Family caregiving of persons following neurotrauma: Issues in

NeuroRehabilitation 27 (2010) 105–112 105DOI 10.3233/NRE-2010-0585IOS Press

Family caregiving of persons followingneurotrauma: Issues in research, service andpolicy

Neeta A. Ramkumar and Timothy R. Elliott∗Texas A&M University, College Station, TX, USA

Abstract. Family caregivers of persons following neurotrauma function as de facto extensions of our health care system. Theirchallenges may result in negative consequences for their physical and mental health, which directly impacts the well-being of theircare-recipient. In this paper, we survey current practices in providing caregiver support, outline considerations for developingcollaborative interventions, and make recommendations for assessing intervention effectiveness consistent with the nature of theadjustment processes among caregivers and care recipients.

Keywords: Caregivers, neurotrauma, spinal cord injury, brain injury, rehabilitation

1. Introduction

Despite modern society’s advancements in health-care, family members remain the primary long-termcaregivers of individuals with chronic disease and dis-ability [5]. These family caregivers function as in-formal extensions of the health care system by per-forming complex medical and therapeutic tasks [34].Whether family caregivers are needed for 24-hour careor weekend visits, they provide support on behalf ofthe care recipient in a variety of ways including ba-sic activities of daily living (feeding, dressing, bathing,toileting, mobility), instrumental activities of daily liv-ing (transportation, shopping, housework, arrangingservices), medical care (locating a medical specialist,physical therapy, administering medication), adminis-trative care (mediating, negotiating, scheduling, man-aging finances, legal affairs, and insurance issues) andemotional care (maintaining systems of social support,providing encouragement, and attending to spiritualneeds) [17].

∗Address for correspondence: Professor Timothy R. Elliott, De-partment of Educational Psychology, 4225 TAMU, Texas A&M Uni-versity, College Station, TX 77845, USA. Tel.: +1 979 862 3095;Fax: +1 979 862 1256; E-mail: [email protected].

Persons who incur severe neurotrauma necessitatelife-long commitments from a family member to as-sume a caregiver role more than ever as improved emer-gency care has increased accident survival rates andimproved ongoing health care has enabled longer lifeexpectancies [24,34]. The market value of their workexceeds that spent on nursing home care and formalhealth care [37]. Although family caregivers functionas extensions of formal services, they are essentially defacto health care providers without formal training orsupport, and often without routine access to the healthcare systems that rely on their performance [31].

The subsequent declines of the physical and mentalhealth, quality of life, and financial status of caregiversis now well documented [7,36,37] and ultimately im-pact the care recipient. Consequently, the well-beingof family caregivers of persons following the onset ofdisability is a priority in public health [34] and men-tal health policy [33]. Healthy People 2010 [35] urgesbehavioral and social initiatives to promote the healthand quality of life of family caregivers.

Empirical research confirms that many family care-givers of persons with acquired brain and spinal injuriesexperience problems with distress, quality of life, andlifestyle changes [2]; many of these problems are evi-dent many years after injury onset [26]. Nevertheless,

ISSN 1053-8135/10/$27.50 2010 – IOS Press and the authors. All rights reserved

106 N.A. Ramkumar and T.R. Elliott / Family caregiving following neurotrauma

research has yet to identify unique psychological inter-ventions that effectively benefit caregivers of personsfollowing neurotrauma. Very few intervention studieshave been conducted with family caregivers of personswith either spinal cord injuries (SCI) or acquired braininjuries (ABI). Randomized clinical trials (RCTs) thathave been conducted reveal intriguing results that haveimplications for future research and program devel-opment. Evidence supporting caregiver interventions,generally, is available in other clinical areas, but the de-gree to which this work can generalize to caregivers ofpersons with SCI or ABI is open to debate and furtherstudy.

In this paper, we will survey current practices in pro-viding caregiver support following neurotrauma, out-line considerations for developing collaborative inter-ventions, and make recommendations for assessing in-tervention effectiveness consistent with the nature ofthe adjustment processes among caregivers and carerecipients.

2. Current practices

Although it is clear that family caregivers serve acritical function as extensions of the healthcare system,health policy has not yet sufficiently addressed care-givers as a major component of effective treatment. Theliterature suggests that considerable variation exists inthe training and ongoing support provided to caregiversfrom rehabilitation programs. In a brief amount oftime, they need to gain caregiving expertise to keepthe care recipient healthy. This includes informationon the condition, instruction on medical and therapeu-tic regimens, and preparation for scenarios they mayencounter in the community, but third-party payers donot routinely reimburse clinicians for time spent withfamily caregivers and the provision of a comprehensivecontinuum of services for caregivers in rehabilitationprograms is far from consistent.

Most rehabilitation programs relate to family care-givers from a relatively limited perspective, large-ly unaware of historical family dynamics, issues andstrengths, and the context of rehabilitation (particular-ly following neurotrauma) presents the family to staffunder extremely stressful and extraordinary circum-stances. The nature of the rehabilitation enterprise andbudget constraints restricts the focus of many programsto the immediate needs of care and not for adequatecare following discharge to the home or communityplacement. Consideration of the issues and strengths

Table 1Types and formats of interventions often providedto family caregivers in rehabilitation settings∗

Intervention type Intervention format

Psychoeducational LecturesDiscussionWorksheets

Counseling IndividualDyads/FamilyGroup

Supportive Support Groups−Peer-led−Professionally-led

Care-recipient Focused TrainingInformational Resources Professionals

BooksInternet

Multi-component Combination∗Derived from Chwalisz and Dollinger [6].

unique to the family is often limited and available in-tervention research reflects this perspective. Interven-tions are focused on medical management and tailoredto the nature of each specific disability while the psy-chosocial and shared health care issues of family care-givers across disabilities are left largely unaddressed.Consequently, the demands of initial rehabilitation andimpending discharge do not adequately prepare familymembers for the full array of needs and issues care-givers will face as the family tries to resume personal,social and occupational roles in the community.

Previous reviews of interventions studied amongcaregivers of persons with SCI and ABI found no RCTsin this literature [2,28]. Although several studies ofinterventions for caregivers of persons with ABI havebeen conducted, these reviews concluded that method-ological shortcomings in this work limit the confidencein and generalizability of the results. In contrast, thereare many controlled studies of interventions for fam-ily caregivers of age-related conditions (e.g., stroke,dementia, Alzheimer’s Disease) that empirically sup-ported treatments may now be apparent [6]. Table 1presents the different types and formats of interventionsthat are typically examined in the caregiver interven-tion literature; to a great extent, these characteristicsare quite common in programs developed for caregiversof person with SCI and ABI [6]. Interventions vary interms of content and in terms of way in which they areprovided.

2.1. Intervention content

In a recent chapter by Chwalisz and Dollinger [6],family caregiver interventions are described as typically

N.A. Ramkumar and T.R. Elliott / Family caregiving following neurotrauma 107

featuring content intended to increase caregiver knowl-edge or their skills, to improve or change their affect andpromote their adjustment, or to provide support to thecaregiver. These are not mutually exclusive; some in-terventions provide information to increase knowledgeand to promote coping skills, for example.

2.1.1. KnowledgeWhen knowledge is the essential content of the in-

tervention, caregivers are often taught details aboutthe care-recipient’s condition, its management, andtreatment options (during and following rehabilitation).Caregivers are also taught other information deemedimportant by rehabilitation staff for the caregiver toknow (e.g., course/prognosis, secondary complica-tions), general information seeking strategies, and po-tential sources of such information (e.g., professionals,books, internet, agencies). Developing information-seeking skills may be key to ensuring that the caregiversare prepared to deal with circumstances encountered inthe community.

2.1.2. SkillsInterventions for caregivers can also focus on learn-

ing certain skills vital to caregiver performance andwell-being, and to care recipient health and function-ing. This may involve specific care-related skills suchas use of medical equipment or assistive devices, adher-ence to regimens, or ways to assist in activities of dailyliving (e.g., assisting with transfers, dressing). Behav-ior management skills (e.g., managing impulsivity afterTBI) may also be needed [4].

Affect and Adjustment. Caregivers often experiencea wide variety of negative emotions (e.g., guilt, frus-tration, anger, sadness, grief). Some interventions helpcaregivers explore strategies to manage negative emo-tions, stress and burden. Given the stress that familycaregivers seem to face, managing negative emotionsthat may result in depression or anxiety is key to en-suring caregiver adjustment and well-being over time.Stress or anger management, relaxation training, andcognitive behavioral therapy to confront irrational be-liefs and negative affect may be implemented in affect-oriented intervention programs.

2.1.3. Social supportSocial support oriented interventions tend to involve

support groups, with the assumption that putting care-givers together in a group will enhance support. In-terventions targeting social support aim to decreasethe sense of isolation experienced by many caregivers.

These interventions may also attempt to help caregiversincrease the size and range of their support networks,improve their perceptions of available support (this in-cludes identifying current and potential support), andlearn how to get more help from a social network.

Two recent reviews of the relevant literature [2,28]independently concluded that most published studiesof interventions for caregivers of persons with SCI,ABI, and other neurological conditions reported pro-grams that focused on increasing caregiver knowledgeand skill-building; few were concerned caregiver af-fect and adjustment. Some of these were conductedin institutional settings (during the inpatient stays orat out-patient clinics). There were also some novelattempts to study long-distance technologies to pro-vide supportive interventions (e.g. [3]). Several papershave appeared in the peer-reviewed literature reportingthe results of RCTs. Two other papers have appearedreporting preliminary results from two innovative in-terventions for caregivers with long-distance technolo-gies [29] and with a manualized protocol (integratingcognitive-behavioralprinciples and family systems the-ory) for use in an institutional setting [20]. The papersreporting results from the RCTs are particular germaneto the present discussion.

2.2. Insights and lessons from RCTs

Three of the available RCTs were conducted withcaregivers of persons with SCIs [9,11,30]. One wasconducted with family caregivers of adults with trau-matic brain injuries (TBI) [27] and two were conduct-ed with parents of children with TBIs [38,39]. In-terestingly, each study described an intervention thatwas provided to community-residing caregivers withhome visits, long-distance technologies (e.g., telephonesessions, internet-based sessions) or a combination offace-to-face home visits and telephone sessions [9,30].None relied on an institutional-based intervention thatrequired travel to a facility for participation. All ofthe interventions had components to address caregiv-er adjustment, skill building, and information eitherabout the care recipient condition, health, well-being,or behavior.

Furthermore, all but one of these studies provided acognitive-behavioral intervention informed by the so-cial problem-solving model [8]. This model posits thatproblem-solving involves self-efficacy, ability to gatherrelevant information, creativity in generating possiblesolutions, thoughtful evaluation of possible solutions,strategic implementation of solutions, and careful eval-


uation of outcomes. Social problem-solving abilitiesare an important predictor of caregiver physical andemotional health [12] and caregiver problem-solvingmay also be predictive of care-recipient outcomes (e.g.,pressure sores [13]). Three of these studies relied on aprotocol [21] that solicited specific problems unique toeach caregiver and followed and outlined specific stepsfor training caregivers in problem-solving strategies toaddress these problems [9,11,27].

The other remaining study [30] relied on an estab-lished protocol developed in the largest multi-site clin-ical trial of psychosocial interventions for family care-givers of persons with dementia and Alzheimer’s’ Dis-ease (Project REACH [14]). Of the RCTs identified,this was the only one that had a multi-site trial or specifi-cally targeted older caregivers and care recipients (withSCI) or had three comparison groups (two treatmentgroups, one control group) or featured an interventionfor both caregiver and care-recipient. It also had thelargest samples for participation and analysis.

Although each study reported beneficial effects fora treatment condition (compared to the control group),variations occurred across studies by outcomes and bymagnitude. For example, Elliott and Berry [9] founda brief, three session problem-solving treatment (PST)combined with education had no significant effect oncaregiver depression over the year of participation, incomparison to the usual-care control group. Caregiverswho participated in the treatment group evidenced asignificant decrease in dysfunctional problem-solvingskills (which resulted in a large effect size) and they re-ported a steady increase in the their social functioning(as caregivers in the usual care group reported a steadydecrease; this was a moderate effect). Remarkably, thiswas the only RCT that recruited family members whohad just assumed the caregiver role for an individualwho had recently incurred SCI. It should also be not-ed that the usual-care control had a much higher attri-tion rate (26.7%) than the enhanced treatment group(13.3%), implying that a usual-care control conditionmay be inadequate to maintain caregiver interest andcommitment in a research protocol over the first yearof the caregiver role (following acquired SCI).

A subsequent extension of this intervention (com-bining face-to-face home sessions with monthly video-conferencing) for caregivers in the PST and education-only control groups found significant effects for PSTon caregiver depression (with a small effect to moder-ate size) and on care recipient social functioning (witha small to moderate effect size) over the year of partic-ipation [11]. There were several intriguing aspects to

the overall results. First, the PST group did not reportany significant differences in problem-solving abili-ties; consequently, decreases in depression could not betheoretically attributed to desired changes in problem-solving abilities. Similarly, significant increases incare recipient social functioning for caregivers receiv-ing PST could not be attributed to changes in caregiv-er problem-solving abilities. Second, intention-to-treatand efficacy analyses revealed inconsistencies in thetype of change in caregiver depression over time. ITTanalysis (with multilevel modeling techniques [22]) in-dicated that this change was linear (i.e., a steady de-crease over time in response to PST, a process often as-sumed in counseling and psychotherapy research [16]).Yet efficacy analyses suggested that the decrease incaregiver depression in response to PST was due to aquadratic change: Caregivers receiving PST reporteda steep decrease in depression at the 6th month as-sessment, but the scores leveled out and no differenceswere evident with the control group at the 12th monthassessment. Finally, it is worth noting that this studyreported the highest overall attrition rate (26%) of theRCTs identified.

The Schultz et al multi-site trial [30] reported a largesample (N = 173 caregiver – care recipient dyads) anda very low attrition rate (12–14%) over the 6 monthsof treatment (and for the follow-up assessment at the12 month). Unlike the other studies, however, primaryanalyses relied on change scores on the major outcomevariables. Consonant with the Project REACH proto-col and findings (reflected, in part, in Table 2) [14],caregivers assigned to the treatment group received amulti-component treatment protocol that was designedto target their specific individual needs, based on a riskassessment. Each participant received five individualsessions in the home and two by telephone, and fivesupport group sessions via telephone over a 6-monthperiod. In the dyad condition, the caregiver receivedthis same treatment and the care recipient received thesame number and type of contacts based on their riskprofile, with an added component that discussed theimpact of caregiving on the family caregiver. The con-trol group received the same information packet pro-vided to participants in the other treatment conditionsand telephone contacts at months 3, 5 and 9. Care-givers in the dyadic treatment group had significantlyfewer health problems than the other two groups, andless depression than the caregiver-only treatment group(and the effect sizes were in the moderate range). Theuse of change scores precluded an analysis of possiblequadratic changes in the sample, and conveys an un-


Table 2Characteristics of effective caregiver programs∗

1. Contact with a helper over time2. Contact with a helper who has specific intervention protocols to follow3. Interventions and care plans tailored to the caregiver’s specific needs4. Multi-component interventions that include a combination of knowledge, skill building, problem solving and counseling5. Interventions with higher intensity (e.g. greater frequency and duration)6. Using a combination of home-visiting, telephone follow-up, internet and telehealth technology to deliver7. Programs developed and implemented locally and involving agency collaboration∗Available from the Rosalyn Carter Institute at http://www.rosalynncarter.org/effective2/.

substantiated impression that linear change occurred inresponse to the treatment [32].

To date, there is only one RCT of a psychologicalintervention concerning caregiving of adults followingbrain injury [27]. This problem-solving interventionwas an extension of the Project FOCUS [21] protocolstudied by Elliott and colleagues [9,11]. Caregiversassigned to the PST group received four face-to-facein-home sessions and 8 telephone sessions with an in-terventionist over a 12-month period. Participants inthe control condition received monthly telephone con-tacts in addition to educational assignments. Trajectorymodeling techniques [22] revealed significant quadraticinteractions for the PST group over time. In their initialresponse to PST, caregivers experienced a heightenedtrajectory in their depression scores that subsequentlyevidenced a steep decrease at the 12th month assess-ment, indicating a favorable and significant response totreatment. In contrast, caregivers in the control groupexperienced a steady increase in depression scores overtime (and the effect size was moderate). Similar tothe Elliott and Berry study [9], caregivers receivingPST evidenced a significant linear decrease in dysfunc-tional problem-solving styles over the 12 months andthis effect size was large. Post-hoc analyses indicatedthat the beneficial effects of PST were not attributableto possible improvements in care recipient function-al ability over time, and was some indication that de-creases in depression in the PST group were associ-ated with decreases in dysfunctional problem-solvingstyles, consistent with the theoretical model. However,the rather dramatic change in the trajectory of depres-sion for caregivers in the PST group implies that care-givers may have experienced an increase in distress be-fore the beneficial effects over time. It may be possiblethat these caregivers may have experienced difficultyimplementing problem-solving principles or, at least,encountered some difficulty in changing their problem-solving approaches in their ongoing interactions with acare recipient with TBI.

The results of the Rivera et al study [27] is partic-ularly intriguing in light of a parallel RCT that relied

on the same design and method with an explicit focuson family caregivers of women with a variety of sev-er disabilities (including stroke, cerebral palsy, men-tal retardation, etc.) [10]. The caregivers assigned tothe PST experienced significant linear decreases, un-like the quadratic change observed in TBI caregivers ofthe Rivera et al. study. Finally, an ad hoc analysis ofthe TBI sample revealed that care recipients with care-givers who received PST in the Rivera et al. study dis-played a significant decrease in depressive symptomsovertime [1].

Upon close inspection, the studies by Wade andcolleague [38,39] reported specific findings from thesame RCT conducted with families of 46 children withTBI. The treatment group featured 14 sessions thatwere downloaded from a web-site at specified intervals.These sessions covered the fundamental componentsof the social problem-solving model, education aboutTBI and management of problems associated with pe-diatric TBI, and education about family communica-tion skills. The control group had access to a web-pagethat made other educational and instructional materialson the web available to family members. In one report,Wade et al. [38] found that family members in the treat-ment conditions reported less distress, depression andanxiety at completion than those in the control group(and effect sizes ranged from moderate to large). In thesecond report [39], parents in the treatment group re-ported better child self-management/compliance thanparents in the control group (with a large effect size).These studies featured two assessment occasions, solinear changes in response to treatment are assumed.

3. Issues and resolutions for practice, research andpolicy

Collectively, evidence from RCTs conducted to dateindicate that psychological interventions for familycaregivers of persons who have incurred neurotraumacan effectively lower caregiver distress (and perhaps,depressive symptoms) and improve their ability to solve


problems that may be related to coping with everydayproblems. There is also evidence that interventions di-rected at caregivers can have beneficial contagion ef-fects on care recipients, although the theoretical rea-sons for how and why these effects may occur have yetto be clarified. There is also accumulating evidencethat “usual care” or “treatment as usual” is inferior toenhanced interventions that address the problems ex-perienced by caregivers and provide them with skills toresolve the issues they face.

These data raise other captivating issues. It seemspossible that caregivers may benefit from interventionsfor reasons other than the presumed theoretical prop-erties that guide the intervention [11]. Caregivers mayvary in their response to treatment and this might berelated to several issues such as the care recipient con-dition, relationship with the care recipient, or the natureof problems that are of immediate concern. For exam-ple, we do not know why caregivers in the Rivera etal. study [27] evidenced an increase in their depressiontrajectory before they experienced a steep decline, in-dicative of a positive, beneficial response to treatmentthat was not apparent until multiple sessions had tran-spired. We suspect that these caregivers encounteredsome resistance as they tried to supplant routine be-haviors with newly learned problem-solving strategies.These are issues that require further research.

More generally, we also believe that future studiesshould have multiple measurement occasions and con-duct ITT and efficacy analyses that are sensitive to tra-jectories of change in response to treatment and pos-sible mediators of change for both caregiver and carerecipient. Not all changes in response to psychologi-cal interventions are conveniently linear; we know thatreal-life setbacks and dramatic improvements can occur(indicative of “quadratic” changes [16]). Sophisticateddesigns and corresponding analytic strategies will helpus determine mechanisms of change for both caregiverand care recipient.

Ideally, psychological interventions for caregiversare theory-driven (as the majority of the RCTs reviewedwere). The Schulz et al intervention [30], however,was based largely on empirical evidence gathered froma larger project that examined interventions for care-givers of persons with age-related dementias. Manyof the implications of this work are represented in Ta-ble 2 (and available from the Rosalyn Carter Institutefor Caregiving, http://rci.gsw.edu/). One of the majorinsights from the Project REACH studies is that “moreis better” for caregivers; essentially, programs that pro-vide services, support, information, and skill building

with a relative intensity (in terms of frequency and dura-tion) have a greater positive effect than circumscribed,infrequent, and educationally based programs [14]. Al-though we do not know the degree to which data ob-tained from caregivers of individuals with age-relatedcognitive-declines can be generalized to caregivers ofpersons who have experienced neurotrauma, the initialevidence from Schulz et al. [30] suggests that multi-modal, home-based services designed to address the is-sues relevant to a motivated caregiver and care recipientdyad may be quite effective.

This observation should be tempered by two obviousfactors. First, evidence from these RCTs are largely re-stricted to participants who share an interest in psycho-logical interventions, and who are willing to participatein one. There are many scenarios in which caregiver-care recipient dyads are not receptive to psychologi-cal approaches to their situation. Furthermore, thereare scenarios in which a caregiver may be receptive toa psychological intervention, but a care recipient maynot be interested or capable of participating. Second,it is possible that the older participants in the Schulzet al. [30] were in rather stable relationships and werethus able to meet the time commitment of the researchproject that younger, or more recently-injured individ-uals, could not. The first year following neurotraumais marked by many dynamic changes that overwhelmmany caregiver – care recipient relationships. Thismay, in part, contributed to the attrition problems andlimited effects of the Elliott and Berry study [9].

These matters raise another concern for research andpractice. Many factors impinge on caregiver-care re-cipient well-being and functioning, and most of themwill remain outside the control of any well-designedRCT. In the best of circumstances, these factors canonly be managed among consenting participants withan effective randomization strategy, but their effectscan still adversely affect RCTs that recruit small sam-ples. Consequently, significant effects that occur inmost RCTs for community-residing caregivers of per-sons following neurotrauma will likely result in small tomoderate effect sizes. Alternatively, this reality makesthe large effect sizes reported in some of the RCTs todate even more impressive.

The evidence to date also illustrates the potential oflow-cost long-distance technologies in helping familycaregivers. A variety of telecommunication technolo-gies improve accessibility to information and servicesfor individuals who are otherwise limited by mobili-ty problems, compromised health status, or prohibitivedistances to hospitals or clinics. These data clearly in-


dicate that home-based services can employ telephone,videoconferencing devices, and internet-based proto-cols effectively, if in fact the material is strategicallyand appropriately tailored for the individual caregiver.

Programs developed to provide caregivers with on-going, community-basedassistance must fully embracethe reality that an individual’s lifestyle and day-to-daychoices – and the immediate social factors that influ-ence these behaviors – will have more impact on thecourse of their health than services offered by any sin-gle health profession [15]. This perspective necessi-tates a calculated move away from a “top-down” viewof service in which experts prescribe the core elementsof ongoing care to one that promotes a participatoryethic with individuals and their families [25,31]. Effec-tive program and policy development for families wholive with disability and other chronic health problemsmay be realized when they are recognized as expertson their service needs, and they can exercise an ele-ment of choice, control, and direction in the deliveryof services [19]. This ethic is necessary to circumventenvironmentally imposed limitations and restrictionsthat contribute to the health disparities experienced bythese families [23]. By seeking to empower the activerole of family caregivers in promoting their own healthand well-being, these kinds of programs are essential todeveloping collaborative partnerships with people wholive with disabilities and their families [18].

Acknowledgements

This paper was supported by grants from the Nation-al Institute on Child Health and Human Development(# R01HD37661), from the Moody Foundation, andfrom the U.S. Department of Health and Human Ser-vices, Centers for Disease Control and Prevention – Na-tional Center for Injury Prevention and Control to theUniversity of Alabama at Birmingham, Injury ControlResearch Center (R49/CE000191).

References

[1] J.W. Berry, T. Elliott and J.S. Grant, Caregiver treatment im-pact on TBI care recipient depression, National Violence andInjury Prevention Research Conference: From Discovery toPractice Abstracts book, Atlanta, GA: Centers for DiseaseControl, March (2009), 11.

[2] K. Boschen, J. Gargaro, C. Gan, G. Gerber and C. Brandys,Family interventions after acquired brain injury and otherchronic conditions: a critical appraisal of the quality of theevidence, NeuroRehabilitation 22 (2007), 19–41.

[3] R. Brown, K. Pain, C. Berwald, P. Hirschi, R. Delehanty andH. Miller, Distance education and caregiver support groups:Comparison of traditional and telephone groups, Journal ofHead Trauma Rehabilitation 14 (1999), 257–268.

[4] G.J. Carnevale, V. Anselmi, K. Busichio and S.R. Mil-lis, Changes in ratings of caregiver burden following acommunity-based behavior management program for personswith traumatic brain injury, Journal of Head Trauma Rehabil-itation 17 (2002), 83–95.

[5] R. Carter, Addressing the caregiver crises, Preventing Chron-ic Disease 5(1) (2008), 1–2. http://www.cdc.gov/issues/2008/jan/07 0162.htm. Accessed February 8, 2008.

[6] K. Chwalisz and S.C. Dollinger, Evidence-based Practice withFamily caregivers: Decision-making strategies based on re-search and clinical data, in: Handbook of Rehabilitation Psy-chology, (2nd ed.), R.G. Frank, B.R. Caplan and M. Rosenthal,eds, Washington, DC: American Psychological Association,2010, pp. 301–311.

[7] K. Donelan, M. Falik and C. DesRoches, Caregiving: Chal-lenges and implications for women’s health, Women’s HealthIssues 11 (2001), 185–200.

[8] T.J. D’Zurilla and A.M. Nezu, Problem-solving therapy: A so-cial competence approach to clinical intervention, New York:Springer (1999).

[9] T. Elliott and J.W. Berry, Brief problem-solving training forfamily caregivers of persons with recent-onset spinal cord in-jury: A randomized controlled trial, Journal of Clinical Psy-chology 65 (2009), 406–422.

[10] T. Elliott, J.W. Berry and J.S. Grant, Problem-solving trainingfor family caregivers of women with disabilities: A random-ized clinical trial, Behaviour Research and Therapy 47 (2009),548–558.

[11] T. Elliott, D. Brossart, J.W. Berry and P.R. Fine, Problem-solving training via videoconferencing for family caregiversof persons with spinal cord injuries: A randomized controlledtrial, Behaviour Research and Therapy 46 (2008), 1220–1229.

[12] T. Elliott, R. Shewchuk and J. Richards, Family caregiver so-cial problem-solving abilities and adjustment during the initialyear of the caregiving role, Journal of Counseling Psychology48 (2001), 223–232.

[13] T. Elliott, R. Shewchuk and J.S. Richards, Caregiver socialproblem-solving abilities and family member adjustment torecent-onset physical disability, Rehabilitation Psychology 44(1999), 104–123.

[14] L.N. Gitlin, L.D. Burgio, D. Mahoney, R. Burns, S. Zhang, R.Schulz et al, Effect of multicomponent interventions on care-giver burden and depression: The REACH multisite initiativeat 6-month follow-up: Resources for enhancing Alzheimer’scaregiver health (REACH), Psychology and Aging 18 (2003),361–374.

[15] T.A. Glass and M. McAtee, Behavioral science at the cross-roads in public health: Extending horizons, envisioning thefuture, Social Science and Medicine 62 (2006), 1650–1671.

[16] A.M. Hayes, J.P. Laurenceau, G. Feldman, J. Strauss and L.Cardaciotto, Change is not always linear: The study of non-linear and discontinuous patterns of change in psychotherapy,Clinical Psychology Review 27 (2007), 715–723.

[17] A. Horowitz, Family caregiving to the frail elderly, in: Annu-al review of gerontology and geriatrics, C. Eisdorfer, ed., 5(1985), 194–246.

[18] B.A. Israel, A.J. Schulz and E.A. Parker and A.B. Becker,Review of community-based research: Assessing partnershipapproaches to improve public health, Annual Review of PublicHealth 19 (1998), 173–202.


[19] J.F. Kosciulek, Implications of consumer direction for dis-ability policy development and rehabilitation service delivery,Journal of Disability Policy Studies 11 (2000), 82–89.

[20] J. Kreutzer, T. Stejskal, J. Ketchum, J. Marwitz, L. Taylorand J. Menzel, A preliminary investigation of the brain injuryfamily intervention: Impact on family members, Brain Injury23 (2009), 535–547.

[21] M. Kurylo, T. Elliott and R. Shewchuk, FOCUS on the familycaregiver: A problem-solving training intervention, J CounselDevelop 79 (2001), 275–281.

[22] O.M. Kwok, A. Underhill, J.W. Berry, W. Luo, T. Elliott andM. Yoon, Analyzing longitudinal data with multilevel models:an example with individuals living with lower extremity intra-articular fractures, Rehabilitation Psychology 53 (2008), 370–386.

[23] D. Lollar, Rehabilitation psychology and public health: Com-monalities, barriers, and bridges, Rehabilitation Psychology53 (2008), 122–127.

[24] D.E. Lollar and J. Crews, Redefining the role of public healthin disability, Ann Rev Public Health 24 (2003), 195–208.

[25] D. Mechanic, Public trust and initiatives for new health carepartnerships, The Milbank Quarterly 76 (1998), 283.

[26] A. Perlesz, G. Kinsella and S. Crowe, Impact of traumaticbrain injury on the family: A critical review, RehabilitationPsychology 44 (1999), 6–35.

[27] P. Rivera, T. Elliott, J. Berry and J. Grant, Problem-solvingtraining for family caregivers of persons with traumatic braininjuries: A randomized controlled trial, Archives of PhysicalMedicine and Rehabilitation 89 (2008), 931–941.

[28] A.M. Sander, Interventions for caregivers, in: Rehabilitationfor traumatic brain injury, W.M. Higher, A.M. Sander, M.A.Struchen and K.A. Hart, eds, New York: Oxford UniversityPress, 2005, pp. 156–175.

[29] A. Sander, A. Clark, T. Atchison, R. Timothy and M. Rueda,A Web-Based Videoconferencing Approach to Training Care-givers in Rural Areas to Compensate for Problems Related toTraumatic Brain Injury, Journal of Head Trauma Rehabilita-tion 24 (2009), 248–261.

[30] R. Schultz, S. Czaja, A. Lustig, B. Zdaniuk, L. Matire andD. Perdomo, Improving the quality of life of caregivers ofpersons with spinal cord injury: A randomized controlled trial.Rehabilitation Psychology 54 (2009), 1–15.

[31] R. Shewchuk and T. Elliott, Family caregiving in chronic dis-ease and disability: implications for rehabilitation psychol-ogy, in: Handbook of rehabilitation psychology, R.G. Frankand T. Elliott, eds, Washington, DC: American PsychologicalAssociation Press, 2000, pp. 553–563.

[32] D.E. Stull, Analyzing growth and change: latent variablegrowth curve modeling with an application to clinical trials,Quality of Life Research 17 (2008), 47–59.

[33] Surgeon General’s Workshop on Women’s Mental Health,Workshop Report (November 30–December 1, 2005). D.C.Washington, Department of Health and Human Services.(2005).

[34] R.C. Talley and J.E. Crews, Framing the public health of care-giving, American Journal of Public Health 97 (2007), 224–228.

[35] U.S. Department of Health and Human services. Healthypeople 2010. Washington, DC: U.S. Department of Healthand Human Services (2000), Available at http://www.health-gov.healthy people.

[36] P.P. Vitaliano, J. Zhang and J. Scanlan, Is caregiving hazardousto one’s physical health? A meta-analysis, Psychological Bul-letin 129 (2003), 946–972.

[37] P.P. Vitaliano, H. Young and J. Zhang, Is caregiving a riskfactor for illness? Current Directions in Psychological Science13 (2004), 13–16.

[38] S.L. Wade, J. Carey and C.R. Wolfe, An online family inter-vention to reduce parental distress following pediatric brain in-jury, Journal of Consulting and Clinical Psychology 74 (2006),445–454.

[39] S.L. Wade, J. Carey and C.R. Wolfe, The efficacy of an onlinecognitive-behavioral family intervention in improving childbehavior and social competence in pediatric brain injury, Re-habilitation Psychology 51 (2006), 179–189.

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