"Is it Going to Hurt?”: The Impact of the Diagnostic Odyssey on Children and Their Families
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| 024 | 7 | 0 | |a 10.1007/s10897-014-9773-9 |2 doi |
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| 245 | 0 | 0 | |a "Is it Going to Hurt?”: The Impact of the Diagnostic Odyssey on Children and Their Families |h [Elektronische Daten] |c [Nikkola Carmichael, Judith Tsipis, Gail Windmueller, Leslie Mandel, Elicia Estrella] |
| 520 | 3 | |a 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. | |
| 540 | |a National Society of Genetic Counselors, Inc., 2014 | ||
| 690 | 7 | |a Genetic counseling |2 nationallicence | |
| 690 | 7 | |a Diagnostic odyssey |2 nationallicence | |
| 690 | 7 | |a Uncertainty |2 nationallicence | |
| 690 | 7 | |a Neuromuscular disorder |2 nationallicence | |
| 690 | 7 | |a Anticipatory anxiety |2 nationallicence | |
| 690 | 7 | |a Distress |2 nationallicence | |
| 690 | 7 | |a Medical procedures |2 nationallicence | |
| 690 | 7 | |a Venipuncture |2 nationallicence | |
| 700 | 1 | |a Carmichael |D Nikkola |u Genetic Counseling Program, Biology Department, Brandeis University, Waltham, MA, USA |4 aut | |
| 700 | 1 | |a Tsipis |D Judith |u Genetic Counseling Program, Biology Department, Brandeis University, Waltham, MA, USA |4 aut | |
| 700 | 1 | |a Windmueller |D Gail |u Department of Child Life Services, Boston Children's Hospital, Boston, MA, USA |4 aut | |
| 700 | 1 | |a Mandel |D Leslie |u School of Nursing, Science and Health Professions, Regis College, Weston, MA, USA |4 aut | |
| 700 | 1 | |a Estrella |D Elicia |u Department of Genetics & Genomics, Boston Children's Hospital, Boston, MA, USA |4 aut | |
| 773 | 0 | |t Journal of Genetic Counseling |d Springer US; http://www.springer-ny.com |g 24/2(2015-04-01), 325-335 |x 1059-7700 |q 24:2<325 |1 2015 |2 24 |o 10897 | |
| 856 | 4 | 0 | |u https://doi.org/10.1007/s10897-014-9773-9 |q text/html |z Onlinezugriff via DOI |
| 898 | |a BK010053 |b XK010053 |c XK010000 | ||
| 900 | 7 | |a Metadata rights reserved |b Springer special CC-BY-NC licence |2 nationallicence | |
| 908 | |D 1 |a research-article |2 jats | ||
| 949 | |B NATIONALLICENCE |F NATIONALLICENCE |b NL-springer | ||
| 950 | |B NATIONALLICENCE |P 856 |E 40 |u https://doi.org/10.1007/s10897-014-9773-9 |q text/html |z Onlinezugriff via DOI | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Carmichael |D Nikkola |u Genetic Counseling Program, Biology Department, Brandeis University, Waltham, MA, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Tsipis |D Judith |u Genetic Counseling Program, Biology Department, Brandeis University, Waltham, MA, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Windmueller |D Gail |u Department of Child Life Services, Boston Children's Hospital, Boston, MA, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Mandel |D Leslie |u School of Nursing, Science and Health Professions, Regis College, Weston, MA, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Estrella |D Elicia |u Department of Genetics & Genomics, Boston Children's Hospital, Boston, MA, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 773 |E 0- |t Journal of Genetic Counseling |d Springer US; http://www.springer-ny.com |g 24/2(2015-04-01), 325-335 |x 1059-7700 |q 24:2<325 |1 2015 |2 24 |o 10897 | ||