{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,29]],"date-time":"2026-10-29T18:47:25Z","timestamp":1793299645705,"version":"4.5.0"},"reference-count":14,"publisher":"Journal of Neurosurgery Publishing Group (JNSPG)","issue":"5","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2023,5,1]]},"abstract":"<jats:sec>\n<jats:title>OBJECTIVE<\/jats:title>\n<jats:p>Hydrocephalus is inherently unpredictable. Most parents whose child is diagnosed with hydrocephalus do not anticipate the diagnosis, nor can anyone predict if or when a child\u2019s shunt will fail and require emergency surgery. Previous research has shown that children with hydrocephalus and their caregivers experience significant posttraumatic stress symptoms secondary to the diagnosis. This study aims to understand caregiver experiences and needs, identify gaps in resources\/support, and determine opportunities to improve care.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title>METHODS<\/jats:title>\n<jats:p>Semistructured interviews were conducted with parent caregivers of children with hydrocephalus to learn about their experiences with the hydrocephalus diagnosis, hospitalizations, surgeries, coping and support, challenges of caring for a child with hydrocephalus, and logistics for a proposed support program. De-identified interviews were audio-recorded, transcribed, and analyzed for themes.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title>RESULTS<\/jats:title>\n<jats:p>Thematic saturation was reached after 17 interviews. Five major themes emerged: 1) coping with the diagnosis, 2) received support, 3) hydrocephalus management, 4) implications for intervention, and 5) psychosocial stressors for caregivers. A top priority was balanced, trustworthy information delivered with compassion and updated throughout the child\u2019s life. Caregivers described a variety of coping strategies, but a majority reported a need for support in processing complex emotions and dealing with the uncertainty of their child\u2019s hydrocephalus. Most agreed that having a caregiver support network, medical professionals available for referrals and questions, and referrals to support services and therapies would facilitate feeling supported and providing the best care for their children.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title>CONCLUSIONS<\/jats:title>\n<jats:p>Parent caregivers are critical to the health and well-being of children with hydrocephalus, and it is essential to understand their experiences to improve care. Providing well-defined information, psychosocial support, and resources will help to equip parent caregivers to be advocates for their children and to improve both the caregiver and the child\u2019s quality of life.<\/jats:p>\n<\/jats:sec>","DOI":"10.3171\/2022.12.peds22425","type":"journal-article","created":{"date-parts":[[2023,2,10]],"date-time":"2023-02-10T13:58:19Z","timestamp":1676037499000},"page":"433-443","source":"Crossref","is-referenced-by-count":7,"title":["Understanding and identifying the needs of parent caregivers of children with hydrocephalus: a qualitative study"],"prefix":"10.3171","volume":"31","author":[{"given":"Katherine","family":"Barnes","sequence":"first","affiliation":[{"name":"Department of Pediatrics, Division of Neurology, University of Alabama at Birmingham;"},{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery, University of Alabama at Birmingham, Alabama;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathrin","family":"Zimmerman","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery, University of Alabama at Birmingham, Alabama;"},{"name":"Division of Otolaryngology\u2013Head and Neck Surgery, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ivan","family":"Herbey","sequence":"additional","affiliation":[{"name":"Department of Surgery, Division of Gastrointestinal Surgery, University of Alabama at Birmingham, Alabama;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anastasia","family":"Arynchyna-Smith","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery, University of Alabama at Birmingham, Alabama;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bobby","family":"May","sequence":"additional","affiliation":[{"name":"Department of Obstetrics and Gynecology, Duke University School of Medicine, Durham, North Carolina;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Caroline","family":"Arata Wessinger","sequence":"additional","affiliation":[{"name":"Department of Radiology, Baylor University Medical Center, Dallas, Texas; and"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura E.","family":"Dreer","sequence":"additional","affiliation":[{"name":"Departments of Ophthalmology & Visual Sciences and"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lieu","family":"Thompson","sequence":"additional","affiliation":[{"name":"Health Services Administration, University of Alabama at Birmingham, Alabama"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nataliya V.","family":"Ivankova","sequence":"additional","affiliation":[{"name":"Health Services Administration, University of Alabama at Birmingham, Alabama"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Curtis J.","family":"Rozzelle","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery, University of Alabama at Birmingham, Alabama;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"James M.","family":"Johnston","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery, University of Alabama at Birmingham, Alabama;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeffrey P.","family":"Blount","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery, University of Alabama at Birmingham, Alabama;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brandon G.","family":"Rocque","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Division of Pediatric Neurosurgery, University of Alabama at Birmingham, Alabama;"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1754","reference":[{"issue":"10020","key":"b1","series-title":"Lancet","first-page":"788","article-title":"Hydrocephalus in children","volume":"387","author":"Kahle KT","year":"2016","unstructured":"Kahle KT, Kulkarni AV, Limbrick DD Jr, Warf BC. Hydrocephalus in children. Lancet. 2016;387(10020):788\u2013799.26256071"},{"issue":"5","key":"b2","series-title":"J Neurosurg Pediatr","first-page":"483","article-title":"Anxiety, depression, fatigue, and headache burden in the pediatric hydrocephalus population","volume":"26","author":"Zimmerman K","year":"2020","unstructured":"Zimmerman K, May B, Barnes K,  Anxiety, depression, fatigue, and headache burden in the pediatric hydrocephalus population. J Neurosurg Pediatr. 2020;26(5):483\u2013489.32707553"},{"issue":"4","key":"b3","series-title":"J Neurosurg Pediatr","first-page":"353","article-title":"Hydrocephalus-related quality of life as assessed by children and their caregivers","volume":"26","author":"Zimmerman K","year":"2020","unstructured":"Zimmerman K, May B, Barnes K,  Hydrocephalus-related quality of life as assessed by children and their caregivers. J Neurosurg Pediatr. 2020;26(4)353\u2013363.32650310"},{"key":"b4","series-title":"World Neurosurg","first-page":"e66","article-title":"Post-traumatic stress symptoms in caregivers and children with hydrocephalus","volume":"148","author":"Zimmerman K","year":"2021","unstructured":"Zimmerman K, May B, Barnes K,  Post-traumatic stress symptoms in caregivers and children with hydrocephalus. World Neurosurg. 2021;148:e66\u2013e73.33307254"},{"issue":"4S","key":"b5","series-title":"Arch Phys Med Rehabil","first-page":"S76","article-title":"Resilience among caregivers of injured service members: finding the strengths in caregiving","volume":"100","author":"Dreer LE","year":"2019","unstructured":"Dreer LE, Cox MK, McBrayer A, Neumeier WH, Herman C, Malone LA. Resilience among caregivers of injured service members: finding the strengths in caregiving. Arch Phys Med Rehabil. 2019;100(4S):S76\u2013S84.30684488"},{"issue":"3","key":"b6","series-title":"J Neurosurg Pediatr","first-page":"358","article-title":"Psychological comorbidities in pediatric neurosurgery: an opportunity to improve care","volume":"29","author":"Zimmerman K","year":"2022","unstructured":"Zimmerman K, Shlobin NA, Salehani A, Rocque BG. Psychological comorbidities in pediatric neurosurgery: an opportunity to improve care. J Neurosurg Pediatr. 2022;29(3):358\u2013359."},{"issue":"suppl 5","key":"b7","series-title":"Pediatr Blood Cancer","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 L","year":"2015","unstructured":"Wiener L, Kazak AE, Noll RB, Patenaude AF, Kupst MJ. Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue. Pediatr Blood Cancer. 2015;62(suppl 5):S419\u2013S424."},{"key":"b8","article-title":"Applied Thematic Analysis","author":"Guest G","year":"2011","unstructured":"Guest G, MacQueen KM, Namey EE. Applied Thematic Analysis. Sage; 2011."},{"issue":"6","key":"b9","series-title":"Pediatrics","first-page":"e626","article-title":"The health and well-being of caregivers of children with cerebral palsy","volume":"115","author":"Raina P","year":"2005","unstructured":"Raina P, O\u2019Donnell M, Rosenbaum P,  The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115(6):e626\u2013e636.15930188"},{"key":"b10","series-title":"BMC Pediatr","first-page":"1","article-title":"Caregiving process and caregiver burden: conceptual models to guide research and practice","volume":"4","author":"Raina P","year":"2004","unstructured":"Raina P, O\u2019Donnell M, Schwellnus H,  Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatr. 2004;4:1.14723791"},{"issue":"7","key":"b11","series-title":"Support Care Cancer","first-page":"807","article-title":"Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being","volume":"15","author":"Klassen A","year":"2007","unstructured":"Klassen A, Raina P, Reineking S, Dix D, Pritchard S, O\u2019Donnell M. Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being. Support Care Cancer. 2007;15(7):807\u2013818."},{"issue":"1","key":"b12","series-title":"J Neurosurg Pediatr","first-page":"30","article-title":"Coping strategies used by caregivers of children with newly diagnosed brain tumors","volume":"23","author":"Cutillo A","year":"2018","unstructured":"Cutillo A, Zimmerman K, Davies S,  Coping strategies used by caregivers of children with newly diagnosed brain tumors. J Neurosurg Pediatr. 2018;23(1):30\u201339.30485195"},{"key":"b13","series-title":"BMC Pediatr","first-page":"36","article-title":"Play interventions to reduce anxiety and negative emotions in hospitalized children","volume":"16","author":"Li WHC","year":"2016","unstructured":"Li WHC, Chung JOK, Ho KY, Kwok BMC. Play interventions to reduce anxiety and negative emotions in hospitalized children. BMC Pediatr. 2016;16:36.26969158"},{"issue":"6","key":"b14","series-title":"Pediatrics","first-page":"e597","article-title":"Creating opportunities for parent empowerment: program effects on the mental health\/coping outcomes of critically ill young children and their mothers","volume":"113","author":"Melnyk BM","year":"2004","unstructured":"Melnyk BM, Alpert-Gillis L, Feinstein NF,  Creating opportunities for parent empowerment: program effects on the mental health\/coping outcomes of critically ill young children and their mothers. Pediatrics. 2004;113(6):e597\u2013e607.15173543"}],"container-title":["Journal of Neurosurgery: Pediatrics"],"original-title":[],"link":[{"URL":"https:\/\/thejns.org\/view\/journals\/j-neurosurg-pediatr\/31\/5\/article-p433.xml","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/thejns.org\/downloadpdf\/journals\/j-neurosurg-pediatr\/31\/5\/article-p433.xml","content-type":"text\/html","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/thejns.org\/downloadpdf\/journals\/j-neurosurg-pediatr\/31\/5\/article-p433.xml","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,12,6]],"date-time":"2024-12-06T13:04:20Z","timestamp":1733490260000},"score":1,"resource":{"primary":{"URL":"https:\/\/thejns.org\/view\/journals\/j-neurosurg-pediatr\/31\/5\/article-p433.xml"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,5,1]]},"references-count":14,"journal-issue":{"issue":"5"},"URL":"https:\/\/doi.org\/10.3171\/2022.12.peds22425","relation":{},"ISSN":["1933-0707","1933-0715"],"issn-type":[{"value":"1933-0707","type":"print"},{"value":"1933-0715","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,5,1]]}}}