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Reclaiming Agency in Care Decisions and Barriers From the Perspectives of Individuals with Acquired Brain Injury and Their Family Members329.72 kB
Published VersionCC BY V4.0, Open Access
Journal article
Reclaiming Agency in Care Decisions and Barriers From the Perspectives of Individuals With Acquired Brain Injury and Their Family Members
Health Expectations, Vol.27(3), pp.1-14
2024
PMID: 38872469
Abstract
Background:
The ability to self-advocate or have a say in one's care is integral to personalised care after acquired brain injury (ABI). This study aimed to understand what constitutes self-advocacy and associated barriers and facilitators throughout hospital transitions and into the community.
Method:
Qualitative methodology was employed with semistructured interviews conducted with 12 people with ABI and 13 family members. Interviews were conducted at predischarge (in-person or via telephone) and 4 months postdischarge (via telephone) from the brain injury rehabilitation unit of a tertiary hospital. Data were thematically analysed using a hybrid deductive–inductive approach.
Results:
Self-advocacy reflects the process of reclaiming agency or people's efforts to exert influence over care decisions after ABI. Agency varies along a continuum, often beginning with impaired processing of the self or environment (loss of agency) before individuals start to understand and question their care (emerging agency) and ultimately plan and direct their ongoing and future care (striving for agency). This process may vary across individuals and contexts. Barriers to self-advocacy for individuals with ABI include neurocognitive deficits that limit capacity and desire for control over decisions, unfamiliar and highly structured environments and lack of family support. Facilitators include neurocognitive recovery, growing desire to self-advocate and scaffolded support from family and clinicians.
Conclusion:
Self-advocacy after ABI entails a process of reclaiming agency whereby individuals seek to understand, question and direct their ongoing care. This is facilitated by neurocognitive recovery, growing capacity and desire and scaffolded supports. Research evaluating approaches for embedding self-advocacy skills early in brain injury rehabilitation is recommended.
Patient or Public Contribution:
Two caregivers with lived experience of supporting a family member with ABI were involved in the design and conduct of this study and contributed to and provided feedback on the manuscript.
Details
- Title
- Reclaiming Agency in Care Decisions and Barriers From the Perspectives of Individuals With Acquired Brain Injury and Their Family Members
- Authors
- Tamara Ownsworth (Corresponding Author) - Griffith UniversityAnnerley Bates (Author) - Griffith UniversityKerrin Watter (Author) - Griffith UniversityClare Morgan (Author) - Griffith UniversityRyan Bell (Author) - Griffith UniversityJanelle Griffin (Author) - Griffith UniversityBen Turner (Author) - Griffith UniversityAreti Kennedy (Author) - Griffith UniversityMelissa Kendall (Author) - Griffith UniversityBelinda Adams (Author) - Griffith UniversityEmily Gibson (Author) - Griffith UniversityTroy Hakala (Author) - Metro South HealthJessie Mitchell (Author) - Griffith University
- Publication details
- Health Expectations, Vol.27(3), pp.1-14
- Publisher
- Wiley-Blackwell Publishing Ltd.
- Date published
- 2024
- DOI
- 10.1111/hex.14109
- ISSN
- 1369-7625; 1369-6513
- PMID
- 38872469
- Copyright note
- © 2024 The Author(s). This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
- Data Availability
- The data that support the findings of this study are available from the corresponding author upon reasonable request.
- Grant note
- This research was funded by the Metro South Health Research Support Scheme as part of a Co‐Funded Collaboration Grant Program with Griffith University. This research project was also funded by The Hopkins Centre – a joint initiative of Division of Rehabilitation, Metro South Health and Menzies Health Institute Queensland, Griffith University. The Motor Accident Insurance Commission provided funding to The Hopkins Centre to support and conduct research activities that aim to improve the treatment and rehabilitation of people injured in motor vehicle crashes.
- Organisation Unit
- School of Health - Occupational Therapy
- Language
- English
- Record Identifier
- 991054798002621
- Output Type
- Journal article
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- Domestic collaboration
- Web Of Science research areas
- Health Care Sciences & Services
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- Public, Environmental & Occupational Health
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