Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.

<h4>Background</h4>People with brain disorders - defined as both, mental disorders and neurological disorders experience a wide range of psychosocial difficulties (PSDs) (e.g., concentrating, maintaining energy levels, and maintaining relationships). Research evidence is required to show...

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Autores principales:	Sally Hartley, Maggie McArthur, Michaela Coenen, Maria Cabello, Venusia Covelli, Joanna Roszczynska-Michta, Tuuli Pitkänen, Jerome Bickenbach, Alarcos Cieza
Formato:	article
Lenguaje:	EN
Publicado:	Public Library of Science (PLoS) 2014
Materias:	Medicine R Science Q
Acceso en línea:	https://doaj.org/article/d6fda5ced0c94f29bcc215941df1cfed
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spelling	oai:doaj.org-article:d6fda5ced0c94f29bcc215941df1cfed2021-11-18T08:20:23ZNarratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.1932-620310.1371/journal.pone.0096890https://doaj.org/article/d6fda5ced0c94f29bcc215941df1cfed2014-01-01T00:00:00Zhttps://www.ncbi.nlm.nih.gov/pmc/articles/pmid/24805128/pdf/?tool=EBIhttps://doaj.org/toc/1932-6203<h4>Background</h4>People with brain disorders - defined as both, mental disorders and neurological disorders experience a wide range of psychosocial difficulties (PSDs) (e.g., concentrating, maintaining energy levels, and maintaining relationships). Research evidence is required to show that these PSDs are common across brain disorders.<h4>Objectives</h4>To explore and gain deeper understanding of the experiences of people with seven brain disorders (alcohol dependency, depression, epilepsy, multiple sclerosis, Parkinson's disease, schizophrenia, stroke). It examines the common PSDs and their influencing factors.<h4>Methods</h4>Seventy seven qualitative studies identified in a systematic literature review and qualitative data derived from six focus groups are used to generate first-person narratives representing seven brain disorders. A theory-driven thematic analysis of these narratives identifies the PSDs and their influencing factors for comparison between the seven disorders.<h4>Results</h4>First-person narratives illustrate realities for people with brain disorders facilitating a deeper understanding of their every-day life experiences. Thematic analysis serves to highlight the commonalities, both of PSDs, such as loneliness, anger, uncertainty about the future and problems with work activities, and their determinants, such as work opportunities, trusting relationships and access to self-help groups.<h4>Conclusions</h4>The strength of the methodology and the narratives is that they provide the opportunity for the reader to empathise with people with brain disorders and facilitate deeper levels of understanding of the complexity of the relationship of PSDs, determinants and facilitators. The latter reflect positive aspects of the lives of people with brain disorders. The result that many PSDs and their influencing factors are common to people with different brain disorders opens up the door to the possibility of using cross-cutting interventions involving different sectors. This strengthens the message that 'a great deal can be done' to improve the lived experience of persons with brain disorders when medical interventions are exhausted.Sally HartleyMaggie McArthurMichaela CoenenMaria CabelloVenusia CovelliJoanna Roszczynska-MichtaTuuli PitkänenJerome BickenbachAlarcos CiezaPublic Library of Science (PLoS)articleMedicineRScienceQENPLoS ONE, Vol 9, Iss 5, p e96890 (2014)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine R Science Q
spellingShingle	Medicine R Science Q Sally Hartley Maggie McArthur Michaela Coenen Maria Cabello Venusia Covelli Joanna Roszczynska-Michta Tuuli Pitkänen Jerome Bickenbach Alarcos Cieza Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.
description	<h4>Background</h4>People with brain disorders - defined as both, mental disorders and neurological disorders experience a wide range of psychosocial difficulties (PSDs) (e.g., concentrating, maintaining energy levels, and maintaining relationships). Research evidence is required to show that these PSDs are common across brain disorders.<h4>Objectives</h4>To explore and gain deeper understanding of the experiences of people with seven brain disorders (alcohol dependency, depression, epilepsy, multiple sclerosis, Parkinson's disease, schizophrenia, stroke). It examines the common PSDs and their influencing factors.<h4>Methods</h4>Seventy seven qualitative studies identified in a systematic literature review and qualitative data derived from six focus groups are used to generate first-person narratives representing seven brain disorders. A theory-driven thematic analysis of these narratives identifies the PSDs and their influencing factors for comparison between the seven disorders.<h4>Results</h4>First-person narratives illustrate realities for people with brain disorders facilitating a deeper understanding of their every-day life experiences. Thematic analysis serves to highlight the commonalities, both of PSDs, such as loneliness, anger, uncertainty about the future and problems with work activities, and their determinants, such as work opportunities, trusting relationships and access to self-help groups.<h4>Conclusions</h4>The strength of the methodology and the narratives is that they provide the opportunity for the reader to empathise with people with brain disorders and facilitate deeper levels of understanding of the complexity of the relationship of PSDs, determinants and facilitators. The latter reflect positive aspects of the lives of people with brain disorders. The result that many PSDs and their influencing factors are common to people with different brain disorders opens up the door to the possibility of using cross-cutting interventions involving different sectors. This strengthens the message that 'a great deal can be done' to improve the lived experience of persons with brain disorders when medical interventions are exhausted.
format	article
author	Sally Hartley Maggie McArthur Michaela Coenen Maria Cabello Venusia Covelli Joanna Roszczynska-Michta Tuuli Pitkänen Jerome Bickenbach Alarcos Cieza
author_facet	Sally Hartley Maggie McArthur Michaela Coenen Maria Cabello Venusia Covelli Joanna Roszczynska-Michta Tuuli Pitkänen Jerome Bickenbach Alarcos Cieza
author_sort	Sally Hartley
title	Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.
title_short	Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.
title_full	Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.
title_fullStr	Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.
title_full_unstemmed	Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.
title_sort	narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.
publisher	Public Library of Science (PLoS)
publishDate	2014
url	https://doaj.org/article/d6fda5ced0c94f29bcc215941df1cfed
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Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.

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