Introduction
Family caregivers are an asset to the medical community and to individuals with traumatic brain injuries (TBI) resulting from traffic crashes. There is now a consensus that TBI caused by road accidents imposes a severe burden on caregivers (Kjeldgaard et al., 2023). Individuals diagnosed with TBI can experience a multifaceted presentation that often includes physical, emotional, cognitive, behavioural and significant personality changes (Chelly et al., 2019). These symptoms can persist for six months or longer and are highly resistant to pharmacotherapy (Al Alawi et al., 2016; Kelly et al., 2023). The literature shows that the superior care provided at home after hospital discharge plays an important role in the quality of life and subsequent rehabilitation of individuals with TBI, supporting their integration into their social community and daily living. However, over time, family caregivers have earned the title of “hidden patients” as they often neglect their own self-care and grief to fulfil their responsibilities to their ailing family member (Sambasivam et al., 2019; Holliday et al., 2022).
Globally, road traffic crashes can transform family members into family caregivers for an individual who has suffered a critical injury such as a TBI, often without prior training or preparation (Kanmani et al., 2019; Oyesanya et al., 2021). Lack of preparation increases the burden on the family caregiver (Roslin et al., 2023). The experiences of family caregivers are largely psychosocial and are now understood to be influenced by the environment in which they live and by personally held sociocultural belief systems (Hanafy et al., 2020). This suggests that the experience of family caregiving varies between ethnicities based on core beliefs, religion, family piety or obligation, and gender (Corallo et al., 2019). The literature indicates that family caregivers adjust to physical impairments resulting from TBI by managing and controlling the environment to suit the individual’s needs. However, the unpredictability and uncertainty of cognitive and behavioural changes after TBI are often more difficult for caregivers to manage and adjust to (Liang et al., 2016; King et al., 2020). Although there has been a greater focus on family caregivers of individuals with TBI resulting from road traffic crashes in the West, due to the increase in TBI from road crashes in Arab countries, there is growing interest in understanding the experiences and coping stories of caregivers in the Middle East.
Research from Euro-American populations indicates that family caregivers of individuals with TBI lead largely inactive lives, are socially withdrawn and isolated, experience financial stress, and tend to engage in negative, catastrophic, and guilt-ridden thought processes (Ponsford & Spitz, 2015). Family caregivers appear to rely on available support systems to cope with these changes (Damianakis et al., 2016). Additionally, family caregivers expressed frustration and exhibited avoidance behaviours while continuing to fulfil their caregiving duties and provide for their families (Elbaum, 2019). Given that the existing literature on caregiving is predominantly from Western populations, there is a significant dearth of research on caregiving in Arab or Middle Eastern contexts, where cultural nuances have far-reaching implications for social behavior.
Oman is an Arab Islamic country with a rich heritage and culture. Over the past two decades, the country has focused on strengthening safety regulations to reduce the rate of road traffic incidents (Jadaan & Almatawah, 2016). Although the country has improved road safety and reduced the rate of road crashes by 40% in 2018, the care of people with TBI remains a significant concern, as symptoms often persist for extended periods after hospital discharge.
Despite advances in modern medicine, individuals with brain injuries in Oman remain hospitalized as inpatients for an average of 15 days (Al-Kashmiri et al., 2015). In this region, medical professionals are treated as Hakim, meaning “all-knowing” or ‘wise’ (Chamsi-Pasha & Albar, 2016). Post-injury rehabilitation includes physical therapy and occupational therapy (Al-Kashmiri et al., 2015). Rehabilitation facilities that address post-TBI cognitive, emotional, or behavioral deficits are limited or unavailable (Al-Kashmiri et al., 2015). Patients with cognitive and emotional disorders are referred to the local government hospital. However, due to stigma and cultural constraints surrounding the expression of post-concussion syndrome and other neurocognitive deficits, only a few attend or follow up with this service (Al Alawi et al., 2016; Ebrahimi et al., 2018). Therefore, to access more options in healthcare or avoid stigma, many families travel outside the country for post-TBI rehabilitation or resort to complementary and alternative treatments (Al Adawi et al., 2016).
More than 80% of patients in Oman prefer to seek treatment abroad due to cost-effective care, higher-quality health care and services, and the desire to obtain a second opinion on their diagnosis (Al-Hashar & Al-Zakwani, 2018). However, this option is likely limited to families with financial means and the ability to travel internationally for medical emergencies. As a result, many victims of TBI continue to experience debilitating and intractable cognitive, behavioural, and emotional complications.
Although Oman ranks among the highest in road traffic crash rates in the Gulf region, formal support systems for family caregivers are scarce. As medical professionals appear to focus more on physical ailments, their attention to education and practical and emotional support for caregiver families varies (Al-Kashmiri et al., 2015). Therefore, in the absence of structured healthcare system, caregiving often falls to the nuclear family, extended family, or kindred (Roslin et al., 2023).
The institution of the family is significant one in a collectivistic society such as Oman. In Oman, patients often prefer family care and the opinions of family members over professional healthcare, due to the trust placed in family members (Al Adawi et al., 2016). Families in Oman value being involved in the treatment plan for their ailing family member, as an illness is regarded as a crisis not just for the individual, but for the family and the community at large (Al Balushi, 2019). Similarly to the Hispanic community in the West and many collectivistic cultures in the East, Omani culture endorses care for the young, elderly, or an ailing family member as one’s ‘duty’ (Sung et al., 2013), and this responsibility extends to nuclear and extended family members. In addition, men assume a more proactive role in medical decision-making within the formal healthcare system, while women are primarily responsible for care provided at home (Al Balushi, 2019). Although this trend is changing as women in Oman increasingly enter the workforce, their family responsibilities still take priority over their employment or social status (Goveas & Aslam, 2011).
Although modernization has shifted family structures from large joint families to nuclear family units, interdependence among family and community members remains encouraged and expected. To understand symptoms and the overall treatment plan, Omani residents often seek religious interpretations and family advice and opinions (Opare-Henaku & Utsey, 2017). Psychiatric symptoms are often misunderstood or attributed to supernatural causes (Islam & Campbell, 2014) and are considered taboo and a mark of shame (Hamid & Furnham, 2013). This prevents many families from seeking help for psychological or emotional disturbances that occur after TBI. Furthermore, psychiatric distress in Oman is somatised rather than vocalized, as voicing discontent may be considered improper (Al-Kashmiri et al., 2015).
Several sociocultural factors in Oman can shape the experiences of family caregivers. In this Arab country, the majority of care for people with TBI is provided by family members (Qannam et al., 2017). However, the experiences of these family caregivers in Oman remain poorly understood. Their burden and stress and how they cope with the ordeal have not been studied.
Given the complexity of TBI and the importance of supporting and counseling family caregivers in Oman, the present study aimed to understand the experiences of family caregivers of individuals with TBI related to road accidents in Oman. A qualitative methodology was adopted because it offers an exploratory approach to understanding this under researched phenomenon (McCusker & Gunaydin, 2015). Participants were family caregivers residing in rural areas of Oman’s capital city who were closely involved in providing ongoing support and follow-up care for their relative with TBI in the Department of Neurosurgery in a tertiary hospital in Oman. Quantitative studies of caregivers have been criticised for failing to account for contextual and environmental factors that shape their experiences (Roslin et al., 2023). The findings of this study will help improve support for caregivers of people with TBI in Oman and other Middle Eastern regions with similar cultural and historical background.
Method
Participants
Fourteen caregivers (9 men and 6 females) participated in the study. They included eight parents, two spouses, two siblings, an adult child and a cousin of individuals with TBI. Regarding education, seven family caregivers completed high school, five completed primary school, one completed secondary school, and one completed informal education in Islamic schools. Regarding occupational status, seven caregivers were employed, four were unemployed or retired, three were homemakers, and one was a student. All participants were married, and one reported that her husband practiced polygamy, which is legal in Oman and aligns with social customs. Thirteen of them had to care for 5 to more than 10 individuals, in addition to the individual with TBI. Only one participant had no other dependents. Nine participants were the primary caregiver, three reported that their female spouses were the primary caregiver, and three reported that the role of caring for the individual with TBI was a task shared by various family and/or community members, with everyone having a set of duties.
Measures
Demographic Form
A demographic form included details on their age, level of education, occupational status, health status, and marital status.
Interview
The interview probes covered the caregiver’s initial reactions and experiences at the hospital, their post-hospital care, and their challenges and coping strategies. First, they were asked to share their thoughts and feelings at the time their loved one was hospitalized. They were asked about their understanding at that time, the help provided by hospital staff, whether it was appropriate, and if not, what the hospital staff could have done better. Second, they were asked to share their thoughts and feelings when their loved one was discharged. They were asked about the expectations of family members after their loved one’s discharge from the hospital, whether the hospital prepared them for TBI and its care and, if not, what the hospital staff could have done better. Third, they were asked what it was like to care for the person with TBI at present. They were asked to provide details of their care routine, its impact on their lives, their challenges, and their sources of strength.
Procedure
Ethical clearances were obtained from the Ethics Committee of Queensland University of Technology (1700001048) and the Ethics Committee of the Ministry of Health, Sultanate of Oman, Medical Research Ethics Committee (MREC), College of Medicine & Health Sciences, Sultan Qaboos University (REF. NO. SQU-EC/5/17 MREC#1508). Using purpose sampling, data were collected in May 2019 from the Outpatient Department of the Neurosurgery Ward at a tertiary hospital of the Ministry of Health in Oman.
The first author received details on 73 patients scheduled for follow-up visits. An Arabic-speaking local psychologist assisted the first author by calling the Arabic-speaking caregivers and inviting them to participate in the study. Information about the study was provided, and volunteers were scheduled for an interview with the first author and the research assistant. Overall, 16 family caregivers agreed to participate in the study; two withdrew due to time constraints on the day of the appointment. On the scheduled appointment date, the local psychologist verbally informed the participants about the study and provided them with the information sheets. Participants were assured of complete anonymity and the right to withdraw from the study at any time. The audio recorded data were translated and transcribed for analysis.
After obtaining informed verbal and written consent from both the caregiver and the person with TBI, the first author conducted the interviews with the help of the local psychologist, who served as an interpreter. The qualitative interview lasted approximately 60 minutes and participants were offered refreshments or breaks. During the interview, the local psychologist translated responses to the first author, who guided the interview. At the end of the interview, the first author reminded the caregiver that they could withdraw from the study and add or remove statements by calling the number provided on the information sheet within two weeks of the interview. After this period, the interviews were reviewed, translated, transcribed, and analysed for this study.
Data Analysis
The responses of 14 family caregivers, who did not wish to withdraw from the study or revise their statements, were translated into English by the research assistant. The translation was then back translated by a volunteer translator to confirm accuracy. The first author analyzed the data using the six phases of thematic analysis (Braun et al., 2018). Transcripts were read multiple times to enhance familiarity with the data and identify codes. These codes were merged into larger themes using NVIVO 12. The first author met with the second author to review the themes. The themes were then defined and labeled. To assess the accuracy of the themes, inter-rater reliability was tested with the help of the remaining co-authors, who reviewed three transcripts and cast themes into categories. The themes were reviewed, subsequently defined, and reported in this study.
Reflexivity
Given their personal and professional backgrounds, the authors were well placed to interpret the data. The first, second and fifth authors were from non-Western cultures and familiar with the nuances of Middle Eastern culture. The second and fifth authors were Muslims; furthermore, the fifth author was from Oman. All authors, except the second, worked in neuropsychology or head injury settings. The first and second authors were clinical psychologists who provided therapeutic interventions to non-Western clients with mental health issues.
Findings
The themes highlighted the experiences of family caregivers at two points in time after the accident, as well as their challenges and coping strategies. The first theme focused on the hospital experiences that the family caregivers underwent while the individual who survived the traffic crash was in the Intensive Care Unit (ICU) and was later diagnosed with TBI. This stage encompassed emotions, interactions with family and clinicians, and the discharge process. The second theme was the transition stage from the hospital to the home and the lifestyle changes experienced by family members. The third theme reflected the challenges facing family caregivers in caring for the individual with TBI, both long-term and short-term. The fourth theme revealed the ongoing use of coping methods by family caregivers to continue with their lives while taking on the added role. These challenges and coping methods were found to have a major impact on perception of the experiences of caring for an individual with TBI in Oman.
Theme 1- Hospital Experiences, Admission and Discharge
Although two of the participants were involved in the traffic accident, others learned about the involvement of the person with TBI in an accident through social media messaging platforms or phone calls from family members or hospital staff in Oman.
Initial reaction
All participants expressed shock when learning that their relative had been injured in a traffic crash. They felt “helpless”, “depressed”, “worried”, “scared” or “terrified.” Many participants felt a sense of foreboding that the individual may have already perished or would eventually die from their injuries. A 54-year-old father said: “I thought Allah took away my child… We started to prepare for the worst. We thought we will never see our daughter again.”
Quality of communication with Clinicians
Although participants were satisfied with the quality of care their loved one with TBI received in the ICU, they felt unaware of the ongoing condition. They felt that they did not receive updates about their loved one as frequently as they would have preferred. This perceived lack of communication contributed to feelings of frustration and a sense of limited awareness of the implications of a TBI or the available or executed treatment plan. One participant reported:
For a whole week after my son arrived at the hospital, I had no idea why he was going through so many treatments and surgeries. No one explained how he was or what happened… They were not allowed to talk to me about the patient! (63-year-old father).
Perception of Hospital Facilities
The participants continued to wait outside the ICU despite the nurses’ request to leave. They said leaving the individual with TBI in the hospital felt like abandoning their relative. A 28-year-old cousin of an individual with TBI who participated in the study said: “While our brother is in there, we cannot leave him alone! They cannot ask that from us.” Caregivers expressed shock at the limited seating and other facilities outside the ICU, which made waiting uncomfortable. A participant said:
I asked for a sheet to cover myself under the cold air conditioners, but they never helped me. When I was tired, I wanted to lie down but the hospital floor was not clean. (63-year-old father).
Feeling of abandonment
Once the individual with TBI was transferred from the ICU to the ward, most participants were expected to provide care to their loved one, with support of nursing staff and visits from doctors and surgeons during medical rounds. However, several caregivers reported feeling ignored and neglected by the clinicians and expressed dissatisfaction with the quality of care their loved one with TBI received. A 36-year-old mother with two sons in the ICU recalled that medical staff expected one of her sons to die from his injuries. She said: “I think he stayed for 15 days without a file…. They told me that nothing will save him… that’s why they left him without any treatment… they ignored a wound on his leg, which got infected eventually.”
Perceived Insensitivity of Clinicians
Following the traffic crash, during the distressing period when the person with TBI was admitted to the ICU, family caregivers reported feeling “left in the dark,” “ignored,” and “uncared for” by hospital staff. Some caregivers felt anger and shock at the perceived insensitivity in anticipating the patient’s death. A 52-year-old father whose son was in very critical condition after the crash recounted: “I begged (the doctor) to come see him, but he did not respond.”
However, some participants recalled “comforting” conversations with the clinicians. They perceived the hospital staff as highly sensitive and engaged in open, frank conversations with them. A 40-year-old mother dismissed any negative memories, saying: “I am fully satisfied with the care that was provided to my daughter… the most important person was (the patient)… the way they treated us was not as important.”
Seeking Medical Care Abroad
Due to negative perceptions of the quality of care in the hospital in Muscat, most participants considered or sought treatment outside of Oman, expecting better healthcare, the desired result and potentially lower costs. These decisions were often made in consultation with other family members, sometimes disregarding the doctor’s advice. However, in certain cases, nursing staff or doctors advised the family caregiver to take the individual abroad for further care. The 36-year-old mother of two individuals with TBI mentioned above recalled, “A nurse advised me to take my son abroad. She told me that if I did not take my son abroad for treatment, he would die here. One of the fathers, a 41-year-old, said: “We went to (another country) with my son when he was not speaking and walking, where they offered so many types of treatment. He came back walking and speaking… that was the result of our medical trip (abroad).”
Reaction and Preparedness for discharge from Hospital
All participants reported feeling relieved and thrilled about the prospect of bringing their loved one with TBI home. A 52-year-old father said that although he was exhausted after spending so many months in the hospital, he was happy to return home and believed that “only family can do certain things, which even the doctors cannot do.” Several participants believed that the role in healthcare is uniquely significant compared to that of the clinical team. Unlike overstretched doctors and clinical staff who must attend to many patients, the family could devote all their attention to their ill loved one. The individual with TBI was welcomed back to the home or to their village with celebration by relatives and community members, as it was considered a joyful occasion. A participant, a cousin of the person with TBI, said, “The house had light inside, because my brother returned.”
Although there was an overwhelming sense of joy when returning home, most family caregivers reported feeling unprepared and nervous because they were not given enough information about the care of the individual with TBI or about TBI itself. The 66-year-old father said: “The doctors did not tell us anything… because they are very busy. But I cannot help wishing that they would do something to support me.”
Theme 2: Experience of Caregiving at Home
Transition to Home from the Hospital
Participants generally did not expect structured medical follow-up for the individual with TBI after hospital discharge. They perceived this as posing potential risks due to limited information, preparation, and post-discharge support. The 41-year-old father said: “Some of the early issues we faced when we returned home could have been easier if the hospital had called to check on us, or if I could have called them to clarify my doubts.”
Initial Adjustment to Role of Caregiving
Several participants were not prepared for the emotional, behavioural, and cognitive changes commonly observed after TBI, as they did not anticipate that hospital discharge would not necessarily indicate complete recovery. A 33-year-old husband, also a father of four children, commented on his spouse with TBI: “I wish they would give us more information about how aggressive the changes would be. When we returned home, it felt like everything was fine. But then she would get angry for everything… he was crying and he was not eating, not sleeping. A 44-year-old mother who has been a family caregiver for more than 17 years said: “When we left the hospital, we were alone… one time the dosage (of his medication) was too strong, and he was in a coma at home for 2 days and I did not know that he was in a coma.”
Family Participation in Decision Making
Most participants preferred to make medical decisions in consultation with their relatives and trusted family members rather than leaving them to medical professionals. These decisions involved follow-up appointments with the physiotherapist, the treating surgeon, or the physician; the timely provision of medication; and seeking opinions from other physicians. The 44-year-old mother said: “Sometimes the doctors know that my son does not need the medicine! So, I usually discuss it with my family, or take some time to think about it before deciding what to do.”
Self-Learning
Several participants reported making decisions about medical treatment based on information they found on social media platforms and the internet. One participant stated:
Sometimes at night I would wake up and see my wife on YouTube, looking at videos for treatment… then the next day she would tell me, oh we should try this herb, or we should do yoga. She would tell me stories about patients and families with TBI from America or Europe, and what they did (54-year-old father).
Re-identification of self-identification
Some family caregivers experienced a conflict between their previous independent identity and the new role they had to assume. The 44-year-old long-term caregiving mother said her family refers to her as “the mother of the individual with TBI”, rather than by her own name. Another mother (36 years old) shared a similar experience, saying, “I no longer feel like myself. I have not slept, gone to the salon or looked after myself since all this began.”
Theme 3: Challenges
Roles Defined by Gender
According to the participants, care expectations were associated with the gender of the individual with TBI and the family caregiver. Predominantly, male participants performed instrumental tasks, such as generating income or transporting the individual with TBI from the hospital to home. The women were expected to care for the individual with TBI at home, provide meals, support exercises, and provide education. In the cases where the person with TBI was male, the male caregiver would help with personal hygiene (toileting, showers, and dressing) and physiotherapy. The women in the study, such as the 26-year-old wife, described the social pressure, saying: “My family decided that I am the one who would be completely responsible for him. I did it all on my own, without any help at all.” Male participants shifted the responsibility of care to women at home and thus felt less pressure. A participant indicated:
At home, his mother takes care of him. She supported him when he needed to go to the bathroom. She fed him. She did everything… and I just felt like a bird that flew out of its cage. She cared for him more than anyone else (a 63-year-old father).
Time Management
The participants explained that in the early stages of assuming the role of family caregiver immediately after hospital discharge, they spent most of their time tending to the needs of their loved one with TBI and could not make time for their own needs. An adult sibling of the individual with TBI had to balance his time between his consanguineous family and his family by affinity since his brother’s injury: “I try to balance with both my families… but I am really trying. It is really hard to balance both houses.”
Changes in Social Life
All participants reported that after the individual with TBI was discharged and placed in his care, their ability to participate in social life decreased significantly. They avoided or were unable to attend social gatherings, such as weddings or Eid parties (Islamic Festival), due to their responsibility for caring for the person with TBI. For example, a 52-year-old father said, “If we are invited to any family gathering, we cannot go. Transport is difficult. My son is a fully grown man. Therefore, carrying him and moving around is not easy. Our entire family has to change their life for him. However, caregivers were able to resume these social activities with adjustments, depending on the recovery rate.
Rehabilitation and Medical Management
Participants reported that the Oman medical system does not follow up with individuals with TBI after they are discharged from acute care, leading to anxiety and poor adjustment. Appointments for physical therapy or follow-up with neurologists or neurosurgeons are scheduled in the outpatient department. A 44-year-old mother recalled: “When we left the hospital, we were by ourselves. No one checked on us, no one asked about us. They took care of us well while were in the hospital. Once we left, we were on our own.”
Financial Strain
Although family caregivers were able to access financial resources through government support or from their family and community, most of the participants reported the burden of financing the treatment required for the individual with TBI during hospitalisation and after discharge. The 54-year-old father said “I am retired now, and treatment is very expensive… but our family has helped a lot… they always said that money should not be the reason why our son not getting some type of treatment… so money has been okay for us, but not easy at all”.
Impact of Caregiving on Interpersonal Relationships
Siblings. Although the siblings conducted themselves in what they considered “their duty to the family,” conflicts and disagreements still emerged. Parents reported that although they were able to be patient with changes in behavior and temperament after the siblings experienced frustration. A 33-year-old brother who participated in the study said: “My brother has duties and responsibilities, and he should do it. He cannot be this lazy”. They also felt that they had to help ease the burden on their parents in caring for their sibling with TBI. One of the adult siblings who participated in the study explained his role to his family: “My parents are too old to care for an adult man like my brother. So, I decided to do it. I can help them like that.”
Spouses. Although most caregivers did not discuss aspects of their marriage, those who did report strained relationships with their spouses due to the burden of caregiving and the lack of quality time together. The participants reported that their marriages failed as their spouses drifted away. In other cases, the married person with TBI experienced the termination of their marriage when their spouse abandoned them and formed ties with someone else. The 40-year-old mother described both her own marital distress and the divorce of her daughter with TBI, a single mother of a 2-year-old son. She said: “His husband did not want to take her out or to her appointments… He said he does not want to be responsible for her.” Of her own marriage, she said:
My husband has a second wife… so he has another life… in the beginning, he used to ask about her, now nothing… I tell my daughter all the time… Your family will always be there for you… but not your spouse… Your family will be your strength… (40-year-old mother).
Another 44-year-old mother said that since her daughter was diagnosed with a brain injury, she has been anxious that her husband might take a second wife: “I no longer can take care of my skin, my face, or my body. I am afraid he will marry another and leave me alone.” A 33-year-old husband who participated in the study said: “The TBI destroyed our life … I know that I can marry another if I want to.”
Other Dependents. Participants described their commitment to other dependents in their care, including elderly parents, spouses, and children. Family caregivers felt they could balance the needs of their dependents, yet were still affected by the weight of their responsibilities. The 41-year-old father described his responsibilities as challenging: “I need to take care of him, as well as his brothers and sisters. He is not the only one who needs me. Sometimes I feel pressure, strain, and tension. I fight a lot. I get angry quickly. Sometimes it is all too much for me.”
Anxiety and Concern for the Future
The study reported that since the traffic incident and subsequent TBI diagnosis, they became more anxious and concerned about the welfare of other relatives and the future of the individual with TBI. The 63-year-old father fears for his son: “Who will take care of him after I am gone? No one else can manage him. He will surely die or be abandoned.”
Social Stigma
Some participants expressed concern that their loved one with TBI, due to their condition, could unknowingly harm themselves or offend members of the extended family or community. The 63-year-old father recalled his neighbour’s reaction to his son’s behaviour: “He takes people’s cars and wrecks them. He gets into fights. Our neighbours have reported him to the police many times. They don’t understand that he is sick.”
Lack of trust in the Current Medical System in Oman
Participants who perceived the medical care provided in the Oman hospital as inadequate later expressed a diminished sense of trust in the healthcare system. A 54-year-old father said, “How can I trust them after how they treated my son and me? They must improve their services and be kind to families.”
Theme 4: Coping Techniques
Cultural, Religious, and Personal Values
Participants reported seeking comfort and rationalising negative experiences through their religious beliefs and the teachings of Islam, including the belief in predestination (قدر), defined by the Oxford English Dictionary as “the determination of an outcome or a course of events in advance by divine will or fate” (Oxford University Press, n.d.). Some caregivers, when hearing the news of the accident and diagnosis of TBI, recalled their faith and sought comfort, saying: “Allah has written the day of death for everyone, and for everyone it will come.” Participants also shared personal belief systems that helped them cope with the pressures of caring. The 28-year-old cousin believed that it was his duty to care for family members in need: “In our culture, it is written that we are one hand, a fist. When something happens to anyone in our community, whether family or not, we should help each other.”
Marriage is a significant milestone in Arab families, and some family caregivers sought suitable alliances for their loved ones with TBI. This was particularly evident among families whose loved ones had been diagnosed with mild TBI. The families were unaware of or dismissed subtle behavioral changes in their loved one with TBI. The 64-year-old father regretted his decision to have his son marry and said: “I thought it might be a good idea for him to get married. As time passes, I can see that it does not help anyone involved.”
Family and Community Support
Participants acknowledged the role of their extended family and community members as they adjusted to their new role as caregivers for the individual with TBI. Support from the extended family and the community ranged from practical assistance to financial support. One mother shared:
My family has been with me throughout this journey. My mother and sisters advise me so much. They give me hope. They teach me how to manage everything… I owe everything to them… when I could not do something, they would step in for me… they helped me with my baby, with food, with my house… they did everything that I was unable to do (Mother).
Another caregiver mentioned that her family played a significant role in the financial care of her son: “My husband would get money in his bank from anonymous family members or friends because they wanted to help… or some would give money to my husband’s hand and say, ‘this is for (the individual with TBI). His uncles and aunts opened a bank account just for his tuition.”
Discussion
The present qualitative study explored the experiences of family caregivers of individuals with TBI who were involved in a road traffic crash in Oman. In many ways, the experiences of family caregivers of Oman mirrored those in Western countries. However, notable differences emerged, and unique features shaped by sociocultural factors such as collectivism, religion, and gender became apparent.
Consistent with the literature, the challenges faced by Omani family caregivers began immediately after the traffic crash and continued through temporary hospitalisation and long-term home care (Nalder et al., 2012). Like other caregivers, family caregivers in Oman experienced shock and grief when learning their relative was in emergency care after an accident and were preoccupied with thoughts of the individual’s imminent death (Turner et al., 2011).
There was general dissatisfaction with the support and guidance provided by hospital staff, as only a few clinicians were perceived as supportive (Ebrahimi et al., 2018). According to existing literature, family caregivers described this stage as particularly difficult and distressing, marked by a heightened sense of urgency and loss of control that often accompany emergency healthcare situations (Hayes et al., 2023). Healthcare professionals focused on attending to the patient’s immediate needs and managing multiple clinical responsibilities. However, caregivers perceived this as a gap between clinical priorities and their own expectations, as families express a desire for greater involvement and communication in the care process (Blake et al., 2025).
According to the findings of Al-Hashar and Al-Zakwani (2018), the participants preferred to seek critical care for their family members abroad. Considering that the transition from hospital to home is an important and carefully managed period in developed countries (Qannam et al., 2017), the experiences of caregivers in Oman suggest that they would have benefited from structured guidance and instruction regarding the condition and complications of TBI during this time (Devakirubai et al., 2023). However, at the time of discharge, families experienced mixed emotions. Despite feeling relieved that their loved one was returning home, they also felt anxious due to a lack of preparedness (Dy et al., 2008). Caregivers and family members had a limited understanding of how to manage behavioural and personality changes after ITBI, but all family members were expected to cooperate and tolerate these changes. On some rare occasions, disruptive behaviours of the person with TBI caused shame and embarrassment for the family, as suggested by findings of existing research (Kreutzer & Marwitz, 2017).
At the hospital, male family members played an instrumental role in hospital care by providing practical and financial support (Lee & Tang, 2015). The findings indicated that the caregiving role shifted to women in their family once the person with TBI was home. According to the existing literature, women take on multiple roles, such as mother, wife, sister or daughter, and are burdened with domestic duties, as well as caring for the person with TBI (Mathias et al., 2019). Consistent with the result of previous research (Chelly et al., 2019; Neeling et al., 2023), the caregivers in Oman reported drastic changes in their day-to-day activities and a reduction in their social life. They were unable to attend even the most prominent social gatherings, such as weddings or Eid festival. They also experienced financial strain, which affected their own well-being and the care they provided to the individual with TBI (Caplan et al., 2015).
Unlike previous studies in which caregivers coped better with physical ailments than with behavioural or cognitive problems (Delalibera et al., 2020), families in Oman seemed to tolerate behavioural impairment and believed in rehabilitating the individual by encouraging them to resume daily activities. Less obtrusive behavioral or cognitive impairments, such as memory impairments or apathy or depression, often went unnoticed or were regarded as behaviors that were not harmful to others. However, physical impairments were more distressing for families in Oman, because most of the people with TBI were young males in their prime and were unable to return to work or provide for the family financially. Additionally, parents felt a sense of guilt and responsibility for their adult child with TBI, coupled with anxiety about their future and their welfare.
All family caregivers in this study reported significant changes in their family structure and interpersonal relationships (Knox et al., 2016). Marriage is a major institution in Oman’s collectivist community. Extended family members of the individual with TBI believed that a marital alliance might resolve the mental state of the individual (Bay et al., 2012; Hammond et al., 2021). In fact, if any cognitive or behavioural symptom after TBI was unnoticeable or could be concealed, the families would plan for marriage and for the individual to return to the tasks undertaken prior to the traffic accident, such as completing their education or returning to their occupation.
Unfortunately, for married couples, there appeared to be a breakdown of marriage after the injury incurred from the road traffic crash. Some spouses refused to take the responsibility of caring for their ailing husband or wife. Quality of life within the marriage declined due to the individual’s post-concussion symptoms, such as poor impulse control, insomnia, depression, and cognitive impairment (Burridge et al., 2007). Additionally, spouses of the person with TBI experienced resentment towards their debilitated partner (Kratz et al., 2017). Due to the burden of care, caregivers could not nurture their own marriage. In the case of a married woman caregiver, the husband married another woman as the wife was unavailable due to her responsibilities as a caregiver of another family member. This was possible in Oman due to the legal nature of polygamy within the orthodox Muslim tradition. This pattern of marital instability is consistent with previous literature (Kreutzer et al., 2017).
The caregivers in Oman addressed their challenges through social support and religious and cultural beliefs, which enhanced their personal strength and resilience. Consistent with collectivistic culture, financial, social, emotional and practical support from the community was a relief to family caregivers (Sabella & Suchan, 2019). In contrast to previous studies, family caregivers did not tend to experience long-term isolation (Gan et al., 2010) after adopting the role of caregiver, as there was a high degree of communal support, with relatives and families in the region visiting the ailing family member at home. Many caregivers preferred to make medical decisions for the individual with TBI after consulting with their relatives and close associates in the community (Knox et al., 2016). Caregiving emerged as a collective effort, as various members of the extended family and support network became involved at different times and stages (Liang et al., 2016).
The present findings highlighted that siblings of the individual with TBI played a vital role as caregivers. They felt a filial obligation to the entire family, in particular to their parents (Stein et al., 1998). This was different from the result based on research in the West, where siblings of individuals with TBI were apprehensive about future care they might have to provide and the expectation that their relative would deteriorate (Analytis et al., 2020). Therefore, siblings, cousins, and extended family members provided these supportive roles to immediate family members of the individual with TBI.
Contrary to previous literature, in which caregivers experience an onset of decline in their psychosocial health at the time of hospital discharge, caregivers in Oman seemed to adjust to their new role and responsibilities during hospitalisation (Turner et al., 2011). Unlike previous studies in which caregivers experienced denial about the predicament of their individual in critical care (Saban et al., 2015), the participants in this study accepted this responsibility. This behavior was driven by the social expectation that one must care for ill and vulnerable family members. Furthermore, their faith in God and their religious beliefs in a predestined plan allowed them to accept the incident and the traumatic experiences that followed. Their personal belief systems and social support helped them persevere in circumstances where professional and medical support to the person with TBI and their families was limited (Padela et al., 2011). Furthermore, religion helped caregivers hold on to “hope” when the individual with TBI was in critical care (Corallo et al., 2019).
Overall, while there are trends in the experience of caregiving in Oman that are similar to those of the previous literature, there are also differences related to culture, the type of clinical services, and the social characteristics prevalent in this region. This study has offered a glimpse into the experiences of family caregivers since its onset and has further emphasised the importance of family-focused healthcare services in this region.
Implications of the Study
This study has both theoretical and practical implications. On a theoretical level, it sheds light on various challenges faced by family caregivers of individuals with TBI in Oman. Although many findings align with previous literature, the caregiving experience also included unique features. Despite the lack of preparedness and the burden of care, family caregivers were able to use social support to mitigate feelings of isolation and religious teachings to enhance motivation (Opare-Henaku & Utsey, 2017; Roslin et al., 2023).
Allied health services in Oman can expand their role by providing advice and enhancing their services, particularly after hospital discharge. The medical system in Oman must use the families of patients as a resource by treating the discharge process as a continuum in the rehabilitation of people with TBI back into society. With the changing dynamics of family structure in Oman, particularly the decrease in average family size, the use of social networks, the establishment of interventional support groups or a telephone hotline can be considered to help families caring for an individual with TBI (Mazharul Islam, 2025). This would not only be useful to the families of people with TBI but would also create employment opportunities and enhance social welfare in general.
Limitations and future directions
Given the small sample size, the findings of this study must be interpreted with caution. Data collection in the hospital was difficult, as participants were busy attending follow-up appointments with their family member with TBI. Furthermore, this approach may not adequately represent families who do not visit the hospital or seek alternative and complementary medical treatment. Therefore, home interviews may be a more convenient method for data collection. Hindsight bias may have influenced recall of traumatic experiences, which may have affected how they were reported or perceived. This study offers only a snapshot of the caregiving experience. Therefore, it may be suggested that a longitudinal study be conducted to carefully examine and understand caregiver experiences in Oman. In qualitative studies, words are data, and the language barrier between the principal investigator and the participants posed a disadvantage in this study. Non-verbal communication or subtle cues may have been missed and the translator may not have been able to gauge the exact expressions. Knowing the local language is an advantage for collecting qualitative data, particularly in studies where the topic is complex and sensitive nature.
Conclusion
This study has addressed a literature gap by conducting a qualitative study of family caregivers of individuals with TBI in the Sultanate of Oman. The findings of this study can provide medical professionals with the perceived understanding and experiences of families of individuals with TBI and help tailor treatment and management plans in a family-orientated manner.
Conflicts of interest
The authors have no competing interests to declare.
IRB statement
The Ethics were reviewed by QUT Human Ethics Commitee & Medical Research Ethics Committee (MREC), College of Medicine and Health Sciences, Sultan Qaboos University, Muscat, Oman.
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