Abstract
Introduction
With the increasing proportion of older adults in the population, nationally and internationally, researchers are becoming more focused on how society can care for the increasing numbers of frail elderly adults who require long-term care services. Persons more than age 80 comprise the fastest growing segment of the population in the United States (Perlich, 2008). Of these, it is estimated that one in four will need long-term care at some point due to increased disabilities and illness (Arai & Zarit, 2011). Due to the increase of older adults using long-term care facilities, there has been growing interest in the quality of life (QoL) and well-being of older adults who reside in long-term care facilities (Baker, 2007; Kane, 2001, 2003).
Institutional long-term care is generally marked by rigid schedules and routines, with little choice or dignity for those receiving care. Family members often threaten legal action to get adequate care for their family members (Johnson, Dobalian, Burkhard, Hedgecock, & Harman, 2004). Staff are dissatisfied, and turnover is very high (Castle, 2005, 2006). Long-term care institutions are plagued with challenges that may negatively affect residents’ QoL, such as high staff turnover, rigid schedules, and routines that minimize personal choice.
To help rectify the difficulties associated with institutional living, a movement in long-term care called culture change focuses on a revolution in long-term care settings to create environments where the residents are at home; family members enjoy visiting; employees are respected and appreciated, and their opinions valued; quality of care is excellent; life is worth living; and legal action is unnecessary (Bergman, 2004; Rabig, Williams, Kane, Cutler, & McAlilly, 2006; Zimmerman & Cohen, 2010). Associated with the culture change movement is the need to adequately measure outcomes such as well-being (Kane, 2003). The traditional model of long-term care has well-defined measurements focused mostly around medical care issues. These outcomes can be effective for determining if an individual is receiving appropriate physical care, but they rarely measure well-being and whether life is worth living.
The Eden Alternative
The Eden Alternative is a current initiative aimed at improving the QoL and well-being of long-term care residents (Baker, 2007; Drew, 2005; Rabig et al., 2006; Ransom, 2006). The Eden Alternative states that the bulk of suffering experienced by residents is caused by loneliness, helplessness, and boredom (i.e., the three plagues). Organizations implementing the Eden Alternative are person-centered communities committed to creating home where the residents are the decision makers (Thomas, 1996, 2004).
Through this philosophy, Thomas (2004) advocates that to care for the human spirit, and eliminate the three plagues, organizations need to integrate many opportunities for companionship (the antidote for loneliness), balance the giving and receiving of care for all (the antidote to helplessness), and create an atmosphere filled with variety and spontaneity (the antidote to boredom).
Organizations implementing the Eden Alternative philosophy drive meaning deep into the lives of the elders and those closest to them. The opportunity to do things that are meaningful is essential to human health. The Eden Alternative advocates that although medical treatment is lifesaving, genuine human caring must come first. A deep knowing of the person and their life goals and preferences should drive treatment decisions. Finally, the Eden Alternative philosophy asks that the elders be honored by placing the maximum possible decision-making authority in their hands or the hands of those closest to them (Thomas, 2004). To achieve that goal, self-directed work team evolution has to occur and person-directed care must be honored.
There are two driving forces that make the creation of home possible. The first is an organizational commitment to ongoing growth for everyone including the residents receiving services and all their caregivers. The second concept that drives deep, sustainable change is wise leadership (Thomas, 2004). Organizations with committed, wise leaders (formal and informal) have a stronger chance of achieving and sustaining change in the face of competing priorities. The ultimate outcome of these two driving forces is well-being for all.
Literature Review: QoL
The concept of QoL has been important to researchers for the past 30 years and, more recently, has become a concern of those studying the satisfaction of residents in long-term care settings (Straker, Ejaz, McCarthy, & Jones, 2007).
QoL is generally considered a multidimensional construct including aspects of psychological, social, and physical well-being (Snoek, 2000). QoL is considered a subjective experience, defined by the individual person and not by the professionals (Applebaum, Uman, & Straker, 2006; Straker et al., 2007). QoL is often operationalized by a score on a questionnaire or survey (Snoek, 2000).
The work of Rosalie Kane (2003), PhD, at the University of Minnesota, pioneered research in QoL in long-term care settings. The study developed QoL domains and items for each QoL domain. The domains included those QoL elements required under federal regulation of nursing homes. The QoL scales were administered to 1988 residents, above the age 65 in 40 nursing homes in five states. The 11 domains of QoL developed through Kane’s study include autonomy, dignity, privacy, individuality, safety, security and order, physical comfort, relationships, meaningful activity, food enjoyment, functional competence, and spiritual well-being (Kane, 2003).
A systematic review of QoL study methods and results was completed by Castle in 2007. The authors identified 453 studies examining long-term care and some type of satisfaction. Fifty studies that used a QoL instrument or developed a QoL instrument were identified resulting in a sample size of 50. Results indicated that studies varied considerably in the domains that comprised QoL, ranging from two (McCaffree & Harkins, 1976) to 14 (Cryns, Nichols, Katz, & Calkins, 1989), with the mean number of domains being 7. Measurement types utilized in the study, sample size, and study design also varied considerably. Many of the surveys reflected concerns of the providers rather than concerns of the residents (Castle, 2007). A major criticism was the lack of scientific methods used to develop the surveys (Cohen-Mansfield, 2000; Ejaz & Castle, 2007).
Custers, Westerhoff, Kuin, and Riksen-Walraven (2010) identified caring relationships as a major component in improving QoL for nursing home residents. They interviewed 88 nursing home residents between the ages 50 and 91. Standardized instruments included an adapted Geriatric Depression Scale (Jongenelis et al., 2007), Satisfaction With Life Scale (Pavot & Diener, 1993), and a nine-item Satisfaction With Relationships Questionnaire. Results pointed to caring relationships correlated with decreased depression scores and higher life satisfaction scores.
Schenk, Meyer, Behr, Kuhlmey, and Holzhausen (2013) examined QoL in nursing home residents through qualitative methods. Forty-two residents from eight nursing homes completed semi-structured narrative interviews. Ten domains of QoL were identified: social contacts, autonomy, security, privacy, meaningful activities, being informed, health, peace and quiet, feeling at home, and a variety of stimulation. This study points to QoL being a multidimensional concept comprised of domains beyond just health care.
The Eden Alternative Well-Being Assessment Tool (EAWBAT)
Well-being (wĕl’bē’ĭng) n: A contented state of being
Eden Alternative gathered a task force of experienced culture change leaders, educators, and researchers. Their goal was to define well-being for elders (residents), employees, and family members. The task force identified seven primary domains of well-being: Identity, Growth, Autonomy, Security, Connectedness, Meaning, and Joy. These domains drove the development of the EAWBAT: a well-being assessment for elders (residents), employees, and family members.
The initial EAWBAT was piloted in two long-term care facilities in Tennessee and two in Pennsylvania. The questionnaires were given to 75 elders (residents), 29 family members, and 45 employees. The questionnaires were analyzed for internal consistency and reliability. Cronbach’s alpha was calculated for each of the seven domains. Most subscales (domains) achieved a reliability of .67.
The purpose of the current study was to further examine the psychometric properties of the EAWBAT assessment tools through a larger sample of residents, employees, and family members of long-term care facilities implementing the Eden Alternative Principles.
Method
Design
The study was a nonexperimental, cross-sectional study aiming to determine the psychometric properties of the EAWBAT. The convenience sample for this study was drawn from a total of 10 communities: one in New York, five in Colorado, and four in Utah. The total sample includes 237 elders, 430 employees (representing a range of employees including dietary, custodial, nursing, social work, activities, and administration), and 131 family members. Detailed information about each participating long-term care community is captured in Table 1.
Details of Organizations.
Costello and Osborne developed criteria for best practice in factor analyses. They suggested best practice for extraction, rotation, number of factors to interpret, and sample size. Strict rules about sample size have mostly disappeared and adequate sample size is partially determined by the strength of the data. Strength of the data is related to the number of variables that load under a factor during the analysis process. Factors with less than three loaded items are considered unstable. In studying social sciences, they recommend that a factor is strong when the items load with scores that range from .40 to .70. Using these criteria, the study sample size was adequate to perform exploratory factor analysis for each tool (Costello & Osborne, 2005).
Inclusion and Exclusion Criteria
The only criterion for inclusion in the study was to be a resident, employee, or family member of a resident residing in one of the 10 communities. The only exclusion criterion was inability to understand or respond to the assessment tool statements. The inability to respond or understand the statements was determined at the time of the interview by a trained interviewer or an employee who knew the resident well.
Procedures
Data were collected from family members and employees through a paper or electronic assessment tool. Participants were recruited through a variety of methods including flyers posted in employee lunch rooms, letters sent to families and employees, and residents invited to participate by trained researchers and employees. Trained research assistants, or employees who knew the resident well, helped the residents complete the assessment tool, when necessary. Those assisting would ask the questions of the residents and then record their response. The assessment tool took approximately 15 min to complete. Informed consent was completed before the interview was done.
Human Subjects Procedures
Ethics approval was sought and obtained by the University of Utah Institutional Review and Ethics Board.
Analysis
Items from each of the assessment tools, elder (resident), family, and employee, were subjected to principal component analysis (PCA) with varimax rotation using SPSS 22. Prior to performing PCA, suitability of data for factor analysis for each scale was assessed utilizing the Kaiser-Meyer-Olkin measure of sampling adequacy (KMO) and the Bartlett’s Test of Sphericity. KMO results for the three assessment tools ranged from .848 for the family tool to .897 for the elder tool. KMO values greater than .8 are an indication that factor analysis will be useful for the variables; all of the tools exceeded the recommendation of .6. In addition, the Bartlett’s Test of Sphericity value was significant at
Elders assessment tool
A 5-point Likert-type scale was used for the elder well-being assessment tool: 1 =
Employee assessment tool
The employee assessment tool utilized a 5-point Likert-type scale from 1 =
Family assessment tool
The family assessment tool utilized a 5-point Likert-type scale from 1 =
Results
The analysis of the EAWBATs showed a strong correlation between the statements in the assessment tools and the domains of well-being. The well-being assessment tools were validated as measuring what they intended to measure.
In the elder well-being assessment, the items relating to the well-being domains of growth and autonomy loaded together in the factor analysis as did the items relating to the domains of identity and meaning. In reviewing the results, the research team combined these domains. The final result was five domains in the assessment tool.
In the employee well-being assessment, the items relating to the well-being domains of meaning and connectedness loaded together in the factor analysis. In reviewing the results, the research team combined these domains. The final result was six domains in the assessment tool.
In the analysis of the family well-being assessment, the statements for each domain loaded under seven separate factors. The final result was seven domains in the assessment tool.
Elders
The 5-point Likert-type scale was collapsed to a 3-point Likert-type scale for the factor analysis: 1 =
PCA with varimax rotation revealed the presence of seven factors with eigenvalues ranging from 1.035 to 7.285, accounting for 69% of the variance. Of the original 30 statements, four were eliminated due to cross-loading, resulting in 26 statements in the elder well-being assessment tool. Two factors were eliminated due to low component loads. The five factors retained accounted for 60% of the variance (see Table 2). The resulting domains were (a) Growth and Autonomy, (b) Joy, (c) Connectedness, (d) Identity and Meaning, and (e) Security. Cronbach’s alpha for the overall scale was calculated at .911 and for the separate domains as follows: Growth and Autonomy = .79, Joy = .78, Connectedness = .76, Identity and Meaning = .74, and Security = .56.
Factor Analysis—Elder Well-Being Assessment Tool.
Employees
PCA with varimax rotation revealed the presence of nine factors with eigenvalues ranging from 1.04 to 7.29, explaining a total of 58.36% of the variance. Of the original 38 statements, 10 were eliminated due to cross-loading, resulting in 28 statements in the employee survey. Three factors were eliminated due to low component loadings, and six factors were retained, accounting for 48% of the variance (see Table 3). The resulting domains were (a) Meaning and Connectedness, (b) Autonomy, (c) Security, (d) Growth, (e) Identity, and (f) Joy. Cronbach’s alpha for the scale was calculated at .86 and for the separate domains as follows: Meaning and Connectedness = .89, Autonomy = .71, Security = .74, Growth = .68, Identity =, .50, and Joy =, .57.
Factor Analysis—Employees Well-Being Assessment Tool.
Family Members
PCA with varimax rotation revealed the presence of seven components with eigenvalues ranging from 1.07 to 15.66, explaining a total of 77.88% of the variance. All factors were retained (see Table 4). Cronbach’s alpha for the scale was calculated at .95 and for the separate domains were as follows: Joy = .88, Security = .86, Autonomy = .85, Connectedness = .90, Meaning = .85, Identity = .87, and Growth = .80. Of the original 38 statements, six were eliminated due to cross-loading, resulting in 32 statements retained in the family tool.
Factor Analysis—Family Well-Being Assessment Tool.
Limitations
The study has limitations. The sample is not a random sample, and it was drawn from organizations that currently embrace the Eden Alternatives philosophy of care. Therefore, the results cannot be generalized to non-Eden Alternative organizations. In addition, some residents were interviewed by caregivers or trained interviewers, thus their responses may be biased. Although all responses were anonymous, employees and family members may have been biased due to fear of retribution or concern about the care of their loved one, respectively.
Discussion
The EAWBAT is showing promise as a measure of QoL for elders (resident), family members, and employees of long-term care environments. Measurement of well-being is the first step to initiating improvements that strengthen QoL for those associated with long-term care environments.
Given the current problems in employee satisfaction in long-term care environments and the high rate of employee turnover, tools used to design improvements in well-being and QoL could substantially affect the financial and human costs associated with working in long-term care environments. The improvement of relationships within long-term care organizations has the potential for lessening the suffering of family members who choose to place a loved one in their care. Improving the QoL of residents has numerous potential benefits to all who support their care.
The unique contribution of the EAWBAT is its focus on not only the resident but also the families and employees in long-term care environments. When all three assessment tools are evaluated together, it gives leaders concrete data about the well-being of the whole organization. Together, the results from the use of these assessment tools, along with the domains of well-being, has the potential to help organizations implement improvements that will lower employee turnover, strengthen relationships with families, and increase the overall QoL of the residents: in other words, improve the well-being of all.
Implications
Policy
With the increasing proportion of older adults in the population, nationally and internationally, researchers are becoming more focused on how society can care for the increasing numbers of frail elderly adults who require long-term care services. QoL and person-centered planning is becoming an area of focus for Health and Human Services Departments nationwide. The EAWBAT can contribute to knowledge-guiding policy development at the federal, state, and organization level.
Practice
Health care professionals including doctors, nurses, social workers, recreational therapists, and others can benefit from the results presented in this study to assess the well-being of the residents they serve. It is well documented, in the literature, that well-being affects all aspects of a person’s functioning. This applies to residents, family members, and employees. The EAWBAT can guide the development of best practices that strengthen well-being for residents, family members, and employees in the long-term care environment. Here are some examples of best practices based on the study results:
The EAWBAT can be used to measure a resident’s well-being on an ongoing basis to track how they adjust to their environment.
The EAWBAT can be used to measure an employee’s well-being on an ongoing basis. It is important for the employees to experience well-being in their work life as it influences their ability to provide QoL and quality of care for the residents they serve.
The EAWBAT can be used to assess a team’s well-being (residents, employees, and family members) periodically. This can provide leaders with important feedback about both the successes and opportunities to improve person-directed care approaches.
The domains of well-being and EAWBAT can be used to address resident issues. Some examples include the following: A resident is struggling with life in his or her home. Using the domains of well-being or the EAWBAT results, their caregivers can identify opportunities to better understand and meet the needs of the individual. The domains of well-being and EAWBAT results can be incorporated into the resident care (growth) plans.
Education
Results from the EAWBAT can be used to develop and enhance educational materials at the organizational level as well as influence education in the larger community.
At the organizational level, employee development specialists can incorporate the domains of well-being into in-service and training requirements for employees.
Employee development specialists can also use results from the EAWBAT to identify education and support needs of employees.
Conclusion
With the increasing proportion of older adults in the population, researchers focus on how society can care for the increasing numbers of frail elderly adults who require long-term care services. There has been growing interest in the QoL and well-being of older adults who reside in long-term care environments. The Eden Alternative is an initiative aimed at improving the QoL and well-being of long-term care residents.
Measurement of well-being is the first step to assessing improvements that strengthen QoL for those associated with long-term care environments. The unique contribution of the EAWBAT is its focus on not only the resident but also the family members and employees. Together, the results from the use of these assessment tools, along with the domains of well-being, has the potential to help organizations implement improvements that will deeply affect QoL in ways that have not been imagined yet.
Further research is needed to ensure that well-being and QoL are effectively evaluated for residents, family members, and employees in long-term care environments. Current evaluation tools focus heavily on quality of medical treatment, which is much easier to measure. To experience well-being, a balance between QoL and quality of medical treatment is essential. It is our hope that the EAWBAT can contribute to the body of knowledge surrounding well-being and QoL, thus improving the lives of residents, family members, and employees in long-term care environments.