Spouse stressors while awaiting heart transplantation

Spouse stressors while awaiting heart transplantation

] 5EASE Spouse stressors while awaiting heart transplantation E i l e e n G. C o l l i n s , E h D , RN, C o n n i e W h i t e - W i l l i a m s , M...

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5EASE

Spouse stressors while awaiting heart transplantation E i l e e n G. C o l l i n s , E h D , RN, C o n n i e W h i t e - W i l l i a m s , M S N , RN, a n d A n n e J a l o w i e c , P h D , RN, F A A N , H i n e s a n d M a y w o o d , Ill., a n d Birmingham, Ala.

OBJECTIVES: The objectives of this study were to identify c o m m o n stressors experienced by spouses of heart transplantation (HT) candidates; to identify differences in stressors among spouses of HT candidates based on selected demographic variables; and to report preliminary psychometric data on the newly developed Spouse Transplant Stressor Scale. DESIGN: Comparative, cross-sectional survey. SAMPLE: Spouses of 85 HT candidates awaiting HT at midwestern and southeastern medical centers and a midwestern Department of Veterans Affairs hospital. MEASURES: Spouse Transplant Stressor Scale (Collins), an investigator-developed rating form and demographic data sheet. RESULTS: Spouses of HT candidates reported high levels of stress during the wait for a donor heart. Factors related directly to the transplantation experience were rated as the most stressful. Fear that the patient (partner) would die before a h e a r t became available was the worst stressor for the spouses. Working spouses perceived more stressors related to responsibility, socioeconomics, and self. Stressors associated with the transplantation process itself were equally stressful for spouses who work and spouses who d o not work. (HEARTLUNG| 1996;25:4-i3)

n the past decade, heart transplantation (HT) has become a viable treatment option for patients with end-stage congestive heart failure. The number of patients waiting for and receiving hearts has grown exponentially. Before 1980, fewer than 360 HTs were performed, ~ but just 13 years later (December

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From the Edward Hines Jr. Hospital, the University of Alabama Medical Center in Birmingham, and Loyola University of Chicago Medical Center in Maywood. Supported by a grant from the Alpha Beta Chapter of Sigma Theta Tau. This work was completed as part of Dr. Collins' dissertation Work at Loyola University. Reprint requests: Eileen G. Collins, PhD, RN, Nursing Research (118K), Edward Hines Jr. Hospital, Department of Veterans Affairs, PQB 5000, Hines, IL 60141. 211166653

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1993) 26,704 HTs had been performed worldwide. 2 A total of 2933 patients were actively awaiting HT as of D e c e m b e r 1994. 3 Though many have recognized that the wait f o r HT is stressful for patients, 4-~2only a few investigators have studied the effects on the families, j3,'~ The purpose of this article is twofold: first, to report on stressors and overall level of stress experienced by spouses of patients awaiting HT; and second, to report initial psychometric data on an instrument d e v e l o p e d by the first author for this study, the Spouse Transplant Stressor Scale (STSS). l~

LITERATURE REVIEW Only a few studies have examined the impact of the wait for HT on families: Nolan e t a ] . ~5

JANUARY/FEBRUARY 1996 HEART & LUNG

studied stress and coping in 38 family members of HT candidates who waited an average of 6.5 months for HT. They reported that 53% of these family members had moderate levels of stress and 47% experienced low stress during the wait for HT. In general, family members appraised the pretransplantation period as positive; however, as the perception of the transplantation experience became more negative, family stress increased. Last, HT family members used more coping strategies than normative subjects as reported with the Family Crisis Oriented Personal Scale. A major weakness of this study was that stressors were measured with the Family Inventory of Life Events, which does not measure stressors directly related to HT. Buse and Pieper ~3surveyed 30 spouses of HT recipients, 26 women and 4 men. They examined the overall level of stress and stressors that related to the transplantation experience. For patients, the time period after transplantation ranged from 67 days to 3 years. Spouses reported high levels of stress for this time period as measured with the Subjective Stress Scale. Spouses perceived the period after HT to be more positive than the period before HT (p r The most stressful experiences before HT were (1) fear over the loss of the spouse, (2) learning more about HT, (3) having time available for themselves, (4) life in general, and (5) the ability to make future plans. The most stressful experiences after HT were (1) learning about HT, (2) the availability of support, (3) relationships with family and friends, (4) independent decision making, and (5) the relationship with children and/or grandchildren. The weakness of this study was that all data for the period before HT were collected retrospectively. In some cases during the survey, subjects were asked to recall feelings that occurred 3 years previously. Mishel and Murdaugh '4 interviewed 20 family members of HT patients who were at different stages of the HT process. This study used grounded theory to examine family members of HT patients before HT (N=7), immediately after HT (N=8), and for a long time after HT (N=5). No specific time frames were cited regarding the patient's time on the waiting list or time after surgery. Mishel and Murdaugh reported that families of HT candidates became so totally immersed in the transplantation process that their entire life focused on their loved one's wait for a donor heart. The patient's family member viewed the

HEART & LUNG VOL. 25, NO. 1

hospitalization stage as a time of passage and the period after transplantation as a time of recovery and negotiation. All subjects in this study participated in a support group, and there may be inherent differences in those who choose to participate in support groups versus those who do not. In addition, the delineation of phases for each subgroup is based on a small number of participants within that group. In summary, the wait for a donor heart can be a very stressful time for spouses because family members are physically and emotionally affected by their loved one's illness. As the wait for a donor heart increases, more patients will be taken care of at home and in hospitals for longer p e r i o d s of time. As a result, s p o u s e s of t h e s e p a t i e n t s m a y b e u n d e r increasing levels of stress. To m a i n t a i n s u p p o r t for the HT c a n d i d a t e a n d avoid further physical a n d e m o t i o n a l comp r o m i s e for t h e s p o u s e , it is e s s e n t i a l to recognize what a r e a s of the s p o u s e ' s life are affected b y the HT e x p e r i e n c e so that a p p r o p r i a t e interv e n t i o n s can b e p l a n n e d . CONCEPTUAL

FRAMEWORK

The Lazarus and Folkman ~7Stress and Coping Model was used as the conceptual framework for this study. The model has four major components: stress, appraisal, coping, and adaptational outcome. For the purpose of this article, only the stress and appraisal portions of the model are addressed. Stress is defined as a stimulus or stressor. Lazarus and Folkman describe three types of stressors: major changes affecting a large number of people, major changes affecting one or a few persons, and daily hassles. The authors state that a life-threatening or incapacitating illness may be considered a stressor that affects one or more persons. Such a definition of stress, however, does not allow for individual differences in the evaluation of the particular event. Lazarus and Folkman ~7 further define psychological stress as a "relationship between the person and the environment that is appraised by the person as taxing or exceeding his or her resources and endangering his or her well-being." Thus to understand the differences between individuals, one must take into account the cognitive processes that mediate the event and the reaction to the event. Lazarus and Folkman call this process

cognitive appraisal. Personal factors that influence appraisal are commitments and beliefs. Commitments define what has meaning or importance to the individ-

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ual. Beliefs are preexisting notions about reality that the individual brings to an encounter. Situational factors that influence appraisal are novelty, predictability, event uncertainty, temporal factors, and ambiguity. One easily can see that waiting for a husband or wife to undergo a transplantation procedure can be appraised as having great meaning to the person and being a great threat to the individual's well-being. To most, the situation is new, unpredictable, and uncertain, and it is hard to exert any control over increasing stress. There is no set time before which HT will occur; it may be days before a donor heart becomes available or it may be years. For this study, preexisting stressors were identified as whether or not the spouse was employed, the patient's health status as indicated by his/her intensive care unit (ICU) status, and the time waiting for HT. The spouse's health status also was identified as a preexisting stressor but is not addressed in this article. Cognitive appraisal was measured by the STSS, a onetime rating on overall level of stress, and a oneitem rating on the impact that the HT process had on the spouse's life. METHODS

Study design. A cross-sectional,

comparative d e s i g n with s u r v e y r e s e a r c h m e t h o d s was used. Sample. This n o n r a n d o m s a m p l e c o n s i s t e d of 85 s p o u s e s of p a t i e n t s awaiting I-IT at t h r e e sites: Loyola U n i v e r s i t y of Chicago Medical C e n t e r (LUMC), Hines V e t e r a n s Affairs Hospital (HVAH), a n d t h e U n i v e r s i t y of A l a b a m a (Birmingham) Medical C e n t e r (UABMC). LUMC a n d HVAH are a d j a c e n t m e d i c a l c e n t e r s and h a d a c o m b i n e d HT program. UABMC was chosen b e c a u s e LUMC a n d UABMC were collaborating a l r e a d y on an ongoing National Institutes of H e a l t h grant. '8 I n s t i t u t i o n a l r e v i e w b o a r d a p p r o v a l was o b t a i n e d from all t h r e e sites. F o r t y - o n e s u b j e c t s (48.2%) w e r e s p o u s e s of p a t i e n t s waiting for HT at LUMC, 13 at HVAH (15.3%), and 31 at UABMC (36.5%). All s p o u s e s of HT c a n d i d a t e s were s a m p l e d r e g a r d l e s s of how long the p a t i e n t had b e e n on the HT waiting list (i.e., t h e y did not h a v e to b e new on the list). The r e s p o n s e rate for this s t u d y was 80% of the s p o u s e p o o l of subjects. The m e a n a g e of t h e s u b j e c t s was 51.5 y e a r s (range = 27 to 64 years). The m e a n age of the HT c a n d i d a t e s was 53.9 y e a r s (range = 24 to 67 years). The s p o u s e s a m p l e was primarily f e m a l e (90.5%), white (94.1%), m a r r i e d for a long t i m e

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( m e a n -- 26.2 years), a n d typically had t h r e e children. S e v e n t y - f i v e p e r c e n t of the s u b j e c t s were in their first marriage (N=64), and 67% of the s a m p l e (N=57) h a d no d e p e n d e n t children at the t i m e of the study. The s u b j e c t s were well e d u c a t e d , with 51% c o m p l e t i n g 1 or m o r e y e a r s of college ( m e a n level of e d u c a t i o n --- 13.2 years). The family income r a n g e d from less than $10,000 p e r y e a r to $150,000 or m o r e p e r year; t h e m e d i a n i n c o m e was $40,000 p e r year. At the t i m e of this study, 12 (14.1%) of the s u b j e c t s ' s p o u s e s w e r e awaiting HT in an ICU, o n e (1.2%) on a g e n e r a l floor, a n d 72 (82.7%) at h o m e . Patients w e r e waiting for a d o n o r heart an a v e r a g e of 222 d a y s (range = 1 d a y to 3.7 years). A m e d i a n m a y b e m o r e reflective of the a v e r a g e waiting t i m e b e c a u s e the range was so wide; the m e d i a n wait t i m e was 98 days. Instruments. Five instruments were used in the overall study: the STSS, ~6 the Family Inventory of Resources for Management, '9 the Jalowiec Coping Scale, 2~ Ferrans and Powers' Quality of Life Index, 2~ and a 6-item rating form. The & i t e m rating form consists of 6 items that the subject rates on a Likert-type scale: overall stress, overall coping, spouse's health, patient's health, quality of life, and the impact of the HT experience. The STSS was developed for this study by the first author. Items were generated from multiple sources: a pilot study conducted before the initiation of the present study, the author's clinical experience, a review of the literature, and five existing stressor scales--the Family Perception of the Transplant Experience Scale, ~5 the Family Inventory of Life Events and C h a n g e s , 22 t h e H e a r t T r a n s p l a n t S t r e s s o r Scale; 23 the P e r c e p t i o n of H e a r t T r a n s p l a n t a t i o n Q u e s t i o n n a i r e , ~3 a n d t h e S p o u s e S t r e s s o r Scale. 24 The pilot s t u d y u s e d qualitative m e t h o d s to identify s t r e s s o r that s p o u s e s experie n c e d while their p a r t n e r s were awaiting HT and how waiting for HT h a d an i m p a c t on their lives. Five s p o u s e s w e r e interviewed, a n d all r e p o r t e d b e i n g frightened that their p a r t n e r might not survive until HT. In addition, two r e p o r t e d h a v i n g difficulty a s s u m i n g a d d e d r e s p o n s i b i l i t i e s such as d a y - t o - d a y chores a n d financial b u r d e n s . All r e p o r t e d s o m e difficulty s l e e p i n g since the t i m e their s p o u s e was listed for HT. Last, all r e p o r t e d that t h e r e was not e n o u g h t i m e for t h e m s e l v e s o n c e their p a r t n e r was listed for HT. The five a f o r e m e n t i o n e d s t r e s s o r scales were r e v i e w e d for salient i t e m s

JANUARY/FEBRUARY 1996 HEART & LUNG

that may have been missed in the other methods that generate items. Some items from these scales were modified and used in the STSS. The STSS has 61 items rated on a Likert-type scale from 0 to 3 (0 = not stressful, 3 --- very stressful). The 0- to -3 format was chosen because respondents could easily identify markers of no stress, a little stress, a moderate amount of stress, or a lot of stress, rather than try to quantify stress on a more finely divided scale, which would be harder for subjects to assess. Items include both stressors directly related to the transplantation experience (45 items, 74%) and general major stressors experienced by families but not necessarily related to the transplantation (16 items, 26%). Content validity of the STSS was verified by two HT coordinators and an HT psychologist. They were asked to review the tool for comprehensiveness, meaningfulness, and clarity of wording. All three agreed that the final instrument clearly and sufficiently addressed the stressor experienced by the spouses of HT candidates. In addition, the instrument was given to two spouses of HT candidates for content validity assessment. The spouses were asked to look for unclear wording and to check if all the stressors that they, or spouses of other HT candidates, had experienced were addressed in the instrument. The spouses reported that the wording was clear and that all of the stressors they, and others like them, had experienced were represented on the tool. Subscales for the STSS were determined via a thematic clustering of items. Two HT coordinators, an HT psychologist, and an HT quality-oflife researcher reviewed the items for appropriate classification into the subscales compiled by the investigator. Several items were reclassified into other subscales based on this feedback. (The sample size was not large enough to perform an exploratory factor analysis to empirically test for subscale classification.) The four STSS subscales delineated were transplantation stressors (20 items), socioeconomic stressors (9 items), responsibility stressors (9 items), and stressors related to self (23 items) (Appendix). Homogeneity reliabilities for the STSS were (N--85) total scale, 0.96; transplantation stressors, 0.90; socioeconomic stressors, 0.86; responsibility stressors, 0.79; and stressors related to self, 0.92. These coefficient alphas support internal consistency of the total scale and each subscale.

HEART & LUNG VOL. 25, NO. I

Concurrent validity of the tool was supported by a significant correlation between the STSS total score and a one-item rating of the subject's overall level of stress (r = 0.62, p = 0.000, N = 85). Concurrent validity was supported further with significant correlations between higher stressor scores and (1) a poorer quality of life score (r = -0.46, p -- 0.000), as measured with the Ferrans and Powers' Quality of Life Index, and (2) less family resources available for coping (r = -0.41, p = 0.000), as measured with the McCubbin et al. Family Inventory of Resources for Management. Data analysis. Measures of central tendency were used to describe the sample characteristics and scores on various tools. Tests were used to examine differences in scores based on dichotomous grouping variables. RESULTS

Overall stress rating.

scale of 1 to 10, subjects rated their mean overall level of stress while their spouse was waiting for HT as 7.32 (SD=2.56, obtained range = 1 to 10). Thirteen percent rated their overall level of stress as low, 22% as moderate, and 65% as high. This indicates that almost two thirds of the spouses experienced a great deal of stress during the HT waiting period. S T S S . Because of the unequal number of items per subscale, mean scores were used for analysis, thus making the possible range of scores for the STSS and its subscales 0 to 3.00. A mean score was computed by summing the item ratings and dividing by the number of items in the subscale. Mean scores for the stressor subscales were transplantation stressors, 1.18 (SD=0.55, obtained range=0.55 to 2.35); socioeconomic stressors, 0.91 (SD=0.69, obtained range=0.00 to 2.44); stressors related to self, 0.86 (SD=0.57, obtained range=0.00 to 2.83); and responsibility stressors, 0.61 (SD=0.50, obtained range=0.00 to 1.89). Thus the transplantation stressors were the most stressful, followed by socioeconomic stressors, stressors related to self, and responsibility stressors. The five most stressful factors for the spouse during the HT waiting period were (1) fear that the patient might die, (2) not knowing when the transplantation would take place, (3) not knowing if the transplantation would take place, (4) not knowing if a donor heart would become available, and (5) the wait for the transplantation. All of these five top-ranked items related directly to the transplantation experience and On

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Table I Most stressful factors for spouses before HT Stressor

Mean*

Afraid spouse might die Not knowing when transplantation will take place Not knowing if transplantation will take place Not knowing if donor heart will become available Waiting for transplantation Worrying that new heart might not work Not being able to plan for future Worrying whether insurance will cover cost Worrying about paying medical bills Limited finances because of spouse's illness

2.34 2.28

0.96 0.92

2.19

1.02

2.02

Table II

Ten least stressful factors for spouses before transplantation

SD

0.91

2.02

0.91

1.84

1.10

1.65

1.08

1.6i

1.27

1.54

i. 19

1.48

1.13

Stressor

Patient's alcohol and/or drug abuse My alcohol and/or drug abuse Losing job Having to get job because of spouse's illness Worrying about effect of surgery on spouse Arranging care for sick or elderly relative Caring for sick/elderly relative Having to help spouse take medication Having to go on public assistance Feeling guilty about spouse getting someone else's heart

Mean*

SD

0.07

0.34

0.09

0.39

0.24 0.25

0.68 0.75

0.26

0.58

0.29

0.72

0.35

0.72

0.36

0.69

0.38

0.9 i

0.40

0.62

*Range of scores 0 to 3.

*Range of scores 0 to 3.

its uncertainty. Table I lists the 10 highest ranked stressors and their mean scores. The five least stressful factors for the spouse during the HT wait were (1) the patient's alcohol and/or drug abuse, (2) subject's alcohol and/or drug abuse, (3) the loss of a job, (4) the need to get a job because of the patient's illness, and (5) concern for the effect of surgery on the patient's physical appearance. The first four least stressful items were rated as not applicable stressors by most subjects, whereas worrying about the effect of transplantation on the patient's physical appearance was rated as not stressful by most subjects. Table II lists the 10 least stressful factors. Work status. The spouse sample was d i v i d e d into workers (N=65) and nonworkers (N=20) based on whether the person worked outside the home. Significant differences were found on the total stressor score (range=0 to 3; workers' mean=0.99, SD--0.49; nonworkers' mean=0.70, SD=0.37; t183]=2.39, p=0.019) and also on three of the stressor subscales: socioeconomic stressors, r e s p o n s i b i l i t y stressors, and stressors 8

related to self. Subscale means and significance levels are provided in Table III. Thus those spouses who worked outside the home reported significantly more total stressors, socioeconomic stressors, responsibility stressors, and stressors related to self, but not transplantation-related stressors. I C U . The spouse sample was d i v i d e d into those whose patient-partner was waiting for HT in an ICU and those not waiting in an ICU. Spouses with partners waiting in an ICU reported significantly more socioeconomic stressors (ICU mean=l.42, SD=0.87; non-ICU mean=0.83, SD=0.62; t1831=2.86, p=0.005). There was no significant difference in income for the ICU group versus the non-lCU group to account for this finding; however, the costs related to maintaining a family member in an ICU are higher. No significant differences based on ICU status were found among transplantation stressors, self stressors, responsibility stressors, or overall level of stress. Time waiting for H T . Because there was a wide range of waiting time for this sample (1 to 1348 days), it was important to examine the impact of the transplantation wait on the overall level of stress and on the types of stressors JANUARY/FEBRUARY 1996 H E A R T & L U N G

Table III Stressor differences b a s e d on spouse's w o r k status Stressor* subscale S o c i o e c o n o m i c stressors Workers Nonworkers Stressors r e l a t e d to self Workers Nonworkers Responsibility stressors Workers Nonworkers

Mean

SD

t

df

p

1.05 0.45

0.68 0.47

3.64

83

0.000

0.95 0.59

0.58 0.45

2.50

83

0.014

0.68 0.39

0.51 0.43

2.33

83

0.022

*Range=0-3. Transplantation-related stressors did not differ significantly between workers and nonworkers.

experienced by the spouses. Therefore the sample was divided into two groups based on the median wait time (98 days). No significant differences based on transplantation wait time were found among any of the stressor variables. The group was then divided into groups of spouses whose partners waited fewer than 6 months for HT (N=54) and those whose partners waited 6 months or more for HT (N=31). Spouses waiting for transplantation 6 months or more reported significantly more stressors related to self than those waiting less than 6 months (wait _>6 months mean=1.01, SD=0.63; wait < 6 months mean=0.76, SD=0.50; t[831=-0.211, p=0.04). No other significant differences in stressors were noted at the 6-month wait time. Thus it appears that those waiting 6 months or more for HT experienced more self-related stressors than those waiting less than 6 months. DISCUSSION

Most spouses (65%) rated their overall level of stress as high while their partners waited for a donor heart. This finding is contrary to the Nolans et al. 1~report of moderate to low levels of stress in family members of HT candidates. However, a high level of stress in family members of ill patients in general is well supported in the literature. For example, Artinian 25 found that spouses of patients undergoing coronary artery bypass grafting had moderate amounts of psychologic stress at the time of the surgery but HEART & LUNG VOL. 25, NO, 1

less stress 6 weeks after surgery (measured with Lefebvre and Sadford's Strain Questionnaire). Bohachick and Anton 2~ found that spouses of patients with severe cardiomyopathy reported higher levels of stress, as measured with the Psychosocial Adjustment to lllness Scale, than did their partners (N=90 couples). Spouses of patients with cardiomyopathy also reported experiencing "quite a bit" to "extreme" worry (82%), anxiety (61%), and depression (39%). Gilliss 27 noted that spouses of patients undergoing coronary artery bypass grafting reported significantly more stress than did their partners, and Mayou et al. 28 found that 38% of their sample (82 wives of patients with myocardial infarction [MI]) were moderately to severely distressed. Crying and disturbances of sleep and appetite were the most common symptoms in the wives of patients with MI. Sexton and Munro 29 reported that wives of patients with chronic obstructive pulmonary disease reported significantly higher stress scores, as measured with Chapman's Subjective Stress Scale, than did wives of persons without a chronic illness. Stern and Pascale 3~found that 26% of their sample (52 spouses of patients with MI) were anxious or depressed at the time of their partner's MI. Wives reported symptoms related to stress such as headaches, dizziness, shortness of breath, and chest pain (but wives had no documented heart disease). It would be important to let spouses know that feeling stressed is a common experience for spouses of heart 9

transplant recipients and other chronically ill patients. In the present study, spouses rated the trans~ plantation-specific items on the STSS as the most stressful during the wait for a donor heart. Indeed, the five worst stressors related directly to the transplantation waiting experience and to the uncertainty of the outcome of that experience. The most stressful factor was fear that the patient might die before a donor heart became available. Similarly, Buse and Pieper ~3reported that the fear of the partner's death was most stressful for spouses before transplantation. In addition, Bedsworth and Molen 3~ found that the greatest threat identified by 20 spouses of patients with a recent MI was the fear of their mate's death. 3~ Lazarus and Folkman ~7note that event uncertainty is a situational factor that influences the individual's appraisal of the event. From clinical experience it is known that spouses and their ill partners frequently state that not knowing when or if the transplantation will occur is the worst part of the pretransplantation process. Spouses and patients find that the uncertainty and lack of predictability of if or when the transplantation will occur leave them feeling that they have no control over the situation. Such lack of control can lead to increasing levels of stress in many spouses. Significant differences were found in the stressor scores between those who worked outside the home and those who did not. Those who worked outside the home had significantly more total stressors, socioeconomic stressors, responsibility stressors, and stressors related to self. Interestingly there was no significant difference between the groups in the transplantation stressor score; therefore workers and nonworkers were equally stressed by the transplantation experience. Those who worked outside the home tended to be younger and under more socioeconomic strain. This makes intuitive sense in that younger subjects would have dependent children and would probably still have mortgage payments. Older subjects may be more finan~ cially settled than younger subjects. Responsibility stressors and stressors relating to self also were significantly higher in the group who worked outside the home. Those working outside the home would probably find added responsibilities for an ill spouse more stressful because they have less time to handle such responsibilities. For example, taking an ill spouse to the clinic may provide a needed ]0

break for a subject who does not work outside the home, whereas a working subject may be under a great deal of stress trying to get the time off from work to accomplish the same task. Last, those working would undoubtedly have less time for themselves and thus would report more stressors relating to themselves personally. Spouses of patients awaiting HT in an ICU reported significantly more socioeconomic stressors even though there was no significant difference in their income. Many of the socioeconomic stressors on the STSS relate to paying medical bills and worrying about medical insurance coverage. It follows that spouses whose mates were awaiting transplantation in an ICU would have greater concerns about mounting medical bills and insurance coverage than those not awaiting transplantation in an ICU. Again, in keeping with the Lazarus and Folkman conceptual framework, various situational factors influence the spouse's appraisal of event (partner waiting for heart transplantation). It was first thought that spouses of more critically ill patients (patients in the SCU) would find the transplantation concerns more stressful than spouses of patients not so critically ill (patients not in the ICU); the data, however, did not support this premise. Perhaps the reason for this finding is that as patients become sicker and need to be in an ICU, their priority on the national computerized HT waiting list becomes higher; thus the likelihood of transplantation is greater for those waiting in an ICU versus those who are not, thereby reducing transplantationrelated stressors. The impact of HT waiting time on the stressors perceived by spouses of HT candidates is interesting. Spouses whose mates were waiting 6 months or more reported more self-stressors than those waiting less than 6 months. The factors on the self subscale of the STSS include spouses not having time for themselves; spouses not being able to sleep well; a decline in the spouse's social life; and spouses changing their lifestyle as a result of their mate's illness. Perhaps these stressors become prominent at about 6 months of waiting for a heart transplantation. Longitudinal data need to be collected to assess whether spouses adapt to the stressors over time. IMPLICATIONS PRACTICE

FOR

NURSING

The data from this study suggest several areas in which nurses can provide assistance to JANUARY/FEBRUARY1996 HEART & LUNG

spouses of HT candidates. First, most of these spouses rated their overall level of stress as high; therefore spouses with ill mates may be more vulnerable to stress-related diseases and disorders. Nurses can encourage spouses to take care of themselves and suggest some stress-reducing activities such as talking to other spouses or relaxation exercises. Spouses rated factors related to the transplantation experience as being the most stressful for them during the wait for a donor heart. Perhaps nurses need to be more open to talking about such fears with spouses, which would assist them to cope successfully with the HT wait. The establishment of support groups for spouses and other family members of HT candidates may be helpful to families trying to cope with this tremendous strain. (It is not known whether subjects in this study participated in support groups, although all three sites had support groups for patients and families). In addition, spouses rated not knowing when or if the HT would take place as most stressful. Such uncertainty and lack of control over their mate's receiving a heart may lead to increasing levels of stress among spouses. Giving back some control to spouses may alleviate some of the anxiety of this inherently stressful situation. For example, giving spouses some power over visiting hours may help establish more of a feeling of being in control of the situation. Some spouses may choose to exercise their control in ways that health care workers may not recognize (i.e., bringing food in from home, refusing medical procedures for their spouse, or arranging the environment in unusual ways). Such actions often are viewed by nursing personnel and others as noncompliant or difficult. In actuality, these actions may be a small way in which spouses (or patients) can take control over a very stressful situation. When understood in the appropriate context, this need for control can be channeled appropriately and have positive consequences for the spouse, the patient, and health care personnel. Working spouses reported more responsibility and self-related stressors. In a survival guide for spouses of patients with cardiac illness, Levin s2 discusses the "right responsibility" for these spouses. Levin states that the right responsibility is action based on an accurate perception of reality and involves encouraging independence. Conversely, overly responsible spouses assume too much responsibility for their partner's care. Discussing these issues with HEART & LUNG VOL. 25, NO. I

spouses of HT candidates at the time of the HT evaluation may lessen the spouses' concerns relating to what their partner is capable or not capable of doing. Last, spouses are highly stressed by the HT waiting process; Quite often HT coordinators send patients and their spouses who have been waiting for HT for a long time to talk with newly listed patients and spouses about t h e waiting experience. This practice seems beneficial for the newly listed patients and spouses, but perhaps nurses need to think about the timing of these visits on the seasoned candidates and spouses, and whether this practice adds more stress to the family or conversely serves as an outlet for them. Whichever the case, nurses must include spouses in their nursing interventions and pay attention to their needs throughout the often long HT process. IMPLICATION

FOR

RESEARCH

Future research in this area needs to be directed toward studying the spouses over time to determine whether their stress changes during the wait for transplantation and during the time after transplantation. Data from the spouses of HT patients need to be compared to that of HT patients to develop a more comprehensive picture of how HT affects the family, and to understand how stress and coping patterns of patients and their spouses affect each other. In addition, other family members, particularly children, need to be studied to ascertain how the HT process affects them. Patients and spouses often express concern about how their children are being affected by their parent's wait for a heart. However, children are often too young to have ready access to hospital support systems a n d often are cared for by extended family during some or all of the wait for HT. Last, intervention studies could be designed to reduce stress during the wait for HT and afterward. REFERENCES

l. KriettlM, KayeMP.The registryof the International Societyof Heart Transplantation: seventhofficial report--1990. I Heart Lung Transplant 1991;10:323-30. 2. HosenpudJD,NovickRJ,BreenTJ,DailyOP.The registryof the International Society of Heart and Lung Transplantation: eleventh official report--1994. J Heart Lung Transplant 1994;13:561-70. 3. UNOS. Patients waiting for transplant. UNOS Update 1995;11:42. 4. ]alowiecA, GradyKL, White-Williams C. Stressorsin patients awaiting a heart transplant. BehavMed 1994;19:145~54. 5. Muirhead J, MeyerowitzBE, Leenham B, EastburnTE, Merrill WH, Frist WH. Quality of life and coping in patients awaiting | 1

heart transplantation. I Heart Lung Transplant 1992;11:26572. 6. Christopherson LK. Cardiac transplantation: a psychological perspective. Circulation 1987;75:57-62. 7. LevensonJL; Olbrisch ME. Shortage of donor organs and long waits. Psychosomatics 1987;28:399-403. 8. Porter RR, Baily C, Bennett GM, et al. Stress during the waiting period: a review of pretransplantation fears. Crit Care Nurs Q 1991;13:25-31. 9. FreemanAM I11,Watts D, Karp R. Evaluation of cardiac transplant candidates: preliminary observations. Psychosomatics 1984;25:197-207. 10. O'Brien VC. Psychological and social aspects of heart transplantation. Heart Transplant 1985;4:229-31. 11. Mai FM, McKenzie FN, Kostuk WJ. Psychiatricaspects of heart transplantation: preoperative evaluation and postoperative sequelae. BMJ 1986;292:311-3. 12. Grady KL, JalowiecA, Grusk B, White-Williams C, Robinson I. Symptom distress in cardiac transplant candidates. HEART LUNG1992;21:434-9. 13. Buse SM, Pieper B. Impact of cardiac transplant on the spouse's life. HEARTLUNG1990;19:641-7. 14. Mishel MH, Murdaugh CL. Family adjustment to heart transplant: redesigning the dream. Nurs Res 1987;36:332-8. 15. Nolan MT, Cupples SA, Brown MM, Pierce L, Lepley D, Ohler L. Perceived stress and coping strategies among families of cardiac transplant candidates during the organ waiting period. HEARTLUNG1992;21:540-7. 16. Collins EG. Spouse Transplant Stressor Scale. Maywood, Illinois: Loyola University, 1993. 17. Lazarus RS, Folkman S. Stress, appraisal, and coping. New York: Springer, 1984. 18. lalowiec A. Age and gender differences in heart transplant outcomes. NIH: National Institute of Nursing Research (# NR01693), 1993.

19. McCubbin H, Comeau J, Harkins JA. FIRM: the Family Inventory of Resourcesfor Management. Madison: University of Wisconsin, 1981. 20. JalowiecA. Jalowiec Coping Scale. Maywood, Illinois: Loyola University, 1987. 21. Ferrans C, Powers M. Quality of Life Index. Chicago, Illinois: University of Illinois, 1984. 22. McCubbin H. Patterson JM, Wilson LR. FILE: Family Inventory of Life Events and Changes. Madison: University of Wisconsin, 1981. 23. Jalowiec A, Grady KL, Grusk B. Heart Transplant Stressor Scale. Maywood, Illinois: Loyola University, 1988. 24. Artinian NT. Spouse Stressor Scale. Detroit, Michigan: Wayne State University, 1988. 25. Artinian NT. Stress experience of spouses of patients having coronary artery bypass during hospitalization and 6 weeks after discharge. HEARTLUnG1991;20:52-9. 26. Bohachick P, Anton BB. Psychosocialadjustment of patients and spouses to severe cardiomyopathy. Res Nurs Health 1990;13:385-92. 27. Gilliss CL. Reducing family stress during and after coronary artery bypass surgery. Nurs Clin North Am 1984;19:103-12. 28. Mayou R, Foster A, williamson B. The psychological and social effects of myocardial infarction on wives. BMJ 1978;1:699-701. 29. Sexton DL, Munro BH. Impact of a husband's chronic illness (COPD) on the spouse's life. Res Nurs Health 1985;8:8%90. 30. Stern MJ, PascaleL. Psychosocialadaptation post-myocardial infarction: the spouse's dilemma. I Psychosom Res 1979;23:83~7. 31. Bedsworth J, Molen J. Psychological stress in spouses of patients with myocardial infarction. HEARTLUNG1982;11:4503. 32. Levin RE Heartmates: a survival guide for cardiac spouses. New York: Prentice-Hall, 1987.

APPENDIX I: Subscales for STSS Transplant stressors (N=20, ~=0.90)

Worrying about children having heart disease

W a i t i n g for t r a n s p l a n t a t i o n N o t k n o w i n g if d o n o r h e a r t w i l l b e c o m e a v a i l able Feeling guilty about spouse getting someone else's heart Feeling angry that more people do not donate organs Worrying that new heart might not work Afraid spouse might die L a c k of i n f o r m a t i o n a b o u t t r a n s p l a n t a t i o n Communicating with many different doctors and nurses Having my questions answered N o t b e i n g k e p t i n f o r m e d of s p o u s e ' s c o n d i t i o n Not understanding information given Not knowing when transplantation will take place N o t k n o w i n g if t r a n s p l a n t a t i o n w i l l t a k e p l a c e N o t k n o w i n g s p e c i f i c facts a b o u t s p o u s e ' s condition W o r r y i n g if m e d i c a l p e r s o n n e l w i l l t a k e g o o d care of s p o u s e Understanding spouse's feelings Worrying transplantation might change spouse W o r r y i n g a b o u t e f f e c t of s u r g e r y on s p o u s e

Socioeconomic stressors (N=9, t~=0.86)

12

F e e l i n g t h e r e is n o h o p e for s p o u s e

Limited finances because of spouse's illness Having to get job because of spouse's illness Losing job Not being able to do job as well as before Having to take time away from job because of spouse's illness Worrying about paying medical bills Worrying whether medical insurance will cover costs W o r r y i n g a b o u t p a y i n g b i l l s in g e n e r a l H a v i n g to go on p u b l i c a s s i s t a n c e

Responsibility stressors (N=9, ~=0.79) Needing to take on new responsibilities Helping spouse take medication Helping spouse limit fluid intake Spouse relying on me more than before Others relying on me more than before Taking spouse to hospital/clinic/doctor Preparing special diet for spouse C a r i n g for sick o r e l d e r l y r e l a t i v e A r r a n g i n g care for sick o r e l d e r l y r e l a t i v e

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Stressors related to self (N=23, ~=0.92) F e e l i n g n o o n e is c o n c e r n e d a b o u t m y h e a l t h Not being able to talk about fears and concerns N o t h a v i n g t i m e for m y s e l f A f r a i d t o t a k e t i m e for s e l f N o t b e i n g a b l e t o p l a n for f u t u r e Not being able to take vacations Not being able to sleep well

Decline in social life Not having control over life Needing to rely on others My alcohol and/or drug abuse My spouse's alcohol and/or drug abuse

Having to change lifestyle because of spouse's illness Change in sexual activity Fear of having sex because of spouse's illness Less (or no) sex in my life Less (or no) affection in my life Increased conflict in my family Adjusting to spouse's illness Close friend or family member recently died Having to do things slower because spouse cannot keep up Protecting spouse from everyday problems Feeling I have no one to protect me

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