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Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life.

ABSTRACT: The objective of this qualitative study was to examine how family caregivers of individuals with traumatic brain injury (TBI) describe their quality of life in the context of their caregiving role. Fifty-two caregivers of adults with moderate or severe TBI (n?=?31 parents, n?=?21 partners/spouses; 77% female; mean age?=?57.96 years, range?=?34-78 years) were recruited from three data collection sites to participate in focus groups. Thematic content analysis was used to identify two main meta-themes: Caregiver Role Demands and Changes in Person with TBI. Prominent sub-themes indicated that caregivers are (1) overburdened with responsibilities, (2) lack personal time and time for self-care, (3) feel that their life is interrupted or lost, (4) grieve the loss of the person with TBI, and (5) endorse anger, guilt, anxiety, and sadness. Caregivers identified a number of service needs. A number of sub-themes were perceived differently by partner versus parent caregivers. The day-to-day responsibilities of being a caregiver as well as the changes in the person with the TBI present a variety of challenges and sources of distress for caregivers. Although services that address instrumental as well as emotional needs of caregivers may benefit caregivers in general, the service needs of parent and partner caregivers may differ.

SUBMITTER: Kratz AL

PROVIDER: S-EPMC4673040 | biostudies-literature | 2017 Jan

REPOSITORIES: biostudies-literature

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Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life.

Kratz Anna L AL Sander Angelle M AM Brickell Tracey A TA Lange Rael T RT Carlozzi Noelle E NE

Neuropsychological rehabilitation 20150608 1

The objective of this qualitative study was to examine how family caregivers of individuals with traumatic brain injury (TBI) describe their quality of life in the context of their caregiving role. Fifty-two caregivers of adults with moderate or severe TBI (n = 31 parents, n = 21 partners/spouses; 77% female; mean age = 57.96 years, range = 34-78 years) were recruited from three data collection sites to participate in focus groups. Thematic content analysis was used to identify two main meta-the ...[more]

PMID: 26052805

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Project description:ObjectivesTo understand the factor structure of health-related quality of life specific to caregivers of people living with traumatic brain injury (TBI).DesignProspective, cross-sectional data collection.SettingThree TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility.ParticipantsCaregivers (N=558) of people who have sustained a TBI (344 caregivers of civilians and 214 caregivers of service members or veterans; 85% women; 58% spouses; mean age, 46.12±14.07y) who have provided care for an average of 5.82±5.40 years.InterventionsNot applicable.Main outcomes measuresThe Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) measurement system including 10 Patient-Reported Outcomes Measurement Information System item banks (anger, anxiety, depression, social isolation, sleep disturbance, fatigue, ability to participate in social roles and activities, satisfaction with social roles and activities, emotional support, informational support) and 5 TBI-CareQOL banks (feelings of loss-self, feelings of loss-person with TBI, feeling trapped, caregiver-specific anxiety, caregiver strain).ResultsConfirmatory factor analysis model fit indices were compared for 14 empirically derived and 5 theoretically derived models. Confirmatory factor analysis results indicated that the best model fit was for a 6-factor model with dimensions that included mental health, social support, social participation, social isolation, physical health, and caregiver emotion.ConclusionsResults indicated that a 6-factor model provided the best model fit for health-related quality of life in caregivers of individuals with TBI. These results have utility for both research and clinical applications. Establishing the TBI-CareQOL's factor structure provides preliminary evidence of the measurement system's construct validity, helps inform the selection of measures for specific research or clinical interventions, and informs the development of composite scores.

Project description:Background Traumatic brain injury (TBI) commonly causes death and disability that can result in productivity loss and economic burden. The health-related quality of life (HRQoL) has been measured in patients suffering from TBI, both in clinical and socioeconomic perspectives. The study aimed to assess the HRQoL in patients following TBI using the European quality of life measure-5 domain-5 level (EQ-5D-5L) questionnaire and develop models for predicting the EQ-5D-5L index score in patients with TBI. Method A cross-sectional study was performed with 193 TBI patients who had completed the EQ-5D-5L questionnaire. The clinical characteristics, Glasgow coma scale (GCS) score, treatment, and Glasgow outcome scale (GOS) were collected. The total data was divided into training data (80%) and testing data (20%); hence, the factors affecting the EQ-5D-5L index scores were used to develop the predictive model with linear and nonlinear regression. The performances of the predictive models were estimated with the adjusted coefficient of determination (R 2 ) and the root mean square error (RMSE). Results A good recovery was found at 96.4%, while 2.1% displayed an unfavorable outcome. Moreover, the mean EQ-5D-5L index scores were 0.91558 (standard deviation [SD] 1.09639). GCS score, pupillary light reflex, surgery, and GOS score significantly correlated with the HRQoL scores. The multiple linear regression model had a high adjusted R 2 of 0.6971 and a low RMSE of 0.06701, while the polynomial regression developed a nonlinear model that had the highest adjusted R 2 of 0.6843 and the lowest RMSE of 0.06748. Conclusions A strong positive correlation between the physician-based outcome as GOS and HRQoL was observed. Furthermore, both the linear and nonlinear regression models were acceptable approaches to predict the HRQoL of patients after TBI. There would be limitations for estimating the HRQoL in unconscious or intubated patients. The HRQoL obtained from the predictive models would be an alternative method to resolve this problem.

Project description:Persons who have experienced traumatic brain injury (TBI) may encounter a range of changes in their physical, mental, and cognitive functions as well as high fatigue levels. To gain a comprehensive understanding of the challenges faced by persons after TBI, we conducted multi-domain assessments among community-dwelling persons with a history of TBI and compared them with age- and sex-matched controls from the Northeastern Taiwan Community Medicine Research Cohort between 2019 and 2021. A total of 168 persons with TBI and 672 non-TBI controls were not different in terms of demographics, comorbidities, and physiological features. However, compared with the non-TBI group, the TBI group had a distinct lifestyle that involved increased reliance on analgesics (6.9% vs. 15.0%, respectively; p = 0.001) and sleep aids (p = 0.008), which negatively affected their quality of life. Moreover, they consumed more coffee (p < 0.001), tea (p < 0.001), cigarettes (p = 0.002), and betel nuts (p = 0.032) than did the non-TBI group. Notably, the use of coffee had a positive effect on the quality of life of the TBI group (F = 4.034; p = 0.045). Further, compared with the non-TBI group, the TBI group had increased risks of sarcopenia (p = 0.003), malnutrition (p = 0.003), and anxiety (p = 0.029) and reduced blood levels of vitamin D (29.83 ± 10.39 vs. 24.20 ± 6.59 ng/mL, respectively; p < 0.001). Overall, the TBI group had a reduced health-related quality of life, with significant challenges related to physical health, mental well-being, social interactions, pain management, and fatigue levels. Moreover, the TBI group experienced poorer sleep quality and efficiency than did the non-TBI group. In conclusion, persons who have sustained brain injuries that require comprehensive and holistic care that includes lifestyle modification, mental and physical healthcare plans, and increased long-term support from their communities. ClinicalTrials.gov (identifier: NCT04839796).

Project description:BACKGROUND:Traumatic brain injury (TBI) is the leading cause of death and disability among children and young adults in industrialized countries, but strikingly little is known how patients cope with the long-term consequences of TBI. Thus, the aim of the current study was to elucidate health-related quality of life (HRQoL) and outcome predictors in chronic TBI adults. METHODS:In this cross-sectional study, 439 former patients were invited to report HRQoL up to 10?years after mild, moderate or severe TBI using the QOLIBRI (Quality of Life after Brain Injury) questionnaire. The QOLIBRI total score has a maximum score of 100. A score below 60 indicates an unfavorable outcome with an increased risk of an affective and/or anxiety disorder. Results were correlated with demographics and basic characteristics received from medical records (TBI severity, etiology, age at TBI, age at survey, time elapsed since TBI, and sex) using regression models. Differences were considered significant at p?<? 0.05. RESULTS:From the 439 invited patients, 135 out of 150 in principle eligible patients (90%) completed the questionnaire; 76% were male, and most patients experienced severe TBI due to a traffic-related accident (49%) or a fall (44%). The mean QOLIBRI total score was 65.5 (± 22.6), indicating good HRQoL. Factors for higher level of satisfaction (p?=?0.03; adjusted R2?=?0.1) were autonomy in daily life (p?=?0.03; adjusted R2?=?0.09) and cognition (p?=?0.05; adjusted R2?=?0.05). HRQoL was weakly correlated with initial TBI severity (p?=?0.04; adjusted R2?=?0.02). 36% of patients reported unfavorable HRQoL with increased risk of one (20%) or two (16%) psychiatric disorders. CONCLUSIONS:The majority of chronic TBI patients reported good HRQoL and the initial TBI severity is a slight contributor but not a strong predictor of HRQoL. Autonomy and cognition are decisive factors for satisfied outcome and should be clearly addressed in neurorehabilitation. One third of patients, however, suffer from unsatisfactory outcome with psychiatric sequelae. Thus, an early neuropsychiatric assessment after TBI is necessary and need to be installed in future TBI guidelines.

Project description:ImportanceMany level I trauma center patients experience clinical sequelae at 1 year following traumatic brain injury (TBI). Longer-term outcome data are needed to develop better monitoring and rehabilitation services.ObjectiveTo examine functional recovery, TBI-related symptoms, and quality of life from 1 to 5 years postinjury.Design, setting, and participantsThis cohort study enrolled trauma patients across 18 US level I trauma centers between 2014 and 2018. Eligible participants were enrolled within 24 hours of injury and followed up to 5 years postinjury. Data were analyzed January 2023.ExposuresMild TBI (mTBI), moderate-severe TBI (msTBI), or orthopedic traumatic controls (OTC).Main outcomes and measuresFunctional independence (Glasgow Outcome Scale-Extended [GOSE] score 5 or higher), complete functional recovery (GOSE score, 8), better (ie, lower) TBI-related symptom burden (Rivermead Post Concussion Symptoms Questionnaire score of 15 or lower), and better (ie, higher) health-related quality of life (Quality of Life After Brain Injury Scale-Overall Scale score 52 or higher); mortality was analyzed as a secondary outcome.ResultsA total 1196 patients were included in analysis (mean [SD] age, 40.8 [16.9] years; 781 [65%] male; 158 [13%] Black, 965 [81%] White). mTBI and OTC groups demonstrated stable, high rates of functional independence (98% to 100% across time). While odds of independence were lower among msTBI survivors, the majority were independent at 1 year (72%), and this proportion increased over time (80% at 5 years; group × year, P = .005; independence per year: odds ratio [OR] for msTBI, 1.28; 95% CI, 1.03-1.58; OR for mTBI, 0.81; 95% CI, 0.64-1.03). For other outcomes, group differences at 1 year remained stable over time (group × year, P ≥ .44). Odds of complete functional recovery remained lower for persons with mTBI vs OTC (OR, 0.39; 95% CI, 0.28-0.56) and lower for msTBI vs mTBI (OR, 0.34; 95% CI, 0.24-0.48). Odds of better TBI-related symptom burden and quality of life were similar for both TBI subgroups and lower than OTCs. Mortality between 1 and 5 years was higher for msTBI (5.5%) than mTBI (1.5%) and OTC (0.7%; P = .02).Conclusions and relevanceIn this cohort study, patients with previous msTBI displayed increased independence over 5 years; msTBI was also associated with increased mortality. These findings, in combination with the persistently elevated rates of unfavorable outcomes in mTBI vs controls imply that more monitoring and rehabilitation are needed for TBI.

Dataset Information

Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life.

Publications

Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life.

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