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Stress and family functioning among caregivers of persons with Parkinson's disease
PRD 150
Parkinsonism & Related Disorders Parkinsonism and Related Disorders 5 (1999) 69–75
Stress and family functioning among caregivers of persons with Parkinson’s disease C. McRae*, P. Sherry, K. Roper College of Education, University of Denver, Denver, CO 80208, USA Received 31 July 1998; received in revised form 16 February 1999; accepted 16 February 1999
Abstract This study investigated components of caregiving that cause distress among Parkinson’s caregivers and explored relationships between stress and family functioning. Fifty caregivers completed two self-report measures designed to assess caregiver stress and characteristics of the family environment. Differences in terms of family environment were found between caregivers who reported high and low stress. Certain aspects of caregiving were reported to be more distressing than others, and demographic characteristics were related to family functioning. Duration of the caregiving was not related to stress and there were no differences in family environment based on duration. These results have implications for clinical practice and the development of interventions for Parkinson’s caregivers. q 1999 Elsevier Science Ltd. All rights reserved. Keywords: Parkinson’s disease; Caregiving; Stress
1. Introduction Caring for a family member with Parkinson’s disease is a long, stressful process which taxes emotional, physical and financial resources [1–9]. Although there is no cure for Parkinson’s disease at present, current pharmacological and surgical treatments are able to moderate symptoms in many people for relatively long periods of time; thus, prolonging individual lives and extending the time of necessary care provision. Stress is a well documented and researched component of caregiving, particularly among caregivers of persons with chronic disease [10–14]. It has generally been found that caregivers experience more stress and emotional difficulties, such as depression and anticipatory grief, than the general population [15–16]. In several studies of Parkinson’s caregivers, results indicated the disease is very intrusive in caregivers’ lives [1–3,5]. Factors related to the disease and its progression are often viewed as predictors of caregiver adjustment. For example, caregivers were found to accumulate more strain and become more depressed as the care recipient’s disease progressed and physical functioning declined [3]. The findings in this study also indicated that caregivers reported a decline in their own physical health. * Corresponding author. Tel.: 1 303-871-2475; fax: 1 303-871-4456. E-mail address: [email protected] (C. McRae)
Similar studies have found motor impairment and physical functioning of care recipients to be predictive of caregiver distress [1,2]. O’Reilly [5] reported that caregivers had less social contact with friends over time as the need for care provision increased. Other researchers have suggested that environmental and caregiver characteristics contribute substantially to caregiver adjustment. A review of the caregiving literature by Davis [17] noted several factors that may cause distress to caregivers: the difficulty of juggling multiple caregiver, social, and familial roles while trying to maintain a sense of normalcy; the distressing nature of illnesses involving cognitive impairment; and having to perform direct patient care involving intimate bodily contact. Cattanach and Tebes [11] suggested that factors such as gender, living arrangement, and familial generation have greater impact on the caregiver’s health and psychosocial functioning than the care recipient’s type of impairment. This view is supported by research related to Parkinson’s disease, which found that caregivers’ current psychosocial adjustment is more predictive of future well being than patient characteristics or impairment [8,18]. Although it is obvious that caring for a person with Parkinson’s disease is stressful, research has not examined the specific factors that may cause difficulties for the caregivers [1,8,19]. Very little is known about the specific strains on Parkinson’s caregivers and frequently the research findings are contradictory. Davis [17] constructed
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a profile of the caregiver at high risk for increased stress and burnout. Many of the factors indicating greater vulnerability are demographic characteristics. Typically, middle-aged or older women are at most risk, as well as individuals who live with the care recipient and are the sole care provider. In addition, individuals at high risk for burnout tend to have limited personal, social, and/or financial resources. Along with our lack of knowledge about specific stressors affecting Parkinson’s caregivers and who might be most vulnerable to caregiver stress, we know very little about the relationship between caregiver stress and the family environment. Studies in the caregiving literature have tended to focus on the primary caregiver and have not examined other aspects of family functioning, which might affect the quality of caregiving as well as the care recipient [19]. A number of authors have called for research to examine the broader family perspective in chronic illness and caregiving [9,20–21]. Preliminary studies suggest relationships between family support and adjustment of the caregiver, but these investigations have not examined particular variables that influence adjustment [8]. The primary aim of the present study was to learn more about the sources of stress among caregivers of persons with Parkinson’s disease and to investigate relationships among demographic characteristics, stress, and family functioning. These specific questions were addressed: 1. What are the most and least stressful aspects of being a caregiver of someone with Parkinson’s disease? 2. Are there differences in family functioning between caregivers who report high and low stress? 3. Are there differences in level of stress and family functioning depending upon duration of caregiving? 4. Are there significant relationships between the demographic variables of patient age, caregiver age, caregiver education, and duration of caregiving and level of stress, and between those demographic variables and specific aspects of family functioning?
2. Method 2.1. Participants The sample of Parkinson’s caregivers was drawn from persons attending a regional educational symposium for caregivers of persons with Parkinson’s disease in a large metropolitan area. To be included in the study, participants had to have been the primary caregiver for a Parkinson’s patient for at least one year prior to the survey. Participants also had to provide at least 5 hours of care a day to the patient. All persons at the conference were invited to participate in the research project. Of the 98 persons attending, 69 indicated they met the criteria for inclusion in the study; out of which 50 (72%) completed and returned the questionnaires on the day of the symposium, ensuring a
representative sample of individuals attending the conference that day. Responses were received from nine men (18%) and 41 women (82%). The average age of the caregivers was 63.7 years (SD 10.9), with ages ranging from 37 to 85. The average age of the care recipient was 70 years (SD 10.5), with ages ranging from 43 to 89. The length of time spent as a caregiver for a Parkinson’s patient ranged from one to 19 years, with an average duration of 5.8 years (SD 4.3). This sample of caregivers reported an average educational level of 14 years (SD 2.5), with a range from 4 to 21 years. 2.2. Measures 2.2.1. Care Management Stress scale (CMS; 22) This instrument was designed to gather data about particular areas of caregiver stress. The Care Management Stress scale consists of 25 items scored on a Likert scale ranging from 1 (never) to 5 (nearly always), with higher scores indicating greater stress. Total possible scores range from 25 to 125. Sample items include “I am uncomfortable leaving my relative alone” and “I get easily upset with my relative.” The instrument has been used with caregivers of persons with Alzheimer’s disease and appears to have adequate reliability and validity [23]. Reliability (coefficient alpha) of the scale for this sample was 94. 2.2.2. Family Environment Scale-Short Form (FES; 24) The Family Environment Scale-Short Form is a 40 item self-report inventory with 10 subscales. This instrument is commonly used to assess perceived social and environmental characteristics of families, including those with chronic medical illnesses [24]. It is one of nine social climate scales developed by Moos and Moos [24] to assess a variety of social environments. Using modifications made by Dorn [25] in a study of persons at risk for Huntington’s disease and their spouses, the scoring of items was changed from the original true/false format to a five-point Likert scale ranging from 1 (very strongly agree) to 5 (very strongly disagree). Each subscale is composed of four items, resulting in total possible scores that can range from 4 to 20. In this study, estimates of reliability (coefficient alpha) for the 10 subscales ranged from .21 to .74. As a result of the low reliability of some of the scales for this sample, only the five subscales with the highest reliability (ranging from .65 to .74) were included in further analyses. These subscales were Cohesion, Expressiveness, Conflict, Independence, and Intellectual/Cultural Activities. Sample questions for each of these subscales are given below: 1. Cohesion: “Family members really help and support one another.” 2. Expressiveness: “We say anything we want to around home.” 3. Conflict: “Family members hardly ever lose their tempers.”
C. McRae et al. / Parkinsonism and Related Disorders 5 (1999) 69–75 Table 1 Rank order of stresses reported by Parkinson’s disease caregivers. (Means indicate frequency of that variable: 1 never; 5 nearly always) Variable
Mean
SD
I’m afraid of what the future will be. I’m feeling more tense and nervous. Worries bother me a lot. I would like to see friends more. I get tired and worn out doing everything. Everyone fails to appreciate what is happening. I’m uncomfortable leaving my relative alone. I need more rest and sleep. It is hard now to accept this diagnosis. Family fail to understand what I’m experiencing. I have a lot of financial concerns. It’s hard for my family to accept this diagnosis. I feel I am getting isolated. I feel I need more help. Family members could help a lot more. I feel my health is suffering because of this. I feel abandoned by doctors/professionals. I feel I need more privacy. I’m unable to get out to do what I need to. Decisions are hard for me to make. My relative asks too much of me. I get easily upset with my relative. My relative’s behavior frightens me. Family members think I should do more. I’m embarrassed by my relative’s behavior. Total score
3.64 3.50 3.30 3.15 3.14 3.06 3.04 3.00 2.98 2.94 2.92 2.90 2.88 2.82 2.81 2.80 2.75 2.73 2.67 2.65 2.63 2.62 2.35 2.15 1.80 69.58
1.10 1.11 1.18 0.98 1.08 1.10 1.35 1.37 1.38 1.30 1.35 1.23 1.29 1.15 1.19 1.22 1.36 1.23 1.25 1.00 1.33 1.09 1.39 1.26 1.01 21.15
4. Independence: “We do not do things on our own very often in our family.” 5. Intellectual/cultural activities: “We rarely go to lectures, plays or concerts.” The items with negative wording (see sample items 3–5 above) were reverse scored before being summed. Items were coded such that high subscale scores consistently reflected more of that particular domain. Thus, for the Conflict subscale, higher scores represent more problematic functioning. For the other subscales, higher scores indicate more adaptive family functioning. 2.3. Statistical analyses To investigate the relative frequency or stressfulness of
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the individual items in the Care Management Stress scale, means and standard deviations of the 25 items were calculated. Multivariate analysis of variance (MANOVA) was used to investigate differences in family functioning between caregivers reporting high and low stress and longer and shorter duration of caregiving. Pearson product moment correlations were used to explore relationships between demographic variables and caregiver stress, and between demographic variables and aspects of family functioning.
3. Results Descriptive information and the rank order of average scores for items in the Care Management Stress scale are shown in Table 1. It is interesting to note the wide variation in scores from the most stressful item (M 3.64) to the least stressful item (M 1.8). It appears that the items indicating high stress are related to personal concerns and anxiety (e.g., “I’m afraid of what the future will be,” “I’m feeling more tense and nervous,” and “Worries bother me a lot”), whereas the items associated with low stress are concerned with more external variables (“I’m embarrassed by my relative’s behavior,” “Family members think I should do more,” and “My relative’s behavior frightens me”). After observing the wide range of scores for the items in Table 1, we examined differences between the eight most stressful items (the top third) and the eight least stressful items (the bottom third). Results of a paired t-test (t 10.54, p , 0.001) indicated there were significant differences in the types of stresses endorsed by this sample. In other words, some items were reported to be a great deal more stressful than others. To determine whether there were differences in family functioning between subgroups reporting high and low stress, we divided the sample into thirds based on total scores on the Care Management Stress scale. Scores in the top and bottom thirds of the distribution were designated high and low stress, respectively. A MANOVA was conducted which yielded a significant overall difference between the groups, F (1, 29) 5.72, p 0.001 (effect size R 0.53). Further analyses of the univariate tests (see Table 2) were completed using a Bonferroni correction to reduce Type 1 error inflation due to multiple tests,
Table 2 Comparison of Family Environment Scale subscale means for caregiver groups who reported high and low stress. (Higher scores indicate more of that dimension. Subscale scores could range from 4 to 20. ***p , .001) Family Environment Scale subscales
Cohesion Expressiveness Conflict Independence Intellectual/cultural activities
High stress caregivers
Low stress caregivers
Mean
SD
Mean
SD
Univariate F
Eta 2
10.06 9.35 10.71 12.47 11.47
3.49 2.78 3.92 4.06 3.83
15.21 13.36 7.50 15.36 14.79
2.46 1.91 2.90 2.53 3.07
21.65*** 20.86*** 6.45 5.34 6.86
.43 .42 .18 .16 .19
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Table 3 Relationships between total stress score and aspects of family functioning. (Total stress score is from the Care Management Stress scale [22]. Family functioning subscale scores are from the Family Environment Scale [24]. *p , .05; **p , .01; ***p , .001) Variables Cohesion Expressiveness Conflict Independence Intellectual/cultural activities
Stress 2 0.60*** 2 0.65*** 0.38* 2 0.40** 2 0.39*
p , 0.01. Significant differences were found on two of the dimensions of the Family Environment Scale, indicating that caregivers reporting high stress also reported less cohesion or support, and less opportunity to discuss feelings than caregivers who reported low stress. Differences in family functioning based on duration of caregiving were also examined. The sample was divided at the median with shorter duration being from one to five years and longer duration being from six to 19 years. A MANOVA was conducted which yielded a non-significant difference between the groups, F (1, 29) 0.66, p ns. We investigated the relationship between stress and family functioning, the relationships of four demographic variables and stress, and the demographic variables and aspects of family functioning. Stress was significantly related to all five aspects of family functioning (see Table 3). Results regarding demographic characteristics indicated that patient age, caregiver age, caregiver education level, and duration of caregiving were not related to stress at statistically significant levels (see Table 4). However, there were significant relationships between some demographic variables and aspects of family functioning. The ages of patients and of caregivers were related to family conflict; older participants reported less conflict. Caregivers of older patients reported more support and more opportunity to express feelings than caregivers of younger patients. Finally, duration as a caregiver was related only to participation in activities, with longer term caregivers participating in fewer intellectual and cultural activities.
4. Discussion The research on stress among Parkinson’s caregivers has provided little information regarding specific stressors in this group and relationships between stress and family functioning. The present study explored these two important variables more closely, and considered their relationship to demographic characteristics. Not surprisingly, findings indicated that all stresses are not alike and that some aspects of stress among Parkinson’s caregivers are more common, and presumably more disturbing, than others. For example, the range of stressfulness ratings in this sample from the highest to the lowest provides some evidence of how strongly participants felt about the different facets of caregiving. As stress is such a broad concept, we felt it was important to examine the content of the items to learn more about what was most and least distressing for this sample of Parkinson’s caregivers. The items that were rated as most stressful appear to reflect a more intrapersonal theme such as anxiety, feelings of diminished social support, and fatigue. The items that were rated as least stressful appear to reflect a more interpersonal theme, such as the effect of the relative’s behavior on the caregiver, relationships with family members, and independence or privacy. It is important for physicians, social workers, and other health care professionals to recognize some of the more common and troublesome stresses experienced by Parkinson’s caregivers so they can provide the kind of support or adjunctive services that are needed. For example, in planning interventions for Parkinson’s caregivers, group leaders may want to specifically address the types of stresses endorsed most frequently by this group. Results also indicated that caregivers under high levels of stress reported poorer family functioning in some domains than caregivers reporting low levels of stress. Although these results make sense intuitively, the implications for clinical practice may not be so evident. Stress is related to the family environment; therefore, the patient may be affected indirectly by the stress of the caregiver. It is important for physicians and health care providers to be aware of the potential impact of stress on the caregiver, the home environment, and subsequently, on the patient’s well being.
Table 4 Relationships between demographic variables and stress, and between demographic variables and aspects of family functioning. (Stress data are from the Care Management Stress scale [22]. Scores could range from 25 to 125, with higher scores indicating more stress. Family functioning data is from the Family Environment Scale [24]. Higher scores on family functioning subscales indicate more of that dimension. Subscale scores could range from 4 to 20. *p , .05) Variables Stress Cohesion Expressiveness Conflict Independence Intellectual/cultural activities
Patient age 2 0.24 0.38* 0.35* 2 0.39* 0.10 0.23
Caregiver age
Caregiver education
2 0.11 0.09 0.03 2 0.39* 2 0.05 0.05
2 0.12 2 0.14 0.21 2 0.16 0.25 0.06
Duration of caregiving 0.20 2 0.18 2 0.13 2 0.09 2 0.19 2 0.37*
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One of the exploratory aspects of this study was to examine the relationship between stress and family functioning and the relationships of demographic variables to stress and family functioning variables. Perhaps the most interesting finding was that duration of caregiving was not related to stress. This result is notable because it suggests that degree of stress is not related to length of caregiving in a monotonic way, at least in this sample. This finding is counterintuitive and raises the question of the difference between duration of caregiving, as we investigated in this study, and duration of disease. It may be that duration of disease is the more accurate predictor of stress because it is less ambiguous than length of caregiving. It has been suggested that disease variables such as duration of disease, degree of dementia, and continued mutuality in the relationship should be investigated in order to learn more about predictors of caregiver stress [3,21]. Further research is needed to explore the dimensions of caregiving, personality, or support that allow some caregivers to be resilient or hardy in the face of difficult situations whereas other caregivers, facing less objectively trying circumstances, report greater stress. A significant relationship was found between providing care for older patients and greater family cohesion, more opportunity to express feelings, and less conflict. A relationship between older caregivers and less conflict was also found. There are a number of possible explanations for these results. It may be that as Parkinson’s patients grow older, some of the earlier scenarios that caused frustration and strife are diminished because of increasing disability, the onset of dementia, or adjustment to the situation by the caregiver. It is also possible that older persons experience, or report less conflict in general.
5. Future research Future research should consider sample selection very carefully. The participants in this study were not randomly selected, nor was this a representative sample of all Parkinson caregivers. Survey respondents in this study were attending an educational symposium lasting several hours, suggesting they were caring for patients who were relatively well and stable, thereby enabling them to come to the meeting. Another possibility is that participants were able to find someone to stay with the patient for the day, thus indicating they were healthy enough as caregivers to recognize their need to get out and were able to enlist needed support. Results indicated that participants in this sample were also likely to be more highly educated than the average Parkinson’s caregiver. Other sampling issues to consider in future research include attention to duration of disease as well as duration of caregiving. For example, inclusion criteria for the study stated that participants must have been the primary caregiver for at least one year and must provide at least five hours of care a day to the patient. Knowing how long
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caregivers had been providing 5 h of care per day and duration of disease would have helped clarify some of the findings in the data. Another issue to consider in future research is the possible difference in responses between male and female caregivers. Previous research has shown that women in general typically report more distress than men. This is also true for female caregivers [26]. Other differences between male and female caregivers may come from socialization, which results in women undertaking more nurturing tasks than men to the exclusion of other roles and activities [26]. Although it is often more difficult to recruit men than women for research participation, further clarification of gender issues in caregiving can be explored only by obtaining as balanced a sample as possible. The results of this study are based on cross-sectional data. A number of researchers have observed that caregiving is a phenomenon that evolves and changes and has different effects on individuals at different times [19]. Therefore, the most appropriate way to learn more about the process of caregiving is to observe it longitudinally. However, the purpose of our study was not to examine the long-term effects of caregiving, but rather to describe more specifically some of the critical elements in caring for a Parkinson’s patient. This we were able to do. Instrument selection is another important element of research. Future investigators studying caregiver stress may consider developing a scale specifically for persons dealing with Parkinson’s disease rather than using a generic scale. Although using a broader scale allows comparison with other groups of caregivers, items devised especially for Parkinson’s caregivers would provide even more useful information to physicians and other health care providers concerned with the welfare of the caregiver as well as the patient. Given that the Care Management Stress scale was found in a resource guide for Alzheimer’s caregivers [22] and that it has not been widely disseminated (i.e. no other references to it were found in a review of the literature), creating a similar checklist specifically for Parkinson’s caregivers may be advisable. Finally, using the Family Environment Scale with older populations may not provide the most helpful information in terms of practical significance and utility for health care providers. Several caregivers commented that they were somewhat confused by some of the items and felt the scale had more relevance for younger families. Future researchers are advised to look carefully at the items to determine the appropriateness of the Family Environment Scale for specific research purposes.
6. Implications for health care providers Results of this study are important for several reasons. First, several specific stresses that were disturbing to this sample of Parkinson’s caregivers were identified. These
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stresses were distinguished quite clearly from other, less problematic items on the Care Management Stress scale. Results also indicated differences in family functioning between caregivers reporting high and low levels of stress. These results point to two suggestions for health care providers to consider: (a) the importance of knowing what particular stresses are bothersome to caregivers [15,20], and (b) the deleterious effects of caregiver stress on the family, and by extension, on the care recipient. Assessing the stress level and well-being of the caregiver should be a priority for health care providers in order to identify and provide services for at-risk individuals [1–5,9,27]. In term of services, there are a number of interventions that might support caregivers in the midst of caring for a person with Parkinson’s disease. Support groups for caregivers provide the opportunity to discuss stresses and concerns with others in similar situations. Reconceptualizing depression among caregivers as losses to be grieved may provide new directions for some caregiver groups [16]. Doing a needs assessment to determine the overriding concerns of the target group may also be appropriate. Respite care for hours or days at a time allows some caregivers to rest and gain the perspective needed to return to caregiving [14]. Psychoeducational groups to provide support and inform family members about the normative strain and course of caregiving have also been suggested [27]. Interventions that have been piloted include a sixweek course designed to enhance communication between Parkinson’s couples. Care recipients reported no psychosocial changes over the period of the study while caregivers reported less depression from baseline to end of the course [28]. For additional suggestions, Zarit et al. [14] presented an overview and comments regarding caregiver interventions. Finally, it is important to assess the impact of interventions for caregivers on care recipients. Very little research has considered this aspect of caregiving [19]. For example, can interventions designed to help caregivers cope with the stresses and burdens of their roles improve the emotional or functional status not only of the caregivers but also of the care recipients? It is important to base the development of effective caregiver assistance programs on knowledge of factors that influence positive caregiving outcomes for all concerned.
[4]
[5]
[6]
[7]
[8]
[9]
[10]
[11]
[12] [13]
[14]
[15]
[16]
[17] [18]
[19]
[20]
References [1] Berry RA, Murphy JF. Well-being of caregivers of spouses with Parkinson’s disease. Clinical Nursing Research 1995;4:373–386. [2] Calder SA, Ebmeier KP, Stewart L, Crawford JR, Besson JAO. The prediction of stress in carers: The role of behaviour, reported self-care and dementia in patients with idiopathic Parkinson’s disease. International Journal of Geriatric Psychiatry 1991;6:737–742. [3] Carter JH, Stewart BJ, Archbold PG, Inoue I, Jaglin J, Lannon M, Rost-Ruffner E, Tennis M, McDermott MP, Amyot D, Barter R, Cornelius L, Demong C, Dobson J, Duff J, Erickson J, Gardiner N, Gauger L, Gray P, Kanigan B, Kiryluk B, Lewis P, Mistura K,
[21]
[22] [23] [24]
Malapira T, Pay M, Sheldon C, Winfield L, Wolfington-Shallow K, Zoog K, The Parkinson study group. Living with a person who has Parkinson’s disease: the spouse’s perspective by stage of disease. Movement Disorders 1998;13:20–28. McRae C, Sherry P. Cognitive-behavioral mediators of depression among caregivers of Parkinson patients. Paper presented at the Society of Behavioral Medicine Twelfth Annual Scientific Sessions, Washington, DC, 1991. O’Reilly F, Finnan F, Allwright S, Smith GD, Ben-Shlomo Y. The effects of caring for a spouse with Parkinson’s disease on social, psychological and physical well-being. British Journal of General Practice 1996;46:507–512. Seiler S, Perleth B, Gasser T, Ulm G, Oertel WH, Ellgring JH. Partnership and depression in Parkinson’s disease. Behavioural Neurology 1992;5:75–81. Sherry P, McRae C. Perceived stress of caregivers of Parkinson’s disease patients: a preliminary study. Poster presented at the First International Congress of Behavioral Medicine, Uppsala, Sweden, 1990. Speer DC. Predicting Parkinson’s disease patient and caregiver adjustment: preliminary findings. Behavior, Health and Aging 1993;3:139–146. Whetten-Goldstein K, Sloan F, Kulas E, Cutson T, Schenkman M. The burden of Parkinson’s disease on society, family and the individual. Journal of the American Geriatric Society 1997;45:844–849. Aneshensel CS, Pearlin LI, Mullan JT, Zarit SH, Whitlatch CJ. Profiles in caregiving: the unexpected career. San Diego, CA: Academic Press, 1995. Cattanach L, Tebes JK. The nature of elder impairment and its impact on family caregivers’ health and psychosocial functioning. The Gerontologist 1991;31:246–255. George LK. Caregiver stress studies: There really is more to learn. The Gerontologist 1990;30:580–581. Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. The Gerontologist 1990;30:583–594. Zarit SH, Johansson L, Jarrott SE. Family caregiving: stresses, social programs, and clinical interventions. In: Nordhus IH, VandenBos GR, Berg S, Fromholt P, editors. Clinical geropsychology. Washington, DC: American Psychological Association, 1998. pp. 345–360. Neundorfer M. Family caregivers of the frail elderly: Impact of caregiving on their health and implications for interventions. Family Community Health 1991;14:48–58. Walker RJ, Pomeroy EC. Depression or grief? The experience of caregivers of people with dementia. Health and Social Work 1996;21:247–254. Davis LL. Building a science of caring for caregivers. Family Community Health 1992;15:1–9. Dura JR, Haywood-Niler E, Kiecolt-Glaser JK. Spousal caregivers of persons with Alzheimer’s and Parkinson’s disease dementia: a preliminary comparison. The Gerontologist 1990;30:332–336. Malonebeach EE, Zarit SH. Current research issues in caregiving to the elderly. International Journal of Aging and Human Development 1991;32:103–114. Gatz M, Bengtson VL, Blum JJ. Caregiving families. In: Birren JE, Schaie KW, editors. Handbook of the psychology of aging, 3. New York: Academic Press, 1990. Rideout EM, Rodin GM, Littlefield CH. Stress, social support, and symptoms of depression in spouses of the medically ill. International Journal of Psychiatry in Medicine 1990;20:37–48. Gruetzner H. Alzheimer’s: a caregiver’s guide and sourcebook. New York: Wiley, 1988. McRae C, Roper K. Stress and family functioning among Alzheimer caregivers. Unpublished manuscript. Moos RH, Moos BS. Family environment scale manual: Development, applications, research. 2. Palo Alto, CA: Consulting Psychologists Press, 1986.
C. McRae et al. / Parkinsonism and Related Disorders 5 (1999) 69–75 [25] Dorn M. Stress, coping styles, family environment and adjustment in persons at risk for Huntington’s disease. Unpublished doctoral dissertation, University of Denver, Denver, 1990 [26] Biegel, DE, Sales E, Schulz R. Family caregiving in chronic illness. Newbury Park: Sage, 1991.
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[27] Monahan DJ, Hooker K. Caregiving and social support in two illness groups. Social Work 1997;42:278–287. [28] Brandow RK, McRae C, O’Brien CF. Improving quality of life: results of a relationship enhancement program for couples. Movement Disorders 1997;12(suppl 1):134.
Parkinsonism & Related Disorders Parkinsonism and Related Disorders 5 (1999) 69–75
Stress and family functioning among caregivers of persons with Parkinson’s disease C. McRae*, P. Sherry, K. Roper College of Education, University of Denver, Denver, CO 80208, USA Received 31 July 1998; received in revised form 16 February 1999; accepted 16 February 1999
Abstract This study investigated components of caregiving that cause distress among Parkinson’s caregivers and explored relationships between stress and family functioning. Fifty caregivers completed two self-report measures designed to assess caregiver stress and characteristics of the family environment. Differences in terms of family environment were found between caregivers who reported high and low stress. Certain aspects of caregiving were reported to be more distressing than others, and demographic characteristics were related to family functioning. Duration of the caregiving was not related to stress and there were no differences in family environment based on duration. These results have implications for clinical practice and the development of interventions for Parkinson’s caregivers. q 1999 Elsevier Science Ltd. All rights reserved. Keywords: Parkinson’s disease; Caregiving; Stress
1. Introduction Caring for a family member with Parkinson’s disease is a long, stressful process which taxes emotional, physical and financial resources [1–9]. Although there is no cure for Parkinson’s disease at present, current pharmacological and surgical treatments are able to moderate symptoms in many people for relatively long periods of time; thus, prolonging individual lives and extending the time of necessary care provision. Stress is a well documented and researched component of caregiving, particularly among caregivers of persons with chronic disease [10–14]. It has generally been found that caregivers experience more stress and emotional difficulties, such as depression and anticipatory grief, than the general population [15–16]. In several studies of Parkinson’s caregivers, results indicated the disease is very intrusive in caregivers’ lives [1–3,5]. Factors related to the disease and its progression are often viewed as predictors of caregiver adjustment. For example, caregivers were found to accumulate more strain and become more depressed as the care recipient’s disease progressed and physical functioning declined [3]. The findings in this study also indicated that caregivers reported a decline in their own physical health. * Corresponding author. Tel.: 1 303-871-2475; fax: 1 303-871-4456. E-mail address: [email protected] (C. McRae)
Similar studies have found motor impairment and physical functioning of care recipients to be predictive of caregiver distress [1,2]. O’Reilly [5] reported that caregivers had less social contact with friends over time as the need for care provision increased. Other researchers have suggested that environmental and caregiver characteristics contribute substantially to caregiver adjustment. A review of the caregiving literature by Davis [17] noted several factors that may cause distress to caregivers: the difficulty of juggling multiple caregiver, social, and familial roles while trying to maintain a sense of normalcy; the distressing nature of illnesses involving cognitive impairment; and having to perform direct patient care involving intimate bodily contact. Cattanach and Tebes [11] suggested that factors such as gender, living arrangement, and familial generation have greater impact on the caregiver’s health and psychosocial functioning than the care recipient’s type of impairment. This view is supported by research related to Parkinson’s disease, which found that caregivers’ current psychosocial adjustment is more predictive of future well being than patient characteristics or impairment [8,18]. Although it is obvious that caring for a person with Parkinson’s disease is stressful, research has not examined the specific factors that may cause difficulties for the caregivers [1,8,19]. Very little is known about the specific strains on Parkinson’s caregivers and frequently the research findings are contradictory. Davis [17] constructed
1353-8020/99/$ - see front matter q 1999 Elsevier Science Ltd. All rights reserved. PII: S1353-802 0(99)00012-7
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a profile of the caregiver at high risk for increased stress and burnout. Many of the factors indicating greater vulnerability are demographic characteristics. Typically, middle-aged or older women are at most risk, as well as individuals who live with the care recipient and are the sole care provider. In addition, individuals at high risk for burnout tend to have limited personal, social, and/or financial resources. Along with our lack of knowledge about specific stressors affecting Parkinson’s caregivers and who might be most vulnerable to caregiver stress, we know very little about the relationship between caregiver stress and the family environment. Studies in the caregiving literature have tended to focus on the primary caregiver and have not examined other aspects of family functioning, which might affect the quality of caregiving as well as the care recipient [19]. A number of authors have called for research to examine the broader family perspective in chronic illness and caregiving [9,20–21]. Preliminary studies suggest relationships between family support and adjustment of the caregiver, but these investigations have not examined particular variables that influence adjustment [8]. The primary aim of the present study was to learn more about the sources of stress among caregivers of persons with Parkinson’s disease and to investigate relationships among demographic characteristics, stress, and family functioning. These specific questions were addressed: 1. What are the most and least stressful aspects of being a caregiver of someone with Parkinson’s disease? 2. Are there differences in family functioning between caregivers who report high and low stress? 3. Are there differences in level of stress and family functioning depending upon duration of caregiving? 4. Are there significant relationships between the demographic variables of patient age, caregiver age, caregiver education, and duration of caregiving and level of stress, and between those demographic variables and specific aspects of family functioning?
2. Method 2.1. Participants The sample of Parkinson’s caregivers was drawn from persons attending a regional educational symposium for caregivers of persons with Parkinson’s disease in a large metropolitan area. To be included in the study, participants had to have been the primary caregiver for a Parkinson’s patient for at least one year prior to the survey. Participants also had to provide at least 5 hours of care a day to the patient. All persons at the conference were invited to participate in the research project. Of the 98 persons attending, 69 indicated they met the criteria for inclusion in the study; out of which 50 (72%) completed and returned the questionnaires on the day of the symposium, ensuring a
representative sample of individuals attending the conference that day. Responses were received from nine men (18%) and 41 women (82%). The average age of the caregivers was 63.7 years (SD 10.9), with ages ranging from 37 to 85. The average age of the care recipient was 70 years (SD 10.5), with ages ranging from 43 to 89. The length of time spent as a caregiver for a Parkinson’s patient ranged from one to 19 years, with an average duration of 5.8 years (SD 4.3). This sample of caregivers reported an average educational level of 14 years (SD 2.5), with a range from 4 to 21 years. 2.2. Measures 2.2.1. Care Management Stress scale (CMS; 22) This instrument was designed to gather data about particular areas of caregiver stress. The Care Management Stress scale consists of 25 items scored on a Likert scale ranging from 1 (never) to 5 (nearly always), with higher scores indicating greater stress. Total possible scores range from 25 to 125. Sample items include “I am uncomfortable leaving my relative alone” and “I get easily upset with my relative.” The instrument has been used with caregivers of persons with Alzheimer’s disease and appears to have adequate reliability and validity [23]. Reliability (coefficient alpha) of the scale for this sample was 94. 2.2.2. Family Environment Scale-Short Form (FES; 24) The Family Environment Scale-Short Form is a 40 item self-report inventory with 10 subscales. This instrument is commonly used to assess perceived social and environmental characteristics of families, including those with chronic medical illnesses [24]. It is one of nine social climate scales developed by Moos and Moos [24] to assess a variety of social environments. Using modifications made by Dorn [25] in a study of persons at risk for Huntington’s disease and their spouses, the scoring of items was changed from the original true/false format to a five-point Likert scale ranging from 1 (very strongly agree) to 5 (very strongly disagree). Each subscale is composed of four items, resulting in total possible scores that can range from 4 to 20. In this study, estimates of reliability (coefficient alpha) for the 10 subscales ranged from .21 to .74. As a result of the low reliability of some of the scales for this sample, only the five subscales with the highest reliability (ranging from .65 to .74) were included in further analyses. These subscales were Cohesion, Expressiveness, Conflict, Independence, and Intellectual/Cultural Activities. Sample questions for each of these subscales are given below: 1. Cohesion: “Family members really help and support one another.” 2. Expressiveness: “We say anything we want to around home.” 3. Conflict: “Family members hardly ever lose their tempers.”
C. McRae et al. / Parkinsonism and Related Disorders 5 (1999) 69–75 Table 1 Rank order of stresses reported by Parkinson’s disease caregivers. (Means indicate frequency of that variable: 1 never; 5 nearly always) Variable
Mean
SD
I’m afraid of what the future will be. I’m feeling more tense and nervous. Worries bother me a lot. I would like to see friends more. I get tired and worn out doing everything. Everyone fails to appreciate what is happening. I’m uncomfortable leaving my relative alone. I need more rest and sleep. It is hard now to accept this diagnosis. Family fail to understand what I’m experiencing. I have a lot of financial concerns. It’s hard for my family to accept this diagnosis. I feel I am getting isolated. I feel I need more help. Family members could help a lot more. I feel my health is suffering because of this. I feel abandoned by doctors/professionals. I feel I need more privacy. I’m unable to get out to do what I need to. Decisions are hard for me to make. My relative asks too much of me. I get easily upset with my relative. My relative’s behavior frightens me. Family members think I should do more. I’m embarrassed by my relative’s behavior. Total score
3.64 3.50 3.30 3.15 3.14 3.06 3.04 3.00 2.98 2.94 2.92 2.90 2.88 2.82 2.81 2.80 2.75 2.73 2.67 2.65 2.63 2.62 2.35 2.15 1.80 69.58
1.10 1.11 1.18 0.98 1.08 1.10 1.35 1.37 1.38 1.30 1.35 1.23 1.29 1.15 1.19 1.22 1.36 1.23 1.25 1.00 1.33 1.09 1.39 1.26 1.01 21.15
4. Independence: “We do not do things on our own very often in our family.” 5. Intellectual/cultural activities: “We rarely go to lectures, plays or concerts.” The items with negative wording (see sample items 3–5 above) were reverse scored before being summed. Items were coded such that high subscale scores consistently reflected more of that particular domain. Thus, for the Conflict subscale, higher scores represent more problematic functioning. For the other subscales, higher scores indicate more adaptive family functioning. 2.3. Statistical analyses To investigate the relative frequency or stressfulness of
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the individual items in the Care Management Stress scale, means and standard deviations of the 25 items were calculated. Multivariate analysis of variance (MANOVA) was used to investigate differences in family functioning between caregivers reporting high and low stress and longer and shorter duration of caregiving. Pearson product moment correlations were used to explore relationships between demographic variables and caregiver stress, and between demographic variables and aspects of family functioning.
3. Results Descriptive information and the rank order of average scores for items in the Care Management Stress scale are shown in Table 1. It is interesting to note the wide variation in scores from the most stressful item (M 3.64) to the least stressful item (M 1.8). It appears that the items indicating high stress are related to personal concerns and anxiety (e.g., “I’m afraid of what the future will be,” “I’m feeling more tense and nervous,” and “Worries bother me a lot”), whereas the items associated with low stress are concerned with more external variables (“I’m embarrassed by my relative’s behavior,” “Family members think I should do more,” and “My relative’s behavior frightens me”). After observing the wide range of scores for the items in Table 1, we examined differences between the eight most stressful items (the top third) and the eight least stressful items (the bottom third). Results of a paired t-test (t 10.54, p , 0.001) indicated there were significant differences in the types of stresses endorsed by this sample. In other words, some items were reported to be a great deal more stressful than others. To determine whether there were differences in family functioning between subgroups reporting high and low stress, we divided the sample into thirds based on total scores on the Care Management Stress scale. Scores in the top and bottom thirds of the distribution were designated high and low stress, respectively. A MANOVA was conducted which yielded a significant overall difference between the groups, F (1, 29) 5.72, p 0.001 (effect size R 0.53). Further analyses of the univariate tests (see Table 2) were completed using a Bonferroni correction to reduce Type 1 error inflation due to multiple tests,
Table 2 Comparison of Family Environment Scale subscale means for caregiver groups who reported high and low stress. (Higher scores indicate more of that dimension. Subscale scores could range from 4 to 20. ***p , .001) Family Environment Scale subscales
Cohesion Expressiveness Conflict Independence Intellectual/cultural activities
High stress caregivers
Low stress caregivers
Mean
SD
Mean
SD
Univariate F
Eta 2
10.06 9.35 10.71 12.47 11.47
3.49 2.78 3.92 4.06 3.83
15.21 13.36 7.50 15.36 14.79
2.46 1.91 2.90 2.53 3.07
21.65*** 20.86*** 6.45 5.34 6.86
.43 .42 .18 .16 .19
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Table 3 Relationships between total stress score and aspects of family functioning. (Total stress score is from the Care Management Stress scale [22]. Family functioning subscale scores are from the Family Environment Scale [24]. *p , .05; **p , .01; ***p , .001) Variables Cohesion Expressiveness Conflict Independence Intellectual/cultural activities
Stress 2 0.60*** 2 0.65*** 0.38* 2 0.40** 2 0.39*
p , 0.01. Significant differences were found on two of the dimensions of the Family Environment Scale, indicating that caregivers reporting high stress also reported less cohesion or support, and less opportunity to discuss feelings than caregivers who reported low stress. Differences in family functioning based on duration of caregiving were also examined. The sample was divided at the median with shorter duration being from one to five years and longer duration being from six to 19 years. A MANOVA was conducted which yielded a non-significant difference between the groups, F (1, 29) 0.66, p ns. We investigated the relationship between stress and family functioning, the relationships of four demographic variables and stress, and the demographic variables and aspects of family functioning. Stress was significantly related to all five aspects of family functioning (see Table 3). Results regarding demographic characteristics indicated that patient age, caregiver age, caregiver education level, and duration of caregiving were not related to stress at statistically significant levels (see Table 4). However, there were significant relationships between some demographic variables and aspects of family functioning. The ages of patients and of caregivers were related to family conflict; older participants reported less conflict. Caregivers of older patients reported more support and more opportunity to express feelings than caregivers of younger patients. Finally, duration as a caregiver was related only to participation in activities, with longer term caregivers participating in fewer intellectual and cultural activities.
4. Discussion The research on stress among Parkinson’s caregivers has provided little information regarding specific stressors in this group and relationships between stress and family functioning. The present study explored these two important variables more closely, and considered their relationship to demographic characteristics. Not surprisingly, findings indicated that all stresses are not alike and that some aspects of stress among Parkinson’s caregivers are more common, and presumably more disturbing, than others. For example, the range of stressfulness ratings in this sample from the highest to the lowest provides some evidence of how strongly participants felt about the different facets of caregiving. As stress is such a broad concept, we felt it was important to examine the content of the items to learn more about what was most and least distressing for this sample of Parkinson’s caregivers. The items that were rated as most stressful appear to reflect a more intrapersonal theme such as anxiety, feelings of diminished social support, and fatigue. The items that were rated as least stressful appear to reflect a more interpersonal theme, such as the effect of the relative’s behavior on the caregiver, relationships with family members, and independence or privacy. It is important for physicians, social workers, and other health care professionals to recognize some of the more common and troublesome stresses experienced by Parkinson’s caregivers so they can provide the kind of support or adjunctive services that are needed. For example, in planning interventions for Parkinson’s caregivers, group leaders may want to specifically address the types of stresses endorsed most frequently by this group. Results also indicated that caregivers under high levels of stress reported poorer family functioning in some domains than caregivers reporting low levels of stress. Although these results make sense intuitively, the implications for clinical practice may not be so evident. Stress is related to the family environment; therefore, the patient may be affected indirectly by the stress of the caregiver. It is important for physicians and health care providers to be aware of the potential impact of stress on the caregiver, the home environment, and subsequently, on the patient’s well being.
Table 4 Relationships between demographic variables and stress, and between demographic variables and aspects of family functioning. (Stress data are from the Care Management Stress scale [22]. Scores could range from 25 to 125, with higher scores indicating more stress. Family functioning data is from the Family Environment Scale [24]. Higher scores on family functioning subscales indicate more of that dimension. Subscale scores could range from 4 to 20. *p , .05) Variables Stress Cohesion Expressiveness Conflict Independence Intellectual/cultural activities
Patient age 2 0.24 0.38* 0.35* 2 0.39* 0.10 0.23
Caregiver age
Caregiver education
2 0.11 0.09 0.03 2 0.39* 2 0.05 0.05
2 0.12 2 0.14 0.21 2 0.16 0.25 0.06
Duration of caregiving 0.20 2 0.18 2 0.13 2 0.09 2 0.19 2 0.37*
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One of the exploratory aspects of this study was to examine the relationship between stress and family functioning and the relationships of demographic variables to stress and family functioning variables. Perhaps the most interesting finding was that duration of caregiving was not related to stress. This result is notable because it suggests that degree of stress is not related to length of caregiving in a monotonic way, at least in this sample. This finding is counterintuitive and raises the question of the difference between duration of caregiving, as we investigated in this study, and duration of disease. It may be that duration of disease is the more accurate predictor of stress because it is less ambiguous than length of caregiving. It has been suggested that disease variables such as duration of disease, degree of dementia, and continued mutuality in the relationship should be investigated in order to learn more about predictors of caregiver stress [3,21]. Further research is needed to explore the dimensions of caregiving, personality, or support that allow some caregivers to be resilient or hardy in the face of difficult situations whereas other caregivers, facing less objectively trying circumstances, report greater stress. A significant relationship was found between providing care for older patients and greater family cohesion, more opportunity to express feelings, and less conflict. A relationship between older caregivers and less conflict was also found. There are a number of possible explanations for these results. It may be that as Parkinson’s patients grow older, some of the earlier scenarios that caused frustration and strife are diminished because of increasing disability, the onset of dementia, or adjustment to the situation by the caregiver. It is also possible that older persons experience, or report less conflict in general.
5. Future research Future research should consider sample selection very carefully. The participants in this study were not randomly selected, nor was this a representative sample of all Parkinson caregivers. Survey respondents in this study were attending an educational symposium lasting several hours, suggesting they were caring for patients who were relatively well and stable, thereby enabling them to come to the meeting. Another possibility is that participants were able to find someone to stay with the patient for the day, thus indicating they were healthy enough as caregivers to recognize their need to get out and were able to enlist needed support. Results indicated that participants in this sample were also likely to be more highly educated than the average Parkinson’s caregiver. Other sampling issues to consider in future research include attention to duration of disease as well as duration of caregiving. For example, inclusion criteria for the study stated that participants must have been the primary caregiver for at least one year and must provide at least five hours of care a day to the patient. Knowing how long
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caregivers had been providing 5 h of care per day and duration of disease would have helped clarify some of the findings in the data. Another issue to consider in future research is the possible difference in responses between male and female caregivers. Previous research has shown that women in general typically report more distress than men. This is also true for female caregivers [26]. Other differences between male and female caregivers may come from socialization, which results in women undertaking more nurturing tasks than men to the exclusion of other roles and activities [26]. Although it is often more difficult to recruit men than women for research participation, further clarification of gender issues in caregiving can be explored only by obtaining as balanced a sample as possible. The results of this study are based on cross-sectional data. A number of researchers have observed that caregiving is a phenomenon that evolves and changes and has different effects on individuals at different times [19]. Therefore, the most appropriate way to learn more about the process of caregiving is to observe it longitudinally. However, the purpose of our study was not to examine the long-term effects of caregiving, but rather to describe more specifically some of the critical elements in caring for a Parkinson’s patient. This we were able to do. Instrument selection is another important element of research. Future investigators studying caregiver stress may consider developing a scale specifically for persons dealing with Parkinson’s disease rather than using a generic scale. Although using a broader scale allows comparison with other groups of caregivers, items devised especially for Parkinson’s caregivers would provide even more useful information to physicians and other health care providers concerned with the welfare of the caregiver as well as the patient. Given that the Care Management Stress scale was found in a resource guide for Alzheimer’s caregivers [22] and that it has not been widely disseminated (i.e. no other references to it were found in a review of the literature), creating a similar checklist specifically for Parkinson’s caregivers may be advisable. Finally, using the Family Environment Scale with older populations may not provide the most helpful information in terms of practical significance and utility for health care providers. Several caregivers commented that they were somewhat confused by some of the items and felt the scale had more relevance for younger families. Future researchers are advised to look carefully at the items to determine the appropriateness of the Family Environment Scale for specific research purposes.
6. Implications for health care providers Results of this study are important for several reasons. First, several specific stresses that were disturbing to this sample of Parkinson’s caregivers were identified. These
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stresses were distinguished quite clearly from other, less problematic items on the Care Management Stress scale. Results also indicated differences in family functioning between caregivers reporting high and low levels of stress. These results point to two suggestions for health care providers to consider: (a) the importance of knowing what particular stresses are bothersome to caregivers [15,20], and (b) the deleterious effects of caregiver stress on the family, and by extension, on the care recipient. Assessing the stress level and well-being of the caregiver should be a priority for health care providers in order to identify and provide services for at-risk individuals [1–5,9,27]. In term of services, there are a number of interventions that might support caregivers in the midst of caring for a person with Parkinson’s disease. Support groups for caregivers provide the opportunity to discuss stresses and concerns with others in similar situations. Reconceptualizing depression among caregivers as losses to be grieved may provide new directions for some caregiver groups [16]. Doing a needs assessment to determine the overriding concerns of the target group may also be appropriate. Respite care for hours or days at a time allows some caregivers to rest and gain the perspective needed to return to caregiving [14]. Psychoeducational groups to provide support and inform family members about the normative strain and course of caregiving have also been suggested [27]. Interventions that have been piloted include a sixweek course designed to enhance communication between Parkinson’s couples. Care recipients reported no psychosocial changes over the period of the study while caregivers reported less depression from baseline to end of the course [28]. For additional suggestions, Zarit et al. [14] presented an overview and comments regarding caregiver interventions. Finally, it is important to assess the impact of interventions for caregivers on care recipients. Very little research has considered this aspect of caregiving [19]. For example, can interventions designed to help caregivers cope with the stresses and burdens of their roles improve the emotional or functional status not only of the caregivers but also of the care recipients? It is important to base the development of effective caregiver assistance programs on knowledge of factors that influence positive caregiving outcomes for all concerned.
[4]
[5]
[6]
[7]
[8]
[9]
[10]
[11]
[12] [13]
[14]
[15]
[16]
[17] [18]
[19]
[20]
References [1] Berry RA, Murphy JF. Well-being of caregivers of spouses with Parkinson’s disease. Clinical Nursing Research 1995;4:373–386. [2] Calder SA, Ebmeier KP, Stewart L, Crawford JR, Besson JAO. The prediction of stress in carers: The role of behaviour, reported self-care and dementia in patients with idiopathic Parkinson’s disease. International Journal of Geriatric Psychiatry 1991;6:737–742. [3] Carter JH, Stewart BJ, Archbold PG, Inoue I, Jaglin J, Lannon M, Rost-Ruffner E, Tennis M, McDermott MP, Amyot D, Barter R, Cornelius L, Demong C, Dobson J, Duff J, Erickson J, Gardiner N, Gauger L, Gray P, Kanigan B, Kiryluk B, Lewis P, Mistura K,
[21]
[22] [23] [24]
Malapira T, Pay M, Sheldon C, Winfield L, Wolfington-Shallow K, Zoog K, The Parkinson study group. Living with a person who has Parkinson’s disease: the spouse’s perspective by stage of disease. Movement Disorders 1998;13:20–28. McRae C, Sherry P. Cognitive-behavioral mediators of depression among caregivers of Parkinson patients. Paper presented at the Society of Behavioral Medicine Twelfth Annual Scientific Sessions, Washington, DC, 1991. O’Reilly F, Finnan F, Allwright S, Smith GD, Ben-Shlomo Y. The effects of caring for a spouse with Parkinson’s disease on social, psychological and physical well-being. British Journal of General Practice 1996;46:507–512. Seiler S, Perleth B, Gasser T, Ulm G, Oertel WH, Ellgring JH. Partnership and depression in Parkinson’s disease. Behavioural Neurology 1992;5:75–81. Sherry P, McRae C. Perceived stress of caregivers of Parkinson’s disease patients: a preliminary study. Poster presented at the First International Congress of Behavioral Medicine, Uppsala, Sweden, 1990. Speer DC. Predicting Parkinson’s disease patient and caregiver adjustment: preliminary findings. Behavior, Health and Aging 1993;3:139–146. Whetten-Goldstein K, Sloan F, Kulas E, Cutson T, Schenkman M. The burden of Parkinson’s disease on society, family and the individual. Journal of the American Geriatric Society 1997;45:844–849. Aneshensel CS, Pearlin LI, Mullan JT, Zarit SH, Whitlatch CJ. Profiles in caregiving: the unexpected career. San Diego, CA: Academic Press, 1995. Cattanach L, Tebes JK. The nature of elder impairment and its impact on family caregivers’ health and psychosocial functioning. The Gerontologist 1991;31:246–255. George LK. Caregiver stress studies: There really is more to learn. The Gerontologist 1990;30:580–581. Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. The Gerontologist 1990;30:583–594. Zarit SH, Johansson L, Jarrott SE. Family caregiving: stresses, social programs, and clinical interventions. In: Nordhus IH, VandenBos GR, Berg S, Fromholt P, editors. Clinical geropsychology. Washington, DC: American Psychological Association, 1998. pp. 345–360. Neundorfer M. Family caregivers of the frail elderly: Impact of caregiving on their health and implications for interventions. Family Community Health 1991;14:48–58. Walker RJ, Pomeroy EC. Depression or grief? The experience of caregivers of people with dementia. Health and Social Work 1996;21:247–254. Davis LL. Building a science of caring for caregivers. Family Community Health 1992;15:1–9. Dura JR, Haywood-Niler E, Kiecolt-Glaser JK. Spousal caregivers of persons with Alzheimer’s and Parkinson’s disease dementia: a preliminary comparison. The Gerontologist 1990;30:332–336. Malonebeach EE, Zarit SH. Current research issues in caregiving to the elderly. International Journal of Aging and Human Development 1991;32:103–114. Gatz M, Bengtson VL, Blum JJ. Caregiving families. In: Birren JE, Schaie KW, editors. Handbook of the psychology of aging, 3. New York: Academic Press, 1990. Rideout EM, Rodin GM, Littlefield CH. Stress, social support, and symptoms of depression in spouses of the medically ill. International Journal of Psychiatry in Medicine 1990;20:37–48. Gruetzner H. Alzheimer’s: a caregiver’s guide and sourcebook. New York: Wiley, 1988. McRae C, Roper K. Stress and family functioning among Alzheimer caregivers. Unpublished manuscript. Moos RH, Moos BS. Family environment scale manual: Development, applications, research. 2. Palo Alto, CA: Consulting Psychologists Press, 1986.
C. McRae et al. / Parkinsonism and Related Disorders 5 (1999) 69–75 [25] Dorn M. Stress, coping styles, family environment and adjustment in persons at risk for Huntington’s disease. Unpublished doctoral dissertation, University of Denver, Denver, 1990 [26] Biegel, DE, Sales E, Schulz R. Family caregiving in chronic illness. Newbury Park: Sage, 1991.
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[27] Monahan DJ, Hooker K. Caregiving and social support in two illness groups. Social Work 1997;42:278–287. [28] Brandow RK, McRae C, O’Brien CF. Improving quality of life: results of a relationship enhancement program for couples. Movement Disorders 1997;12(suppl 1):134.