"This is our life now. Our new normal": A qualitative study of the unmet needs of carers of stroke survivors

PLoS One. 2019 May 8;14(5):e0216682. doi: 10.1371/journal.pone.0216682. eCollection 2019.

Abstract

Many stroke survivors require care from informal carers such as family members and friends who may experience adverse impacts. This study aimed to qualitatively explore the unmet needs of carers of stroke survivors, and their preferences for interventions and support services. We conducted 24 semi-structured, qualitative interviews with carers of stroke survivors from the Hunter region, Australia. Inductive thematic analysis was used in the context of a needs-led framework to identify key themes of their unmet needs. Key unmet needs identified by carers of stroke survivors in this study centred on four main themes: (1) social relationships and support; (2) adequacy of information; (3) taking care of oneself; and (4) accessing appropriate services. Carers of stroke survivors desired the development of services which provide connectivity to information, training, education and community support; and inclusion in a community with social relationships and other carers of stroke survivors. Ongoing unmet needs often result in adverse health and quality of life outcomes for carers of stroke survivors. Co-designed programs and resources for carers, particularly relating to unmet needs in social, information, self-care and service access domains are needed.

Publication types

  • Evaluation Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Australia
  • Caregivers / psychology*
  • Family
  • Female
  • Friends
  • Humans
  • Interview, Psychological / methods
  • Male
  • Middle Aged
  • Qualitative Research
  • Quality of Life / psychology*
  • Self Care
  • Social Support
  • Stroke / physiopathology
  • Stroke Rehabilitation / psychology*
  • Survivors / psychology

Grants and funding

AMJD is supported by a Research Training Program (RTP), University of Newcastle PhD Scholarship, https://www.newcastle.edu.au/ and Hunter Medical Research Institute/Emlyn and Jennie Thomas Postgraduate Medical Research Scholarship, https://hmri.org.au/. ALB is supported by an NHMRC Senior Research Fellowship (APP1135901), https://nhmrc.gov.au/. NJS was the recipient of a co-funded National Health and Medical Research Council/National Heart Foundation Career Development/Future Leader Fellowship (APPS1110629/100827), https://nhmrc.gov.au/; https://www.heartfoundation.org.au/. BB is supported by an NHMRC Career Development Fellowship (APP1063206), https://nhmrc.gov.au/ and a Faculty of Health and Medicine, University of Newcastle, Faculty of Health and Medicine Gladys M Brawn Career Development Fellowship, https://www.newcastle.edu.au/. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.