Providers and Families Weigh in on Delays to Pediatric Kidney Transplant Wait-List Activation

Introduction Timely access to kidney transplant is essential to reducing mortality of children with kidney disease. We examined factors affecting providers’ decisions to delay waitlisting, compared perceptions of important factors of providers to families, when delaying activation, and describe recommendations to improve support for pediatric patients and families to overcome waitlisting delays. Methods Using a mixed-methods design, 20 providers and 20 families of pediatric patients with kidney disease, participated in interviews and surveys. Interviews were analyzed using thematic analysis. Surveys were analyzed with descriptive statistics. Results Avoiding retransplantation, treatment nonadherence, poor psychological readiness for transplant, poor physical health, and greater need for social support were the key themes affecting providers’ decisions to delay waitlisting. At least 70% of both providers and families felt that waitlisting should be delayed until patients and families had reliable access to transportation, mental health support, and caregivers who can better understand medical information. At least 70% of families surveyed felt it was important to delay waitlisting until they had regulated blood pressure and well-managed labs. Ethical concerns emerge that waitlisting practices may contribute to disparities in access to transplant. Conclusion Providers and families agree that stabilizing the family situation and improving adherence to treatment are important reasons to delay waitlisting. However, pediatric patients facing greater disparities need easier access to psychological services, strengthened social support, access to economic resources, and stronger relationships with coordinators. Addressing patient burdens is essential for reaching more equitable listing practices.

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Psychological Aspects and Adjusment of Pediatric Patients with Chronic Renal Disease

European Journal of Social Sciences Education and Research ◽

10.26417/ejser.v5i1.p98-105 ◽

2015 ◽

Vol 5 (1) ◽

pp. 98

Author(s):

Jeta Ajasllari

Keyword(s):

Chronic Kidney Disease ◽

Kidney Disease ◽

Social Relations ◽

Pediatric Patients ◽

Chronic Renal Disease ◽

Physical Growth ◽

Professional Literature ◽

Psychological Reactions ◽

Factors Affecting ◽

Long Time

There is an ever increasing number of studies on the experience of pediatric patients suffering with Chronic Kidney Disease (CKD) resulting in the conclusion that chronic kidney disease affects the development of these patients, their behavior, emotions and social relations, causing a series of psychological reactions. The aim of this study was to make a review of the existing literature on psychological experience of patients with chronic kidney disease and their adjustement. The study findings are in the context of previous research and existing theories. Research was made in professional literature related to Chronic Kidney Disease in children and adolescents, selecting works published betwen years 1981 and 2014, using key terms such as children, adolescent, chronic kidney disease, in different combinations. Children starting from school age and later in their adolescence are in constant change, not only as regards their physical growth but also their emotional and sexual growth and coexistance for a long time with such a problem as kidney disease is very difficult and affects their lives in many ways. Simultaneously, CKD causes grave psychological damages. Survival to the disease is not satisfactory so deepening on desease perception, social and psychological factors affecting patients, are very important elements to improve the quality of life of these patients. Comprehension of their experiences is very important in order to decrease the effect of CKD on their lives and for them to receive the most effective treatment. Nephrologists andpsychologist can work together by helping make the connections between psychosocial and biological factors.

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Losing Weight; The Experience of Patients With End Stage Kidney Disease: A Qualitative Study

10.21203/rs.3.rs-141130/v1 ◽

2021 ◽

Author(s):

Johanne Freeman ◽

Hanne Konradsen ◽

Kristine Lindhard ◽

Ditte Hansen

Keyword(s):

Weight Loss ◽

Kidney Disease ◽

Kidney Transplant ◽

Graft Loss ◽

Phenomenological Approach ◽

Structured Interviews ◽

End Stage Kidney Disease ◽

Factors Affecting ◽

Sustainable Diet ◽

End Stage

Abstract Background: Patients with end-stage kidney disease need renal replacement therapy to ensure survival. Kidney transplant is superior to dialysis due to better survival. Patients with obesity cannot be approved for kidney transplant until they lose sufficient weight. Obesity may complicate the surgical procedure, and the risk of graft loss increases with increasing body mass index. Attaining appropriate weight loss is often a hindrance for transplantation for the patient with obesity, and further knowledge of minds, thoughts and attitudes are necessary to better help these patients to lose weight.Methods: Semi-structured interviews with patients who needed to lose weight to be approved to the kidney transplant list at a Danish hospital, were recorded and transcribed. From patients’ responses, we identified descriptive categories using a phenomenological approach. Factors affecting outcomes were derived reflexively from these categories.Results: Ten interviews were analyzed. Experiences of obesity and weight-loss attempts were described across 4 categories; (i) Restrictions and exhaustion, (ii) Hope and hopelessness, (iii) Support and self-discipline, and (iv) Motivation based on severity.Conclusions: Patients with obesity that hinders kidney transplantation need additional help with the dietary restrictions that follow a kidney disease. They need bridging between a kidney-friendly diet and a sustainable diet that will ensure weight-loss. These patients also express how they do not want to be alone in their weight-loss battle. They are looking for help, camaraderie and support to obtain weight-loss.

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Continuous use of intermittent bladder catheterization - can social support contribute?

Revista Latino-Americana de Enfermagem ◽

10.1590/0104-1169.3268.2438 ◽

2014 ◽

Vol 22 (3) ◽

pp. 461-466 ◽

Cited By ~ 8

Author(s):

Marjoyre Anne Lindozo Lopes ◽

Elenice Dias Ribeiro de Paula Lima

Keyword(s):

Social Support ◽

Spinal Cord ◽

Intermittent Catheterization ◽

Factors Affecting ◽

Neuropathic Bladder ◽

Urologic Complications ◽

The Family ◽

Great Support ◽

Almost All ◽

Continuous Use

OBJECTIVE: to investigate the factors affecting the adequate continuous use of intermittent catheterization and its relation with social support.METHOD: sectional, descriptive and correlational study involving 49 patients with neuropathic bladder caused by spinal cord injury.RESULTS: almost all (92%) participants continued the intermittent catheterization, but 46.9% made some changes in the technique. The complications (28.6% of the sample) were mainly infection and vesicolithiasis. There were high scores for social support in relation to people that were part of the patient's social support.CONCLUSION: All of them noticed great support from the family, but not from the society in general. The difficulties were related to the lack of equipment and inadequate infrastructure, leading to changes that increased urologic complications.

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The Factors Affecting Family Still Doing Defecation in the River in Blitar

Jurnal Ners dan Kebidanan (Journal of Ners and Midwifery) ◽

10.26699/jnk.v3i3.art.p236-241 ◽

2016 ◽

Vol 3 (3) ◽

pp. 236-241

Author(s):

Heni Novikasari

Keyword(s):

Social Support ◽

Health Workers ◽

Sampling Technique ◽

Total Sample ◽

Factors Affecting ◽

The Family ◽

Questionnaire Result ◽

Level Of Knowledge ◽

Quota Sampling ◽

Support Methods

Factors affecting the family still doing defecation in rivers such as the factors of knowledge,customs, infrastructure, and social support. Methods: The research design was descriptive. The populationin this study was the family who still do defecate in the river in the city of Blitar as many as 511families. Total sample was 102 families taken with quota sampling technique. The research instrumentwas in the form of a questionnaire. Result: showed 51% (52 families) had a good level of knowledge.67.6% (68 families) had a habit less. 94.1% (96 families) with less infrastructure. 87.3% (89 families)said that social support from health workers and government in good category. It was caused by the badhabits of the family. Suggestions for health employees to continue to provide counseling that aimed tochange the behavior of families and for community leaders provided infrastructure facilities around thefamily environment which still doing defecation in the river.

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HUBUNGAN ANTARA DUKUNGAN SOSIAL DAN PENERIMAAN DIRI PADA PASIEN DENGAN PENYAKIT GINJAL KRONIS

Jurnal Skolastik Keperawatan ◽

10.35974/jsk.v5i1.776 ◽

2019 ◽

Vol 5 (1) ◽

pp. 85-94

Author(s):

Rosnancy Sinaga ◽

Ariyanti Yolanda Bakara

Keyword(s):

Social Support ◽

Chronic Kidney Disease ◽

Kidney Disease ◽

Strong Relationship ◽

Rank Test ◽

Correlational Research ◽

The Social ◽

The Family ◽

Self Acceptance ◽

The Relationship

Patients diagnosed with chronic kidney disease who undergo hemodialysis therapy often feel discouraged, lack of self-acceptance and feeling not useful for the family and the surrounding environment. Furthermore, patients who undergo hemodialysis often feel depression of the disease. The purpose of this study was to explore the relationship between the social support and selfacceptance in patients with chronic kidney disease. This study utilized a descriptive correlational research design to describe the relationship. Before the data collection, the researchers secured an administrative clearance from the hospital. The samples were 30 patients with chronic kidney disease and undergo hemodialysis therapy in the hospital. Two sets of questionnaires were disseminated, and responses were treated analyzed using descriptive statistics to describe the demographic profile, while Spearman Rank test was used to measure the relationship between social support and self-acceptance in patients with chronic kidney disease. Using valid questionnaires, the patients rated their level of social support as good (82.08%). Participants agreed that the level of self-acceptance was good (71.42%). The findings indicate that social support was correlated with self-acceptance in patients with chronic kidney disease (r=0.850, pË‚0.00). The study concludes that there was strong relationship between social support and selfacceptance in the patients with chronic kidney disease who undergo hemodialysis therapy. Keywords: chronic kidney disease, social support, self-acceptance

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