1 1 SUBMITTED 25 DEC 22 1 REVISION REQ. 8 FEB 23; REVISION RECD. 9 MAR 23 2 ACCEPTED 19 APR 23 3 ONLINE-FIRST: JUNE 2023 4 DOI: https://doi.org/10.18295/squmj.6.2023.040 5 6 Caregiving Preparedness and Caregiver Burden in Omani Family Caregivers for 7 Patients with Acquired Brain Injury 8 Hema Roslin,1 *Joshua K. Muliira,2 Eilean R. Lazarus,1 Devakirubai Jacob,1 9 Warda Al-Habsi,3 Fatma Al-Musallami3 10 11 1Department of Adult Health & Critical Care, College of Nursing, Sultan Qaboos University, 12 Muscat, Oman; 2School of Nursing, Ball State University, Muncie, USA; 3Directorate General of 13 Khoula Hospital, Ministry of Health, Muscat, Oman. 14 *Corresponding Author’s e-mail: joshua.muliira@bsu.edu 15 16 Abstract 17 Objective: To explore the caregiving preparedness and burden among Omani family caregivers 18 (FCs) of patients with acquired brain injury (ABI). Methods: A prospective observational design 19 was used to collect data from 119 FCs and their patients at the time of discharge from the hospital 20 and 16 weeks post-discharge during follow up-care in the neurology clinic. The questionnaire 21 comprised the Zarit Burden Index, the Preparedness for Caregiving Scale, the SF-12 General Health 22 Survey, and a patient symptom scale. Results: FCs were predominantly female (55.5%), and their 23 mean age was 38.27 ± 9.11 years. Most patients had moderate to severe ABI (95.8%) due to stroke 24 (56.3%) and trauma (30.3%). The most common patient symptoms were loss of muscle strength, 25 speech problems, mood problems, memory loss, and change in behavior. Most FCs had a low 26 caregiving preparedness (58%) at discharge, and 19.1% had a high level of caregiving burden at 16 27 weeks post-discharge. The length of time post-injury (p < 0.01), symptom severity (p < 0.01), and 28 the FCs’ physical and mental health status (p < 0.01) were significant predictors of caregiving 29 preparedness. The predictors of caregiver burden were caregiver preparedness (p < 0.01), symptom 30 about:blank 2 2 severity (p < 0.01), and caregivers’ mental health (p = 0.028). Conclusion: Omani FCs of patients 31 with ABI commence the caregiver role with inadequate preparation, and shortly a significant number 32 suffer a high caregiving burden. Interventions focusing on the caregiver’s health and training in 33 symptom management may enhance the outcomes of FCs and patients. 34 Keywords: Acquired brain injury; Caregiving; Caregiving preparedness; Caregiver burden; Family 35 caregivers; Rehabilitation; Traumatic brain injury; Oman. 36 37 Advances in Knowledge 38 • This is the first study to explore caregiving preparedness and caregiver burden in FCs 39 of ABI patients in Oman. 40 • The findings show that patients with ABI are discharged from the acute care setting to 41 home when they are still physically dependent and with a high symptom burden. 42 • The FCs assume the caregiver role in a state of low caregiving preparedness. 43 • In a period of 16 weeks post-discharge, up to 19 % of the FCs report a high level of 44 caregiver burden, despite initiating care in a state of good physical and mental health. 45 46 Application to Patient Care 47 • The findings indicate a gap in neurorehabilitation care for ABI patients in Oman and 48 the need for caregiver support programs to augment their efficacy and caregiving 49 preparedness before resuming the caregiver role. 50 • Discharge planning for patients with ABI needs to be augmented with programs to 51 educate, train, and support the FCs to gain confidence in managing the patient’s symptoms, 52 general care, and personal health while at home. 53 • The uptake of caregiver burden in a short period of time post-discharge has 54 significant implications for the caregiver and ABI patient outcomes, and system-wide 55 interventions such as home health services may help to address the gaps. 56 57 Introduction 58 Acquired Brain Injury (ABI) is recognized as a major contributor to the global burden of disability, 59 death, and lifelong sequelae.1 ABI includes any injury to the brain that is not congenital, 60 degenerative, hereditary, or caused by the birth process but resulting from traumatic and non-61 3 3 traumatic causes. The non-traumatic causes include stroke, infection, and tumors, while traumatic 62 brain injury occurs due to an external force such as falls, traffic accidents, or violence injuring the 63 brain with or without penetration of the skull.2 ABI leads to physical, physiological, cognitive, 64 behavioral, social, and economic difficulties with ramifications for the patient and their families.1 65 Many individuals affected by ABI experience functional limitations necessitating long-term care and 66 support.3 In countries with less established healthcare systems, rehabilitation care is limited, and the 67 support and care needed by patients with ABI are mainly provided at home by family members.4 68 69 The World Health Organization estimates that 60% of the ABI burden is due to road traffic accidents 70 (RTA)5 and predicts that by 2030, RTA will be the 7th leading cause of death worldwide.6 Oman, a 71 country where the current study was conducted, has a high rate of RTA.7 Oman is rated 4th among 72 the Arabian Gulf Co-operation nations and 57th worldwide for RTA injuries and deaths.5-7 Stroke is 73 another major cause of ABI in Oman and is associated with a 25.4% and 30% cumulative mortality 74 rate at 12 months and 24 months, respectively.8 The key factors fueling the high rates of ABI in 75 Oman include the high incidence of hypertension, diabetes mellitus, dyslipidemia, obesity, sedentary 76 lifestyles, and the aging population.8 Approximately 41.4% of Omani stroke patients remain 77 physically dependent after the acute phase, and 59% remain with a Modified Rankin Scale for 78 Neurologic Disability of greater than two (2) after discharge from the hospital.8 79 80 Due to the lack of robust neuro-rehabilitation and home care services in Oman, patients affected by 81 ABI and related sequelae are directly discharged home (after acute hospital care), and the family 82 members assume the caregiving role. The family member who takes on the primary responsibility of 83 providing physical, emotional, and financial support to the ABI patient while at home is referred to 84 as the family caregiver (FC).9 In Oman, there are currently no support systems for the FC. The FC 85 assumes the caregiver role without any formal assistance from the healthcare system. In other 86 studies, the lack of support is reported to be associated with low preparedness and high caregiver 87 burden among family caregivers (FCs) of patients with ABI.10 On the other hand, education 88 programs for FCs have been found to improve caregiver preparedness and well-being.11 89 90 The caregiver role requires tolerance and commitment to meet the ABI patient’s needs related to 91 personal hygiene, dressing, nutrition, communication, emotional support, mobility, and safety, 92 4 4 especially in those with minimal physical capabilities.12 Therefore, the FCs play a vital role in the 93 recovery, rehabilitation, and community re-integration of a patient with ABI.13 Thus, the lack of 94 support for FCs can negatively impact the ABI patient. Additionally, the demands of caregiving 95 increase the tendency of self-neglect among FCs, which worsens as the ABI patients’ home care 96 needs become prolonged and arduous.14 Subsequently, the FCs may become some kind of hidden 97 patients themselves.15 98 99 Studies from other countries show that the caregiving burden from ABI patients is relatively higher 100 compared to patients with other conditions.10 Caregiving burden is a multidimensional phenomenon, 101 with physical, psychological, financial, and social isolation ambits.1 The FCs also have a burden of 102 inadequate information about future patient outcomes.16 One of the moderators of caregiver burden 103 is the level of preparedness for the caregiver role. Caregiving preparedness is the caregiver’s 104 perceived ability to meet the care needs of the patient and the ability to arrange for the patient and 105 handle emergent situations.17 The FC may feel unprepared for the role due to personal factors and 106 lack of skills.18 The fact that most ABI occurs unexpectedly allows no time for most FCs to learn 107 new skills or adjust to the new roles.10 108 109 Caregivers with high caregiving preparedness tend to experience low caregiver burden, marginal 110 strain, and mood disturbances and have better self-care.17 A high caregiving preparedness is 111 associated with low hospital readmissions and accelerated ABI patient recovery.17 Despite the 112 contribution of FCs towards the rehabilitation and recovery of ABI patients, no studies have focused 113 on their preparedness, caregiver burden, or health outcomes in Oman. The current study explored the 114 caregiver burden and preparedness of FCs of patients with ABI in Oman. The study results will be 115 used to plan a home-based nurse-led program to support ABI patients and their FCs. 116 117 Methods 118 A prospective observational design was used to follow FCs of patients with ABI for a period of 16 119 weeks post-discharge (April 2019- December 2021) from the acute care hospital. The FCs and 120 patients were recruited at the time of discharge from the neuro-critical care unit (30 beds) and 121 neurology ward at Khoula Hospital in Oman. The patients were individuals of age ≥ 18 years and 122 5 5 admitted with a confirmed diagnosis of any type of ABI. In order to be included in the study, the 123 ABI patient had to be able to state their names, positively identify family members, and a 124 125 Modified Rankin Scale for Neurologic Disability of at least +1. The FC was the family member 126 (relative) responsible for providing day-to-day care at home for the ABI patient after discharge from 127 the hospital. The FCs were included if they were identified by the patient as the main person who 128 will be responsible for the care of the patient once discharged from the hospital; Omani by 129 nationality; age ≥18 years; able to speak and understand Arabic or English; live in the same 130 household as the ABI patient; and able to provide written consent. 131 132 A purposive sampling approach was used to identify ABI patients and their FCs. A total of 119 133 patients with ABI and their FCs were recruited in the study at the time of discharge from the 134 hospital. An interview questionnaire was used to collect data from the FCs. The questionnaire was 135 comprised of the SF-12 Healthy Survey (SF-12), the Preparedness for caregiving scale (PCS), the 136 abridged Arabic version of the Zarit Burden Inventory (AZBI), and the ABI symptom severity scale. 137 The FCs’ general health was measured using the SF-12. The physical and mental health scores range 138 from 0 to 100, where zero indicates the lowest level of health and 100 indicates the highest level of 139 health. The internal consistency and test-retest reliabilities of the SF-12 range from 0.67 to 0.82.19 140 141 The FCs’ preparedness for caregiving was measured with the PCS.20 The PCS (8 items) assesses 142 how well the FC is prepared for the demands of caregiving.20 The responses are rated on a 5-point 143 Likert scale ranging from 0 (not at all prepared) to 4 (very well prepared). Item scores are summed 144 to generate a total score (ranging from 0 to 32), and high scores indicate a high level of 145 preparedness. The PCS Cronbach’s alpha in the current study was 0.98, and this is consistent with 146 the range of 0.88 to 0.95 reported in other studies.20 The caregiving burden incurred while caring for 147 the patient with ABI was measured using the AZBI. The AZBI has 12 items with a five-point 148 response Likert scale (total scores range from 0 to 48).21 High scores indicate a high caregiving 149 burden. In this study, the AZBI Cronbach’s alpha was 0.90, whereas other studies reported alpha’s 150 ranging from 0.74 to 0.81.21 151 152 6 6 The ABI patient symptom severity score was used to assess the presence and severity of symptoms 153 commonly associated with ABI. The symptoms assessed are summarized in Table 2. The severity of 154 the symptom was rated on a scale developed by the investigators, ranging from 1 to 5 (1= no 155 difficulty, 3 = mild difficulty, 4 = moderate difficulty, and 5 = severe difficulty). A total score was 156 computed by generating the sum of all items (symptom burden). The Cronbach’s alpha of the 157 symptom severity scale was 0.88. 158 159 The study was approved by the Research Committee of the hospital, the Ministry of Health in Oman, 160 and the investigators’ institutions. The participants received explanations of the study procedures 161 and signed the consent form before data collection. The investigators approached the charge nurses 162 of units that admit patients with ABI to identify those scheduled for discharge. The nurses notified 163 the study research assistant (a nurse) of the discharge time and when a family member could take the 164 patient home. The research assistant screened the family member for eligibility before collecting 165 data about the patient and caregiver characteristics, FC preparedness for caregiving, and health status 166 at discharge. 167 168 The FCs were also informed that additional data about the caregiving burden would be collected 169 during the patient’s neurology clinic follow-up appointment at 16 weeks. The patients with ABI 170 return to the neurology clinic for follow-up care at least every two months. The caregiving burden 171 data were collected during the 2nd follow-up appointment (at 16 weeks) because this span of time 172 ensured adequate experience and familiarity with the caregiving role and demands. Of the 119 173 participants recruited in the study, 105 (FCs and ABI patients) showed up for the 2nd appointment at 174 16 weeks (see Figure 1). The remaining 14 FCs did not show up because the patient died before the 175 2nd follow-up appointment. 176 177 Data were analyzed using Statistical Package for the Social Sciences (SPSS), version 23 (IBM 178 Corp., Armonk, New York, USA). Descriptive statistics were used to summarize sample 179 characteristics, patient symptoms, FCs’ health status, caregiving preparedness, and caregiver burden. 180 Pearson’s correlations were used to determine the factors associated with caregiving preparedness 181 and caregiver burden. Multiple linear regression analyses (stepwise method) were conducted to 182 7 7 establish the predictors of caregiving preparedness and burden. Multicollinearity was tested using 183 the variance inflation factor and tolerance. A p-value of less than 0.05 was statistically significant. 184 185 Results 186 The mean age of FC was 38.27 ± 9.114 years, and the majority were female (55.5%), the parent 187 (36.1%) or child (38.7%) of the patient and had no help at home with the caregiving responsibilities 188 (95.8%) (see Table 1). Most patients were male (57.1%), with a diagnosis of stroke (56.3%), and had 189 a Glasgow coma scale (GCS) score equivalent to moderate or severe injury at the time of admission 190 (95.8%) and mild injury at the time of discharge (86.6%). The mean GCS scores at the time of 191 admission and discharge were 8.43 ± 2.381 (severe injury status) and 14.25 (mild injury status), 192 respectively. 193 194 At the time of discharge from the hospital, all the ABI patients had at least seven symptoms (see 195 Table 2). The most common and severe symptoms were inability to live independently (4.92 ± 0.44), 196 loss of muscle strength, paralysis, limited physical mobility or poor coordination (4.68 ± 0.68), 197 change in speech or difficulty in being understood (4.45 ± 1.10), mood problems (4.27 ± 1.09), loss 198 of memory and concentration (4.25 ± 1.24), and behavior problems (4.08 ± 1.14). The mean 199 symptom score of the patients was 38.14 ± 7.42 out of 45 possible points. Most patients (94.1%) had 200 a very high symptom burden (total score ≥ 24) at the time of discharge. 201 202 Overall the FCs reported good physical (M= 79.24 ± 24.08) and mental health (M= 63.31 ± 15.0), 203 low caregiving preparedness (M= 17.52 ± 9.29), and low caregiver burden (M= 16.98 ± 8.76) (see 204 Table 3). At the time of discharge, the majority of FCs were in good physical (83.2%) and mental 205 health (90.8%) but had low caregiving preparedness (58%). After 16 weeks of caregiving, 19.1% of 206 the FCs had a high caregiver burden. The factors associated with caregiving preparedness and 207 caregiver burden are presented in Table 4. 208 209 The results from multiple regression analysis to determine predictors of caregiving preparedness and 210 burden are summarized in Table 5. The final model explained a statistically significant amount of 211 variance in caregiving preparedness, F (4, 113) = 29.81, p < 0.01, R2 = 0.513, R2adjusted = 0.496. The 212 length of time since the injury occurred (p < 0.01), symptom severity score (p < 0.01), FCs’ physical 213 8 8 health (p < 0.01), and FCs’ mental health (p < 0.01) at the time of discharge were significant 214 predictors of caregiving preparedness. The four factors explain 49.6% of the variance in caregiving 215 preparedness. 216 217 The level of caregiving preparedness (p < 0.01), symptom severity score (p < 0.01), and the FCs’ 218 mental health status (p = 0.028) at the time of discharge were significant predictors of caregiver 219 burden. The final model explained a statistically significant amount of variance in caregiving 220 burden, F (3, 100) = 20.57, p < 0.01, R2 = 0.382, R2adjusted = 0.363. The three factors explained 36.3% 221 of the variance in caregiver burden. A 0.4-point increase in preparedness was associated with a one-222 point decrease in the caregiving burden. A 0.1-point increase in the FCs’ mental health status was 223 associated with a 1-point decrease in the caregiver burden. And a 0.3-point increase in the patient’s 224 overall symptom severity was associated with a 1-point increase in caregiver burden. 225 226 Discussion 227 To our knowledge, this is the first study to explore caregiving preparedness and caregiver burden in 228 Omani FCs of patients with ABI. The findings show that many ABI patients are discharged home 229 when they are still physically dependent and with a high symptom burden. And the FCs assume the 230 caregiver role in a state of low caregiving preparedness. It is therefore not surprising that in a period 231 of 16 weeks post-discharge, up to 19.1% of the FCs report high levels of caregiver burden, despite 232 initiating care in a state of good physical and mental health. The above findings indicate a gap in 233 neurorehabilitation care for ABI patients in Oman and the need for FC support programs to augment 234 their efficacy and preparedness before resuming the caregiver role. 235 236 The uptake in caregiver burden in a short period of time post-discharge has significant implications 237 for the ABI patient’s outcomes, such as symptom management, recovery, hospital re-admission, 238 survival, and the FCs’ health and well-being. These should be investigated in future studies. 239 Considering the absence of structured rehabilitation programs, there is a need for structured pre-240 discharge interventions to educate, support, and prepare the FCs for the caregiver role. Other studies 241 show that structured caregiver education and training programs increase preparedness, decreased 242 caregiver burden, and lead to better outcomes for the ABI patient.22 Strategies like peer mentoring 243 9 9 and peer support groups can also improve FCs’ preparedness, mental health, and ability to handle 244 caregiving stress.3 245 246 In other countries, patients with ABI and their families have identified specific needs during the 247 transition from acute care to home.23 These include patient and family education, discharge 248 preparation, information about the patient’s recovery roadmap, linking pre-discharge care with post-249 discharge resources, and others.23 The provision of the above supportive measures empowers the 250 FCs to approach care for ABI patients in a better way and with a high degree of resilience. 251 252 The majority of ABI patients in our study had at least seven symptoms at the time of discharge, and 253 this is similar to the findings of other studies.24,25 In other studies, the ABI patients had reduced 254 symptoms after six months.24,25 In our study, symptom severity was assessed at the time of discharge 255 from acute care. This highlights the need for longitudinal studies to evaluate the trajectory of ABI 256 patient symptoms over time and the impact of the symptom burden on Omani FCs. A few studies 257 recommend that reassuring the patients that the symptoms are manageable with proper treatment and 258 regular exercise during the period of rehabilitation is a good approach.24,25 Unfortunately, in Oman, 259 access to post-hospital rehabilitation is intermittent or not accessible. 260 261 The predictors of caregiving preparedness were the length of time since the occurrence of the injury, 262 symptom severity score, and FCs’ physical and mental health status. The four factors highlight the 263 importance of preparing FCs in symptom management and personal health promotion and coping. 264 This can be achieved during the time when the ABI patient is in acute care and residential 265 rehabilitation. The predictors inform us that interventions that help the FCs to gain confidence in 266 managing the ABI patient’s symptoms, FCs’ personal health promotion, home health care services, 267 and additional time in rehabilitation may enhance the caregiver’s preparedness. 268 269 Up to 19.1% of the FCs reported severe caregiver burden at 16 weeks post-discharge, and the 270 predictors of caregiver burden were the level of caregiving preparedness, symptom severity score, 271 and the FCs’ mental health status at the time of discharge. This rate of burden is closely similar to 272 that reported by other studies.23,26 A study of FCs of stroke survivors conducted in Texas reported 273 that 17% had moderate to severe caregiver burden, and the burden was associated with moderate to 274 10 10 severe functional disability.27 Other studies show that a high level of caregiving burden is associated 275 with ABI patients’ brain injury severity, low ability to perform activities of daily living,11,28 presence 276 of tracheostomy tube, and speech or swallowing disorders.1,3,12 277 278 Our study, like others, supports the observation that it takes time for the FCs to attain adequate 279 preparedness or readiness to care for the ABI patient at home.10,29,30 Therefore, supportive 280 interventions and deliberate training for FCs are needed in order to shorten the time and reduce the 281 challenges faced in the process of achieving preparedness. The FCs experience better health status 282 when they receive support, teaching, home health care services, and orientation to caring for ABI 283 patients at home.1,13,14 The current study was observational that could not implement the above 284 interventions. Therefore, we recommend interventional studies tailored to Oman culture to address 285 the unmet needs of FCs while caring for ABI patients at home. 286 287 The study had limitations that need to be considered when interpreting its results, and these include a 288 small sample, limited follow-up period (16 weeks), limited data about patient symptoms, and 289 participant recruitment from a single site. Additionally, the sample was comprised of ABI patients 290 who had a high severity of deficits, which could have skewed the caregiver burden. Moreover, 291 family caregivers tend to minimize their personal health problems in an effort to emphasize the 292 primacy of the care and needs of the patient they are responsible for. 293 294 Conclusion 295 The FCs of ABI patients in Oman commence the caregiver role when they are in good health, but 296 with inadequate preparation, and shortly a large number experience a high caregiving burden. The 297 ABI patients are discharged from acute care when they still have multiple severe symptoms 298 associated with ABI, and this situation escalates the caregiver burden. The process of in-hospital 299 care for ABI patients should be augmented with interventions to enhance the FCs’ caregiving 300 preparedness in order to enhance the outcomes of both the caregiver and the patient. Additionally, 301 the healthcare system needs to be augmented with neurorehabilitation services as a way of 302 improving patient outcomes and reducing the FC’s burden. 303 304 Authors’ Contribution 305 11 11 JKM, HR, and DJ conceptualized and planned the study. HR, WA, FA, and DJ collected the data 306 and carried out measurements. JKM, HR, and DJ supervised the study and acquired the funding. 307 JKM and ERL analyzed and interpreted the data. JKM, HR, and ERL wrote the draft manuscript 308 with critical feedback and help from DJ, WA, and FA. All authors were involved in the study 309 investigation, discussed the results, and approved the final version of the manuscript 310 311 312 Acknowledgments: The authors convey thanks to the administrators and healthcare providers at 313 Khoula Hospital for their cooperation during data collection. 314 315 Conflict of Interest 316 The authors declare no conflicts of interest. 317 318 Funding: The study was funded by the Sultan Qaboos University Internal Grant 319 IG/CON/AHCC/19/03. 320 321 References 322 1. Tezel N, Umay E, Çakcı A. Factors affecting the caregiver burden following traumatic brain 323 injury. Gulhane Med J 2021; 63(3):186-92. https://doi.org/10.4274/gulhane.galenos.2021.1460 324 2. De Geus EQ, Milders MV, Van Horn JE, Jonker FA, Fassaert T, Hutten JC, et al. Acquired brain 325 injury and interventions in the offender population: a systematic review. Front Psychiatry 2021; 326 12:658328. https://doi.org/10.3389/fpsyt.2021.658328 327 3. 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J Mind Medical Sci 2021; 8(1):76-85. 409 https://doi.org/10.22543/7674.81.P7685 410 30. Anderson MI, Daher M, Simpson GK. A predictive model of resilience among family caregivers 411 supporting relatives with traumatic brain injury (TBI): A structural equation modelling approach. 412 Neuropsychol Rehabil 2020; 30(10):1925-46. https://doi.org/10.1080/09602011.2019.1620787 413 414 https://doi.org/10.1177/2158244018807954 https://doi.org/10.1097/JNN.0000000000000552 https://doi.org/10.1136%2Fbmjopen-2020-041637 https://doi.org/10.22543/7674.81.P7685 https://doi.org/10.1080/09602011.2019.1620787 15 15 Figure 1. Flow chart 119 patients and family caregivers were recruited at the time of discharge from hospital No data collection. 14 patients died before the first appointment 105 patients and family caregivers showed up for the follow-up appointment at 16 weeks post-discharge Caregiving preparedness and patient symptom data collected from 119 Caregiver burden data were collected from 105 family caregivers 415 416 16 16 Table 1: Characteristics of the family caregivers and patients 417 Characteristic FCs (n=119) Patients (n=119) f (%) f (%) Gender Male Female 55 (44.5) 66 (55.5) 68 (57.1) 51 (42.9) Age in years 18-38 39-59 60-80 ≥ 81 66 (55.5) 50 (42) 3 (2.5) -- 18 (15.1) 22 (18.5) 59 (49.5) 20 (16.8) Marital status Single Married Separated/divorced/widowed 22 (18.5) 93 (78.2) 4 (3.4) 12 (10.1) 71 (59.7) 36 (30.3) Level of education ≤ High school Associate degree/Diploma ≥ Bachelor’s degree 90 (75.6) 7 (5.9) 22 (18.4) 114 (95.8) 1 (0.8) 4 (3.1) Employment status Full-time Part-time Unemployed 68 (57.1) 9 (7.6) 42 (35.3) 44 (37) 6 (5) 69 (58) Relationship to patient Parent Spouse Child Sibling Legal guardian 43 (36.1) 13 (10.9) 46 (38.7) 14 (11.8) 3 (2.5) -- -- -- -- -- Has other family members who need care No Yes 114 (95.8) 5 (4.2) -- -- Cause of injury or patient diagnosis Trauma (MVA and assault) Aneurysm Stroke -- -- -- 36 (30.3) 16 (13.4) 67 (56.3) Length of time since the injury occurred (days) 1 – 180 181 – 360 ≥ 361 -- -- -- 66 (55.5) 6 (5) 47 (39.5) Glasgow coma scale on admission 13 - 15 (Mild) 9 - 12 (Moderate) 8 (Severe) -- -- -- 5 (4.2) 62 (52.1) 52 (43.7) Glasgow coma scale at the time of discharge 13 - 15 (Mild) 12 (Moderate) -- -- 103 (86.6) 16 (13.4) MVA, Motor vehicle accident, FCs, family caregivers 418 419 420 421 17 17 Table 2: Symptom profile of acquired brain injury patients at the time of discharge 422 Symptom Severity Rating M ± SD No Difficulty Mild Difficulty Moderate Difficulty Severe Difficulty % % % % Ability to live independently 0.8 0.8 3.4 95 4.92 ± 0.44 Loss of muscle strength, paralysis, limited physical mobility, or poor coordination 1.7 1.7 21.8 73.9 4.68 ± 0.68 Change in speech or difficulty being understood 6.7 7.6 12.6 73.1 4.45 ± 1.10 Mood problems (including depression, anxiety, denial, and frequent change in emotion) 5.9 13.4 22.7 58 4.27 ± 1.09 Loss of memory and concentration 9.2 16.9 16 63 4.25 ± 1.24 Changes in behavior, aggression, anger, impulsiveness, and others 6.7 20.2 24.4 48.7 4.08 ± 1.14 Insomnia 10.9 20.2 22.7 46.2 3.93 ± 1.29 Blurred or loss of vision 16.8 10.9 26.9 45.4 3.84 ± 1.44 Loss of hearing or ringing in the ears 21 13.4 22.7 42.9 3.66 ± 1.54 423 Table 3: Family caregivers’ quality of life, caregiving preparedness, and caregiving burden 424 Variable level % Median Mean SD SE SF-12 Physical component summary (n= 119) Poor (≤ 50) 16.8 91.67 79.24 24.08 2.21 Good (≥ 51) 83.2 SF-12 Mental component summary (n =119) Poor (≤ 42) 9.2 65 63.31 15 1.38 Good (≥ 43) 90.8 Caregiving preparedness (n=119) Low (≤ 19) 58 16 17.52 9.29 0.85 High (≥ 20) 42 Caregiving burden (n= 105) Low (≤ 24) 81.9 18 16.98 8.76 0.85 High (≥ 25) 19.1 SD, standard deviation; SE, standard error of the Mean 425 426 18 18 Table 4: Factors associated with caregiving preparedness and burden (n= 105) 427 Factor Caregiving preparedness Caregiving burden r p-value r p-value Caregiving preparedness at the time of discharge from the hospital - 0.545 < 0.01** FC mental health status at the time of patient discharge -0.267 < 0.01** -0.315 < 0.01** FC physical health status at the time of patient discharge -0.249 0.006** 0.045 0.65 Glasgow’s coma score at the time of discharge from the hospital 0.156 0.090 -0.227 0.020* Symptom severity score at the time of discharge from the hospital -0381 < 0.01** 0.427 < 0.01** Length of time since patient injury (in days) 0.609 < 0.01** -0.431 < 0.01** **Correlation is significant at the 0.01 level (2-tailed); *Correlation is significant at the 0.05 428 level (2-tailed); r = Pearson’s Correlation; FC = family caregiver 429 430 Table 5: Predictors of caregiving preparedness and caregiver burden 431 Dependent variable Factor Unstandardized Coefficient t p-value 95% CI β SE Caregiving preparedness Constant 23.59 4.45 5.30 < 0.01 14.76 – 32.41 Length of time since patient injury (in days) 0.01 0.00 5.99 < 0.01 0.0 – 0.01 Symptom severity score -0.28 0.09 -3.35 < 0.01 - 0.45 – -0.12 FC physical health status -0.13 0.03 -4.11 < 0.01 -0.20 – -0.07 FC mental health status -0.20 0.05 -3.82 < 0.01 0.10 – 0.30 Caregiver burden Constant 18.996 5.174 3.67 < 0.01 8.73 – 29.24 Caregiving preparedness -0.37 0.08 -4.48 < 0.01 -0.53 – -0.21 Symptom severity score 0.30 0.10 3.06 < 0.01 0.11 – 0.49 FC mental health status -0.10 0.05 -2.22 0.028 -0.19 – -0.11 CI, confidence interval; SE, standard error; FC, family caregiver 432