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Home > RNJ > 2006 > July/August > Life Purpose: Effect on Functional Decline and Quality of Life in Polio Survivors

Life Purpose: Effect on Functional Decline and Quality of Life in Polio Survivors
Tracie C. Harrison, PhD RN CS FNP • Alexa K. Stuifbergen, PhD RN FAAN

This article explores the protective effects that finding a purpose in life has on the level of physical and mental impairment and overall quality of life. Results were gathered from a national sample of 2,153 polio survivors. Although the combined social and physical experience of living with the disabling effects of polio has been associated with accelerated aging due to an increased allostatic load, finding a purpose in life may diminish these effects. The findings of this study indicate that purpose in life is associated with less perceived decline in health. Moreover, purpose in life is predictive of better quality of life despite levels of physical and mental impairment. Rehabilitation nurses should consider ways to help persons with polio maintain activities and interests that promote their sense of purpose in life.

Aging with the effects of a permanent disability has been a challenge for many polio survivors. Approximately 640,000 people in the United States have some degree of impairment related to polio (March of Dimes, 2001). Many have worked hard to participate fully in society, which has affected their health (Harrison & Stuifbergen, 2005). Researchers report that secondary conditions and comorbidities are well above the national rate in people living with the effects of polio (Campbell, Sheets, & Strong, 1999; Harrison & Stuifbergen, 2001). The cumulative stress from pushing their bodies as they age with a disability has been reported as consistent with explanations provided by the combined disablement process and allostatic load models (Harrison & Stuifbergen, 2001). The effects of long-term stress, however, may be reduced by having a positive psychological outlook (Frankl, 1984; Ryff & Singer, 1998; Taylor, 1983).

This article explores the protective effects of finding a purpose in life for aging polio survivors. Finding a purpose in life is associated with physical limitations, symptoms of depression, and quality of life; thus a greater purpose in life is associated with less physical decline. This study aims to find that purpose in life will predict better quality of life beyond the effects of physical impairment and depression.

Theoretical Framework

This study used the allostatic load model (McEwen & Steller, 1993) to explain increasing levels of physical impairment over time in polio survivors (Harrison & Stuifbergen, 2001). Allostatic load is the neuro humoral mechanism responsible for the body’s reaction to stressful stimuli experienced over time. The degree of allostatic load is relative to the perceived level of adversity lived with over the course of a life. The body’s cumulative reaction to adversity can create physiologic damage after years of coping (McEwen & Steller, 1993), which may present as pathology consistent with, for example, hypertension, depression, anxiety, or coronary artery disease.

This study considered that the continual stress of trying to fulfill societal roles in an environment that creates barriers to the performance of those roles could result in mental or physical impairment due to long-term physiological responses to stress that, over time, result in impairment (McEwen & Steller, 1993).

Literature Review

Polio survivors have aged with continual stressors related to disability. As polio survivors have aged, many have reported age-related muscular weakness, pain, and fatigue. In fact, 28%–40% of polio survivors have been diagnosed with post polio syndrome (Halstead, 1998). Post-polio syndrome results in decreased mobility (Willen & Grimby, 1998), a new need for ambulatory and ventilatory aids (Macdonald, Gift, Bell, & Soeken, 1993), difficulty dressing, a new need for personal assistance, and a change or cessation in occupation (Jubelt & Cashman, 1987). Polio’s impact entails more than the residual effects of the initial infection; for many survivors, the effects of polio accumulated throughout their lives.

Different psychological responses to stressors may have multiple influences on the body and different subsequent forms of secondary conditions (Friedman & Booth-Kewley, 1987). The direction of association between psychological response and health is difficult to determine (Weibe & Smith, 1997). Despite these considerations, purpose in life may be a significant predictor of health and quality of life. Ryff (1989) investigated the perceived contributors to mental health in older people and reviewed the literature to formulate six dimensions of well-being in aging adults, one of which was having a purpose in life. Ryff and Singer (1998) proposed a model that theorized that a person’s ability to find a purpose in life might decrease stress (allostatic load) and the subsequent amount of physical and mental impairment that a person accumulates over time. They developed a model in which purpose in life was a protective factor that accounted for positive mental and physical functioning across the life course.

The ability to find a purpose, which occurs throughout life for different life events, may provide physical and psychological benefits. For example, in a study of 300 elderly people, meaning in life was defined as a sense of purpose, intelligibility, and manageability and was associated with continued family contact, higher self-esteem, and better reported health (Sarvimaki & Stenbock-Hult, 2000). Finding a purpose in life is important to health as people age. When an elderly person loses the ability to feel useful, they may lose some satisfaction with life. According to Mossey (1995), people who lose a sense of purpose in life are more likely to rate their health worse. Poorer self-rated health is associated with higher mortality. Finding a purpose in life has a protective physiologic mechanism, possibly through one of four pathways to health—sympathetic adrenomedullary, pituitary adrenocortical, peptide communication system, or the immune system—or it may be due to an interaction between all four (Friedman & Booth-Kewley, 1987). These pathways are consistent with the neurohumoral stressor mechanisms that may increase allostatic load (McEwen & Stellar, 1993).

Because people with impairments who were disabled as children can now expect to live well into their 60s and 70s (Kemp & Krause, 1999), factors that promote their health as they age, such as finding a purpose in life, should be investigated. For purposes of this study, the following research questions were asked: (1) What is the relationship between variables related to purpose in life, later life physical limitations, depression, and quality of life in persons aging with the effects of polio; (2) do polio survivors who report a high ability to find a purpose in their lives report less perceived physical decline; and (3) does purpose in life predict quality of life despite factors related to depression and physical limitations?

Methodology

This secondary analysis uses survey data from a national study of 2,153 polio survivors originally recruited to evaluate health, promoting behaviors and quality of life of people with chronic disabling conditions (Stuifbergen, Seraphine, Harrison, & Adachi, 2005). Descriptive statistics, Pearson correlation, multiple regression, and independent sample t tests were used to analyze the data.

Following approval of the local institutional review board, this sample was recruited for the original study (Stuifbergen et al., 2005) in 2000 through the Gazette International Networking Institute (GINI), an informational group for polio survivors. GINI sent out a description of the study to its members and asked anyone interested to return the stamped reply letter to the research office. Packets were sent to each individual who indicated a willingness to participate. Of those who demonstrated an interest (2,302 persons with a history of polio), 2,153 (93%) returned useable questionnaires. Their responses were entered into SPSS 10.0 for statistical analysis. Each person who completed a questionnaire was sent a $10 money order and a handwritten thank you note. Participants’ privacy was protected through coded questionnaires that remained in a securely locked area.

The questionnaire contained 11 instruments; for this analysis, the five instruments described below were used to understand the research questions.

Demographic Data

A background information sheet was used to collect data on a variety of demographic and disease characteristics. This information was used to describe the sociodemographic characteristics of the sample. Age, ethnicity, educational status, marital status, and employment status were obtained on the background information sheet.

Functional Decline

Functional decline was measured with one item from the Wellness for Women with Polio Program, University of Michigan Medical Center (Tate, 1996), they asked, “During the past 5 years, how much decrease have you experienced in your ability to carry on your normal activities of daily living—compared with your physical best?” This item was scored from 1 (none) to 7 (a great deal).

Physical Limitations

The Incapacity Status Scale (ISS; Kurtzke, 1981) was used to provide information specific to functional limitation and severity of major symptoms present in participants who had polio. It is a 16-item scale with scores ranging from 0 to 64 that assesses degree of function in certain activities such as bathing, dressing, and walking. It is scored from 0 (no difficulty) to 4 (complete dependence or loss of control). Internal consistency (Cronbach alpha) in this present study was 0.81. This scale was originally developed and validated for use with persons with multiple sclerosis and was found to have construct validity in this polio population. For this study, items were reduced to 15 after being reviewed by two expert consultants. All items except one were judged to be valid for the functional limitations experienced by polio survivors, and it has been used successfully in a pilot study of people who had polio (Harrison & Stuifbergen, 2001). Functional limitation is defined as the process of not being able to perform common tasks.

Depression

Depressive symptoms were assessed using the Center for Epidemiological Studies Depression 10-item scale (CESD-10; Andresen, Malmgren, Carter, & Patrick, 1994; Radloff, 1977). This 10-item scale is used to assess the degree of depressive symptoms over the past week. It includes items such as, “I was bothered by things that usually don’t bother me.” Scores range from 0–30; higher scores indicate a higher degree of more depressive symptoms. The CESD-10 is not designed to diagnose clinical depression; when it is used as a screening tool, the cutoff score is greater than or equal to 10 (Andresen, 1994). The reliability of this scale was 0.83 (Cronbach alpha) in this study.

Purpose in Life

One item from the Health Promoting Lifestyle Profile II (HPLP II) was used to measure purpose in life (Walker, Sechrist, & Pender, 1995). The questionnaire asked how regularly the person engages in certain behaviors. Specifically, one item asked if respondents, “believe that their life has purpose.” This item could be answered never, sometimes, often or routinely. This item was scored 1–4 and used for analysis involving quality of life; however, it was changed to a dichotomous variable for group comparisons; responses of never and sometimes were combined and scored as 1, and responses of often and routinely were combined and scored as 2.

Quality of Life

The Quality-of-Life Index (Ferrrans & Powers, 1985) was used to measure variables known to contribute to the multidimensional concept of quality of life as well as saliency to the individual. Each person was asked to respond to questions in part A regarding their satisfaction with the item on a 6-point scale, and then to answer the importance of the item in part B, also on a 6-point scale. The highest scores are those that indicate high importance and high satisfaction. The reliability of the scale for this population was 0.95 (Cronbach alpha).

Results

The majority of respondents are retired (38%), married (66%), female (69%), and White (98%), with a mean age of 62 years. The participants of this study are also highly educated—more than 50% have a college degree. Over 38% are retired, 20% work full time, and 21% are unemployed due to disability. Most participants were 2 years old when they were infected with the poliovirus, but the range is less than 1 month to 41 years. Participants have lived with the effects of the poliovirus for a mean of 54 years.

Physical impairment was frequent among those surveyed. Scores on the ISS ranged from 0–46 with a mean of 14.53. Scores for the least amount of limitation are presented in Table 1, which presents a partial list of responses given for those with the least amount of limitation. Twenty-three percent of participants reported they used stairs without a mechanical lift, and 9% had to have assistance or be bathed by another person. Thirty-one percent reported to have frequent problems with bladder control and over 16% reported frequent to occasional loss of bowel control. The majority of participants (73%) reported that they have a medical condition that requires maintenance, and 36% reported some degree of speech or hearing impairment. Thirty-five percent reported fatigue severe enough to interfere with prolonged activity.

The relationship between purpose in life, later life physical impairment, depression, and quality of life in persons aging with the effects of polio

The results of Pearson correlations are presented in Table 2. Mental impairment (depression) is negatively correlated with quality of life (–.56, p < .001) and purpose in life (–.21, p < .001), but positively correlated with physical impairment (.32, p < .001). Quality of life is positively correlated with purpose in life (.46, p < .001) and negatively correlated with physical impairment (–.44, p < .001), and impairment had a slightly negative correlation with purpose in life (–.12, p < .001).

Polio survivors who report a high ability to find purpose in their lives report less perceived decline in their physical condition

Using the dichotomous form of the variable of purpose in life, the two groups of participants who reported high versus low levels of purpose in life were compared based on their perceived level of functional decline. Because of a failure to meet the assumption of equal variances demonstrated by a significant Levene’s test, the results are reported for unequal variance, which is a stricter test of the data (Pallant, 2001). Functional decline is significantly higher, t (699) = 4.81, p < .001 for those with low purpose (M = 5.76, ± 1.34) compared with those with a high purpose (M = 5.41, ± 1.45).

Purpose in life predicts high quality of life despite factors related to mental and physical impairment

This research question was tested with hierarchical multiple regression using the ISS, CESD-10, purpose in life, and the Quality of Life Index. All assumptions were met prior to analysis. Table 3 presents the correlations, the standardized regression coefficients (beta), the R2 change (sr2), R2, adjusted R2, R, and mean scores with standard deviations for each variable.

After step 1, with ISS scores and CESD-10 scores entered into the equation, R2 = 0.38; F (2, 2145) = 6,444.47; p < .001. After step 2, with all independent variables entered into the equation, R2 = 0.49; F (3, 2145) = 683.39; p < .001. The addition of purpose in life to the equation provided a significant increase in R2. Even when controlling for the variance accounted for by ISS and CESD-10, purpose in life was a significant predictor of quality of life for persons who survived polio (R2 change = 0.11).

Discussion

Results from this study must be interpreted with caution because of the use of self-report data and the highly selective sample of mostly White, educated, retired women. Findings indicate a high level of physical limitations and depression that create concern about the need for care in the community. Nurses working with polio survivors may be prepared to recommend interventions to decrease the accumulation of a high allostatic load and prevent further mental and physical decline. Nurses might work with polio survivors to identify and eliminate barriers in their environment that make access to buildings and needed health services difficult. They may also recommend assistive devices that make mobility and access easier on the body over time, thereby decreasing the cumulative stress of living with a disability. For example, this might include the use of electric wheelchairs to prevent overuse of joints or making sure that clinics and hospitals use adjustable exam tables and wide automatic doors. Interventions to prevent decline over time are needed despite the inability to cure an initial impairment.

The findings from this study were consistent with Ryff and Singer’s (1998) discussions of purpose in life and physical and mental impairment; however, a study using a scale such as the Purpose in Life Test (Crumbaugh & Maholick, 1964) is advised to provide more variation within the measure and allow for more sensitive statistical analysis. The one-item questionnaire did result in a significant negative correlation with physical limitations and depression, however, the correlations were not high. Those who reported high purpose in life have significantly lower perceived declines in function.

This study supports the hypothesis that purpose in life predicts quality of life when the effects of physical limitations and depression are controlled. The total model predicted 49% of the variance associated with quality of life. Purpose in life was the second largest predictor, after depression. Purpose in life as a single-item assessment accounted for 11% of the variance when functional limitations and depression were controlled. This indicates that purpose in life should be investigated further in the lives of people aging with disabilities. Some impairment cannot be cured; therefore, ways to promote quality of life are needed, which is where many nurses can focus attention.

Work has been reported as one activity that has provided a purpose in life for people with disabilities (Stuifbergen & Rogers, 1997). Although most may be unemployed or placed into low-paying service-sector jobs (Gerschik, 2000), work has been found to be an important source of meaning for persons with disabilities (Stuifbergen & Rogers, 1997). In a study that investigated the meaning of work for persons with disabilities, work was found to provide independence and balanced dependence associated with the disability (Conyers, Koch, & Szymanski, 1998). Moreover, people with disabilities who work develop skills in negotiating, accommodating, and becoming more assertive as the time after the initial disabling event increases (Conyers et al., 1998). Characteristics of work that provide people with a purpose in life should be investigated further; however, some jobs, such as those subject to lay-offs or characterized by low status, may actually have deleterious effects (Ross & Sastry, 1999).

Therefore, nurses should first assess if the person’s employment provides them with a purpose in life. Nurses should then work with employers or community resources to help persons aging with the affects of polio maintain their jobs, if the job provides them a purpose in life. For example, one resource for nurses is the Job Accommodation Network (JAN). JAN is an Internet resource for nurses and anyone who wants to help patients with disabilities adapt to their functional impairments when they need accommodations to remain employed. This Internet site is set up to provide examples of reasonable accommodations that may be useful to employers and employees (www.jan.wvu.edu). Nurses may also contact their local or state vocational rehabilitation programs to facilitate the provision of job retraining for people who desire to remain employed but cannot remain in their present positions.

The experiences of living with the effects of disabling conditions have been described as a process of accelerated aging due to high rates of secondary conditions and comorbidities at an earlier-than-expected rate (Campbell, Sheets, & Strong, 1999). The process by which people become increasingly disabled can be explained using the combined disablement model of allostatic load (McEwen & Steller, 1993). Finding a purpose in life, however, may diminish the allostatic load that accumulates over time and leads to ill health (Ryff & Singer, 1998). This study supports the work of Ryff and Singer by confirming that purpose in life is associated with fewer perceived declines in health and is predictive of a better quality of life despite levels of physical limitation and depression.

Acknowledgments

This project was supported by the National Institute of Nursing Research, National Institutes of Health. This work was completed with support provided by the John A. Hartford Foundation, Building Academic Geriatric Nursing Capacity Scholar Award.

About the Authors

Tracie C. Harrison, PhD RN CS FNP, is an assistant professor at BAGNC Hartford and an Atlantic Post-doctoral Scholar, School of Nursing, University of Texas–Austin. Address correspondence to her at PO Box 344, Thorndale, TX 76577 or tharrison@mail.nur.utexas.edu.

Alexa K. Stuifbergen, PhD RN FAAN, is a professor and associate dean for research at the School of Nursing, University of Texas.

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