Predictors of burden for caregivers of patients with Parkinson's disease.
Subject: Nursing (Practice)
Neurology (Research)
Parkinson's disease (Care and treatment)
Nervous system diseases (Care and treatment)
Caregivers (Surveys)
Authors: Edwards, Nancy E.
Scheetz, Patricia S.
Pub Date: 08/01/2002
Publication: Name: Journal of Neuroscience Nursing Publisher: American Association of Neuroscience Nurses Audience: Professional Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 2002 American Association of Neuroscience Nurses ISSN: 0888-0395
Issue: Date: August, 2002 Source Volume: 34 Source Issue: 4
Geographic: Geographic Scope: United States Geographic Code: 1USA United States
Accession Number: 90749881
Full Text: Abstract: Parkinson's disease (PD) is a chronic, progressive neurological disease that affects an estimated 1 million Americans each year. Its progressive nature leads to increased burden for the caregiver. This study explored factors that contribute to the perception of burden in caregivers of individuals with PD using a cross-sectional design. The sample consisted of 41 caregivers who were married to or cohabitating with individuals with PD. Questionnaires were mailed to spousal caregivers and returned via mail. Burden was determined by utilizing the Zarit Burden Inventory. The independent variables that were measured were activities of daily living (ADLs), perceived social support, psychological well-being, and marital satisfaction. All four factors were found to significantly predict perceived burden. Multiple regression analysis showed that ADLs and perceived social support were significant predictors of caregiver burden, accounting for 44.3% of the variance. The implication for healthcare professionals is that they should provide information on PD symptom management, thus promoting independence in performing ADLs, identifying appropriate resources to reduce caregiver burden, and using support groups.


As the population of older Americans increases, the incidence of chronic conditions such as heart disease, hypertension, arthritis, Alzheimer's disease, and Parkinson's disease (PD) increases as well (National Academy on an Aging Society, 1999). Chronic conditions are replacing infectious diseases, such as influenza and pneumonia, as the primary health problem facing older Americans. It is estimated that by the year 2050, the percentage of Americans with chronic conditions will increase with age, from 33% of those younger than 45 years, to 55.4% of those 45-64 years of age, and to 87.6% of those 65 years and older (Hoffman, Rice, & Sung, 1996). Although persons older than 65 years constitute 12% of the U.S. population, they account for 32% ($234 billion) of total personal healthcare expenditures (Whetten-Goldstein, Sloan, Kulas, Cutson, & Schenkman, 1997). It stands to reason that, if the factors that influence how a family successfully manages chronic health conditions can be isolated, the healthcare system would experience less financial strain. In addition, quality of life for older adults may improve.

As a result of the increase in chronic conditions, family caregiving has become a pressing social issue. Families are not typically socialized to assume the role of caregiver and are often ill equipped to manage the emotional and physical demands made on them (Harper & Lund, 1990). Caregiving spouses often face not only increasing caregiving demands but also their own aging processes and possible physical decline, which may add to the caregiving burden that they already experience. This study explored factors associated with the perception of burden in caregivers of individuals with PD.

Literature Review

Recent literature suggests that caregivers of individuals with chronic illness experience burden (Braithwaite, 1996; Lawton, Kleban, Moss, Rovine, & Glicksman, 1989; Lawton, Rajagopal, Brody, & Kleban, 1992; Montgomery, Gonyea & Hooyman, 1985; Parks & Pilisuk, 1991; Whetten-Goldstein et al., 1997; Zarit, 1992). Burden has been defined as the extent to which caregivers perceive that their health, social life, and financial status are suffering because of their caregiving experience (Zarit, Todd, & Zarit, 1986).

Negative outcomes, primarily feelings of burden generated by the demands of caregiving and the resulting declining physical and psychological health of caregivers, are generally viewed as dominating factors in the caregiving experience (George & Gwyther, 1986; Pruchno & Resch 1989; Zarit, Pearlin, & Schaie, 1993). Burden has been linked with an increased number of physical symptoms and increased number of physician visits by the caregiver (Cotton, Levine, Fitzpatrick, Dold, & Targ, 1999; Haug, Ford, Stange, Noelker, & Gaines, 1999; Sisk, 2000). The uncertainty of the caregiving experience related to the progression of the chronic conditions and the amount of disability to be encountered contribute to the stress experienced by the caregiver (Hughes, Giobbie-Hurder, Weaver, Kubal, & Henderson, 1999). This variability of the experience makes it difficult for caregivers to clarify the caregiving expectations for both themselves and the care recipients.

A variety of other variables has been noted to help explain the burden and health outcomes associated with caregiving. Stress process models have been widely used to examine the relationship among caregiving stressors, possible psychological resources, and caregiver well-being. Lazarus and Folkman (1984) emphasized the perception of stress (appraisal) as a component of burden. Several psychosocial resource factors that were identified as possibly mediating caregiving stress were caregiver appraisals of primary stressors, coping responses, and social support. Social support has frequently been noted as a powerful mediator or buffer for stressful situations including caregiving (Pearlin, Mullon, Semple, & Skaff, 1990). The perception of the quality of the caregiver's social support network and the satisfaction that he or she experiences from the support network has been shown to reduce stress (Miller, Berrios, & Politynska, 1996).

Social support affects both the individual with the chronic condition and the caregiver. The amount of burden is inversely related to the amount of social support. In addition, the amount of burden reported by the caregiver is positively related to the symptoms reported by the care recipient (Biegel, Mulligan, Putnam, & Sung, 1994). Faison, Faria, and Frank (1999) reported that there was a positive correlation between the level of care needed to perform activities of daily living (ADLs) and caregiver burden.

Although there is general agreement among studies about the existence of caregiver burden (emotional, physical, and financial), there is considerable variation about the specific causes of burden and the appropriate methods of interventions. There are numerous studies on caregiving of individuals with mental illness and Alzheimer's disease, but less is known about the effects of PD on caregiver burden.

PD is a chronic condition that results in progressive neurological disability. As the elderly population increases, the number of people with PD is resulting in a national health problem. It is estimated that PD affects approximately 110 in 100,000 persons in the United States or about 1 million persons (Tanner, Hubble, & Chan, 1997). This disease affects all races, with slight male predominance (Fischer, 1999). It is estimated that 15% of people 65-74 years of age and 29% of those 75-84 years of age have symptoms of PD and demonstrate various levels of ability to participate in ADLs (Biziere & Kurth, 1997).

Herndon, Young, Herndon, and Dole (2000) pointed out that PD is characterized by its cardinal manifestations of tremor, rigidity, bradykinesia, and postural instability. They suggest that an individual with this disease may experience progressive difficulty swallowing, difficulty with vocalizations resulting in impaired communication, and shuffling gait with increasing stiffness that can lead to permanent immobility.

The rate of decline in the health of individuals with PD is unique to each individual. The unpredictability and uncertainty of the disease contribute to the increased burden perceived by caregivers (Mailick-Seltzer & Wailing-Li, 1996). Wallhagen and Brod (1997) found that when the individual with PD had a perception of control over his or her symptoms, it resulted in decreased caregiver burden. In addition, increased symptom management resulted in increased perception of caregiver well-being. This study examined factors that may predict the perception of burden by the caregiver.



The sample included married and cohabitating individuals who were the primary caregiver for an individual with PD. The sample was obtained through support groups, educational conferences, and physician offices. A purposive sampling approach was undertaken, utilizing strategies suggested by Dillman to improve return rates in an attempt to maximize returns (Dillman, 1978, 1991). Information letters were distributed to potential participants with a consent form and a self-addressed, stamped return envelope. Those who returned the consent were sent the research questionnaire packet. If the questionnaire packet was not returned within 3 weeks, a reminder card was sent. A second questionnaire was mailed 3 weeks after the card if there was no return.

A sample of 41 couples in which one individual in each couple had PD was obtained. The caregiver sample consisted of 28 females (68%) and 13 males (32%) who were in a relationship with an individual with PD. The group was primarily Caucasian (n = 36) with four spouses reported as Native American and one spouse as Asian. The ages of the respondents ranged from 44 to 85 years (M = 66.8 years). The spouses had been caregivers for an average of 3.8 years.

Of the total sample, 39 of the couples were married; 35 couples (85.5%) were in their first marriage, 4 couples (9.7%) were in their second marriage, and 2 couples (4.8%) were cohabitating. In this report, the terms caregivers and spouses are used interchangably.

The spouses generally had high levels of education. Eight individuals (21%) reported a graduate or professional degree. In total, 27 individuals (66%) had at least some college education. Four individuals reported less than a high school diploma.

The caregivers were asked to self-rate their health on a 1 (poor) to 4 (excellent) scale. No individual reported poor health. Ten individuals (24.4%) reported excellent health, 24 individuals (58.5%) reported good health, and seven individuals (17.1%) reported fair health.

Individuals reported attending a variety of support groups including PD support groups and a caregivers' support group. Of the total sample, 10 (25%) reported attending a support group at least 9 to 12 times per year, 7 reported attending occasionally (5 to 8 times per year), and 9 reported attending less than 4 times per year; 15 (37%) reported never attending a support group of any kind.

The couples resided almost equally in urban settings with populations of more than 75,000 (n = 16) and rural settings with populations of less than 25,000 (n = 17). Eight couples lived in settings with populations between 25,000 and 74,999.


The Burden Inventory (Zarit et al., 1986) assessed perceived burden of the caregiver spouse. The Zarit Burden Inventory (ZBI) has been utilized in studies with a variety of chronic conditions such as rheumatoid arthritis, Alzheimer's disease, and other dementias (Harper & Lund, 1990; Manne & Zautra, 1990; Walker, Acock, Bowman & Li, 1996). This 22-item inventory assesses the degree to which caregivers perceive that their responsibilities have an adverse effect on their lives. Each item was scored on a 5-point response format from 0 (never) to 4 (nearly always). The total individual burden score was determined by summing the scores from all 22 items for a score ranging from 0 to 88. The inventory has demonstrated a Cronbach's alpha of 0.89 (Manne & Zautra).

Marital satisfaction of the, caregiver spouse was measured with the Kansas Marital Satisfaction Scale (KMSS, Schumm et al., 1986). The KMSS consists of three items that measure the amount of marital satisfaction on a 7-point response scale ranging from 1 (extremely dissatisfied) to 7 (extremely satisfied). The possible range was from 3 (lowest satisfaction) to 21 (highest satisfaction). The KMSS scale has been substantially correlated with both the Dyadic Adjustment Scale (Spanier, 1976; Spanier & Filsinger, 1983) and the Quality of Marriage Index (Norton, 1983). The inventory demonstrated a high level of internal consistency with an alpha of 0.94.

The support perceived by the caregiver spouse was measured by an adaptation of the Perceived Social Support-Family (PSS-Fa) Scale by Procidano and Heller (1983). The PSS-Fa is designed to measure the extent to which an individual perceives that the family fulfills his or her needs for support, information, and feedback. The PSS-Fa is a 20-item instrument originally scored on a yes-no dichotomy. The response format was altered to a 6-point Likert-type scale ranging from 1 (very strongly disagree) to 6 (very strongly agree). The item scores were summed to arrive at the individual total with a score range from 20 (minimal support) to 120 (maximal support). The PSS-Fa was found to be internally consistent, with a Cronbach's alpha of 0.90 (Procidano & Heller).

ADLs of the people with PD were measured with an adaptation of the Activities for Daily Living Self-Care Scale for Multiple Sclerosis Persons (ADL-MS scale; Gulick, 1987). The ADL-MS scale measures ADLs most frequently affected by MS. These activities also are the ones that are most often affected by individuals with PD. The wording was adapted to make it appropriate for the individual with PD. The 15-item scale was developed to measure the level of functioning in 12 different areas. The participants responded on a 6-point Likert scale ranging from 0 (never) to 5 (always) for a total score range from 0 (maximal assistance) to 75 (no assistance). The items were summed to obtain an individual total. The ADL-MS scale was found to be internally consistent, with a Cronbach's alpha of 0.86 (Gulick, 1987).

The psychological well-being of the caregiver was measured by using the Bradburn's Affect Balance Scale (ABS; Bradburn, 1969). This scale measures positive and negative affect. The instrument consists of 10 items to which the subject responded on a 4-point scale ranging from 1 (strongly disagree) to 4 (strongly agree). The items were summed to obtain an individual total score ranging from 10 (low personal well-being) to 40 (high personal well-being). Bradburn's ABS has been used to measure the well-being in caregivers who have family members with chronic conditions (Lieberman & Fisher, 1995; Tiedje et al., 1990). The ABS has received Cronbach alphas of 0.94 and 0.90 in previous research (Lieberman & Fisher; Tiedje et al.).


The couples for this study were obtained from physician referrals, educational programs for PD, and support groups in six Midwestern states. Individuals were given a descriptive letter that provided an overview of the study, an invitation to participate, and a consent form to be signed by both individuals. Eighty-two descriptive letters and consent forms were distributed to individuals who expressed a possible interest. Sixty-eight consent forms (83%) were returned. Upon receipt of the consent form, a packet containing the questionnaires for the individual with PD and a questionnaire for the spouse, a letter of instruction, and a stamped, self-addressed envelope for return was sent to the couple. Each individual questionnaire was enclosed in a brown envelope to help ensure confidentiality of responses. The researcher received 41 of the 68 packets for a 60% return rate.


Characteristics of the measures are summarized in Table 1. Caregiving spouses of individuals with PD reported a minimum to moderate amount of burden, as measured by utilizing the ZBI, with a mean of 23.6. The spouse total scores ranged from 0 to 59. The inventory demonstrated high internal consistency with an alpha of 0.93.

Spouses overall reported a moderately high degree of marital satisfaction as measured by the KMSS. The scores ranged from 7 to 21 with a mean score of 17.3. An alpha of 0.94 was obtained.

Perceived support as measured by the PSS-Fa suggested a moderately high amount of perceived support with a mean of 89.2. The individual total score ranged from 63 to 120. The scale demonstrated high internal consistency with alpha of 0.93.

Moderate psychological well-being, as measured by utilizing Bradburn's ABS, was reported by the spouses with a mean score of 30.6. Overall, all the spouses reported moderate well-being with scores ranging from 20 to 40. The scale demonstrated acceptable internal consistency with an alpha of 0.77.

The caregivers were asked to rate their perception of the care recipient's dependence in performing ADLs by using the ADL-MS scale. This resulted in a moderately high mean score of 57.3. The range included individuals who need minimal assistance (score of 25) to those who need maximal assistance (score of 72). The internal consistency was noted to be alpha = 0.77.

The relationships between the demographic variables and perceived burden of the spouses are displayed in Table 2. The average burden score reported by females was almost twice the mean burden reported by their male counterparts. Spouses who may be financially distressed with family incomes of less than $25,000 per year reported more than two times the burden as couples in any other financial category.

Individuals who reported occasional support group attendance yielded higher levels of perceived burden than those who never attended a support group or attended less than four times a year. Location of residence (rural versus urban) yielded little difference in the perception of burden.

The four variables were significant predictors of the degree of overall perceived burden. The strongest single predictor of overall burden was the amount of assistance needed with ADLs (r = 0.62, p < .0000). The greater the assistance needed by the individual with PD, the greater the perceived burden by the spouse. Perceived social support, psychological well-being, and marital satisfaction were all significant predictors of caregiver burden (r = 0.56, p < .0002; r = 0.46, p < .002; r = 0.47, p < .0019, respectively).

A stepwise multiple regression analysis for perceived burden and the four independent variables was conducted by using the predictor variables (i.e., ADLs, perceived social support, psychological well-being, and marital satisfaction) that were statistically significant in the respective bivariate analyses to determine model fit in predicting perceived burden of the caregiver spouse. The ADL-MS and PSS-Fa scores were significant predictors of burden, accounting for 44.3% of the variance (multiple R = 0.666; [R.sup.2] = 0.443). Psychological well-being and marital satisfaction were deleted from the model. Results are summarized in Table 3.


The majority of caregivers in the sample were women, which is consistent with the literature (Miller, 1990; Parks & Pilisuk, 1991; Robinson, 1997; Rose-Rego, Strauss, & Smyth, 1998). Note that men have a higher incidence of PD, which would influence the gender of the caregivers. Women caregivers reported almost twice the burden as men. Hooker, Manoogian-O'Dell, Monahan, Frazier, and Shifren (2000) noted that women are almost solely responsible for caregiving, yet they feel guilty about not giving enough or even being somehow responsible for the person's condition. In one of a few longitudinal studies, Zarit et al. (1986) reported that initial differences in subjective burden between wives and husbands were present in the early portion of the study but were no longer present at the time of the 2-year follow-up. Although the current study is not longitudinal, the women in this study reported almost twice the burden as the male caregivers. Verbrugge (1985) suggested that women were more sensitive to health issues and were inclined to attribute their burden to caregiver stress or find the physical aspects of providing care more arduous.

Gender is only one facet of the complex caregiving process. According to the stress paradigm by Lazarus and Folkman (1984), perceived stressors and resources influence caregiver burden. Stressors include financial strain and level of spousal impairment. Couples whose combined income was $25,000 or less reported more than twice the burden of couples in any other category. It may be that in these couples, the individuals with PD are unable to work and contribute financially. In addition, couples who are retired and living on a limited income may face medical expenses they did not anticipate. This lack of financial resources may place additional burden on the caregiving spouse.

Four predictor variables--perceived social support, ADLs, marital satisfaction, and psychological well-being--were all found to be significant when bivariate analyses were performed. When multiple regression analysis was used, only perceived support and ADLs were found to be significant predictors of burden. Marital satisfaction and psychological well-being apparently do not provide much additional unique information beyond that already provided by the two significant predictors.

Some researchers suggest that caregiver burden is not strongly related to the severity of patient symptoms (Hooyman & Lustbader, 1986). However, in our study, it was clear that as the symptoms of PD increase and the ability to control those symptoms decreases, more assistance with the ADLs becomes necessary. Miller et al. (1996) reported that the level of functioning may affect the burden of some caregivers, which was supported by our findings.

Social support also was a significant predictor. In much of the literature, support is seen as a buffering effect; therefore, it is reason able to expect that a caregiver who provides high levels of care while receiving high support would perceive fewer burdens than an individual with a high level of caregiving and minimal support.

Note that individuals who attended support groups frequently or occasionally reported higher levels of perceived burden. Some studies found the use of support groups to be significant in reducing burden, whereas Zarit and Toseland (1989) concluded that individual and family counseling were more effective.

Our study did not examine the influence of support groups on burden. Many individuals may not seek a support group until the levels of perceived burden become high, whereas individuals with lower levels of perceived burden may not feel the need to join a support group. Zarit and Toseland (1989) recommended that researchers use more appropriate outcome measures. They noted that group members have various agendas when attending a support group, and therefore utilization of the same outcome measures for all people may not be appropriate.

Implications for Nursing

As the elderly population in the United States grows, PD will continue to present a challenge to healthcare professionals. The management of PD requires an ongoing commitment not only from the patient but also from the family when ongoing lifestyle adjustments become necessary as the disease progresses. It is vital that healthcare professionals help the patient and family make adjustments. Because assistance with ADLs and perceived support were significant predictors of caregiver burden, interventions that focus on these factors should be explored.

The healthcare professional must assess the knowledge base of the individual with PD and caregiver with specific emphasis on symptom management. Therefore, specific interventions, such as increased exercise for flexibility, breathing techniques to increase airflow to improve communication, decreased stress, and medication administration and regulation could all result in less caregiver burden. Encouraging the individual with PD to keep a diary or ledger that records difficulties or problems that exist and the time of day that they occur allows the healthcare professional to examine possible causative factors and interventions that are specific to the individual with PD.

The increasing need for assistance with ADLs leads to increased caregiver burden. Therefore, suggestions are usually welcomed. Assessing the need for adaptive equipment can help individuals with PD maintain independence with their ADLs. Timing the activities to coincide with medication administration helps by matching activity with periods of decreased rigidity.

Because most individuals with PD are cared for at home, strain on caregivers is an important consideration. Efforts must be made to identify appropriate resources that the caregiver can utilize as support, thereby reducing burden. The healthcare professional can identify community resources that may be beneficial, including respite care and in-home care. In addition, services that can assist with household chores such as cleaning, laundry, and grocery shopping are often necessary.

It is important that the healthcare professional also be aware of the need for the caregiver to experience a change of scenery and responsibility. Thus, it may be better to find someone to sit with the individual with PD and allow the caregiver to leave and purchase groceries versus having someone purchase and deliver the groceries.

Care for the caregiver is a concept that needs to be recognized. Caregivers should be encouraged to take time for themselves to do such things as get a haircut or attend a social event. Many times this short break from responsibilities allows the individual to return to the partner refreshed and ready to resume caregiving duties. Aarsland, Larsen, Karlsen, Lim, and Tandberg (1999) found that when compared to healthy elderly individuals, caregiving spouses had more severe depression and a higher proportion of reported tiredness, sadness, and less satisfaction with life. The healthcare professional can help provide emotional support, because frequently the caregivers feel guilty for taking time away for themselves. Support groups also can be offered as a source of sharing and support. Many support groups are set up for both the individual with PD and the caregiver.


One limitation of this study was the homogeneity of the sample. The participants in this study were primarily white, thus limiting the generalizability to other racial or ethnic groups. No black or Hispanic participants were obtained through the sampling procedures. In addition, the 60% return rate may have skewed the results. The 40% who failed to return the questionnaire may have been those who were experiencing extreme levels of burden and felt that they could not handle another task.

Another limitation is that this study examined the burden of the caregivers but did not examine the perceptions of the individual with PD. Analysis of caregiver burden will be more complete when the dyad of the individuals with PD and their caregivers is considered in the equation. Because of the sample size, we cannot generalize the findings of this research to the general Parkinson's affected population; however, areas for future research are identified.

Areas for Further Research

The congruence between the perceptions of the caregiver and care receiver regarding burden, stress, and support may be important to understanding and eventually predicting factors influencing burden and outcomes. Once the predicting factors are identified, early assessment and interventions can be performed to improve outcome for the care receiver and caregiver. Congruence between the caregiver and care receiver regarding what constitutes care is an avenue that needs further exploration. There appears to be some evidence that caregivers view a greater number of activities as caregiving activities than do care receivers and other family members (Wallhagen & Brod, 1997). This can lead to the caregiver feeling burdened by activities that are not even considered by family, care recipients, and healthcare professionals.


PD affects not only the individual with the disease but also the caregiver. With the progressive decline expected through the course of the disease, it is imperative that interventions be taken to predict and decrease the amount of burden experienced by the caregiver. Because a decline in the ability of individuals with PD to perform ADLs and in the amount of perceived social support resulted in an increase in burden felt by the caregiver, assessment of ADLs, symptom control, and social support are imperative. Interventions must focus on methods to maintain independence for the individual with PD and to identify possible support sources.


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Questions or comments about this article may be directed to: Nancy E. Edwards, PhD RNC, Purdue University, 1337 Johnson Hall School of Nursing, West Lafayette, IN 47907. She is an assistant professor at Purdue University.

Patricia S. Scheetz, MSN FNP, is a visiting assistant professor at Purdue University.
Table 1. Characteristics of Measurement Instruments

                              Possible   Actual
Scale                  Mean    Range     Range    Alpha

Burden (ZBI)           23.6    0-88      17-59    0.93
Marital Satisfaction
  (KMSS)               17.3    3-21       7-21    0.94
Perceived Social
  Support (PSS-Fa)     89.2   20-120     63-120   0.93
Activities of Daily
  Living (ADL-MS)      57.3    0-75      25-72    0.77
  Well-Being (ABS)     30.6   10-40      20-40    0.77
Table 2. Demographics of the Sample and Pair
Relationship to Burden (N = 41)

            Variable                Mean Burden Score   n

  Male                                    14.6          13
  Female                                  27.7          28
        $0-$25,000                        49.0           7
   $25,000-$35,000                        19.5           9
   $35,000-$45,000                        21.0          10
   $45,000-$55,000                        22.8           5
   $55,000-$75,000                        14.0           2
   $75,000-$100,000                       20.8           5
  >$100,000                               21.3           3

Support Group Attendance (Yearly)
  Frequent (9-12)                         26.8          10
  Occasionally (5-8)                      35.5           7
  Rarely (<4)                             17.8           9
  Never                                   19.2          15
  Rural <25,000                           22.0          17
  City 25,000-75,000                      25.9          10
  Urban >75,000                           23.8          14
Table 3. Results of Multiple Regression Analysis

                Variable                     B       Beta    ficance

Activities of Daily Living (ADL-MS)        -0.644   -0.435    0.005
Perceived Social Support Family (PSS-Fa)   -0.348   -0.317    0.037

Psychological Well-Being (ABS)                      -0.194    0.166
Marital Satisfaction (KMSS)                         -0.097    0.599
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