caa a22 4500 605545065 CHVBK 20210128100934.0 cr unu---uuuuu 210128e20150401xx s 000 0 eng 10.1007/s10897-014-9773-9 doi (NATIONALLICENCE)springer-10.1007/s10897-014-9773-9 "Is it Going to Hurt?”: The Impact of the Diagnostic Odyssey on Children and Their Families [Elektronische Daten] [Nikkola Carmichael, Judith Tsipis, Gail Windmueller, Leslie Mandel, Elicia Estrella] The pediatric diagnostic odyssey is a period of uncertainty and emotional turmoil for families, often characterized by multiple minor medical procedures (such as venipuncture) that children may find distressing. Interventions to reduce distress are rarely offered, despite evidence that this is crucial both for avoiding anticipatory anxiety before future procedures and for improving healthcare compliance in adulthood. We interviewed ten mothers of children with neuromuscular disorders, asking about their perceptions of their child's experiences with different medical procedures, the emotional impact of the diagnostic odyssey, implications of obtaining a diagnosis, and interactions with healthcare providers. We coded interviews in ATLAS.ti (version 7.0) based on a priori and emergent themes, and analyzed them based on the principles of interpretive description. We found that predicting and assessing children's reactions to procedures is challenging; parents reported non-invasive procedures such as x-rays were distressing for some children, and that providers did not detect subtle indicators of distress. Parents valued obtaining a diagnosis because it validated their concerns, enabled planning for the child's future healthcare needs, and allowed access to established support networks. This study suggests that healthcare providers can improve the experience of the diagnostic odyssey by validating family concerns and connecting them to support services that are available without a diagnosis. National Society of Genetic Counselors, Inc., 2014 Genetic counseling nationallicence Diagnostic odyssey nationallicence Uncertainty nationallicence Neuromuscular disorder nationallicence Anticipatory anxiety nationallicence Distress nationallicence Medical procedures nationallicence Venipuncture nationallicence Carmichael Nikkola Genetic Counseling Program, Biology Department, Brandeis University, Waltham, MA, USA aut Tsipis Judith Genetic Counseling Program, Biology Department, Brandeis University, Waltham, MA, USA aut Windmueller Gail Department of Child Life Services, Boston Children's Hospital, Boston, MA, USA aut Mandel Leslie School of Nursing, Science and Health Professions, Regis College, Weston, MA, USA aut Estrella Elicia Department of Genetics & Genomics, Boston Children's Hospital, Boston, MA, USA aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/2(2015-04-01), 325-335 1059-7700 24:2<325 2015 24 10897 https://doi.org/10.1007/s10897-014-9773-9 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9773-9 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Carmichael Nikkola Genetic Counseling Program, Biology Department, Brandeis University, Waltham, MA, USA aut NATIONALLICENCE 700 1- Tsipis Judith Genetic Counseling Program, Biology Department, Brandeis University, Waltham, MA, USA aut NATIONALLICENCE 700 1- Windmueller Gail Department of Child Life Services, Boston Children's Hospital, Boston, MA, USA aut NATIONALLICENCE 700 1- Mandel Leslie School of Nursing, Science and Health Professions, Regis College, Weston, MA, USA aut NATIONALLICENCE 700 1- Estrella Elicia Department of Genetics & Genomics, Boston Children's Hospital, Boston, MA, USA aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/2(2015-04-01), 325-335 1059-7700 24:2<325 2015 24 10897