Caregiver burden in pediatric dialysis

Wightman, Aaron

doi:10.1007/s00467-019-04332-5

Cited by 39 publications

(12 citation statements)

References 64 publications

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“…In addition to the emotional distress at their child's diagnosis of an irreversible life-limiting disease, caregivers must assume responsibility for medical care. Globally, caregivers of children on dialysis face physical stress without respite, have no time for selfcare and have reported chronic pain, weight gain, hypertension and diabetes (49)(50)(51)(52). Mental illnesses such as depression, anxiety and medical traumatic stress are also prevalent (53,54).…”

Section: Inequity In Dialysis Experience and Outcomesmentioning

confidence: 99%

Addressing the Ethical Challenges of Providing Kidney Failure Care for Children: A Global Stance

Pais

Wightman

2022

Front. Pediatr.

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Children with kidney failure require kidney replacement therapy (KRT), namely maintenance dialysis and kidney transplant. Adequate kidney failure care consists of KRT or conservative treatment with palliative care. In the context of kidney failure, children depend on parents who are their surrogate decision-makers, and the pediatric nephrology team for taking decisions about KRT or conservative care. In this paper, we discuss the ethical challenges that arise relating to such decision-making, from a global perspective, using the framework of pediatric bioethics. While many ethical dilemmas in the care of children with KRT are universal, the most significant ethical dilemma is the inequitable access to KRT in low & middle income countries (LMICs) where rates of morbidity and mortality depend on the family's ability to pay. Children with kidney failure in LMICs have inadequate access to maintenance dialysis, timely kidney transplant and palliative care compared to their counterparts in high income countries. Using case vignettes, we highlight how these disparities place severe burdens on caregivers, resulting in difficult decision-making, and lead to moral distress among pediatric nephrologists. We conclude with key action points to change this status-quo, the most important being advocacy by the global pediatric nephrology community for better access to affordable kidney failure care for children.

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Section: Inequity In Dialysis Experience and Outcomesmentioning

confidence: 99%

Addressing the Ethical Challenges of Providing Kidney Failure Care for Children: A Global Stance

Pais

Wightman

2022

Front. Pediatr.

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“…43 Parents of children with CKD have higher rates of depression and anxiety, poorer HRQoL and increased financial strain; and though these burdens evolve, they do not resolve with transplantation. [44][45][46][47][48][49][50] The challenges experienced by children with CKD and their families require intentional, thoughtful shared decision-making incorporating patient, parent, and clinician. Patients and parents value information sharing with nephrologists and desire to serve as experts in their lived experience, but both parties report feelings of censorship in interactions at times.…”

Section: The Unmet Need For Ppc In Pediatric Nephrologymentioning

confidence: 99%

Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD

House

Wightman

2021

Kidney360

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Despite continued advances in medical treatment, pediatric chronic kidney disease (CKD) remains an unremitting, burdensome condition characterized by decreased quality of life and earlier death.(1-7) These burdens underscore the need for integration of pediatric palliative care (PPC) into nephrology practice. Pediatric palliative care is an evolving field which strives to 1) relieve physical, psychological, social, practical and existential suffering; 2) improve quality of life; 3) facilitate decision-making; and 4) assist with care coordination in children with life-threatening or life-shortening conditions.(8) Integration of palliative care into routine care has already begun for adults with kidney disease and children with other chronic diseases, yet, similar integration has not occurred in pediatric nephrology.(9,10) This review serves to provide a comprehensive definition of PPC, highlight the unmet need in pediatric nephrology and current integration efforts, discuss the state of palliative care in adult nephrology and analogous chronic pediatric disease states, and finally to introduce future opportunities for study.

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“…The impact of being a caregiver involves social isolation and work difficulties ( Wakabayashi and Donato, 2005 ; Knapp et al, 2010 ; Price et al, 2012 ; Collins et al, 2016 ; Harputluoğlu et al, 2021 ). Stress, anxiety and depression are common in parents ( Collins et al, 2016 ; Wightman, 2020 ) and can generate traumatic experiences ( Mitchell et al, 2006 ; Kars et al, 2011 ). Such emotions are present not only in adult caregivers but also in pediatric patients and their siblings ( Barlow and Ellard, 2006 ; Collins et al, 2016 ; Weaver et al, 2019 ).…”

Section: Introductionmentioning

confidence: 99%

The Intervention Areas of the Psychologist in Pediatric Palliative Care: A Retrospective Analysis

et al. 2022

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Infants, children and adolescents with life-limiting and life-threatening disease need long-term care that may change according to disease’s natural history. With the primary goal of quality of life, the psychologist of pediatric palliative care (PPC) network deals with a large variety of issues. Little consideration has been given to the variety of intervention areas of psychology in PPC that concern the whole life span of the patient and family. The PPC network is composed by a multidisciplinary team of palliative care specialists that intervenes at home, in the hospital and in every place where the patient is living. The network coordinates different public health services to respond to clinical, psychosocial and spiritual needs. In these scenarios, the psychological need is not a single event but a moment inserted in the complexity of the child’s needs. This retrospective monocentric project consists of an analysis of characteristics of psychological interventions in our PPC service. The time frame taken into consideration is 2019–2020, analyzing the clinical records of 186 patients of Pediatric Palliative Care and Pain Service of Veneto Region (Italy). The areas that emerged in the analysis show how the intervention of the psychologist in PPC does not concern only end-of-life, but a series of topics that are significant for the family to guarantee psycho-social wellbeing oriented toward the best quality of life. In conclusion, these different topics highlight the complexity of the child and family experience. This variety must be taken into consideration, the psychologist must increase holistic support with a dedicated skills curriculum.

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Caregiver burden in pediatric dialysis

Cited by 39 publications

References 64 publications

Addressing the Ethical Challenges of Providing Kidney Failure Care for Children: A Global Stance

Addressing the Ethical Challenges of Providing Kidney Failure Care for Children: A Global Stance

Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD

The Intervention Areas of the Psychologist in Pediatric Palliative Care: A Retrospective Analysis

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