Psychosocial needs of persons living with traumatic brain injury and their non-injured spouses: An exploratory study from a tertiary care center

INTRODUCTION

Traumatic brain injury (TBI) is a major cause of mortality and disability; making it a universal health concern.^[1] It can be categorized as mild, moderate, or severe based on symptoms such as loss of consciousness, post-traumatic amnesia, and memory and motor impairments.^[2,3] All age groups are affected by TBI in terms of fatalities, injuries, and impairments, but young, productive people are more likely to suffer than women. The financial burden on families is substantial due to hospitalization and rehabilitation costs.^[1,2]

It has a catastrophic impact on the non-injured spouse, leading to shifts in roles and responsibilities, relationship strains, financial difficulties, and cognitive and behavioral challenges in the injured spouse. The quality and stability of the relationship as well as the partner’s psychological health may suffer if they are unable to handle those difficulties.^[4,5] Spouses typically report poorer levels of positive well-being, quality of life, and life satisfaction, as well as higher levels of anxiety, stress, and depression, when compared to the general population. Recognizing and addressing the psychosocial needs of both, persons living with traumatic brain injury (PLwTBI) and their spouses, are crucial for developing effective interventions.

Relationship dynamics may change due to altered communication, personality shifts, and cognitive impairments. In contrast to the general population, there is no conclusive evidence that TBI raises the rate of marital dissolution.^[6] To improve the well-being of patients and caregivers, there should be proper educational programs and psychosocial interventions to identify and address their psycho-social needs.^[7] Research findings on the psychosocial needs of non-injured spouses and PLwTBI from Western countries may not be directly applicable to the Indian context. Given India’s distinct socio-cultural context, research on this topic is limited, necessitating this exploratory study.

MATERIALS AND METHODS

RESULTS

Table 1 describes the socio-demographic profile of both dyads. The mean age of the patients is 37.79 ± 4.57 years. The majority were males 75% (18 individuals), 37.5% (9 individuals) had completed secondary education, and 25% (6 individuals) were drivers and farmers. The mean age of spouses is 36.42 ± 5.93, (29.2%), 29.2% of them had education up to secondary level education, and 12 of them (33.3%) were engaged in other occupations.

Table 2 revealed the other sociodemographic profiles of the dyads. The mean duration of a couple’s marriage is 13.67 ± 4.86. 54.2% of the couples belonged to rural domicile, 62.5% of the couples were hailing from low socio-economic status (LSES), and the majority of the couples were living in nuclear families (79.2%).

The clinical information of the injured spouses is discussed in Table 3. The diagnosis of the injured spouses shows that, out of 24, 41. 7% (10) of them had been diagnosed with subdural hematoma, the majority of the injured spouses fall into the category of 6 months–1 year, accidents accounted for 79.2% of the cases (19 out of 24), accounting for the reason for injury.

DISCUSSION

TBI is increasing worldwide day by day and causing either permanent or temporary disability among injured persons. The impact of injury is not limited to a person alone, and it leads to psycho-social issues among the family members due to a higher rate of dependency by the patient. Therefore, it is essential to explore the psychosocial needs of couples where one spouse has sustained a TBI. Thematic analysis of data has drawn 21 subthemes and 6 major themes [Table 4]. A detailed description of all the themes and subthemes, along with verbatim accounts from the participants, is provided in a Supplementary File. The majority of the participants expressed that they were not having adequate information about brain injury, its causes, effects, recovery and prognosis, follow-up, and long-term effects. Similarly, this specific need was observed in the Ottonello et al. study (2024),^[9] in which caregivers of persons with neurological illnesses expressed an educational need. Furthermore, another study by Manskow et al., 2018^[10] found that roughly half of the family members were dissatisfied with the style in which they were given information such as who to contact during an emergency if it occurs after discharge and information about the long-term effects of TBI. It determines the existence of an educational need among couples in which one spouse has experienced a TBI, and it is important to educate the dyads on TBI and its implications before discharge.

Another concern that couples have expressed is sexual issues; few patients reported increased sexual desire, few reported decreased desire and non-injured spouses reported consummation issues. The current study is supported by Sander et al., 2012,^[11] 20% of spouses of people with TBI reported sexual dysfunction, and 44% reported dissatisfaction with sexual functioning. 62% of spouses reported a decrease in sexual activity during the year following the injury, 34% reported a decrease in sexual desire, and 34% said that sexuality was less important than it was before the injury.

Impatience and aggressiveness are common behavioral difficulties that bother patients with TBI. These are the most difficult consequences of TBI which affects their social support networks. Anger was observed in 5–8% of military males examined within the first 6 months following TBI.^[12] In the present study, 22 of the couples reported an increase in patients’ anger. According to the study, anger is one of the most common emotional repercussions and found that injuries lasted between 6 months and 3 years, however, practically, all categories reported anger issues. However, there are no fresh studies to substantiate the findings of why non-injured spouses get angry; therefore it was observed in the interview that non-injured spouses would express their anger as a result of burden and stress or secondary to patients’ injury. On the other hand, patients would have anger issues because of the injury itself.

Another theme that they have described is persistent suicidal ideations, such as wanting to terminate their lives and parting away from home. Hostetter et al., 2019; Madsen et al., 2018^[13,14] discovered that patients with severe TBI are 2–4 times more likely to commit suicide than those without TBI. Bethune et al., 2017^[15] discovered that 6.3% of persons with TBI had suicidal thoughts at 3 months and 8.2% at 6 months. The current study also supports Bethune’s findings, as 17 of them had been having 6 months to a year of illness duration. The study observation noted that the possible reasons for having suicidal ideations are poor coping, low resilience, burden, and lack of time for themselves and their spouse’s health.

Most couples reported changes in their roles and responsibilities at home, which have emerged as one of the most common themes among couples. Spouses of people with TBI claimed that they have taken on all of the responsibilities and roles that their injured spouses previously performed, such as getting groceries, paying house rent, financial management, children care, and additionally patient care. This specific need is substantiated by Doser and Norup et al.’s 2016^[16] study, which revealed that all of the responsibilities, roles, and household tasks that they had previous to the TBI, suddenly fell on the spouse, and they now have to take on many more roles as part of the home. The current study’s findings are validated by the aforementioned studies. The injured person may require assistance with a variety of daily tasks, including self-care and mobility. In addition to his or her other responsibilities as a non-injured spouse, he or she is expected to care for the patient, which adds to the already existing tasks. The study also found that non-injured spouses were the major caretakers for the patients, regardless of gender.

Another theme that has emerged is impaired well-being, which includes sleep problems, daytime tiredness, and sleeping during the day. Both spouses experienced a decrease in sleep following one’s brain injury. Ponsford et al., (2013)^[17] stated that individuals with TBI report significantly lower sleep quality, increased daytime drowsiness, reduced sleep efficiency, prolonged sleep duration, and more frequent daytime napping. However, the underlying causes of sleep disturbances in non-injured spouses remain inadequately explored, though emotional factors are likely contributors. Ikiugu et al., (2021)^[18] and Stefanacci and Riddle (2019)^[19] suggest that the psychological, social, and emotional burdens associated with caregiving for an injured individual may negatively impact overall well-being. Family caregivers may experience disrupted sleep patterns, heightened irritability, fatigue, recurrent headaches, mood instability, increased substance use, and a pervasive sense of overwhelm.^[20] Furthermore, caregivers frequently feel unprepared to care for their loved ones, raising the risk of depression and/or sleep disorders.^[21,22] However, it has been perceived that decreasing sleep is causing additional problems for both couples, with non-injured spouses becoming more concerned about their injured partners.

As observed by the researcher during the interviews, most couples were more concerned about the injured spouse’s physical health issues. They had been consulting neurosurgeons, physiotherapists, and neurologists for medical conditions but had not sought any psychosocial support for their problems, despite these issues causing difficulties for them. This indicates a lack of understanding of the overall challenges faced by the patients and their impact on family life. A need-based intervention is required in this area to address these problems before they lead to significant changes in the entire family system.

CONCLUSION

Most of the PLwTBI were male, diagnosed with subdural hematoma, with accidents being the primary cause of brain injury. They primarily belonged to LSES and came from nuclear families. A total of six themes were reported by PLwTBI and their non-injured spouses as their psychosocial needs: Educational needs, sexual issues, behavioral issues, suicidal ideations, diminished well-being, and disturbances in life. These needs are common among PLwTBI and non-injured spouses, which are atypical, and inimitable in nature. Addressing these needs through psychosocial interventions is crucial for improving outcomes for both PLwTBI and their spouses.