Caregiver's Psychosocial Concerns and Psychological Distress in Emergency and Trauma Care Setting

INTRODUCTION

Road traffic accidents (RTA) are the public health issue.[1] Traumatic brain injury (TBI) creates emergency situation at any point of time and patients may approach to the hospital for emergency management. When they reach the hospital caregivers may able to remember the previous period of admission, time, day, and month, and if it is direct visit, they have to prepare themselves to give the right information for the immediate medical attention.[2] The emergency setting has multiple challenges, and caregivers face unfamiliar environment. In India, caregiving is left to the family members.[3] In the process, caregivers experience physical, emotional, psychological problems, caregiver burden, dissatisfaction, and psychosocial needs are unmet during hospitalization after TBI.[45] Crisis, stress and coping, and communication theories are commonly used in addressing the psychosocial problems of caregivers of TBI survivors.[67] To meet the caregivers’ psychosocial problems, the role of medical and psychiatric social workers (MPSWs) in emergency and trauma care center is emphasized in the clinical practice.[8] Quantitative and qualitative publications on TBI research are low, and little attention was given to explore the in-depth caregivers experiences mental health, psychosocial issues in emergency, trauma care (ETC)setting.[9] Therefore, the current study aimed to understand the psychological distress, psychosocial concerns of caregivers of persons with TBI in ETC setting.

METHODOLOGY

The study adopted mixed methodology research design. Mixed method is the intentional integration or combination of the two methods, that is quantitative and qualitative, to draw on the strengths of each to answer real-life research questions.[1011]

Adult male and female caregivers providing care for persons with TBI in ETC setting, The National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru, had considered as the universe of the study. Fifty (n = 50) samples were recruited using convenience sampling technique, and inclusion and exclusion criteria were followed. All adult caregivers, who were providing care for persons with TBI and who could speak English and Kannada, were recruited in the study. Caregivers who were not willing to give written informed consent and reported to have major medical and psychiatric disorders were excluded from the study.

Data had been collected during hospitalization. The participants were informed orally about the aim and purpose of the study. Information sheet also handed over to each participant. Predesigned data tools were administered in a face-to-face interview in a separate room over 6 months from August to November 2016. Data were collected in two phases.

In the first phase, sociodemographic details such as caregiver's age, marital status, domicile, education, and occupation were collected. In addition, to identify the presence of psychological distress (depression, anxiety, and stress) among caregivers, depression anxiety and stress scale (DASS-21, Lovibond and Lovibond, 1995) were administered to recruited participants. DASS is a set of three-domain self-report scale designed to measure the significant negative emotional states of depression, anxiety, and stress. Each domain (depression, anxiety, and stress) contains seven items divided into subscales of 2–5 items with similar content. The severity is measured on 0–3; 0 – did not apply to me at all, 1 – a good part of the time, 2 – applied to me to some degree or sometimes, and 3 – applied to me very much or most of the time. The scale was widely used in the Indian context. Each interview lasted between 30 and 45 min.

In the second phase, seven focused group discussions (FGDs) were organized in a systematic manner based on predesigned FGD interview guidelines. FGD is a good way to gather people from similar backgrounds or experiences to discuss on specific objective. FGD can be used to explore the meanings of a particular participant which cannot be explained statistically.[12] In the present study, FGDs were conducted to explore the psychosocial concerns of caregivers in trauma care setting. In the process, caregivers were invited to participate in FGDs after obtaining oral and informed consent. Seven FGDs were conducted on weekly basis. In each FGD, 7–10 caregivers were participated during hospitalization. FGDs were guided by predesigned open-ended questions based on the objective of the study. For example, how did you feel when you heard your relative's accident? What were the difficulties that you faced to get trauma care treatment after the accident? What made you feel more worried during hospitalization? What were your concerns with respect to the patient/family members and yourself? Closed and leading questions were used appropriately to bring the context to understand the person in the situation. FGDs were conducted by trained professional psychiatric social workers (PSWs) from NIMHANS, who had mental health work experience in trauma care setting. FGD participants’ verbatim responses and interaction pattern within the groups were manually recorded in the summary form immediately after FGDs by PSWs.

RESULTS

Data results showed male (72%) and female caregivers (28%) participated in the study, respectively. Of which, son or daughter (44%), brother or sister (28%), spouse (16%), father or mother (8%), and in-laws were (4%) took the caregiving responsibility during hospital stay at trauma care center. Majority of the caregivers studied up to secondary education (62%), belong to Hindu religion (70%), hailing from the rural background (60%). Table 1 explains the sociodemographic details of caregivers.

Table 1 Sociodemographic details of the participants

Table 2 shows age and depression, anxiety, and stress levels of caregivers. Descriptive results (mean and standard deviation) revealed caregivers’ mean age was 45 (mean = 45.00 ± 13.83) years. Among them, male caregivers’ average age was 46 (46.75 ± 14.44) years whereas female caregivers average age was 40 (40.50 ± 11.35) years. Results also indicated that caregivers experienced mild depression (13.36 ± 3.07), moderate anxiety (13.70 ± 3.03), and minimal stress (13.66 ± 2.98). Table 3 shows the association between caregiver gender and caregivers’ depression, anxiety, and stress. Chi-square test revealed that there was no significant association between gender and depression (χ² = 2.381 P < 0.12), anxiety (χ² = 0.01 P < 0.92), and stress (χ² = 0.235 P < 0.61) between caregivers.

Table 2 Age degree of psychological distress of participants

Table 3 Association between gender and depression, anxiety and stress

Personal needs and supportive care

Caregivers expressed the need for the alternative care-to-care themselves. The existing rest homes provided by hospital authority within hospital premises were always full, lodges were expensive and unaffordable outside. Further, they added that periodical counseling services, timely information about the patient condition by mental health professionals such as PSWs would be of help during the hospital stay at emergency and trauma care center.

The participant expressed “I do not have adequate sleep since last one week. I am the only person looking after my wife. I do not have any support from my relatives” (Group 5-participant 7).

Another participant reported that “My counsellor (Psychiatric Social worker) explained about my father's condition since then I know what is happening to my father in every day. I do not know what is happening to my father till I met him (PSW). Counsellor services helped to reduce my worries a lot in my case” (Group 7-Participants 6, 5, 7). Table 4 depicts the major themes and subthemes derived from qualitative data.

Table 4 Major themes and subthemes derived from qualitative data from caregivers

DISCUSSION

RTAs are increasing day-by-day due to motorization and industrialization. Caregivers play the major role to meet the day-to-day needs of TBI survivors during hospitalization. Literature review evidence shows caregivers experience a range of psychosocial issues which remain unexplored in India. There is a lack of research in the areas of psychological distress, psychosocial concerns, and caregivers’ experience in ETC setting.[13] In this context, the current study holds the significance. Most of the scientific studies emphasize TBI incidence is high in male population when compared to female. The current findings showed that the majority of the caregivers were male. Existing rules, in our ETC center, permit the same gender as a caregiver for the TBI survivors. For example, for male TBI survivor, male family member as a caregiver; for female TBI survivor, female family member as a caregiver. This would be the reason for having higher number of male caregivers in the study. Caregiving was left to family members in the Indian context.[3] In the current study predominately, son or daughter took the caregiving responsibility. Besides that brothers’, sisters’, spouse, father/mother, and bother/sisters-in-law were also actively participated in performing the caregiving responsibilities in less proportion. Caregiver's average age was 45 years which means they were in more productive and responsible position in the family. Caregivers engaged in different occupations; self-employment such as driving, tailoring, running petty shops; and private employment such as clerk, gardener, office boy, engineer and few go for coolie work for a daily wage. This shows that the loss of work, loss of pay, and sudden treatment expenses had increased economic burden in the family. The other finding was that majority of the caregivers were from rural background. The demographic details are similar in line with the previous studies reported elsewhere.[1415]

Qualitative results showed that accessing timely ETC was difficult to TBI survivors after the accident, especially in rural areas. This finding highlights the need to improve the golden hour care services and the establishment of ETC centers in the rural area. Poor budget allocation, varied topography, and inadequate infrastructure with respect to the management of emergency situation still persist in rural India.[16]

In addition, inadequate information on TBI, uncertainty about the prognosis, and recovery were a serious concern that consistently expressed by caregivers. Studies reveal caregivers and family members experience uncertainty and stress without understanding what is happening around them.[17] Health education services are not rendered up to the mark in many emergency and trauma care centers.[18] This finding highlights the need for caregiver/family education for TBI survivors and their family members.

The study findings showed that managing treatment expenses for TBI survivor in the emergency period was difficult to the caregivers in spite of concession received for surgical interventions under BPL category and minimal financial support received from family members. Only two individuals utilized the health insurance to meet the treatment expenses. Studies depict that maintaining health expenditure in the absence of health insurance increase the economic burden of caregivers to the families and community.[1920] This warrants research on awareness on health insurance in rural communities, economic burden, and utilization of health insurance schemes in general and in particular among families with TBI survivors.

The present study findings revealed crying, stress, anxiety, depression, helplessness, hopelessness, lack of social support, unmet psychosocial needs, need for respite care, and professional support for caregivers in the emergency and trauma care. Sudden accident, emergency center environment, severity of trauma, being away from young children, spouse, disruption in family routine activities, and lack of support from family members might have contributed to experience emotional distress. Quantitative results showed that there was mild depression, moderate anxiety, and minimal stress was experienced by caregivers. In ETC setting, caregivers generally experience high levels of emotional and psychological distress.[221]

Caregivers also expressed that need for counseling and psychosocial interventions were helpful to reduce their emotional and psychological stress, facilitate to access timely care, and up-to-date information on prognosis and recovery. This finding emphasizes the importance of the MPSWs’ therapeutic interventions in the emergency and trauma care unit.[81822] Review also reported that psychosocial interventions are recommended for TBI survivor and caregivers in ETC setting.[18]

CONCLUSION

Caregivers experience psychological distress, want for informational and educational support. There is a paucity of trained professionals to deal with mental health issues and less time to address high expectations of patients and their family members on prognosis and recovery in ETC setting. Hence, we suggest that psychosocial care regarding crisis intervention, distress management, systematic information, education, family communication, and supportive therapy are imperative in ETC setting. The above psychosocial interventions can be provided with the help of posters, pictorial diagrams, and audio-video material specially designed on the impact of TBI in vernacular language for family education purpose. This would allow literate and illiterate caregivers to understand the basics of anatomy of the brain, functions of the brain, difference between head injury and TBI, how TBI impacts individuals and families, need for emergency treatment, possible side effects, recovery process, long-term impact and importance of caregiver role, and family support for the TBI survivor. However, this information, communication, and education materials should be carefully designed and developed with the help of experts who have handhold work experience in ETC setting such as MPSWs, neurosurgeons, anesthesiologist, mental health educators, psychologist, and psychiatrist. To conclude, the placement of MPSW on 24 × 7 basis in ETC setting is the need of the hour in developing countries like India to address the mental health issues.