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.
  
  
  OBJECTIVE
  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.
authors.affiliation: Faculty of Medicine and Health Sciences, University of East Anglia, Norwich, United Kingdom; Faculty of Health Sciences, University of Sydney, Sydney, New South Wales, Australia; The London School of Hygiene and Tropical Medicine, London, United Kingdom.
authors.forename: Sally
authors.initials: S
authors.lastname: Hartley
authors.affiliation: Faculty of Medicine and Health Sciences, University of East Anglia, Norwich, United Kingdom.
authors.forename: Maggie
authors.initials: M
authors.lastname: McArthur
authors.affiliation: Department of Medical Informatics, Biometry and Epidemiology - IBE, Chair for Public Health and Health Services Research, Research Unit for Biopsychosocial Health, Ludwig-Maximilians-University (LMU), Munich, Germany.
authors.forename: Michaela
authors.initials: M
authors.lastname: Coenen
authors.affiliation: Instituto de Salud Carlos lll CIBERSAM, Faculty of Medicine, Universidad Autonoma de Madrid, Instituto de investigacion de la Princesa (IIS-IP), Madrid, Spain.
authors.forename: Maria
authors.initials: M
authors.lastname: Cabello
authors.affiliation: Neurology, Public Health and Disability Unit, Scientific Directorate, Neurological Institute Carlo Besta IRCCS Foundation, Milan, Italy.
authors.forename: Venusia
authors.initials: V
authors.lastname: Covelli
authors.affiliation: Institute of Neurology and Psychiatry, Warsaw, Poland.
authors.forename: Joanna
authors.initials: J
authors.lastname: Roszczynska-Michta
authors.affiliation: A-Clinic Foundation (A-klinikkasäätiö), Helsinki, Finland.
authors.forename: Tuuli
authors.initials: T
authors.lastname: Pitkänen
authors.affiliation: Swiss Paraplegic Research (SPR), Nottwil, Switzerland.
authors.forename: Jerome
authors.initials: J
authors.lastname: Bickenbach
authors.affiliation: Department of Medical Informatics, Biometry and Epidemiology - IBE, Chair for Public Health and Health Services Research, Research Unit for Biopsychosocial Health, Ludwig-Maximilians-University (LMU), Munich, Germany; Swiss Paraplegic Research (SPR), Nottwil, Switzerland; Faculty of Social and Human Sciences, University of Southampton, Southampton, United Kingdom.
authors.forename: Alarcos
authors.initials: A
authors.lastname: Cieza
mesh_terms: D003863:Depression / Q000175:diagnosis / Q000473:pathology / Q000523:psychology*; D004827:Epilepsy / Q000175:diagnosis / Q000473:pathology / Q000523:psychology*; D006801:Humans; D009103:Multiple Sclerosis / Q000175:diagnosis / Q000473:pathology / Q000523:psychology*; D010300:Parkinson Disease / Q000175:diagnosis* / Q000473:pathology; D012559:Schizophrenia / Q000175:diagnosis / Q000473:pathology; D012565:Schizophrenic Psychology; D012657:Self-Help Groups; D020521:Stroke / Q000175:diagnosis / Q000473:pathology / Q000523:psychology*