Narratives of acquired brain injury patients: Their experience of healthcare relationships and medical decision-making

Abstract

Background: Unlike other chronic injuries, acquired brain injuries (ABI's) affect physical, cognitive, social, and emotional functioning. Although collaborative decision-making, high patient engagement, and positive healthcare relationships are generally encouraged within the patient-centred care (PCC) framework, little is known about how ABI patients experience healthcare relationships and decision-making and whether their experiences align with PCC principles.

Method: The purpose of this study was to obtain a better understanding of how mild to moderate ABI patients in the chronic phase of recovery (i.e. minimum 2 years post-injury) experience and navigate healthcare using narrative methods. Participants were 11 Canadian adults living in the community and recruited from their local brain injury association. Semi-structured interviews were conducted and analyzed for their thematic content, structural aspects, and performative aspects in order to get at the meaning-making underlying the narrated stories.

Findings: These participants told one coherent narrative with two main storylines: one in which they positively portrayed their doctors and their healthcare relationships – reporting feeling lost and needing their doctor's help; and another in which they negatively portrayed their doctors and their healthcare relationships – reporting being capable and therefore not needing their doctor's help. Although seemingly contradictory, these two storylines speak to one coherent experience in which capability served as a counter-narrative to what they perceived as a global narrative of being devalued, dismissed and patronized.

Discussion: The implication of how this counter-narrative affects their experience of healthcare is discussed, including implications for why doctors may want to focus on fostering a positive doctor–patient relationship by conveying that they care for and value their ABI patients, and why simple interactions may contribute to this positive relationship.

Keywords:

• Acquired brain injury (ABI)
• Decision-making
• Doctor–patient relationship
• Narrative
• Patient-centred care
• Patient engagement

Disclaimer statement

Contributors M. Wright: Analysis of all raw data, findings and conclusions, writing all sections of manuscript, extensive editing of manuscript. M. Medved: study conceptualization, research material development, recruitment, data collection, close supervision of and contribution to analysis and findings, extensive editing of all sections of the paper, R. Woodgate: study conceptualization, extensive editing of manuscript for content and methodology, results and conclusion review. K. Roger: Study conceptualization, editing of manuscript for content and methodology, results and conclusion review. D. Sullivan: study conceptualization, research material development, recruitment, results and conclusion review.

Conflicts of interest The authors declare no conflict of interest.

Ethics approval Research was approved by University of Manitoba Institutional Research Ethics Board.

Additional information

Funding

This work was supported by the Manitoba Medical Services Foundation.

Notes on contributors

M. Michelle Wright

Michelle Wright, BA (Hons), is a graduate student in the Clinical Psychology program at the University of Manitoba. Her research focuses on how unique populations (brain injury and autism) experience and engage in healthcare.

Maria Medved

Maria Medved, PhD, CPsych, is an Associate Professor of Psychology at the University of Manitoba and a licensed psychologist who has extensive experience in clinical and rehabilitation psychology. Medved has authored multiple articles and book chapters on the experiences and meaning-making processes of patients/families and the impact of traumatic physical events.

Roberta L. Woodgate

Dr Roberta L. Woodgate is a Professor in the Faculty of Health Sciences, University of Manitoba. She holds a Canadian Institutes of Health Research Applied Chair in Reproductive, Child and Youth Health Services and Policy Research.

Kerstin Roger

Dr Kerstin Roger is an Associate Professor in both the Department of Family Social Sciences and the department of Community Health Sciences at the University of Manitoba. Her research focus is on the family and community interfacing with the healthcare and social services.

David Sullivan

Mr David Sullivan is the Executive Director of the Manitoba Brain Injury Association (MBIA). Through the MBIA he works to provide support and education to, as well as advocate for survivors of brain injury and their families.