Traumatic brain injury (TBI) has wide-ranging neuropsychological, physical, social and financial implications. The impact on caregivers of moderate to severe TBI survivors, particularly in low- and middle-income countries, is under-investigated.
AIM:
Identify and describe the experiences of caregivers’ of moderate to severe TBI survivors postdischarge from healthcare facilities.
METHODS:
A scoping review was conducted utilising seven electronic databases. Two reviewers screened articles using eligibly criteria related to setting (postdischarge), caregiving (informal), age of TBI survivors (> 18 years) and injury severity (moderate-severe). Studies published in English between 1999 –2018 were included.
RESULTS:
Fourteen articles met the inclusion criteria. Articles reporting on the same sample were merged during data charting. The final analyses included 11 articles comprised of qualitative, quantitative and mixed-methods studies. Ten themes were identified: psychological distress, social functioning, financial burden, family experiences, coping strategies, access to services, time burdens and physical, cognitive and behavioural difficulties. Characteristics of caregivers and TBI survivors were also reported.
CONCLUSION:
Caregivers of moderate to severe TBI survivors experience challenges in various life domains, and there is limited research concerning caregivers in low- and middle-income countries. Future research should focus on understanding more nuanced experiences across various environments, which may increase comprehensive, flexible and long-term support.
Abrahamson,V., Jensen,J., Springett,K., & Sakel,M. (2017). Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community: a qualitative study. Disability and Rehabilitation, 39(17), 1683–1694. doi: 10.1080/09638288.2016.1211755
2.
Anderson,M. I., Simpson,G. K., & Morey,P. J. (2013). The impact of neurobehavioral impairment on family functioning and the psychological well-being of male versus female caregivers of relatives with severe traumatic brain injury: Multigroup analysis. Journal of Head Trauma Rehabilitation, 28(6), 453–463. doi: 10.1097/HTR.0b013e31825d6087
3.
Anderson,M. I., Simpson,G. K., Morey,P. J., Mok,M. M. C., Gosling,T. J., & Gillett,L. E. (2009). Differential pathways of psychological distress in spouses vs. parents of people with severe traumatic brain injury (TBI): Multi-group analysis. Brain Injury, 23(12), 931–943. doi: 10.3109/02699050903302336
4.
Anderson,V., Northam,E., Hendy,J., Wrennall,J. (2001). Traumatic Brain Injury. In C. Code & D. Müller (Eds.), Developmental Neuropsychology A Clinical Approach (pp. 125-184). East Sussex, United Kingdom: Psychology Press Ltd.
5.
Arango-Lasprilla,J. C., Ketchum,J. M., Cifu,D., Hammond,F., Castillo,C., Nicholls,E. . . .Deng,X. (2010). Predictors of extended rehabilitation length of stay after traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 91(10), 1495–1504. doi: 10.1016/j.apmr.2010.07.010
6.
Arskey,H., & O’Malley,L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology: Theory & Practice, 8(1), 19–32. doi: 10.1080/1364557032000119616
7.
Baker,A., Barker,S., Sampson,A., & Martin,C. (2016). Caregiver outcomes and interventions: A systematic scoping review of the traumatic brain injury and spinal cord injury literature. Clinical Rehabilitation, 31(1), 45–60. doi: 10.1177/0269215516639357
8.
CBR Education and Training for Empowerment. (2015). Understanding Community Based Rehabilitation in South Africa. Scottsville, South Africa. Retrieved from http://www.createcbr.co.za
9.
Chronister,J., Chan,F., Sasson-Gelman,E. J., & Chiu,C. Y. (2010). The association of stress-coping variables to quality of life among caregivers of individuals with traumatic brain injury. NeuroRehabilitation, 27(1), 49–62. doi: 10.3233/NRE-2010-0580
10.
Chua,K. S. G., Ng,Y.-S., Yap,S. G. M., & Bok,C.-W. (2007). A Brief Review of Traumatic Brain Injury Rehabilitation.. Retrieved from. Annals of the Academy of Medicine, Singapore, 36(1), 31–42. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/17285184
11.
Dickson,A., O’Brien,G., Ward,R., Allan,D., & O’Carroll,R. (2010). The impact of assuming the primary caregiver role following traumatic spinal cord injury: An interpretative phenomenological analysis of the spouse’s experience. Psychology and Health, 25(9), 1101–1120. doi: 10.1080/08870440903038949
12.
Dickson,A., O’Brien,G., Ward,R., Flowers,P., Allan,D., & O’Carroll,R. (2011). Adjustment and coping in spousal caregivers following a traumatic spinal cord injury: An interpretative phenomenological analysis. Journal of Health Psychology, 17(2), 247–257. doi: 10.1177/1359105311411115
13.
Douglas,J. M., & Spellacy,F. J. (2000). Correlates of depression in adults with severe traumatic brain injury and their carers. Brain Injury, 14(1), 71–88. doi: 10.1080/026990500120943
14.
Gan,C., Gargaro,J., Brandys,C., Gerber,G., & Boschen,K. (2010). Family caregivers’ support needs after brain injury: A synthesis of perspectives from caregivers, programs, and researchers. NeuroRehabilitation, 27(1), 5–18. doi: 10.3233/NRE-2010-0577
15.
Johnson,W. D., & Griswold,D. P. (2017). Traumatic brain injury: a global challenge. The Lancet Neurology Commission, 16(12), 949–950. doi: 10.1016/s1474-4422(17)30362-9
16.
Kao,H. F. S., & Stuifbergen,A. K. (2004). Love and load - the lived experience of the mother-child relationship among young adult traumatic brain-injured survivors. The Journal of Neuroscience Nursing, 36(2), 73–81. doi: 10.1097/01376517-200404000-00004
17.
Kelley,E., Sullivan,C., Loughlin,J. K., Hutson,L., Dahdah,M. N., Long,M. K., . . .Poole,J. H. (2014). Self-awareness and neurobehavioral outcomes, years or more after moderate to severe brain injury. Journal of Head Trauma Rehabilitation, 29(2), 147–152. doi: 10.1097/HTR.0b013e31826db6b9
18.
Kratz,A. L., Sander,A. M., Brickell,T. A., Lange,R. T., & Carlozzi,N. E. (2015). Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life. Neuropsychological Rehabilitation, 27(1), 16–37. doi: 10.1080/09602011.2015.1051056
19.
Kreitzer,N., Kurowski,B. G., & Bakas,T. (2018). Systematic Review of Caregiver and Dyad Interventions After Adult Traumatic Brain Injury. Archives of Physical Medicine and Rehabilitation, 99(11), 2342–2354. doi: 10.1016/j.apmr.2018.04.016
20.
Leibach,G. G., Trapp,S. K., Perrin,P. B., Everhart,R. S., Cabrera,T. V., Jimenez-Maldonado,M., & Arango-Lasprilla,J. C. (2014). Family needs and TBI caregiver mental health in Guadalajara, Mexico. NeuroRehabilitation, 34(1), 167–175. doi: 10.3233/NRE-131013
21.
Lezak,M. D., Howieson,D. B., Brigler,E. D., & Tranel,D. (2012). Traumatic Brain Injury. In Neuropsychological Assessment (5th ed., pp. 930–1201). New York, NY: Oxford University Press, Inc.
22.
Lynch,J., & Cahalan,R. (2017). The impact of spinal cord injury on the quality of life of primary family caregivers: A literature review. Spinal Cord, 55(11), 964–978. doi: 10.1038/sc.2017.56
23.
Macaden,A. S., Chandler,B. J., Chandler,C., & Berry,A. (2010). Sustaining employment after vocational rehabilitation in acquired brain injury. Disability and Rehabilitation, 32(14), 1140–1147. doi: 10.3109/09638280903311594
24.
Malec,J. F., Brown,A. W., Leibson,C. L., Flaada,J. T., Mandrekar,J. N., Diehl,N. N., & Perkins,P. K. (2007). The Mayo Classification System for Traumatic Brain Injury Severity. Journal of Neurotrauma, 24(9), 1417–1424. doi: 10.1089/neu.2006.0245
25.
Malec,J. F., Van Houtven,C. H., Tanielian,T., Atizado,A., & Dorn,M. C. (2017). Impact of TBI on caregivers of veterans with TBI: Burden and interventions. Brain Injury, 31(9), 1235–1245. doi: 10.1080/02699052.2016.1274778
26.
Marsh,N. V., Kersel,D. A., Havill,J. H., & Sleigh,J. W. (1998). Caregiver burden at months following severe traumatic brain injury. Brain Injury, doi: 10.1080/026990598122700
27.
Mbakile-Mahlanza,L., Manderson,L., Downing,M., & Ponsford,J. (2017). Family caregiving of individuals with traumatic brain injury in Botswana. Disability and Rehabilitation, 39(6), 559–567. doi: 10.3109/09638288.2016.1152605
28.
Mbakile-Mahlanza,L., Manderson,L., & Ponsford,J. (2015). The experience of traumatic brain injury in Botswana. Neuropsychological Rehabilitation. doi:10.1080/09602011.2014.999000
29.
Mlenzana,N. B., Eide,A. H., & Frantz,J. M. (2018). Perceptions and satisfaction of caregivers regarding rehabilitation services from selected rehabilitation centres in the Western Cape. African Journal of Disability, 7, 1–5. doi: 10.4102/ajod.v7i0.415
30.
Moher,D., Liberati,A., Tetzlaff,J., Altman,D., & The PRISMA Group. (2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. e. PLoS Med, 6(7), 1000097. doi: 10.1371/journal.pmed1000097
31.
Mokhosi,M. T., & Grieve,K. W. (2004). African families’ perceptions of traumatic brain injury. South African Journal of Psychology, 34(2), 301–317. doi: 10.1177/008124630403400208
Nalder,E., Fleming,J., Cornwell,P., & Foster,M. (2012). Linked Lives: The Experiences of Family Caregivers During the Transition from Hospital to Home Following Traumatic Brain Injury. Brain Impairment, 13(1), 108–122. doi: 10.1017/brimp.2012.4
34.
Njoki,E., Frantz,J., & Mpofu,R. (2007). Health-promotion needs of youth with a spinal cord injury in South Africa. Disability and Rehabilitation, 29(6), 465–472. doi: 10.1080/09638280600841224
35.
Pérez,L. M., & Martinez,J. (2008). Community Health Workers: Social Justice and Policy Advocates for Community Health and Well-Being. American Journal of Public Health, 98(1), 11–14. doi: 10.2105/AJPH.2006.100842
36.
Perlesz,A., Kinsella,G., & Crowe,S. (1999). Impact of traumatic brain injury on the family: A critical review. Rehabilitation Psychology, 44(1), 6–35. doi: 10.1037/0090-5550.44.1.6
37.
Peters,D. H., Garg,A., Bloom,G., Walker,D. G., Brieger,W. R., & Hafizur Rahman,M. (2008). Poverty and access to health care in developing countries. Annals of the New York Academy of Sciences, 1136, 161–171. doi: 10.1196/annals.1425.011
38.
Peters,M. D. J., Godfrey,C. M., Khalil,H., McInerney,P., Parker,D., & Soares,C. B. (2015). Guidance for conducting systematic scoping reviews. International Journal of Evidence-Based Healthcare, 13(3), 141–146. doi: 10.1097/XEB.0000000000000050
39.
Peters,M., Godfrey,C., McInerney,P., Baldini Soares,C., Khalil,H., & Parker,D. (2017). Chapter 11: Scoping Reviews. Retrieved December 4, 2019, from https://reviewersmanual.joannabriggs.org/
40.
Peters,M., Godfrey,C., McInerney,P., Munn,Z., Tricco,A., & Khalil,H. (2020). Scoping Reviews. In E. Aromataris & Z. Munn (Eds.), Joanna Briggs Institute Reviewer’s Manual (4th ed., pp. 407-452). The Joanna Briggs Institute. Retrieved from https://reviewersmanual.joannabriggs.org/
41.
Piccenna,L., Lannin,N. A., Gruen,R., Pattuwage,L., & Bragge,P. (2016). The experience of discharge for patients with an acquired brain injury from the inpatient to the community setting: A qualitative review. Brain Injury, 30(3), 241–251. doi: 10.3109/02699052.2015.1113569
42.
Quaglio,G., Gallucci,M., Brand,H., Dawood,A., & Cobello,F. (2017). Traumatic brain injury: a priority for public health policy. The Lancet Neurology Commission, 16(12), 951–952. doi: 10.1016/S1474-4422(17)30370-8
43.
Richardson,J. T. E. (2000). Retrograde Amnesia and Post Traumatic Amnesia. In Clinical and Neuropsychological Aspects of Closed Head Injury (2nd ed., pp. 73–95). East Sussex, United Kingdom: Psychology Press Ltd.
44.
Rochat,L., Beni,C., Billieux,J., Annoni,J. M., & Van Der Linden,M. (2011). How impulsivity relates to compulsive buying and the burden perceived by caregivers after moderate-to-severe traumatic brain injury. Psychopathology, 44(3), 158–164. doi: 10.1159/000322454
45.
Rubiano,A. M., Carney,N., Chesnut,R., & Puyana,J. C. (2015). Global neurotrauma research challenges and opportunities. Neurotrauma, 527(7578), S193–S197. doi: 10.1038/nature16035
46.
Sander,A. M., Maestas,K. L., Sherer,M., Malec,J. F., & Nakase-Richardson,R. (2012). Relationship of caregiver and family functioning to participation outcomes after postacute rehabilitation for traumatic brain injury: A multicenter investigation. Archives of Physical Medicine and Rehabilitation, 93(5), 842–848. doi: 10.1016/j.apmr.2011.11.031
47.
Singh,P., & Chokshi,D. (2013). Community Health Workers —A Local Solution to a Global Problem. N Engl J Med, 369(10), 894–896. doi: 10.1056/NEJMp1309322
48.
Singh,P., & Sachs,J. D. (2013). million community health workers in sub-Saharan Africa by. Lancet, 382, 363–365. doi: 10.1016/S0140-6736(12)62002-9
49.
Smeets,S. M., Van Heugten,C. M., Geboers,J. F., Visser-Meily,J. M., & Schepers,V. P. (2012). Respite care after acquired brain injury: The well-being of caregivers and patients. Archives of Physical Medicine and Rehabilitation, 93(5), 834–841. doi: 10.1016/j.apmr.2011.10.029
50.
Stillman,M. D., Frost,K. L., Smalley,C., Bertocci,G., & Williams,S. (2014). Health care utilization and barriers experienced by individuals with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 95(6), 1114–1126. doi: 10.1016/j.apmr.2014.02.005
51.
Tam,S., McKay,A., Sloan,S., & Ponsford,J. (2015). The experience of challenging behaviours following severe TBI: A family perspective. Brain Injury, 29(7-8), 813–821. doi: 10.3109/02699052.2015.1005134
52.
Teasdale,G., & Jennett,B. (1974). Assessment of coma and impaired consciousness. The Lancet Neurology, 304(7872), 81–84. doi: 10.1016/S0140-6736(74)91639-0
Thrush,A., & Hyder,A. (2014). The neglected burden of caregiving in low- and middle-income countries. Disability and Health Journal, 7(3), 262–272. doi: 10.1016/j.dhjo.2014.01.003
55.
Tricco,A. C., Antony,J., Soobiah,C., Kastner,M., Macdonald,H., Cogo,E., . . .Straus,S. E. (2016). Knowledge synthesis methods for integrating qualitative and quantitative data: A scoping review reveals poor operationalization of the methodological steps. Journal of Clinical Epidemiology. 29-35. doi: 10.1016/j.jclinepi.2015.12.011
56.
Tricco,A. C., Lillie,E., Zarin,W., O’Brien,K. K., Colquhoun,H., Levac,D., . . .Straus,S. E. (2018). PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Annals of Internal Medicine, 169(7), 467–473. doi: 10.7326/M18-0850
57.
Turner,B. J., Fleming,J. M., Ownsworth,T. L., & Cornwell,P. L. (2008). The transition from hospital to home for individuals with acquired brain injury: A literature review and research recommendations. Disability and Rehabilitation, 30(16), 1153–1176. doi: 10.1080/09638280701532854
58.
Vangel,S. J., Rapport,L. J., & Hanks,R. A. (2011). Effects of family and caregiver psychosocial functioning on outcomes in persons with traumatic brain injury. Journal of Head Trauma Rehabilitation, 26(1), 20–29. doi: 10.1097/HTR.0b013e318204a70d
59.
Verhaeghe,S., Defloor,T., & Grypdonck,M. (2005). Stress and coping among families of patients with traumatic brain injury: A review of the literature. Journal of Clinical Nursing, 14(8 A), 1004–1012. doi: 10.1111/j.1365-2702.2005.01126.x
60.
Wongvatunyu,S., & Porter,E. J. (2005). Mothers’ experience of helping young adults with traumatic brain injury. Journal of Nursing Scholarship, 37(1), 48–56. doi: 10.1111/j.1547-5069.2005.00015.x
61.
Wongvatunyu,S., & Porter,E. J. (2008a). Changes in family life. Journal of Family Nursing, 14(3), 314–332. doi: 10.1177/1074840708321473
62.
Wongvatunyu,S., & Porter,E. J. (2008b). Helping young adult children with traumatic brain injury: The life-world of mothers. Qualitative Health Research, 18(8), 1062–1074. doi: 10.1177/1049732308320111
Zaidi,A. A., Dixon,J., Lupez,K., De Vries,S., Wallis,L. A., Ginde,A., & Mould-Millman,N. K. (2019). The burden of trauma at a district hospital in the Western Cape Province of South Africa. African Journal of Emergency Medicine, 9(July 2018), S14–S20. doi: 10.1016/j.afjem.2019.01.007
65.
Zillmer,E. A., Spies,M. V., & Culbertson,W. C. (2008). Traumatic Head Injury and Rehabilitation. In Principles of Neuropsychology (pp. 369–398). Belmont, CA: Cengage Learning.
