Perceived Social Support, Anxiety, and Self-Care Among Patients Receiving Hemodialysis

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1 Perceived Social Support, Anxiety, and Self-Care Among Patients Receiving Hemodialysis Mukadder Mollaoglu, PhD The author is with Cumhuriyet University School of Nursing, Department of Medical Nursing, Sivas, Turkey. Background. Hemodialysis therapy requires patients to undergo major lifestyle changes. Patients with increased perceived social support and decreased anxiety are more likely to enhance self-care. Patients and Methods. A descriptive-correlational study design was used to analyze the baseline data of a group of hemodialysis patients (n ¼ 140). Three instruments were used: the Exercise of Self-Care Agency Scale (ESCA), the Hamilton Anxiety Rating Scale (HAM-A), and the Multidimensional Scale of Perceived Social Support (MSPSS). Descriptive, bivariate, and multivariate analyses were completed. Results. Social support and anxiety are significant predictors of self-care after controlling for the effect of time on dialysis. Results indicated that patients who perceived higher levels of social support and lower levels of anxiety were more likely to have a higher level of self-care. Conclusions. Interventions to increase hemodialysis patients perceived social support and decreased anxiety may contribute to an enhanced self-care ability and positive health outcome, and may subsequently improve self-care and the psychosocial adjustment to hemodialysis. Although the psychological and social difficulties experienced by patients receiving dialysis have been observed and commented on for some time, it is only recently that researchers have demonstrated that psychosocial factors are important predictors of patient outcome. 1,2 End-stage renal disease (ESRD) is a chronic illness. Treatment options for the disease often involve either long-term dialysis or kidney transplantation. Hemodialysis (HD)- dependent patients with chronic renal failure must cope with severe restrictions, such as strict adherences to dialysis and medication regimens, dietary and fluid limitations, and minimal physical activities. 1 This involves a wide range of multiple and radical lifestyle changes that affect the individual s social and psychological functioning. The way a person experiences a chronic illness is highly subjective. 3 Ill people have different coping responses and varied coping resources, such as social support. 4 Social support has been extensively studied and refers to the degree of emotional and physical assistance perceived in one s life. Weiss proposed that individuals need a set of relationships over the course of their lives that can help organize their thinking and actions. 5 Fink, Friedman and King, and Graydon and Ross found that the presence of social support enhanced well-being by directly maximizing quality of life and by buffering the effects of adversity. 6 8 Anxiety is a common psychological response in chronic illness. In previous studies, approximately 50% of the respondents indicated borderline or clinically significant signs of anxiety and depression in dialysis patients. 9,10 Relatively little is known about anxiety with this specific treatment stressor and about whether seeking social support is a preferred coping strategy. Although the ameliorative effects of social support in chronic illness have been demonstrated, 11 issues of conflict and reciprocity in the interpersonal relationships of the chronically ill have been ignored. 12 Studies of a patient s adjustment to chronic illness have often focused on the understanding of physical and psychological variables, which influence health outcomes. As treatment is a long-term process, patients have to use strategies to manage their illness. Lev and Owen concluded that patients with a sense of confidence in their ability to perform self-care behaviors are more likely to actually perform these tasks. 13 Thus, individuals with high levels of self-care are better able to manage their ESRD. According to Orem, self-care is a human regulatory function based on an individual s capability to perform his or her own care. 14 Self-care MARCH 2006 DIALYSIS & TRANSPLANTATION 1

2 agency is, in turn, a function of such basic conditioning factors as demographics, family, and environment. 15 Self-care has been described as a strategy for coping with life events and stressors 16 and for enhancing quality of life, 17 thereby promoting independence. Self-care has been influenced by psychosocial factors such as anxiety, depression, life events, stressors, and social support. Most studies of people with hemodialysis have examined these psychosocial factors independently; few studies have focused on social support, anxiety, and self-care ability among patients undergoing hemodialysis. 2,18,19 Understanding the relative contributions of these factors should be essential in the development of counseling plans to enhance the self-care of these patients. It is reasonable to assume that social support and anxiety contribute to self-care in dialysis patients. In this way, psychological distress could be decreased, social support increased, and self-care ability improved. This study, a correlational design, investigated the relationship of perceived social support, anxiety, and self-care in chronic dialysis patients in a hospital in Turkey. Patients and Methods One hundred fifty ESRD patients from the HD units at General Hospital in Sivas, Turkey, were approached to participate in this study. Of them, 4 patients did not understand the questionnaire due to cognitive problems, and 6 patients refused to participate. The remaining 140 patients were interviewed during HD. To meet the study criteria, patients had to live at home and be at least 18 years of age, able to read and write, and willing to participate. Patients with an acute illness, those who were hospitalized, and those who reported psychological or cognitive disorders or physical limitations for self-care were excluded. Measurements Overall, 3 instruments were used: the Multidimensional Scale of Perceived Social Support (MSPSS), Hamilton Anxiety Rating Scale (HAM-A), and Exercise of Self-Care Agency Scale (ESCA). MSPSS: Perceived levels of social support were measured using the MSPSS. 20 The scale consists of 12 items, with 4 items assessing each source of perceived social support, generating the 3 subscales of Family, Friends, and Significant Other. A higher score reflected a higher level of perceived social support for that item. Scores for each of the 3 subscales were summated to ascertain a total perceived support score from each of the 3 sources. The Turkish version of the MSPSS was used in this study. 21 An alpha (a) coefficient of 0.94 in community and patient samples has been reported. The testretest reliability of the scale has been shown to be high (0.85), and concurrent validity and criterion validity have also been documented. 21 Internal consistency reliability of the measure was 0.90 (a) in this study. HAM-A: This rating scale was developed to quantify the severity of anxiety symptomatology, and is often used in psychotropic drug evaluation. It consists of 14 items, each defined by a series of symptoms. Each item is rated on a 5-point scale, ranging from 0 (not present) to 4 (severe). 22 The Turkish version of the HAM- A 23 is an itemized questionnaire providing information about cognitive and somatic symptoms of anxiety. The consistency (Cronbach s a) of the HAM-A is A maximum score of 56 indicates a high degree of anxiety. Internal consistency reliability of the satisfaction measure was 0.88 (a) in this study. ESCA: Self-care was measured by the ESCA Scale. The ESCA Scale was determined by Kearney and Fleischer, and it consists of 4 subscales that contribute to a person s exercise of self-care agency: (a) an active versus passive response to situations, (b) the person s motivations, (c) the knowledge base of the person, and (d) the individual s sense of self-worth. 24 The scale has 43 items rated on a 5-point Likert scale ranging from 0 (very much like me) to 4 (not at all like me). Because 11 of the items are worded negatively, a reverse-scoring 130 method was assigned to the responses. The responses of the 4 subscales were summed to obtain a total ESCA score. A maximum score of 140 indicates a high degree of exercise of self-care. Reliability and validity of the ESCA Scale for Turkish populations were determined by Nahcivan. 25 The evidence for psychometric properties of the ESCA has been documented. The results show that the Turkish version of the ESCA was linguistically equal to the English form. Test-retest correlations were acceptably high (r ¼ ). Internal consistency of the total scale of the ESCA was adequate, with an a coefficient of 0.89 for the Turkish version and 0.88 for the English version. Further research in the development of this translated form would need to demonstrate its applicability and generalizability to monolingual Turkish populations. 25 Internal consistency reliability of the satisfaction measure was 0.88 (a) in this study. Data Analysis Data analysis was conducted with SPSS (Statistical Package for the Social Sciences) Version Means and standard deviations were calculated for all continuous variables, while frequencies and percentages were computed for the categorical variables. Stepwise regression analysis was used to identify factors significantly related to ESCA. Prior to the analysis, categorical variables were dummy coded to meet the assumption of correlational procedure. Prior to computing the regres- 2 DIALYSIS & TRANSPLANTATION MARCH 2006

3 sion, the zero-order correlation of all 8 variables and ESCA was reviewed. Depending on the level of measurement, Pearson product-moment, Spearmann rank-order, and point biserial correlations were used. Of the 8 variables examined, only time on dialysis was significantly related to self-care (r ¼ 0.23, p < 0.01). Time on dialysis was entered first and served as a covariate to control the influence of time on dialysis on self-care. Regression diagnostics were performed to ensure that relevant statistical assumptions were met. The stepwise criteria of probability of F to remove were set at 0.05 and 0.1, respectively. Only variables that enhanced the degree of explanation and were statistically significant were included in the final model. A level of p < 0.5 was set a priori for statistical significance. Cohen s power analysis was computed using correlational data reported in the study (r ¼ 0.58, large effect size) to determine adequacy of the power for the study. With a sample size of 140, at a 0.05 level of significance, a power of 1.00 was determined for this study. Limitations Although participants in the study were not randomly selected, statistical control was implemented to limit the effects of demographic and disease variables on self-care. In addition, the sample was drawn from 4 dialysis centers in Sivas, Turkey. The generalizability of the finding to other samples of dialysis patients in other geographical areas cannot be guaranteed. Results Descriptive Statistics The descriptive statistics for the study variables are presented in Table I. In Table II, the distributions show that the majority of participants scored considerably above the midpoint for all 3 sources of social support, with social support from friends reported to be slightly lower than either significant other or family. Significant-other social support displayed a monotonic increasing distribution. As a result, these variables were omitted from further investigation, and only total perceived social support was used for subsequent parametric statistical analysis. Patients reported moderate levels of social support, low self-care, and moderate levels of anxiety. The mean rating for the social support ( ) demonstrated that the patients were only somewhat satisfied with their life. The item mean rating for self-care ( ) indicated that they were moderately confident of being able to perform self-care behaviors related to undergoing hemodialysis. The mean scores for the anxiety was a moderate ) Bivariate Correlational Analysis The intercorrelations among the variables of the responses to the first study question are presented in. The bivariate relationships were all linear. All variables were highly significantly correlated with each other (p < 0.001). Social support is negatively correlated with anxiety (r ¼ 0.62, p < 0.001), while selfcare was significantly negatively correlated with anxiety (r ¼ 0.58, p < 0.001) and positively correlated with social support (r ¼ 0.67, p < 0.001). The results indicate that patients who perceived higher levels of social support and lower levels of anxiety were more likely to have a higher level of self-care agency. Table I. Sociodemographic and clinical characteristics of the study patients (n ¼ 140). Characteristics age (yr) gender (f, m) 65, 75 marital status: married 120 (85.7%) single 20 (14.3%) education level: no formal education 61 (43.6%) primary 52 (37.1%) secondary 23 (16.4%) tertiary 4 (2.9%) employment status: employed 30 (21.4%) unemployed 110 (78.6%) annual income: < 3,000 ($US) 114 (81.4%) > 3,000 ($US) 26 (18.6%) time on dialysis (yr) dialysis frequency (weekly): 2 sessions 15 (10.7%) > 2 sessions 125 (89.3%) N MARCH 2006 DIALYSIS & TRANSPLANTATION 3

4 The outcome of the self-care may be influenced by demographic and disease-related variables. Eight demographic and disease-related variables were considered as potential covariates to control for extraneous variation. Variables that are highly correlated with self-care and minimally correlated with each other were used as covariates in the regression analyses. Prior to the analysis, categorical variables were dummy coded to meet the assumption of correlational procedure. Of the 8 variables examined, only time on dialysis was significantly related to self-care (r ¼ 0.23, p < 0.01). Time on dialysis was entered first and served as a covariate to control the influence of time on dialysis on self-care. Demographic factors, such as gender and income, and clinical factors, such as hemoglobin, comorbidity, number of medications taken, and of previous hospitalizations were found to be unrelated to ESCA. Table II. Test scores. Variable Mean SD Range Multidimensional Scale of Perceived Social Support family support friend support significant other total social support Hamilton Anxiety Rating Scale Excercise of Self-Care Agency Scale Multivariate Regression Analysis In the multivariate analysis, the 8 variables (age, marital status, employment status, educational level, time on dialysis, dialysis frequency, perceived social support, and anxiety) that were significantly (p 0.01) related to ESCA were entered into the model in a stepwise fashion. Three variables, including time on dialysis, perceived social support, and anxiety demonstrated significant association with ESCA (Table III). The findings indicate that social support and anxiety were the significant predictors of self-care agency for the effect of time on dialysis. Time on dialysis was the first variable to be entered into the model. Perceived social support explained 49% of the variance in selfcare (b ¼ 0.53, p < 0.001), and anxiety (b ¼ 0.28, p < 0.001) explained an additional 5.5% of variance in self-care. These 2 variables explained 56.7% of the variance in self-care. Standardized regression coefficient indicated that greater social support and lower anxiety level were associated with higher self-care. Discussion Self-Care and Hemodialysis Orem s self-care theory can be useful for healthcare providers in assisting patients estimate their self-care ability. Although self-care expectations account for a major portion of outcomes in illness, 26 little research has addressed the self-care ability in patients undergoing HD. The present study determined the relationship of perceived social support, anxiety, and self-care in chronic dialysis patients. Subjects in this study scored a mean of on the ESCA, indicating a low level of self-care. It is in agreement with a recent study that reported the significance of the psychosocial functioning of the patients and the role it plays in the enhanced self-care. 27 Self-care is a major health outcome for patients with ESRD, and this study reported significant low levels. The authors suggest that use of the concept of adequate self-care would enlarge the scope of the disease management of HD and CAPD patients. 17,28 Increased self-care is associated with increased adherence to treatment, behaviors perceived as promoting health, and decreased physical and psychological symptoms. 29,30 They highlight the importance of close attention to self-care in Table III. Summary of stepwise regression analysis for variables predicting the self-care agency (using the Exercise of Self-Care Agency Scale). Step Predictor R2 DR2 Adjusted R2 F Final b 1 time on dialysis * 0.028* 6.74* 0.218* 3 social support { { { { 2 anxiety { { { { *p < 0.01 { p < DIALYSIS & TRANSPLANTATION MARCH 2006

5 ESRD patients, and the need for improvement. Healthcare providers need to continue to gather information on what self-care deficits exist in these relapse-prone individuals. Further research should systematically investigate self-care activities and their contribution to outcomes in this patient population. Social Support and HD For the chronically ill patients, illness can entail a loss of social context, depleted support resources, and estrangement from a social network. Conley et al. reported that major sources of support for dialysis patients are family members, health professionals, friends, and neighbors. 31 Their participants perceived a moderate level of social support; the majority of participants scored considerably above the midpoint for all 3 sources of social support, with social support from friends reported to be slightly lower than either significant other or family. This may suggest that psychological distress also interferes with a patient s interaction with a social network, especially with friends. Significant-other social support displayed a monotonic increasing distribution. The authors suggest that perceived social support improves the psychological wellbeing of the dialysis patient. 31,32 Studies of in-center HD patients reveal that family support and a greater availability and involvement of the spouse were significantly associated with higher morale; family support and the availability of a confidant were associated with fewer rates of illness exacerbation and social functioning difficulties. 18 In contrast, Siegal et al. reported that frequency of contact with friends and relatives increased psychological symptoms, suggesting that frequent contact may be stressful, perhaps due to issues of conflict and reciprocity. 33 The results of this study indicated that perceived social support positively related to self-care ability. Such differences might be related to the influence of cultural factors on a participants perceptions of health and illness, interpretations of symptoms, and their conceptualization of hemodialysis. When nephrology professionals provide informational support to dialysis patients, they should include friends and partners, who can reinforce healthy behaviors and self-care. Health assessments should include an evaluation of the patient s support network to assess whether adequate support exists. Clearly, nephrology professionals can mobilize and enhance the support available to those undergoing HD through comprehensive assessment and appropriate intervention. Anxiety and Hemodialysis It is well known that ESRD patients suffer serious psychological distress due to their renal insufficiency. 34,35 A number of reports about psychological stress and anxiety in ESRD have been published and have shown that patients with ESRD experience a moderate level of anxiety. 19,36,37 Previous researchers have identified severe medical illness, hospital admission, and impaired functional status as significant factors associated with anxiety and depression in dialysis patients. 9,10 Hopefully, these findings will translate into a more accurate view of public healthcare policy for patients receiving HD. Further, the serious mental consequences of these patients are worthy of further research and expenditures. ESRD has a great impact on patients who require major lifestyle changes and must use a range of strategies to manage their chronic illness. 38 Nephrology professionals have an important role in teaching patients effective ways of coping. Consequently, it may be useful to center their work on supporting existing coping strategies or helping patients develop new strategies. Relationship Between Perceived Social Support, Anxiety, and Self-Care A patient s psychosocial functioning has a significant effect on self-care. This may reflect the unfavorable social environment our patients encounter that could produce high levels of anxiety, depression, and social dissatisfaction. The findings of this study indicate that perceived social support and anxiety were the significant predictors of self-care controlling for the effect of time on dialysis. Perceived social support explained 47.5% of the variance (b ¼ 0.52, p < 0.001) and coping (b ¼ 0.29, p < 0.001) explained an additional 5.5% after controlling for time on dialysis. These variables explained a total of 57.3% of the variance in self-care; thus, the research hypotheses were supported by the results. Studies of chronically ill patients have shown that social support has different effects. Social support enhances psychological adjustment, 39 decreases depression, anxiety, and illness demands, and increases quality of life. 10 In this study, a significant correlation was found between social support and anxiety, indicating that the higher the level of social support, the lower the patient s anxiety score. The present study indicates that perceived social support positively relates to self-care ability. This finding is supported by previous studies. There is evidence that social support and self-care ability are positively related, 40 although the specific mechanisms of this relationship are not well understood. Orem postulated that social support enhances the motivation to engage in self-care behavior. 14 A significant relationship between social support and self-care ability was reported for younger patients, indicating that the higher the social support level, the higher the self-care score obtained. 41 The results of this study indicate that patients who perceived higher MARCH 2006 DIALYSIS & TRANSPLANTATION 5

6 levels of social support and lower levels of anxiety were more likely to have a higher level of self-care ability, which is in agreement with a previous study. 42 Together, social support and anxiety have a major impact on the outcomes of self-care. When the relationships between quality of life and anxiety in patients receiving HD were explored, the research revealed that quality of life was significantly negatively correlated with depression and anxiety. 10,42 Similarly, Mapes found that psychological distress explained 21% of the variance in quality of life in the dialysis population. 43 Lev and Owen found a positive relationship between self-care, self-efficacy, and quality of life and a negative correlation between self-care, selfefficacy, and negative moods in HD patients. 13 The findings from this study suggest that assessment of the self-care and psychological status of patients receiving hemodialysis should be an essential part of a nephrology professional s care. Clinicians may need to provide self-care and selfefficacy training to improve patients confidence in performing self-care behaviors, leading to decreased levels of anxiety and consequent improvement in their self care. A self-efficacy training program may also need to include coping training to improve patients confidence to carry out self-care behaviors. This study provides the foundation for the conduct of future studies of self-care self-efficacy training for managing chronic dialysis patients. Clinically, these findings suggest the need for close attention to the social support and anxiety in ESRD patients experiencing low self-care, and the importance of optimizing. This research can contribute to the planning of strategies to enhance social support, self-care ability, and, ultimately, the well-being of this vulnerable population. References 1. Devins GM, Mandin H, Hons RB, Burgess ED, Klassen J, Taub K, et al. Illness intrusiveness and quality of life in endstage renal disease: Comparison and stability across treatment modalities. Health Psychol 1990;9: Kimmel PL. Psychosocial factors in adult end-stage renal disease patients: correlates and outcomes. Am J Kid Dis. 2000; 35(Suppl 1): SchüsslerG Coping strategies and individual meanings of illness. Soc Sci Med 1992;34: Woods N, Yates BC, Primono J. Supporting families during chronic illness. Image J Nurs Sch 1989;21: Weiss RS. The provisions of social relationships. In: Rubin Z, ed. Doing Unto Others: Joining, Modeling, Conforming, Helping, Loving. Englewood Cliffs, NJ: Prentice Hall; 1974: Fink SV. The influence of family resources and family demands on the strains and well-being of caregiving families. Nurs Res 1995;44: Friedman MM, King KB. The relationship of emotional and tangible support to psychological well-being among older women with heart failure. Res Nurs Health 1994;17: Graydon JE, Ross E. Influence of symptoms, lung function, mood, and social support on level of functioning of patients with COPD. Res Nurs Health 1995;18: Gudex CM. Health-related quality of life in endstage renal failure. Qual Life Res 1995;4: Killingworth A, Akker OVD. The quality of life of renal dialysis patients: Trying to find the missing measurement. Int J Nurs Stud 1996;33: Kaplan RC, Toshima T. The functional effects of social relationships on chronic illness and disability. In: Sarason BR, Sarason IG, Pierce G, eds. Social Support: An Intersectional View. New York, NY: John Wiley; 1990: Dunkel-Schetter C, Wortman CB. The role of social support in adaptation and recovery from physical illness. In: Cohen S, Syme SL, eds. Social Support and Health Orlando, Fla: Acadian Press; 1985: Lev L, Owen SV. A measurement of selfcare self-efficacy. Res Nurs Health 1996; 19: Orem DE. Nursing: Concepts of Practice. 5th ed. St. Louis, Mo: Mosby; Denyes MJ. 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Soc Psychiatry Psychiatr Epidemiol 1995;30: Guy W. 048 HAMA Hamilton Anxiety Scale, ECDEU Assessment Manual, U.S. Department of Health and Human Services, Public Health Service Alcohol, Drug Abuse, and Mental Health Administration, Rev. 1976: Yazıcı MK, Demir B, Tanrıverdi N, Karaağaoğlu E, Yolaç P. Hamilton anksiyete seğerlendirme ölçeği: Değerlendiriciler arası güvenirlik ve geçerlik Çalışması [in Turkish]. Turk Psikiyatri Derg 1998;9: Kearney B, Fleischer B. Development of an instrument to measure self-care agency. Res Nurs Health 1979;2: Nahçıvan NO. A Turkish language equivalence of the exercise of self-care agency scale. West J Nurs Res 2004;26: Lakin JA. Self-care, health locus of control, and health value among faculty women. Public Health Nurs 1988;5: Lantz JM, Fullerton J, Quayhagen MP. Perceptual and enactment measurement of self-care. Adv Prac Nurs Q 1995;1: Dodd MJ, Dibble SL. Predictors of selfcare: A test of Orem s model. 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7 spouses on home dialysis. International J Family Psychiatry 1981;2: Burton H J, Kline SA, Lindsay RM, Heidenheim P. The role of support in influencing outcome of end-stage renal disease. Gen Hosp Psychiatry 1988;10: Siegal BR, Calsyn RJ, Cuddihee RM. The relationship of social support to psychological adjustment in end-stage renal disease patients. J Chronic Dis 1987;40: Shidler NR, Peterson RA, Kimmel PL. Quality of life and psychosocial relationships in patients with chronic renal insufficiency. Am J Kidney Dis 1998;32: Piccoli GB, Mezza E, Anania P, Iadarola AM, Vischi M, Torazza MC, et al. Patients on renal replacement therapy for 20 or more years: a clinical profile. Nephrol Dial Transplant 2002;17: Schonfeld WH, Verboncoeur CJ, Fifer SK, Lipschutz RC, Lubeck DP, Buesching DP. The functioning and well-being of patients with unrecognized anxiety disorders and major depressive disorder. J Affect Disord 1997;43: Parkerson GR, Gutman RA. Perceived mental health and disablement of primary care and end-stage renal disease patients. Int J Psychiatry Med 1997;27: Lev EL, Owen SV. A prospective study of adjustment to hemodialysis. ANNA J 1998;25: Primono J, Yates BC, Woods NF. Social support for women during chronic illness: The relationship among sources and types to adjustment. Res Nurs Health 1990;13: Jirovec MM, Kasno J. Self-care agency as a function of patient-environmental factors among nursing home residents. Res Nurs Health 1990;13: Mapanga KG, Andrews CM. The influence of family and friends basic conditioning factors and self-care agency on unmarried teenage primiparas engagement in contraceptive practice. J Community Health Nurs 1995;12: Steele TE, Baltimore D, Finkelstein SH, Juergensen P, Kliger AS, Findelstein RO. Quality of life in peritoneal dialysis patients. J Nerv Ment Dis 1996;184: Mapes DL. Self-management compliance and quality of life in chronic hemodialysis patients [dissertation]. San Francisco, Calif: University of California, San Francisco; MARCH 2006 DIALYSIS & TRANSPLANTATION 7

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