“I Want That Life a Lot…How on Earth Do I Get That?” Examining Challenges for Men With Barth Syndrome in Their Transitions to Adulthood

vFor youth with life-limiting chronic illnesses, transitioning to adulthood in line with age-norms may be difficult due to symptom severity and shortened survival. This study explores whether individuals with Barth syndrome (BTHS), a condition uniquely characterized by extreme prognostic uncertainty...

Descripción completa

Guardado en:

Detalles Bibliográficos
Autores principales:	Iyar Mazar PhD, Sara M. Moorman PhD
Formato:	article
Lenguaje:	EN
Publicado:	SAGE Publishing 2021
Materias:	Medicine (General) R5-920
Acceso en línea:	https://doaj.org/article/fa1ed7b2866d459aa34229bb5d160a06
Etiquetas:	Agregar Etiqueta Sin Etiquetas, Sea el primero en etiquetar este registro!

id	oai:doaj.org-article:fa1ed7b2866d459aa34229bb5d160a06
record_format	dspace
spelling	oai:doaj.org-article:fa1ed7b2866d459aa34229bb5d160a062021-12-01T23:05:10Z“I Want That Life a Lot…How on Earth Do I Get That?” Examining Challenges for Men With Barth Syndrome in Their Transitions to Adulthood2374-374310.1177/23743735211060783https://doaj.org/article/fa1ed7b2866d459aa34229bb5d160a062021-11-01T00:00:00Zhttps://doi.org/10.1177/23743735211060783https://doaj.org/toc/2374-3743vFor youth with life-limiting chronic illnesses, transitioning to adulthood in line with age-norms may be difficult due to symptom severity and shortened survival. This study explores whether individuals with Barth syndrome (BTHS), a condition uniquely characterized by extreme prognostic uncertainty, experience similar or different challenges compared to youth with other conditions. During focus groups with adults with BTHS ( n = 12) and caregivers ( n = 13), participants reported that the ability to independently manage one’s health condition, the social/emotional impacts of BTHS, and the ability to set goals in the context of future uncertainty challenge their transition to adulthood. This aligns with prior research, indicating that prognostic uncertainty may hinder long-term goal setting in BTHS. Implications of these findings include providing strategies for identifying meaningful alternative goals for individuals with chronic illnesses to target, promoting increased autonomy earlier in youth, and fostering coping strategies to manage non-disease related impacts.Iyar Mazar PhDSara M. Moorman PhDSAGE PublishingarticleMedicine (General)R5-920ENJournal of Patient Experience, Vol 8 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine (General) R5-920
spellingShingle	Medicine (General) R5-920 Iyar Mazar PhD Sara M. Moorman PhD “I Want That Life a Lot…How on Earth Do I Get That?” Examining Challenges for Men With Barth Syndrome in Their Transitions to Adulthood
description	vFor youth with life-limiting chronic illnesses, transitioning to adulthood in line with age-norms may be difficult due to symptom severity and shortened survival. This study explores whether individuals with Barth syndrome (BTHS), a condition uniquely characterized by extreme prognostic uncertainty, experience similar or different challenges compared to youth with other conditions. During focus groups with adults with BTHS ( n = 12) and caregivers ( n = 13), participants reported that the ability to independently manage one’s health condition, the social/emotional impacts of BTHS, and the ability to set goals in the context of future uncertainty challenge their transition to adulthood. This aligns with prior research, indicating that prognostic uncertainty may hinder long-term goal setting in BTHS. Implications of these findings include providing strategies for identifying meaningful alternative goals for individuals with chronic illnesses to target, promoting increased autonomy earlier in youth, and fostering coping strategies to manage non-disease related impacts.
format	article
author	Iyar Mazar PhD Sara M. Moorman PhD
author_facet	Iyar Mazar PhD Sara M. Moorman PhD
author_sort	Iyar Mazar PhD
title	“I Want That Life a Lot…How on Earth Do I Get That?” Examining Challenges for Men With Barth Syndrome in Their Transitions to Adulthood
title_short	“I Want That Life a Lot…How on Earth Do I Get That?” Examining Challenges for Men With Barth Syndrome in Their Transitions to Adulthood
title_full	“I Want That Life a Lot…How on Earth Do I Get That?” Examining Challenges for Men With Barth Syndrome in Their Transitions to Adulthood
title_fullStr	“I Want That Life a Lot…How on Earth Do I Get That?” Examining Challenges for Men With Barth Syndrome in Their Transitions to Adulthood
title_full_unstemmed	“I Want That Life a Lot…How on Earth Do I Get That?” Examining Challenges for Men With Barth Syndrome in Their Transitions to Adulthood
title_sort	“i want that life a lot…how on earth do i get that?” examining challenges for men with barth syndrome in their transitions to adulthood
publisher	SAGE Publishing
publishDate	2021
url	https://doaj.org/article/fa1ed7b2866d459aa34229bb5d160a06
work_keys_str_mv	AT iyarmazarphd iwantthatlifealothowonearthdoigetthatexaminingchallengesformenwithbarthsyndromeintheirtransitionstoadulthood AT sarammoormanphd iwantthatlifealothowonearthdoigetthatexaminingchallengesformenwithbarthsyndromeintheirtransitionstoadulthood
_version_	1718404080772055040

“I Want That Life a Lot…How on Earth Do I Get That?” Examining Challenges for Men With Barth Syndrome in Their Transitions to Adulthood

Ejemplares similares