This cohort study assesses caregiver burden among family caregivers of geriatric trauma patients up to 3 months after they were discharged from hospitals.
Key Points
Question
What is the prevalence of caregiver burden among family caregivers of geriatric trauma patients discharged from hospitals?
Findings
This cohort study found that nearly a third of caregivers experienced high rates of caregiver burden up to 3 months after discharge; caregivers with low self-efficacy and preparedness for caregiving had higher odds of caregiver burden.
Meaning
Supporting caregivers’ self-efficacy and preparedness before patient discharge is a promising target for reducing caregiver burden among caregivers of geriatric trauma patients.
Abstract
Importance
Caregiver burden, characterized by psychological distress and physical morbidity, affects more than 50 million family caregivers of older adults in the United States. Risk factors for caregiver burden among caregivers of older trauma patients have not been well characterized.
Objective
To characterize postdischarge caregiver burden among caregivers of older trauma patients and identify targets that can inform interventions to improve their experience.
Design, Setting, and Participants
This study used a repeated cross-sectional design. Participants were family caregivers for adults 65 years or older with traumatic injury who were discharged from 1 of 2 level I trauma centers. Telephone interviews were conducted at 1 month and 3 months postdischarge with family caregivers (identified by the patient as family or friends who provided unpaid care). Admissions occurred between December 2019 and May 2021, and data were analyzed from June 2021 to May 2022.
Exposure
Hospital admission for geriatric trauma.
Main Outcome and Measures
High caregiver burden was defined by a score of 17 or higher on the 12-item Zarit Burden Interview. Caregiver self-efficacy and preparedness for caregiving were assessed via the Revised Scale for Caregiving Self-Efficacy and Preparedness for Caregiving Scale, respectively. Associations between caregiver self-efficacy, preparedness for caregiving, and caregiver burden were tested via mixed-effect logistic regression.
Results
There were 154 family caregivers enrolled in the study. Their mean (SD) age was 60.6 (13.0) years (range, 18-92 years), 108 of 154 were female (70.6%). The proportion of caregivers experiencing high burden (Zarit Burden Interview score ≥17) was unchanged over time (1 month, 38 caregivers [30.9%]; 3 months, 37 caregivers [31.4%]). Participants with lower caregiver self-efficacy and preparedness for caregiving were more likely to experience greater caregiver burden (odds ratio [OR], 7.79; 95% CI, 2.54-23.82; P < .001; and OR, 5.76; 95% CI, 1.86-17.88; P = .003, respectively).
Conclusion and Relevance
This study found that nearly a third of family caregivers of older trauma patients experience high caregiver burden up to 3 months after the patients’ discharge. Targeted interventions to increase caregiver self-efficacy and preparedness may reduce caregiver burden in geriatric trauma.
Introduction
More than 1 million older adults (age ≥65 years) are hospitalized for traumatic injury each year, and geriatric trauma accounts for more than $40 billion in health care costs.1 Older injured adults are often frail or seriously ill with high illness burden before their trauma admission, which leads to poor outcomes, including high rates of functional disability, health care use, and high mortality.2,3 After discharge, these patients experience functional decline and high rates of institutionalization and hospital readmissions, which in turn increase their dependence on family caregivers.4
Caregiver burden, characterized by psychological distress and physical morbidity, affects more than 50 million unpaid family caregivers of older adults nationally.5 Family caregivers assist with activities of daily living, medical care, and financial and medical decisions and play a substantial and crucial role in the health care workforce for older people in the United States.6 While many caregivers report high satisfaction in their role, caregiving is associated with various adverse outcomes, including caregiver burden, depression, anxiety, and social isolation.7,8,9,10,11,12 Caregiver burden is associated with worsened health and quality of life for caregivers as well as greater health care utilization for caregivers and care recipients.13,14,15 Thus, improving the caregiver experience is critical for providing high-value care for seriously ill older adults and has significant policy implications in our aging society.
Family caregiver burden after geriatric trauma has not been thoroughly studied. While there are guidelines and caregiver interventions tailored to illnesses where patient disability and caregiver burden increase over the disease course (eg, Dementia Care and Caregiver Support from the Center to Advance Palliative Care,16 randomized clinical trials of dementia family caregiver interventions17), there are no existing evidence-based interventions to reduce caregiver burden in geriatric trauma. Caregiving research focused on oncology and dementia demonstrates that caregiver self-efficacy and caregiver preparedness are key constructs that modify caregiver outcomes because of their influence on the psychosocial experiences of providing care (eg, emotional distress, resilience, social support).18,19 However, associations between such modifiable factors and caregiver burden in geriatric trauma is unknown.
To fill this knowledge gap, we conducted a longitudinal observational cohort study of family caregivers of older trauma patients to (1) measure postdischarge caregiver burden (up to 3 months) and (2) gauge associations between caregiver self-efficacy and preparedness and caregiver burden. We hypothesized that caregiver self-efficacy and preparedness for caregiving would be independently associated with postdischarge caregiver burden.
Methods
Study Design and Setting
This prospective observational cohort study was performed at 2 level I trauma centers in Boston between December 2019 and May 2021. A repeated cross-sectional design was used to follow up family caregivers at 1 month and 3 months after their family member’s discharge from the hospital. This study was approved by the Mass General Brigham institutional review board. Data were analyzed from June 2021 to May 2022. We followed the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) reporting guideline.20
Study Participants and Recruitment
Family caregiver was defined as an unpaid family member, friend, or neighbor who assists an individual with an acute or chronic condition in activities of daily living, finances, emotional support, medical care, medical decision-making, and transportation.21 Based on a sensitivity power analysis to calculate sufficient power (80%) to detect a change in the odds of high caregiver burden for every 8-point decrease in self-efficacy scale (half a standard deviation), a target sample size of 100 caregivers was determined for this study. Convenience sampling was used to recruit individuals meeting the following criteria: family caregivers of adults 65 years or older admitted with qualifying traumatic injury (eTable 1 in Supplement 1), caregiver age 18 years or older, and English fluency. All others were excluded. Multiple caregivers per patient could enroll in the study.
Identification of eligible study participants was conducted in 2 steps. First, trained researchers reviewed trauma daily admission lists in the electronic medical record to identify geriatric older adults with qualifying traumatic injury, followed by a medical record review to collect patients’ demographic and clinical information. Second, caregivers were identified through patients’ self-report. From December 2019 to March 2020, researchers visited and recruited patients during an inpatient hospital stay. However, in-person recruitment activities were suspended on March 12, 2020, through May 14, 2020, because of the COVID-19 pandemic. Recruitment activities resumed by telephone on May 14, 2020. Researchers completed additional steps to identify caregivers. First, they mailed recruitment letters and study information sheets to all eligible patients on the day of their discharge. Then, within 1 to 4 weeks after discharge, researchers called patients to identify caregivers who might be interested in participating in the study and provide verbal agreement for their caregiver to be approached. Caregivers were contacted and provided verbal consent by telephone.
Source and Data Collection
The electronic medical record was used to collect patients’ demographic information, comorbidities, hospital stay characteristics, and readmissions. Patients’ injury characteristics and injury severity scores were obtained through trauma registries. Caregiver demographic data, details about caregiving, resources, and caregiver outcomes were collected through caregiver telephone surveys. We collected race and ethnicity data for this study given that previous studies have shown racial and ethnic differences in caregiving hours, responsibilities, and caregiver burden.22,23,24
Researchers conducted 1-on-1, 30-minute caregiver surveys at 1 month and 3 months postdischarge. Caregiver surveys consisted of the following 8 sections: (1) 12-item Short Form Health Survey25 (SF-12), as a caregiver’s proxy report of patient health status; (2) Katz Index of Independence in Activities of Daily Living (Katz ADL), as a caregiver’s proxy report of patient functional status26; (3) PROMIS Global Physical and Health27; (4) Preparedness for Caregiving Scale28; (5) Scale for Caregiving Self-Efficacy29; (6) the Human Connection Scale30,31; (7) 12-item Zarit Burden Interview (ZBI-12)32; (8) other caregiver information (demographic data, caregiving activities, and intensity of caregiving). All caregivers received a $20 gift card for participation. All patient and caregiver data were entered into a secure database using REDCap (Research Electronic Data Capture).33
Outcomes
Our primary outcome of interest was caregiver burden measured using the ZBI-12, a 12-item caregiver-reported questionnaire that assesses burden in 2 domains (ie, personal strain and role strain).32 The ZBI-12 summative score ranges from 0 to 48; a higher score indicates higher burden (≥10 indicated burden and ≥17 indicates high burden).34
Covariates
Patient demographic and clinical information included age, sex (female or male), race and ethnicity, marital status (single, married, separated/divorced), mechanism of injury (fall, major vehicle collision, or other), admission to the intensive care unit (ICU, yes or no), length of ICU stay (days), discharge disposition (home, home with services, long-term acute care facility, rehabilitation facility, or skilled nursing), 30-day and 14-week readmission rates (yes/no), and injury severity (Injury Severity Score [ISS] range 0-75, with higher number indicating greater severity; >16 is severe trauma).35 Race and ethnicity data for patients were collected from the electronic medical record, which documented either patient-reported or clinician-reported responses from the following categories specified by the institution: American Indian or Alaska Native, Asian, Black/African American, Native Hawaiian or Other Pacific Islander, Hispanic, Latino, or Spanish origin; White; other, for descriptions that did not fit the categories; or unknown, if not included in the record. Patients’ physical and mental health well-being and level of independence with activities of daily living were measured by the SF-12 version 225 and the Katz ADL,26 respectively, through caregiver-proxy reports. For the purposes of our study, the Katz score was dichotomized (0 for independent, 1 for dependent).
Caregiver demographic variables were the same as patient variables described above. Race and ethnicity data for caregivers were collected through caregivers’ self-report during the telephone interview. Caregivers described their race and ethnicity based on the following specified categories: American Indian or Alaska Native, Asian, Black/African American, Native Hawaiian or Other Pacific Islander, Hispanic, Latino, or Spanish origin; White; or other, for descriptions that did not fit the categories. Other characteristics included employment status (retired, full-time, part-time, self-employed, homemaker, or unemployed/student/unable to work), relationship to patient (spouse, child, friend, sibling/in-law, or other), living with the patient (yes/no), daily interaction with patient (yes/no), caregiver hours (prior to injury, immediately after discharge, ~3 months postdischarge), and prior caregiving experience (assisted with daily activities, finances, or medical care).
Independent Variables of Interest
Independent variables included therapeutic alliance (a sense of mutual understanding, caring, and trust with clinicians),30 self-efficacy in caregiving (self-perception),29 and preparedness for caregiving (self-perceived readiness for caregiving).36,37 Therapeutic alliance for caregiver and clinician was assessed via the Human Connection Scale,30 a 15-item caregiver-reported questionnaire (total score range, 15-60; higher indicates better alliance).
The revised Scale for Caregiving Self-Efficacy, a 15-item caregiver-reported questionnaire, was used to assess caregivers’ perception about their self-efficacy in caregiving.29 The questionnaire consists of 3 domains (5 items per domain: obtaining respite, responding to disruptive behavior, controlling upsetting thoughts about caregiving) and uses a numeric scale ranging from 0% (no confidence) to 100% (absolute confidence). Specifically, the Obtaining Respite domain reflects a caregiver’s confidence in asking for support from others (eg, “How confident are you that you can ask a friend/family member to stay with the patient for a day when you feel the need for a break?”). The domain Responding to Disruptive Behavior assesses a caregiver’s confidence in effectively responding to the patient’s behaviors (eg, “When the patient complains to you about how you’re treating him/her, how confident are you that you can respond without arguing back?”). The domain Controlling Upsetting Thoughts About Caregiving gauges a caregiver’s confidence in managing negative emotions associated with caregiving (eg, “How confident are you that you can control thinking about unpleasant aspects of taking care of the patient?”). The domain and total scores all ranged from 0 to 100, with a higher score indicating greater caregiving self-efficacy.
The Preparedness for Caregiving Scale is an 8-item caregiver-reported questionnaire measuring their perception about preparedness for caregiving in multiple domains (providing physical care and emotional support, setting up in-home services, and dealing with stress).36,37 The questionnaire uses a 5-point rating scale ranging from 0 (not at all prepared) to 4 (very well prepared). The total score is the sum of all items, ranging from 0 to 32, with a higher score indicating a higher degree of preparedness for caregiving.
Statistical Approach
Caregiver and patient demographic information was reported using descriptive statistics. Mean and SD (normally distributed) or median and IQR (nonnormally distributed) were used for continuous variables, and frequencies and percentages were used for categorical variables.
Associations between overall caregiver self-efficacy, each domain of caregiver self-efficacy and preparedness, and high caregiver burden (binary, 1 = high burden vs 0 = low/moderate burden) were tested using mixed-effect logistic regression to account for clustering of the multiple measurements within each subject. The mixed model was not conducted for therapeutic alliance because of the large amount of missing data for the Human Connection Scale, which became not applicable to caregivers, who had limited interactions with clinicians when visitor restrictions were implemented during the pandemic. We performed 4 models: 1 unadjusted model (without adjusting covariates) and 3 adjusted models: the caregiver model, adjusted for caregiver characteristics; the patient model, adjusted for patient characteristics, and the patient and caregiver model, adjusted for both patient and caregiver characteristics. All 4 models incorporated time as a fixed effect at the caregiver level.
Sensitivity analyses were conducted to compare whether some additional factors (discharge location, readmission status, caregiver age) were associated with caregiver burden. The Wilcoxon test was used to compare the median of ZBI score and the 2-sample z test was used to compare the proportion of high caregiver burden between groups. Mixed-effect logistic regressions were conducted in SAS version 9.4; all other analyses were performed in R version 4.1.2. P < .05 was considered statistically significant.
Results
Participants
Among 658 eligible patients, 358 allowed study staff to contact their caregivers. Among 375 eligible caregivers (45 patients identified >1 caregiver), 154 caregivers enrolled and completed the 1-month postdischarge surveys and/or 3-month postdischarge surveys. The overall study enrollment rate was 41.1% (Figure). Among the 154 participants, 88 (57.1%) completed surveys at both time points.
Figure. Participant Eligibility and Enrollment.
a45 Patients identified more than 1 caregiver.
Of 140 patients included in this study, the mean (SD) age was 79.6 (8.7) years, and 82 (58.6%) were female (Table 1). Most were White (127 patients; 90.7%), and half (70; 50.0%) were married. The most common cause of injury was fall (114; 81.4%), and nearly one-third (41; 31.5%) had severe trauma. The most common injury was rib fractures (69; 49.3%), followed by spinal fractures (52; 37.1%). Approximately half (71; 50.7%) had an ICU admission with a median ICU length of stay of 3 days. Most (75; 53.2%) were discharged to nonhome settings (ie, long-term acute care facility, rehab facility, and skilled nursing). A quarter of patients (35; 25%) were readmitted to a hospital within 14 weeks of discharge.
Table 1. Patient Characteristics (n = 140).
| Characteristic | No. (%) |
|---|---|
| Age, mean (SD), y | 79.6 (8.7) |
| Sex | |
| Female | 82 (58.6) |
| Male | 58 (41.4) |
| Race and ethnicitya | |
| Asian; Black/African American; and/or Hispanic, Latino, or Spanish origin | 14 (10.0) |
| White | 127 (90.7) |
| Other/unknown | 4 (2.9) |
| Marital status | |
| Single | 14 (10.0) |
| Married | 70 (50.0) |
| Separated/divorced | 15 (10.7) |
| Widowed | 41 (29.3) |
| Injury Severity Scoreb | |
| Mild (0-8) | 29 (22.3) |
| Moderate (9-15) | 60 (46.2) |
| Severe/profound (≥16) | 41 (31.5) |
| Mechanism of injury | |
| Fall | 114 (81.4) |
| Major vehicle collision | 20 (14.3) |
| Other | 6 (4.3) |
| ICU admission | 71 (50.7) |
| Time in ICU, median (IQR), dc | 3.0 (2.0) |
| Discharge disposition | |
| Home | 16 (11.4) |
| Home with services | 49 (35.0) |
| Long-term acute care facility | 4 (2.9) |
| Rehab facility | 33 (23.6) |
| Skilled nursing facility | 37 (26.4) |
| Other | 1 (0.7) |
| Main injury | |
| Rib fractures | 69 (49.3) |
| Spinal fractures | 52 (37.1) |
| TBI-related injuries | 49 (35.0) |
| Hip fracture | 10 (7.1) |
| Pelvic fracture | 9 (6.4) |
| Extremity fractures/breaks | 46 (32.9) |
| Organ injuries | 15 (10.7) |
| Other | 58 (41.4) |
| 30-d Readmission | 23 (16.4) |
| 14-wk Readmission | 35 (25.0) |
Abbreviations: ICU, intensive care unit; TBI, traumatic brain injury.
Race and ethnicity were collected from the electronic medical record, which documented either patient-reported or clinician-reported responses from categories specified by the institution; “other” indicates descriptions that did not fit the categories. Some groups were combined for reporting to prevent identifiability because of small numbers.
Missing data for 10 patients.
Only among 70 patients with ICU admission.
The mean (SD) age of caregiver participants was 60.6 (3.0) years, most were female (108 of 153 participants; 70.6%) and White (135; 87.7%). Caregivers were most commonly the patient’s child (77; 50.7%) or spouse (50; 32.9%); nearly equal numbers were retired (54; 35.3%) or holding a full-time job (52; 34.0%); and nearly half lived with the patient (73; 47.7%) (Table 2). There were few changes in patient physical and mental well-being or functional status between 1 and 3 months after hospital discharge (Table 3).
Table 2. Caregiver Characteristics (n = 154).
| Characteristic | No. (%) |
|---|---|
| Age, mean (SD), ya | 60.6 (13.0) |
| ≥65 y | 67 (43.8) |
| Sexa | |
| Female | 108 (70.6) |
| Male | 45 (29.4) |
| Race and ethnicityb | |
| Asian or Black/African Americanc | 10 (6.5) |
| Hispanic, Latino, or Spanish origina | 10 (6.5) |
| White | 135 (87.7) |
| Other/unknown | 9 (5.8) |
| Employment statusa | |
| Retired | 54 (35.3) |
| Full-time | 52 (34.0) |
| Part-time | 15 (9.8) |
| Self-employed | 15 (9.8) |
| Homemaker | 5 (3.3) |
| Unemployed/student/unable to work | 12 (7.8) |
| Relationship to patientd | |
| Spouse | 50 (32.9) |
| Child | 77 (50.7) |
| Friend | 6 (3.9) |
| Sibling/in-law | 8 (5.3) |
| Other | 11 (7.2) |
| Living with the patienta | 73 (47.7) |
| Daily interaction with patienta | 132 (86.3) |
| Prior caregiving experiencee | |
| Help with daily activities | 83 (67.5) |
| Help financially | 57 (46.3) |
| Help with medical care | 94 (76.4) |
Missing data for 1 caregiver.
Race and ethnicity data were collected through caregivers’ self-report during the telephone interview; “other” indicates descriptions that did not fit the preceding categories.
Groups were combined for reporting to prevent identifiability because of small numbers.
Missing for 2 caregivers.
Only collected from 123 caregivers who completed 1-month postdischarge interview.
Table 3. Family Caregiving Outcomes at 1 Month and 3 Months After Hospital Discharge.
| Measure | Mean (SD) | |
|---|---|---|
| 1 mo Postdischarge (n = 123) | 3 mo Postdischarge (n = 118)a | |
| Patients b | ||
| SF-12 physical component summaryc | 29.5 (8.6) | 32.8 (10.7) |
| SF-12 mental component summaryc | 42.2 (13.4) | 46.6 (12.1) |
| Katz ADL score, median (IQR)d | 4 (2-6) | 6 (4-6) |
| Caregivers | ||
| ZBI-12 score, median (IQR) | 12.0 (5.5-18.0) | 11.0 (4.5-19.0) |
| ≥17, No. (%) | 38 (30.9) | 37 (31.4) |
| Global physical score | 54.1 (8.0) | 53.1 (7.6) |
| Global mental score | 53.0 (8.0) | 51.5 (8.5) |
| Human Connection Scalee | 47.5 (8.4) | 48.1 (8.5) |
| Caregiver self-efficacy, overall | 79.4 (16.2) | 79.8 (14.0) |
| Self-care and obtaining respite | 70.9 (28.1) | 73.7 (23.3) |
| Responding to disruptive patient behaviorsf | 85.1 (17.6) | 83.9 (15.6) |
| Controlling upsetting thoughts about caregivingg | 82.3 (16.6) | 81.6 (17.0) |
| Preparedness for Caregiving Scalef | 22.2 (6.1) | 22.2 (5.4) |
| Caregiver time, median (IQR), h/wk | 35.0 (14.0-84.0) | 20.0 (7.0-42.0) |
Abbreviations: ADL, activities of daily living; SF-12, 12-item Short Form Health Survey; ZBI-12, 12-item Zarit Burden Interview.
Among 123 caregivers who completed the 1-month postdischarge surveys, 87 completed the 3-month postdischarge surveys. An additional 31 caregivers were enrolled at 3 months postdischarge and completed surveys, which makes a total of 118 caregivers at 3 months postdischarge.
Caregiver-proxy reported.
Missing data for 8 respondents at 1 month and 6 respondents at 3 months.
Missing data for 3 respondents at 1 month and 2 respondents at 3 months.
Missing data for 32 respondents at 1 month and 30 respondents at 3 months.
Missing data for 1 respondent at 1 month and 1 respondent at 3 months.
Missing data for 1 respondent at 3 months.
The median (IQR) ZBI-12 score at 1 month and 3 months postdischarge was 12.0 (5.5-18.0) and 11.0 (4.5-19.0), respectively. At 1 month, 38 of 123 caregivers (30.9%) reported high burden, and at 3 months, 37 of 118 caregivers (31.4%) had high burden (Table 3). The mean (SD) total score for caregiving self-efficacy at 1 and 3 months postdischarge was 79.4 (16.2) and 79.8 (14.0), respectively. The mean (SD) score for Preparedness for Caregiving Scale was unchanged over time (1 month, 22.2 [6.1]; 3 months, 22.2 [5.4]).
In the patient and caregiver model shown in Table 4, caregivers with lower self-efficacy and preparedness for caregiving were more likely to experience high caregiver burden (odds ratio [OR], 7.79; 95% CI, 2.54-23.82; P < .001; and OR, 5.76; 95% CI, 1.86-17.88; P = .003, respectively). Similar results were found when evaluating the associations between high caregiver burden and caregiver self-efficacy at the domain level (self-care and obtain respite: OR, 4.35; 95% CI, 1.74-10.87; P = .002; responding to disruptive patient behaviors: OR, 4.50; 95% CI, 1.81-11.19; P = .002; controlling upsetting thoughts about caregiving: OR, 8.99, 95% CI, 2.50-32.31, P = .001). Results for unadjusted and adjusted models accounting for only caregiver or patient variables are in eTable 2 in Supplement 1. Sensitivity analyses examining associations between patient factors (ie, readmission, discharge locations) and caregiver factors (ie, age, prior caregiving experience) and caregiver burden and preparedness for caregiving did not show significant differences (eTables 3-8 in Supplement 1).
Table 4. Associations Between High Caregiver Burden and Caregiver Self-Efficacy and Preparedness for Caregiving (Patient and Caregiver Model)a.
| Independent variableb | OR (95% CI)c | P value |
|---|---|---|
| Caregiver self-efficacy, overalld | 7.79 (2.54-23.82) | <.001 |
| Self-care and obtaining respite | 4.35 (1.74-10.87) | .002 |
| Responding to DB | 4.50 (1.81-11.19) | .002 |
| Controlling upsetting thoughts about caregiving | 8.99 (2.50-32.31) | .001 |
| Preparedness for Caregiver Scalee | 5.76 (1.86-17.88) | .003 |
Abbreviations: DB, disruptive patient behaviors; ISS, Injury Severity Score; OR, odds ratio; SFE, self-efficacy; SF-12, 12-item Short Form Health Survey; TBI, traumatic brain injury.
A Zarit Burden Interview score ≥17 indicates high caregiver burden (binary, 1 = high burden vs 0 = low/moderate burden).
All factors were standardized into a z score. The ORs represent per 1 SD increase of each factor.
Mixed-effects logistic regression was used to account for repeated measures over time. The models adjusted time and covariates from caregivers (age, sex, race and ethnicity, caregiver hours, global physical score) and covariates from patients (age, sex, race and ethnicity, marital status, ISS, main injury [multiple vs single], main injury [TBI vs non-TBI], discharge location, readmission within 30 days, SF-12 physical component summary, SF-12 mental component summary, activities of daily living score).
Revised Scale for Caregiving Self-efficacy measures the self-efficacy of caregivers in 3 domains: self-care and obtaining respite, responding to DB, and controlling upsetting thoughts about caregiving (15-items rated 0-100, higher number indicates better SFE). SD = 25.8 for SFE-obtaining respite, SD = 16.7 for SFE-DB, SD = 16.8 for SFE-controlling upsetting thoughts, and SD = 15.7 for overall SFE.
Preparedness for Caregiving Scale measures perceived readiness across multiple domains of caregiving (8-items with 5-point Likert scale, score 0-32, higher number indicates better prepared). SD = 5.8.
Discussion
This prospective, observational cohort study demonstrates that family caregivers of older injured adults experience substantial caregiver burden up to 3 months after hospital discharge and that high levels of burden are sustained over time. Furthermore, our findings show that modifiable factors, such as caregiver self-efficacy and preparedness for caregiving, are independently associated with caregiver burden. Together, these findings have important implications for developing tailored interventions to address the unique needs of caregivers of geriatric patients after trauma.
Our study identified caregiving patterns specific to geriatric trauma. First, our cohort reported higher caregiver burden compared with other studies of caregivers for other seriously ill patients (eg, a mean ZBI score in heart failure [9.6],38 lung cancer [11.1],38 and advanced cancer [10.4]39). One possible explanation for these findings is that injured older adults experience a relatively sudden decline in their functional status, leaving caregivers with an uncertain future and little or no time to develop a sense of confidence in their abilities to fulfil caregiving duties.40 Second, as compared with caregivers for patients with other illnesses,5 older age and longer caregiving hours distinguish our caregiver cohort from others. As in previous studies,41,42,43,44 we found that higher caregiver hours were associated with higher rates of caregiver burden. Caregiver support interventions such as coping strategies45 and respite care46,47 have been successful in lowering caregiver burden in other groups and may serve as models for geriatric trauma care.
Despite its role in improving caregiver outcomes, caregiver self-efficacy has not been a target for interventions to address caregiver burden after geriatric trauma. In our caregiver cohort, there were no substantial changes in levels of caregiver self-efficacy and caregiver preparedness between 1 and 3 months postdischarge. Studies of caregivers for patients with traumatic brain injury48 and heart failure49 demonstrate that caregiver preparedness increases with time. Thus, the 3-month study period might not have been long enough to fully capture the trajectory of caregiving preparedness in our cohort. However, it is important to note that even though most of our study participants were already providing caregiving prior to injury, their prior caregiving experience did not contribute to caregivers’ perceptions of self-efficacy and preparedness for caregiving nor alleviate caregiver burden.
Several studies of caregivers for adults with kidney disease, dementia, and cancer demonstrate that interventions (eg, educational training, remote coaching) can improve caregiver self-efficacy.50,51,52,53 The Caregiver Advise, Record, Enable (CARE) Act, currently adopted in 42 states, requires hospitals to include caregiver education in the discharge process.54 However, there are no requirements to assess caregiver self-efficacy, preparedness, or burden at time of discharge. Our findings shed light on important gaps in current policies and practices in geriatric trauma; for example, American College of Surgeons standards and guidelines for trauma care, the Trauma Quality Improvement Program (TQIP) Palliative Care Best Practices Guidelines,55 do not address caregiver needs.56
Limitations
This study has several limitations. First, the trauma centers included in this study were in the same health system, were geographically proximate, and have similar patient demographics, potentially limiting the generalizability of our findings. Larger multisite studies involving patients from diverse populations are needed to fully examine differences between groups. Second, recruitment was limited to caregivers of patients who were able to identify them as such. While we did not specifically exclude caregivers of patients with significant cognitive impairment, different recruitment strategies are needed to include this caregiver group. Third, we cannot remove possible selection bias in our convenience sample of individuals willing to partake in study to report their caregiving experience. This may have been particularly challenging for family caregivers unable to participate because of socioeconomic circumstances and living in areas particularly affected by the stresses and strains of the COVID-19 pandemic. Fourth, we were not able to compare differences in caregiver burden before and after the COVID-19 pandemic because we recruited too few participants prior to the pandemic to conduct a subanalysis. Lastly, we did not collect information regarding participants’ prior caregiving experiences, which could have influenced our study findings. It is possible that high rates of caregiver burden reported by our cohort were related to issues aside from geriatric trauma. Nevertheless, our study showed that geriatric trauma admission provides an important opportunity for offering an intervention to address high levels of caregiver burden that many family caregivers experience after discharge.
Conclusions
Our study measured the ongoing challenges and burdens experienced by family caregivers of geriatric trauma patients. Our findings highlighted caregiver self-efficacy and preparedness as promising targets for improving caregiving experience. Family caregivers play an increasingly critical role in providing postdischarge care; it is urgent to embark on concentrated efforts toward the development of targeted caregiver interventions centering on caregiver self-efficacy that continues over time.
eTable 1. Qualifying traumatic injury
eTable 2. Associations between high caregiver burden and caregiver self-efficacy and preparedness for caregiving among informal caregivers of older trauma patients
eTable 3. Sensitivity analysis of high caregiver burden and patients' readmission
eTable 4. Sensitivity analysis of high caregiver burden and home/non-home discharge
eTable 5. Sensitivity analysis of high caregiver burden and home with/without services
eTable 6. Sensitivity analysis of high caregiver burden and rehabilitation facility/skilled nursing facility
eTable 7. Sensitivity analysis of high caregiver burden and caregiver's age
eTable 8. Sensitivity analysis of preparedness scare and caregivers' prior experience on helping with daily activities
Data sharing statement
References
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
eTable 1. Qualifying traumatic injury
eTable 2. Associations between high caregiver burden and caregiver self-efficacy and preparedness for caregiving among informal caregivers of older trauma patients
eTable 3. Sensitivity analysis of high caregiver burden and patients' readmission
eTable 4. Sensitivity analysis of high caregiver burden and home/non-home discharge
eTable 5. Sensitivity analysis of high caregiver burden and home with/without services
eTable 6. Sensitivity analysis of high caregiver burden and rehabilitation facility/skilled nursing facility
eTable 7. Sensitivity analysis of high caregiver burden and caregiver's age
eTable 8. Sensitivity analysis of preparedness scare and caregivers' prior experience on helping with daily activities
Data sharing statement