50  The Spectrum of Patient and Caregiver Experiences

ysis and ensure they have strategies to prepare for
the risks of health complications. Some avoid
social situations or public events because it is
emotionally difficult and they do not want their
health situation to define the family. Some parents
may feel they are no longer able to pursue their
own educational or career goals [32] (Box 50.4).

Caregiver Burden
In prioritizing the health and medical needs of
their child on dialysis, some caregivers struggle
to maintain their own well-being [31]. The ongoing, time-consuming, and highly intense regimen
of dialysis, and having to subsume the multiple
roles of being a parent, caregiver and advocate,
can take a toll on the physical, emotional, and
spiritual health of caregivers [28, 32]  – “It’s a
hard, tiring job because it’s an everyday process…It’s a workout job. It’s a job that you really
have to focus on, put your mind, heart into it. …
It’s a job that you have to give up just about your
everyday life by focusing in on this. … It’s very
hard. It’s tiresome” [32]. Parental accounts of the
specific burdens related to hemodialysis and peritoneal dialysis are provided in Box 50.5.

Financial Burden
Caring for children on dialysis requires resources
to be directed toward meeting their complex
needs. Some parents are unable to sustain
employment, and face difficulties in navigating
the complex processes to access financial assistance [15, 16, 32] (Box 50.6).

Personal Growth
Over time, some parents develop coping strategies to care for themselves, and believe they
gain unique insight and learnings from their
experience to enable them to cope in the longerterm [32]. They may feel they gain a new perspective in appreciating the “little things, and
undertake a more holistic approach to life and
caregiving” [32].

971

Implications for Practice
The insights gained from the experiences and
perspectives of children and adolescents on dialysis, and their caregivers, have implications for
practice, particularly in terms of strengthening
shared decision-making, improving symptom
management, increasing attention to psychosocial needs, providing school and community
advocacy, and supporting the role and responsibilities of caregiving.
There is a need to empower children and adolescents on dialysis to be involved in decision-­
making about their health and treatment – dialysis,
medications, diet and fluid management, surgery,
transplantation. Interventions to support shared
decision-making may include age and developmentally appropriate decision coaching, decision-­
aids, and psycho-educational programs [23, 34,
35]. Providing access to supportive care, which
includes symptom management [36], may help to
alleviate the distressing, severe, and debilitating
symptoms such as fatigue and pain in children on
dialysis. Multidisciplinary care should involve
psychiatrists, psychologists, and social workers,
as children and adolescents on dialysis suffer

unresolved anxiety, guilt, fear, low self-esteem,
stress, and disappointment.
Caregivers also need resources to manage the
uncertainty, anxiety, and fears, as these can
impact their wellbeing and capacity to provide
care for their child [15, 37]. We suggest that clinicians address with caregivers their concerns
about losing control of children on dialysis, and
to establish a clinician-parent partnership
approach in providing care for the child on
­dialysis. Advocacy efforts in school and community settings may promote understanding among
their teachers and peers, which may in turn support motivation and ability in children on dialysis
to engage in school and community activities and
reduce their sense of social isolation. Concerns
about career opportunities also suggest the need
for vocational counselling. Training, education,
and access to support (including practical and
financial support) for caregivers can help to
strengthen their ability to provide care for their
child on dialysis, and respite programs could also
provide some relief for caregivers [16, 31, 37].


A. Tong et al.

972

Conclusion
Dialysis profoundly impacts the lives of children
and caregivers. Children and adolescents on dialysis contend with a sense of being different from
others because dialysis and its related treatment

have severe consequences on their body image
and appearance, wellbeing, and cause them to
feel guilt and a burden on their family. They lose
many aspects of control because of the uncertainties about their deteriorating health and treatment
options, having to depend on their families for
healthcare and daily tasks, the constant need to
do dialysis, debilitating symptoms, and fearing
that dialysis will jeopardize opportunities in the
areas of relationships, family, and career.
Children and adolescents feel constrained and
restricted in their daily living, which they attribute to the dialysis regimen, having to attend
clinical appointments, being hospitalized, being
vulnerable to infections and complications, and
feeling too unwell to participate in activities; and
are frustrated as they cannot attend school and
participate in social activities with their peers. In
terms of managing treatment, some want to take
more ownership over their dialysis and to be
empowered to be involved in decision-making
about their health and treatment. Children and
adolescents struggle to take medications and
adhere to dietary and fluid restrictions because it
conflicts with their goal of being “normal,” interferes with lifestyle, or is unpleasant to take and
they cannot tolerate the side effects.
Despite these challenges, some develop
determination, resilience, and forge meaning in
their circumstances. They refuse to allow dialysis to constrain them and make the effort to
preoccupy themselves with activities. They
also value the emotional and practical support
from their family and friends. Caregivers of

children on dialysis must also cope with uncertainty, loss of control, additional responsibilities in providing ongoing medical care and
advocacy for their child and manage the social
and financial challenges. Addressing these
broader needs is needed to improve the experience of children and adolescents on dialysis,

and their caregivers, for better overall wellbeing and outcomes in this population.
Acknowledgments With permission, we acknowledge
the following caregivers: Diana Austin, Abigail Collett,
Melinda Johnson, and Traci Krist for their generous contributions in sharing their stories.

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Index

A
Acceptable macronutrient distribution ranges
(AMDRs), 469
Access recirculation, 369
Acquired cystic kidney disease (ACKD), 720
Acute hemodialysis, 843–845
Acute kidney injury (AKI)
acute hemodialysis for, 843–845
acute peritoneal dialysis, 842–843
blood tests, 836
challenges, 51, 52
clinical evaluation of, 884–885
classification and etiology, 832–834
history and physical examination, 834–835
community-acquired disease, 884
CRRT
anticoagulation, 850–853
blood flow rate, 848, 849
citrate anticoagulation protocol, 852
complications, 853

hemofilter and blood prime, 847–848
machine and modality, 846–847
nutritional guidelines, 854
prescription, 849
solute clearance, 849, 850
ultrafiltration, 850
vascular access, 845, 846
crush syndrome, 884
definition of, 827–828
dengue hemorrhagic fever, 884
different modalities of dialysis, 890
drug dosing, 855
epidemiology and outcomes of, 828–831
history and physical examination, 834
laboratory evaluation, 885
management
central venous pressure, 886
drug administration, 888–889
drugs to remove fluid, 888
fluid administration, 886, 887
fluid and electrolytes, 886
fluid boluses, 887
fluid overload, 888
nutrition, 887
pharmacologic therapy, 886–887

RRT, 889, 890
therapy of complications, 886
non-exhaustive list of causes, 833
nutritional management for, 853–854

outcomes, 891, 892
pathophysiology of, 831–832
pediatric peritoneal dialysis, 4
primary kidney disease, 884
renal support therapy
CRRT technique, 841
ECMO, 841
electrolyte management, 838
fluid management, 837–838
furosemide stress test, 837
identification of patients, 837
IHD, 840, 841
modality of, 840–842
peritoneal dialysis, 840
pharmacological therapy, 839
renal angina index, 837
timing and modality of, 839–842
RRT, 891
Shiga toxin-associated HUS, 884
urine testing, 836
vascular access for, 845
Acute liver failure (ALF), 895
Acute pancreatitis (AP)
diagnosis, 309
overview, 309
pathogenesis, 309
prognosis, 309, 310
treatment of, 309
Adenosine triphosphate (ATP), 440
Adequate dialysis, 389

Adolescent/young adult (AYA), 77
Adrenaline, 889
Advanced glycosylation end products (AGE), 164, 205
ADVanced Organ Support (ADVOS), 896
Advanced practice providers (APPs)
billing practices, 75, 76
coordination of care, 73
critical care nephrology, 75
evidence-based guidelines, 73
hemodialysis, 73, 74
hospital policy, 73

© Springer Nature Switzerland AG 2021
B. A. Warady et al. (eds.), Pediatric Dialysis, />
975


976
Advanced practice providers (APPs) (cont.)
nurse practitioner, 69–71
orientation for, 71–73
patient outcomes, 77, 78
peritoneal dialysis, 74, 75
physician assistant, 71
transition of care
caregivers, 76
CKD-ESRD, 76, 77
communication skills, 76
health literacy, 76
kidney transplant, 77

quality of life, 76
transition to adult care, 77
Advanced Practice Registered Nurse (APRN), 69–71
Advanced Registered Nurse Practitioner (ARNP), 69
Adverse drug events (ADE), 102
African American ethnicity, 161
Agency for Healthcare Research and Quality (AHRQ),
61, 82
Air embolism (AE), 447–449
Alkalinization, 553
Allergic reactions
contaminants, 446
endotoxin, 445, 446
ethylene oxide, 445
heparin, 445
membrane reactions, 445
treatment, 447
Ambulatory blood pressure monitoring (ABPM), 595
American Association of Critical-Care Nurses, 59
American Association of Physician Assistants
(AAPA), 71
American Nephrology Nurses Association
(ANNA), 58, 70
American Society of Pediatric Nephrology (ASPN), 58
Amino acid dialysate (AAD), 238
Aminoglycosides, 407, 888
Aminophylline, 888
Amyloidosis, 454
AN69 membranes, 445
Anemia, 383, 384, 521

Anemia management
aluminum toxicity, 623
anti-rHuEPO antibodies, 624
B12 deficiency, 616
bone disease secondary to hyperparathyroidism, 623
cardiac function, 615
carnitine deficiency, 616
CERA, 620, 622
copper deficiency, 616
darbepoetin alfa, 619, 620
dosing requirements, 621
erythropoiesis and disordered
mechanisms, 609, 610
erythropoiesis stimulating agents, 621–623
erythropoietin levels, 617
ferric pyrophosphate citrate, 626, 627
hemoglobin levels, 618
hepcidin, 612, 613

Index
hypervolemia, 623
hyporesponsiveness, 623
hypoxia inducible factors, 610, 611
incidence, prevalence, and risk factors, 613, 614
initial laboratory evaluation, 616
intravenous iron supplementation, 625, 626
IPPN registry, 623
iron, 611, 612
iron safety, 626
KDIGO, 613

KDOQI, 613
laboratory assessment of iron status, 617, 618
L-carnitine supplementation, 616
medications, 623
oral iron supplementation, 624
potential causes, 616
quality of life, physical and cognitive function, 615
red blood cell transfusion, 624
rHuEPO, 609, 618, 619
risk of death and hospitalization, 614, 615
symptoms, 616
Angiotensin-converting enzyme inhibitors (ACE-i),
215, 576, 591, 932
Angiotensin type-2 receptor blockers (ARB), 115,
164, 215
Ankle-brachial index (ABI), 160
Anorexia, 490
Antibiotic locks, 410, 411, 416, 425
Antibiotic stewardship
ADE, 102
antimicrobial (see Antimicrobial stewardship)
CDI, 102
in children, 102, 103
in dialysis patients, 103
fungal peritonitis, 102
multidrug-resistant bacterial infections, 101, 102
pediatric peritoneal dialysis, 102
vaccination, 108
Anticoagulant, 440
Anticoagulation, 368, 369

Antimicrobial stewardship programs (ASPs), 103, 104
definition, 103
dialysis units, 105, 106
DOT, 104
elements, 103
hemodialysis, 106, 107
infection prevention, 107, 108
inpatient, 104, 105
outpatient, 105
pathogen identification, 106
patient outcome, 104
peritoneal dialysis, 107
Antineutrophil cytoplasmic antibody
(ANCA), 932, 933, 935
ANZDATA Registry, 750, 755
APEX time, 203, 213
Apparent cause analysis (ACA), 275
Arterial stiffness, 592
Arteriovenous fistula (AVF), 73, 418, 419
monitoring and complications, 330, 331


Index
patient evaluation and preparation, 329, 330
placement and perioperative handling, 329, 330
Arteriovenous graft (AVG), 331, 332, 418, 419
Australia and New Zealand Dialysis and Transplantation
Registry (ANZDATA), 250, 747
Automated peritoneal dialysis (APD), 204, 205,
209, 281

cyclers, 218, 219
prescription
patient adherence, 221
strategies, 221, 222
treatment data
registration of, 219, 220
transmission of, 220
Autosomal recessive polycystic kidney disease
(ARPKD), 250
B
Bacille Calmette Guerin (BCG) vaccine, 642
Backdiffusion, 22
Backfiltration, 366, 367
Balance™, 234
Behavioral Family Systems Therapy (BFST), 669
ß-blockers, 576
Bilateral nephrectomy, 118
Biofilm, 403, 404
Bioimpedance analysis (BIA), 466
Bioimpedance spectroscopy (BIS), 468
Blood cooling, 442
Blood leaks, 450, 451
Blood pressure (BP), 212
Blood urea nitrogen (BUN), 8
Blood volume monitoring (BVM), 441
BM25 (Baxter), 917
Body growth
CKD and RRT, 509
clinical presentation
during infancy, 513

during mid-childhood, 513
growth during infancy, 513
intrauterine growth, 512
pubertal development, 513–515
pubertal growth, 515
segmental growth, 515
endocrine changes
GH signaling, 522–524
gonadal hormones, 521–522
gonadotropins, 521–522
growth hormone receptor, 522–524
growth hormone secretion and metabolism, 522
insulin-like growth factor plasma binding, 524
tissue action, 524
final height and height prediction, 510–511
growth failure
acid-base/electrolyte abnormalities, 526
adverse events, 532–533
in children with CKD, 515, 517, 518
CKD-MBD, 520, 521
effects of rhGH, 529–531

977
endocrine therapies, 528, 529
gastrostomy tubes, 525
intensified dialysis, 526–527
metabolic acidosis, 519, 520
protein-calorie malnutrition, 519
renal dysplasia, 518
rhGH treatment strategies, 531–532

targeted caloric intake, 525
transplantation, 527–528
metabolic and endocrine homeostasis, 509
physical activity, 521
rhGH therapy, 533
Body surface area (BSA), 198
Body weight (BW), 198
Bone alkaline phosphatase (BAP), 521
Bone mineral disorder (MBD), 471
Bone mineral management, 471–472
Bridge therapy, 820
B-type natriuretic peptide (BNP), 160, 562
C
Ca-channel blockers, 576
Calcimimetics, 528
Calcitriol, 549
Calcium-basedbinders, 542
Calcium oxalate, 553
Carbamylglutamate, 913
Cardiac impairment, 212
Cardio-renal pediatric dialysis emergency machine
(Carpediem™), 381, 876
Cardiovascular disease (CVD), 541
bone-vascular link, 574
CAC, 569–570
Ca–P–PTH and vitamin D management, 576–579
epidemiology of, 559–560
evaluation and management of, 574
HDF, 575
hypertension and LVH, prevention and treatment,

575–576
left ventricular structure and function, 565–569
lipid abnormalities, prevention and treatment, 579
lipoprotein risk factors, 560
physiological inhibitors of, 570–571
progression of vascular calcification, 570
supportive measures, 579
surrogate measures of cardiovascular damage, 565
“traditional” risk factors
dyslipidemia, 562
fluid overload, 562
obesity, 562
uremia-related risk factors, 560
dialysis vintage, 564, 565
dysregulations, 563
hyperhomocysteinemia, 564
oxidative stress, 563, 564
vascular biology of calcification, 572–574
vascular structure, 569–570
vitamin D, 571–572
Cardiovascular risk factors, 561