SUBMITTED 3 JAN 23 1 REVISION REQ. 16 MAR 23; REVISION RECD. 17 MAR 23 2 ACCEPTED 4 APR 23 3 ONLINE-FIRST: MAY 2023 4 DOI: https://doi.org/10.18295/squmj.5.2023.028 5 6 Predictors of Quality of Life among Omani Family Caregivers for 7 Traumatic Brain Injury Patients 8 Devakirubai Jacob,1 *Joshua K. Muliira,2 Eilean R. Lazarus,1 Hema 9 Roslin1 10 11 1Department of Adult Health & Critical Care, College of Nursing, Sultan Qaboos 12 University, Muscat, Oman; 2School of Nursing, Ball State University, Muncie, USA. 13 *Corresponding Author’s e-mail: joshua.muliira@bsu.edu 14 15 Abstract 16 Objective: After acute care, the burden of caring for patients with traumatic brain injury 17 (TBI) is mainly shouldered by the family caregivers (FCs). We aimed to explore the quality 18 of life (QoL) of Omani FCs for patients with TBI. Methods: A total of 36 FCs and patients 19 with TBI were recruited from one hospital. Data was collected at discharge time and eight 20 weeks post-discharge in the period from April 2019 to December 2021. The SF-12 general 21 health survey and preparedness for caregiving scale were used to measure the caregivers’ 22 QoL and preparedness, respectively. The disability rating scale and the TBI symptom scale 23 were used to measure the patient’s disability and symptoms, respectively. Paired t-test and 24 multiple linear regression analysis were performed. Results: Most caregivers were the 25 parent (41.7%) or child (27.8%) of the patient with TBI. Overall the caregivers had good 26 physical QoL (PQoL) and mental health QoL (MHQoL) but low caregiving preparedness 27 at the time of discharge. At eight weeks post-discharge, there were significant 28 improvements in caregiving preparedness (p< 0.01), patient disability (p< 0.05), and 29 about:blank depreciation in caregivers’ MHQoL (p< 0.05), but no change in the PQoL. The modifiable 30 predictors of PQoL were the caregiver’s employment status and the severity of the patient’s 31 sleep and mood problems. The predictors of MHQoL were caregiving preparedness, the 32 patient’s inability to live independently, and the severity of mood and behavioral problems. 33 Conclusion: Omani FCs for patients with TBI experience a negative impact on QoL, and 34 this is correlated with the physical, emotional, and mental health symptoms of the patient. 35 Keywords: Caregiving, Family, Quality of Life, Caregiving Burden, Traumatic Brain 36 Injury, Caregivers’ preparedness, Oman. 37 38 Advances in knowledge 39 • Most Omani family caregivers for patients with TBI have low caregiving 40 preparedness and are not ready to adequately meet the patient care needs when the 41 patient is discharged from the acute care hospital. 42 • Within a period of eight weeks, the family caregivers self-teach and improve their 43 abilities and caregiving preparedness as they spend more time with the patients 44 and in the caregiver role. 45 • The process of adapting to the caregiving demands negatively impacts the family 46 caregivers and is associated with a decline in the caregivers’ mental health at 47 eight weeks post-discharge. 48 49 Application to patient care 50 • The study highlights the importance of discharge planning that ensures family 51 caregiver involvement, training, skilling, and support. 52 • There is a need for supportive care programs that ensure caregiver readiness for 53 caregiving responsibilities and personal health promotion while performing the 54 caregiver role. 55 • Further research focusing on family-centered interventional programs may help to 56 develop culturally sensitive and cost-effective programs for supporting, educating, 57 and empowering caregivers for patients with TBI. 58 59 60 Introduction 61 Traumatic brain injury (TBI) is an alteration in brain function or evidence of brain 62 pathology caused by an external force.1 TBI is a significant cause of death or disability 63 with a wide spectrum of symptoms and sequelae.2 One of the leading causes of TBI is 64 road traffic injuries arising from crashes and accidents (RTIs). Annually, approximately 65 1.3 million people succumb to death due to RTIs, and these (RTIs) are projected to be a 66 leading contributor to global fatalities by 2030.3 Reports by the World Health 67 Organization show that RTIs cause 3.55% of deaths in Oman, the age-adjusted death rate 68 due to RTIs is 12.63 per 100,000 population, and the country ranks 113th in the world for 69 the highest number of RTIs.4 70 71 In Oman, the RTIs are attributed to the rise in urbanization, nocturnal driving, speeding, 72 alcohol use, mobile phone usage, and vehicle ownership.5 The other causes of TBI 73 include unintentional falls, intentional self-harm, gunshots, violence, assaults, and 74 others.6 The increasing population of older adult Omanis that experience falls and other 75 forms of injuries has also been reported to be contributing to a rise in TBI.7 The patients 76 that survive the acute phase of TBI live with sequelae such as cognitive decline, 77 functional impairment, physical disability, psychological and behavioral disturbances, 78 and overall changes in personality.8 Irrespective of the severity of the injury, TBI is 79 associated with neurocognitive deficits such as amnesia, insomnia, mood disorders, and 80 others.9 81 82 In the acute phase, patients with TBI are managed in specialist trauma centers and are 83 later transferred to neuro-rehabilitation facilities. In countries where rehabilitation, long-84 term care, and/or home care services are negligible, the family caregiver (FC) takes up 85 the responsibility for the patient’s rehabilitation, home care, and reinstitution into society 86 when the patients with TBI emerge out of the acute phase. Trauma care is available in all 87 tertiary hospitals in Oman, but the country has one specialized tertiary neuro-trauma care 88 center and a ratio of 1.25 physiotherapists per 10,000 population.10 Therefore, access to 89 specialized neuro-rehabilitation facilities is feasible in urban settings but limited in other 90 locations, and this puts more burden on the shoulders of the FCs. 91 92 Caregiving is a multi-faceted role that leads the FCs to provide physical, psychological, 93 emotional, social, and financial support while simultaneously experiencing strain and 94 stress.11 Due to a lack of well-established rehabilitation services10, Omani FCs for 95 patients with TBI are likely to assume caregiving roles without any support or training to 96 help them meet the new demands and responsibilities. Considering the physical, 97 cognitive, behavioral, and psychosocial sequelae of TBI, the FCs taking care of such 98 patients at home tend to be overwhelmed if they are not supported.12 99 100 Studies conducted in other countries and focusing on FCs for patients with TBI show that 101 family members assuming the caregiver role without any formal training and support 102 system experience a high caregiving burden, poor family functioning, poor mental health, 103 and emotional distress.13 The FCs also experience a lack of time for self-care, interrupted 104 life, poor physical health, social isolation, sleep disturbances, depression, exhaustion, and 105 anger.14 The most common physical symptoms among caregivers of patients with TBI 106 include low energy, trouble sleeping, digestive problems, back pain, and joint pain.15 107 108 A study conducted in Turkey showed that the caregiving burden is higher among FCs that 109 are older and unemployed or with financial difficulties, and both factors affected the care 110 given to the patient with TBI.16 One of a few studies that focused on Omani FCs of 111 patients with TBI found a limited availability of rehabilitative resources, lack of support 112 services for FCs, and utilization of personal religious faith and beliefs to cope with the 113 caregiving strain.17 Despite the problem of TBI in Oman4,7 and its impact on the family, 114 no study has focused on the QoL of Omani FCs of patients with TBI. Our study aimed to 115 explore the QoL of Omani FCs for patients with TBI and the predictors of QoL. 116 117 Methods 118 A cross-sectional design was used to collect data from FCs and patients with TBI at the 119 time of discharge from the hospital and at eight (8) weeks post-discharge (April 2019- 120 December 2021). The FCs and patients with TBI (participants) were recruited from one 121 hospital (Khoula Hospital). The patients were Omanis of age ≥18 years, with a confirmed 122 diagnosis of TBI, able to state their names, positively identify family members, and with 123 a minimum Modified Rankin Scale for Neurologic Disability of at least +1. The FCs 124 were any family member scheduled to provide regular day-to-day care at home for the 125 patient after discharge from the hospital. The FCs were included if they met the inclusion 126 criteria of being the main person responsible for the care of a patient with TBI at home; 127 Omani by nationality; the age of ≥18 years; able to speak Arabic or English; live in the 128 same household as the patients with TBI; and has no formal training as a healthcare 129 profession. A convenience sampling approach was used to identify patients with TBI and 130 their FCs. A convenience sampling technique allowed us to access patients with TBI, 131 which is a very hard-to-access population. Many studies of patients with TBI have used 132 samples ranging from 30 to 100 participants.18 A total of 36 FCs and their patients with 133 TBI were recruited for the study. 134 135 Study Instrument 136 An interview questionnaire (IQ) was used to collect data. The IQ was comprised of six 137 sections of the FC and patient demographic characteristics (see Table 1); caregivers’ QoL 138 (SF-12 general health survey); preparedness for caregiving scale (PCS); the disability 139 rating scale (DRS); and the TBI symptom severity scale. The SF-12 Health Survey (SF-140 12) has internal consistency and test-retest reliabilities ranging from 0.67 to 0.82.19 A 141 score of 50 and 42 have been recommended as a cut-off for the physical health QoL 142 (PQoL) and mental health QoL (MHQoL), respectively.19 The family caregiver’s 143 preparedness to care for a patient with TBI at home was measured using the PCS.20,21 The 144 PCS has eight (8) items assessing preparedness in multiple domains of caregiving.20,21 145 The participants’ responses are rated on a 5-point Likert scale ranging from 0 (not at all 146 prepared) to 4 (very well prepared). The items are summed to generate total scores 147 (ranging from 0 to 32). High scores on the PCS indicate a high level of preparedness. The 148 PCS has a Cronbach’s alpha of ≥ 0.8820,21 In the current study, the PCS Cronbach’s alpha 149 at the time of discharge and eight weeks post-discharge were 0.94 and 0.96, respectively 150 151 The disabilities of patients with TBI were measured using the DRS. The DRS (8 items) 152 measures and tracks TBI disability from the state of coma to the community.22 The DRS 153 focuses on impairments, disabilities, and handicaps related to eye-opening, 154 communication ability, motor response, feeding, toileting, grooming ability, level of 155 functioning, and employability or level of handicap.22 The DRS total scores range from 0 156 (no disabling impairments) to 29 (extreme vegetative state). The total scores are further 157 classified as no disability (0), mild (1), partial (2-3), moderate (4-6), moderately severe 158 (7-11), severe (12-16), extremely severe (17-21), vegetative state (22-24), and extreme 159 vegetative state (25-29).22 The DRS has an inter-rater reliability of ≥ 0.97.22 The DRS 160 was used when the patients were not under the influence of any mind-altering drugs or 161 influence of complications of a recent seizure. The Cronbach’s alpha of the DRS at the 162 time of discharge and eight weeks post-discharge were 0.71 and 0.75, respectively 163 164 The TBI patient symptom scale was used to assess the severity of symptoms of sequelae 165 associated with TBI. The symptoms recorded include loss of muscle strength (paralysis, 166 limited physical mobility, or poor coordination); blurred vision or loss of vision; loss of 167 hearing or ringing in the ears; loss of memory and concentration; changes in speech or 168 difficulty being understood; mood problems (such as depression, anxiety, denial, and 169 frequent change in emotions); insomnia; changes in behaviors (aggression, anger, and 170 being impulsive); and ability to live independently. The severity of the symptoms was 171 rated on a scale (developed by the investigators) ranging from 1 to 5 (1= no difficulty, 3 172 = mild difficulty, 4 = moderate difficulty, and 5 = severe difficulty). The Cronbach’s 173 alpha of the TBI patient symptom scale at the time of discharge and eight weeks post-174 discharge were 0.90 and 0.91, respectively 175 176 Data Collection Procedures 177 The study was approved by the Research and Ethics Committees of the hospital and the 178 investigators’ institutions. All the participants received a detailed explanation of the study 179 procedures and signed the consent form prior to data collection. The investigators 180 approached the charge nurses of units that admit patients with TBI to identify those 181 scheduled for discharge. During the in-patient period, all the patients with TBI are 182 followed by the neurology team and other teams according to medical care needs, 183 comorbidities, and complications. The medical team determines the discharge date and 184 time. The nurse assigned to the patient notified the study research assistant (a nurse) of 185 the time of discharge and when the FC was available to take the patient home. 186 187 On the day of discharge, the research assistant (RA) screened the FC and patient for 188 eligibility. On the day of discharge, the RA also collected time 1 data about the patient’s 189 symptoms, the patient’s level of disability, the caregiver’s preparedness for caregiving, 190 and the caregiver’s QoL. During the meeting (on the day of discharge), the FCs were 191 informed that additional data about caregiving preparedness, QoL, and the patient’s 192 symptoms and disabilities would be collected when the patient is brought for the follow-193 up appointment in the neurology clinic at eight weeks. Patients with TBI return for 194 follow-up care and review in the neurology clinic every two months. Data collection at 195 eight weeks post-discharge helped to ensure that FCs get a reasonable amount of time to 196 experience the caregiving demands. A total of 36 FC and patients with TBI were 197 recruited for the study at discharge time, but 35 FCs and patients showed up for the first 198 appointment at eight weeks. One FC did not show up because the patient died before the 199 first follow-up appointment (see Figure 1). 200 201 Data Analysis 202 Data were analyzed using Statistical Package for the Social Sciences (SPSS), version 23 203 (IBM Corp., Armonk, New York, USA). Descriptive statistics were used to describe the 204 TBI patients’ symptoms and disabilities, the FCs’ preparedness for caregiving, and QoL. 205 The paired t-test was used to examine the difference in patients’ disability, FCs’ 206 caregiving preparedness, PQoL, and MHQoL at the time of discharge and eight weeks 207 post-discharge. Multiple linear regression analyses (backward method) were used to 208 examine predictors of QoL. Multicollinearity was tested using the variance inflation 209 factor and tolerance. A p-value of ≤ 0.05 was considered to be statistically significant. 210 211 Results 212 A total of 36 FCs and their patients with TBI participated in the study at the time of 213 discharge from the hospital, and their characteristics are presented in Table 1. The mean 214 age of the FCs was 38.44 ± 9.23 years. The majority of FCs were female (52.8%), and the 215 parent (41.7%) or child (27.8%) of the patient with TBI. The mean age of patients with 216 TBI was 59.58 ± 20.57 years. The main causes of TBI were motor vehicle accidents, 217 falls, and assaults. The majority of patients were male (52.8%) and had a Glasgow coma 218 scale score (≤ 8) equivalent to severe injury at the time of admission (52.8%). The 219 average Glasgow coma scale score on admission and discharge was 7.92 ± 2.40 (severe 220 injury status) and 14.20 ± 2.32 (mild injury status), respectively. 221 222 Symptom Profile of Patients at the Time of Discharge 223 At the time of discharge from the hospital, all patients were found to have multiple 224 symptoms (see Table 2). The most severe symptoms were inability to live independently 225 (97.2%), loss of muscle strength, paralysis, limited physical mobility or poor 226 coordination (77.5%), mood problems such as depression, anxiety, denial, and frequent 227 change in emotions (66.7%), and loss or memory and concentration (63.9%). The mean 228 scores show that in this sample, the symptoms that were most common and severe to deal 229 with were the inability to live independently, loss of muscle strength, mood problems, 230 and change in speech or difficulty being understood by others. 231 232 Change in Patient’s Disability and Caregiver’s Preparedness and Quality of Life 233 The results in Table 3 show that overall the FCs had a good PQoL (M= 71.91 ± 25.69) 234 and MHQoL (M= 63.05 ± 16.96) and low caregiving preparedness (M= 19.74 ± 9.04) at 235 the time of discharge. At eight weeks post-discharge, there was a significant 236 improvement in caregiving preparedness (p < 0.01) and patient’s disability (p < 0.05). At 237 eight weeks post-discharge, there was a significant depreciation in the MHQoL (p < 238 0.05). There was a decrease in PQoL from 71.91 at discharge to 68.93 at eight weeks, but 239 this change was not significant. 240 241 Predictors of Caregiver Quality of Life 242 The results of the multiple regression analysis to determine the predictors of caregivers’ 243 QoL are presented in Table 4. The significant predictors of the PQoL were the age of the 244 caregiver (p < 0.001), the age of the patient (p = 0.013), the caregiver’s employment 245 status (p= 0.001), the severity of patient symptoms related to mood (p= 0.003) and 246 insomnia (p= 0.025). The final regression model showed that five factors were 247 responsible for approximately 56.4% of the variance in the caregivers’ PQoL [F (5, 29) = 248 9.80, p < 0.001, R2 = 0.628, R2adjusted = 0.564]. The significant predictors of the 249 caregivers’ MHQoL were the caregiver’s age (p= 0.003), the patient’s age (p < 0.001), 250 caregiving preparedness (p= 0.05), the severity of the patient’s mood problems (p = 251 0.001), behaviors problems (p= 0.007), and inability to live independently (p= 0.034). 252 The final model showed that the six factors were responsible for approximately 44.9% of 253 the variance in caregivers’ MHQoL [F (6, 28) = 5.62, p= 0.001, R2 = 0.546, R2adjusted = 254 0.449]. 255 256 Discussion 257 Traumatic brain injury (TBI) is a common health problem in Oman, and the risk factors 258 are abundant due to the high percentage of youths in the population, the increasing 259 geriatric population, increasing urbanization, and motor vehicle ownership.7,23,24 Despite 260 the problem of TBI and associated sequelae, there has been no study about the QoL of 261 FCs caring for patients with TBI in Oman or the greater Middle East region. The majority 262 of other studies that have focused on FC in Oman included caregivers of cancer patients 263 and children with autism and found high caregiver burden and low QoL.25,26 264 265 The findings of our study show that the FCs of patients with TBI were mostly female, the 266 parent or child of the patient with TBI, and assumed caregiving responsibilities for a 267 patient with TBI with severe injury (52.8%) and multiple severe symptoms. The 268 symptoms that were most common include the inability to live independently (97.2%), 269 loss of muscle strength, paralysis, limited physical mobility or poor coordination 270 (77.5%), mood problems such as depression, anxiety, denial, and frequent change in 271 emotions (66.7%), and loss or memory and concentration (63.9%). The FCs started the 272 caregiving responsibilities for patients with TBI while in good physical and mental health 273 but with low levels of caregiving preparedness. 274 275 The low level of caregiving preparedness could be due to inadequacies in discharge 276 planning and a lack of programs to prepare FCs for caregiving responsibilities before the 277 patient with TBI is discharged home. A similar study conducted in New South Wells 278 (Australia) found that the majority of caregivers (72%) for patients with TBI felt well 279 prepared or very well prepared overall for caregiving, especially in regard to the patient’s 280 physical needs and responding to patient needs in an emergency.27 The caregivers in the 281 New South Wells were least prepared to get help and information from the health system 282 and to deal with the stress of caregiving.27 The caregivers in the Australian study had 283 been caring for the TBI patients for at least one year, and the country’s healthcare system 284 has established discharge planning processes, neurorehabilitation facilities, and long-term 285 care facilities.27 It is important to note that even in countries with highly established 286 healthcare systems FCs of patients with TBI have challenges related to caregiving stress 287 and seeking help and information from the healthcare system. 288 289 The findings of our study show that in a period of only eight weeks post-discharge, there 290 was significant depreciation in the caregivers’ mental health QoL (p < 0.05). These 291 findings are closely similar to those of a study from Iran, which found that the QoL of 292 FCs of patients with spinal cord injury (SCI) was mainly poor in the mental health 293 dimension.28 Consistent with our findings, a study conducted in the Netherlands showed 294 that the mean mental health score of FCs for patients with TBI significantly depreciated 295 from 63.07 at the time of discharge to 58.41 at eight weeks post-discharge.29 The above 296 findings demonstrate that caregiving for patients with TBI is difficult and promptly 297 impacts the caregivers’ QoL if support and interventions to increase caregiving 298 preparedness are not provided. Hence, the need for interventions to teach, support, and 299 increase the FCs’ preparedness before the patients are discharged and across the 300 caregiving trajectory. Literature shows interventions focusing on skill building, peer 301 support, support groups, advocacy training, and other community-based services targeted 302 at the FC or dyad (FC and patient with TBI) improve health outcomes.30 303 304 Our findings also show that at eight weeks post-discharge, there was a significant 305 improvement in caregiving preparedness (p < 0.01) and the patients with TBI disability (p 306 < 0.05) but no significant change in the FCs’ physical health QoL. This shows that 307 without support or efforts by the healthcare system to prepare the FCs, caregivers use 308 inherent intuition, life experiences, and other resources to provide care to the patient with 309 TBI while also learning how to address the patient’s needs and symptoms. This is likely a 310 very stressful and emotionally draining task that compromises mental health QoL. We 311 recommend more longitudinal studies of the resources FCs use to meet the needs of the 312 patient at home and to assess and monitor the health and health promotion practices of 313 FCs as they adjust to the demands of caring for patients with TBI beyond the eight weeks 314 period. 315 316 The significant modifiable predictors of the FCs’ mental health QoL were caregiving 317 preparedness and the severity of the patient’s symptoms related to mood problems, 318 change in behaviors, and inability to live independently. These findings are consistent 319 with those of other recent studies, which reported that the caregivers of patients with TBI 320 have low mental health QoL due to the patient’s mental health issues and ongoing care 321 needs.31,32 The significator modifiable predictors of the physical QoL were the FCs’ 322 employment status, the severity of symptoms related to mood problems, and insomnia. 323 These findings demonstrate that interventions focusing on training the FC to increase 324 caregiving preparedness, skills needed to care for the patient with TBI with behavioral 325 problems, home-based care-led health professionals such as nurses to assist with 326 symptom management and other community-based services may enhance the caregivers’ 327 QoL and outcomes of the patients with TBI. 328 329 The findings of studies conducted among FCs of patients with TBI in the USA (mainly 330 veterans) show that caregivers report lower QoL in the mental health dimension than the 331 physical.28,31,32 The low mental health QoL is mainly attributed to factors such as 332 perceived social stigma regarding the sequelae of TBI, inappropriate behaviors of patients 333 with TBI, anticipated future financial problems, social isolation, unhealthy family 334 functioning, dissatisfaction with intimate relationships, responsibility overload, sleep 335 deprivation, and suppression of personal needs and emotions.28,31,32 336 337 Regarding caregiving preparedness, the current study revealed that overall, the FCs had 338 low caregiving preparedness at the time of patient discharge from the hospital. At eight 339 weeks post-discharge, there was a significant improvement in the FCs’ caregiving 340 preparedness. Similar findings have been reported by a longitudinal study conducted 341 among Danish FC of patients with TBI.33 However, the FCs in the Danish study received 342 initial support from healthcare providers that helped patients with activities of daily 343 living.33 Therefore, healthcare facilities in Oman must prioritize the implementation of 344 tailored pre-discharge teaching and education and other interventions to increase 345 caregiving preparedness and mitigate poor health outcomes among FC and patients with 346 TBI. 347 348 The study’s findings need to be interpreted in view of its limitations, such as small 349 sample size (increase the risk of a type II error), convenience sampling, and lack of data 350 about caregiver outcomes of depression, anxiety, and coping. The sample was mostly 351 comprised of FCs caring for patients with severe TBI-related disabilities, and this limits 352 the generalizability of the results. Despite its limitations, the study highlights that 353 caregiving for patients with TBI promptly impacts the caregiver’s QoL in the absence of 354 interventions to enhance support and preparedness. We recommend longitudinal and 355 interventional studies focusing on caregiver education, skilling, and support throughout 356 the caregiving trajectory. There is also a need for acute care hospitals to augment 357 discharge planning with interventions that enhance caregiver preparedness before the 358 patient is sent home. Nurses could implement such interventions through community-359 based services such as home care, which can be tailored to the Oman culture and social 360 context. 361 362 Conclusion 363 This is the first study to explore the QoL of FCs of patients with TBI in Oman. The 364 Omani FCs of patients with TBI experience a negative impact on their mental QoL as a 365 result of assuming caregiving responsibilities. The modifiable predictors of QoL were the 366 caregivers’ employment status and caregiving preparedness and patient symptoms related 367 to mood, insomnia, behaviors, and disability. The modifiable factors can be targeted to 368 enhance FCs preparedness and to mitigate poor health outcomes of the dyad (caregiver 369 and patients with TBI). 370 Authors’ Contribution 371 DJ and JKM conceptualized and designed the study. ERL, DJ, and HR collected the data. 372 JKM analyzed and interpreted the data. All authors were involved in the study 373 investigation. ERL, DJ, HR, and JKM handled the project administration. JKM and DJ 374 drafted the manuscript. ERL and HR reviewed and edited the manuscript. JKM, DJ, and 375 HR supervised the study and acquired the funding. All authors approved the final version 376 of the manuscript. 377 378 Conflict of Interest 379 The authors declare that there is no conflict of interest. 380 381 Funding 382 The study was funded by the Sultan Qaboos University Internal Grant 383 IG/CON/AHCC/19/03. 384 385 References 386 1. Menon D K, Schwab K, Wright DW, Maas AI. Position statement: definition of 387 traumatic brain injury. Arch Phys Med Rehabil 2010; 91(11):1637-40. 388 https://doi.org/10.1016/j.apmr.2010.05.017 389 2. Caplan B, Bogner J, Brenner L, Manskow US, Sigurdardottir S, Røe C, et al. Factors 390 affecting caregiver burden 1 year after severe traumatic brain injury: a prospective 391 nationwide multicenter study. J Head Trauma Rehabil 2015; 30(6): 411-23. 392 https://doi.org/10.1097/HTR.0000000000000085 393 3. World Health Organization. Road Traffic Injuries. World Health Organization. From 394 https://www.who.int/violence_injury_prevention/road_traffic/en Accessed on 395 December 14, 2022. 396 4. World Health Organization. World Health Rankings: Oman, Road Traffic Accidents. 397 From https://www.worldlifeexpectancy.com/oman-road-traffic-accidents Accessed on 398 December 15, 2022 399 5. Al-Aamri AK, Padmadas SS, Zhang LC, Al-Maniri AA. Disentangling age–gender 400 interactions associated with risks of fatal and non-fatal road traffic injuries in the 401 https://doi.org/10.1016/j.apmr.2010.05.017 https://doi.org/10.1097/HTR.0000000000000085 https://www.who.int/violence_injury_prevention/road_traffic/en https://www.worldlifeexpectancy.com/oman-road-traffic-accidents Sultanate of Oman. BMJ Glob Health 2017; 2(3): e000394. 402 http://dx.doi.org/10.1136/bmjgh-2017-000394 403 6. Peterson AB, Xu L, Daugherty J, Breiding MJ. Surveillance report of traumatic brain 404 injury-related emergency department visits, hospitalizations, and deaths, United 405 States, 2014. (2019) 406 7. Al-Saadi T, Al-Mirza A, Al-Taei O, Al-Saadi, H. (2022). Geriatric Neurosurgery in 407 High-Income Developing Countries: A Sultanate of Oman Experience. Psychiatry 408 International 2022; 3(4): 264-272. https://doi.org/10.3390/psychiatryint3040021 409 8. Pavlovic D, Pekic S, Stojanovic M, Popovic V. Traumatic brain injury: 410 neuropathological, neurocognitive and neurobehavioral sequelae. Pituitary 411 2019; 22(3):270-82. https://doi.org/10.1007/s11102-019-00957-9 412 9. Jourdan C, Azouvi P, Genêt F, Selly N, Josseran L, Schnitzler A. Disability and 413 health consequences of traumatic brain injury: national prevalence. Am J Phys Med 414 Rehabil 2018; 97(5):323-31. https://doi.org/10.1097/PHM.0000000000000848 415 10. Al-Balushi T, Al-Badi AH, Ali S. Prevalence of disability in Oman: statistics and 416 challenges. Canadian Journal of Applied Sciences 2011;1(3):81-96. 417 11. Hudson C, Radford K, Kettlewell J. A qualitative study to understand the impact of 418 caring for traumatic injury survivors. Int J Environ Res Public Health 2022; 419 19(23):16202. https://doi.org/10.3390/ijerph192316202 420 12. Oberholzer M, Müri RM. Neurorehabilitation of traumatic brain injury (TBI): a 421 clinical review. Med Sci 2019; 7(3). https://doi.org/10.3390/medsci7030047 422 13. Baker A, Barker S, Sampson A, Martin C. Caregiver outcomes and interventions: a 423 systematic scoping review of the traumatic brain injury and spinal cord injury 424 literature. Clin Rehabil 2017; 31(1):45-60. 425 https://doi.org/10.1177/0269215516639357 426 14. Brickell TA, Cotner BA, French LM, Carlozzi NE, O'Connor DR, Nakase-427 Richardson R, et al. Severity of military traumatic brain injury influences caregiver 428 health-related quality of life. Rehabil Psychol 2020; 65(4), 377. 429 https://doi.org/10.1037/rep0000306 430 http://dx.doi.org/10.1136/bmjgh-2017-000394 https://doi.org/10.3390/psychiatryint3040021 https://doi.org/10.1007/s11102-019-00957-9 https://doi.org/10.1097/PHM.0000000000000848 https://doi.org/10.3390/ijerph192316202 https://doi.org/10.3390/medsci7030047 https://doi.org/10.1177/0269215516639357 https://doi.org/10.1037/rep0000306 15. Saban KL. Perceived health, caregiver burden, and quality of life in women partners 431 providing care to Veterans with traumatic brain injury. J Rehabil R D 2016; 53(6). 432 https://doi.org/10.1682/JRRD.2015.07.0143 433 16. Tezel N, Umay E, Çakcı A. Factors affecting the caregiver burden following 434 traumatic brain injury. Gulhane Med J 2021;63(3):186-92. 435 https://doi.org/10.4274/gulhane.galenos.2021.1460 436 17. McCall RK. Understanding family caregiving for individuals with traumatic brain 437 injury after a road traffic crash in Oman (Doctoral dissertation, Queensland 438 University of Technology). 2020. 439 18. Al-Kashmiri AM, Al-Shaqsi SZ, Al-Kharusi AS, Al-Tamimi LA. Save the patient a 440 trip. Outcome difference between conservatively treated patients with traumatic brain 441 injury in a nonspecialized intensive care unit vs. a specialized neurosurgical intensive 442 care unit in the Sultanate of Oman. J Crit Care 2015; 30(3):465-68. 443 https://doi.org/10.1016/j.jcrc.2015.02.010 444 19. Lam ET, Lam CL, Fong DY, Huang WW. Is the SF‐12 version 2 Health Survey a 445 valid and equivalent substitute for the SF‐36 version 2 Health Survey for the 446 Chinese? J Eval Clin Pract 2013;19(1): 200-8. https://doi.org/10.1111/j.1365-447 2753.2011.01800.x 448 20. Zwicker D. Preparedness for caregiving scale. Mov Disord 2010; 28:1-2. 449 21. Henriksson A, Andershed B, Benzein E, Arestedt K. Adaptation and psychometric 450 evaluation of the preparedness for caregiving scale, caregiver competence scale and 451 rewards of caregiving scale in a sample of Swedish family members of patients with 452 life-threatening illness. Palliat Med 2012; 26(7): 930-38. 453 https://doi.org/10.1177/0269216311419987 454 22. Bellon K, Wright J, Jamison L, Kolakowsky-Hayner S. Disability rating scale. J Head 455 Trauma Rehabil 2012; 27(6):449-51. 456 https://doi.org/10.1097/HTR.0b013e31826674d6 457 23. Al-Adawi S, Dorvlo AS, Burke DT, Huynh CC, Jacob L, et al. Apathy and depression 458 in cross-cultural survivors of traumatic brain injury. J Neuropsychiatry Clin Neurosci 459 2004;16(4):435-42. https://doi.org/10.1176/jnp.16.4.435 460 https://doi.org/10.1682/JRRD.2015.07.0143 https://doi.org/10.4274/gulhane.galenos.2021.1460 https://doi.org/10.1016/j.jcrc.2015.02.010 https://doi.org/10.1111/j.1365-2753.2011.01800.x https://doi.org/10.1111/j.1365-2753.2011.01800.x https://doi.org/10.1177/0269216311419987 https://doi.org/10.1097/HTR.0b013e31826674d6 https://doi.org/10.1176/jnp.16.4.435 24. Daradkeh G, Essa MM, Ali AL, Al-Adawi S, Koshi R, Arabawi S, et al. Assessment 461 of Nutritional Status and Macronutrients Adequacy of Traumatic Brain Injury 462 Patients Attending Tertiary Health Care in Oman. Acta Scientific Nutritional Health 463 2020; 4(2):144-50. https://doi.org/10.31080/ASNH.2020.04.0625 464 25. Al-Balushi N, Al-Alawi M, Al Shekaili M, Al-Balushi M, Mirza H, Al-Huseini S, et 465 al. Predictors of burden of care among caregivers of drug-naive children and 466 adolescents with ADHD: A cross-sectional correlative study from Muscat, Oman. J 467 Atten Disord 2019; 23(5):517-26. https://doi.org/10.1177/1087054718808 468 26. Chan MF, Al‐Dhawyani AM, Al Hinai K, Al‐Azri M. A cluster analysis to explore 469 the burden of primary caregivers of children with cancer in Oman. J Spec Pediatr 470 Nurs 2022; 27(3): e12389. https://doi.org/10.1111/jspn.12389 471 27. Lieshout K, Oates J, Baker A, Unsworth CA, Cameron ID, Schmidt J, Lannin NA. 472 Burden and preparedness amongst informal caregivers of adults with moderate to 473 severe traumatic brain injury. Int J Environ Res Public Health 2020; 17(17): 6386. 474 https://doi.org/10.3390/ijerph17176386 475 28. Farajzadeh A, Akbarfahimi M, Maroufizadeh S, Miri Lavasani N. Factors associated 476 with quality of life among caregivers of people with spinal cord injury. Occup Ther 477 Int 2021. https://doi.org/10.1155/2021/9921710 478 29. Backx APM, Spooren AIF, Bongers-Janssen HMH, Bouwsema H. Quality of life, 479 burden and satisfaction with care in caregivers of patients with a spinal cord injury 480 during and after rehabilitation. Spinal Cord 2018; 56(9):890-99. 481 https://doi.org/10.1038/s41393-018-0098-7 482 30. Kreitzer N, Kurowski BG, Bakas T. Systematic review of caregiver and dyad 483 interventions after adult traumatic brain injury. Arch Phys Med Rehabil 2018; 99(11): 484 2342-2354. https://doi.org/10.1016/j.apmr.2018.04.016 485 31. Brickell TA, Wright MM, Lippa S, Sullivan JK, Bailie JM, French LM, et al. 486 Resilience is associated with health-related quality of life in caregivers of service 487 members and veterans following traumatic brain injury. Quality of Life Research 488 2020; 29(10):2781-92. https://doi.org/10.1007/s11136-020-02529-y 489 32. Bermejo-Toro L, Sánchez-Izquierdo M, Calvete E, Roldán MA. Quality of life, 490 psychological well-being, and resilience in caregivers of people with acquired brain 491 https://doi.org/10.31080/ASNH.2020.04.0625 https://doi.org/10.1177/1087054718808 https://doi.org/10.1111/jspn.12389 https://doi.org/10.3390/ijerph17176386 https://doi.org/10.1155/2021/9921710 https://doi.org/10.1038/s41393-018-0098-7 https://doi.org/10.1016/j.apmr.2018.04.016 https://doi.org/10.1007/s11136-020-02529-y injury (ABI). Brain Inj 2020; 34(4):480-88. 492 https://doi.org/10.1080/02699052.2020.1725127 493 33. Norup A, Snipes DJ, Siert L, Mortensen EL, Perrin PB, Arango-Lasprilla JC. 494 Longitudinal trajectories of health-related quality of life in Danish family members of 495 individuals with severe brain injury. The Australian Journal of Rehabilitation 496 Counselling 2013;19(2):71-83. https://doi.org/10.1017/jrc.2013.12 497 498 https://doi.org/10.1080/02699052.2020.1725127 https://doi.org/10.1017/jrc.2013.12 Figure 1: Study flow 499 Abbreviations: FCs, Family Caregiver; TBI, Traumatic Brain Injury 500 S c re e n in g E li g ib il it y In c lu si o n A n a ly si s Total number of FC of TBI Patients Screened at the time of Discharge n= 63 Not eligible FCs = 17 (Paid to provide care = 11; Patient not willing to participate = 4; FC is also a trained health care professional = 2) Total number of eligible FCs (and their patients) = 46 Patient status changed and transferred to another unit = 10 Total number of FCs Consented = 36 Total number of patients with TBI= 36 Total number of FCs at the time of discharge = 36 n Total number of patients with TBI at the time of discharge = 36 Total number of FCs after 8 weeks = 35 Total number of patients with TBI after 8 weeks = 35 (Death = 1) Table 1: Characteristics of the family caregivers and patients with TBI 501 Characteristic FCs (n = 36) Patients (n = 36) % % Gender Male Female 47.2 52.8 52.8 47.2 Age in years 18-40 ≥ 41 69.4 29.6 25 75 Marital status Single Married Separated/divorced/widowed 8.3 88.9 2.8 13.9 63.9 22.2 Level of education ≤ High school ≥ Post-secondary 80.6 19.4 94.4 5.6 Employment status Full-time Unemployed 61.1 38.9 36.1 63.9 Relationship to patient Parent Spouse Child Sibling Legal guardian 41.7 16.7 27.8 11.1 2.8 Cause of injury or patient diagnosis Fall Motor vehicle accident Assault Other forms of trauma 36.1 50 11.1 2.7 Glasgow coma scale on admission 9-12 (Moderate) ≤ 8 (Severe) 47.2 52.8 Glasgow coma scale at the point of discharge Mild (14–15) Moderate (9–13) 64.2 35.8 FCs, family caregivers502 OMAN FAMILY CAREGIVERS OF TBI PATIENTS 20 Table 2: Symptom Profile of Patients with TBI at the Time of Discharge 503 Symptom Rating (n =36) M ± SD No Difficulty Mild Difficulty Moderate Difficulty Severe Difficulty % % % % Loss of muscle strength (paralysis, limited physical mobility, or poor coordination) -- 2.8 19.4 77.5 4.75 ± 0.50 Blurred or loss of vision 11.1 11.1 25 52.8 4.08 ± 1.30 Loss of hearing or ringing in the ears 19.4 11.1 16.7 52.8 3.83 ± 1.56 Loss of memory and concentration 8.3 16.7 11.1 63.9 4.22 ± 1.25 Change in speech or difficulty being understood 2.8 11.1 11.1 75 4.56 ± 0.91 Mood problems (include depression, anxiety, denial, and frequent change in emotion) 8.3 8.3 16.7 66.7 4.33 ± 1.20 Insomnia 22.2 8.3 13.9 55.6 3.81 ± 1.64 Changes in behavior (aggression, anger, impulsiveness, etc.) 13.9 11.1 22.2 52.8 4.00 ± 1.39 Ability to live independently -- -- 2.8 97.2 4.97 ± 0.17 504 OMAN FAMILY CAREGIVERS OF TBI PATIENTS 21 Table 3: Changes in Patient Disability, Caregiver Quality of Life, and Caregiving Preparedness at 8 Weeks Post-discharge (n = 35) 505 Variable level n M SD SEM t p-value MD 95% CI TBI patient’s disability rating scale score At the time of discharge 35 16.74 4.15 0.70 2.33 0.026 1.40 0.18-2.62 At eight weeks post- discharge 35 15.34 5.00 0.85 Family caregiver’s caregiving preparedness At the time of discharge 35 19.74 9.04 1.53 -4.33 < 0.001 -3.00 -4.41 - -1.59 At eight weeks post- discharge 35 22.74 6.71 1.14 Family caregivers’ SF-12 Physical Quality of Life (PQoL) At the time of discharge 35 71.91 25.69 4.34 1.02 0.316 2.98 -2.97 – 8.92 At eight weeks post- discharge 35 68.93 27.66 4.68 Family caregivers’ SF-12 Mental Health Quality of Life (MHQoL) At the time of discharge 35 63.05 16.96 2.87 2.11 0.042 4.64 0.18 – 9.11 At eight weeks post- discharge 35 58.41 17.98 3.04 SEM, standard error of the mean; MD, mean difference 506 OMAN FAMILY CAREGIVERS OF TBI PATIENTS 22 Table 4: Predictors of Caregivers’ Quality of Life at 8 Weeks Post-discharge 507 Dependent variable Factor Unstandardized Coefficient t p-value 95% CI β SE Family caregivers’ SF-12 Physical Quality of Life (PQoL) Constant 152.26 23.69 6.43 < 0.001 103.81-200.71 Family caregiver age (years) -1.59 0.39 -4.14 < 0.001 -2.38 - -0.81 Patient age (years) 0.44 0.17 2.64 0.013 0.10 – 0.78 Family caregiver employment status -13.27 3.66 -3.62 0.001 -20.75 - -5.78 Severity of mood problems (depression, anxiety, denial, and frequent change in emotion) -10.34 3.16 -3.27 0.003 -16.80 - - 3.88 Severity of insomnia 5.36 2.29 2.34 0.026 0.68 -10.04 Family caregivers’ SF-12 Mental Health Quality of Life (MHQoL) Constant 228.64 73.53 3.22 0.004 78.02 – 379.27 Family caregiver age (years) -0.94 0.29 -3.29 0.003 -1.53 - -0.36 Patient age (years) 0.45 0.16 3.96 < 0.001 0.22 – 0.69 Family caregiver’s caregiving preparedness 0.59 0.29 2.02 0.050 0.00 -1.20 Severity of mood problems (depression, anxiety, denial, and frequent change in emotion) -11.61 3.18 -3.65 0.001 -18.13 - -5.09 Severity of behavior changes (aggression, anger, impulsiveness, etc.) 8.33 2.86 2.91 0.007 2.47 – 14.20 Severity of the inability to live independently -13.39 14.04 -2.24 0.034 -60.16 - -2.63 CI, confidence interval; SE, standard error 508