Unseen battles: exploring the psychosocial challenges, coping mechanisms and resilience among caregivers of individuals with traumatic brain injury

Priyanka Malhotra; Rati Khurana

doi:10.18203/2394-6040.ijcmph20263592

Authors

Priyanka Malhotra Department of Psychology, IILM University, Gurugram, Haryana, India
Rati Khurana Department of Psychology, IILM University, Gurugram, Haryana, India

DOI:

https://doi.org/10.18203/2394-6040.ijcmph20263592

Keywords:

Traumatic brain injury, Caregiver burden, Coping strategies, Resilience, Psychosocial impact

Abstract

Background: Traumatic brain injury (TBI) affects not only patients, but also primary caregivers and family members, impairing their psychological well-being, social roles, and health. Caregivers frequently experience interpersonal conflict, role obstacles, and stress-related health issues.

Method: The study utilized a qualitative research approach, incorporating in-depth, semi-structured interviews to capture caregiver’s lived experiences. The study included eight caregivers of individuals with moderate to severe traumatic brain injury, selected using criterion-based purposive sampling. Caregivers were aged 18 years or above and had been providing care for a minimum of three months.

Results: The findings of the study revealed that caregivers of individuals with traumatic brain injury faced substantial emotional, social, and financial difficulties. Caregivers reported fear, anxiety, emotional exhaustion, identity disruption, and career strain during critical caregiving phase. Despite these difficulties, they demonstrated resilience through spirituality, family support, emotional commitment and motivation from recovery milestones.

Conclusion: Caregiving in traumatic brain injury involves substantial psychosocial burden alongside adaptive resilience. The findings emphasize the need for structured psychosocial, emotional, and financial support systems to reduce caregiver stress and enhance long-term well-being and sustainability.

References

Taylor CA, Bell JM, Breiding MJ, Xu L. Traumatic brain injury–related emergency department visits, hospitalizations, and deaths-United States, 2007 and 2013. MMWR Surveill Summ. 2017;66(9):1–16.

World Health Organization. Neurological disorders: public health challenges. Geneva: World Health Organization. 2006.

Zaloshnja E, Miller T, Langlois JA, Selassie AW. Prevalence of long-term disability from traumatic brain injury in the civilian population of the United States, 2005. J Head Trauma Rehabil. 2008;23(6):394–400.

Thurman DJ, Alverson C, Dunn KA, Guerrero J, Sniezek JE. Traumatic brain injury in the United States: a public health perspective. J Head Trauma Rehabil. 1999;14(6):602–15.

Raju B, Lukose S, Raj P, Reddy K. Clinically providing psycho-social care for caregivers in emergency and trauma care setting: scope for medical and psychiatric social workers. Int J Crit Illn Inj Sci. 2016;6(4):206–10.

Andelic N, Sigurdardottir S, Schanke AK, Sandvik L, Sveen U, Roe C. Disability, physical health and mental health 1 year after traumatic brain injury. Disabil Rehabil. 2010;32:1122–31.

Geurtsen GJ, van Heugten CM, Martina JD, Geurts AC. Comprehensive rehabilitation programmes in the chronic phase after severe brain injury: a systematic review. J Rehabil Med. 2010;42:97–110.

Tam S, McKay A, Sloan S, Ponsford J. The experience of challenging behaviours following severe TBI: a family perspective. Brain Inj. 2015;29(8):813–21.

Finnanger TG, Olsen A, Skandsen T, Lydersen S, Vik A, Evensen KA, et al. Life after adolescent and adult moderate and severe traumatic brain injury: self-reported executive, emotional, and behavioural function 2–5 years after injury. Behav Neurol. 2015;2:3292.

Van Puymbroeck M, Miller KK, Dickes LA, Schmid AA. Perceptions of yoga therapy embedded in two inpatient rehabilitation hospitals: agency perspectives. Evid Based Complement Alternat Med. 2015;2:125969.

Garrett R, Immink MA, Hillier S. Becoming connected: the lived experience of yoga participation after stroke. Disabil Rehabil. 2011;33:2404–15.

Bugri MK, Ti-enkawol Nachinab G. Experiences of family caregivers of patients with traumatic brain injury: a study in the Tamale metropolis. BMC Res Notes. 2025;18(1):1–9.

American Medical Association. Caring for the caregiver: a guide for physicians. Chicago: AMA. 2018.

Bayen E, Pradat-Diehl P, Jourdan C, Ghout I, Darnoux E, Azerad S, et al. Predictors of informal care burden 1 year after a severe traumatic brain injury: results from the PariS-TBI study. J Head Trauma Rehabil. 2013;28(6):408–18.

Soeterik SM, Connolly S, Playford ED, et al. The psychological impact of prolonged disorders of consciousness on caregivers: a systematic review of quantitative studies. Clin Rehabil. 2017;31(10):1374–85.

Hawley CA, Ward AB, Magnay AR, Long J. Parental stress and burden following traumatic brain injury amongst children and adolescents. Brain Inj. 2003;17(1):1–23.

Ennis N, Rosenbloom BN, Canzian S, Topolovec-Vranic J. Depression and anxiety in parent versus spouse caregivers of adult patients with traumatic brain injury: a systematic review. Neuropsychol Rehabil. 2013;23(1):1–18.

LaVela SL, Landers K, Etingen B, Karalius VP, Miskevics S. Factors related to caregiving for individuals with spinal cord injury compared to caregiving for individuals with other neurologic conditions. J Spinal Cord Med. 2015;38(4):505–14.

Davis LC, Sander AM, Struchen MA, Sherer M, Nakase-Richardson R, Malec JF. Medical and psychosocial predictors of caregiver distress and perceived burden following traumatic brain injury. J Head Trauma Rehabil. 2009;24(3):145–54.

Phelps AC, Maciejewski PK, Nilsson M, Balboni TA, Wright AA, Paulk ME, et al. Religious coping and use of intensive life-prolonging care near death in patients with advanced cancer. JAMA. 2009;301(11):1140–7.

Marwitz JH, Perera RA, Klyce DW, Abbasi K, Bergquist TF, Neumann D, et al. Caregiver resilience following traumatic brain injury: findings at six months postinjury. Rehabil Psychol. 2023;68(3):281–8.

Iaccarino C, Gerosa A, Viaroli E. Epidemiology of traumatic brain injury. In: Traumatic Brain Injury. Cham: Springer. 2021:3–11.

Lefebvre H, Cloutier G, Levert MJ. Perspectives of survivors of traumatic brain injury and their caregivers on long-term social integration. Brain Inj. 2008;22(8):535–43.

Livingston LA, Kennedy RE, Marwitz JH, Arango-Lasprilla JC, Rapport LJ, Bushnik T, et al. Predictors of family caregivers’ life satisfaction after traumatic brain injury at one- and two-years post-injury. Neurorehabilitation. 2010;27:73–81.

Ergh TC, Rapport LJ, Coleman RD, Hanks RA. Predictors of caregiver and family functioning following a traumatic brain injury: social support moderates caregiver distress. J Head Trauma Rehabil. 2002;17(2):155–74.

Marsh NV, Kersel DA, Havill JH, Sleigh JW. Caregiver burden during the year following severe traumatic brain injury. J Clin Exp Neuropsychol. 2002;24(4):434–47.

Jumisko E, Lexell J, Söderberg S. Living with moderate or severe traumatic brain injury: the meaning of family members’ experiences. J Fam Nurs. 2007;13(3):353-69.

Gan C, Gargaro J, Brandys C, Gerber G, Boschen K. Family caregivers’ support needs after brain injury: a synthesis of perspectives from caregivers, programs, and researchers. Neurorehabilitation. 2010;27:5–18.

Hanks RA, Rapport LJ, Vangel S. Caregiving appraisal after traumatic brain injury: the effects of functional status, coping style, social support and family functioning. Neurorehabilitation. 2007;22:43–52.

Rotondi AJ, Sinkule J, Balzer K, Harris J, Moldovan R. A qualitative needs assessment of persons who have experienced traumatic brain injury and their primary family caregivers. J Head Trauma Rehabil. 2007;22(1):14–25.

Bayley-Veloso R, Salmon PG. Yoga in clinical practice. Mindfulness. 2015;6:1–12.

Smith JA, Creer T, Sheets T, Watson S. Is there more to yoga than exercise. Altern Ther Health Med. 2011;17(3):22–9.

Payne K, Taylor RM, Stocking C. Physicians’ attitudes about the care of patients in the persistent vegetative state: a national survey. Ann Intern Med. 1996;125(2):104–10.