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Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study.

ABSTRACT: BACKGROUND:The effects of brain injury, structural damage, or the physiological disruption of brain function last far beyond initial clinical treatment. Self-tracking and management technologies have the potential to help individuals experiencing brain injury in their personal recovery-helping them to function at their best despite ongoing symptoms of illness. However, current self-tracking technologies may be unsuited for measuring the interconnected, nonlinear ways in which brain injury manifests. OBJECTIVE:This study aimed to investigate (1) the current informational practices and sensemaking processes used by postacute brain injury patients during personal recovery and (2) the potential role of quality-of-life instruments in improving patient awareness of brain injury recovery, advocacy, and involvement in care used outside the clinical context. Our objective was to explore the means of improving awareness through reflection that leads to compensatory strategies by anticipating or recognizing the occurrence of a problem caused by impairment. METHODS:We conducted a qualitative study and used essentialist or realist thematic analysis to analyze the data collected through semistructured interviews and questionnaires, 2 weeks of structured data collection using brain injury-specific health-related quality of life instrument, quality of life after brain injury (QoLIBRI), and final interviews. RESULTS:Informational practices of people with brain injury involve data collection, data synthesis, and obtaining and applying the insights to their lifestyles. Participants collected data through structured tools such as spreadsheets and wearable devices but switched to unstructured tools such as journals and blogs as changes in overall progress became more qualitative in nature. Although data collection helped participants summarize their progress better, the lack of 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. CONCLUSIONS:Individuals with postacute 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 a better framework for recovery and a process model for choosing patient-generated health data tools that focus on the holistic nature of recovery and improve the understanding of brain injury for all stakeholders involved throughout recovery.

SUBMITTER: Masterson Y

PROVIDER: S-EPMC7434071 | biostudies-literature | 2019 Nov

REPOSITORIES: biostudies-literature

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Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study.

Masterson Yamini Y Brady Erin E Miller Andrew A

Journal of participatory medicine 20191112 4

<h4>Background</h4>The effects of brain injury, structural damage, or the physiological disruption of brain function last far beyond initial clinical treatment. Self-tracking and management technologies have the potential to help individuals experiencing brain injury in their personal recovery-helping them to function at their best despite ongoing symptoms of illness. However, current self-tracking technologies may be unsuited for measuring the interconnected, nonlinear ways in which brain injur ...[more]

PMID: 33055067

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Project description:ObjectiveTo explore the acceptability of peer mentoring for people with a traumatic brain injury (TBI) in New Zealand.DesignThis is a qualitative descriptive study exploring the experiences reported by mentees and mentors taking part in a feasibility study of peer mentoring. Interviews with five mentees and six mentors were carried out. Data were analysed using conventional content analysis.SettingThe first mentoring session took place predischarge from the rehabilitation unit. The remaining five sessions took place in mentees' homes or community as preferred.ParticipantsTwelve people with TBI took part: six mentees (with moderate to severe TBI; aged 18-46) paired with six mentors (moderate to severe TBI >12 months previously; aged 21-59). Pairing occurred before mentee discharge from postacute inpatient brain injury rehabilitation. Mentors had been discharged from rehabilitation following a TBI between 1 and 5 years previously.InterventionThe peer mentoring programme consisted of up to six face-to-face sessions between a mentee and a mentor over a 6-month period. The sessions focused on building rapport, exploring hopes for and supporting participation after discharge through further meetings and supported community activities.ResultsData were synthesised into one overarching theme: making sense of recovery. This occurred through the sharing of experiences and stories; was pivotal to the mentoring relationship; and appeared to benefit both mentees and mentors. Mentors were perceived as valued experts because of their personal experience of injury and recovery, and could provide support in ways that were different from that provided by clinicians or family members. Mentors required support to manage the uncertainties inherent in the role.ConclusionsThe insight mentors developed through their own lived experience established them as a trusted and credible source of hope and support for people re-engaging in the community post-TBI. These findings indicate the potential for mentoring to result in positive outcomes.

Project description:Integrity of the default mode network (DMN) is believed to be essential for human consciousness. However, the effects of acute severe traumatic brain injury (TBI) on DMN functional connectivity are poorly understood. Furthermore, the temporal dynamics of DMN reemergence during recovery of consciousness have not been studied longitudinally in patients with acute severe TBI. We performed resting-state functional magnetic resonance imaging (rs-fMRI) to measure DMN connectivity in 17 patients admitted to the intensive care unit (ICU) with acute severe TBI and in 16 healthy control subjects. Eight patients returned for follow-up rs-fMRI and behavioral assessment six months post-injury. At each time point, we analyzed DMN connectivity by measuring intra-network correlations (i.e. positive correlations between DMN nodes) and inter-network anticorrelations (i.e. negative correlations between the DMN and other resting-state networks). All patients were comatose upon arrival to the ICU and had a disorder of consciousness (DoC) at the time of acute rs-fMRI (9.2 ± 4.6 days post-injury): 2 coma, 4 unresponsive wakefulness syndrome, 7 minimally conscious state, and 4 post-traumatic confusional state. We found that, while DMN anticorrelations were absent in patients with acute DoC, patients who recovered from coma to a minimally conscious or confusional state while in the ICU showed partially preserved DMN correlations. Patients who remained in coma or unresponsive wakefulness syndrome in the ICU showed no DMN correlations. All eight patients assessed longitudinally recovered beyond the confusional state by 6 months post-injury and showed normal DMN correlations and anticorrelations, indistinguishable from those of healthy subjects. Collectively, these findings suggest that recovery of consciousness after acute severe TBI is associated with partial preservation of DMN correlations in the ICU, followed by long-term normalization of DMN correlations and anticorrelations. Both intra-network DMN correlations and inter-network DMN anticorrelations may be necessary for full recovery of consciousness after acute severe TBI.

Project description:ImportanceOne traumatic brain injury (TBI) increases the risk of subsequent TBIs. Research on longitudinal outcomes of civilian repetitive TBIs is limited.ObjectiveTo investigate associations between sustaining 1 or more TBIs (ie, postindex TBIs) after study enrollment (ie, index TBIs) and multidimensional outcomes at 1 year and 3 to 7 years.Design, setting, and participantsThis cohort study included participants presenting to emergency departments enrolled within 24 hours of TBI in the prospective, 18-center Transforming Research and Clinical Knowledge in Traumatic Brain Injury (TRACK-TBI) study (enrollment years, February 2014 to July 2020). Participants who completed outcome assessments at 1 year and 3 to 7 years were included. Data were analyzed from September 2022 to August 2023.ExposuresPostindex TBI(s).Main outcomes and measuresDemographic and clinical factors, prior TBI (ie, preindex TBI), and functional (Glasgow Outcome Scale-Extended [GOSE]), postconcussive (Rivermead Post-Concussion Symptoms Questionnaire [RPQ]), psychological distress (Brief Symptom Inventory-18 [BSI-18]), depressive (Patient Health Questionnaire-9 [PHQ-9]), posttraumatic stress disorder (PTSD; PTSD Checklist for DSM-5 [PCL-5]), and health-related quality-of-life (Quality of Life After Brain Injury-Overall Scale [QOLIBRI-OS]) outcomes were assessed. Adjusted mean differences (aMDs) and adjusted relative risks are reported with 95% CIs.ResultsOf 2417 TRACK-TBI participants, 1572 completed the outcomes assessment at 1 year (1049 [66.7%] male; mean [SD] age, 41.6 [17.5] years) and 1084 completed the outcomes assessment at 3 to 7 years (714 [65.9%] male; mean [SD] age, 40.6 [17.0] years). At 1 year, a total of 60 participants (4%) were Asian, 255 (16%) were Black, 1213 (77%) were White, 39 (2%) were another race, and 5 (0.3%) had unknown race. At 3 to 7 years, 39 (4%) were Asian, 149 (14%) were Black, 868 (80%) were White, 26 (2%) had another race, and 2 (0.2%) had unknown race. A total of 50 (3.2%) and 132 (12.2%) reported 1 or more postindex TBIs at 1 year and 3 to 7 years, respectively. Risk factors for postindex TBI were psychiatric history, preindex TBI, and extracranial injury severity. At 1 year, compared with those without postindex TBI, participants with postindex TBI had worse functional recovery (GOSE score of 8: adjusted relative risk, 0.57; 95% CI, 0.34-0.96) and health-related quality of life (QOLIBRI-OS: aMD, -15.9; 95% CI, -22.6 to -9.1), and greater postconcussive symptoms (RPQ: aMD, 8.1; 95% CI, 4.2-11.9), psychological distress symptoms (BSI-18: aMD, 5.3; 95% CI, 2.1-8.6), depression symptoms (PHQ-9: aMD, 3.0; 95% CI, 1.5-4.4), and PTSD symptoms (PCL-5: aMD, 7.8; 95% CI, 3.2-12.4). At 3 to 7 years, these associations remained statistically significant. Multiple (2 or more) postindex TBIs were associated with poorer outcomes across all domains.Conclusions and relevanceIn this cohort study of patients with acute TBI, postindex TBI was associated with worse symptomatology across outcome domains at 1 year and 3 to 7 years postinjury, and there was a dose-dependent response with multiple postindex TBIs. These results underscore the critical need to provide TBI prevention, education, counseling, and follow-up care to at-risk patients.

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Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study.

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Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study.

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