Racial Disparities and Quality of Life in Long-Term Care

Quality of life is an important consideration for all nursing home (NH) residents, whether they have just been admitted to an NH or are facing the end of life, as many patients attach more weight to quality of life (QOL) than to longevity. Many factors can affect an NH resident’s QOL, from medical problems to social activities.¹ Part of the social facet of NH life is cultural and racial concerns. With the growing number of older adults currently and expected to be in some form of long-term care, the population of NH residents is and will soon be even more racially diverse. In addition, as a result of the growing number of older adults, many clinicians and stakeholders are concerned about costs of care, value, and quality of care. Indeed, in recent years, regulatory and research efforts have been more focused on quality of care rather than on QOL,² neglecting the need for research and policy concerning the social issues of NH living, like cultural diversity and racial disparities.

A New York Times piece by Pauline W Chen, MD, has discussed the ethical, legal, and QOL concerns when it comes to racism and racial disparities in NHs. She asserted that this topic is often ignored, in practices and in research, despite the observation that race and ethnicity seem to have a tremendous impact on patients’ experience of being ill and their sense of satisfaction with care.³ 

Social gerontologist Tetyana P Shippee, PhD, of the University of Minnesota (Minneapolis, MN), is one researcher who understands the crucial necessity for discussions of, research, and continual improvements in QOL for older adults in long-term care, especially with regard to racial and ethnic concerns. Dr Shippee even spent some of her time living in a retirement community during her PhD training to get a sense of the true QOL at an NH. A testament to her commitment to improving the daily life for older adults in long-term care, at the most recent Gerontological Society of America (GSA) confererence, Dr Shippee earned the Senior Service America Senior Scholar Award for Research Related to Disadvantaged Older Adults.

In order to gain an in-depth understanding of the current QOL and racial issues in long-term care, and to benefit from her insights earned from her personal experiences in NHs, Annals of Long-Term Care: Clinical Care and Aging^® spoke with Dr Tetyana Shippee, assistant professor at the University of Minnesota in the Division of Health Policy and Management.

We saw you received the Senior Service America Senior Scholar Award at the 2015 GSA meeting. Congratulations! Tell us about the research that earned you the award and why you think it stood out.

This award was given for my research on racial disparities in quality of life (QOL) for nursing home (NH) residents. This work is innovative because, traditionally, much of the research on NHs has focused on quality of medical care but not QOL. While quality of care typically assesses care processes and directly related medical outcomes via primarily staff reports, QOL is a patient-centered measure capturing multiple aspects of resident well being. We posit that both are equally important. 

It’s important to examine QOL for minority residents because the proportion of minority older adults residing in NHs has increased dramatically in the past decade. Indeed, current estimates show that the proportion of minority NH residents will surpass that of white adults by 2030. Prior studies show that racial disparities exist in quality of care, but little research has examined racial differences in QOL; and QOL is typically measured poorly or among small qualitative samples. Our work, for the first time, found racial disparities in NH resident QOL using validated measures of QOL in a large sample of residents (about 13,000 in-person interviews with all residents in Medicaid-certified NHs in Minnesota). Our findings showed that facility proportion of minority residents predicted QOL more consistently than individual-level race/ethnicity, likely reflecting stark inequality in facility factors among NHs serving minority versus white residents.

Can you tell us a bit more about your various research interests? What led you to focus on these areas of geriatrics?

I am a social gerontologist (dual-title PhD in sociology and gerontology) with a vision to improve QOL and quality of care for older adults and address health disparities over the life course. My research focuses on two main topics: 1) QOL and quality of care in long-term care (LTC) settings, and 2) racial disparities in health over the life course, including LTC. Key concepts in my work include cumulative inequality theory, which I co-developed (more on this later), and patient-centered measures of QOL and social engagement. My research on LTC primarily focuses on the role of institutional and individual factors influencing QOL in LTC settings. 

This interest was sparked by living in a retirement facility for two years during my graduate studies, performing qualitative work to better understand residents’ experiences. My findings showed that, for older institutionalized adults, QOL was just as important as their medical care. Because of this, I have decided to dedicate my career to focusing on measuring, modeling, and improving QOL for older adults, especially those who live in institutional settings. I have received strong interest from the senior housing industry in my work, as well as patient advocates for residents and family members. Most recently, I extended this work to the relationship between structural facility factors, resident characteristics, and NH resident QOL, including racial disparities in QOL (see above).

Can you tell us more about what was it like living in a retirement community for two years? How did your experiences affect your research?

I lived in a retirement community as part of my interdisciplinary doctoral training when I was pursuing a dual-title PhD in sociology and gerontology from Purdue University (West Lafayette, IN). It was because of this experience that I developed a personal passion for improving QOL for older adults in LTC settings. My research while living in the facility focused on how transitions between levels of care (independent living to assisted living to nursing living) affected residents’ QOL and well being as well as understanding the experience of living in a LTC setting. Later, I expanded the project into a comparative study of two facilities, examining the role of individual and facility factors for residents’ social engagement. This work included four years’ worth of observations, interviews, and building relationships with residents, administrators, and staff that still last to this day. 

These research experiences convinced me of the vital role that social engagement, meaningful activities, and relationships play in the lives of older adults in LTC settings. Many residents talked about medical care as an inevitable part of their life (and the reason why they were in institutional LTC) but described it as something they did not like to dwell on. Instead, residents talked about meaningful people in their lives (some had close relationships with facility staff), their goals, interests, and aspirations. They wanted me to know them as individuals with life stories and personalities who still had much to contribute to society rather than patients in need of care. These experiences have motivated me to focus on improving QOL for older adults and not just limiting policy focus to quality of care. 

What did you learn from your time in the retirement community in relation to your interest in racial disparities in health care? 

The facility where I lived was similar to most continuing care retirement communities (CCRCs): primarily white residents, mostly women, and better-off financially. It is still a commonly held belief that institutional LTC settings mainly serve the needs of white residents and that minorities receive care at home from familial caregivers. Yet, that is no longer the case for NHs, which provide care for an increasingly growing proportion of minority residents (the proportion of minorities in NHs will surpass that of white residents by 2030). One reason for such an increase in the proportion of minorities in NHs is that white residents, who usually have more economic resources relative to their non-white peers, choose to either move to assisted living or receive services in other settings such as CCRCs (which often require a considerable down payment) or at home. Older non-white adults typically lack economic resources for such services due to a host of factors, including discrimination in housing and, thus, end up going to NHs in higher numbers since they can’t afford other types of care. 

My experience living in the retirement community showed me how one’s health status affected social engagement (eg, many residents did not want to interact with those who were cognitively impaired), that relationships between residents and staff matter for residents’ well-being, and that residents desire for their surroundings to honor their personal stories and preferences. Unfortunately, there is not much work on preferences and expectations of minority NH residents, so I hope to pursue this work in the near future. 

Can you explain your cumulative inequality theory for us and perhaps how it has evolved or has been elaborated upon in recent years since you and Dr Ferraro developed it in 2009?

Cumulative inequality theory (CIT) is a middle-range theory that draws from sociology, gerontology, and psychology and aims to provide a systematic consideration for how inequality accumulates over the life course. Ken Ferraro and I developed CIT in response to the growing research that kept supporting the maxim that “disadvantaged accumulates” but did not provide ways to actually test the process of accumulation. The theory consists of axioms and propositions that identify the conditions under which inequality does and does not accumulate. While recognizing structural forces and constraints, CIT also addresses human agency and the role of compensatory resources. The theory has been widely cited (192 times, according to Google Scholar) and has been used in articles and student dissertations since it’s been developed. It serves as a primary conceptual model for my work on racial disparities. In this line of work, I employ longitudinal analyses to study racial/ethnic differences in utilization (typically of acute health care and complementary and alternative medicine) and outcomes (eg, death, length of stay, self-rated health), and the mechanisms driving those inequalities (particularly, access barriers, insurance status, discrimination, and employment). I recently used CIT to examine the role of health transmission between mother-daughter pairs and examine racial differences in these processes, using data over three decades on matched mother-daughter pairs. 

In your opinion, what is the main concern for, or barrier to, high QOL in LTC settings? 

Barriers to high QOL are both structural and individual. From our work, we know that resident health and expectations influence their QOL. Our findings also show that facility factors such as staffing have a considerable impact on QOL. In particular, more direct care hours by activity staff have a positive association with resident QOL. We also know that facility size, funding, and quality ratings are associated with resident QOL: residents in larger facilities, those primarily funded by Medicaid and with lower quality of care ratings, report lower QOL. Thus, facility resources, or lack thereof, could be a major barrier for resident QOL. 

1. Warshaw G. Ensureing quality of life in nursing home residents. Annals of Long-Term Care: Clinical Care and Aging. 2014;22(3):16. 

2. Erickson P, Kendall EA, Anderson JP, Kaplan RM. Using composite health status measures to assess the nation‚Äôs health. Medical Care. 1989;27(supp 3):S66‚ÄìS76. 

3. Chen PW. When the Patient is Racist. New York Times. [blog post]. Published July 25, 2013. http://well.blogs.nytimes.com/2013/07/25/when-the-patient-is-racist/?_r=0. Accessed May 10, 2016.