanded in 1993 to include cost and utilization of services-we added cost to our research at a time when few considered it. The value in the overall cost of care to the family was an important contribution to nursing research. This is an area that remains underdeveloped in our program of research. The health care system still does not put an economic value on the contributions to care and patient outcomes that family members bring. Family members are not generally a part of the plan of care. When we value their contributions, we will see family members emerge from this hidden care system and be considered essential partners.

As we worked with family members who were providing care to ill loved ones, we saw the physical and mental toll on caregivers secondary to providing such care. Caregiver burden was added as an essential component of our research focus when we saw that caregivers had a positive effect on patient outcomes. When caregivers were burdened, their ability to provide patient care was more challenged. We undertook this research focus before the full impact of the now commonly shorter hospital stays on family members and community services had become widely recognized and appreciated. Family caregivers and their focus on patients' care were a part of our first study, and this represented a new perspective for nursing science. We were concerned about the course of illness and its treatment, understanding family member involvement in care, contributions from formal and informal care systems, and outcomes for patient and family members of such involvement (including costs and service utilization).

Family caregivers needed a tool kit to help cancer patients with symptom management. We developed a tool kit, the Symptom Management Toolkit: A Guide for Oncology Patients and Their Families (Given BA, Given CW, Espinosa C., published by MSU), that has been used in 4 of our studies and has been distributed to thousands of patients beyond. Our studies were concerned early on with caregiver responses. We developed a caregiver burden scale entitled, "Caregiver Reaction Assessment for Caregivers to Persons With Chronic Physical and Mental Impairments." This scale has been used broadly by us, our students, and many others. It has been translated and used in Norway, Holland, China, Japan, and Taiwan to study responses of family caregivers.

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Next Phase of Research

The development and testing of nursing interventions to assist patients with cancer and their families at home and to more effectively manage both the course of their disease and the sequelae of its treatment became the continued direction of our research. Care interventions demonstrated improved patient outcomes, for example, improved symptom control, physical function, and decreased depression. For family caregivers, we demonstrated a reduction in burden and reduced depression. Interventions were designed to determine if helping family members to become involved with the tasks of physical or emotional care with confidence can reduce the burden and distress of care. Over the last 3 decades, we have continued to examine "care" as it revolves around the patient and family member beyond the acute phase of care and have focused on the home, where the majority of care and recovery occur. Patient and family involvement is critical to ongoing recovery during chronic illness but remain largely obscured from the health care system.

An exciting phase of our research now is to try to deconstruct the mechanisms of action interventions that we implement in our randomized clinical trials. It is important for nurses to know that an intervention works and to determine what it is in that intervention that works and why. Additionally, nurses need to know for whom the intervention works and under what circumstances. In one of our most recent trials, we contrasted a nursing intervention against an automated voice response system. During the analysis, we found that both arms were statistically different from baseline but not different from each other. As a nurse, without question, this required some explanation. We could not just simply accept the statistical comparison. This brought us to the realization that further analysis needed to be done to see how, when, and what components and under what circumstances each intervention worked. We consulted and had long discussions with colleagues, looking into the "black box" of the intervention to understand how much each arm delivered in strategies and when the intervention was received by the patient, when the patient tried the interventions, and how much the patient tried. Analysis of the dose and timing of the intervention, duration of symptoms, and severity of symptoms all became areas for doctoral analysis. Examining patient characteristics, as well as intervention characteristics, had to be done in detail. We were able to complete this detailed analysis because of the computerized documentation that our intervention contained. This detailed deconstruction brought many valuable insights into understanding how the intervention worked. Having this insight will now guide us in the design and analysis plan of future intervention research. This has been an exciting phase to try to understand the mechanisms in much the same way that we understand how well-studied medications work.

I have continued to articulate this value throughout my career through professional publications and presentations. Our interventions have tested the conditions under which the efforts of family caregivers can improve outcomes of patient care, and this focus continues to expand in our research. We have helped to ensure that the concerns of patient symptom management (including a focus on symptom clusters) and concerns for involvement of family caregivers in patient care remain concerns of scientists and practitioners for cancer care. This planned building on previous work and continued expansion of understanding about the same issues and concerns have been important to our program of research as we always have a next step. It is important to plan what the next steps are in building the science, so participating in setting research agendas for professional groups and for the government agencies such as the National Institute for Nursing Research (NINR) or the Institute of Medicine is a critical way to articulate needed research (priorities). Other researchers can then address these areas and integrate the gaps into their programs of research.

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Tenets That Guided Our Program of Research

Multiple tenets have guided our program of research from its early to its current efforts. We have used these purposefully and consistently across our studies.

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We developed a framework for our concepts and variables that continues to guide our research. We believe it is essential to develop depth and breadth in a few key areas and that these areas of expertise allow for our best contributions to science. Our framework from 1976 continues to guide our work, but our focus has varied with each study, each population, each state of illness, and each age group. That focus has allowed us to make scientific contributions for symptom management and caregiver responses through a comprehensive approach that has allowed us to intentionally compare our findings across the purposely varied populations, illness states, and age groups.

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We began and have continued to focus on community-based populations because MSU was not a traditional academic center. We capitalized on community-based problems as our laboratory for the conduct of research. We used community agencies and populations and collaborated with other disciplines and community clinicians, which gave us a slightly different perspective from those who conducted their research at larger urban medical centers. This collaboration allowed us to introduce a unique but competitive viewpoint into our research as our focus was on community-based populations rather than populations common to tertiary academic medical centers.

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Building an "interdisciplinary" team and creating and maintaining relationships with team members together over the years have been instrumental in developing our science. Having an interdisciplinary approach that involves clinicians broadens our research approach and expands the breadth and usefulness of our findings. We include community-based nurses as members of the team in addition to physicians and hospital-employed nurses. The interdisciplinary research team and community-based linkages remain fundamental to our research. Our interdisciplinary research team included social workers, sociologists, nurses, physicians, family ecology faculty, computer scientists, psychologists, economists, statisticians, family practice physicians, oncologists, surgeons, epidemiologists, communication scientists, and others. Students from these disciplines were involved as well.

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Clinicians help us stay grounded to real patient care situations and the care environment. This has been important as changes occurred in the health care system such as shorter hospital stays, with the advent of diagnosis-related groups, heavy use of outpatient centers for chemotherapy, and recently with the advent of oral agents.

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A major goal and philosophical approach for our program of research were to seek funding from a variety of agencies so that we could expand components due to the priorities of the varied agencies while remaining consistent with our program of research. This strengthened the depth of our program and allowed us to maintain it financially. Funding has been continuous since 1978 and has been supplied by a number of local, state, and national sources, including the American Cancer Society (ACS), Oncology Nursing Foundation, the Agency for Health Care Policy and Research, the W. K. Kellogg Foundation, the National Cancer Institute (NCI), the National Institute on Aging, the NINR, National Institute of Mental Health, the National Center for Health Services Research, Walther Cancer Foundation, and the Michigan Department of Community Health.

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With the interdisciplinary focus, publishing in a variety of research journals-not just nursing-was important because we wanted multiple disciplines to know and understand the issues and concerns of patients and families who were trying to live with their symptoms from the disease and treatment but not under the direct purview of the providers. In addition, publishing in interdisciplinary journals was essential to achieving credibility for our work outside the discipline. We have more than 200 published peer-reviewed articles. We made it our goal to publish with multiple authors and team members, including clinicians. We have published in 37 different journals with 38 different students and 32 different faculty or individuals who are now faculty (201 articles, 41 book chapters, 2 books). Broad dissemination of our work through presentations and publications was an important career goal. We have an extensive and sustained record of peer-reviewed research publications, manuscripts, and book chapters.

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One of the central topics of this work involves symptom management and function by patients and families. We have designed numerous studies (randomized clinical trials) to help refine nursing interventions to assist patients and their family members. We have been concerned with the mechanism of action of how nurses achieve results with patients for symptom management. Other major areas of focus include family caregivers assisting patients with symptom control. Caregiver involvement and caregiver responses such as burden and depression are important areas of contribution to science. We were concerned with symptom management early in our research, ensuring that patients did not suffer but that they could continue in treatment. Our work demonstrated important relationships among poor symptom control and depression, poor functional status, and poor mental health.

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We believed it was important to share our work with the nonresearch community as well and always have been attuned to sharing our findings in clear language free of jargon to community-based agencies and groups. This remains integral in translating the research to benefit community-based patients. From the beginning of our career and because of our linkage with the clinicians, we were expected to communicate to and connect with the local community. This has remained a central concern of bringing our studies to closure.

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Connecting with colleagues at various institutions within and beyond MSU or academia as well as medical centers and doing multisite research were a necessity because of limited resources-it enabled us to build a network of colleagues who would challenge our work and who broadened the research team and the settings in which our studies could be completed. The Behavioral Cooperative Oncology Group of the Walther Cancer Institute (a partnership with Indiana University, University of Michigan, Ohio State, and MSU) became a particularly vibrant source of scientific, collegial partnerships.

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Mentoring students was an important philosophy throughout our program of research. Because MSU did not have a nursing doctoral program, early mentoring of doctoral students included psychology, family ecology, sociology, and communications. Mentoring junior faculty was also a key component of our work. Although MSU did not have a doctoral program until 2001, we encouraged students on our research teams to attend graduate schools-psychology, linguistics, epidemiology, economics, computer science, nursing, and medicine. Our research environment encouraged all to achieve additional education. We are now proud to have former team members in tenure track positions working as thriving, independent researchers.

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At the professional level and consistent with the service mission of the university-providing service to organizations, community groups, granting agencies, and journal reviews-our research team benefited from all of them. Involvement with the Oncology Nursing Society (ONS) committees and task forces was important. I developed the position paper for nursing on Nurse Sensitive Outcomes (Paula Sherwood, "Putting Evidence into Practice"), and I worked with them as the PEP Cards were developed. I was fortunate to be able to lead a group to set the first research agenda for ONS, which was published in the Oncology Nursing Forum and provided a focus for the funding of their research grants. Other services, activities that were important and kept us attuned to the funding priorities, and new methods and strategies included grant reviews for a variety of agencies: ACS Komen, National Institute on Aging, National Institute of Mental Health, Alzheimer's Association, NCI, ONS, National Institute of Nursing Research, Agency for Health Research and Quality, Department of Defense, American Nurses Foundation, Canadian Cancer Foundation, and Hartford Foundation. As a result of my participation on these peer-review panels, I have positively influenced the quality and direction of nursing and nursing research at the national level.

Professional service and community involvement were important-patients and families contributed to our work so it was important to share with other groups such as the Women's Services at Sparrow Health System and Sparrow Home Care. I am now a member of the overall Sparrow Health System Board in the community, the first nurse to serve on the board in their 113-year history. I have also reviewed manuscripts for more than 32 journals. I received the Distinguished Nurse Researcher Award in 1995 and the ONS Distinguished Service Award in 2006.

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One of the major activities of our program of research has been to consider its policy implications. It was important to set research agendas and to be aware of issues that were of concern to the health care system. We wrote policy statements for state and federal legislators that developed from our research. I served on national and federal policy panels, including several Institute of Medicine panels. We wrote policy statements from our research and sent them to state and federal legislative committees.

I was asked to serve on a policy committee that set the agenda in breast cancer, which was to become the Department of Defense initiative for Breast Cancer Research, the President's Cancer Panel on Breast Cancer and Aging. I served on the ACS Blue Ribbon Committee for Behavioral Research, the NCI panel on Family Care to keep the family caregivers theme in research, the NINR panel on Family Care, and the American Association of Retired Persons and American Nurses Association Nurses and Social Work Support for Family Caregivers. I took advantage of the opportunity to participate with the Robert Wood Johnson End of Life Roundtable, NCI Advisory Panel on the Elderly, National Surgical Adjuvant Breast and Bowel Project Behavioral and Outcomes Committee, and ACS Advisory Group on Caregiving. We tried to keep state and federal legislators informed about the implications of research findings by sending policy briefs and statements on a regular basis.

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Continuing a Forward Focus

Our research program continues to focus on helping patients achieve better psychosocial and symptom outcomes. That focus underscores our current strong focus on how nursing interventions work, their mechanisms of action, when the interventions work, for which patients and caregivers, and under what circumstances. We continue to refine nursing interventions to enhance their effectiveness and their usefulness in practice. Our mission remains: How can we help patients and their families to have the best care and thus the best management of their chronic diseases?

Time spent by the family members providing care is time not spent doing other family, social, or work-related activities, and this loss must be considered a social cost of care. These stresses and conflicts may be particularly problematic at certain stages of family or individual development. We now are concerned with translating interventions through the use of technology to ensure that they are cost-effective and widely available. If our research contributes to improvement in care for patients and their family caregivers, then we have left a positive legacy.

Our program of research addresses factors that affect patient and family care needs and the costs of such care in the home and in community settings over time. In the long term, we believe that our research findings, based on a data set of now more than 700 patients and family members, have produced information that can affect and guide practice, develop interventions, and influence health care policy.

I have worked over the years to support and collaborate with many faculty, colleagues, support staff, and students who have been instrumental in my research and scholarly endeavors and who believed in me and the focus of our research to help me succeed during my professional career. We still need to be able to document how the capacity of family caregivers contributes to the implementation of complex therapeutic regimens that patients need for symptom management and emotional health. Together, we can influence patients' likelihood of remaining in treatment and of achieving positive clinical outcomes.

So as I near the end of my career, my legacy should represent contributions to science, mentoring, interdisciplinary functioning, and role modeling for students and junior faculty, as well as a positive influence on professional and scientific groups. The steps in the process of building a program of research and a professional career were deliberate and taken one step at a time. I often moved forward and sometimes fell backward; at times, my steps were fast, and other times slow. The key was to clarify the philosophical direction from the very beginning and to take those steps deliberately and purposefully. As contributors to science, we alone might not be enough to comprise a legacy, but others who build on our work will form the career legacy.

© 2010 Lippincott Williams & Wilkins, Inc.