971 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 h[.]
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 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 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 References Hamilton AJ, Caskey FJ, Casula A, Ben-Shlomo Y, Inward CD. 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Autonomy concerns of a child on dialysis Matern Child Nurs J 1975;4(2):101–8 19 Başkale H, Başer G. Living with haemodialysis: the experience of adolescents in Turkey Int J Nurs Pract 2011;17(4):419–27 20 Waters LA. An ethnography of a children’s renal unit: experiences of children and young people with long- term renal illness J Clin Nurs 2008;17(23):3103–14 21 Walker RC, Naicker D, Kara T, Palmer SC. Children’s experiences and expectations of kidney transplantation: a qualitative interview study Nephrology (Carlton) 2019;24(6):647–53 https://doi org/10.1111/nep.13405 22 Snethen JA, Broome ME, Bartels J, Warady BA. Adolescents’ perception of living with end stage renal disease Pediatr Nurs 2001;27(2):159–61 23 Gutman T, Hanson CS, Bernays S, Craig JC, Sinha A, Dart A, et al Child and parental perspectives on communication and decision making in pediatric CKD: a focus group study Am J Kidney Dis 2018;72(4):547–59 24 Nicholas DB, Picone G, Selkirk EK. The lived experiences of children and adolescents with end-stage renal disease Qual Health Res 2011;21(2):162–73 25 Lansing L. Back to school for the child on long-term hemodialysis J Am Assoc Nephrol Nurses Tech 1981;8(5):13–5 26 Braj B, Picone G, Children HF, Cross N, Pearlman L. The lived experience of adolescents who transfer from a pediatric to an adult hemodialysis Centre CANNT J 1999;9(4):41–6 27 Pourghaznein T, Heydari A, Manzari Z, ValizadehZare N “Immersion in an ocean of psychological tension:” the voices of mothers with children undergoing hemodialysis Iran J Nurs Midwifery Res 2018;23(4):253–60 28 Tong A, Lowe A, Sainsbury P, Craig JC. Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study Child Care Health Dev 2010;36(4):549–57 29 MacDonald H. Chronic renal disease: the mother’s experience Pediatr Nurs 1995;21(6):503–37 30 Mieto FS, Bousso RS. The mothers’ experiences in the pediatrics hemodialysis unit J Bras Nefrol 2014;36(4):460–8 31 Geense WW, van Gaal BGI, Knoll JL, Cornelissen EAM, van Achterberg T. The support needs of parents having a child with a chronic kidney disease: a focus group study Child Care Health Dev 2017;43(6):831–8 32 Wightman A, Zimmerman CT, Neul S, Lepere K, Cedars K, Opel D. Caregiver experience in pediatric dialysis Pediatrics 2019;143(2):e20182102 https:// doi.org/10.1542/peds.2018-2102 33 Heaton J, Noyes J, Sloper P, Shah R. Families’ experiences of caring for technology-dependent children: a temporal perspective Health Soc Care Community 2005;13(5):441–50 34 Feenstra B, Boland L, Lawson ML, Harrison D, Kryworuchko J, Leblanc M, et al Interventions to support children’s engagement in health-related decisions: a systematic erview BMC Pediatr 2014;14:109 35 Adams RC, Levy SE. Shared decision-making and children with disabiliies pathways to consensus Pediatrics 2017;139(6):e20170956 36 Thumfart J, Reindl T, Rheinlaender C, Müller D. Supportive palliative care should be integrated into routine care for paediatric patients with life-limiting kidney disease Acta Paediatr 2018;107(3):403–7 37 Watson AR. Strategies to support families of children with end-stage renal failure Pediatr Nephrol 1995;9(5):628–31 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, 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, https://doi.org/10.1007/978-3-030-66861-7 975 976 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), 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 ... 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... Spectrum of Patient and Caregiver Experiences 973 11 Springel T, Laskin B, Furth S. Readmission within 30 days of hospital discharge among children receiving chronic dialysis Clin J Am Soc Nephrol