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Case Management Quality-of-Life Outcomes for Adults with a Disability
The increasing number of working-age adults with a long-term disability has created a need for case management focused on quality-of-life issues as well as functionality. An adaptation of the Quality Health Outcomes Model was used to explore relationships between case manager types and services and characteristics of adults with a disability. Outcome measures included social participation, health maintenance behaviors, and economic productivity. Secondary data analysis of the 1994 National Health Interview Survey Disability Supplement provided a purposive sample of 371 working-age adults with a disability (AWDs). Problems with instrumental activities of daily living and activities of daily living were reported by 74.7% of participants, with activity limitations a main predictor of outcome achievement. Although family members or friends were chosen by 78% of the sample to coordinate their medical care, case manager type demonstrated no influence on the outcome measures. Rehabilitation nurses should use their knowing of person to develop, implement, and evaluate interventions and systems focused on the ability of AWDs to achieve quality-of-life outcomes.
As the number of adults with a disability (AWDs) increases in the United States, effective long-term management of their healthcare needs has become an invaluable commodity. Case management, “a collaborative process of assessment, planning, facilitation, and advocacy for options and services to meet an individual’s health needs through communication and available resources to promote quality cost-effective outcomes” (Case Management Society of America, 2002), frequently is used to manage complex healthcare problems. Although medically oriented outcomes associated with morbidity and mortality always will be a primary focus of case management, important quality-of-life (QOL) outcomes desired by AWDs include emotional health; quality relationships; maximized functional potential; an enjoyable, meaningful life (Pain, Dunn, Anderson, Darrah, & Kratochvil, 1998); and maintaining control over one’s body, mind, and life (Albrecht & Devlieger, 1999).
AWDs frequently use case managers to support their achievement of desirable outcomes. Although physicians, rehabilitation nurses, and social workers frequently function as case managers (Huber, 2002; Tahan, 1998), family members and friends of AWDs also can assume the case manager role. Given the different types of case managers, the scope of the case manager role, and the diverse characteristics of AWDs, achieving outcomes of importance is a challenge.
To study the influence of case managers, their interventions, and AWD characteristics on QOL outcome achievement, an adaptation (Borglund, 2003) of the Quality Health Outcomes Model (QHOM; Mitchell, Ferketich, & Jennings, 1998) was used as the conceptual framework for the study (Figure 1). In the QHOM, outcomes do not occur as a direct result of an intervention with a client, but rather “affect and are affected by both system and client characteristics in producing desired outcomes” (Mitchell et al., p. 44). While the theoretical QHOM features numerous reciprocal relationships among interventions, systems, and client characteristics that affect outcomes, the adapted model was created to provide a single, unidirectional approach for identifying independent and combined relationships between predictor and outcome variables (Figure 1). The National Health Interview Survey Disability Supplement (NHIS-D) variables chosen for this research reflected all of the QHOM elements: interventions, systems, client characteristics, and outcomes (Table 1 and Figure 1).
The purpose of this research was to identify how the type and extent of relationships between AWD characteristics, case manager type, and case manager interventions affect the achievement of QOL outcomes. The outcomes of interest include an AWD’s ability to participate in family and community activities, demonstrate health maintenance behaviors, and engage in economically productive activities.
The outcomes chosen for this research were based on the belief that people with a disability should be perceived as having wellness in everyday life, rather than illness. In Dunn’s (1961) classic work High-Level Wellness, wellness was visualized for the first time not as the opposite of illness, but rather as a healthcare perspective oriented toward maximizing a person’s potential within the environment in which he or she functions (p. 5–6). In 1990, Stuifbergen, Becker, Ingalsbe, and Sands’ study of the health perceptions of AWDs suggested that being healthy is more than the mere absence of illness or impairment (p. 18). Albrecht and Devlieger’s (1999) interviews with adults with moderate-to-severe functional disabilities revealed that “quality of life is dependent upon finding a balance between body, mind, and spirit in the self and on establishing and maintaining a harmonious set of relationships within the person’s social context and external environment” (p. 977). The wellness paradigm continues to develop; in 2007, the U.S. Department of Health and Human Services identified healthcare needs and challenges related to providing care for people with disabilities (U.S. Department of Health and Human Services, 2007).
Research on promoting the health or wellness of AWDs has provided insight into the nature of QOL for AWDs. Pain and colleagues’ (1998) concept analysis of focus group interviews with both patients and their families receiving rehabilitation services concluded that “measures of functional status cannot be used as a proxy indicator of QOL” (p. 10), and that QOL must be viewed as a multifactoral construct. Further clarification of the concept of health or wellness for people with disabilities was described in the disability objectives chapter of the 1998 document “Healthy People 2010 Objectives: Draft for Public Comment” (Public Health Service, 1998). The document included information about healthy lifestyle outcomes, preventing secondary conditions, self-monitoring health care, and participating in common life activities as important QOL indicators for people with disabilities.
The outcome “engagement in social activities with family, friends, and the larger community” reflects a person’s participation in relationships and enjoyable activities (Pain et al., 1998). Stuifbergen and Rogers’ (1997) interviews with adults with multiple sclerosis revealed that “the most frequently identified domain of QOL was family” (p. 10). Research with people who have sustained a spinal cord injury continues to support the importance of this outcome. A study of long-term outcomes and life satisfaction by Vogel, Klaas, Lubicky, and Anderson (1998) indicated that although attention to physiological needs was important, QOL and life satisfaction were multidimensional concepts involving the ability to engage in social and self-care activities. Manns and Chad’s (2001) research identified relationships and social functioning as one of nine themes representing QOL for people with a spinal cord injury, while Lund, Nordlund, Bernspång, and Lexell’s (2007) research indicated an association between perceived participation in life’s activities and life satisfaction.
A second outcome—demonstration of health maintenance behaviors—was chosen because AWDs often seek to maintain control of their bodies given the limits of their disability (Albrecht & Devlieger, 1999). Taking medications as prescribed and engaging in regular visits to a primary healthcare provider were measures of this outcome. To determine whether self-care practices can enhance the health status or help identify needed professional healthcare services among people with disabilities, Gulick (1991) studied people diagnosed with multiple sclerosis over a 3-year period. Periodic self-assessment and monitoring of symptoms with feedback and related information resulted in significantly fewer office visits and acute hospital admissions (p. 205) and less use of nonprescription drugs for the experimental group (p. 206). Research on health-promoting behaviors completed by Stuifbergen, Seraphine, and Roberts in 2000 indicated that social support resources significantly correlated with QOL, self-efficacy, and acceptance.
The outcome “being economically productive” was chosen as a measure of the QOL dimension of maximizing functional potential (Pain et al., 1998). Numerous large national studies with AWDs have revealed that despite educational preparation and previous work experiences, employment for AWDs is significantly below the employment level for adults without a disability (National Organization on Disabilities, 1998; Yelin & Callahan, 1995; Yelin, Sonneborn, & Trupin, 2000). From a wellness perspective, Freedman and Fesko’s (1996) focus group discussions with people with significant disabilities and their families revealed that “work played an integral role in developing self-esteem as well as contributing to a sense of being part of society” (p. 53). Family members were found to be protective, while people with a disability appeared “more risk-taking in terms of current work situations and future work goals” (p. 53). Rosenberg’s (1999) study of employment as a functional level for adults with congenital heart disease revealed that only 25% of the sample reported missing work or leisure activities because of their heart problem; disability was not equated with illness as a reason to miss work.
Case Management Research
A literature review on the type of case manager revealed steady growth in the number of case managers with diverse training backgrounds (Mullahy, 1995). Descriptive studies on the types of case managers have focused on education programs for case management for nurses and other healthcare professionals (Haw, 1996; Shaw, McMahon, Chan, Taylor, & Wood, 1997) and outcomes based on case manager educational preparedness (Szymanski & Parker, 1989).
Descriptive research also has examined the interventions or services of case managers from the perspectives of case managers (Newcomer, Arnsberger, & Zhang, 1997), caregivers (Smith & Smith, 2000), and those requiring case management services (London, LeBlanc, & Aneshensel, 1998; Nufer, Rosenberg, & Smith, 1998). The studies revealed that although knowledge of service availability and coordination of services are important aspects of a case manager’s work, a focus on QOL needs for AWDs also is considered important.
Although research has identified QOL outcomes as important to AWDs, the literature reveals limited work describing the achievement of these outcomes. This research describes the extent of relationships between different types of case managers, case manager activities, and AWD characteristics to outcomes associated with major life activities for the age group studied (ages 18–64).
Secondary data analysis of variables from the 1994–1995 NHIS-D (National Center for Health Statistics [NCHS], 1997, 1998) was used to answer the research question: What is the extent of the independent and combined contributions made by different types of case managers, case manager interventions, and the characteristics of working-age adults with a disability to QOL outcomes? Based on the historical reuse of the annually obtained NHIS, the extensive sampling criteria and selection process for inclusion in the NHIS-D, and the representativeness of the raw data variables for use in this research (NCHS, 1994), the NHIS-D provided an appropriate and accessible database to answer the research question. After receiving expedited institutional review board approval for the research, statistical analysis of 14 predictor variables on three dependent QOL outcomes was completed using SPSS (Table 1).
The purposive sample was 371 people between the ages of 18 and 64 with an identifiable medical or psychosocial diagnosis that met the 1994 NHIS-D enrollment criteria (NCHS, 1997). The use of a nurse, social worker, or family member or friend as a coordinator of their medical care and the availability of demographic- and disability-related data completed this study’s inclusion criteria. Based on Cohen’s (1988) convention that the desired power value be set at .80 (p. 56), a sample size of 371 subjects was determined sufficient when using alpha (α) ≤ .05 for correlation tables and statistical tests, 14 predictor variables, and a medium correlation effect size of q = .30. Contingency tables were created to identify the presence and strength of relationships existing between the variables. Data analysis included descriptive statistics, Pearson correlations, and regression models for each outcome of interest.
The data revealed a predominantly white ethnic group (n = 276, 74.4%), with a broad dispersion of age, gender, marital status, education, and family income characteristics (Table 2). Other sample characteristics (Table 3) included a diversity of disability types, a majority of AWDs reporting no short-stay hospitalizations (n = 283, 76.3%), and a high frequency of problems with instrumental activities of daily living (IADLs) and activities of daily living (ADLs; n = 277, 74.7%). The use of family or friends as case managers for coordination of medical care predominated the findings (n = 289, 80%).
Bivariate analysis revealed that 48.2% (n = 179) of the AWDs comprised either men 25–44 years of age or women 45–64 years of age. Among respondents, 51.5% completed some or all of high school (n = 191), with another 22.1% (n = 82) completing all or some education beyond high school. The majority of adults (60%) with metabolic-, orthopedic-, or drug/alcohol-related disabilities were 45–64 years of age, while 57.4% of the adults with psychosocial disabilities (n = 31) were 25–44 years of age.
Further analysis revealed that as education levels increased, so did the percentage of AWDs reporting past experience with working. However, for both high school and college graduates, the majority of those with prior working experience were no longer able to work.
Of adults with either an ADL or IADL difficulty (n = 123), 80.4% (n = 99) reported the problem to be with an IADL. Of those with both IADL and ADL problems, 48.1% (n = 115) were unable to work.
Data correlating type of case manager with sample characteristics revealed that for AWDs choosing either family or friends (66.8%, n = 193) or nurses (64.4%, n = 38) as their case manager, family incomes were above $18,000. When social workers were their case managers (74%, n = 17), family incomes of $14,000 or less were reported. People with metabolic and orthopedic disabilities used nurses as their case managers 29% of the time (n = 36), while social workers were the case managers for 52.2% (n = 12) of subjects with psychosocial disabilities. No statistical significance was found between the type of case manager and activity limitations, ADLs, or short-stay hospitalizations.
Case manager interventions, limited in the NHIS-D to variables identifying the use of a social worker, nurse, or independent-living services, were found to have a low frequency of reported use. Social work services were received by 56.5% (n = 13) of subjects who had a social worker as a case manager, compared to 6.9% (n = 20) who had a family member or friend as case manager and 13.6% (n = 8) who had nurse case managers. Only 10 subjects received independent-living services (2.7%), with no such services received by AWDs with nurse case managers. Visiting nurse services were received by 13.6% (n = 8) of subjects with nurse case managers, but were received by less than 6.3% of subjects with either a family member/friend or social worker as their case manager.
Regression models were created after scrutinizing the correlation matrix for statistically significant correlations to the outcome variables. After controlling for multicollinearity, final models were created for three of the four variables (Tables 4–6). None of the predictor variables demonstrated a statistically significant relationship to the outcome variable “regular visits to primary healthcare provider.”
Final models for the outcome variables “participation in social activities” and “economic productivity” revealed a significant influence for the predictor variable “activity limitation status.” Type of case manager did not demonstrate any significant relationship to the outcomes and was not a factor in any of the final regression models. The variable “visiting nurse services” was included in the final model for the outcome “takes medications as prescribed.”
Although case management has proven useful for achieving outcomes for people with complex healthcare needs (Papenhausen, 1995; Slack & McEwen, 2000), using a nurse, social worker, or family member/friend as a coordinator of medical care was identified by only 371 of the more than 11,000 people enrolled in the 1994–1995 NHIS-D. This underutilization was further compounded by the preponderance of family members and friends acting as case managers and the limited use of professional services. The limited data in the NHIS-D describing case managers and their activities suggest that further investigation into the relationship between educational preparation, the selection process, and responsibilities of case managers related to achieving QOL outcomes is indicated.
The sample’s demographics revealed that AWDs are found across all adult age groups, income levels, and educational backgrounds. The transition from predominantly cognitive and psychosocial disabilities in the younger age groups to the orthopedic and metabolic disabilities of the older group identifies the scope of disability across age groups. Although research addressing QOL has been completed with adults with congenital disabilities (Simko & McGinnis, 2003; Svien, Berg, & Stephenson, 2008) and with adults who have acquired neurological disabilities as a result of trauma (Manns & Chad, 2001; Lund, Nordlund, Bernspång, & Lexell, 2007), QOL outcomes research with adults acquiring disability as a result of chronic illness or aging is needed to further understand the meaning of QOL and wellness for this rapidly expanding group.
The relationship between activity limitation and economic productivity also is an important topic for future research by case managers. Although 80% of the sample reported previous work experience, 90.3% also reported a limitation in ability to work. Statistics linking education levels and past work experiences with reported ability to work, and the loss of more than 50% of the college- and high school-educated AWDs from the workplace, speak to how significantly a person’s life may change as the result of a disability. Perhaps the loss of the ability to work, despite educational preparation and past work experience, may be the motivating factor for an AWD to seek medical care with case management assistance. As working-age AWDs get older, QOL outcomes that do not include economic productivity but do reflect other definitions of wellness and QOL for retired-age AWDs will need to be identified.
The relationship noted between the variables “activity limitation measured by ability to work” and “IADL and/or ADL problems” provided additional insight into the daily living experiences of AWDs. Although these variables did not describe the extent of an activity limitation nor specific IADL/ADL problems, AWDs’ ability to complete IADLs was particularly important. The regression model for the outcome “participation in social activities” also suggested that AWDs with past working experience and the least limitation in their activity level were the most likely to engage in social activities. For case managers, this finding suggests that developing and using interventions or systems focused on activities that promote an AWD’s ability to work will support the social participation QOL outcome.
The outcomes used as measures of health maintenance behaviors provided two different views of case management activities. For AWDs receiving professional services, a relationship to taking medications as prescribed was found. However, with no relationships identified between any of the predictor variables and the outcome “regular visits to primary care provider,” the question of whether routine health care and screening are considered focuses for case managers must be addressed. With minimal use of healthcare professionals as case managers in this study and the limited correlations observed between type of case manager and type of disability to the other study variables, outcomes focused on maintaining optimum health or wellness need further clarification.
Limitations to this research primarily were related to secondary analysis of self-reported data. Although providing access to a large sample, secondary data analysis does not give researchers input into instrument construction or data collection. Although the demographic- and work-related data were sufficient in the NHIS-D, more detailed information describing the disabilities, activity limitations, activities of case managers, the nature and type of desired healthcare services, and the extent and nature of ADL/IADL problems would have provided a clearer understanding of their connection to outcome achievement.
Implications for Practice and Research
For rehabilitation nurses working as case managers, the finding that case manager type exerted no influence on QOL outcomes raises questions about the focus and activities of case managers. Despite case management’s acceptance as an effective mechanism for the delivery of healthcare system services, the roles and responsibilities of case managers (Robbins & Birmingham, 2005) and the diversity of case management models (Haag & Kalina, 2004; Huber, 2002; Long, 2002) remain disparate across settings and systems. Given the limited numbers of AWDs enrolled in the NHIS-D who had professional case managers coordinate their medical care, there is a need for educational programs and support systems for family members and friends who function as case managers.
The QHOM, with its inclusion of client, intervention, and system variables on the attainment of outcomes, provides a useful framework for studying nursing’s metaparadigm of person, environment, health, and nursing (Radwin & Fawcett, 2002). In the future, rehabilitation nurses will be able to use the adapted QHOM to examine the relationships between specific case management systems and processes, client characteristics, and nursing interventions on outcome achievement. Although guidelines delineating case manager functions now exist (Tahan & Huber, 2006), nursing research focused on designing and testing interventions, systems, and processes with regard to QOL outcomes should reflect nursing’s perspective on the wholeness of the person for case management practice. Variables reflecting the QHOM concepts also need to be included in future NHIS-D and other surveys addressing QOL for AWDs.
Finally, as life expectancy continues to rise, AWDs will require long-term case management of their medical conditions. Although the importance of economic productivity to working-age AWDs is well documented, nursing research examining the chronic effects of a disability on other QOL outcomes will become increasingly important. Interventions and systems need to be studied so health maintenance behaviors and functionality are visualized as a means to desired outcomes rather than as outcomes themselves.
About the Author
Susan T. Borglund, PhD RN, is an assistant professor at Christine E. Lynn College of Nursing, Florida Atlantic University in Boca Raton, FL. Address correspondence to her at firstname.lastname@example.org.
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