{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T09:38:04Z","timestamp":1790761084356,"version":"4.1.0"},"reference-count":49,"publisher":"Elsevier BV","issue":"6","license":[{"start":{"date-parts":[[2019,6,1]],"date-time":"2019-06-01T00:00:00Z","timestamp":1559347200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2019,6,1]],"date-time":"2019-06-01T00:00:00Z","timestamp":1559347200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["K23DK097308"],"award-info":[{"award-number":["K23DK097308"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000002","name":"NIH","doi-asserted-by":"publisher","award":["U54 AI 082973"],"award-info":[{"award-number":["U54 AI 082973"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100007557","name":"California Institute of Regenerative Medicine","doi-asserted-by":"publisher","award":["CLIN2-09504"],"award-info":[{"award-number":["CLIN2-09504"]}],"id":[{"id":"10.13039\/100007557","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100007557","name":"California Institute of Regenerative Medicine","doi-asserted-by":"publisher","award":["CLIN2-10830"],"award-info":[{"award-number":["CLIN2-10830"]}],"id":[{"id":"10.13039\/100007557","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000057","name":"National Institute of General Medical Sciences","doi-asserted-by":"publisher","award":["R01GM107132"],"award-info":[{"award-number":["R01GM107132"]}],"id":[{"id":"10.13039\/100000057","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000002","name":"NIH","doi-asserted-by":"publisher","award":["K23MH093689"],"award-info":[{"award-number":["K23MH093689"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","jacionline.org","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Journal of Allergy and Clinical Immunology"],"published-print":{"date-parts":[[2019,6]]},"DOI":"10.1016\/j.jaci.2018.10.017","type":"journal-article","created":{"date-parts":[[2018,10,25]],"date-time":"2018-10-25T14:00:13Z","timestamp":1540476013000},"page":"2271-2278","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":15,"title":["Supporting caregivers during hematopoietic cell transplantation for children with primary immunodeficiency disorders"],"prefix":"10.1016","volume":"143","author":[{"given":"Jennie","family":"Yoo","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meghan C.","family":"Halley","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"E. Anne","family":"Lown","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Veronica","family":"Yank","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katherine","family":"Ort","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Morton J.","family":"Cowan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Morna J.","family":"Dorsey","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heather","family":"Smith","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sumathi","family":"Iyengar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher","family":"Scalchunes","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christina","family":"Mangurian","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.jaci.2018.10.017_bib1","doi-asserted-by":"crossref","first-page":"94","DOI":"10.1093\/jamia\/ocv116","article-title":"Identifying unmet informational needs in the inpatient setting to increase patient and caregiver engagement in the context of pediatric hematopoietic stem cell transplantation","volume":"23","author":"Kaziunas","year":"2016","journal-title":"J Am Med Inform Assoc"},{"key":"10.1016\/j.jaci.2018.10.017_bib2","doi-asserted-by":"crossref","first-page":"691","DOI":"10.1542\/peds.112.3.691","article-title":"Family-centered care and the pediatrician's role","volume":"112","year":"2003","journal-title":"Pediatrics"},{"key":"10.1016\/j.jaci.2018.10.017_bib3","doi-asserted-by":"crossref","first-page":"671","DOI":"10.1038\/bmt.2012.208","article-title":"Validating the positive impact of in-hospital lay care-partner support on patient survival in allogeneic BMT: a prospective study","volume":"48","author":"Foster","year":"2013","journal-title":"Bone Marrow Transplant"},{"key":"10.1016\/j.jaci.2018.10.017_bib4","doi-asserted-by":"crossref","first-page":"1134","DOI":"10.1038\/bmt.2010.74","article-title":"Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: a review","volume":"45","author":"Packman","year":"2010","journal-title":"Bone Marrow Transplant"},{"key":"10.1016\/j.jaci.2018.10.017_bib5","doi-asserted-by":"crossref","first-page":"934","DOI":"10.1038\/bmt.2011.206","article-title":"Differences in mothers and fathers psychological distress after pediatric SCT: a longitudinal study","volume":"47","author":"Barrera","year":"2012","journal-title":"Bone Marrow Transplant"},{"issue":"Suppl 5","key":"10.1016\/j.jaci.2018.10.017_bib6","first-page":"S419","article-title":"Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue","volume":"62","author":"Wiener","year":"2015","journal-title":"Pediatr Blood Cancer"},{"key":"10.1016\/j.jaci.2018.10.017_bib7","doi-asserted-by":"crossref","first-page":"f4163","DOI":"10.1136\/bmj.f4163","article-title":"The missing vital sign","volume":"347","author":"Mangurian","year":"2013","journal-title":"BMJ"},{"key":"10.1016\/j.jaci.2018.10.017_bib8","doi-asserted-by":"crossref","first-page":"125","DOI":"10.1016\/j.jcf.2017.08.016","article-title":"Caregiver burden of parents of young children with cystic fibrosis","volume":"17","author":"Fitzgerald","year":"2018","journal-title":"J Cyst Fibros"},{"key":"10.1016\/j.jaci.2018.10.017_bib9","doi-asserted-by":"crossref","first-page":"541","DOI":"10.1111\/hae.12379","article-title":"Understanding the experience of caring for children with haemophilia: cross-sectional study of caregivers in the United States","volume":"20","author":"DeKoven","year":"2014","journal-title":"Haemophilia"},{"key":"10.1016\/j.jaci.2018.10.017_bib10","doi-asserted-by":"crossref","first-page":"814","DOI":"10.1093\/jpepsy\/jsp138","article-title":"Risk factors associated with depressive symptoms in caregivers of children with type 1 diabetes or cystic fibrosis","volume":"35","author":"Driscoll","year":"2010","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jaci.2018.10.017_bib11","doi-asserted-by":"crossref","first-page":"3220","DOI":"10.1200\/JCO.2003.12.156","article-title":"Identifying psychosocial risk indicative of subsequent resource use in families of newly diagnosed pediatric oncology patients","volume":"21","author":"Kazak","year":"2003","journal-title":"J Clin Oncol"},{"key":"10.1016\/j.jaci.2018.10.017_bib12","doi-asserted-by":"crossref","first-page":"1119","DOI":"10.1038\/bmt.2015.113","article-title":"Prognostic understanding, quality of life and mood in patients undergoing hematopoietic stem cell transplantation","volume":"50","author":"El-Jawahri","year":"2015","journal-title":"Bone Marrow Transplant"},{"key":"10.1016\/j.jaci.2018.10.017_bib13","doi-asserted-by":"crossref","first-page":"395","DOI":"10.1093\/jpepsy\/jsw097","article-title":"Meta-analysis: caregiver and youth uncertainty in pediatric chronic illness","volume":"42","author":"Szulczewski","year":"2017","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jaci.2018.10.017_bib14","doi-asserted-by":"crossref","first-page":"269","DOI":"10.1002\/pbc.21577","article-title":"The relationship of parental overprotection, perceived vulnerability, and parenting stress to behavioral, emotional, and social adjustment in children with cancer","volume":"51","author":"Colletti","year":"2008","journal-title":"Pediatr Blood Cancer"},{"key":"10.1016\/j.jaci.2018.10.017_bib15","doi-asserted-by":"crossref","first-page":"453","DOI":"10.1093\/jpepsy\/jsg036","article-title":"The influence of parental distress on child depressive symptoms in juvenile rheumatic diseases: the moderating effect of illness intrusiveness","volume":"28","author":"Wagner","year":"2003","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jaci.2018.10.017_bib16","doi-asserted-by":"crossref","first-page":"531","DOI":"10.1093\/jpepsy\/jst010","article-title":"Impact of a parent-based interdisciplinary intervention for mothers on adjustment in children newly diagnosed with cancer","volume":"38","author":"Fedele","year":"2013","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jaci.2018.10.017_bib17","doi-asserted-by":"crossref","first-page":"171","DOI":"10.1111\/j.0197-6664.2005.00014.x","article-title":"Parent-child relationships and quality of life: resilience among childhood cancer survivors","volume":"54","author":"Orbuch","year":"2005","journal-title":"Family Relations"},{"key":"10.1016\/j.jaci.2018.10.017_bib18","doi-asserted-by":"crossref","first-page":"331","DOI":"10.1093\/jpepsy\/25.5.331","article-title":"Brief report: parents of children undergoing bone marrow transplantation: documenting stress and piloting a psychological intervention program","volume":"25","author":"Streisand","year":"2000","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jaci.2018.10.017_bib19","doi-asserted-by":"crossref","first-page":"741","DOI":"10.1097\/PCC.0000000000001586","article-title":"Involvements of parents in the care of preterm infants: a pilot study evaluating a family-centered care intervention in a chinese neonatal ICU","volume":"19","author":"Zhang","year":"2018","journal-title":"Pediatr Crit Care Med"},{"key":"10.1016\/j.jaci.2018.10.017_bib20","doi-asserted-by":"crossref","first-page":"38","DOI":"10.1186\/s12955-017-0602-3","article-title":"The impact of preterm birth <37 weeks on parents and families: a cross-sectional study in the 2 years after discharge from the neonatal intensive care unit","volume":"15","author":"Lakshmanan","year":"2017","journal-title":"Health Qual Life Outcomes"},{"key":"10.1016\/j.jaci.2018.10.017_bib21","doi-asserted-by":"crossref","first-page":"389","DOI":"10.1037\/ccp0000087","article-title":"A randomized clinical trial of a parent-focused social-cognitive processing intervention for caregivers of children undergoing hematopoetic stem cell transplantation","volume":"84","author":"Manne","year":"2016","journal-title":"J Consult Clin Psychol"},{"key":"10.1016\/j.jaci.2018.10.017_bib22","doi-asserted-by":"crossref","first-page":"10","DOI":"10.1016\/j.ijnurstu.2014.06.011","article-title":"Predictors of parent post-traumatic stress symptoms after child hospitalization on general pediatric wards: a prospective cohort study","volume":"52","author":"Franck","year":"2015","journal-title":"Int J Nurs Stud"},{"key":"10.1016\/j.jaci.2018.10.017_bib23","doi-asserted-by":"crossref","first-page":"1582","DOI":"10.1037\/a0037913","article-title":"Coping flexibility and psychological adjustment to stressful life changes: a meta-analytic review","volume":"140","author":"Cheng","year":"2014","journal-title":"Psychol Bull"},{"key":"10.1016\/j.jaci.2018.10.017_bib24","doi-asserted-by":"crossref","first-page":"729","DOI":"10.1001\/jama.2014.9132","article-title":"Newborn screening for severe combined immunodeficiency in 11 screening programs in the United States","volume":"312","author":"Kwan","year":"2014","journal-title":"JAMA"},{"key":"10.1016\/j.jaci.2018.10.017_bib25","doi-asserted-by":"crossref","first-page":"477","DOI":"10.1023\/A:1026416017763","article-title":"Primary immunodeficiency diseases in Norway","volume":"20","author":"Stray-Pedersen","year":"2000","journal-title":"J Clin Immunol"},{"key":"10.1016\/j.jaci.2018.10.017_bib26","doi-asserted-by":"crossref","first-page":"155","DOI":"10.1097\/00005792-200005000-00003","article-title":"Chronic granulomatous disease. Report on a national registry of 368 patients","volume":"79","author":"Winkelstein","year":"2000","journal-title":"Medicine"},{"key":"10.1016\/j.jaci.2018.10.017_bib27","doi-asserted-by":"crossref","first-page":"167","DOI":"10.1159\/000376585","article-title":"The WHO-5 well-being index: a systematic review of the literature","volume":"84","author":"Topp","year":"2015","journal-title":"Psychother Psychosom"},{"key":"10.1016\/j.jaci.2018.10.017_bib28","first-page":"427","article-title":"Qualitative data analysis","volume":"1","author":"Miles","year":"2014","journal-title":"Eur J Sci Educ"},{"key":"10.1016\/j.jaci.2018.10.017_bib29","doi-asserted-by":"crossref","first-page":"105","DOI":"10.1016\/j.jogn.2017.01.013","article-title":"Anxiety screening during assessment of emotional distress in mothers of hospitalized newborns","volume":"47","author":"McCabe-Beane","year":"2018","journal-title":"J Obstet Gynecol neonatal Nurs"},{"key":"10.1016\/j.jaci.2018.10.017_bib30","doi-asserted-by":"crossref","first-page":"61","DOI":"10.1016\/j.jpeds.2016.07.008","article-title":"Social emotional factors increase risk of postpartum depression in mothers of preterm infants","volume":"179","author":"Hawes","year":"2016","journal-title":"J Pediatr"},{"key":"10.1016\/j.jaci.2018.10.017_bib31","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1186\/s12888-018-1616-z","article-title":"Resilience and burden in caregivers of older adults: moderating and mediating effects of perceived social support","volume":"18","author":"Ong","year":"2018","journal-title":"BMC Psychiatry"},{"key":"10.1016\/j.jaci.2018.10.017_bib32","doi-asserted-by":"crossref","first-page":"622","DOI":"10.2188\/jea.JE20150263","article-title":"Informal and formal social support and caregiver burden: the AGES Caregiver Survey","volume":"26","author":"Shiba","year":"2016","journal-title":"J Epidemiol"},{"key":"10.1016\/j.jaci.2018.10.017_bib33","doi-asserted-by":"crossref","first-page":"833","DOI":"10.1111\/j.1365-2214.2011.01294.x","article-title":"Parents as transition experts? Qualitative findings from a pilot parent-led peer support group","volume":"37","author":"Kingsnorth","year":"2011","journal-title":"Child Care Health Dev"},{"key":"10.1016\/j.jaci.2018.10.017_bib34","doi-asserted-by":"crossref","first-page":"169","DOI":"10.1186\/s12888-016-0861-2","article-title":"Take A\u00a0Breath: study protocol for a randomized controlled trial of an online group intervention to reduce traumatic stress in parents of children with a life threatening illness or injury","volume":"16","author":"Rayner","year":"2016","journal-title":"BMC Psychiatry"},{"key":"10.1016\/j.jaci.2018.10.017_bib35","doi-asserted-by":"crossref","first-page":"61","DOI":"10.1016\/j.ejon.2016.08.008","article-title":"Addressing behavioral impacts of childhood leukemia: a feasibility pilot randomized controlled trial of a group videoconferencing parenting intervention","volume":"24","author":"Williams","year":"2016","journal-title":"Eur J Oncol Nurs"},{"key":"10.1016\/j.jaci.2018.10.017_bib36","doi-asserted-by":"crossref","first-page":"576","DOI":"10.1007\/s10897-016-0031-1","article-title":"Feasibility and preliminary efficacy of an internet support group for parents of a child with neurofibromatosis type 1: a pilot study","volume":"26","author":"Martin","year":"2017","journal-title":"J Genet Couns"},{"key":"10.1016\/j.jaci.2018.10.017_bib37","doi-asserted-by":"crossref","first-page":"588","DOI":"10.1093\/jpepsy\/jsy008","article-title":"Featured article: caregiver perceptions of stress and sibling conflict during pediatric cancer treatment","volume":"43","author":"Fladeboe","year":"2018","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jaci.2018.10.017_bib38","doi-asserted-by":"crossref","DOI":"10.1542\/peds.2016-1057","article-title":"Family strategies to support siblings of pediatric hematopoietic stem cell transplant patients","volume":"139","author":"White","year":"2017","journal-title":"Pediatrics"},{"key":"10.1016\/j.jaci.2018.10.017_bib39","doi-asserted-by":"crossref","first-page":"367","DOI":"10.1017\/S1478951517001018","article-title":"The need to support caregivers during pediatric bone marrow transplantation (BMT): a case report","volume":"16","author":"Mangurian","year":"2018","journal-title":"Palliat Support Care"},{"key":"10.1016\/j.jaci.2018.10.017_bib40","doi-asserted-by":"crossref","first-page":"1233","DOI":"10.1038\/bmt.2016.103","article-title":"Financial impact of allogeneic hematopoietic cell transplantation on patients and families over 2 years: results from a multicenter pilot study","volume":"51","author":"Denzen","year":"2016","journal-title":"Bone Marrow Transplant"},{"key":"10.1016\/j.jaci.2018.10.017_bib41","doi-asserted-by":"crossref","first-page":"e26965","DOI":"10.1002\/pbc.26965","article-title":"Sleep disruption in\u00a0caregivers of pediatric stem cell recipients","volume":"65","author":"Coleman","year":"2018","journal-title":"Pediatr Blood Cancer"},{"key":"10.1016\/j.jaci.2018.10.017_bib42","first-page":"1","article-title":"Understanding the role of social media in online health: a global perspective on online social support","volume":"19","author":"Lee","year":"2013","journal-title":"First Monday"},{"key":"10.1016\/j.jaci.2018.10.017_bib43","doi-asserted-by":"crossref","first-page":"1329","DOI":"10.1200\/JCO.2011.39.1870","article-title":"Specificity of problem-solving skills training in mothers of children newly diagnosed with cancer: results of a multisite randomized clinical trial","volume":"31","author":"Sahler","year":"2013","journal-title":"J Clin Oncol"},{"key":"10.1016\/j.jaci.2018.10.017_bib44","doi-asserted-by":"crossref","first-page":"336","DOI":"10.5114\/ceji.2017.72825","article-title":"Evaluation of infectious and non-infectious complications in patients with primary immunodeficiency","volume":"42","author":"Bazregari","year":"2017","journal-title":"Cent Eur J Immunol"},{"key":"10.1016\/j.jaci.2018.10.017_bib45","doi-asserted-by":"crossref","first-page":"423","DOI":"10.2147\/PPA.S156983","article-title":"In-depth interviews of patients with primary immunodeficiency who have experienced pump and rapid push subcutaneous infusions of immunoglobulins reveal new insights on their preference and expectations","volume":"12","author":"Cozon","year":"2018","journal-title":"Patient Prefer Adherence"},{"key":"10.1016\/j.jaci.2018.10.017_bib46","doi-asserted-by":"crossref","first-page":"671","DOI":"10.1111\/j.1399-3038.2011.01167.x","article-title":"Clinical characteristics of pediatric patients evaluated for primary immunodeficiency","volume":"22","author":"Macginnitie","year":"2011","journal-title":"Pediatr Allergy Immunol"},{"key":"10.1016\/j.jaci.2018.10.017_bib47","doi-asserted-by":"crossref","first-page":"696","DOI":"10.1007\/s10875-015-0201-1","article-title":"Primary immunodeficiency diseases: an update on the classification from the International Union of Immunological Societies Expert Committee for Primary Immunodeficiency 2015","volume":"35","author":"Picard","year":"2015","journal-title":"J Clin Immunol"},{"key":"10.1016\/j.jaci.2018.10.017_bib48","doi-asserted-by":"crossref","first-page":"174","DOI":"10.1007\/s10875-017-0472-9","article-title":"Exercise perception and behaviors in individuals living with primary immunodeficiency disease","volume":"38","author":"Sowers","year":"2018","journal-title":"J Clin Immunol"},{"key":"10.1016\/j.jaci.2018.10.017_bib49","doi-asserted-by":"crossref","first-page":"496","DOI":"10.1007\/s10875-017-0409-3","article-title":"Quality of life, treatment beliefs, and treatment satisfaction in children treated for primary immunodeficiency with SCIg","volume":"37","author":"Sultan","year":"2017","journal-title":"J Clin Immunol"}],"container-title":["Journal of Allergy and Clinical Immunology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0091674918315082?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0091674918315082?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,9,25]],"date-time":"2025-09-25T09:21:21Z","timestamp":1758792081000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0091674918315082"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,6]]},"references-count":49,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2019,6]]}},"alternative-id":["S0091674918315082"],"URL":"https:\/\/doi.org\/10.1016\/j.jaci.2018.10.017","relation":{},"ISSN":["0091-6749"],"issn-type":[{"value":"0091-6749","type":"print"}],"subject":[],"published":{"date-parts":[[2019,6]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Supporting caregivers during hematopoietic cell transplantation for children with primary immunodeficiency disorders","name":"articletitle","label":"Article Title"},{"value":"Journal of Allergy and Clinical Immunology","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.jaci.2018.10.017","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"Published by Elsevier Inc. on behalf of the American Academy of Allergy, Asthma & Immunology","name":"copyright","label":"Copyright"}]}}