Meaning in the Lives of Caregivers of Individuals With Parkinson s Disease

Transcription

1 Journal of Clinical Psychology in Medical Settings, Vol. 10, No. 1, March 2003 ( C 2003) Meaning in the Lives of Caregivers of Individuals With Parkinson s Disease Varda Konstam, 1,3 William Holmes, 1 Felicia Wilczenski, 1 Shanteri Baliga, 1 Jill Lester, 1 and Rebecca Priest 2 This study explores the contribution of finding meaning in general and finding meaning specific to caregiving as potentially important explanatory variables in predicting well-being in caregivers of individuals with Parkinson s disease. Fifty-eight caregivers of individuals diagnosed with Parkinson s disease were provided self-report questionnaires to assess well-being and meaning (general and specific). Results showed a significant proportion of the variance of positive affect (PASS) and negative affect (DYS) related to well-being, as assessed by the Multiple Affect Adjective Checklist Revised. Purpose and Existential Vacuum (two subtests of the Life Attitude Profile Revised used to assess general meaning) predicted well-being. Purpose predicted 41.8% of the variance related to PASS; Existential Vacuum predicted 30.8% of the variance related to DYS. Meaning related specifically to caregiving (Finding Meaning Through Caregiving Scale) did not explain any additional variance. Our results suggest that finding meaning, beyond meaning specifically associated with caregiving, is the key to understanding well-being among caregivers of individuals with Parkinson s disease. The positive construct of finding meaning in general can empower researchers and professionals working with caregivers to better understand the variability in caregiver outcomes as well as assess and intervene more effectively. KEY WORDS: caregiving; meaning; Parkinson s disease; well-being. INTRODUCTION Demographic change has resulted in family caregiving becoming a pressing social issue, with more than l5 million adults currently providing care to relatives (Schulz & Beach, 1999). The extensive literature on caregiving consistently documents the high psychological costs (Lee, 1999, 2001; Toseland et al., 2001). Caregivers are considered to be at risk for developing health problems, depression, anxiety, and for becoming socially isolated (Hooker, Monahan, Shifren, & Hutchinson, 1992; Kiecolt-Glaser, Dura, Speicher, Trask, & Glaser, 1991; Kiecolt-Glaser & Glaser, 1999; Noonan & Tennstedt, 1997). Not only 1 University of Massachusetts, Boston, Massachusetts. 2 Visiting Nurse Association, Rockland Massachusetts. 3 Correspondence should be addressed to Dr Varda Konstam, Graduate College of Education, University of Massachusetts, Boston, 100 Morrissey Building, Boston, Massachusetts, 02125; varda.konstam@umb.edu. does caregiving contribute to psychiatric morbidity, it is also an independent risk factor for mortality. Elderly caregivers who experience mental or emotional strain are more likely to die than noncaregiving controls (Schulz & Beach, 1999). Despite the objective indicators of caregiver stress, there is considerable variability in reactions to the demands of caregiving by the caregiver (Farran & Kuhn, 1998). Little is understood regarding why some caregivers fare well in response to the demands of caregiving, whereas others do not (Farran, Miller, Kaufman, Donner, & Fogg, 1999). Minimal attention has been given to identifying and operationalizing positive psychological resources and determining their contribution to caregiver wellbeing (Farran, Miller, Kaufman, & Davis, 1997). Although the caregiving literature is extensive, and the idea that a sense of meaningfulness is important to emotional well-being has been documented, the literature is remiss in addressing the significance of positive constructs such as finding meaning and its /03/ /0 C 2003 Plenum Publishing Corporation

2 18 Konstam, Holmes, Wilczenski, Baliga, Lester, and Priest potential salutary effects. Issues related to meaning are only recently receiving increasing attention from researchers (Baumeister, 1991; Emmons, 1986; Farran et al., 1999; Reker, 1997; Ryff & Singer, 1996). Preliminary findings suggest that the study of meaning has potential merit for both researchers and professionals working with caregivers (Farran, Keane-Hagerty, Salloway, Kupferer, & Wilken, 1991; Farran & Kuhn, 1998; Lawton, Moss, Kleban, Glickman, & Rovine, 1991; Pearlin, Mullan, Semple, & Skaff, 1990). To date, no studies have been reported that address an understudied population, caregivers of individuals with Parkinson s disease, and the impact of finding meaning in their lives. In addition, no study to date has systematically addressed and compared the significance of finding meaning specifically associated with caregiving, in comparison and complementary to the general construct of finding meaning. The focus of this research is to explore the contribution of finding meaning (general and specific) as potentially important explanatory variables in predicting caregiver well-being in caregivers of individuals with Parkinson s disease. It is hypothesized that finding meaning specific to caregiving and finding meaning in general will explain significant variation in caregiver well-being, as indicated by levels of negative affect (depression, anxiety, hostility) and positive affect. This study is consistent with current public policy initiatives that are targeted toward decreasing costs associated with formal health care and providing quality support for an informal care system. Positive constructs such as finding meaning (general and specific) can potentially empower researchers to better understand the variability in caregiver outcomes as well as empower personnel working with caregivers to assess and intervene more effectively (Farran & Kuhn, 1998). Review of the Literature Parkinson s disease, a chronic neurological condition, is characterized by tremors, slowness of movement, rigidity, and loss of balance (Frazier, 2000; Shifren, Hooker, & Nesselroade, 1997). Although a significant body of literature exists with respect to caregiving, little is known regarding (l) adaptation to Parkinson s disease; and (2) reasons for why some caregivers adapt and thrive under very demanding circumstances, while others report compromised wellbeing. Overall, there has been a dearth of studies that describe the experiences of caregivers of individuals with Parkinson s disease (Carter et al., 1998). Although the idea that a sense of meaningfulness is important to emotional well-being has been documented (Farran et al., 1991), the literature is remiss in understanding and comparing the significance of general and specific constructs associated with finding meaning in this population of caregivers. The construct, finding meaning through suffering, derives from an existential framework (Farran & Kuhn, 1998). Frankl (1963) believed that quality of life can be best maintained by fulfilling personal meanings. Once a potential meaning has been realized, it becomes part of one s past; the certainty of past meanings provides an antidote to the uncertainty of the future (Wong, 1998). It is not suffering but the failure to see meaning in suffering that causes people pain. Frankl (1963) advocates maintaining an attitude of acceptance, which in turn allows the individual to transform suffering into something meaningful. Meaning through caregiving is defined as holding positive beliefs about one s self and one s caregiving experience derived from perceived benefits or gainful outcomes associated with caregiving (Giuliano, Mitchell, Clark, Harlow, & Rosenbloom, 1990). Qualitative work (Farran et al., 1991, 1999) revealed that finding meaning in caregiving is a multidimensional construct consisting of three dimensions: feelings of loss/powerlessness, provisional meaning (making sense of the experiences through day-to-day events and attitudes), and ultimate meaning (finding meaning through connections with a higher power or sense of purpose). Farran et al. (1997) investigated the relationship between race, finding meaning, and caregiver depression and global role strain among 77 African American and 138 White spouse caregivers of persons with dementia. Inclusion of provisional meaning increased the explained variance in depression from 47 to 51%. Higher levels of provisional meaning were associated with lower levels of depression. Ultimate meaning did not significantly contribute to the model. There were no race differences with respect to the process by which stressors associated with caregiving and finding caregiver meaning influenced depression. Noonan and Tennstedt (1997) examined the relationship between meaning in caregiving and psychological well-being (depression, self-esteem, mastery, role captivity, and loss of self) in 131 informal caregivers to frail elders. Finding meaning in caregiving was negatively associated with depressive symptoms and positively associated with self-esteem, accounting for 2.9 and 3.3% of the variance respectively. Finding meaning in caregiving was not related to mastery,

3 Caregiving 19 role captivity, or loss of self as well as any of the objective caregiving stressors, that is extent of care performed, frequency of care, or the elders cognitive impairment and problem behaviors. A limitation of this study is that the caregivers in this sample were linked to a random sample of elders, diverse with respect to range of caregiving demands and potential presenting stressors. This study follows up and elaborates on our current understanding of meaning as it relates to the lives of an understudied population, caregivers of individuals diagnosed with Parkinson s disease. It is hypothesized that finding meaning in general and finding meaning specific to caregiving will be associated with well-being in caregivers of individuals with Parkinson s disease. METHODS Participants Fifty-eight caregivers, 21 of whom were male (36.2%) and 37 of whom were female, (63.8%) served as participants. The mean age was 66.6 years (SD = 8.9). Eighty nine percent of the caregivers were spouses; the remaining 11% were daughters of the individuals identified with Parkinson s disease. Participants were diverse with respect to educational level: 3.4% did not complete high school, 32.2% completed high school, 33.9% completed an Associate Degree and 30.5% completed college. Ninety four percent of the participants identified themselves as primary caregiver and 87.5% received no additional help from other caregivers. With respect to health status of caregivers, 15.3% reported their health to be poor, 33.9% reported their health to be fair, 23.7% reported their health to be good, and 22.1% reported their health to be excellent. The sample was diverse with respect to length of illness of individual with Parkinson s disease: up to 2 years, 10.4%; 3 years, 25%; 6 years, 33.3%; 10 years, 14.6%; 15 years, 8.3%; 20 years, 4.2%; 30 years, 4.2%. Range in severity of illness was reported: unilateral difficulty, 17.6%; bilateral difficulty, balance not impaired, 17.6%; bilateral, balance impaired, 41.3%; functionally disabled, 17.6%; and confined to bed or wheelchair, 5.9%. Measures The following assessment tools were provided to the participants in the study. Finding Meaning Through Caregiving Scale (FMTC; Farran et al., 1999) is designed to assess positive aspects and ways that individuals find meaning through their experience of caregiving. The 43-item Likert scale consists of three subscales: Loss/powerlessness, which identifies difficult aspects of caregiving (i.e., I miss the little things my relative and I did together in the past ); Provisional Meaning identifies how caregivers find day-to-day meaning (i.e., Caregiving makes me feel good that I am helping ); and Ultimate Meaning identifies philosophical/religious/spiritual attributions associated with the experience of caregiving (i.e., I believe in the power of prayers; without it I couldn t do this ) (Farran et al., 1999). Cronbach s alpha reliabilities are consistently high for the entire measure as well as each subscale (.88.95). The alpha coefficient for this study is.74. The measure has high concurrent and discriminant validity. Research indicates that this measure is useful for understanding why or how caregivers do well despite difficulties they encounter and to identify caregiver s strengths and areas for intervention (Farran et al., 1999). Life Attitude Profile Revised (LAP-R; Recker, 1992) measures the multidimensional construct of searching for and attaining meaning in one s life. It is a 48-item Likert scale consisting of six domains: Purpose (sense of direction in life), Coherence (integrated understanding of self and others), Existential Vacuum (lack of meaning and direction in life), Choice and Responsibleness (perceptions of personal agency and control), Death Acceptance (transcendence of fear of death), and Goal Seeking (desire for new challenges). Two additional composite scores, Personal Meaning Index [Purpose + Coherence) and Existential Transcendence Index [(Purpose + Coherence + Choice and Responsibleness + Death Acceptance) (Existential Vacuum and Goal Seeking)], can be generated. Concurrent validity has been established to be adequate for each of the LAP-R subscales (Recker, 1992). The scale, driven by Frankl s theoretical perspective, is easy to administer and score (Recker & Peacock, 1981). Alpha coefficients for the community and institutional elderly were.83 and.81, respectively (Recker, 1997). The alpha coefficient for this sample is.88. The Multiple Affect Adjective Check List R (MAACL-R; Zuckerman & Lubin, 1985), a checklist of 132 adjectives, assesses level of anxiety, depression, hostility, sensation seeking, and positive affect (Zuckerman & Lubin, 1985). The combined scores of anxiety (A), depression (D), and hostility (H) yield a

4 20 Konstam, Holmes, Wilczenski, Baliga, Lester, and Priest Dysphoria (Dys) score whereas the combined scores of positive affect (PA) and sensation seeking (SS) yield a PASS (Positive Affect and Sensation Seaking) score. All of the scales of the MAACL-R show adequate internal reliability with the exception of SS (Lubin et al., 1988). The highest internal reliabilities were reported on PA, Dys, and PASS scales (alpha coefficients.90 or greater). Alpha coefficients are equal to or exceeding.80 on the remaining scales, with the exception of SS (.74). The alpha coefficient for this study is.85. The validity of the MAACL-R has been well established with diverse clinical populations (Zuckerman & Lubin, 1985). Procedures The protocol, approved by the institutional review board of a large urban northeastern medical center, included completion of self-report questionnaires (FMTC, LAP-R, and MAACL-R). Written informed consent was given by each participant upon agreement to participate in the study. Caregivers were given the questionnaires by the researcher or her assistant during scheduled appointments with the physician. Participants were provided an addressed, stamped envelope with instructions to return the questionnaires to the first author upon completion. The rate of return was 88%. RESULTS Pearson correlation and stepwise regression analysis were used to identify predictors of outcomes for MAACL-R. Characteristics of the caregiver and her or his situation were first correlated with the MAACL-R items. These included demographic characteristics of the caregiver, perceived limitations imposed by caregiving, type of caregiving provided, and the availability of emotional support. The correlations are presented in Table I. Correlates were then entered in a backward stepwise regression to determine which predictors remained after controlling for other factors. The predictors were also checked for multicollinearity. Less than 40% of the variance of any variable was correlated with other predictors. The backward stepwise regression was employed to prevent correlated variables from usurping variance from other predictors, thus reducing the risk that correlated predictors will be excluded from the regression. The tolerance criteria for reentering variables was set to.50 to prevent collinear variables from reentering the regression. No variables were excluded using this criterion. Significance was judged using a two-tailed criterion of.05 for the correlations and a probability of.05 for the regression beta coefficient. All of the MAACL-R scales had significant predictors using these criteria. Table I. Correlations Between MAACL-R, LAP-R, FMTC Scales, and Caregiver Characteristics (N = 58) MAACL-R Positive Sensation Anxiety Depression Hostility affect seeking Dys PASS LAP-R purpose Coherence Death acceptance Existential vacuum Existential transcendence Personal meaning Choice/responsibleness FMTC loss/powerlessness Provisional meaning Total meaning Caregivers Caregiving limitations Type of caregiving Health comparison Emotional support Income Years of caregiving Age Education p <.05. p <.01.

5 Caregiving 21 Seven outcome variables were examined for the MAACL-R: Anxiety, Depression, Hostility, Positive Affect, Sensation Seeking, Dys, and PASS. Each of these was first correlated with the demographic characteristics of the caregivers, their caregiving situation, perceived health compared to peers, the availability of support, and items from the LAP-R and the FMTC. They were then entered in the stepwise regression analysis using a significance criterion of.05 for entering variables in the regression. Elevated Anxiety scores were correlated with Purpose, Death Acceptance, Existential Vacuum, Existential Transcendence Index, and Personal Meaning Index. The only caregiver characteristics correlated with Anxiety were perceived caregiver poor health in comparison to peers, perceived limitations associated with health difficulties of individual diagnosed with Parkinson s disease, and low availability of emotional support. When the correlates were entered in the regression analysis, the only significant predictors of Anxiety were the Existential Transcendence Index and Choice and Responsibleness scales (see Table II). These two variables alone predicted 36% of the variance in Anxiety. Depression was correlated with high scores of Loss/powerlessness, Existential Vacuum, life limitations as a result of caregiving, caregiver poor health compared to peers and low scores on Provisional Meaning, Total Meaning, Purpose, Personal Meaning Index, and emotional support. When these factors were entered in the regression analysis, Existential Vacuum and lack of availability of emotional support were the significant predictors. These two variables accounted for 37% of the variability in depression scores. Hostility was correlated with Existential Vacuum and Existential Transcendence Index as well as emo- Table II. Summary of Regression Analysis for Variables Predicting Well-Being (N = 58) Outcomes Predictors Beta R 2 Anxiety Existential transcendence,.71 choice responsibleness Depression Existential vacuum,.471 emotional social support.37 Hostility Existential vacuum Positive affect Purpose Sensation Seeking Purpose Dys Existential vacuum PASS Life purpose p <.05. p <.01. tional support, and caregiver poor health compared to peers. When the variables were entered in the regression analysis, Existential Vacuum was the only significant predictor. It predicted 27% of the variance in Hostility. No other factor was significant after controlling for this factor. Positive Affect was correlated with Loss/ powerlessness, Provisional Meaning, Total Meaning, Purpose, Coherence, Existential Vacuum, Personal Meaning Index, Existential Transcendence Index, emotional support, poor health of caregiver compared to peers, age, and level of education. When the correlates were entered in the regression analysis, Purpose was the only significant predictor. It accounted for 33% of the variation in Positive Affect. When Purpose was controlled, no other variable was significantly related to Positive Affect. Sensation Seeking was correlated with Loss/ powerlessness, Provisional Meaning, Total Meaning, Purpose, Coherence, Choice and Responsibleness, Personal Meaning Index, Existential Transcendence Index, level of education, income, years of providing care, and emotional support. In the regression analysis Purpose emerged as the only significant predictor. It was associated with 23% of the variance of Sensation Seeking. No other variable was associated with Sensation Seeking after controlling for Purpose. Dys had significant correlations with Loss/ powerlessness, Total Meaning, Purpose, Existential Vacuum, Goal Seeking, Personal Meaning Index, and Existential Transcendence Index, emotional support, and health problems of caregiver. Existential Vacuum was significantly associated with Dys in the regression analysis. It accounted for 30% of the variance of Dys. All other variables were not significant after controlling for Existential Vacuum. The correlation analysis indicated PASS was associated with Loss/powerlessness, Provisional Meaning, Purpose, Choice Responsibleness, Existential Vacuum, Personal Meaning Existential Transcendence Index, type of care provided, emotional support, age, and education. The regression analysis indicated that Purpose was the overwhelmingly significant factor associated with PASS. It accounted for 41.8% of the variance of PASS. No other variable was significant after controlling for Purpose. DISCUSSION The construct of finding meaning in general predicted well-being in caregivers of individuals with

6 22 Konstam, Holmes, Wilczenski, Baliga, Lester, and Priest Parkinson s disease. Meaning specific to caregiving did not explain any additional variance. Our findings demonstrate the importance of finding meaning in general, a construct that has been de-emphasized in the voluminous literature related to caregiving. Results predicted a consistently significant proportion of the variance related to both positive affect (PASS) and negative affect (Dys), as assessed by the MAACL-R. Purpose (LAP-R) predicted 41.8% of the variance related to PASS; Existential Vacuum (LAP-R) predicted 30.8% of the variance related to Dys. The way particular existential variables predicted well-being in our sample of caregivers is interesting. Results suggest the possibility of two independent pathways, positive and negative affect, to well-being. Purpose appears to be salient when considering pathways associated with positive affect, whereas Existential Vacuum, Existential Transcendence, Choice, and Emotional Support appear to be salient when considering pathways associated with negative affect. There is increasing evidence suggesting that the inclusion of measurement of positive affect, one s level of pleasurable engagement with the environment, and the extent to which one avows a zest for life can result in a more differentiated and richer understanding of the individual (Konstam, Hurley, Hijjazi, Perry, & Konstam, 1999; Ryff & Singer, 1996). Spiro, Aldwin, Ward, and Mroczek (1995) suggested that positive affect is an unrecognized and significant construct relevant to capturing and predicting disease course and outcome. Studies specific to caregiving suggest that positive affect is related to the use of positive reappraisal (Haley, Levine, Brown, & Bartolucci, 1989; Stephens, Norris, Kinney, Ritchie, & Grotz, 1988), problem-focused coping (Haley et al., 1996; Vitaliano, DeWolfe, Russo, & Katon, 1990) and receiving satisfaction from caregiving (Haley Levine, Brown, & Bartolucci,,1987; Lawton et al., 1991). Folkman (1997), on the basis of the work of Lazarus, Kanner, and Folkman (1980), suggests that in the context of intense caregiver distress, positive affect serves multiple functions: (l) breather and distractor from everyday stressors; (2) sustainer to enhance self-esteem and feelings of effectiveness; and (3) restorer, that is, assisting individuals to feel connected and cared about. Purpose, as assessed by the LAP-R, was associated with 33% of the variance for Positive Affect and 23.2% of the variance for Sensation Seeking. For the two combined subtests, PASS, 41.8% of the variance was explained by Purpose. These results suggest that existential paradigms that address the significance of finding purpose enhance our understanding of well-being in caregivers, findings supported by Reker (1997). Similarly, Lukas (1998) found that meaning and purpose in life can provide inner calm and composure as well as contribute to the belief that life is unconditionally worth living. Our results suggest the possibility that the domains identified by Recker (1992) are primarily associated with specific features related to negative and positive affect. For example, Depression is associated with Existential Vacuum, a finding that may suggest, upon further replication, therapeutic avenues to pursue above and beyond traditional intervention strategies proposed for caregivers presenting with depressive features. Our findings highlight the need to further explore the existential concerns of caregivers of individuals with Parkinson s disease, specifically with respect to their saliency in ameliorating feelings of hostility, anxiety, and depression in caregivers. Existential Transcendence appears to be a significant construct when considering caregiver well-being, particularly as it relates to anxiety. Meaning comes from transcending self-interests, reaching out beyond oneself and engaging in activities for the purpose of others (Fabry, 1995; Wong, 1998; Yalom, 1980). Wong (1993) found that self-transcendence is the best predictor of well-being in the elderly. Frankl (1963, 1967, 1978) asserts that persons create meaning by making choices. Our findings suggest that choice is associated with anxiety for our caregivers. Choices are expressed through the attitudes individuals assume and the responsible behaviors they demonstrate. Farran and Kuhn (1998) report that caregivers who resist powerlessness and despair do so in part by making a conscious choice to look at things differently, choosing to assume a positive mental attitude. Assessment and discussion of how caregivers make choices and assume responsibility appears to have relevance when considering wellbeing. Farran and Kuhn (1998), referring to caregiving choice, suggest the following: Caregivers who are most successful in finding provisional meaning creatively restructure their attitudes toward caregiving, primarily by adopting positive mental attitudes. They discover what Frankl (1963) described as the last of the human freedoms the ability to choose one s attitude in a given set of circumstances. (p. xiii) Finding meaning specific to caregiving (FMTC) did not explain any additional variance related to

7 Caregiving 23 well-being (LAP-R). Our results do not support the findings of Farran et al. (1997) and Noonan and Tennstedt (1997) in which finding meaning specific to caregiving did explain a small percentage of the variance associated with well-being (2.9 4%). However, the above two studies did not address the contribution of finding meaning in general. In addition, participants were caregivers of individuals diagnosed with dementia (Farran et al., 1997) or frailty (Noonan & Tennstedt, 1997). Future studies are needed to gain greater clarity with respect to the unique and combined contributions of finding meaning in general and finding meaning specific to caregiving, as they apply to specific population of caregivers. Implications for Intervention The current emphasis in caregiver interventions has underemphasized constructs that may be relevant and empowering in working with caregivers of individuals with Parkinson s disease. The caregiving literature primarily focuses on assisting caregivers to develop coping strategies and solutions that address day-to-day events associated with caregiving. What appears to be relatively ignored is emphasis on existential constructs such as providing meaning to caregivers. Currently, caregivers are taught to disengage from the stressful and painful experience of caregiving, to find inner peace, for the purpose of regaining coping skills needed to deal with the demands of daily life as a way of maintaining health and wellbeing (Ryff and Singer, 1998)....However, it is equally essential to develop intervention programs designed to foster investment in living, commitment to goals and pursuits, engendering sense of meaning (Ryff and Singer, 1998, p. 229). When facing a challenging life experience such as caring for an individual diagnosed with Parkinson s disease, individuals are given an opportunity to fulfill...the deepest meaning the meaning of suffering (Frankl, 1967, p. 15). Lantz and Gomia (1995) provide clinical guidelines for the practitioner working with older adults that can be helpful to personnel working with caregivers of individuals with Parkinson s disease. They suggest that difficulties and symptoms emerge when the individual is not able to identify and make use of the meanings and meaning potential to be found in daily life (p. 31). LIMITATIONS AND CONCLUSIONS There were several methodological limitations to the study s findings. Our findings were based exclusively on self-report questionnaires. Telephone or inperson interviewing would likely enrich our data set. In addition, our study would have been enriched by information provided by the individuals diagnosed with Parkinson s disease, as well as individuals involved in the dyad s social network. Our participants had a vested interest in being viewed in a positive light by medical personnel in charge of their care, possibly favoring a more positive assessment of their caregiving situation. Replication studies with larger samples, diverse with respect to cultural, racial, and educational demographics, are needed. Our findings may be limited with respect to generalizability, given that our participants were caregivers of individuals who received their care in an urban medical center known for cutting edge medical interventions associated with this disease. A larger sample would provide the opportunity to analyze the data by gender, an analysis which may have enhanced the findings of the current study. Finally, provision of a more comprehensive data set with respect to physical indicators associated with the caregiver would have enriched our study. Our results highlight the salience of personal meaning in the lives of caregivers of individuals with Parkinson s disease. They suggest further exploration of the need for a paradigm shift, a shift that addresses both meaning systems and coping strategies when working with caregivers of individuals with Parkinson s disease. Our results also suggest that finding meaning, beyond the specific meaning associated with caregiving, is key to understanding well-being among caregivers of individuals with Parkinson s disease. Assessment of personal meaning can better inform intervention strategies particularly with respect to both positive and negative outcome variables (i.e., positive affect, depression). Practitioners can assist caregivers in clarifying meaning and growth from stressful encounters, especially those that are unavoidable and uncontrollable (Stephens et al., 1988, p. 209). This study is potentially useful with respect to theoretical, clinical, and public policy issues. By providing additional clarity regarding the concept of finding meaning through caregiving (general and specific), clinicians, mental health personnel, leaders of caregiver support groups and other professionals serving caregivers can assist caregivers in both

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