Cargando…
A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network
BACKGROUND: Patients’ stories of their illnesses help bridge the divide between patients and providers, facilitating more humane medical care. Illness narratives have been classified into three types: restitution (expectation of recovery), chaos (suffering and loss), and quest (unexpected positive e...
Autores principales: | , , , , , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2017
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5392939/ https://www.ncbi.nlm.nih.gov/pubmed/28416019 http://dx.doi.org/10.1186/s13023-017-0623-3 |
_version_ | 1783229495397842944 |
---|---|
author | Spillmann, Rebecca C. McConkie-Rosell, Allyn Pena, Loren Jiang, Yong-Hui Schoch, Kelly Walley, Nicole Sanders, Camilla Sullivan, Jennifer Hooper, Stephen R. Shashi, Vandana |
author_facet | Spillmann, Rebecca C. McConkie-Rosell, Allyn Pena, Loren Jiang, Yong-Hui Schoch, Kelly Walley, Nicole Sanders, Camilla Sullivan, Jennifer Hooper, Stephen R. Shashi, Vandana |
author_sort | Spillmann, Rebecca C. |
collection | PubMed |
description | BACKGROUND: Patients’ stories of their illnesses help bridge the divide between patients and providers, facilitating more humane medical care. Illness narratives have been classified into three types: restitution (expectation of recovery), chaos (suffering and loss), and quest (unexpected positive effect from illness). Undiagnosed patients have unique illness experiences and obtaining their narratives would provide insights into the medical and emotional impact of living with an undiagnosed illness. Adults and children with undiagnosed diseases apply to be evaluated by the Undiagnosed Diseases Network (UDN). Written illness narratives from 40 UDN applicants, including 20 adult probands who applied for themselves and 20 parents who applied for their children, were analyzed for: 1) narrative content and 2) narrative type. RESULTS: Narrative content: could be grouped into three themes: 1) Expectations of the UDN: the majority felt they had no further healthcare options and hoped the UDN would provide them with a diagnosis, with the adults expecting to return to their previously healthy life and the parents wanting information to manage their child’s healthcare. 2) Personal medical information: the narratives reported worsening of symptoms and some offered opinions regarding the cause of their illness. The proband narratives had few objective findings, while parental narratives had detailed objective information. 3) Experiences related to living with their undiagnosed illness: frustration at being undiagnosed was expressed. The adults felt they had to provide validation of their symptoms to providers, given the lack of objective findings. The parents worried that something relevant to their child’s management was being overlooked. Narrative type: All the narratives were of the chaos type, but for different reasons, with the probands describing loss and suffering and the parents expressing fear for their child’s future. The parental narratives also had elements of restitution and quest, with acceptance of “a new normal”, and an emphasis on the positive aspects of their child’s illness which was absent from the probands. CONCLUSIONS: These narratives illustrate the chaos that coexists with being undiagnosed. The differences between the proband and parental narratives suggest that these two groups have different needs that need to be considered during their evaluation and management. |
format | Online Article Text |
id | pubmed-5392939 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2017 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-53929392017-04-20 A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network Spillmann, Rebecca C. McConkie-Rosell, Allyn Pena, Loren Jiang, Yong-Hui Schoch, Kelly Walley, Nicole Sanders, Camilla Sullivan, Jennifer Hooper, Stephen R. Shashi, Vandana Orphanet J Rare Dis Research BACKGROUND: Patients’ stories of their illnesses help bridge the divide between patients and providers, facilitating more humane medical care. Illness narratives have been classified into three types: restitution (expectation of recovery), chaos (suffering and loss), and quest (unexpected positive effect from illness). Undiagnosed patients have unique illness experiences and obtaining their narratives would provide insights into the medical and emotional impact of living with an undiagnosed illness. Adults and children with undiagnosed diseases apply to be evaluated by the Undiagnosed Diseases Network (UDN). Written illness narratives from 40 UDN applicants, including 20 adult probands who applied for themselves and 20 parents who applied for their children, were analyzed for: 1) narrative content and 2) narrative type. RESULTS: Narrative content: could be grouped into three themes: 1) Expectations of the UDN: the majority felt they had no further healthcare options and hoped the UDN would provide them with a diagnosis, with the adults expecting to return to their previously healthy life and the parents wanting information to manage their child’s healthcare. 2) Personal medical information: the narratives reported worsening of symptoms and some offered opinions regarding the cause of their illness. The proband narratives had few objective findings, while parental narratives had detailed objective information. 3) Experiences related to living with their undiagnosed illness: frustration at being undiagnosed was expressed. The adults felt they had to provide validation of their symptoms to providers, given the lack of objective findings. The parents worried that something relevant to their child’s management was being overlooked. Narrative type: All the narratives were of the chaos type, but for different reasons, with the probands describing loss and suffering and the parents expressing fear for their child’s future. The parental narratives also had elements of restitution and quest, with acceptance of “a new normal”, and an emphasis on the positive aspects of their child’s illness which was absent from the probands. CONCLUSIONS: These narratives illustrate the chaos that coexists with being undiagnosed. The differences between the proband and parental narratives suggest that these two groups have different needs that need to be considered during their evaluation and management. BioMed Central 2017-04-17 /pmc/articles/PMC5392939/ /pubmed/28416019 http://dx.doi.org/10.1186/s13023-017-0623-3 Text en © The Author(s). 2017 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
spellingShingle | Research Spillmann, Rebecca C. McConkie-Rosell, Allyn Pena, Loren Jiang, Yong-Hui Schoch, Kelly Walley, Nicole Sanders, Camilla Sullivan, Jennifer Hooper, Stephen R. Shashi, Vandana A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network |
title | A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network |
title_full | A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network |
title_fullStr | A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network |
title_full_unstemmed | A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network |
title_short | A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network |
title_sort | window into living with an undiagnosed disease: illness narratives from the undiagnosed diseases network |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5392939/ https://www.ncbi.nlm.nih.gov/pubmed/28416019 http://dx.doi.org/10.1186/s13023-017-0623-3 |
work_keys_str_mv | AT spillmannrebeccac awindowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT mcconkierosellallyn awindowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT penaloren awindowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT jiangyonghui awindowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT awindowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT schochkelly awindowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT walleynicole awindowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT sanderscamilla awindowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT sullivanjennifer awindowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT hooperstephenr awindowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT shashivandana awindowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT spillmannrebeccac windowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT mcconkierosellallyn windowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT penaloren windowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT jiangyonghui windowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT windowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT schochkelly windowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT walleynicole windowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT sanderscamilla windowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT sullivanjennifer windowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT hooperstephenr windowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork AT shashivandana windowintolivingwithanundiagnoseddiseaseillnessnarrativesfromtheundiagnoseddiseasesnetwork |