I’m going to tell you a little about myself: Illness centrality, self-image and identity in cystic fibrosis

This study assessed the illness centrality of adolescents with CF and the specific ways that CF may affect adolescents’ identities, through the qualitative analysis of video narratives. Adolescents with CF were loaned video cameras and asked to “show us your life outside the hospital” and to “teach...

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Autores principales:	Susan Horky, Laura Sherman, Julie Polvinen, Medhavi Saxena, Michael Rich
Formato:	article
Lenguaje:	EN
Publicado:	The Beryl Institute 2017
Materias:	self image identity centrality adolescents cystic fibrosis experience video Medicine (General) R5-920 Public aspects of medicine RA1-1270
Acceso en línea:	https://doaj.org/article/99e068fd8f6940d5895673fc1d47119c
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spelling	oai:doaj.org-article:99e068fd8f6940d5895673fc1d47119c2021-11-15T04:22:14ZI’m going to tell you a little about myself: Illness centrality, self-image and identity in cystic fibrosis2372-0247https://doaj.org/article/99e068fd8f6940d5895673fc1d47119c2017-11-01T00:00:00Zhttps://pxjournal.org/journal/vol4/iss3/15https://doaj.org/toc/2372-0247This study assessed the illness centrality of adolescents with CF and the specific ways that CF may affect adolescents’ identities, through the qualitative analysis of video narratives. Adolescents with CF were loaned video cameras and asked to “show us your life outside the hospital” and to “teach your healthcare team about your CF.” Four major themes were identified related to illness centrality: CF is Central, CF is Compartmentalized, CF is Integrated into Self Image, CF is Denied. Integration and compartmentalization often co-existed. Four themes emerged related to the role of CF in self-image and identity: (1) Valence (positive or negative); (2) Control (no control or some control); (3) Difference/Normalcy (different, normal, normal except for CF); (4) Acceptance/adaptation (acknowledgement of CF, reworking life to accommodate CF). Adolescents did not have just one feeling about CF but felt differently at different times. Younger and/or healthier adolescents were less likely to focus on CF as central to their self-image. When not dealing directly with treatments or clinic visits, these adolescents had identities comprised largely of “typical” adolescent interests such as school, friends, hobbies, and family. CF played a more prominent role in the identities of older and sicker adolescents. Adolescents also found ways to adapt or alter their lives and their CF-related activities to make them feel more like “normal” adolescents. Implications for treatment are provided.Susan HorkyLaura ShermanJulie PolvinenMedhavi SaxenaMichael RichThe Beryl Institutearticleself imageidentitycentralityadolescentscystic fibrosisexperiencevideoMedicine (General)R5-920Public aspects of medicineRA1-1270ENPatient Experience Journal (2017)
institution	DOAJ
collection	DOAJ
language	EN
topic	self image identity centrality adolescents cystic fibrosis experience video Medicine (General) R5-920 Public aspects of medicine RA1-1270
spellingShingle	self image identity centrality adolescents cystic fibrosis experience video Medicine (General) R5-920 Public aspects of medicine RA1-1270 Susan Horky Laura Sherman Julie Polvinen Medhavi Saxena Michael Rich I’m going to tell you a little about myself: Illness centrality, self-image and identity in cystic fibrosis
description	This study assessed the illness centrality of adolescents with CF and the specific ways that CF may affect adolescents’ identities, through the qualitative analysis of video narratives. Adolescents with CF were loaned video cameras and asked to “show us your life outside the hospital” and to “teach your healthcare team about your CF.” Four major themes were identified related to illness centrality: CF is Central, CF is Compartmentalized, CF is Integrated into Self Image, CF is Denied. Integration and compartmentalization often co-existed. Four themes emerged related to the role of CF in self-image and identity: (1) Valence (positive or negative); (2) Control (no control or some control); (3) Difference/Normalcy (different, normal, normal except for CF); (4) Acceptance/adaptation (acknowledgement of CF, reworking life to accommodate CF). Adolescents did not have just one feeling about CF but felt differently at different times. Younger and/or healthier adolescents were less likely to focus on CF as central to their self-image. When not dealing directly with treatments or clinic visits, these adolescents had identities comprised largely of “typical” adolescent interests such as school, friends, hobbies, and family. CF played a more prominent role in the identities of older and sicker adolescents. Adolescents also found ways to adapt or alter their lives and their CF-related activities to make them feel more like “normal” adolescents. Implications for treatment are provided.
format	article
author	Susan Horky Laura Sherman Julie Polvinen Medhavi Saxena Michael Rich
author_facet	Susan Horky Laura Sherman Julie Polvinen Medhavi Saxena Michael Rich
author_sort	Susan Horky
title	I’m going to tell you a little about myself: Illness centrality, self-image and identity in cystic fibrosis
title_short	I’m going to tell you a little about myself: Illness centrality, self-image and identity in cystic fibrosis
title_full	I’m going to tell you a little about myself: Illness centrality, self-image and identity in cystic fibrosis
title_fullStr	I’m going to tell you a little about myself: Illness centrality, self-image and identity in cystic fibrosis
title_full_unstemmed	I’m going to tell you a little about myself: Illness centrality, self-image and identity in cystic fibrosis
title_sort	i’m going to tell you a little about myself: illness centrality, self-image and identity in cystic fibrosis
publisher	The Beryl Institute
publishDate	2017
url	https://doaj.org/article/99e068fd8f6940d5895673fc1d47119c
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I’m going to tell you a little about myself: Illness centrality, self-image and identity in cystic fibrosis

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