Review article (meta-analysis)| Volume 99, ISSUE 11, P2342-2354, November 2018

Systematic Review of Caregiver and Dyad Interventions After Adult Traumatic Brain Injury



      To describe and synthesize the literature on adult traumatic brain injury (TBI) family caregiver and dyad intervention. TBI is a common injury that has a significant long-term impact, and is sometimes even characterized as a chronic condition. Informal (ie, unpaid) family caregivers of adults with TBI experience high rates of burnout, depression, fatigue, anxiety, lower subjective well-being, and poorer levels of physical health compared to noncaregivers. This study addresses the critical gap in the understanding of interventions designed to address the impact of TBI on adult patients and their family caregivers.

      Data Sources

      PubMed and MEDLINE.

      Study Selection

      Studies selected for review had to be written in English and be quasi-experimental or experimental in design, report on TBI caregivers, survivors with heavy involvement of caregivers, or caregiver dyads, involve moderate and severe TBI, and describe an intervention implemented during some portion of the TBI care continuum.

      Data Extraction

      The search identified 2171 articles, of which 14 met our criteria for inclusion. Of the identified studies, 10 were randomized clinical trials and 4 were nonrandomized quasi-experimental studies. A secondary search to describe studies that included individuals with other forms of acquired brain injury in addition to TBI resulted in 852 additional titles, of which 5 met our inclusion criteria.

      Data Synthesis

      Interventions that targeted the caregiver primarily were more likely to provide benefit than those that targeted caregiver/survivor dyad or the survivor only. Many of the studies were limited by poor fidelity, low sample sizes, and high risk for bias based on randomization techniques.


      Future studies of TBI caregivers should enroll a more generalizable number of participants and ensure adequate fidelity to properly compare interventions.


      List of abbreviations:

      CONSORT (Consolidated Standards of Reporting Trials), RCT (randomized controlled trial), TBI (traumatic brain injury), TREND (Transparent Reporting of Evaluations with Nonrandomized Designs)
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        • Zaloshnja E.
        • Miller T.
        • Langlois J.A.
        • Selassie A.W.
        Prevalence of long-term disability from traumatic brain injury in the civilian population of the United States, 2005.
        J Head Traum Rehabil. 2008; 23: 394-400
        • Thurman D.J.
        • Alverson C.
        • Dunn K.A.
        • Guerrero J.
        • Sniezek J.E.
        Traumatic brain injury in the United States: A public health perspective.
        J Head Trauma Rehabil. 1999; 14: 602-615
        • Taylor C.A.
        Traumatic brain injury–related emergency department visits, hospitalizations, and deaths—United States, 2007 and 2013.
        MMWR Surveillance Summaries. 2017; 66: 1-16
        • Masel B.E.
        • DeWitt D.S.
        Traumatic brain injury: a disease process, not an event.
        J Neurotrauma. 2010; 27: 1529-1540
        • Colantonio A.
        • Hsueh J.
        • Petgrave J.
        • Hirdes J.P.
        • Berg K.
        A profile of patients with traumatic brain injury within home care, long-term care, complex continuing care, and institutional mental health settings in a publicly insured population.
        J Head Trauma Rehabil. 2015; 30: E18-E29
        • Bazarian J.J.
        • Cernak I.
        • Noble-Haeusslein L.
        • Potolicchio S.
        • Temkin N.
        Long-term neurologic outcomes after traumatic brain injury.
        J Head Trauma Rehabil. 2009; 24: 439-451
        • Jourdan C.
        • Bayen E.
        • Pradat-Diehl P.
        • et al.
        A comprehensive picture of 4-year outcome of severe brain injuries. Results from the PariS-TBI study.
        Ann Phys Rehabil Med. 2016; 59: 100-106
        • Gillen R.
        • Tennen H.
        • Affleck G.
        • Steinpreis R.
        Distress, depressive symptoms, and depressive disorder among caregivers of patients with brain injury.
        J Head Trauma Rehabil. 1998; 13: 31-43
        • Marsh N.V.
        • Kersel D.A.
        • Havill J.A.
        • Sleigh J.W.
        Caregiver burden during the year following severe traumatic brain injury.
        J Clin Exp Neuropsych. 2002; 24: 434-447
        • Saban K.L.
        • Griffin J.M.
        • Urban A.
        • Janusek M.A.
        • Pape T.L.
        • Collins E.
        Perceived health, caregiver burden, and quality of life in women partners providing care to veterans with traumatic brain injury.
        J Rehabil Res Dev. 2016; 53: 681-692
        • Mellick D.
        • Gerhart K.A.
        • Whiteneck G.G.
        Understanding outcomes based on the post-acute hospitalization pathways followed by persons with traumatic brain injury.
        Brain Injury. 2003; 17: 55-71
        • Schmotz C.
        • Richinger C.
        • Lorenzl S.
        High burden and depression among late-stage idiopathic Parkinson disease and progressive supranuclear palsy caregivers.
        J Geriatr Psychiatry Neurol. 2017; 30: 267-272
        • Takai M.
        • Takahashi M.
        • Iwamitsu Y.
        • et al.
        The experience of burnout among home caregivers of patients with dementia: relations to depression and quality of life.
        Arch Gerontol Geriatr. 2009; 49: e1-e5
        • Johansen S.
        • Cvancarova M.
        • Ruland C.
        The effect of cancer patients’ and their family caregivers’ physical and emotional symptoms on caregiver burden.
        Cancer Nurs. 2017; 4: 91-99
        • Leibach G.G.
        • Trapp S.K.
        • Perrin P.B.
        • et al.
        Family needs and TBI caregiver mental health in Guadalajara, Mexico.
        NeuroRehabilitation. 2014; 34: 167-175
        • Pinquart M.
        • Sorensen S.
        Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis.
        Psychol Aging. 2003; 18: 250-267
        • Bayen E.
        • Pradat-Diehl P.
        • Jourdan C.
        • 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: 408-418
        • Manskow U.S.
        • Friborg O.
        • Roe C.
        • Braine M.
        • Damsgard E.
        • Anke A.
        Patterns of change and stability in caregiver burden and life satisfaction from 1 to 2 years after severe traumatic brain injury: a Norwegian longitudinal study.
        NeuroRehabilitation. 2017; 40: 211-222
        • Teasdale G.
        • Jennett B.
        Assessment of coma and impaired consciousness. A practical scale.
        Lancet. 1974; 2: 81-84
        • Bakas T.
        • Clark P.C.
        • Kelly-Hayes M.
        • King R.B.
        • Lutz B.J.
        • Miller E.L.
        Evidence for stroke family caregiver and dyad interventions: a statement for healthcare professionals from the American Heart Association and American Stroke Association.
        Stroke. 2014; 45: 2836-2852
        • Bakas T.
        • McCarthy M.
        • Miller E.T.
        Update on the state of the evidence for stroke family caregiver and dyad interventions.
        Stroke. 2017; 48: e122-e125
        • Moher D.
        • Liberati A.
        • Tetzlaff J.
        • Altman D.G.
        Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement.
        PLoS. 2009; 6e1000097
        • Boutron I.
        • Moher D.
        • Altman D.G.
        • Schulz K.F.
        • Ravaud P.
        Extending the CONSORT statement to randomized trials of nonpharmacologic treatment: explanation and elaboration.
        Ann Intern Med. 2008; 148: 295-309
        • Des Jarlais D.C.
        • Lyles C.
        • Crepaz N.
        Improving the reporting quality of nonrandomized evaluations of behavioral and public health interventions: the TREND statement.
        Am J Public Health. 2004; 94: 361-366
        • Shadish W.R.
        • Cook T.D.
        • Campbell D.T.
        Experimental and quasi-experimental designs for generalized causal inference.
        Wadsworth Cengage Learning, Boston2002
        • Hoffmann T.C.
        • Glasziou P.P.
        • Boutron I.
        • et al.
        [Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide].
        Gesundheitswesen. 2016; 78 ([German]): 175-188
        • Rivera P.A.
        • Elliott T.R.
        • Berry J.W.
        • Grant J.S.
        Problem-solving training for family caregivers of persons with traumatic brain injuries: a randomized controlled trial.
        Arch Phys Med Rehabil. 2008; 89: 931-941
        • Thornton M.
        • Marshall S.
        • McComas J.
        • Finestone H.
        • McCormick A.
        • Sveistrup H.
        Benefits of activity and virtual reality based balance exercise programmes for adults with traumatic brain injury: perceptions of participants and their caregivers.
        Brain Injury. 2005; 19: 989-1000
        • McLaughlin K.A.
        • Glang A.
        • Beaver S.V.
        • Gau J.M.
        • Keen S.
        Web-based training in family advocacy.
        J Head Trauma Rehabil. 2013; 28: 341-348
        • Sinnakaruppan I.
        • Downey B.
        • Morrison S.
        Head injury and family carers: a pilot study to investigate an innovative community-based educational programme for family carers and patients.
        Brain Injury. 2005; 19: 283-308
        • Powell J.M.
        • Fraser R.
        • Brockway J.A.
        • Temkin N.
        • Bell K.R.
        A telehealth approach to caregiver self-management following traumatic brain injury: a randomized controlled trial.
        J Head Trauma Rehabil. 2016; 31: 180-190
        • Bell K.R.
        • Brockway J.A.
        • Hart T.
        • et al.
        Scheduled telephone intervention for traumatic brain injury: a multicenter randomized controlled trial.
        Arch Phys Med Rehabil. 2011; 92: 1552-1560
        • Togher L.
        • McDonald S.
        • Tate R.
        • Power E.
        • Rietdijk R.
        Training communication partners of people with severe traumatic brain injury improves everyday conversations: a multicenter single blind clinical trial.
        J Rehabil Med. 2013; 45: 637-645
        • Semlyen J.K.
        • Summers S.J.
        • Barnes M.P.
        Traumatic brain injury: efficacy of multidisciplinary rehabilitation.
        Arch Phys Med Rehabil. 1998; 79: 678-683
        • Moriarty H.
        • Winter L.
        • Robinson K.
        • et al.
        A randomized controlled trial to evaluate the veterans’ in-home program for military veterans with traumatic brain injury and their families: report on impact for family members.
        PM R. 2016; 8: 495-509
        • Hanks R.A.
        • Rapport L.J.
        • Wertheimer J.
        • Koviak C.
        Randomized controlled trial of peer mentoring for individuals with traumatic brain injury and their significant others.
        Arch Phys Med Rehabil. 2012; 93: 1297-1304
        • Brown A.W.
        • Moessner A.M.
        • Bergquist T.F.
        • Kendall K.S.
        • Diehl N.N.
        • Mandrekar J.
        A randomized practical behavioural trial of curriculum-based advocacy training for individuals with traumatic brain injury and their families.
        Brain Injury. 2015; 29: 1530-1538
        • Bowen A.
        • Tennant A.
        • Neumann V.
        • Chamberlain M.A.
        Neuropsychological rehabilitation for traumatic brain injury: do carers benefit?.
        Brain Injury. 2001; 15: 29-38
        • Bell K.R.
        • Temkin N.R.
        • Esselman P.C.
        • et al.
        The effect of a scheduled telephone intervention on outcome after moderate to severe traumatic brain injury: a randomized trial.
        Arch Phys Med Rehabil. 2005; 86: 851-856
        • Morris K.C.
        Psychological distress in carers of head injured individuals: the provision of written information.
        Brain Injury. 2001; 15: 239-254
        • U.S. Department of Health and Human Service: Centers for Disease Control and Prevention
        Report to Congress: traumatic brain injury in the United States.
        U.S. Government Printing Office, Washington (DC)1999
        • Stone R.
        • Cafferata G.L.
        • Sangl J.
        Caregivers of the frail elderly: a national profile.
        Gerontologist. 1987; 27: 616-626
        • Brown R.
        • Pain K.
        • Berwald C.
        • Hirschi P.
        • Delehanty R.
        • Miller H.
        Distance education and caregiver support groups: comparison of traditional and telephone groups.
        J Head Trauma Rehabil. 1999; 14: 257-268
        • Backhaus S.L.
        • Ibarra S.L.
        • Klyce D.
        • Trexler L.E.
        • Malec J.F.
        Brain injury coping skills group: a preventative intervention for patients with brain injury and their caregivers.
        Arch Phys Med Rehabil. 2010; 91: 840-848
        • Backhaus S.
        • Ibarra S.
        • Parrott D.
        • Malec J.
        Comparison of a cognitive-behavioral coping skills group to a peer support group in a brain injury population.
        Arch Phys Med Rehabil. 2016; 97: 281-291
        • Carnevale G.J.
        • Anselmi V.
        • Johnston M.V.
        • Busichio K.
        • Walsh V.
        A natural setting behavior management program for persons with acquired brain injury: a randomized controlled trial.
        Arch Phys Med Rehabil. 2006; 87: 1289-1297
        • Kreutzer J.S.
        • Marwitz J.H.
        • Sima A.P.
        • Godwin E.E.
        Efficacy of the brain injury family intervention: impact on family members.
        J Head Trauma Rehabil. 2015; 30: 249-260
        • Grill E.
        • Ewert T.
        • Lipp B.
        • Mansmann U.
        • Stucki G.
        Effectiveness of a community-based 3-year advisory program after acquired brain injury.
        Eur J Neurol. 2007; 14: 1256-1265
        • Adams D.
        • Dahdah M.
        Coping and adaptive strategies of traumatic brain injury survivors and primary caregivers.
        NeuroRehabilitation. 2016; 39: 223-237
        • Borrelli B.
        • Sepinwall D.
        • Ernst D.
        • et al.
        A new tool to assess treatment fidelity and evaluation of treatment fidelity across 10 years of health behavior research.
        J Consult Clin Psychol. 2005; 73: 852-860
        • Clark M.S.
        • Rubenach S.
        • Winsor A.
        A randomized controlled trial of an education and counselling intervention for families after stroke.
        Clin Rehabil. 2003; 17: 703-712
        • Burton C.
        • Gibbon B.
        Expanding the role of the stroke nurse: a pragmatic clinical trial.
        J Adv Nurs. 2005; 52: 640-650
        • Dennis M.
        • O'Rourke S.
        • Slattery J.
        • Staniforth T.
        • Warlow C.
        Evaluation of a stroke family care worker: results of a randomised controlled trial.
        BMJ (Clinical research ed). 1997; 314 ([discussion: 1076-7]): 1071-1076
        • Tilling K.
        • Coshall C.
        • McKevitt C.
        • Daneski K.
        • Wolfe C.
        A family support organiser for stroke patients and their carers: a randomised controlled trial.
        Cerebrovasc Dis. 2005; 20: 85-91
        • Forster A.
        • Dickerson J.
        • Young J.
        • et al.
        A structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysis.
        Lancet. 2013; 382: 2069-2076
        • Lincoln N.B.
        • Francis V.M.
        • Lilley S.A.
        • Sharma J.C.
        • Summerfield M.
        Evaluation of a stroke family support organiser: a randomized controlled trial.
        Stroke. 2003; 34: 116-121
        • Braithwaite V.
        • McGown A.
        Caregivers’ emotional well-being and their capacity to learn about stroke.
        J Adv Nurs. 1993; 18: 195-202
        • Antonini T.N.
        • Raj S.P.
        • Oberjohn K.S.
        • et al.
        A pilot randomized trial of an online parenting skills program for pediatric traumatic brain injury: improvements in parenting and child behavior.
        Behav Ther. 2014; 45: 455-468
        • Petranovich C.L.
        • Wade S.L.
        • Taylor H.G.
        • et al.
        Long-term caregiver mental health outcomes following a predominately online intervention for adolescents with complicated mild to severe traumatic brain injury.
        J Pediatr Psychol. 2015; 40: 680-688
        • Wade S.L.
        • Kurowski B.G.
        • Kirkwood M.W.
        • et al.
        Online problem-solving therapy after traumatic brain injury: a randomized controlled trial.
        Pediatrics. 2015; 135: e487-e495
        • Carey J.C.
        • Wade S.L.
        • Wolfe C.R.
        Lessons learned: the effect of prior technology use on Web-based interventions.
        Cyberpsychol Behav. 2008; 11: 188-195
        • Taylor K.
        • Catroppa C.
        • Godfrey C.
        • et al.
        Managing challenging behaviour in preschool children post-traumatic brain injury with online clinician support: protocol for a pilot study.
        Pilot Feasibility Stud. 2017; 3: 30