Accepted for/Published in: Journal of Participatory Medicine
Date Submitted: Jun 30, 2019
Open Peer Review Period: Jul 1, 2019 - Aug 26, 2019
Date Accepted: Oct 18, 2019
(closed for review but you can still tweet)
Informational Practices of Post-acute Brain Injury Patients During Personal Recovery: A Qualitative Study
The effects of brain injury, a structural damage or physiological disruption of brain function, last far beyond initial clinical treatment. Self-tracking and management technologies have potential to help individuals experiencing brain injury in their personal recovery – functioning at their best despite ongoing symptoms of illness. However, current self-tracking technologies may be unsuited for measuring the interconnected, non-linear ways in which brain injury manifests.
This study aims to investigate the (1) current informational practices and sensemaking processes used by post-acute brain injury patients during personal recovery and (2) potential role of quality of life instruments in improving patient awareness of brain injury recovery, advocacy, and involvement in care used outside clinical context. Our objective is to explore means of improving awareness through reflection that lead to compensatory strategies by anticipating or recognizing the occurrence of a problem caused by impairment.
We conducted a qualitative study and used essentialist/realist thematic analysis to analyze the data collected through semi-structured interviews and questionnaires, two weeks of structured data collection using brain injury specific health related quality of life (HRQoL) instrument, quality of life after brain injury (QoLIBRI), and final interviews.
Informational practices of people with brain injury involve data collection, data synthesis, and obtaining and applying insights to their lifestyles. Participants collected data through structured tools such as spreadsheets, wearable devices, etc. but switched to unstructured tools such as journals, blogs etc. as changes in overall progress became more qualitative in nature. Although data collection helped participants summarize their progress better, lack of a conceptual understanding made it challenging to know what to monitor or communicate with clinicians. QoLIBRI served as an education tool in this scenario but was inadequate in facilitating reflection and sensemaking.
Individuals with post-acute brain injury found the lack of conceptual understanding of recovery and tools for making sense of their health data as major impediments for tracking and being aware of their personal recovery. There is an urgent need for tools that focus on the holistic nature of recovery and improve the understanding of brain injury for all stakeholders involved through patient-generated health data.
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