The Journal Of Nephrology Social Work - Volume 23, May 2004

Volume 23, May 2004

Table of Contents

Fostering Childhood Participation in Health Care: Grandparents' Perspectives on Children's Involvement in the Treatment of Pediatric End Stage Renal Disease.
D.B. Nicholas, PhD, RSW; Donna Keller, PhD (cand.); G. Picone, MSW, RSW

Reluctance Towards Transplantation: Factors Influencing Patient Attitudes Towards Organ Transplantation.
Harold W. Wiebe, LMSW
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Psychosocial Factors in Treating the Depressed Renal Patient.
Anthony Mazella
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Establishing Evidence-Based Renal Social Work Practice Guidelines.
Stephen Giles, MSW
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Improving Communication in Patient-Provider Relations.
Rick Russo, MSW, CSW
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Transportation Issues and Their Impact Upon In-Center Hemodialysis.
Stephen A. Iacono
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The Role of Social Networks: A Novel Hypothesis to Explain the Phenomenon of Racial Disparity in Kidney Transplantation.
Teri Arthur, MSW, CSW, LSW

Fatigue Among Caregivers of Chronic Renal Failure Patients: A Principal Components Analysis.
Robert A. Schneider, PhD, LISW


Abstracts From Original Articles

Fostering Childhood Participation in Health Care: Grandparents' Perspectives on Children's Involvement in the Treatment of Pediatric End Stage Renal Disease
D.B. Nicholas, PhD, RSW; Donna Koller PhD (cand.); G. Picone, MSW, RSW, The Hospital for Sick Children, Toronto, Ontario, CANADA

This is an intergenerational, family-based ethnographic study in which grandparents of children with End Stage Renal Disease (ESRD) identified perspectives about child participation in pediatric health care. Grandparents advocated active child participation in ESRD care and conveyed participation-promoting methods including: (1) open communication among child, family, and health care providers, (2) developmentally-appropriate information about the illness conveyed to the child, (3) child involvement in the daily care regimen, and (4) an attempt to limit the negative impact of the illness and condition on children's everyday activities and overall quality of life. Participating grandparents asserted that active, ongoing and collaborative effort on the part of families, health care providers and the ill child fosters benefits of child participation.

Reluctance Towards Transplantation: Factors Influencing Patient Attitudes Towards Organ Transplantation
Harold W. Wiebe, LMSW, Wichita State University, Wichita, KS

Gaining access to kidney transplantation is a process that involves treatment decisions made by patients. Despite high success rates and multiple advantages of kidney transplantation, some patients choose to remain on dialysis for treatment. The present study will identify a range of sociocultural factors and personality characteristics that influence this decision-making process. Twenty transplant candidates, representing three subgroups (those answering "yes," "no," or "undecided" to the question of transplantation) completed a quantitative survey, supplemented by a qualitative interview, using both specific and open-ended questions. Standardized personality scales were used to compare personality characteristics between the groups. This study explored the complexity of the decision-making process and hypothesized that high levels of education, economic status, self-esteem, risk-taking tendencies, and optimism are positive predictors, while high levels of perfectionism, loneliness, shyness, and low self esteem are negative predictors of choosing transplantation. Due to the small sample size, significant results were not obtained but important trends were noted. While higher levels of education, self-esteem, decisiveness, and support corresponded with positive choices for transplantation, optimism and tendencies toward risk-taking did not. Strong correlation was noted between personality characteristics and decision-making skills. The implications for social work are discussed.
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Psychosocial Factors in Treating the Depressed Renal Patient
Anthony Mazzella, Institute For Psychoanalytic Training and Research, New York, NY

This paper will emphasize a preliminary approach to assessing, diagnosing and treating the depressed dialysis patient. The renal literature on depression has proven that depression is highly prevalent amongst dialysis patients and it has linked depression with mortality, treatment non-compliance and overall patient adjustment. Numerous studies have made it clear that the best way to address depression in this population is not yet clear. The renal literature on therapeutic treatment is sparse, the idea of what exactly coping and adapting entails is highly ambiguous, and a general understanding of the etiological factors underlying depression is relatively absent. This introductory theoretical paper will focus on the two psychosocial factors (internal and interpersonal dynamics) that are believed to have a strong influence on how the patient copes and adapts to his or her renal diagnosis. The etiological factors associated with the renal population will be explored and clinical material will demonstrate the role of self-esteem in depression.
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Establishing Evidence-Based Renal Social Work Practice Guidelines
Stephen Giles, MSW, Renal Social Work, Toronto General Hospital, CANADA

The purpose of the Renal Management Clinic (RMC) is to manage the initiation of treatment for people with end renal disease in a timely manner. For social work, this means completing a compensative psychosocial assessment and developing a plan to assist the patients with adjusting to requirement of renal replacement therapy before they are admitted to the hospital for dialysis or transplantation. Practically, this means each patient who came through the RMC would have been assessed by the RMC social worker. The system implemented and practiced by the RMC social worker to ensure that all RMC patients were assessed before they initiated treatment was well thought out; however, there was no evidence, beyond the anecdotal kind, that it was working. Consequently, this research study was conducted in order to review the current renal social work practice guidelines target, which states that every renal management clinic patient will receive a social work assessment. This study found convincing evidence that the system implemented to achieve this goal is effective and should be maintained. Additionally this study demonstrates how a systemic review of practice procedures can provide solid evidence to back up practice. Basically it has reaffirmed what was already suspected, with the only difference being that there is now quantitative data to back it up. This gives social work the confidence to say what works with out having to rely on saying, "trust me."
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Improving Communication in Patient-Provider Relations
Rick Russo, MSW, CSW, ESRD Network of New York, Inc.

Due to an increased lack of well-trained professional staff in dialysis units, cultural shifts in attitudes, and job-related stressors, the need for organizations like the ESRD Networks to provide appropriate staff-patient interaction training has become apparent to many in the industry. This was brought to light in the state of New York through a patient feedback mechanism called the Patient Advisory Committee. Often, the us/them mentality that can develop in dialysis units between patient and staff influences the culture of the unit to the point where any exchange between patient and staff is adversarial at best. An in-service program was developed and presented at dialysis units that requested the training. Evaluations show positive response from participants and an improved clinician's perspective of the patient experience. The training attempts to remedy with staff their perception of patient behavior enabling them to provide increased non-aggressive or non-defensive responses.
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Transportation Issues and Their Impact Upon In-Center Hemodialysis
Steven A. Iacono, FMCNA Midtown Dialysis Center, Columbia, South Carolina

Reliable and consistent transportation is vital to patients receiving in-center hemodialysis. This is not only a matter of quantity, but also of quality. Two questionnaires, one for patients and one for dialysis social workers, were developed in order to assess the presence and types of transportation problems. Data was collected from 123 randomly selected patients and 16 social workers. Two-thirds of the patients reported having been picked up late by their transport provider and the average waiting time was one hour and two minutes. Only 5% of patients stated that their provider had ever informed them of how to file a complaint about their service, and only 45% reported that the matter was corrected when they did complain. The primary identified problems included difficulty scheduling trips, conflicts with drivers, late service and failure to be picked up. Social workers noted that 4.5 treatments are missed on average each month at their clinics due to transportation. Missed treatments represent a risk to the health of patients, cause complications with clinic scheduling and are a loss of income for dialysis corporations.
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The Role of Social Networks: A Novel Hypothesis to Explain the Phenomenon of Racial Disparity in Kidney Transplantation
Teri Arthur, MSW, CSW, LSW

Compared with dialysis therapy, it has been shown that kidney transplantation provides patients with end-stage renal disease (ESRD) improved physical and mental health, and is more cost-effective. However, rates of transplantation referrals are not consistent among ethnic groups of patients with ESRD. African Americans are much less likely than white patients with ESRD to be referred for a renal transplant, placed on a waiting list for a kidney, or receive a kidney transplant.

Fatigue Among Caregivers of Chronic Renal Failure Patients: A Principal Components Analysis
Robert A. Schneider, PhD, LISW, Associate Professor of Social Work, University of Northern Iowa, Editor, Journal of Nephrology Social Work

Quality of life for caregivers of ESRD patients has not been well addressed. The physical and psychological status of this overlooked group can be important in the recovery or adaptation of patients with chronic renal failure. One particular symptom of a reduced quality of life of such caregivers is that of fatigue. The study tested the reliability of both existing and newer fatigue measures. Measures with high reliability yielded a single construct of fatigue in a principal components analysis in this study of 99 caregivers. Implications for practice are addressed. Potential for further study is recommended.