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Patient and family adjustment to kidney transplantation with and without an interim period of dialysis.

End stage renal disease (ESRD) affects thousands of persons in North America each year. Kidney transplantation is considered the treatment of choice for the majority of ESRD patients (Sodal et al., 1987). However, kidney transplantation is not a permanent cure for ESRD and it is not without risks, including graft rejection, changes in body image due to the effects of immunosuppressive therapy, and the risk of infection either postoperatively or as a side effect of prolonged immunosuppression. Although transplant recipients are no longer subject to the constraints and stresses imposed by dialysis, their lives are not stress-free (Frey, 1990), and the threat and uncertainty of graft rejection and returning to dialysis is an ever present reality.

In the past, the majority of patients diagnosed with ESRD were started on dialysis and some proceeded to kidney transplantation. A small number of patients received kidney transplants prior to the initiation of dialysis, usually from living donors. Currently, the idea of preemptive transplantation is increasingly attractive, as it is thought that many of the problems patients experience while receiving dialysis might be ameliorated if patients were transplanted before dialysis is required (Baer, 1997; Donnelly, Oman, Henderson, & Opelz, 1995). Furthermore, it has been demonstrated that quality of life (QoL) is improved in transplant patients as compared to individuals on maintenance dialysis (Evans et al., 1985; Laupacis et al., 1996). In addition to avoiding specific health problems and potentially improving QoL, preemptive transplantation can be more cost effective than long-term dialysis (Laupacis et al., 1996). Investigators claim that receiving a kidney transplant before commencing dialysis does not affect patient and graft survival (Fryd et al., 1987; Tegzess et al., 1987). Donnelly and colleagues (1995) argued that living donor preemptive transplantation can provide results that are as good as, or possibly better than, those of transplantation following institution of dialysis.

The limiting factor to preemptive transplantation is the availability of organs. Approximately 130 kidney transplants were performed in British Columbia (B.C.), Canada on an annual basis, and it was anticipated that 200 kidney transplants per year would be performed in the province in the next several years (Keown, personal communication, 1989). In B.C., as in other places (Kumar, White, Samhan, & Abouna, 1987; Sodal et al., 1987; Tegzess et al., 1987), some patients were being pre-empted to transplantation without a dialysis period, receiving kidneys from living-related donors, living-unrelated donors (emotionally related donors), or nonliving donors. Although the trend in B.C. has been to transplant ESRD patients as early as possible, with some patients now being transplanted without a dialysis period, no studies have been conducted to explore the adjustment of these patients. When the rigorous process of dialysis, which is known to have effects on patients and their families, does not occur, what influence might that have on their subsequent adjustment? Since the family is an important part of a patient's support system, it is believed that any study of adjustment should also include the perceptions of family members. Our purpose in this exploratory study was to examine the process of patient and family adjustment to kidney transplantation and to compare differences in those who had and those who did not have dialysis pretransplant.

Theoretical Framework

Family stress theory formed the theoretical framework, as it helped to identify family adjustment processes to stressful situations (McCubbin & Thompson, 1987). A life-threatening disorder such as ESRD generates considerable anxiety in families, often altering communication patterns, roles, and relationships. Families who have a member with ESRD change as they take in new information, try new ways of coping, and adjust to changes over the illness course. The importance of family stress theory to family transitions and adjustment to major changes and illness is based on central roles that family characteristics, assessments, resources, and capabilities play in explaining family behavior. Family adjustment is determined by the stressor event and its severity interacting with individual and family characteristics and resources that interact with assessments of the situation and coping responses used. "Pile-up" of stressors is a predictor of family adjustment. Resources and capabilities help resist change, buffer impact, and promote adjustment. The framework has been diagramed in Figure 1 and illustrates the major variables in the adjustment process. In addition, the instruments have been identified that are used to operationalize each of the major concepts in this study. Assessment or appraisal is influenced by such factors as magnitude of concurrent and prior stressors, sense of coherence, uncertainty, and family support resources.

[FIGURE 1 OMITTED]

Success and failure of treatment procedures are often measured by morbidity and mortality data and, in the case of transplantation, by focusing on graft survival. However, how the patient and family adjust to transplantation is also important. Transplantation influences individual and family coping processes and subsequent changes in outcomes that reflect adjustment such as health, lifestyle, and well-being. Some authors refer to these reflections of adjustment as QoL indicators. Adjustment is, therefore, a process rather than an end state. It can be considered a state of physical, mental, and social well-being and incorporates sickness impact and quality of family relationships. The literature review that follows has been organized to reflect the adjustment process and factors that influence adjustment, such as type of treatment, personality factors, and appraisal of uncertainty and stress. Because processes of adjustment and outcomes are often reflected as QoL indicators, relevant studies are included that address QoL.

Literature Review

There is evidence that the perceived stress of treatment may have a negative impact on outcomes such as QoL and psychosocial adjustment of dialysis and transplant patients (Frey, 1990; Juneau, 1995) and that there may be differences depending on the treatment selected (Laupacis et al., 1996; Park et al., 1996). For instance, while both hemodialysis and peritoneal dialysis help to sustain the lives of persons with ESRD, numerous physical and psychological problems accompany each regimen (Oreopoulos & Khanna, 1982; Starzomski, 1986, 1987; Wai, Burton, Richmond, & Lindsay, 1981).

A Canadian study of QoL in ESRD patients compared 103 transplant, 60 home hemodialysis, 57 home/self-care, and 52 continuous ambulatory peritoneal dialysis (CAPD) patients. The investigators reported that QoL (where death is 0 and full health is 1), was perceived as highest by transplant patients (.84), followed by .56 for the CAPD patients, .49 for the home/self-care hemodialysis patients, and .43 for the hospital hemodialysis patients. Physical functioning was more important than social or emotional functioning (Churchill et al., 1987).

In a recent study examining the QoL and cost-utility of renal transplantation, Laupacis and colleagues (1996) studied a prospective cohort of 168 pretransplant patients followed for up to 2 years (an average of 19.5 months after transplantation). QoL was measured using a hemodialysis questionnaire, a transplant questionnaire, the Sickness Impact Profile, and the Time Trade Off Technique. Treatment costs were determined by prospectively recording resource use of all patients. By 6 months posttransplant, the mean QoL scores on almost all measures had improved compared to pretransplant, and they remained improved throughout the 2 years. For example, a mean time trade-off score of 0.57 was noted pretransplant and increased to 0.70 by 2 years posttransplant. In addition, the proportion of individuals employed increased from 300/0 pretransplant to 45% 2 years posttransplant with employment prior to transplant, graft function, and age independently predicting employment after transplantation. The cost of pretransplant care ($66,782 [in 1994 Canadian dollars]) and the cost of the first year posttransplant care ($66,290) were similar, however, transplantation was considerably less expensive during the second year posttransplant. These findings led the investigators to conclude that renal transplantation was more effective and less expensive than dialysis.

Having a family member undergo dialysis or a kidney transplant is experienced by the whole family by virtue of the disease chronicity and the physical and psychological stressors (Frank, 1988). Support systems are important to successful adjustment to life on dialysis (O'Brien, 1983; Rodrigue, Greene, & Boggs, 1994) and to life before, during, and after transplant (Evans et al., 1985; Simmons, Anderson, Kamstra, & Ames, 1985). Family support is important to the patient's ability to deal with the disease and its treatment and to the patient's rehabilitation. Satisfying, cohesive, and supportive relationships facilitate recovery. Patients perceiving more supportive families exhibit more favorable adherence to fluid restrictions than patients reporting less support (Christensen et al., 1992).

Individuals with ESRD may move into the sick role with its accompanying expectations of dependence, loss of control, and status (Laborde, 1980). Dependency/independency conflict is particularly noted with patients requiring dialysis (Frank, 1988). This may lead to husband/wife, parent/child, occupation, and social role shifts leading to family role strain and affecting family functioning. Interestingly, Chowanec and Binik (1989) found no difference in marital relations or psychological well-being in couples at different points in the progression and treatment of ESRD. Voepel-Lewis and colleagues (1990) reported a large number of stressors related to the transplant experience in family members of kidney transplant recipients 6 months posttransplant. Family members used a variety of coping strategies, particularly self-controlling and problem solving strategies. Frazier, Davis-Ali, and Dahl (1995) examined stressors, social support, and adjustment in kidney transplant patients and spouses. They found that patients experienced more overall stress than spouses, although on some issues spouses were equally or more stressed than patients. Some of the most stressful aspects of posttransplant life for patients and spouses were financial concerns, side effects of medications, and interpersonal relationships. Although both were concerned about uncertainty regarding the patient's future, spouses were more stressed than patients in this area. The investigators postulated that patients were more "present-focused" and were dealing with the day-to-day aspects of treatment, while spouses were future-oriented and did not have the daily preoccupations of illness. Dealing with medical routines and personnel were least stressful, perhaps because there were aspects of the medical routine over which they felt they had some control. Patients and spouses did not differ on marital satisfaction, but patients reported more depression than spouses.

Personality is believed to be a mediating factor in coping with stressors. The role of personality as a mediating factor has been studied with regard to the effects of stressful life events on the onset of illness variables and adjustment to chronic illness (Kobasa, 1982; Pollock, 1986). The stress-resistant variables of sense of coherence (SOC) (Antonovsky, 1979; 1987) and hardiness (Kobasa, 1982) reflect this perspective. According to Antonovsky (1987), the sense of coherence is a major determinant of maintaining one's position on the health ease/disease continuum and of movement toward the healthy end. The construct encompasses comprehensibility, manageability, and meaningfulness.

Managing uncertainty associated with illness and treatment may be an essential task in adjustment (Bidnick, 1986; Mishet, 1984). Uncertainty is prevented or decreased when events are familiar. The longer patients live with a disease, the less uncertainty they experience (Braden & Lynn, 1987; King & Mishel, 1986). Lack of congruence between the expected and the experienced creates questions concerning stability and predictability. For example, patients with a history of coronary artery disease experienced more uncertainty recovering from a myocardial infarction than patients having their first exposure to coronary artery disease (Webster & Christman, 1988). Unmet expectations of cure generate uncertainty when a treatment effect is not achieved by a predetermined time (Mishel, 1985). Physiological malfunction can lessen information-processing abilities. Impairment of memory and thinking, whether due to demands that monopolize cognitive resources or factors that alter cognitive abilities, weaken the accuracy of appraisal, causing environmental events to be perceived as uncertain. Education assists in decreasing uncertainty by providing meaning and context. Christman et al. (1988) found that those with less education needed more time to construct meaning and context and experienced uncertainty for a longer period of time.

Support from such sources as family have both a direct and indirect influence on uncertainty (Hilton, 1987; Mishel & Braden, 1987). Uncertainty can be appraised as a danger or an opportunity: it is not inherently a dreaded or desired state until the implications are determined (Mishel, 1988). In illnesses with downward trajectories, uncertainty about the outcome may be seen as positive and influence patients to be more adherent to their treatment regimen if they believe in the potential of recovery (Capritto, 1980). Support for the link between oppommity and hope was found in family members of heart transplant patients who evaluated uncertainty of their future as a second chance at life when contrasted with the certain death that had awaited their spouses (Mishel & Murdaugh, 1987). Uncertainty about the future was one of the most highly ranked stressors for CAPD and hemodialysis patients (Bihl, Ferrans, & Powers, 1988). Patients believed the future outcome of their illness was unpredictable and beyond their control. Baldree, Murphy, and Powers (1982) proposed that renal patients ranked uncertainty of the future as highly stressful because they recognized their inability to control the treatment or the illness outcome, but in Gurkis and Menke's (1988) replication study, where the patients had been on dialysis longer, uncertainty of the future was less stressful. No data are available on how ESRD patients view uncertainty nor how uncertainty changes over time.

The literature, therefore, reflects the view that ESRD patients usually do better after transplantation than while on dialysis, but no studies were found that examined patient adjustment when transplantation occurred without interim dialysis. Although dialysis has been shown to have a profound effect on families, few investigators have examined family adjustment to the transplant process.

Research Questions

Our focus in this study was to answer the following research questions:

1. What are the changes in the assessment of the situation and adjustment to kidney transplantation for ESRD patients from the pretransplant stage through to the posttransplant period?

2. What are the differences in the perception of the situation and adjustment between ESRD patients and families who have a kidney transplant with an interim dialysis period and ESRD patients and families who are transplanted without a dialysis period?

Methods

Design. To capitalize on the benefits of longitudinal and cross-sectional approaches, a mixed method approach, described by Aaronson and Kingry (1988), was used. In this approach, both a longitudinal study design and a cross-sectional design are used at the same time. An advantage of this mixed method approach is that greater confidence can be placed in the validity of cross-sectional results about change because the results are supported by longitudinal evidence. Twenty patients with ESRD and their partners were studied longitudinally at three points: during the pre-kidney transplant assessment phase and then at 3- and 6-months posttransplant. Forty-seven patients and their partners comprised the cross-sectional sample. Participants comprising the cross-sectional sample provided responses from at least one of the three time points. It was expected that by 3 months, patients would have recovered from the surgical procedure but still be at high risk for rejection and side effects of the immunosuppressive drugs, and by 6 months, patients and families would more likely be settled back into their normal routine and the risk of rejection would be somewhat less. Those transplanted after a period of dialysis were compared with those transplanted without dialysis.

Sample. Patients and their partners were recruited from two large metropolitan hospitals in Western Canada. Approval to conduct the study was obtained from the Research Ethics Committee at the University of British Columbia. Participants in the longitudinal sample were in the pretransplant assessment phase and were expected to be activated to the transplant waiting list or were waiting for a living donor transplant. Those in the cross-sectional sample were from one time point: 39 had data collected pretransplant, 5 at 3 months and 9 at 6 months. All patients were at least 18 years of age, living with a partner, able to read and speak English, and had consented to participate. There were no differences between the longitudinal and cross-sectional groups in terms of age, years of education, number of children, gender, race, marital status, and whether they received pretransplant erythropoietin (EPO). In the longitudinal sample, 25% were female compared to 35% in the cross-sectional sample. Age ranged from 25 to 75 years of age (M=52) and years of education ranged from 4 to 19. Number of children ranged from 0 to 7.

All patients in the longitudinal sample received kidneys from cadaveric donors, while in the cross-sectional sample, 15 received cadaveric kidneys, 8 received living donor kidneys, and 24 had not been transplanted. There was no significant difference between the cross-sectional and longitudinal samples in whether they had dialysis prior to transplant or what type of dialysis they received. In the longitudinal sample, 3 had not had prior dialysis, 11 had hemodialysis, and 6 had CAPD prior to transplant; while in the cross-sectional sample, 7 were transplanted predialysis, 28 had dialysis, and 12 had CAPD.

Data collection procedures and instruments. Contact with potential participants was made when patients had their pretransplant assessment by the surgeon, transplant nephrologist, nurse, and social worker. If sample criteria were met, the study was discussed with the patient and their partner and consents were obtained. Patients were asked to complete the patient questionnaires and partners were asked to complete the family questionnaires and to return them in the stamped return envelope within 1 week. Data collection for the other periods was done by mail-out questionnaire. Follow-up reminders were carried out by phone.

Partners were asked to complete the Family Inventory of Life Events and Changes (FILE) pretransplant, the Family Inventory of Resources of Management (FIRM) pretransplant and at 3 months, and the Feetham Family Functioning Survey (FFFS) pretransplant and at 3 and 6 months. Patients were asked to complete the Sense of Coherence Scale (SOC) pretransplant and 6 months, and the Uncertainty Stress Scale (USS), Sickness Impact Profile (SIP), and the FFFS at each of the data collection points. Having the partner complete the FILE and the FIRM was to ensure that patients would not be over burdened responding to questionnaires.

SOC was measured using the short form version of the SOC scale (Antonovsky, 1987). A sense of coherence is a global orientation that expresses the extent to which one has a pervasive, enduring though dynamic feeling of confidence that one's internal and external environments are predictable and there is high probability that things will work out as well as can reasonably be expected (Antonovsky, 1979). The SOC scale measures comprehensibility, manageability, and meaningfulness. Evidence of internal consistency and test-retest reliability, construct, and predictive validity are reported (Antonovsky, 1979 1987, 1993). Cronbach alpha for internal consistency reliability for this study was .87.

The magnitude of stressors is an indication of tension within the family system and was measured with the FILE (McCubbin & Thompson, 1987). The nine dimensions measured included intra-family strains, marital strains, pregnancy and childbearing strains, finance and business strains, work-family transitions and strains, illness and family care strains, family losses, transition strains, legal strains, and pile-up of strains. Evidence is reported for test-retest and internal consistency reliability, construct, and predictive validity (McCubbin & Patterson, 1987; McCubbin & Thompson, 1987; Moos, 1974; Nolan et al., 1992). Cronbach alpha for this study was .82.

The family's personal, internal, and social support resources were measured with the FIRM (McCubbin & Comeau, 1987). Reliability and validity has been established (Leavitt, 1990; McCubbin & Thompson, 1987). Cronbach alpha for this study was .76 for the pretransplant period and .91 for the posttransplant period.

Appraisal of uncertainty, the cognitive state created when an event cannot be adequately structured or categorized because sufficient cues are lacking, was measured with the USS (Hilton, 1994). This scale assesses total uncertainty, global uncertainty, and stress, threat, and opportunity generated by uncertainty. Internal consistency for this sample was .98. The scale has evidence of content and construct validity (Hilton, 1994).

Adjustment is considered the state of physical, mental, and social well-being and incorporates sickness impact and quality of family relationships. The SIP is a measure of perceived health status and provides a profile of the changes in a person's behavior due to sickness (Bergner et al., 1976). The scale measures health status by assessing the impact of sickness on changing daily activities and behavior, and change in performance rather than emphasizing capacity (Gilson, Bergner, Bobbitt, & Carter, 1979). The SIP contains 136 items that represent different aspects of daily functioning. Each item describes changes in behavior attributable to health status. Four categories (ambulation, mobility, body care, and movement) are aggregated into a physical dimension and four categories are aggregated into a psychosocial dimension (social interaction, communication, emotional behavior, and alertness behavior). Five other categories (eating, work, sleep and rest, household management, and recreation and pastimes) are not aggregated. Weights are used in calculating each activity (Bergner, Bobbitt, Carter, & Gilson, 1981). Considerable evidence is available for internal consistency and test-retest reliability and for content, construct, and criterion-related validity (Bergner, Bobbitt, Pollard, Martin, & Gilson, 1976; Bergner et al., 1981; Evans et al., 1985; Nolan et al., 1992).

Family well-being is the functioning of the family in terms of relationships within and outside the family. The FFFS (Feetham & Humenick, 1982; Roberts & Feetham, 1982), a 25-item scale, measures three major areas of family function: the relationships between the family and broader social units, including family and community, and family and economy; the relationships between the family and subsystems, including the division of labor; and relationships between the family and each individual. Two additional items focus on whether there are children and if they are living at home. In addition, two questions allow respondents to add information about what is most difficult and most helpful to them related to family functioning. The scale allows for measurement of the existing degree of need fulfillment, the discrepancy between achieved and expected levels, and the importance of the item content. For example, respondents are asked about discussing concerns and problems with their partner: they are asked how much time they spend doing that now, how much time they think there should be, and how important it is to them. Support for the scale's internal consistency and its construct and concurrent validity is available (Thomas & Barnard, 1986). The major results for the FFFS relate to satisfaction of patients and partners in terms of the importance of those particular areas of family life. Satisfaction for each partner is calculated by subtracting what is perceived as currently occurring from the amount/degree of what amount is considered desirable. Positive scores reflect that more is wanted than is occurring, while negative scores reflect that more occurs than is desired. Zero scores reflect a balance between what is happening and what is wanted (i.e., satisfaction).

Data analysis procedures. To minimize missing data, research assistants checked questionnaires and followed up with participants to complete data collection forms. Missing data, however, did occur and were handled as follows. If more than 20% of items on a subscale were missing, the subject was omitted from that component of the analysis, otherwise, item means were substituted and rounded to the nearest whole number. Descriptive statistics were used to reflect the range and mean scores for the cross-sectional and longitudinal samples. Nonparametric procedures were used because of the small sample size and non-normative distribution. To compare longitudinal and cross-sectional groups, and compare those preempted to transplant with those who had dialysis, the Mann Whitney U test was used. To analyze change over time, the Friedman matched samples test was used. The Wilcoxin matched pairs signed-rank test was used to determine where differences were when the Friedman analysis indicated significant change over the three periods of data collection (see Teaching Sidebar) (Munro, 1997).

Findings

To report the changes in assessment of the situation and adjustment to kidney transplantation from the pretransplant stage through to the posttransplant period, the variables are described for the total sample for each time period (see Table 1). Each variable was analyzed for change over time and for differences between groups. When examining change over time, longitudinal data only were used. There was no significant change in SOC from pretransplant to 6 months posttransplant. The number of family stressors (FILE) varied widely, but generally, other than for a few families with major stressors, most families had few or moderate numbers of stressors over the prior year. The most common stressors were related to impact of illnesses and deaths, stresses in relationships, household management events, finances, and employment situations. In terms of family resources, there were no changes over time. Uncertainty varied considerably but was generally moderate to low. It decreased significantly from pretransplant to 3 months posttransplant (Wilcoxon Z=-1.9, p=.05) and also from pretransplant to 6 months posttransplant (Z=-2.2, p=.03). Similar areas of uncertainty were dominant across time with emphasis on stability of the patient's condition and ability to function. After transplantation, concerns about early detection of problems became more predominant. There were no significant differences between cross-sectional and longitudinal samples in response to the SOC, FILE, FIRM, and USS scales.

Patients completed the SIP at all three time points. Descriptive statistics are provided for the longitudinal group for all SIP categories (see Table 1). There was a significant decrease in sickness impact from the pretransplant period to 6 months posttransplant for physical impact (Z=-2.16, p=.03).

In terms of the physical impact components, all areas improved, but it was only ambulation where the impact decreased significantly from 3 to 6 months posttransplant (Z=-1.99, p=.047). Mobility, body care, and movement improved but positive impact did not become evident until after 3 months posttransplant.

Psychological impact decreased significantly from pretransplant to 6 months (Z=-2, p=.04). Variation in patterns were observed in the psychological impact components. Impact decreased in terms of social interaction and emotional behavior. Social interaction improved significantly from pretransplant to 3 months posttransplant (Z=-1.9, p=.05) (One item on the emotional behavior scale focuses on pain and discomfort and likely influenced results. It is not clear why pain is included on the emotional behavior scale). Impact on alertness increased significantly at 3 months and then decreased to an equal extent by 6 months. Communication was affected more at both the third and sixth month. It must be kept in mind that for most people there were no changes in alertness, communication, or emotional behavior; shifts were more evident posttransplant primarily for only two people in these areas.

In terms of other categories, there was a significant decrease in impact on sleep and rest (Z=2.265, p=.008), on home management (Z=3.07, p=.002), and on eating (Z=-3.03, p=.002). Although not statistically significant, there was less impact on recreation and pastimes (Z=-1.92, p=.055). There was no significant change in work impact. There were no major differences evident between the longitudinal and cross-sectional groups in terms of physical or psychological impact.

Both patients and their partners completed the FFFS. Because there were difficulties in interpreting five questions related to children, those items were deleted and the resulting total scores were based on 22 items. In terms of satisfaction and dissatisfaction, there was no change in satisfaction over time with patients or partners. In examining specific areas, however, Figure 2 reflects that patients were less than satisfied with several areas of their lives at the pretransplant period, particularly as it related to less leisure time and less help received from relatives than desired, as well as concerns regarding their sexual relationship. In addition, patients indicated that they were ill more than they wished and that the work routines for both they and their partners were negatively impacted in a major way. Major areas of dissatisfaction decreased at 3 months at which point patients said they spent less time with neighbors than desired and sexual relations were still a problem. No major areas of dissatisfaction were identified at 6 months.

[FIGURE 2 OMITTED]

In contrast, partners identified more areas of dissatisfaction and their dissatisfaction increased, whereas the patients' decreased over time (see Figure 3). Disruption related to work for themselves and their partner were concerns at almost all time points. Lack of sufficient leisure time became more apparent after transplant. Many other areas were identified as being moderately unsatisfactory. Patients were generally more satisfied than partners. At 6 months posttransplant, satisfaction was somewhat different, but not significantly so.

[FIGURE 3 OMITTED]

To address the research question related to differences in perception of the situation and adjustment between ESRD patients and families who had a kidney transplant with an interim dialysis period and those who were transplanted without a dialysis period, those preempted to transplant were compared to those who had either hemodialysis or CAPD prior to transplant. There were only 10 patients who were preempted, and some of these patients were in the cross-sectional group so comparisons, at times, involved small numbers. There were no differences between the groups in terms of age, sense of coherence, uncertainty, and total family resources. Generally, there were no differences in satisfaction of patients and partners with family functioning except at the pretransplant period when spouses of preemptive patients were somewhat less satisfied with family functioning than spouses of patients on dialysis (Z=-2.78, p=.02).

Generally, the people who had dialysis prior to transplant experienced more impact in all areas and at all points in free than those who did not have dialysis. In most situations, the impact was greatest pretransplant, and the impact dropped considerably by 3 months, although not necessarily significantly so, and then remained stable or increased slightly at 6 months. This was evident for physical and psychological impact and its components. In terms of statistically significant differences, there was a significant difference at the pretransplant period in physical impact (Z =-2.3, p =.02) and ambulation (Z =-2, p =.047), and at 3 months in physical impact (Z = -1.95, p = .05); those who had dialysis had worse scores in these areas. There was no significant difference in psychological impact or its components between the two groups. There were differences at the pretransplant period in sleep and rest (Z=-2.05, p=.04), home management (Z=-2.04, p=.04), work (Z=2.08, p =.04), and in recreation (Z =2.19, p =.058). Although there were no statistically significant differences related to eating at the pretransplant period, there were differences at 6 months (Z=-1.9, p=.06), with those on dialysis experiencing more problems related to eating.

Discussion

Participants reported a higher than average sense of coherence based on normative data for the 13-item scale (possible score range from 13 to 91) (Antonovsky, 1993). No comparative data were found for ESRD patients, but scores of 45-90 pretransplant and 52-90 at 6 months are similar to those reported for cancer patients (Post-White, 1991). Comparison is not possible with other studies because descriptive sample information was not provided or the scale was altered in previous studies (Lundman & Norberg, 1993; Mullen, Smith, & Hill, 1993; Tishelman, Taube, & Sachs, 1991). Sense of coherence increased slightly but not significantly over time, indicating that sense of coherence is a reasonably stable construct as suggested in the literature.

Compared to the norms for the FILE, these families were under considerable stress (Olson et al., 1983); 40% were coping with low stress, 40% with moderate stress, and 15% with high stress. Illness and family care strains and financial strains were significant. Illness and death, relationships with others, household management events, finances, and employment situations were usually identified as stressful. These findings are similar to other reported studies of transplant families (Frazier, Davis-Ali, & Dahl, 1995) and families of cardiac transplant candidates (Nolan et al., 1992), where low and moderate stress were noted during the organ waiting period. Artinian (1992) studied spouses of coronary artery bypass graft patients 48 hours after surgery, 6 weeks after discharge, and 1 year after surgery. Artinian reported that FILE scores decreased over time but not significantly, with overall scores being reasonably comparable to this current study. In Smith and Robinson's 1995 study, comparing families with an HIV/AIDS homosexual member and families where the ill person was heterosexual, stressors were similar to this study.

Families in this study reported good family strength related to esteem and communication as well as mastery and health compared to the norms. They reported being financially secure. Although present, extended family support was not strong. Gilliss, Neuhaus, and Hauck (1990) found no significant change in FIRM scores over time in patients undergoing cardiac surgery and their spouses. However, Gilliss et al. altered the FIRM, which limits comparison of findings across studies. Leavitt (1990), focusing on families recovering from vascular surgery, reported dramatically lower scores that corroborated reports of acute uncertainty and deteriorating health before surgery. Scores rose dramatically after discharge corresponding to the patient's stated relief about surviving the surgery and early family support. Family scores were stable over time.

The participants in this study obtained generally low to moderate uncertainty scores that decreased over time from pretransplant to posttransplant. As expected, uncertainty was generally highest at the pretransplant period. Items that focused on stability of patient condition generated most uncertainty. Whether they would be able to continue to traction also generated considerable uncertainty for some participants. Frazier et al. (1995) also noted that for both patients and spouses, uncertainty regarding the patient's future health was a major concern. As one might expect, patients saw opportunity in their pretransplant situation, for example, that their health might turn out positively. At 6 months, their assessment of uncertainty as an opportunity decreased, likely because they knew their kidney was functioning well and they were less uncertain. Compared to Swanson's study (1991) of Canadian kidney transplant patients, where transplantation had occurred from 3 to 21 years prior (M=8.5 years), uncertainty was higher at the pretransplant period, but considerably lower than Swanson's at 6 months posttransplant. The smaller sample and longer period from transplant likely influenced the results. Cardiac valve patients experienced considerably higher uncertainty (Ford, 1989), but comparison is difficult because different versions of the USS were used within the two studies.

The findings related to sickness impact are in the expected direction. Physical and psychological impact were highest at the pretransplant period and decreased both at 3 and 6 months posttransplant. Illness impact would likely continue to improve if graft function remained stable. In a larger study that included non-partnered individuals and some participants from the current study (Laupacis et al., 1996), patients were more affected in all categories of the SIP than our results revealed, possibly due to their larger sample size (n=167), greater variability in acuity and inclusion of patients from another province. At 6 months, participants in the current study reported lower impact than reported by Laupacis et al. Sickness impact was less than that reported by Hart and Evans (1987) who compared treatment modalities used in ESRD; the only differences were noted in alertness behavior, communication, and recreation and pastimes where participants in this study reported somewhat higher sickness impact. A sample of cardiac transplant recipients experienced greater sickness impact than did those in this study (Rosenblum, Rosen, Pine, Rosen, & Borg-Stein, 1993).

The SIP has also been administered in studies with other types of patients (McCusker & Stoddard, 1984). Total mean score on the SIP for this current study was much higher than a near typical control sample (Bergner, Bergner, Hollstrom, Eisenberg, & Cobb, 1984) and lower than terminally ill cancer and stroke patients. Heart transplant recipients of over a year had similar SIP scores to the scores in the pretransplant period in this study (Evans, Manninen, & Overcast, 1984).

In terms of family functioning in the pretransplant period, by far, the most important aspects identified by patients and spouses were satisfaction with their marriage, time spent with each other, and the amount of emotional support they received from each other. The emotional support from relatives and friends was also rated highly by both spouses and patients. Patients rated disruption of their work routine and their spouses' routine higher than did spouses. This finding seems logical as it reflects that patients may have felt badly about negatively influencing work routines for themselves and their spouse. Findings also show the incredible support that patients and spouses need from one another and how much they depend upon one another and, to a lesser extent, friends and relatives. Although patients and spouses valued emotional support from friends and relatives, they did not see friends and relatives involved in household tasks, including childcare responsibilities. Patients rated time in leisure and recreational activities as very important. Spouses were very concerned that they remain healthy, and this was seen as particularly important at both pretransplant and posttransplant periods. The importance of a satisfying marriage continued to be rated highly by patients and spouses posttransplant. Areas of importance rated by spouses remained the same from pre- to posttransplant. The only area that changed for patients was in the pretransplant period where disruption of their own and their spouses work was rated higher. Spouses did not rate this area as highly important. Spouses rated discussion with relatives as highly important but patients did not rate this as highly. Perhaps this finding shows that the opportunity to ventilate verbally with relatives was an important source of release for the spouse. The major difference, at all three time points, between patients and spouses was that spouses did not consider getting help from the patient as important as did the patient.

Patients seemed more satisfied with family functioning than spouses. Patients were generally satisfied with family function. Areas of decreased satisfaction included their sexual relationship, the amount of time they were ill, the disruption of their spouses' routine, and their lack of leisure time. Spouses were generally satisfied in their discussions with friends, time with health care professionals, and time they missed work. Both partners and patients were less than satisfied with their sexual relationships throughout the pre-transplant to posttransplant period. Spouses were not happy about the time available for leisure and recreation. Spouses were not as satisfied with their marriage compared to patients and this was an area judged as highly important. Spouses reported that they were unhappy about the amount of time their partner had to miss work and also with the time their routine was disrupted. Patients did not indicate much dissatisfaction in these areas. Although not major, both partners indicated that there were more disagreements with their spouse than they would like to have.

The results are reasonable and reflect the major impact that illness has on the spouse. In some ways, spouses were more affected by issues related to family functioning than patients seemed to be. It is difficult to compare the results of this study to that of others because most studies did not report the results in sufficient detail to make comparisons. A study by Roberts and Feetham (1982) on mothers of babies with myelodysplasia did reflect similar areas of importance and similar areas of satisfaction. It is clear that illness disrupts family functioning and relationships regardless of whether it is a spouse or a child that is ill.

In terms of whether there were differences between those participants that were pre-empted to transplant versus those on dialysis, the results are quite interesting. SIP scores were worse in persons who received dialysis before transplantation compared to patients who did not receive dialysis. Those participants on dialysis pretransplant had more physical and psychological sickness impact. This was likely due to the stage of their renal failure and the sequelae that resulted because of the physical and psychological effects of dialysis. Those who were pre-empted to transplant reported minimal impact, but considerable improvement in their psychological and physical state after transplant. Eating patterns were affected more for the dialysis group than for those preempted to transplant. Because there are no previous studies comparing sickness impact in patients who were pre-empted to transplant, it is not possible to compare the findings to this study. It is an area that requires further exploration and research with a larger sample.

Although, for the most part, there was no difference in patient and spouse satisfaction with family functioning, spouses of pre-emptive patients were somewhat less satisfied with family functioning than spouses of patients on dialysis pretransplant. It is unclear why this difference existed, however, it may relate to the adjustment spouses were making to the fact that their partner was now seriously ill and being assessed for a transplant, whereas other spouses had already experienced life with their partner on dialysis and had made some adjustments to living with a partner with a chronic illness.

Limitations, Implications, and Recommendations

Several limitations are noted in this study. The results must be interpreted with caution because of the small sample size. Also, only participants who could read and write English were included in the study. As Vancouver is an ethno-culturally diverse community, it would be important to study members of the ESRD population from a variety of ethno-cultural groups in order to ensure that those perspectives were included in the development of theory in this area and also so that the clinical implications would be generalizable to diverse groups. In addition, using a questionnaire to gather self-reported information had limitations, as it was difficult to determine why patients and their partners responded the way they did without additional information.

Although most of the scales used were valid in studying people with chronic illness, difficulties were encountered with the FFFS in that it was more oriented to young families with children and less to families with no children or adult children. Also, the method used for data collection presented problems as it required participants to return questionnaires via mail. In some cases, it was difficult to ensure that the questionnaires were returned and data were complete even after several reminder calls to the patients. Furthermore, the time required to complete the longitudinal study was longer than expected because of the increased wait for many patients for a kidney transplant. This meant that the pretransplant phase for patients may have extended over months and their condition may have changed without the knowledge of the investigators.

It is apparent from this study that patients and their partners are under considerable stress as they undergo transplantation. The results also highlight the stress experienced by the spouses of kidney transplant patients both pre and posttransplant. It becomes clear that there is a need for considerable support for both patients and their family members. A well-developed, interdisciplinary series of education support programs are needed at both the pre and posttransplant periods. In particular, a well-organized discharge planning and follow-up program is needed for newly transplanted patients so that they receive accurate information and have access to the interdisciplinary team as needed. As the level of stress varies for different patients and families, there should be opportunities for both individual and group support to meet different needs. Opportunities to meet people who have received organ transplants and their spouses should be made available to all persons added to the transplant waiting list in order to help them understand the implications of the transplant and issues related to adjustment. Furthermore, consideration needs to be given to developing a repertoire of stress reducing activities available to patients and spouses, for example, providing help with how they can navigate the system to acquire the information they need and relaxation techniques.

Although, a few of the above interventions are being implemented in some programs, as health care cutbacks increase, areas related to patient/family support and education are often not given adequate attention. It is evident from the results of this study that there must be adequate resources made available in this area or the potential for unfavorable patient and family outcomes exists.

Finally, it is evident from this study that providing patients with opportunities to have pre-emptive transplants has beneficial outcomes for the patient in terms of reduced sickness impact as well as opportunities to remain active both socially and in the workforce. However, it should also be noted that because patients pre-empted to transplantation reported on their work at 6 months, it is imperative that support be provided up to and after this point to help patients adjust to this major event in their lives. Given the beneficial effects of pre-emptive transplantation, emphasis must be placed on increasing the donor pool so that more pre-emptive transplants can be conducted. Also, comprehensive information needs to be made available about living organ donation, and, of course, emphasis needs to be placed on organ donation and expanding the organ donor pool to ensure that there is an adequate supply of organs available to meet the need.

A number of areas for future research are indicated including replicating this study using a larger sample, patient accrual from multiple sites, and including participants from a variety of ethno-cultural groups. Further study using qualitative methods of data collection, including individual interviews and focus groups, would be helpful to achieve a better understanding of the adjustment of patients and their families to kidney transplantation. Longitudinal studies designed to account for change over time may need to include a series of reassessments every 6 months while patients are on the transplant waiting list to account for changes that may occur from the time they are added to the transplant waiting list to the time they are transplanted.

Since adjustment is a process that takes place over time, the design of this study provided information on individual and family adjustment over time. We believe that an understanding of these considerations can assist researchers and health care providers to comprehend the experiences of patients and families, thus assisting the caregivers in anticipating difficulties and enabling them to provide effective support to patients and families. By knowing more, we can assist patients and families to adjust to living with a kidney transplant and we can reinforce their efforts to respond in a way that promotes personal integrity and optimal health.
Table 1
Descriptive Information on Major Variables for the Longitudinal
and Cross-sectional Samples

                                            Pretransplant
                                              Mean (SD)

Sense of Coherence                         69.5      (12.8)
Family Inventory of Life
Events and Changes
(Number of weighted stressors)            277.6     (269.0)
Family Inventory of Resources
  for Management
                                 Norm
Family strengths I               29-41    123.1      (23.9)
Family strengths II              30-48     42.0      (11.1)
Extended family support          8-12       9.0       (2.7)
Financial well-being             19-37     35.3       (9.0)
Sources of financial support     3-5        4.8       (1.2)
Social desirability              9-15      13.5       (3.6)
Total FIRM                       93-129   123.1      (23.9)
Total Uncertainty                         111.8      (43.4)
Sickness Impact Profile
Total SIP                                   9.0    (SD 8.3)
Physical                                    4.4    (SD 6.3)
Psychological                               8.2    (SD 9.6)
                  For the Longitudinal Sample
Physical Impact
Body care & movement                        2.5    (SD 5.5)
Mobility                                    2.3    (SD 4.6)
Ambulation                                 10.0   (SD 12.6)
Psychological Impact
Emotional Behavior                          6.6   (SD 10.7)
Social Interaction                          9.5    (SD 9.7)
Alertness behavior                          7.2   (SD 14.8)
Communication                               1.6    (SD 5.0)
Other
Sleep & Rest                               18.9   (SD 18.9)
Home management                            13.0   (SD 13.9)
Work                                       18.6   (SD 29.7)
Recreation & Pastimes                      24.3   (SD 19.1)
Eating                                      1.0    (SD 6.2)
Total Patient FFFS
How much there is                          85.5      (12.1)
How much would you like                    88.2      (12.2)
How important                             114.1      (18.1)
Total Partner FFFS
How much there is                          81.8      (12.3)
How much would you like                    86.6      (11.8)
How important                             110.8      (21.2)
Absolute Satisfaction Scores *
Patient Satisfaction                        4.9       (4.0)
Partner Satisfaction                        7.4       (6.5)

                                            3 months
                                          Posttransplant
                                            Mean (SD)

Sense of Coherence
Family Inventory of Life
Events and Changes
(Number of weighted stressors)
Family Inventory of Resources
  for Management
                                 Norm
Family strengths I               29-41
Family strengths II              30-48
Extended family support          8-12
Financial well-being             19-37
Sources of financial support     3-5
Social desirability              9-15
Total FIRM                       93-129
Total Uncertainty                          94.8      (25.0)
Sickness Impact Profile
Total SIP                                   7.3    (SD 7.0)
Physical                                    4.2    (SD 7.0)
Psychological                               6.0    (SD 8.0)
                  For the Longitudinal Sample
Physical Impact
Body care & movement                        2.7    (SD 4.5)
Mobility                                    2.1    (SD 4.6)
Ambulation                                  7.6   (SD 11.2)
Psychological Impact
Emotional Behavior                          3.2    (SD 6.2)
Social Interaction                          3.6    (SD 6.1)
Alertness behavior                         12.7   (SD 23.1)
Communication                               3.1    (SD 6.9)
Other
Sleep & Rest                               10.9   (SD 15.3)
Home management                            13.3   (SD 18.2)
Work                                       16.7   (SD 28.6)
Recreation & Pastimes                      11.0   (SD 14.5)
Eating                                      2.6    (SD 3.9)
Total Patient FFFS
How much there is                          79.2      (16.0)
How much would you like                    81.9      (14.3)
How important                             104.0      (24.9)
Total Partner FFFS
How much there is                          76.5      (13.4)
How much would you like                    79.8      (11.2)
How important                             102.3      (17.3)
Absolute Satisfaction Scores *
Patient Satisfaction                        5.4       (4.8)
Partner Satisfaction                        6.6       (4.8)

                                                6 months
                                             Posttransplant
                                                Mean (SD)

Sense of Coherence                         75.1           (10.1)
Family Inventory of Life
Events and Changes
(Number of weighted stressors)
Family Inventory of Resources
  for Management
                                 Norm
Family strengths I               29-41    123.9           (16.5)
Family strengths II              30-48     43.8            (8.1)
Extended family support          8-12       8.9            (1.9)
Financial well-being             19-37     35.0            (8.3)
Sources of financial support     3-5        5.1            (0.9)
Social desirability              9-15      13.0            (2.7)
Total FIRM                       93-129   123.9           (16.5)
Total Uncertainty                          90.0           (21.9)
Sickness Impact Profile
Total SIP                                   3.4     (SD 4.0) (a)
Physical                                    1.5     (SD 3.5) (a)
Psychological                               3.1         (SD 6.4)
                  For the Longitudinal Sample
Physical Impact
Body care & movement                        1.3         (SD 3.2)
Mobility                                    0.9         (SD 3.8)
Ambulation                                  4.2    (SD 11.9) (a)
Psychological Impact
Emotional Behavior                          3.4         (SD 7.1)
Social Interaction                          3.3   (SD 5.4) (a,b)
Alertness behavior                          7.2       (SD 18.0)
Communication                               3.8        (SD 10.6)
Other
Sleep & Rest                                4.5     (SD 9.1) (a)
Home management                             3.6     (SD 8.5) (a)
Work                                        8.6        (SD 22.3)
Recreation & Pastimes                      15.7    (SD 21.1) (b)
Eating                                      1.2   (SD 2.5) (a,b)
Total Patient FFFS
How much there is                          75.5       (14.8) (a)
How much would you like                    78.3           (18.0)
How important                              99.8           (24.8)
Total Partner FFFS
How much there is                          74.5           (12.2)
How much would you like                    77.9           (10.9)
How important                              98.4           (19.2)
Absolute Satisfaction Scores *
Patient Satisfaction                        3.6            (4.7)
Partner Satisfaction                        6.5            (5.2)

Notes:

(a) p=<.05 for period from pretransplant to 6 months posttransplant

(b) p=<.05 for period from pretransplant to 3 months posttransplant

* absolute difference between what was occurring and what was desired.
Low scores mean greater satisfaction and high scores mean less
satisfaction.


Acknowledgments: The investigators would like to thank all the patients and families who gave generously of their time to be part of this study. Thanks also to research assistants Barb Atwater, Beryl Ferguson, Jan O'Brien, and Kris Gustavson for their valuable assistance. A special thank you to the Kidney Foundation of Canada, Allied Health Scientific Committee, for the financial support that helped to make this study a reality.

Note: Article submitted July 1998; accepted July 1999.

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Teaching Sidebar: Information on the Nonparametric Statistical Tests Used

The Mann Whitney U test is the nonparametric analogue for the t-test.

The Friedmann matched samples test is the nonparametric analogue to a repeated measures analysis of variance.

The Wilcoxin matched pairs signed-rank test is the nonparametric analogue to the paired t-test.

Rosalie Starzomski, PhD, RN, is assistant professor, School of Nursing, University of Victoria, Lower Mainland Campus, Vancouver, British Columbia, Canada.

Ann Hilton, PhD, RN, is professor, School of Nursing, University of British Columbia, Vancouver, British Columbia, Canada.
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Author:Starzomski, Rosalie; Hilton, Ann
Publication:Nephrology Nursing Journal
Geographic Code:1CANA
Date:Feb 1, 2000
Words:10585
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