Family Caregiving for Husbands with Stroke: An Occupational Perspective on Leisure in the Stress Process Kathy Kniepmann, OTD, MPH, EdM, OTR/L, CHES keywords: Stress Process Model, stroke, family caregiving ABSTRACT

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This study adapted the Stress Process Model with occupational assessments to identify stress, leisure changes, burden levels, and health-related quality of life in 20 caregivers of workingage husbands with mild to moderate stroke in the past 2 years. Primary stress was based on participants’ perceptions of their husbands’ functional behavior skills. Secondary strain was indicated by reduction of leisure activities that the caregivers wished to still do or do more— a phenomena labeled Leisure Loss. Outcomes were burden and health-related quality of life. Wives whose husbands had more functional behavior difficulties experienced significantly more Leisure Loss. Wives with Leisure Loss had significantly higher burden scores than those who continued their leisure participation, but health-related quality of life scores were not different. These findings suggest that leisure participation is important as health promotion for family caregivers, with potential to enhance health of the relative with stroke and the entire family. [OTJR: Occupation, Participation and Health. 2014; 34(3):131-140.]

troke is a leading cause of disability worldwide, and even with mild stroke, most survivors face difficulties with community reintegration and social participation (Tellier, Rochette, & Lefebvre, 2011; Wolf, Baum, & Connor, 2009). These difficulties impact families in a variety of ways (Palmer & Glass, 2003). The majority of people with stroke return home where relatives provide guidance and support (Palmer & Glass, 2003; Tellier et al., 2011). Stroke effects extend far beyond the diagnosed individuals to change lifestyles and challenge the health of primary caregivers. While caregiving can provide a sense of reward and accomplishment, many relatives also report difficulties (Greenwood, Mackenzie, Cloud, & Wilson, 2009; Kinney & Stephens, 1989; Palmer &

Glass, 2003). Most research about caregivers of people with stroke has been about older adults, but a large and growing proportion of survivors are working age (Wolf et al., 2009). Family caregivers for these younger people face challenges that may disrupt life trajectories with detrimental effects on social participation and health. Much less is known about this population. Little or no preparation is provided for family caregivers of people with stroke, as they are confronted with many new responsibilities and altered routines (Coombs, 2007; Perry & Middleton, 2011; Tooth, McKenna, Barnett, Prescott, & Murphy, 2005). In one study, over half of family caregivers reported spending 40 or more hours weekly to help relatives with stroke (Perry & Middleton, 2011). An-

Dr. Kniepmann is Instructor in Occupational Therapy and Neurology, Washington University School of Medicine, St. Louis, Missouri. Submitted: April 30, 2013; Accepted: February 27, 2014; Posted online: March 31, 2014 The author has no financial or proprietary interest in the materials presented herein. Address correspondence to Kathy Kniepmann, OTD, MPH, EdM, OTR/L, CHES, Instructor in Occupational Therapy and Neurology, Washington University School of Medicine, 4444 Forest Park Avenue, Box 8505, St. Louis, MO, ZIP 63108; e-mail: [email protected] doi:10.3928/15394492-20140325-01

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other study found that, besides personal assistance, spouses often performed household activities that were previously done by the person with stroke (Coombs, 2007). Demands of caregiving can limit caregivers’ time for themselves and restrict participation in other activities, particularly leisure (Cao et al., 2010; Forsberg-Wärleby, Möller, & Blomstrand, 2004; Rudman, Hebert, & Reid, 2006). Caregivers whose spouses with stroke used wheelchairs reported experiencing a “restricted occupational world;” they were reluctant to do things without their spouses even if it meant dropping enjoyable, valued activities (Rudman et al., 2006, p. 141). Another study found that wives focused on therapeutic needs of their husbands with stroke and reduced their own high-demand leisure or fitness activities (Cao et al., 2010). During the first 4 months after a spouse’s stroke, caregivers’ leisure satisfaction decreased significantly, and there was minimal change 1 year later (Forsberg-Wärleby et al., 2004). Leisure participation has been associated with better health and quality of life (Berger, 2011; Everard, Lach, Fisher, & Baum, 2000; Pereira & Stagnitti, 2008; Pressman et al., 2009). Frequency of participation in multiple types of enjoyable leisure activity was associated with better psychosocial and physical health (Pressman et al., 2009). Older adults spending time on low-demand leisure activities had better mental health, whereas participation in high-demand leisure activities was associated with better physical health (Everard et al., 2000). Healthy older adults felt that engagement in meaningful leisure activity was strongly linked with their health and quality of life; the effects of relaxation, socialization, and fun contributed to an overall sense of well-being (Pereira & Stagnitti, 2008). A study by Berger (2011) found that leisure engagement is important for continuing social relationships, building new connections, and maintaining one’s identity. In her qualitative study of older adults with vision loss, Berger (2011) found that constricted leisure participation led to isolation and decreased quality of life. Caregivers report subjective and objective benefits of leisure participation (Chattillion et al., 2012; Gahagan, Loppie, Rehman, Maclellan, & Side, 2007). Caregivers for relatives with dementia who were more satisfied with their leisure participation had lower levels of norepinephrine and decreased cardiovascular risk compared with caregivers who had similar demands but less leisure satisfaction (Chattillion et al., 2012). Although they felt that leisure activities provided social support and spiritual sustenance, wives of men with stroke limited or elimi-

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nated leisure activities due to guilt about taking time for themselves or leaving their spouses alone (Gahagan et al., 2007). Physically active leisure activities have been associated with better physical health and less stress among older caregivers; it seemed to mitigate the adverse effects of heavy caregiving demands (Mannell, Salmoni, & Martin, 2002). Caregivers involved in physically active leisure reported better physiological health and sleep quality (King, Baumann, O’Sullivan, Wilcox, & Castro, 2002). Leisure deprivation can have adverse effects on overall health and well-being (Loucks-Atkinson, Kleiber, & Williamson, 2006). Loucks-Atkinson et al. (2006) investigated activity changes in family caregivers of relatives 60 and older. They defined expressive activities as sports/recreation, socialization with friends, hobbies, and other activities that contribute to friendships. Restriction of such expressive activities was associated with depression, physical health symptoms, and lower perceived health status among caregivers. Leisure restriction has been associated with worse mental and physical health among caregivers. Common barriers that interfered with leisure participation included lack of a partner, fatigue, and stress (Dunn & Strain, 2001; Losada et al., 2010). Systematic reviews of quantitative research on family caregiving reveal a lack of conceptual foundations or theories to guide investigations (Gaugler, 2010; Greenwood, Mackenzie, Cloud, & Wilson, 2008). The Caregiver Stress Process (Pearlin, Mullan, Semple, & Skaff, 1990) proposes a theoretical model with concepts that influence caregiver health and quality of life outcomes. Primary stress results from functional limitations, dependency, problematic behaviors, and cognitive difficulties in the relative. Primary stressors can directly affect caregivers’ health and quality of life. Such stressors can accumulate to cause secondary strains such as social isolation and loss of self when caregiving increasingly takes over one’s time, energy, and identity (Pearlin et al., 1990). Caregiver outcomes in this model are burden and health-related quality of life. The health of family caregivers can have a direct and indirect impact on the health and well-being of their relatives with a stroke or other chronic conditions. Findings from a study of 146 couples suggested that psychological well-being of family caregivers influences the well-being of relatives with stroke (Grant et al., 2013). Similarly, Barskova and Wilz (2007) found that family caregiver attitudes and emotional health contribute to cognitive and psychological recovery of their relatives with stroke. Caregiver life satisfaction was a leading predictor

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for institutionalization of relatives with dementia (Buhr, Kuchibhatla, & Clipp, 2006). This study was designed to examine whether the Stress Process Model of caregiving can be combined with occupation-focused assessments and the Person-Environment-Occupation-Performance model (Baum & Christiansen, 2005) to identify the association of leisure changes with caregiver outcomes. Figure 1 shows an adaptation of the Stress Process Model of caregiving with occupational assessments. Although research shows that leisure is related to health and quality of life, little is known about the nature of that relationship in family caregivers for working-age survivors of stroke. This study investigated two hypotheses: 1. Caregivers for working-age husbands with stroke will be more likely to quit or cut back on leisure activities if they have more primary stress from their husbands’ difficulty with functional behavior. 2. Caregivers with the secondary strain of Leisure Loss will report worse stress process outcomes shown by higher burden scores and lower physical and mental health scores.

Method This research project analyzed data from a quantitative, cross-sectional pilot study about occupational loss in wives of men with stroke (Kniepmann, 2012). Caregivers were recruited though the Cognitive Rehabilitation Research Group database. Eligibility criteria were: female spouses of working-age men 65 or younger who had survived a mild to moderate stroke during the past 6 to 24 months, with no prior history of stroke. Following approval of the study protocol by the University’s Human Research Protection Office, information about the study was mailed to individuals who met the inclusion criteria. Telephone contact followed to invite participation. Each potential participant read, discussed, and signed an informed consent form before any data collection began. Data were collected during a single study session. Materials/Measurements Demographic questions asked about the caregiver’s age, education, and participation in employment and volunteer activity. Primary stress arises from new responsibilities of assisting a family member based on the type and amount of effort required. For this study, primary stressors were measured with the Lawton Instrumental Activities of Daily Living (IADL) Scale (Lawton & Brody, 1969) and the Functional Behav-

Figure 1. Caregiving and the stress process: An occupational perspective.

ior profile (FBP, Baum & Edwards, 2000). The Lawton IADL Scale includes eight activities: telephone use, shopping, food preparation, housework, laundry, transportation, medication use, and money management. Caregivers reported their husband’s performance on each of those activities as needs no help, needs some help, or unable to do at all. The FBP measures caregiver perceptions of the spouse’s productive behaviors using a 5-point Likert scale for 27 items in three domains: task performance, problem solving, and socialization. The FBP has good internal consistency, with subscale Cronbach alpha coefficients ranging from 0.74 to 0.86 and an overall alpha of 0.86. (Baum & Edwards, 2000). Construct validity correlations of the FBP with the Katz Index of Independence in Activities of Daily Living, Blessed Dementia Scale, and the Memory and Behavior Problems Checklist ranged from 0.66 to 0.86 (Baum & Edwards, 2000). Ongoing primary stress can lead to development of secondary strains that reduce participation in other activities, evolving into role captivity and loss of self (Pearlin et al., 1990). The Activity Card Sort (ACS) first edition (Baum & Edwards, 2001) was used to measure secondary strain in terms of activity changes and restricted participation. Content and construct validity of the ACS was documented by Katz, Karpin, Lak, Furnman, and Hartman-Maier (2003). Baum and Edwards (2001) reported retest reliability of 0.897. The ACS has 80 photographs of common activities in four categories: instrumental, low-demand leisure, high-demand leisure, and social activities. Participants indicated whether they reduced or quit any of these 80 activities after their husband’s stroke. For each activity, the participant reduced or quit, they were asked if they wished

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Figure 2. Tree diagram of the caregiver experience of spouses of working-age husbands with stroke.

they could participate (or participate more) in that activity. Twenty-eight of the cards in the ACS are low-demand leisure activities and 17 cards are high-demand leisure activities. This study focused on Leisure Loss as an indicator of secondary strain. Leisure Loss was calculated with a denominator of the number of leisure activities that were reduced or quit since becoming a caregiver and a numerator of the number of those activities that the participant wished she could do or do more. Two assessments measured outcomes of the stress process: the 36-item Short Form Health Survey (SF-36, Ware, Kosinski, & Keller, 1994) and the Zarit Burden Interview (ZBI, Zarit & Zarit, 1987). The SF-36 measures physical and mental health with four physical health scales and four mental health scales. For the physical health scales, SF-36 reliability ranges from 0.89 to 0.94; mental health scale reliability of the SF-36 ranges from 0.89 to 0.91 (Ware et al., 1994). SF-36 scales are combined to provide a Physical Health Components Summary Scale and a Mental Health Components Summary Scale to indicate physical health-related quality of life and mental health-related quality of life. The ZBI is a 22item measure of social, personal, and psychological reactions to caregiving. Hébert, Bravo, and Préville (2000) found the ZBI to be highly reliable, with a Cronbach’s alpha coefficient of 0.92.

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Data Analysis SPSS version 20.0 for Windows® was used for data analysis. Participant characteristics and data distribution were identified with descriptive analysis. Nonparametric statistics were selected for further analysis due to small sample size, the nature of the scales, and data distribution. Mann-Whitney U calculation was done to test the hypothesis that participants with more primary stress from their husband’s behavior problems (scores from the FBP) reported more secondary strain (as indicated by reduced leisure participation). The two independent groups were formed based on the FBP cut-off point below 85. To test the second study hypothesis about difference of secondary stress with burden and health outcomes, distribution of scores on outcome variables were compared between women with Leisure Loss and women who had no Leisure Loss. A tree diagram (Figure 2) was constructed to display the pattern of participant experiences. The 20 participants were divided into two groups based on FBP score level as an indicator of primary stress. The next level of branching was determined by the secondary strain of Leisure Loss or No Leisure Loss. A final branching revealed the burden levels as an outcome of the caregiving stress process.

Findings Sample Study information was mailed to 79 caregivers who met the inclusion criteria. Follow-up calls were attempted within a week. Three letters were returned without forwarding addresses. Thirty-two people declined, 17 could never be reached, and 7 people were dropped from the study after they repeatedly requested rescheduling. A total of 20 caregivers were involved in this study. Regarding race/ethnicity, 13 participants were Caucasian, 6 were African American, and 1 was Asian. Ages ranged from 22 to 65 (mean age = 52.94, SD = 13.24 years). Their husbands had a mean age of 54.32 (SD = 13.59 years). Thirteen participants were employed outside of their homes before their husband’s strokes. Ten worked full time, and three worked part time. Three others were employed at home. Only one woman decreased her employment outside of the home from full time to part time; all others continued their prior employment levels. Five women continued volunteering at their prior levels, whereas one woman cut back and another quit volunteering.

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Stress and Leisure Loss Primary stress, secondary strain, and outcome data are shown on Table 1. Scores on the Lawton IADL Scale ranged from 5 to 16. Fifteen participants had scores of 14 or higher on the 16-point scale of that assessment. Half of the participants reported that their spouses had no problems with any of the IADL tasks. Five participants indicated their husbands needed some help on only one or two activities, and only five caregivers reported that their husbands needed more than that amount of assistance. Details from the FBP revealed more problems that required caregiver attention and help. The majority of caregivers perceived at least some difficulties in their spouses’ productive behaviors. Thirty-five percent of participants scored their husbands’ behavior below 85, indicating greater need for supervision or assistance (Baum & Edwards, 2000). Baum and Edwards (2000) found that people with stroke who had FBP scores of 84 or lower had five-fold greater likelihood of needing supervision or assistance compared with those with FBP scores of 85 or higher. On the ACS, 10 participants reported that they decreased or quit their participation in some of their prior leisure activities. All of those women wished they could do or do more of some of those leisure activities that they had decreased or quit. This reaction was labeled Leisure Loss and was calculated as the number of leisure activities the spouse wished she could do or do more divided by the total number of leisure activities that were decreased or quit. Leisure Loss scores could range from 0 (did not wish I could do any of the leisure activities that were decreased or quit) to 1.00 (wish I could do or do more of every leisure activity that I decreased or quit). For caregiver stress outcomes, the majority of participants (65%) reported no to low burden on the ZBI. Two women (10%) had low to moderate burden, and five (25%) had moderate to severe burden. No one in this study experienced severe burden. Differences Between Groups Based on Primary Stress Since most scores on the Lawton IADL Scale were very high, the FBP scores were selected as an indicator of difference in primary stress levels of caregivers. Participants were divided into two groups according to their FBP scores. The low primary stress group included participants who reported FBP scores of 85 or higher for their husbands. The high primary stress group reported more difficulties for their husbands’ management of task performance, problem solving, and social interaction, yielding lower FBP scores. Independent-sample Mann-Whitney U test

Table 1 Primary Stress and Secondary Strain Range Variable

Low

High

Mean

Primary stressors Lawton IADL Scale

5

16

13.75

Functional Behavior Profile

60

108

91.20

Secondary strains Leisure Loss, overall

0

1

0.34

Low-demand leisure

0

1

0.32

High-demand leisure

0

1

0.30

Table 2 Comparison of Leisure Loss Based on Primary Stress Level FBP < 85

FBP > 85

High Primary Stress (n = 7)

Low Primary Stress (n = 13)

MannWhitney U

Variable

Median (IQ Range)

Median (IQ Range)

p Value

Low-demand leisure

0.67 (0.33 to 0.79)

0 (0 to 0)

0.016*

High-demand leisure

1.00 (0 to 1.00)

0 (0 to 0)

0.011**

Note. FBP = Functional Behavior Profile; IQ = interquartile. * p ≤ 0.05; ** p ≤ 0.01.

was done to determine whether there were differences between groups on the secondary strain of Leisure Loss (Table 2). Participants in the high primary stress group showed significantly more Leisure Loss for both high- and low-demand leisure. Fewer participants in the low primary stress group reported any Leisure Loss. Differences Between Groups Based on Leisure Loss Leisure Loss was reported by half of the participants, whereas the other half reported that they continued their leisure activities at a similar level as before their husbands’ stroke. Independent-sample Mann-Whitney U tests were done to determine whether there were statistically significant differences between the two groups (Leisure Loss/No Leisure Loss) for primary stress (FBP and Lawton IADL

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Table 3 Median (Interquartile Range) of Stressors and Outcomes Based on Leisure Loss Variable Functional Behavior Profile score Zarit Burden Interview score

No Leisure Loss

Leisure Loss

Mann-Whitney U

Median (IQ Range)

Median (IQ Range)

p Value

105 (95.0 to 108.0)

80.0 (68.5 to 93.8)

0.005**

6.0 (4.0 to 11.25)

25.5 (18.5 to 48.0)

0.000**

SF-36 physical health summary

51.8 (50.6 to 53.1)

55.5 (43.5 to 57.9)

0.579

SF-36 mental health summary

55.9 (49.9 to 57.8)

43.7 (29.0 to 56.2)

0.247

Note. IQ = interquartile; SF-36 = 36-item Short Form Health Survey. ** p < 0.01.

scores) or outcomes of burden (ZBI) and healthrelated quality of life (SF-36 summary scores). Table 3 shows those findings. Participants with Leisure Loss experienced significantly more primary stress as indicated by lower FBP scores (p < 0.05). Their stress process outcomes measured by the ZBI were higher at a statistically significant level (p < 0.05). The SF-36 summary scores for physical health components and mental health components were not significantly different between the two groups. The tree diagram (Figure 2) shows that seven of the caregivers in this study had high levels of primary stress based on FBP scores. Six of those seven wives had Leisure Loss; half of them had low to moderate burden, and the other half had moderate to severe burden. One participant showed a high level of primary stress based on her husband’s low FBP score, but she had no leisure loss and reported burden in the low to moderate range. Of the women with low primary stress (FBP of 85 or higher), all of them had no/low burden, and only 4 of these 13 women reported any Leisure Loss.

Discussion This study used the Stress Process Model to examine the experience of 20 wives who were caregivers for working-age husbands with mild to moderate stroke. An “occupational lens” guided the selection of assessments. Leisure Loss was defined as cutting back or quitting leisure activities that the person wishes she could do or do more. Two hypotheses were tested. The first hypothesis, that primary stress from caregiving would be associated with Leisure Loss, was supported by this study. Participants who perceived more functional behavior problems in their husbands (FBP < 85) experienced significantly more Leisure Loss compared with participants whose

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husbands had more functional behavior skills (FBP > 85). This finding suggests that occupational therapists who want to provide meaningful family-centered services should inquire about changes in leisure activities in caregivers for people with stroke. Caregivers may focus so much on behavior difficulties in their spouse that they sacrifice their own valued activities, particularly for leisure participation. While such a strategy may seem tolerable and even necessary during the crisis phase, it may have an erosive effect over time. Occupational therapists can guide family caregivers to navigate the shift from crisis mode to everyday mode following stroke in several ways. First, occupational therapists can educate families on assessments that reveal the strengths and difficulties of the relative with a stroke. From the assessments, an OT can explain how those symptoms are likely to contribute to performance in everyday living. Several empirical studies have revealed caregivers’ lack of preparation or training (Coombs, 2007; Perry & Middleton, 2011; Tooth et al., 2005). Occupational therapists have knowledge and skills to address this gap by educating family members about assisting their relatives whose behaviors and emotions may be confusing after a stroke. Such education can be done individually or through peer groups that facilitate sharing with other caregivers who can give and receive ideas about strategies and resources to support relatives with stroke. The second hypothesis, that Leisure Loss is related to the outcomes of burden and quality of life, was partially supported by this study. Caregivers with Leisure Loss reported significantly higher levels of burden on the ZBI compared with those who continued their leisure participation. However, neither physical nor mental health-related quality of life, as measured by the SF-36, showed statistically significant differences based on whether or not participants reported Leisure Loss.

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Jobs or careers can be core to identity and essential for economic stability. In the productive activity arenas of employment or volunteering, very few participants reported any changes. One woman quit her full-time job, and another reduced her employment and also quit her volunteer work in the community. Both of those women reported Leisure Loss. A third woman cut back on volunteering but reported no change in leisure participation. Participants were much more likely to reduce or quit leisure activities than to decrease or terminate their involvement in work or volunteering. Leisure may be an important early barometer of one’s spirit and sense of selfhood. In her Muriel Driver Memorial lecture, Majnemer (2010) emphasized the importance of balancing one’s life for an ocean of possibilities and fulfillment. She proposed that leisure is an “essential sphere of life experience…[which] should be an integral part of occupational therapy practice” (Majnemer, 2010, p. 199). While SF-36 mental health scores were lower among the caregiver group with Leisure Loss, it was surprising that the difference with other caregivers was not statistically significant. One possible explanation is the comparatively limited duration of caregiving since the spouse’s stroke. Among this working-age population, it may take longer for mental health to decline. Furthermore, the SF-36 might not be sensitive enough to capture these mental health changes and differences between groups. A larger study sample may reveal between-group differences. Shreiner, Morimoto, Arai, and Zarit (2006) found that caregivers with ZBI scores of 24 to 26+ had significantly higher risk of depression. In this study, all but one person in the Leisure Loss group had such elevated ZBI scores and may have shown depression if other assessments had been used. The relationship of Leisure Loss to decreased mental health merits further attention from occupational scientists and therapists. The design of this investigation linked theories and a practice model with methods for data collection. Research on family caregiving has been criticized as data collection that lacks conceptual foundations to guide the design, information gathering, and interpretation of findings (Gaugler, 2010). This study was driven by concepts of the Stress Process Model (Pearlin et al., 1990) for selection of occupation-focused, clientcentered assessments guided by constructs of the Person-Environment-Occupation-Performance model (Baum & Christiansen, 2005). Such an approach was designed to illuminate the occupational dimensions of family caregiving and their relationship to burden and health-related quality of life.

According to the Stress Process Model, primary stress is based on the type and amount of new caregiving responsibilities. It can extend beyond the obvious need to assist in self-care. Family members report minimal preparation for their new caregiving role beyond medication management or basic ADLs (Bookman & Harrington, 2007). Discharge planning that focuses only or primarily on ADLs, mobility, and basic motor function neglects to address the important role of cognition. Executive dysfunction, which is common even in mild stroke (Wolf, Barbee, & White, 2011), can create confusing challenges for caregivers; they may feel compelled to provide assistance and extensive vigilance to compensate for their spouse’s performance problems. Alternatively, they may be confused or irritated by a seeming lack of cooperation in their spouse with stroke. Two assessments were used to capture primary stress levels: the Lawton IADL Scale and the FBP. Performance of the Lawton IADL activities were not noticeably changed in most of these men with mild to moderate stroke. Further measurement of skill levels and primary stress for caregivers was done with the FBP (Baum & Edwards, 2000), revealing difficulties that can interfere with independence and safety for the person with stroke. Such behavior problems can require ongoing vigilance, time, and efforts. Rather than observe actual performance, the FBP measures caregiver perceptions. Such perceptions guide the caregiver’s decisions about how to help. Those perceptions are more important than actual performance that could be measured by a clinician. Thirty-five percent of the participants scored their husbands below 85 on the FBP, a level indicative of five-fold increased risk for institutionalization and greater need for assistance in a variety of ways (Baum & Edwards, 2000). Other participants reported that their husbands had a variety of subtle problems in functional behaviors that required monitoring and/or assistance. Between-group comparison showed that participants with high primary stress, as indicated by low FBP scores, had significantly more Leisure Loss; their prior lifestyles were disrupted. Decreased participation in valued leisure activities could result from lack of instruction on how to manage cognitive, behavioral, and emotional changes in one’s relative. The need for new skills and more education is a common concern among family members of someone with a stroke (Greenwood et al., 2009). Little information or training is provided for family caregivers, particularly related to cognitive problems from stroke and how to manage their effects on everyday life. Even less guidance is provided for care-

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givers to emphasize the importance of taking care of themselves (Loucks-Atkinson et al., 2006). Primary stress can lead to secondary strain, particularly when a family caregiver does not understand behavior changes and does not have skills to manage them. Secondary strain can begin with decreased time for oneself and reduced social life. As primary stress continues or increases without relief, those initial effects can accumulate and expand into role engulfment and subsequent loss of self (Pearlin et al., 1990). From an occupational performance perspective, secondary strain could be manifested by decreased participation in valued activities. This study focused on leisure participation and found that half of the participants cut back or quit some of their leisure activities. All of those women wished they could do or do more of at least some if not all of those leisure activities. Leisure adds vitality to life; it provides opportunities for social interaction, creative expression, escape, and fun (Berger, 2011; Gahagan et al., 2007; Pressman et al., 2009). Confronted by the crisis of a stroke, leisure may be seen as a lower priority and possibly as frivolous or selfish. This pilot study showed that caregivers with Leisure Loss experienced more burden compared with caregivers who continued their valued leisure activities. Leisure needs to be “acknowledged as an essential component of health and occupational performance rather than marginalized as a luxury” (McColl & Law, 2013, p. 117). In their extensive scoping review, McColl and Law (2013) identified occupational therapy interventions that address self-care, productivity, or leisure. Only seven of the 59 programs they found had a focus on leisure, and this shortage likely reflects the lower prioritization of leisure for occupational therapy practice. Although leisure is given less attention than other aspects of occupation (McColl & Law, 2013), this pilot study showed that leisure may play a pivotal role for caregivers. Comparing participants with Leisure Loss to those who continued their valued leisure activities, the Leisure Loss group reported significantly more burden. While other studies report poorer health outcomes among caregivers reporting activity restriction (Losada et al., 2010; Loucks-Atkinson et al., 2006), this study found no significant differences for health-related quality of life based on whether there was Leisure Loss. One explanation may be related to the age of these participants. The current study involved a group of participants who were younger than 65, whereas the studies by Losada et al. (2010) and Loucks-Atkinson et al. (2006) included older participants. Another possible explanation

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may be the rather short duration of the Leisure Loss. This study included people whose husbands had a stroke within the past 2 years, while other studies did not designate the duration of caregiving. Leisure may have less impact on health-related quality of life in the shorter term, but long-term follow up may reveal changes in physical health. Occupational therapists can address leisure as a vital contributor to health and quality of life in assessment and intervention for families of people with stroke. Rather than recognize leisure as a valuable contribution to health, some caregivers may consider it an idle indulgence or an irresponsible use of precious, limited energy. They may be reluctant to squander their limited time on activities that are not obviously useful or productive. The demands of caregiving can be pressing and may eclipse opportunities to take time for oneself. Previous research on activity restriction in family caregivers found that reasons included lack of time or energy, fear about leaving the relative alone, or reluctance to do things by oneself (Bookman & Harrington, 2007; Cao et al., 2010; Rudman et al., 2006). This study did not ask caregivers about reasons for decreasing their leisure participation. Qualitative research is needed to determine why or how people reorganize their “occupational lives” when they acquire new responsibilities as family caregivers.

Limitations This was a small exploratory study with valuable implications but several limitations. A larger number of participants could allow more robust data analysis and provide more generalizable findings. The cross-sectional design does not show whether or how Leisure Loss changes over time. These participants had been caregivers for a comparatively short period; their husbands’ strokes were 6 to 24 months ago. This timeline could not identify effects of prolonged caregiving on leisure, participation, and quality of life.

Conclusion Leisure participation is essential for health and identity. The Stress Process Model (Pearlin et al., 1990) can be combined with client-centered occupational assessments to understand the experience of family caregiving. A number of caregivers in this study cut back or quit some of the leisure activities they had enjoyed before their spouse’s stroke. Wives who experienced such leisure loss had significantly more burden. They were also likely to report more

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functional behavior difficulties in their husbands, which may influence their restriction of leisure participation. Occupational therapists can promote caregiver health by discussing leisure and identifying barriers to continued participation. Such efforts could contribute not only to caregiver well-being, but also sustained performance and the health of the entire family. Further research for development of evidence-based interventions is needed.

Acknowledgments The author thanks Shalini Paka, MSOT, for help with the literature review while she was a graduate student in Dr. Kniepmann’s Family Caregiving Lab and Dr. Claudia List Hilton for input on an initial draft of this article. The author also appreciates the participants who shared time and information for this study.

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Family caregiving for husbands with stroke: an occupational perspective on leisure in the stress process.

This study adapted the Stress Process Model with occupational assessments to identify stress, leisure changes, burden levels, and health-related quali...
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