Original research| Volume 100, ISSUE 4, SUPPLEMENT , S65-S75, April 2019

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A Randomized Controlled Pilot Study of a Manualized Intervention for Caregivers of Patients With Traumatic Brain Injury in Inpatient Rehabilitation

Published:August 01, 2018DOI:



      Investigate effectiveness of a 5-session manualized intervention for addressing needs of caregivers of persons in acute traumatic brain injury (TBI) rehabilitation.


      Prospective, pilot randomized controlled trial.


      Inpatient brain injury rehabilitation unit, level 1 trauma center.


      Patients (N=93) with moderate-to-severe TBI and their family members were enrolled in the study with 42 randomized to the treatment group, 51 to the control group.


      Five-session manualized caregiver intervention with educational, stress and anxiety self-management, coping, and emotional support components.

      Main Outcome Measures

      Family Needs Questionnaire-Revised, knowledge assessment, Zarit Family Burden Scale, and Brief Symptom Inventory-18 were collected at pretreatment, posttreatment, and 3-month follow-up.


      Treatment group caregivers showed an increase in met needs for emotional, instrumental, and professional support, and brain injury knowledge from baseline to posttreatment, whereas controls did not. Between-group differences were significant for only emotional support needs. Treatment effects were not sustained at 3-month follow-up.


      Caregivers of persons undergoing acute TBI rehabilitation may benefit from interventions that target their unique needs. Caregivers may require additional and longer-term supports to sustain treatment benefits.


      List of abbreviations:

      FNQ-R (Family Needs Questionnaire-Revised), IQR (interquartile range), TBI (traumatic brain injury)
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        • Centers for Disease Control and Prevention
        Report to Congress on traumatic brain injury in the United States: epidemiology and rehabilitation.
        National Center for Injury Prevention and Control, Atlanta2015
        • Family Caregiver Alliance
        Caregiver statistics: demographics.
        (Available at:) (Accessed June 8, 2018)
        • Chronister J.
        • Chan F.
        • Sasson-Gelman E.J.
        • Chiu C.Y.
        The association of stress-coping variables to quality of life among caregivers of individuals with traumatic brain injury.
        NeuroRehabilitation. 2010; 27: 49-62
        • Davis L.C.
        • Sander A.M.
        • Struchen M.A.
        • Sherer M.
        • Nakase-Richardson R.
        • Malec J.F.
        Medical and psychosocial predictors of caregiver distress and perceived burden following traumatic brain injury.
        J Head Trauma Rehabil. 2009; 24: 145-154
        • Chronister J.
        • Johnson E.T.
        • Chan F.
        • Tu W.
        • Chung Y.
        • Lee G.K.
        Positive person–environment factors as mediators of the relationship between perceived burden and quality of life of caregivers for individuals with traumatic brain injuries.
        Rehabil Couns Bull. 2016; 59: 235-246
        • Perrin P.B.
        • Stevens L.F.
        • Sutter M.
        • et al.
        Exploring the connections between traumatic brain injury caregiver mental health and family dynamics in Mexico City, Mexico.
        PM R. 2013; 5: 839-849
        • Kreutzer J.S.
        • Rapport L.J.
        • Marwitz J.H.
        • et al.
        Caregivers’ well-being after traumatic brain injury: a multicenter prospective investigation.
        Arch Phys Med Rehabil. 2009; 90: 939-946
        • Rosenquist J.N.
        • Fowler J.H.
        • Christakis N.A.
        Social network determinants of depression.
        Mol Psychiatry. 2011; 16: 273-281
        • Manskow U.S.
        • Sigurdardottir S.
        • Roe C.
        • et al.
        Factors affecting caregiver burden 1 year after severe traumatic brain injury: a prospective nationwide multicenter study.
        J Head Trauma Rehabil. 2015; 30: 411-423
        • Powell J.M.
        • Wise E.K.
        • Brockway J.A.
        • Fraser R.
        • Temkin N.
        • Bell K.R.
        Characteristics and concerns of caregivers of adults with traumatic brain injury.
        J Head Trauma Rehabil. 2017; 32: E33-E41
        • Van Baalen B.
        • Ribbers G.M.
        • Medema-Meulepas D.
        • Pas M.S.
        • Odding E.
        • Stam H.J.
        Being restricted in participation after a traumatic brain injury is negatively associated by passive coping style of the caregiver.
        Brain Inj. 2007; 21: 925-931
        • Hanks R.A.
        • Rapport L.J.
        • 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
        • Kreutzer J.S.
        • Mills A.
        • Marwitz J.H.
        Ambiguous loss and emotional recovery after traumatic brain injury.
        J Fam Theory Rev. 2016; 8: 386-397
        • Rivera P.
        • Elliott T.R.
        • Berry J.W.
        • Grant J.S.
        • Oswald K.
        Predictors of caregiver depression among community-residing families living with traumatic brain injury.
        NeuroRehabilitation. 2007; 22: 3-8
        • 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
        • Norup A.
        • Perrin P.B.
        • Cuberos-Urbano G.
        • et al.
        Family needs after brain injury: a cross cultural study.
        NeuroRehabilitation. 2015; 36: 203-214
        • Kreutzer J.S.
        • Marwitz J.H.
        • Klyce D.W.
        • et al.
        Family needs on an inpatient brain injury rehabilitation unit: a quantitative assessment.
        J Head Trauma Rehabil. 2018; 33: 228-236
        • Norup A.
        • Petersen J.
        • Mortensen E.L.
        Relatives of patients with severe brain injury: growth curve analysis of anxiety and depression the first year after injury.
        Brain Inj. 2015; 29: 822-829
        • Lehan T.
        • Arango-Lasprilla J.C.
        • de los Reyes C.J.
        • Quijano M.C.
        The ties that bind: the relationship between caregiver burden and the neuropsychological functioning of TBI survivors.
        NeuroRehabilitation. 2012; 30: 87-95
        • 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
        • Carnevale G.J.
        • Anselmi V.
        • Busichio K.
        • Millis S.R.
        Changes in ratings of caregiver burden following a community-based behavior management program for persons with traumatic brain injury.
        J Head Trauma Rehabil. 2002; 17: 83-95
        • Elliott T.R.
        • Shewchuk R.M.
        • Richards J.S.
        Family caregiver social problem-solving abilities and adjustment during the initial year of the caregiving role.
        J Couns Psychol. 2001; 48: 223-232
        • 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
        • Kreutzer J.S.
        • Marwitz J.H.
        • Godwin E.E.
        • Arango-Lasprilla J.C.
        Practical approaches to effective family intervention after brain injury.
        J Head Trauma Rehabil. 2010; 25: 113-120
        • 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
        • 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
        • Damianakis T.
        • Tough A.
        • Marziali E.
        • Dawson D.R.
        Therapy online: a web-based video support group for family caregivers of survivors with traumatic brain injury.
        J Head Trauma Rehabil. 2016; 31: E12-E20
        • 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
        • Perlick D.A.
        • Straits-Troster K.
        • Strauss J.L.
        • et al.
        Implementation of multifamily group treatment for veterans with traumatic brain injury.
        Psychiatr Serv. 2013; 64: 534-540
        • 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
        • Baker A.
        • Barker S.
        • Sampson A.
        • Martin C.
        Caregiver outcomes and interventions: a systematic scoping review of the traumatic brain injury and spinal cord injury literature.
        Clin Rehabil. 2017; 31: 45-60
        • Kreutzer J.S.
        • Kolakowsky-Hayner S.A.
        Getting better (and better) after brain injury: a guide for family, friends, and caregivers.
        Virginia Commonwealth University, Richmond, VA1999
        • Kreutzer J.S.
        Family needs questionnaire.
        Virginia Commonwealth University, Richmond, VA1988
        • Kreutzer J.S.
        • Serio C.
        • Berquist S.
        Family needs following brain injury: a quantitative analysis.
        J Head Trauma Rehabil. 1994; 9: 104-115
        • Serio C.D.
        • Kreutzer J.S.
        • Witol A.D.
        Family needs after traumatic brain injury: a factor analytic study of the family needs questionnaire.
        Brain Inj. 1997; 11: 1-9
        • Bachner Y.
        • O'Rourke N.
        Reliability generalization of responses by care providers to the Zarit Burden Interview.
        Aging Ment Health. 2007; 11: 678-685
        • Katz S.
        • Kravetz S.
        • Grynbaum F.
        Wives’ coping flexibility, time since husbands’ injury and the perceived burden of wives of men with traumatic brain injury.
        Brain Inj. 2005; 19: 59-66
        • Machamer J.
        • Temkin N.
        • Dikmen S.
        Significant other burden and factors related to it in traumatic brain injury.
        J Clin Exp Neuropsychol. 2002; 24: 420-433
        • Derogatis L.R.
        Brief symptom inventory (BSI) 18: administration, scoring and procedures manual.
        NCS Pearson, Inc, Minneapolis, MN2000
        • Boutron I.
        • Altman D.G.
        • Moher D.
        • Schulz K.F.
        • Ravaud P.
        • CONSORT NPT Group
        CONSORT statement for randomized trials of nonpharmacologic treatments: a 2017 update and a CONSORT extension for nonpharmacologic trial abstracts.
        Ann Intern Med. 2017; 167: 40-47
        • Kenward M.G.
        • Roger J.H.
        An improved approximation to the precision of fixed effects from restricted maximum likelihood.
        Comput Stat Data Anal. 2009; 53: 2583-2595
        • Benjamini Y.
        • Hochberg Y.
        Controlling the false discovery rate: a practical and powerful approach to multiple testing.
        J R Stat Soc Series B Stat Methodol. 1995; 57: 289-300
        • 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
        • Rotondi A.J.
        • 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: 14-25
        • Kratz A.L.
        • Sander A.M.
        • Brickell T.A.
        • Lange R.T.
        • Carlozzi N.E.
        Traumatic brain injury caregivers: a qualitative analysis of spouse and parent perspectives on quality of life.
        Neuropsychol Rehabil. 2017; 27: 16-37
        • Warren A.M.
        • Rainey E.E.
        • Weddle R.J.
        • Bennett M.
        • Roden-Foreman K.
        • Foreman M.L.
        The intensive care unit experience: psychological impact on family members of patients with and without traumatic brain injury.
        Rehabil Psychol. 2016; 61: 179-185
        • Baumhover N.C.
        • May K.M.
        A vulnerable population: families of patients in adult critical care.
        AACN Adv Crit Care. 2013; 24: 130-148
        • Davidson J.E.
        • Powers K.
        • Hedayat K.M.
        • et al.
        Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005.
        Crit Care Med. 2007; 35: 605-622