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The personal and social experiences of community-dwelling younger adults after stroke in Australia: a qualitative interview study
  1. Jessica Shipley1,2,
  2. Julie Luker2,3,
  3. Vincent Thijs2,4,
  4. Julie Bernhardt2
  1. 1 Royal Melbourne Hospital, Melbourne, Victoria, Australia
  2. 2 Stroke Division, Florey Institute of Neuroscience and Mental Health, Melbourne, Victoria, Australia
  3. 3 Sansom Institute for Health Research, University of South Australia, Adelaide, South Australia, Australia
  4. 4 Neurology Department, Austin Health, Melbourne, Victoria, Australia
  1. Correspondence to Dr Jessica Shipley; jessica.shipley{at}mh.org.au

Abstract

Objectives To examine the personal and social experiences of younger adults after stroke.

Design Qualitative study design involving in-depth semi-structured interviews and rigorous qualitative descriptive analysis informed by social constructionism.

Participants Nineteen younger stroke survivors aged 18 to 55 years at the time of their first-ever stroke.

Setting Participants were recruited from urban and rural settings across Australia. Interviews took place in a clinic room of the Florey Institute of Neuroscience and Mental Health (Melbourne, Australia), over an online conference platform or by telephone.

Results Four main themes emerged from the discourses: (1) psycho-emotional experiences after young stroke; (2) losing pre-stroke life construct and relationships; (3) recovering and adapting after young stroke; and (4) invalidated by the old-age, physical concept of stroke. While these themes ran through the narratives of all participants, data analysis also drew out interesting variation between individual experiences.

Conclusions For many younger adults, stroke is an unexpected and devastating life event that profoundly diverts their biography and presents complex and continued challenges to fulfilling age-normative roles. While adaptation, resilience and post-traumatic growth are common, this study suggests that more bespoke support is needed for younger adults after stroke. Increasing public awareness of young stroke is also important, as is increased research attention to this problem.

  • stroke
  • young adult
  • middle aged
  • qualitative research
  • psychosocial aspects
  • patient-centred medicine

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors JS and JB conceived of the study and all authors contributed to the study design. JS collected the data and performed data analysis and interpretation. JB also analysed the complete dataset and JL provided input regarding analysis and interpretation. JS was the primary writer of the manuscript, but JB, JL and VT also contributed to the writing and revised the manuscript for intellectual content. All authors provided final approval of the version to be published.

  • Funding JB was supported by a National Health and Medical Research Council (NHMRC) Established Research Fellowship (grant number N1058635). This research received no other specific grant from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval The study protocol was approved by the Austin Health Human Research Ethics Committee (HREC/16/Austin/451).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Extra data can be accessed via the Dryad data repository at http://datadryad.org/ with the doi:10.5061/dryad.3181p74.

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