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

Sally Hartley, Maggie McArthur, Michaela Coenen, Maria Cabello, Venusia Covelli, Joanna Roszczynska-Michta, Tuuli Pitkänen, Jerome Bickenbach, Alarcos Cieza

Research output: Contribution to journalArticle

18 Citations (Scopus)

Abstract

Background: 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. Objectives: 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. Methods: 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. Results: 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. Conclusions: 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.

Original languageEnglish
Article numbere96890
JournalPLoS One
Volume9
Issue number5
DOIs
Publication statusPublished - May 7 2014

Fingerprint

Brain Diseases
Brain
brain
life events
employment opportunities
Loneliness
behavior disorders
nervous system diseases
epilepsy
Self-Help Groups
Parkinson disease
focus groups
Life Change Events
Anger
sclerosis
concentrating
Nervous System Diseases
Focus Groups
stroke
Mental Disorders

ASJC Scopus subject areas

  • Agricultural and Biological Sciences(all)
  • Biochemistry, Genetics and Molecular Biology(all)
  • Medicine(all)

Cite this

Hartley, S., McArthur, M., Coenen, M., Cabello, M., Covelli, V., Roszczynska-Michta, J., ... Cieza, A. (2014). Narratives reflecting the lived experiences of people with brain disorders: Common psychosocial difficulties and determinants. PLoS One, 9(5), [e96890]. https://doi.org/10.1371/journal.pone.0096890

Narratives reflecting the lived experiences of people with brain disorders : Common psychosocial difficulties and determinants. / Hartley, Sally; McArthur, Maggie; Coenen, Michaela; Cabello, Maria; Covelli, Venusia; Roszczynska-Michta, Joanna; Pitkänen, Tuuli; Bickenbach, Jerome; Cieza, Alarcos.

In: PLoS One, Vol. 9, No. 5, e96890, 07.05.2014.

Research output: Contribution to journalArticle

Hartley, S, McArthur, M, Coenen, M, Cabello, M, Covelli, V, Roszczynska-Michta, J, Pitkänen, T, Bickenbach, J & Cieza, A 2014, 'Narratives reflecting the lived experiences of people with brain disorders: Common psychosocial difficulties and determinants', PLoS One, vol. 9, no. 5, e96890. https://doi.org/10.1371/journal.pone.0096890
Hartley, Sally ; McArthur, Maggie ; Coenen, Michaela ; Cabello, Maria ; Covelli, Venusia ; Roszczynska-Michta, Joanna ; Pitkänen, Tuuli ; Bickenbach, Jerome ; Cieza, Alarcos. / Narratives reflecting the lived experiences of people with brain disorders : Common psychosocial difficulties and determinants. In: PLoS One. 2014 ; Vol. 9, No. 5.
@article{604755710fc1456483db5efae40e9fb8,
title = "Narratives reflecting the lived experiences of people with brain disorders: Common psychosocial difficulties and determinants",
abstract = "Background: 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. Objectives: 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. Methods: 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. Results: 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. Conclusions: 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.",
author = "Sally Hartley and Maggie McArthur and Michaela Coenen and Maria Cabello and Venusia Covelli and Joanna Roszczynska-Michta and Tuuli Pitk{\"a}nen and Jerome Bickenbach and Alarcos Cieza",
year = "2014",
month = "5",
day = "7",
doi = "10.1371/journal.pone.0096890",
language = "English",
volume = "9",
journal = "PLoS One",
issn = "1932-6203",
publisher = "Public Library of Science",
number = "5",

}

TY - JOUR

T1 - Narratives reflecting the lived experiences of people with brain disorders

T2 - Common psychosocial difficulties and determinants

AU - Hartley, Sally

AU - McArthur, Maggie

AU - Coenen, Michaela

AU - Cabello, Maria

AU - Covelli, Venusia

AU - Roszczynska-Michta, Joanna

AU - Pitkänen, Tuuli

AU - Bickenbach, Jerome

AU - Cieza, Alarcos

PY - 2014/5/7

Y1 - 2014/5/7

N2 - Background: 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. Objectives: 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. Methods: 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. Results: 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. Conclusions: 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.

AB - Background: 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. Objectives: 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. Methods: 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. Results: 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. Conclusions: 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.

UR - http://www.scopus.com/inward/record.url?scp=84900527158&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84900527158&partnerID=8YFLogxK

U2 - 10.1371/journal.pone.0096890

DO - 10.1371/journal.pone.0096890

M3 - Article

C2 - 24805128

AN - SCOPUS:84900527158

VL - 9

JO - PLoS One

JF - PLoS One

SN - 1932-6203

IS - 5

M1 - e96890

ER -