© 2014 American Psychological Association 0893-3200/14/$ 12.00 http://dx.doi.org/10.1037/a0037847
Journal of Family Psychology 2014, Vol. 28, No. 5, 728-734
BRIEF REPORT
Benefit Finding and Relationship Quality in Parkinson’s Disease: A Pilot Dyadic Analysis of Elusbands and Wives Shahrzad Mavandadi
Roseanne Dobkin
Philadelphia VA Medical Center, Philadelphia, Pennsylvania and University of Pennsylvania
Rutgers-Robert Wood Johnson Medical School
Eugenia Mamikonyan
Steven Sayers
University of Pennsylvania
Philadelphia VA Medical Center, Philadelphia, Pennsylvania and University of Pennsylvania
Thomas Ten Have
Daniel Weintraub
University of Pennsylvania
Philadelphia VA Medical Center, Philadelphia, Pennsylvania and University of Pennsylvania
Parkinson’s disease (PD) significantly impacts both patients’ and spouses’ emotional and physical health. However, despite the im portance of social relationships for wellbeing, few studies have examined relationship quality and their correlates in individuals with PD and their partners. Specifically, no known studies have exam ined the association between benefit finding, or the experience o f personal growth and other positive changes in the face o f a stressor, and perceived marital quality. To address these gaps in the field, 25 married couples participated in a cross-sectional, pilot study. Patients were veterans diagnosed with idiopathic PD receiving care at the Philadelphia VA M edical Center. Each patient and spouse independently com pleted self-reported measures o f sociodem ographics, physical and mental wellbeing, caregiver burden, marital quality, and perceived benefits associated with having PD. A ctorpartner interdependence m odels revealed that, after adjusting for covariates, greater perceived benefits from either having PD or living with a spouse with PD was associated with greater marital quality, both for that individual and their partner. Thus, perceiving positive consequences, such as personal growth, as a result o f personally having PD or living with a spouse with PD is related to greater marital quality for both members of the marital dyad. Findings may inform individual and couples-based interventions that address the value of benefit finding and incorporate other techniques of positive reappraisal.
Keywords: chronic disease, Parkinson’s disease, marital relationship, psychosocial support systems caregiving
Parkinson’s disease (PD)—a chronic, progressively debilitating condition characterized by complex motor and nonmotor symp toms— has a significant impact not only on patients, but also on their spouses or partners. The fact that the majority of individuals
with PD are cared for by informal spousal caregivers underscores the value in identifying and exploring factors that may account for the interrelationship between spouse and patient wellbeing. Past studies of patients with PD and their partners have focused mainly
This article was published Online First Septem ber 1, 2014. Shahrzad Mavandadi, Mental Illness Research, Education and Clinical Center, Philadelphia VA Medical Center, Philadelphia, Pennsylvania, and Department of Psychiatry, Perelman School o f Medicine, University of Penn sylvania; Roseanne Dobkin, Department of Psychiatry, Rutgers-Robert Wood Johnson Medical School; Eugenia Mamikonyan, Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania; Steven Sayers, Mental Illness Research, Education and Clinical Center, Philadelphia VA Medical Center, and Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania; Thomas Ten Have, Center for Clinical Epidemi ology and Biostatistics, University of Pennsylvania; Daniel Weintraub, Mental Illness Research, Education and Clinical Center, Philadelphia VA Medical
Center, Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania, and Parkinson’s Disease Research, Education and Clinical Cen ter, Philadelphia VA Medical Center. This work was supported by the Philadelphia VA Medical Center’s Parkin son’s Disease Research, Education, and Clinical Center (PADRECC) Pilot Award from the U. S. Departm ent o f Veterans Affairs. The content of this article does not reflect the position or policy of the Department of Veterans Affairs or the United States government The authors have no financial conflicts of interest to report. Dr. Ten Have sadly passed away in May of 2011. Correspondence concerning this article should be addressed to S hahrzad M avandadi, 3900 W oodland A venue, 116A, P hiladelphia, PA 19104. E-m ail: S hahrzad.M avandadi@ va.gov
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BENEFIT FINDING AND PARKINSON’S DISEASE
on the bidirectional associations among factors like PD duration, physical functioning, and psychiatric comorbidity and caregiver mood, burden, and quality of life (Caap-Ahlgren & Dehlin, 2002). However, PD is associated with a variety of factors (e.g., commu nication difficulties, impaired sexual functioning, mood distur bance, and social anxiety) that have the potential to strain social relationships and increase interpersonal distress and withdrawal (Miller, Noble, Jones, Allcock, & Burn, 2008; Schrag, Hovris, Morley, Quinn, & Jahanshahi, 2003; Wielinski, Varpness, Erickson-Davis, Paraschos, & Parashos, 2010). For example, in dividuals with PD and their romantic partners often must adapt to disruptions in family roles and responsibilities, loss of employ ment, and stigmatization due to motor and nonmotor complications (Schrag et al., 2003). Couples also often have to adapt to increas ing disability, falls, and psychiatric symptoms caused by PD, such as depression, hallucinations, and delusions (Schrag, Hovris, Mor ley, Quinn, & Jahanshahi, 2006). Interpersonal distress, in turn, has been shown to predict greater health dysfunction, hypokinesia, and inhibited response to levodopa treatment among those with PD (Backer, 2000; Greene & Griffin, 1998; Singer, 1976). The importance of understanding the mechanisms underlying interpersonal functioning among couples dealing with PD is fur ther highlighted when viewed in the context of the vast literature on the impact of the marital relationship on health and wellbeing in general. Supportive social ties yield numerous emotional, tan gible, and instrumental benefits, thereby helping to buffer stress, enhance psychological wellbeing, and attenuate declines in health (Cohen & Wills, 1985; Seeman & McEwen, 1996; Uchino, Cacioppo, & Kiecolt-Glaser, 1996). Conversely, negative interactions or interpersonal stressors, which may involve critical or insensitive behavior, unwanted advice, resentment, and rejection, can lead to social withdrawal and distress for both members of the relationship dyad (Newsom, 1999; Newsom, Nishishiba, Morgan, & Rook, 2003). Despite changes in interpersonal functioning among indi viduals with PD and their partners and the significant impact of the marital relationship on health and wellbeing, a paucity of research has examined marital quality among individuals with PD and their partners (Carter et al., 1998; Tanji et al., 2008; Wielinski et al., 2010), and even fewer studies have examined correlates of rela tionship functioning in PD. One factor in particular that has not received attention in the PD literature despite its association with outcomes among other pa tient populations is the role of benefit finding in influencing relationship quality. Benefit finding occurs when patients and/or significant others experience personal growth or positive changes after being faced with a challenging or stressful circumstance (e.g., PD; Kim, Schulz, & Carver, 2007). Finding benefit in response to a stressful situation can be manifest in numerous ways, including spiritual and personal growth, developing greater empathy for others, having a greater appreciation for life, and reprioritizing life goals. Studies with patient populations (e.g., patients with cancer, multiple sclerosis) suggest that benefit finding is associated with better adjustment and fewer negative outcomes (e.g., depressive symptoms; Kim et al., 2007). For example, in longitudinal work with patients with multiple sclerosis, benefit finding has been shown to predict psychological wellbeing (Pakenham, 2005). Moreover, family caregivers of patients with cancer who report experiencing benefits in terms of developing a greater acceptance of things and appreciation for life also report greater adaptation
729
and psychological adjustment (as measured by life satisfaction and depressive symptoms; Kim et al., 2007). Although the work outlined above has made a significant con tribution to our understanding of the association between benefit finding and wellbeing among patients and caregivers, it has fo cused primarily on either the patient or caregiver alone. Very few studies have examined the association between benefit finding and outcomes such as dyadic adjustment and marital quality among both relationship partners. Further, to our knowledge no studies have examined these factors among couples facing PD. This gap in the literature is notable given that those who report finding benefit in the face of a stressor also conceptualize the benefits gained in terms of positive changes in interpersonal functioning, improve ments in personal resources and skills, and strengthening of social ties, all of which have a direct impact on factors such as marital quality (Davis, Nolen-Hoeksema, & Larson, 1998). In one of the only studies to employ a dyadic design, Mock and Boerner (2010) found that among patients facing amyotrophic lateral sclerosis and their caregivers, couples where neither member perceived benefits experienced significantly greater depressive symptoms than those where at least one member of the dyad perceived benefits from having the disease (Mock & Boerner, 2010). Such findings high light the value of further examining the association between ben efit finding and not only psychological health, but also marital quality among both patients with PD and their spouses. To our knowledge, no study has looked at the association between benefit finding and perceived relationship quality among couples experiencing PD. Thus, to build upon findings from pre vious studies, the current study sought to examine the association between perceived benefit finding and marital quality among dy ads of individuals with PD and their spouses. We hypothesized that after controlling for other factors (e.g., depressive or anxiety symptoms, overall life satisfaction), both one’s own perception of benefits stemming from PD as well as their partner’s perception of benefits would be positively associated with relationship quality. Study findings may help to inform the development of clinical interventions and health care delivery models for people with PD and their family members.
Method Participants and Procedures Twenty-five PD patient/spouse dyads participated in the crosssectional pilot study. Specifically, the sample included 25 veterans (18 years of age and older) diagnosed with idiopathic PD by a movement disorders specialist and receiving routine clinical care at the Philadelphia VA Medical Center’s Parkinson’s Disease Research, Education, and Clinical Center (PADRECC). Prior to participant recruitment, study staff met with PADRECC clinical staff and provided a detailed overview of the project’s aims, procedures, and inclusion/exclusion criteria. Clinical staff were asked to refer potentially eligible participants to the PI and/or research coordinator. Veterans’ spouses also were recruited and enrolled. Couples were recruited for participation in the study if they reported having lived together for at least 1 year prior to study commencement and if they were willing and able to provide written informed consent. Couples with the following characteris tics were excluded: (a) hearing, visual, or other physical impair-
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merits leading to difficulty with informed consent process and/or assessment; (b) moderate-severe cognitive impairment, defined by a Mini-Mental State Examination (MMSE) score < 20 (Folstein, Folstein, & McHugh, 1975); (c) history of bipolar disorder, schizo phrenia, schizoaffective disorder, or dementia other than second ary to PD (patient only); and (d) unstable medical disease or active neurological disease other than PD (patient only). A total of 33 veterans and their spouses/partners were approached for the proj ect. Of those, seven couples refused participation and one couple was ineligible due to the veteran meeting criteria for moderatesevere cognitive impairment (MMSE score = 17). Upon providing consent, members of each couple independently completed an assessment battery that included standardized, well validated measures of sociodemographic variables, physical and mental wellbeing, relationship functioning, and caregiver burden. Each interview took approximately 2 hr to complete. All study procedures were approved by the Philadelphia VA Medical Cen ter’s Institutional Review Board (IRB). Table 1 presents a summary of patients’ and spouses’ sociode mographic and background characteristics. Although there were few significant differences between patients and their spouses, spouses were significantly younger (p < .001), more likely to be employed (p = .04), and more likely to report greater benefit from PD (p = .03) relative to patients.
Measures Patients and their spouses completed a battery of widely used scales that have evidenced acceptable to excellent internal consis tency; the coefficient alphas reported for each scale are based on the current sample.
Key study variables. To statistically model the influence of benefit finding on perceived relationship quality, participants completed the 17-item (ct = .93) Benefit Finding Scale (scores 17-85, higher scores indicating greater perceived benefits; An toni et al., 2001). The scale captures patients’ and spouses’ perceptions of the positive contributions (e.g., greater patience and acceptance of things, spiritual and personal growth, greater purpose in life) made to their lives by the experience of per sonally having or living with a spouse with PD. Example items include, “having Parkinson’s disease has helped me become more focused on priorities, with a deeper sense of purpose in life” and “having Parkinson’s disease has taught me how to adjust to things I cannot change.” Although the original Bene fits Finding Scale was designed for patients with cancer (for details regarding instrument validation, please refer to Antoni et al., 2001), the instructions were modified and made relevant to patients with PD and their spouses (i.e., “Parkinson’s disease” was substituted for “cancer”). Participants also were asked to independently report on the perceived quality of their marriage using the 5-item (a = .96) quality of marriage index (QMI; scores 5-35, higher scores indicating greater perceived mar riage quality; for details regarding instrument validation and psychometrics, please refer to (Norton, 1983). Example items include, “our marriage is strong,” “my relationship with my partner makes me happy,” and “I feel like a part of a team with my partner.” Internal consistency reported in the literature for these scales are 0.95 and 0.76 for the Benefit Finding Scale and QMI, respectively (Antoni et al., 2001; Norton, 1983). Patient and spousal covariates. All participants provided sociodemographic information regarding their age, gender, race,
Table 1 Sociodemographic and Clinical Characteristics (n = 50) Respondent Variable Sociodemographic variables Age White Education (years) Employed Number years married Patient clinical characteristics Disease duration (years) Schwab & England Hoehn & Yahr Stage (median) Caregiver burden Psychosocial variables Depressive symptoms Anxiety symptoms Benefit finding Life satisfaction Relationship variables Marital quality Negative spousal exchanges
Patient
Test, p value
Spouse
68.4 (8.9) 72.3 (10.0) 24 (96.0%) 22 (88.0%) 13.5 (2.6) 13.6 (2.5) 12 (48.0%) 5 (20.0%) 43.4 (13.3)
f(df = 24) = 4.7, p < .001 X2(df = 2) = 1.4, p = .49 t(df = 24) = 0.03, p = .97 t(df = 1) = 4.4, p = .04 —
11.8(7.0) 75.2 (20.4) 2.5 —
— — — 18.8 (10.0)
— — — —
5.0 (3.9) 39.0 (8.7) 39.0 (7.6) 21.3 (9.0)
3.7 (5.0) 35.6(10.9) 43.1 (9.2) 23.9 (7.6)
t(df f(df f(df t(df
30.4 (4.4) 25.8 (9.2)
28.2 (5.8) 21.6 (6.6)
t(df = 24) = 1.9, p = .07 t(df = 24) = 2.0, p = .06
= = = =
24) 24) 24) 24)
= = = =
1.1,/? = .28 1.2, p = .24 -2 .3 , p = .03 -1 .3 ,/? = .19
Note. Cell values represent means (standard deviations) and frequencies (percents) for continuous and dichotomous variables, respectively. Measures included the following: “caregiver burden” (Revised Caregiving Appraisal Scale; range = 9-45); “depressive symptoms” (PHQ-9; range = 0-27); “anxiety symptoms” (STAI; range = 20-80); “benefit finding” (Benefit Finding Scale; range = 17-85); “life satisfaction” (Satisfaction with Life Scale; range = 5-35); “marital quality” (QMI; range = 5-35); “negative spousal exchanges” (Positive and Negative Social Exchanges Scale; range = 12-60).
BENEFIT FINDING AND PARKINSON’S DISEASE
education level, and number of years married. Both patients and spouses also were asked to complete the following scales: the 9-item (a = .82) Patient Health Questionnaire (Kroenke, Spitzer, & Williams, 2001; PHQ-9; scores 0-27, higher scores indicating greater depression severity) for severity of depressive symptoms during the previous 2 weeks; the 20-item (a = .70) Spielberger State Anxiety Scale (Spielberger, Gorsuch, Lushene, Vagg, & Jacobs, 1983; STAI; scores 20-80, higher scores indicating greater anxiety severity) for generalized anxiety, the Satisfaction with Life Scale (Pavot, Diener, Colvin, & Sandvik, 1991), a 5-item (a = .92) questionnaire assessing overall life satisfaction (scores 5-35, higher scores indicating more satisfaction); and the 12-item (a = .89) negative exchanges subscale of the Positive and Nega tive Social Exchanges scale (Newsom et al., 2003), with items capturing the frequency of four domains of negative (e.g., unsym pathetic or insensitive behavior, failure to provide help, rejection, or neglect) partner interactions in the previous month (scores 12-60, higher scores reflecting greater frequency of negative exchanges). Data collected specifically from patients with PD included number of years since PD diagnosis (i.e., PD disease duration); the Schwab and England Scale (Schwab & England, 1969) for patients’ ability to participate in activities of daily living (ADLs; range = “ 100%, completely independent” to “0% vege tative functions such as swallowing, bladder and bowel functions are not functioning;” and the Hoehn and Yahr Scale (Hoehn & Yahr, 1967) for disease stage (range = 1-5, higher scores reflect ing more advanced disease). Spouses were asked to complete the caregiving burden subscale of the Revised Caregiving Appraisal Scale (nine items, a = .96; range = 9 -4 5 ; Lawton, Kleban, Moss, Rovine, & Glicksman, 1989).
Analytic Plan In addition to descriptive, univariate analyses, tests of signifi cance included paired t tests for equality of means and chi-square tests of differences between patients with PD and their spouses on continuous and dichotomous outcomes, respectively. Zero-order correlations and t tests were computed in order to identify the unadjusted, bivariate associations among marital quality and each of the covariates noted above. To address the project’s primary aim of examining the association between benefit finding and marital quality, we ran an actor-partner interdependence model (APIM; Campbell & Kashy, 2002) using a multilevel, mixed modeling procedure in SAS v9.2. Using a multilevel modeling framework that treats each dyad as a separate “cluster” (i.e., individual par ticipants’ observations are nested within each couple), the APIM takes into account the nonindependence of responses from patients with PD and their spouses. Moreover, the APIM allows for anal ysis of the extent to which each participant’s perceived marital quality is related to their own perceived level of benefit finding (i.e., “actor” effect) as well as the extent to which the participant’s perceived marital quality is related to his or her spouse’s level of benefit finding (i.e., “partner” effect). The final model adjusted for covariates identified as clinically significant based on the zeroorder correlations (i.e., all variables that were correlated, r > .30, with marital quality were included). Thus, the statistical model included between-dyads (e.g., caregiver burden), within-dyads (e.g., whether the respondent was the patient or spouse), and mixed (e.g., benefit finding, negative exchanges, depressive symptoms)
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predictor variables. For ease of interpretation, effect coding ( - 1 vs. 1) was used for all categorical variables and all continuous predictor variables were grand mean centered. An alpha of < = 0.05 was used to indicate statistical significance.
Results Preliminary Bivariate Analyses Correlation analyses of the association between perceived mar ital quality and patient and spousal characteristics suggest that patients’ and spouses’ marital quality are associated with different factors (see Table 2). Patients’ perceived marital quality was significantly and positively associated with patients’ benefit find ing. Patients’ marital quality also was related to spouses’: per ceived marital quality, benefit finding, and anxiety symptoms. Spouses’ marital quality, on the other hand, was related to spous es’: negative exchanges with the patient, overall life satisfaction, and benefit finding. Finally, patients’ and spouses’ marital quality was not significantly associated with any of the sociodemographic characteristics, PD clinical characteristics (e.g., disease duration, Hoehn and Yahr stage), or spousal caregiver burden.
Association Between Benefit Finding and Relationship Quality-APIM of Dyadic Data After adjusting for actors’ and partners’ frequency of negative spousal exchanges, life satisfaction, anxiety and depressive symp toms, spousal caregiver burden, and whether the respondent (i.e., “actor”) was a patient or spouse, greater partners’ benefit finding was significantly associated with respondents’ reporting greater marital quality {p = .05; see Table 3). Moreover, the respondents’ own degree of benefit finding was significantly associated with their reported marital quality (p = .02). With respect to covariates, Table 2 Correlations Among Marital Quality and Patient and Spouse Factors Perceived marital quality Variables Patient factors Marital quality Benefit finding Depressive symptoms Anxiety symptoms Life satisfaction Negative social exchanges Disease duration (years) Schwab & England Hoehn & Yahr Stage Spouse factors Marital quality Benefit finding Depressive symptoms Anxiety symptoms Life satisfaction Negative social exchanges Caregiver burden
Patient
Spouse
0.43 (0.03) 0.03 (0.88) -0.11 (.60) 0.12 (0.57) -0 .2 4 (0.25) 0.15(0.48) -0 .0 6 (0.78) -0.19(0.37)
0.42 (0.04) 0.66 (C.001) 0.20 (0.34) 0.23 (0.26) 0.07 (0.76) -0.13 (.54) 0.11 (0.60) 0.17(0.43) -0.01 (0.61)
0.42 (0.04) 0.45 (0.03) -0.37 (0.07) -0.50 (0.01) 0.39 (0.05) -0.32(0.12) -0.22 (0.29)
0.65 (C.001) -0.13 (0.55) -0.33 (0.10) 0.46 (0.02) -0 .5 4 (0.01) -0.31 (0.13)
—
—
Note. Cell values represent Pearson correlation coefficients and associ ated p values.
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Table 3 Actor-Partner Interdependence Model o f the Association Between Benefit Finding and Marital Quality b (SE)
Variable Benefit finding Actor Partner Negative social exchanges Actor Partner Life satisfaction Actor Partner Depressive symptoms Actor Partner Caregiver burden Anxiety symptoms Actor Partner Respondent (ref = spouse) Respondent X Actor/partner benefit finding Respondent (ref = spouse) X Actor’s benefit finding Respondent (ref = spouse) X Partner’s benefit finding Intercept
0.20 (0.08) 0.17(0.08) -0.18 (0.08) -0.04 (0.08)
95% Confidence interval [0.14, 0.25] [0.11,0.22] [-0.24, -0.12] [-0.10, 0.02]
t test
p value
2.46 2.10
0.02 0.04
-2.10 -0.48
0.04 0.63
0.07(0.11) 0.13(0.11)
[-0.01,0.14] [0.06, 0.21]
0.62 1.23
0.53 0.22
0.24 (0.20) -0.06 (0.20) 0.09 (0.09)
[0.10, 0.38] [-0.19,0.08] [0.03,0.15]
1.17 -0.28 1.01
0.25 0.78 0.33
-0.06(0.10) 0.07 (0.09) 1.35 (0.73)
[-0.12, 0.01] [0.004, 0.14] [0.84, 1.85]
-0.58 0.72 1.85
0.56 0.48 0.08
-0.06 (0.08) 0.06 (0.08) 29.31 (0.64)
[-0.11,0.001] [0.003,0.12] [28.86, 29.75]
-0.67 0.72 45.48
0.51 0.48
Journal of Family Psychology 2014, Vol. 28, No. 5, 728-734
BRIEF REPORT
Benefit Finding and Relationship Quality in Parkinson’s Disease: A Pilot Dyadic Analysis of Elusbands and Wives Shahrzad Mavandadi
Roseanne Dobkin
Philadelphia VA Medical Center, Philadelphia, Pennsylvania and University of Pennsylvania
Rutgers-Robert Wood Johnson Medical School
Eugenia Mamikonyan
Steven Sayers
University of Pennsylvania
Philadelphia VA Medical Center, Philadelphia, Pennsylvania and University of Pennsylvania
Thomas Ten Have
Daniel Weintraub
University of Pennsylvania
Philadelphia VA Medical Center, Philadelphia, Pennsylvania and University of Pennsylvania
Parkinson’s disease (PD) significantly impacts both patients’ and spouses’ emotional and physical health. However, despite the im portance of social relationships for wellbeing, few studies have examined relationship quality and their correlates in individuals with PD and their partners. Specifically, no known studies have exam ined the association between benefit finding, or the experience o f personal growth and other positive changes in the face o f a stressor, and perceived marital quality. To address these gaps in the field, 25 married couples participated in a cross-sectional, pilot study. Patients were veterans diagnosed with idiopathic PD receiving care at the Philadelphia VA M edical Center. Each patient and spouse independently com pleted self-reported measures o f sociodem ographics, physical and mental wellbeing, caregiver burden, marital quality, and perceived benefits associated with having PD. A ctorpartner interdependence m odels revealed that, after adjusting for covariates, greater perceived benefits from either having PD or living with a spouse with PD was associated with greater marital quality, both for that individual and their partner. Thus, perceiving positive consequences, such as personal growth, as a result o f personally having PD or living with a spouse with PD is related to greater marital quality for both members of the marital dyad. Findings may inform individual and couples-based interventions that address the value of benefit finding and incorporate other techniques of positive reappraisal.
Keywords: chronic disease, Parkinson’s disease, marital relationship, psychosocial support systems caregiving
Parkinson’s disease (PD)—a chronic, progressively debilitating condition characterized by complex motor and nonmotor symp toms— has a significant impact not only on patients, but also on their spouses or partners. The fact that the majority of individuals
with PD are cared for by informal spousal caregivers underscores the value in identifying and exploring factors that may account for the interrelationship between spouse and patient wellbeing. Past studies of patients with PD and their partners have focused mainly
This article was published Online First Septem ber 1, 2014. Shahrzad Mavandadi, Mental Illness Research, Education and Clinical Center, Philadelphia VA Medical Center, Philadelphia, Pennsylvania, and Department of Psychiatry, Perelman School o f Medicine, University of Penn sylvania; Roseanne Dobkin, Department of Psychiatry, Rutgers-Robert Wood Johnson Medical School; Eugenia Mamikonyan, Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania; Steven Sayers, Mental Illness Research, Education and Clinical Center, Philadelphia VA Medical Center, and Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania; Thomas Ten Have, Center for Clinical Epidemi ology and Biostatistics, University of Pennsylvania; Daniel Weintraub, Mental Illness Research, Education and Clinical Center, Philadelphia VA Medical
Center, Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania, and Parkinson’s Disease Research, Education and Clinical Cen ter, Philadelphia VA Medical Center. This work was supported by the Philadelphia VA Medical Center’s Parkin son’s Disease Research, Education, and Clinical Center (PADRECC) Pilot Award from the U. S. Departm ent o f Veterans Affairs. The content of this article does not reflect the position or policy of the Department of Veterans Affairs or the United States government The authors have no financial conflicts of interest to report. Dr. Ten Have sadly passed away in May of 2011. Correspondence concerning this article should be addressed to S hahrzad M avandadi, 3900 W oodland A venue, 116A, P hiladelphia, PA 19104. E-m ail: S hahrzad.M avandadi@ va.gov
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BENEFIT FINDING AND PARKINSON’S DISEASE
on the bidirectional associations among factors like PD duration, physical functioning, and psychiatric comorbidity and caregiver mood, burden, and quality of life (Caap-Ahlgren & Dehlin, 2002). However, PD is associated with a variety of factors (e.g., commu nication difficulties, impaired sexual functioning, mood distur bance, and social anxiety) that have the potential to strain social relationships and increase interpersonal distress and withdrawal (Miller, Noble, Jones, Allcock, & Burn, 2008; Schrag, Hovris, Morley, Quinn, & Jahanshahi, 2003; Wielinski, Varpness, Erickson-Davis, Paraschos, & Parashos, 2010). For example, in dividuals with PD and their romantic partners often must adapt to disruptions in family roles and responsibilities, loss of employ ment, and stigmatization due to motor and nonmotor complications (Schrag et al., 2003). Couples also often have to adapt to increas ing disability, falls, and psychiatric symptoms caused by PD, such as depression, hallucinations, and delusions (Schrag, Hovris, Mor ley, Quinn, & Jahanshahi, 2006). Interpersonal distress, in turn, has been shown to predict greater health dysfunction, hypokinesia, and inhibited response to levodopa treatment among those with PD (Backer, 2000; Greene & Griffin, 1998; Singer, 1976). The importance of understanding the mechanisms underlying interpersonal functioning among couples dealing with PD is fur ther highlighted when viewed in the context of the vast literature on the impact of the marital relationship on health and wellbeing in general. Supportive social ties yield numerous emotional, tan gible, and instrumental benefits, thereby helping to buffer stress, enhance psychological wellbeing, and attenuate declines in health (Cohen & Wills, 1985; Seeman & McEwen, 1996; Uchino, Cacioppo, & Kiecolt-Glaser, 1996). Conversely, negative interactions or interpersonal stressors, which may involve critical or insensitive behavior, unwanted advice, resentment, and rejection, can lead to social withdrawal and distress for both members of the relationship dyad (Newsom, 1999; Newsom, Nishishiba, Morgan, & Rook, 2003). Despite changes in interpersonal functioning among indi viduals with PD and their partners and the significant impact of the marital relationship on health and wellbeing, a paucity of research has examined marital quality among individuals with PD and their partners (Carter et al., 1998; Tanji et al., 2008; Wielinski et al., 2010), and even fewer studies have examined correlates of rela tionship functioning in PD. One factor in particular that has not received attention in the PD literature despite its association with outcomes among other pa tient populations is the role of benefit finding in influencing relationship quality. Benefit finding occurs when patients and/or significant others experience personal growth or positive changes after being faced with a challenging or stressful circumstance (e.g., PD; Kim, Schulz, & Carver, 2007). Finding benefit in response to a stressful situation can be manifest in numerous ways, including spiritual and personal growth, developing greater empathy for others, having a greater appreciation for life, and reprioritizing life goals. Studies with patient populations (e.g., patients with cancer, multiple sclerosis) suggest that benefit finding is associated with better adjustment and fewer negative outcomes (e.g., depressive symptoms; Kim et al., 2007). For example, in longitudinal work with patients with multiple sclerosis, benefit finding has been shown to predict psychological wellbeing (Pakenham, 2005). Moreover, family caregivers of patients with cancer who report experiencing benefits in terms of developing a greater acceptance of things and appreciation for life also report greater adaptation
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and psychological adjustment (as measured by life satisfaction and depressive symptoms; Kim et al., 2007). Although the work outlined above has made a significant con tribution to our understanding of the association between benefit finding and wellbeing among patients and caregivers, it has fo cused primarily on either the patient or caregiver alone. Very few studies have examined the association between benefit finding and outcomes such as dyadic adjustment and marital quality among both relationship partners. Further, to our knowledge no studies have examined these factors among couples facing PD. This gap in the literature is notable given that those who report finding benefit in the face of a stressor also conceptualize the benefits gained in terms of positive changes in interpersonal functioning, improve ments in personal resources and skills, and strengthening of social ties, all of which have a direct impact on factors such as marital quality (Davis, Nolen-Hoeksema, & Larson, 1998). In one of the only studies to employ a dyadic design, Mock and Boerner (2010) found that among patients facing amyotrophic lateral sclerosis and their caregivers, couples where neither member perceived benefits experienced significantly greater depressive symptoms than those where at least one member of the dyad perceived benefits from having the disease (Mock & Boerner, 2010). Such findings high light the value of further examining the association between ben efit finding and not only psychological health, but also marital quality among both patients with PD and their spouses. To our knowledge, no study has looked at the association between benefit finding and perceived relationship quality among couples experiencing PD. Thus, to build upon findings from pre vious studies, the current study sought to examine the association between perceived benefit finding and marital quality among dy ads of individuals with PD and their spouses. We hypothesized that after controlling for other factors (e.g., depressive or anxiety symptoms, overall life satisfaction), both one’s own perception of benefits stemming from PD as well as their partner’s perception of benefits would be positively associated with relationship quality. Study findings may help to inform the development of clinical interventions and health care delivery models for people with PD and their family members.
Method Participants and Procedures Twenty-five PD patient/spouse dyads participated in the crosssectional pilot study. Specifically, the sample included 25 veterans (18 years of age and older) diagnosed with idiopathic PD by a movement disorders specialist and receiving routine clinical care at the Philadelphia VA Medical Center’s Parkinson’s Disease Research, Education, and Clinical Center (PADRECC). Prior to participant recruitment, study staff met with PADRECC clinical staff and provided a detailed overview of the project’s aims, procedures, and inclusion/exclusion criteria. Clinical staff were asked to refer potentially eligible participants to the PI and/or research coordinator. Veterans’ spouses also were recruited and enrolled. Couples were recruited for participation in the study if they reported having lived together for at least 1 year prior to study commencement and if they were willing and able to provide written informed consent. Couples with the following characteris tics were excluded: (a) hearing, visual, or other physical impair-
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merits leading to difficulty with informed consent process and/or assessment; (b) moderate-severe cognitive impairment, defined by a Mini-Mental State Examination (MMSE) score < 20 (Folstein, Folstein, & McHugh, 1975); (c) history of bipolar disorder, schizo phrenia, schizoaffective disorder, or dementia other than second ary to PD (patient only); and (d) unstable medical disease or active neurological disease other than PD (patient only). A total of 33 veterans and their spouses/partners were approached for the proj ect. Of those, seven couples refused participation and one couple was ineligible due to the veteran meeting criteria for moderatesevere cognitive impairment (MMSE score = 17). Upon providing consent, members of each couple independently completed an assessment battery that included standardized, well validated measures of sociodemographic variables, physical and mental wellbeing, relationship functioning, and caregiver burden. Each interview took approximately 2 hr to complete. All study procedures were approved by the Philadelphia VA Medical Cen ter’s Institutional Review Board (IRB). Table 1 presents a summary of patients’ and spouses’ sociode mographic and background characteristics. Although there were few significant differences between patients and their spouses, spouses were significantly younger (p < .001), more likely to be employed (p = .04), and more likely to report greater benefit from PD (p = .03) relative to patients.
Measures Patients and their spouses completed a battery of widely used scales that have evidenced acceptable to excellent internal consis tency; the coefficient alphas reported for each scale are based on the current sample.
Key study variables. To statistically model the influence of benefit finding on perceived relationship quality, participants completed the 17-item (ct = .93) Benefit Finding Scale (scores 17-85, higher scores indicating greater perceived benefits; An toni et al., 2001). The scale captures patients’ and spouses’ perceptions of the positive contributions (e.g., greater patience and acceptance of things, spiritual and personal growth, greater purpose in life) made to their lives by the experience of per sonally having or living with a spouse with PD. Example items include, “having Parkinson’s disease has helped me become more focused on priorities, with a deeper sense of purpose in life” and “having Parkinson’s disease has taught me how to adjust to things I cannot change.” Although the original Bene fits Finding Scale was designed for patients with cancer (for details regarding instrument validation, please refer to Antoni et al., 2001), the instructions were modified and made relevant to patients with PD and their spouses (i.e., “Parkinson’s disease” was substituted for “cancer”). Participants also were asked to independently report on the perceived quality of their marriage using the 5-item (a = .96) quality of marriage index (QMI; scores 5-35, higher scores indicating greater perceived mar riage quality; for details regarding instrument validation and psychometrics, please refer to (Norton, 1983). Example items include, “our marriage is strong,” “my relationship with my partner makes me happy,” and “I feel like a part of a team with my partner.” Internal consistency reported in the literature for these scales are 0.95 and 0.76 for the Benefit Finding Scale and QMI, respectively (Antoni et al., 2001; Norton, 1983). Patient and spousal covariates. All participants provided sociodemographic information regarding their age, gender, race,
Table 1 Sociodemographic and Clinical Characteristics (n = 50) Respondent Variable Sociodemographic variables Age White Education (years) Employed Number years married Patient clinical characteristics Disease duration (years) Schwab & England Hoehn & Yahr Stage (median) Caregiver burden Psychosocial variables Depressive symptoms Anxiety symptoms Benefit finding Life satisfaction Relationship variables Marital quality Negative spousal exchanges
Patient
Test, p value
Spouse
68.4 (8.9) 72.3 (10.0) 24 (96.0%) 22 (88.0%) 13.5 (2.6) 13.6 (2.5) 12 (48.0%) 5 (20.0%) 43.4 (13.3)
f(df = 24) = 4.7, p < .001 X2(df = 2) = 1.4, p = .49 t(df = 24) = 0.03, p = .97 t(df = 1) = 4.4, p = .04 —
11.8(7.0) 75.2 (20.4) 2.5 —
— — — 18.8 (10.0)
— — — —
5.0 (3.9) 39.0 (8.7) 39.0 (7.6) 21.3 (9.0)
3.7 (5.0) 35.6(10.9) 43.1 (9.2) 23.9 (7.6)
t(df f(df f(df t(df
30.4 (4.4) 25.8 (9.2)
28.2 (5.8) 21.6 (6.6)
t(df = 24) = 1.9, p = .07 t(df = 24) = 2.0, p = .06
= = = =
24) 24) 24) 24)
= = = =
1.1,/? = .28 1.2, p = .24 -2 .3 , p = .03 -1 .3 ,/? = .19
Note. Cell values represent means (standard deviations) and frequencies (percents) for continuous and dichotomous variables, respectively. Measures included the following: “caregiver burden” (Revised Caregiving Appraisal Scale; range = 9-45); “depressive symptoms” (PHQ-9; range = 0-27); “anxiety symptoms” (STAI; range = 20-80); “benefit finding” (Benefit Finding Scale; range = 17-85); “life satisfaction” (Satisfaction with Life Scale; range = 5-35); “marital quality” (QMI; range = 5-35); “negative spousal exchanges” (Positive and Negative Social Exchanges Scale; range = 12-60).
BENEFIT FINDING AND PARKINSON’S DISEASE
education level, and number of years married. Both patients and spouses also were asked to complete the following scales: the 9-item (a = .82) Patient Health Questionnaire (Kroenke, Spitzer, & Williams, 2001; PHQ-9; scores 0-27, higher scores indicating greater depression severity) for severity of depressive symptoms during the previous 2 weeks; the 20-item (a = .70) Spielberger State Anxiety Scale (Spielberger, Gorsuch, Lushene, Vagg, & Jacobs, 1983; STAI; scores 20-80, higher scores indicating greater anxiety severity) for generalized anxiety, the Satisfaction with Life Scale (Pavot, Diener, Colvin, & Sandvik, 1991), a 5-item (a = .92) questionnaire assessing overall life satisfaction (scores 5-35, higher scores indicating more satisfaction); and the 12-item (a = .89) negative exchanges subscale of the Positive and Nega tive Social Exchanges scale (Newsom et al., 2003), with items capturing the frequency of four domains of negative (e.g., unsym pathetic or insensitive behavior, failure to provide help, rejection, or neglect) partner interactions in the previous month (scores 12-60, higher scores reflecting greater frequency of negative exchanges). Data collected specifically from patients with PD included number of years since PD diagnosis (i.e., PD disease duration); the Schwab and England Scale (Schwab & England, 1969) for patients’ ability to participate in activities of daily living (ADLs; range = “ 100%, completely independent” to “0% vege tative functions such as swallowing, bladder and bowel functions are not functioning;” and the Hoehn and Yahr Scale (Hoehn & Yahr, 1967) for disease stage (range = 1-5, higher scores reflect ing more advanced disease). Spouses were asked to complete the caregiving burden subscale of the Revised Caregiving Appraisal Scale (nine items, a = .96; range = 9 -4 5 ; Lawton, Kleban, Moss, Rovine, & Glicksman, 1989).
Analytic Plan In addition to descriptive, univariate analyses, tests of signifi cance included paired t tests for equality of means and chi-square tests of differences between patients with PD and their spouses on continuous and dichotomous outcomes, respectively. Zero-order correlations and t tests were computed in order to identify the unadjusted, bivariate associations among marital quality and each of the covariates noted above. To address the project’s primary aim of examining the association between benefit finding and marital quality, we ran an actor-partner interdependence model (APIM; Campbell & Kashy, 2002) using a multilevel, mixed modeling procedure in SAS v9.2. Using a multilevel modeling framework that treats each dyad as a separate “cluster” (i.e., individual par ticipants’ observations are nested within each couple), the APIM takes into account the nonindependence of responses from patients with PD and their spouses. Moreover, the APIM allows for anal ysis of the extent to which each participant’s perceived marital quality is related to their own perceived level of benefit finding (i.e., “actor” effect) as well as the extent to which the participant’s perceived marital quality is related to his or her spouse’s level of benefit finding (i.e., “partner” effect). The final model adjusted for covariates identified as clinically significant based on the zeroorder correlations (i.e., all variables that were correlated, r > .30, with marital quality were included). Thus, the statistical model included between-dyads (e.g., caregiver burden), within-dyads (e.g., whether the respondent was the patient or spouse), and mixed (e.g., benefit finding, negative exchanges, depressive symptoms)
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predictor variables. For ease of interpretation, effect coding ( - 1 vs. 1) was used for all categorical variables and all continuous predictor variables were grand mean centered. An alpha of < = 0.05 was used to indicate statistical significance.
Results Preliminary Bivariate Analyses Correlation analyses of the association between perceived mar ital quality and patient and spousal characteristics suggest that patients’ and spouses’ marital quality are associated with different factors (see Table 2). Patients’ perceived marital quality was significantly and positively associated with patients’ benefit find ing. Patients’ marital quality also was related to spouses’: per ceived marital quality, benefit finding, and anxiety symptoms. Spouses’ marital quality, on the other hand, was related to spous es’: negative exchanges with the patient, overall life satisfaction, and benefit finding. Finally, patients’ and spouses’ marital quality was not significantly associated with any of the sociodemographic characteristics, PD clinical characteristics (e.g., disease duration, Hoehn and Yahr stage), or spousal caregiver burden.
Association Between Benefit Finding and Relationship Quality-APIM of Dyadic Data After adjusting for actors’ and partners’ frequency of negative spousal exchanges, life satisfaction, anxiety and depressive symp toms, spousal caregiver burden, and whether the respondent (i.e., “actor”) was a patient or spouse, greater partners’ benefit finding was significantly associated with respondents’ reporting greater marital quality {p = .05; see Table 3). Moreover, the respondents’ own degree of benefit finding was significantly associated with their reported marital quality (p = .02). With respect to covariates, Table 2 Correlations Among Marital Quality and Patient and Spouse Factors Perceived marital quality Variables Patient factors Marital quality Benefit finding Depressive symptoms Anxiety symptoms Life satisfaction Negative social exchanges Disease duration (years) Schwab & England Hoehn & Yahr Stage Spouse factors Marital quality Benefit finding Depressive symptoms Anxiety symptoms Life satisfaction Negative social exchanges Caregiver burden
Patient
Spouse
0.43 (0.03) 0.03 (0.88) -0.11 (.60) 0.12 (0.57) -0 .2 4 (0.25) 0.15(0.48) -0 .0 6 (0.78) -0.19(0.37)
0.42 (0.04) 0.66 (C.001) 0.20 (0.34) 0.23 (0.26) 0.07 (0.76) -0.13 (.54) 0.11 (0.60) 0.17(0.43) -0.01 (0.61)
0.42 (0.04) 0.45 (0.03) -0.37 (0.07) -0.50 (0.01) 0.39 (0.05) -0.32(0.12) -0.22 (0.29)
0.65 (C.001) -0.13 (0.55) -0.33 (0.10) 0.46 (0.02) -0 .5 4 (0.01) -0.31 (0.13)
—
—
Note. Cell values represent Pearson correlation coefficients and associ ated p values.
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Table 3 Actor-Partner Interdependence Model o f the Association Between Benefit Finding and Marital Quality b (SE)
Variable Benefit finding Actor Partner Negative social exchanges Actor Partner Life satisfaction Actor Partner Depressive symptoms Actor Partner Caregiver burden Anxiety symptoms Actor Partner Respondent (ref = spouse) Respondent X Actor/partner benefit finding Respondent (ref = spouse) X Actor’s benefit finding Respondent (ref = spouse) X Partner’s benefit finding Intercept
0.20 (0.08) 0.17(0.08) -0.18 (0.08) -0.04 (0.08)
95% Confidence interval [0.14, 0.25] [0.11,0.22] [-0.24, -0.12] [-0.10, 0.02]
t test
p value
2.46 2.10
0.02 0.04
-2.10 -0.48
0.04 0.63
0.07(0.11) 0.13(0.11)
[-0.01,0.14] [0.06, 0.21]
0.62 1.23
0.53 0.22
0.24 (0.20) -0.06 (0.20) 0.09 (0.09)
[0.10, 0.38] [-0.19,0.08] [0.03,0.15]
1.17 -0.28 1.01
0.25 0.78 0.33
-0.06(0.10) 0.07 (0.09) 1.35 (0.73)
[-0.12, 0.01] [0.004, 0.14] [0.84, 1.85]
-0.58 0.72 1.85
0.56 0.48 0.08
-0.06 (0.08) 0.06 (0.08) 29.31 (0.64)
[-0.11,0.001] [0.003,0.12] [28.86, 29.75]
-0.67 0.72 45.48
0.51 0.48
