Embed Size (px)
Citation preview
Brain Injury, July 2008; 22(7–8): 535–543
Perspectives of survivors of traumatic brain injury and their
caregivers on long-term social integration
HELENE LEFEBVRE, GENEVIEVE CLOUTIER, & MARIE JOSEE LEVERT
Faculty of Nursing, Universite de Montreal, Montreal, Quebec, Canada
(Received 22 January 2008; accepted 24 April 2008)
AbstractBackground: Traumatic brain injury (TBI) has damaging impacts on victims and family members’ lives and their long-termsocial integration constitutes a major challenge.Purpose: The objective of the study was to document the repercussions of TBI on victims’ long-term social integration(10 years post-trauma) and the contribution made by the services received from the point of view of TBI victims and familycaregivers. This article examines the determinants of long-term social integration as well as the impact of TBI on familycaregivers.Methods: A qualitative design was used (semi-directed interviews). The sample consisted of 22 individuals who hadsustained a moderate or severe TBI and 21 family caregivers.Results: The results show that TBI is an experience that continues to present difficulties, even 10 years after the accident,and that different barriers contribute to this difficulty: not going back to work, depressive episodes, problems inrelationships and sequellae. Family caregivers must help TBI victims confront the barriers in their path.Implications: This study adopts a longitudinal perspective to help professionals determine how to intervene with TBI victimsand their families. It validates the importance of having clients and family caregivers describe their reality.
Keywords: Brain injuries, community reintegration, qualitative research, psychosocial aspects of illness
Introduction
Traumatic brain injuries (TBI) are a major source ofmorbidity and an important issue for health systemsin industrialized countries [1]. Approximately 18 000Canadians are hospitalized annually for a TBI [2].Advances in medical sciences have increased lifeexpectancies for people with a TBI [3], yet the TBImight affect them and their family for the rest of theirlives. This paper presents the results of a studyexploring the long-term impact of TBI and the factorsassociated with social integration.
Background
In the world of the handicapped, social integration isdefined as a collective situation of mutual adjustment
involving both a person with a disability and theirfamily and friends in settings mainly frequented byactors without disabilities [4–7]. Social integrationrefers to the satisfaction experienced by the individualin their life situation, their sense of communityaffiliation and their self-image. Authors who haveexamined the social integration (SI) issues faced byhandicapped people have suggested four bases:having access to a normalized and adequate livingenvironment (appropriate and safe); maintaininga range of interpersonal relationships (significantand satisfying) that extend beyond the family; beingable to contribute to society through their actions(including paid work or another productive activity);and having access to recreational activities that allowthem to express their individuality and attain their fullpotential [8].
Correspondence: Helene Lefebvre, PhD, Associate Professor, Faculty of Nursing, Universite de Montreal, Lucie Bruneau Rehabilitation Centre(Research Department), 2275 Laurier Street East, Montreal, Quebec H2H 2N8, Canada. Tel: 514-527-4527, ext. 2755. Fax: 514-527-7968.E-mail: [email protected]
ISSN 0269–9052 print/ISSN 1362–301X online � 2008 Informa UK Ltd.DOI: 10.1080/02699050802158243
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y C
DL
-UC
San
ta C
ruz
on 1
0/25
/14
For
pers
onal
use
onl
y.
As for the social integration of people with TBIs,this study has used the definition proposed byReistetter and Abreu [9]. The authors prefer theterm ‘community integration’, which they define asthe opportunity to have a place to live, maintaina social network and be engaged in a productiveactivity. Some studies have focused on specificoutcomes and identified some of the factors asso-ciated with the social integration of TBI persons.Among these determinants, family and close friendsrepresent one of the most important environmentalfactors [10, 11]. Another determinant of socialintegration identified in many studies is the copingprocess [10]. While the TBI and subsequentsequellae are well-known determinants of socialintegration, an even more important role is playedby the competencies and adaptive resources used bythe individual and family caregivers to cope with thehealth problem and the resulting changes.
When the persons go home, support from thecommunities with which they come into contact—help and support in performing their activities andplaying their social roles, adjustment and reconfi-guration of settings to facilitate activities and ful-filling of social roles—influences the quality of theirintegration [10]. Studies have shown that commu-nity support needs to be long-term [1, 11, 12]. Yet,despite the efforts of clinicians and health organiza-tions in recent years, access to suitable rehabilitationservices and support services for social integrationthat meet the specific needs of this clientele is stillwoefully inadequate [1, 11]. Various Quebec authors[13–15] have recommended that the resourcesand services organized in a network based ona philosophy of collaboration between professionalsand organizations (intrasectoral and intersectoral)should be complementary and located closer tofamilies’ homes; duplication of services should beeliminated, continuity of services assured and wait-ing times reduced. This requires a change in the careand services provided for the TBI clientele.
Conceptual framework
The conceptual foundation of this study has beenlargely based on two articles. The premise for theanalytical framework came from McColl et al. [5]:the social integration of individuals who havesuffered a TBI and family caregivers is determinedby a process of interaction and inter-relationbetween the accomplishment of daily activities,acceptance by and integration in the community,relations with other people, changes in the person
and those close to them, satisfaction/dissatisfactionwith the insurance system and policies, positivechanges and how they view the future and their lifeplans. On the other hand, the tools used for datacollection were derived from the HandicapProduction Process (HPP),y in which ‘a socialparticipation situation corresponds to the degree towhich living skills are realized’ and a life skill isa current activity or a social role that the person ortheir sociocultural environment values. The life skillis defined in terms of personal characteristics (age,sex, cultural values, etc.) [16].
Purpose and objectives
This study had four specific objectives: (1) todescribe the social participation of persons 10 yearsor more after their head trauma; (2) to identify thepersonal and environmental factors that play keyroles in their social participation; (3) to describe thelong-term impacts of TBIs on their family andfriends; and (4) to identify how the health and socialservices network (associations and inter-sectoralgroups) is used in response to their changingneeds. By concern of synthesis, this article willaddress qualitative data (objectives 2 and 3).Quantitative results are presented in the researchreport [17].
Methods
Sample and recruitment
This convenience sample came from a sampleassembled some 10 years ago for the TraumaProject [17], which sought to evaluate the overallconsequences of a moderate or severe TBI.The original project had 46 participants, of whichthe authors were able to trace 34 people/families.In this reduced group, four had died, four werenot interested in participating and four wereexcluded (since they did not live in the GreaterMontreal region anymore), giving a sample com-prised of 22 participants who had suffereda moderate or severe TBI some years previously(a mean of 12.8 years earlier). The exclusioncriteria were determined by the original TraumaProject [17], resulting in a sample of people whohad suffered a medium or severe trauma.Sociodemographic data on the sample is presentedin Table I. The TBI victims were francophones,mostly males (15), aged between 40–49 years old(mean age: 42.4).
y This concept of the handicap production process (HPP) has served as a conceptual basis for many of the tools developed for rehabilitation, the living skillsmeasure (MHAVIE) and the environment quality measure (MQE) (Fougeyrollas and Noreau, 1997 [31]).
536 H. Lefebvre et al.
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y C
DL
-UC
San
ta C
ruz
on 1
0/25
/14
For
pers
onal
use
onl
y.
Of the 22 participants interviewed, 21 gavepermission to speak to a family caregiver (eithersomeone living with the participant, a familymember that the participant sees often or anyonethe participant thought had played a significant rolein their life for at least a year). Table II provides dataon the sex of the caregiver and their relation to theparticipant.
Family members were either: a father or mother(6), a child (2), a sibling (1), a spouse (4), a common-law spouse (4), a friend (2), an ex-spouse (1) ora resource person at the residential care centre (1).The family caregivers were mostly females (12).
Data collection
Following guidelines for qualitative interview devel-opment [18], a semi-directed guide was developed.This guide was based on a review of the literature onsocial integration, conceptual frameworks and find-ings from a focus group held with individuals who
had had a TBI and one of their family/friends.The focus group was used to validate their definitionof the concept of social participation and influentialfactors. The guide consisted of open-ended ques-tions regarding social integration during the initialmonths following the TBI and during the yearpreceding the interview. The questions were aimedat identifying facilitating factors and obstacles foreach aspect of social participation (e.g. Tell meabout your activities of daily living. What are thefactors which facilitate their realization? What are thebarriers?). Family members and friends were alsoasked to answer open questions on the long-termchanges that had occurred in their own livesfollowing the TBI (e.g. What changes have occurredin your life since the accident?).
Semi-structured interviews were used becausethey enable the researchers to explore differentaspects of the participants’ experience and accesstheir own experience [19, 20]. Interviews wereconducted simultaneously with the TBI survivors
Table I. Socio-demographic characteristics of TBI subjects.
Characteristics Percentage of sample
Age (mean age 42.4) g 30–39: 45.5%. 50–59: 9%g 40–49: 36.4% 60 and over: 9%
Gender g Male: 68.2% Female: 31.8%
Marital status g Single: 27.3% Married: 27.3%g De facto union: 27.3% Separated/Divorced: 18.2%
Ethnic origin g Canadian: 86.4% Portuguese: 4.5%g Haitian: 9.1%
Occupation prior to TBI g Paid employment: 54.5% Volunteering: 4.5%g Family responsibilities: 27.3% No occupation: 13.6%
Table II. Socio-demographic characteristics of family members.
Characteristics offamily members Percentage of sample
Age g 18–29: 4.8% g 40–49: 23.8%g 30–39: 28.6% g 50 and over: 42.9%
Gender g Male: 42.9% g Female: 57.1%
Relationship to personwith TBI
g Father/Mother: 28.6% g Spouse: 38.1%
g Child: 9.5% g Friend: 14.3%g Sibling: 4.8% g Ex-spouse: 4.8%
Marital status g Single: 19.1% g Married: 52.4%g De facto spouse: 23.8% g Separated/divorced: 4.8%
Education g Primary school: 9.5� g College: 47.6%g High school: 23.8% g University: 19.1%
Etlinic origin g Canadian: 85.7% g Portuguese: 4.8%g Haitian: 9.5%
Principal occupation g Work (>20 hrs/wk): 52.4% g Family obligations: 4.8%g Work (<20 hrs/wk): 4.8% g Retired: 14.3%g Studies: 14.3% g No occupation: 9.5%
Perspectives of survivors of TBI and their caregivers 537
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y C
DL
-UC
San
ta C
ruz
on 1
0/25
/14
For
pers
onal
use
onl
y.
and the family caregiver (met with separately by twotrained research assistants) in their homes. Audiorecordings were made of the interviews (whichaveraged 90 minutes).
Data analysis
A thematic content analysis was performed based onthe procedure used by Paterson et al. [21]. First,a transcript of each interview was compiled from theaudiotapes. An initial analysis identified emergentthemes and extracted their meaning. Each statementwas coded by unit of meaning and grouped by themein order to reduce the amount of data and extract itsmeaning. A second level of analysis then identifiedareas of convergence and divergence in the data andpinpointed common threads. The co-researchersread and approved the verbatim transcriptions anddata coding to ensure internal validity (inter-raterreliability of transcript coding). The process wasiterative, i.e. the analysis was built up and fine tunedas the analysis process proceeded and was supportedby consulting the log and analytical, methodologicaland theoretical notes. This methodological rigourwas supported by application of the following qualitycriteria [22, 23]:
(1) credibility (which is similar to internal validity)was ensured by triangulating the data obtainedduring regular validation of the minutes ofmeeting from the working group, index cards,summaries of handwritten notes and a logbookas well as triangulation of the qualitative results;
(2) transferability (which is similar to externalvalidity) was ensured by making a detaileddescription of background information on thestudy, such that it was possible for the reader tounderstand and predict a similar situationoccurring in similar circumstances; and
(3) consistency (which is similar to reliability) wasensured by recording any change made to theresearch process in the logbook.
Ethical considerations
The study protocol was approved by research ethicscommittees of organizations involved in the project.The rules of free and informed consent and ofconfidentiality of data were respected.
Results
Based on the results, researchers were able to assesspeople’s satisfaction with their long-term socialintegration, identify the factors influencing thelong-term social integration of TBI individuals anddocument the impact on the family. The first sectionbelow provides data collected from people with TBIs(Objective 2) to determine the factors influencingtheir social participation, while the second sectionprovides the comments of family and friends onthe impact that the TBI has had on their lives(Objective 3). Determinants and barriers to socialintegration are summarized in Table III.
Long-term social integration of persons with a TBI
When asked to rate their current social integration,almost half of the TBI participants (45.5%) said theywere satisfied. For these people, satisfying socialintegration was expressed as an overall sense of well-being. This state is achieved after weathering theordeal of the TBI. However, half of the TBIindividuals were ambivalent to or even dissatisfiedwith their current social integration.
Determinants of social integration. Whether the TBIparticipants were satisfied, moderately satisfied or
Table III. Determinants and barriers to social integration.
Determinant/barriers to social integration Impact
Safeguarding/developing family life � Promotes a positive self-image� Supports social contacts� Allows continuation of rehabilitation
Having a spiritual life � Ascribes a positive meaning to the TBI eventReceiving long-term follow-up services � Reassures and gives the sense of not being
entirely on their ownBeing unable to return to work � Diminishes satisfaction toward social integration
� Reduces self-esteemHaving a depressive episode � Consolidates social isolation and withdrawalAbusing of alcohol or other illicit substance � Diminishes cognitive capacities
� Affects negatively social relationshipsExperiencing divorce or separation � Contributes to the collapse of the social network
� Consolidates social isolationTBI sequellae � Stigmatizes survivors
� Makes social exchanges difficult
538 H. Lefebvre et al.
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y C
DL
-UC
San
ta C
ruz
on 1
0/25
/14
For
pers
onal
use
onl
y.
not satisfied with their social integration, the servicesthey received during the functional rehabilitationphase helped facilitate their integration. However,the shortage of post-rehabilitation resources meantthat people had to look to their own resources inorder to cope: ‘They restored just enough functionfor me to interact with the community’. The copingprocess appeared to be a phase extending from therecognition of their limitations to the development ofnew interests and capacities, via implementation ofcompensatory strategies.
Another important factor for the participants wassafeguarding or developing their family life. Whenthe individual was contributing to household choresand interacting with their spouse or children theyhad a positive self-image. Secondly, these relation-ships not only made them feel accepted as they were,with their limitations and capacities, but also openedthe door to contacts outside the immediate family,with friends and extended family. Thirdly, remarksmade by the TBI individuals also showed that familycaregivers played a key role in their long-termrehabilitation. Participants mentioned the constantcaregiving by their relatives after they came home,which included exercises, cognitive and socialstimulation and re-learning rules of social behaviour.The presence of family caregivers proved essentialfor the smooth running of day-to-day life and theyalso tended to compensate for the physical andcognitive impairments of the TBI individuals.
The findings of this study show that people’ssatisfaction with their social integration is closelyintertwined with having a social life and supportfrom family caregivers. These aspects are acknowl-edged facilitators of adjustment to a health problem[10, 28]. The degree of satisfaction with socialintegration is linked to the possibility of attaininga recognized social status: having a spouse, children,a home, etc. Many of the people interviewed felt thissituation had a positive value in that it provided anarea of ‘normal’ functioning in their life. Anotheraspect of family life favouring social integration is thesupport of relatives and friends [1]. This supportoperates in three registers. First, it helps to fill thegap in terms of the person’s post-rehabilitationneeds. The presence of family caregivers alsoprovides psychological support and a safety net forthe compensatory strategies adopted by the TBIindividuals. A third aspect is social life. Except forrelationships with their partner, immediate family ora close friend, these individuals are totally isolated.Although the presence of family caregivers partlyoffsets the limitations of long-term services availablefor persons who had suffered a TBI more than10 years previously, this situation has consequencesthat are by no means positive: witness the problems
TBI individuals have maintaining or forging satis-factory social relations [24].
For many of the participants (41%), the adjust-ment process is also strongly influenced by spiri-tuality, the individual’s view of life and the meaningthey ascribe to the event. Some became more awareof the beauty of life, the importance of living in themoment and respecting people’s differences. Othersgrew to savour the small pleasures of daily life or feltthey made better, more informed decisions: ‘I say tomyself, ‘‘Thank God I had an accident that made mesee the difference between what is good and whatisn’t’’’. For many, it became important to makesense of their head trauma experience: ‘He didn’twant to take me right away. I’m still alive. If I’vesurvived, it’s because I have something to do . . . butwhat is it?’
These findings confirm what [25] relates aboutpeople who were transformed by a chronic illnesssituation. The capacity to give meaning to an eventthat, at first sight, is meaningless, helps the personto adjust and achieve fulfilling social integration.Interestingly, and in line with the literature, thisfactor was more important for individuals who werehappy with their social integration than it was forthose who reported being only moderately satisfiedor not satisfied [26].
For some TBI participants (18%), the long-termfollow-up services they received were instrumentalin bringing about their social integration. Thesepeople found meeting with a health professional wasreassuring, because it gave them the sense of notbeing entirely on their own.
Barriers to social integration. The experience ofparticipants showed that being unable to return towork had a negative impact on their social integra-tion: ‘I just sit on the deck and watch. I see peopledriving to work’. Attempts were often unsuccessfulbecause of the physical and cognitive sequellae of theTBI. These failures diminished people’s satisfactionwith their social integration and lowered their self-esteem. Not being able to accomplish career planswas also viewed in terms of social norms, likecompleting one’s studies, having a fulfilling job andmoving on to the next stage in adult life: ‘Washingcars is for teens (. . .). At my age, most people arestarting to pay for their homes’. Many participantssaid that receiving compensation prevented themfrom realizing their plans, because it restricted theiroptions for paid employment and had a negativeimpact on their perception of their capacities andsocial integration. Fear that the compensation wouldend sometimes made people put aside their careersand limited their social integration.
In line with the literature, the results show thatan inability to return to work or a productiveoccupation is a major barrier to resuming
Perspectives of survivors of TBI and their caregivers 539
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y C
DL
-UC
San
ta C
ruz
on 1
0/25
/14
For
pers
onal
use
onl
y.
social roles that lead to satisfying social integration[1, 6, 10, 24, 27]. This desire is itself part ofa normative social register: people want to completetheir studies in order to move on to another stage oftheir adult lives, hold down a fulfilling job andeventually retire. Many of the people interviewedhad tried unsuccessfully to return to work and someof them nurtured plans to engage in a ‘productive’activity to fill their time. However, these planswere often regarded by the individuals themselvesand family caregivers as unworkable. More than10 years after their injury, many people still felt‘left out’, ‘isolated’ or ‘cut off from family andfriends’. Not having a paid job plunges peopledeeper into isolation and puts them at greater riskof poverty [1, 10].
Slightly less than a third of the participants spokeof having had a depressive episode ranging frommelancholia, depression, suicidal thoughts andacting-out. In many cases, depressive affectsappeared during hospitalization and rehabilitationand intensified after they went home. These episodesmay have been associated with difficulties in grievingfor their former identity, a romantic breakup orgeneral discontent. They tend to make peoplewithdrawn, thereby aggravating the effects of isola-tion and hampering their own social integration andthat of those around them. Sometimes, people felttheir depressive affects led to alcohol or substanceabuse. These problems were identified as more orless direct consequences of the TBI, in that theystemmed from the person’s difficulty resuming theirlife situation following the TBI. The problemsaffected people’s cognitive capacities and socialrelationships and the attitudes of those aroundthem and constituted a major stumbling block inthe person’s overall adjustment and satisfying socialintegration.
For some people, being socially isolated waslinked to a depressive experience and addiction.These factors are themselves acknowledged tobe major barriers to satisfying social integration[24, 27]. The results of this study show that theseexperiences often stem from problems coping withphysical, cognitive and behavioural changes and theresulting social isolation. Before long, a vicious circleforms, with exclusion triggering depressive affectsand addictive behaviours that make the person evenmore socially isolated. Sometimes this cycle isinterrupted when the person encounters a healthprofessional who gives them psychological support.However, the lack of resources characterizingservices 10 years ago (mentioned by mostparticipants) meant that many people had been leftstruggling to deal with their distress and had becometrapped in a situation in which satisfying socialintegration was beyond their reach.
Statements by the people interviewed showed thatTBI had a major impact on couples. Half of theparticipants went through divorce or separation afterthe TBI. People felt that these conflicts were causedby the attitude of the spouse, who had troublecoping with life with the TBI individual and this typeof problem often extended to all of the person’ssocial relations. Even years after the injury, somepeople continued to feel ‘left out’, ‘isolated’ or ‘cutoff from family and friends’. In a number of cases,this network had not been re-established, eventhough years had gone by and they were still isolated.
The responses of the people interviewed oftenreflected their problems sustaining and strengthen-ing their conjugal, parental, family and socialrelationships. TBI has a major impact ona person’s relationships with their immediate circle[24]. The collapse of the social network is a lastingphenomenon and people find themselves cut-off[28]. The person’s family roles are often the onlyones they have left that enable them to share a sociallife without feeling marginalized or excluded.A separation or divorce following the brain injuryseemed to be partly due to lack of information andeducation for the family caregivers about thelong-term consequences of the TBI and the rolechanges it entails [29]. As a result, family caregiversfound it hard to provide support and felt daily lifewas a burden.
TBI sequellae constituted an obstacle to fulfillingsocial integration for slightly less than half ofthe people interviewed. Physical and cognitiveimpairments as well as emotional sequellae placelimits on the activities people are able to undertake.Physical sequellae in particular tend to stigmatizepeople, making them feel embarrassed in front ofother people, both within their own circle and withsociety in general. Cognitive sequellae such asfatigability and attention problems make socialexchanges such as a conversation between friendsdifficult and emotional sequellae may prevent socialrelationships from developing or enduring. In somecases, these sequellae lead to an overwhelming fearthat these problems will only get worse and preventpeople from participating. The ageing process is alsoa worrying factor.
According to the results of this study, the mostimportant factors are an individual’s intrinsic capa-city to adapt and support from loved ones. Braininjury disrupts the internal equilibrium of the personand their environment and tests their capacity toadapt. Research and clinical experience show thatthe person has to work through multiple grievingprocesses and tap into their own resources in orderto cope [10, 11, 24, 27–29]. The remarks of theinterviewees revealed that their capacity to adjust tothe TBI and to their physical and cognitive deficits
540 H. Lefebvre et al.
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y C
DL
-UC
San
ta C
ruz
on 1
0/25
/14
For
pers
onal
use
onl
y.
and the behavioural sequellae, as well as to thedisruption in their living environment, were key toachieving satisfying social integration. Ascribinga positive meaning to the event seems to be a partof this adjustment.
Impact on family caregivers
The results show that support from relatives playsa key role in the quality of social integration ofpersons who have suffered a TBI. However, thissupport role is an exacting one for family caregiversand makes daily life difficult. One third of therelatives found that the TBI affected their profes-sional life or main occupation. When the TBIindividual came home, family caregivers had toreorganize their time. They had to restructure theirprofessional lives, taking leave from or giving upa fulfilling job in order to look after the person. Thissometimes made it difficult or even impossible forthem to return to their former positions: ‘I don’tknow if I’m going to continue to be able to do both[work and take care of the TBI person]’.
The relatives also reported that the TBI pro-foundly affected family relations. Sometimes theimpact was positive (stronger bonds, better commu-nication), but usually the family dynamic suffered.Nearly half of the relatives indicated that commu-nication problems and certain behavioural sequellae,especially aggressiveness and impulsiveness, werehard to live with, making the already demandingdaily routine even more stressful. The experience ofa number of relatives shows that looking after theperson who has suffered a TBI requires an enormousamount of energy on a daily basis. Everyone in theperson’s circle has to be mobilized. Relativesreported that they undertook all daily and domestictasks for the person and had to stimulate the personand give them the specific care required by theirmedical condition. This included cognitive(‘memory games’) or language stimulation, naturo-pathic treatments and so on. Most of the familycaregivers felt that they were the ones continuing theperson’s rehabilitation: ‘With head traumas, youcan’t talk about of acquisitions. You need to think interms of years of daily interventions. You need tobelieve [in the process], and it takes a lot of time’.However, this aspect was not entirely negative: forsome it was also a learning experience.
Having to devote so much time and effort to theperson meant that relations with the wider circlewere affected. Participants mentioned that since theaccident, they had not engaged in leisure activities asoften as before, nor were the activities of the samequality; for many people, this was still the case even10 years post-injury. Moreover, relatives found thatthe TBI sequellae constituted barriers to their
maintaining social relations. The person’s aggres-siveness and attention and concentration problemswere difficult for other people to understand anddeal with. This had an irreversible effect on socialinteraction, with the breakdown in these relation-ships often undermining the quality of the family’ssocial life and leisure activities.
Brain injury entails many long-term consequencesfor family caregivers. An important point not to beoverlooked was the emotional burden still borne bythose close to the individual, 10 years afterwards.They spoke of physical and emotional exhaustion,heavier responsibilities and a deterioration of thefamily’s financial situation [11, 29]. More than10 years later, the injury had been and remaineda disruptive force in their lives. The person who hadsuffered a TBI continued to be dependent on them.This situation intensifies family stress and exhaustsfamily caregivers. People were constantly worryingabout the TBI individual and the future. In somecases, the injury had led to a whole range ofproblems, including the break-up of the family.There were family members whose marriages hadbroken up because their spouse had been tooinvolved with the injured person. Many said thatthey themselves bore the brunt of the burden.
Family caregivers reported that all these difficul-ties were aggravated by the lack of resources forlong-term follow-up. TBI creates a tough situationfor families and people require long-term psycholo-gical support. Relatives felt they had been left tocope alone and criticized the lack of availableresources. A few people said that after the rehabilita-tion phase, they had not worried about the TBIindividual, who seemed to have recovered. However,in some cases, the situation degenerated; they hadnot been warned of potential problems, so foundthemselves with no resources for coping with them,months or years afterwards. In line with theliterature, these results show that the needs offamilies should be addressed with long-term helpand professional support [6, 29].
Limitations of study
In view of the small sample size, these results cannotbe regarded as representative of all TBI victims.Moreover, because the participants in the originalTRAUMA Project sample were aged at least 16 and11–14 years had elapsed since they were recruited,the age of the participants in this sample ranged from31–71 (a mean age of 42.4). The results thereforeapply to an older population and may not berepresentative of a younger cohort. In addition, theindividuals interviewed for this study had sustaineda moderate or severe TBI, so the findings may not betransferable to the mild TBI population.
Perspectives of survivors of TBI and their caregivers 541
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y C
DL
-UC
San
ta C
ruz
on 1
0/25
/14
For
pers
onal
use
onl
y.
In view of the retrospective nature of the study,the results may have been affected by recall bias.As regards use of services, for example, someparticipants may have had trouble rememberingpast events. People with moderate or severeTBI may experience some neuropsychologicaldysfunction, which affects their ability to accuratelyassess their situation or behaviour. They may alsohave had trouble recalling exactly what happened ina specific situation, because the passage of time andother experiences in the intervening years may havealtered their original perception. However, theresearchers validated the data by collecting informa-tion from relatives and checking records on studyparticipants; these biases were therefore limited.
Conclusion: Working towards
satisfying integration
For individuals who had suffered a TBI and tookpart in this study, social integration seems to be anongoing process. Most people said they were ‘doingOK’ now and had reached this stage over a period ofmany years following the injury. Many participantssaid that they had only ‘gotten over it’ 5 yearspost-injury with the help of a health professional.However, satisfying social integration was notachieved by all of the TBI participants. More than10 years later, most were still unhappy with theirsituation. A long-term impact was also found on thefamily caregivers. It seems that time is an importantfactor since difficulties appear many years post-trauma. Moreover, as proposed by the conceptualframeworks used in this study, results show that therealization of the activities of the everyday life andthe social roles depend largely on the support of theenvironment, as well as the personal characteristicsof individuals.
Determinants supporting satisfying social integra-tion more than 10 years post-injury were tied tovarious aspects in the lives of persons who hadsuffered a TBI. According to the various barriersdescribed in this article, resources supporting theirsocial integration (including social and cognitiverehabilitation, transportation services, defending therights of TBI individuals and psychosocial supportfor the person and family caregivers) are essential.In most people’s experience, family caregivers filledthe gap in services after they came home. Withrespect to these results, the literature stresses that theindividual’s inherent capacity for adjustment has tobe supported with seamless long-term care [11, 24].Early follow-up by a multidisciplinary teamaddressing the TBI client’s return to work andsocial roles right from the acute care phase wouldenable rehabilitation interventions to be more
effectively oriented. Here one should add that thecare team should evaluate the professional and socialactivities engaged in by the person prior to theaccident in the context of the person’s community,so that rehabilitation is more accurately tailored toeach individual’s needs.
Some studies have demonstrated the longitudinalimpacts of the TBI on the person and those closeto them [3, 6, 24, 28]. However, few havedescribed a head trauma as experienced by thefamily rather than just the individual. This studyheard from people who suffered a head trauma,but it has also given voice to the other peoplewhose lives have been affected by this disruptiveexperience. It has shed light on the importance ofproviding long-term support to people with TBIsas well as to the family caregivers and hasunderscored the lack of post-rehabilitationresources for both groups.
Various recommendations arise from the results ofthis study. Most important of them are: (1) to ensuremore extensive development of long-term follow-upservices by a multidisciplinary team in order to helpTBI individuals to cope with problems that evolveover time; (2) to develop support services for familycaregivers that are delivered by a multidisciplinaryteam in order to ensure that relatives receivepsychosocial support in dealing with this difficultand demanding experience; (3) to develop a researchprogramme that will catalogue post-rehabilitationinterventions in the public and community-basednetwork; and (4) to study the workings of the healthcontinuum while involving professionals in howpost-rehabilitation problems are addressed.
Acknowledgements
This study was funded by Quebec’s RehabilitationResearch Network, Quebec’s Ministere de la Santeet des services sociaux and the Societe del’Assurance Automobile du Quebec (REPAR,MSSS, SAAQ: 2002–2004) as well as the Inter-network Research Group on Family andEnvironmental Adjustment (GIRAFE: 2004).
Research team
Helene Lefebvre, PhD, Marie Vanier, PhD, BonnieSwaine, PhD, Elisabeth Dutil, MSc, Michel Pepin,PhD, Patrick Fougeyrollas, PhD, ConstantRainville, PhD, Mary Ann McColl, PhD, ClaireDumont, PhD, Diane Pelchat, PhD, BernardMichallet, PhD, Isabelle Gelinas, PhD, SuzanneDenis, MSc, Marie Josee Levert, PhD (cand.).
542 H. Lefebvre et al.
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y C
DL
-UC
San
ta C
ruz
on 1
0/25
/14
For
pers
onal
use
onl
y.
Declaration of interest: The authors report noconflicts of interest. The authors alone are respon-sible for the content and writing of the paper.
References
1. Gadoury M. Cadre de reference clinique pour l’elaborationde programmes de readaptation pour la clientele qui a subi untraumatisme cranio-cerebral. Volet adulte. 2nd ed. Quebec:Societe de l’Assurance Automobile du Quebec, 1998–1999,Direction des politiques et programmes pour les accidentes,Service de la programmation en readaptation; 1999.
2. Angus DE, Cloutier E, Albert T, Chenard D, Shariatmadar A.The economic burden of unintentional injury in Canada.Research Report. Toronto: SmartRisk Foundation; 1999.
3. Wagner AK, Sasser HC, Hammond FM, Wiercisiewski D,Alexander J. Intentional traumatic brain injury:Epidemiology, risk, factor, and associations with injuryseverity and mortality. Journal of Trauma 2000;49:404–410.
4. Carrier S, Fortin D. Evolution et renouvellement desconceptions de la readaptation en deficience intellectuelleau Quebec. Revue Canadienne de Psychoeducation etD’orientation 2003;31:339–362.
5. McColl MA, Davies D, Carlson P, Johnston J, Minnes P.The community integration measure: Development andpreliminary validation. Archives of Physical Medicine andRehabilitation 2001;82:429–434.
6. Minnes P, Buell K, Nolte ML, McColl MA, Carlson P,Johnson J. Defining community integration of persons withbrain injuries as acculturation: A Canadian perspective.Neurorehabilitation 2001;16:3–10.
7. Nolte ML. Disablement, context, and quality of life afterbrain injury: Measuring what matters. Dissertation AbstractsInternational: Section B: The Sciences and Engineering2000;60(9-B), 4900, E-U: University Microfilms International.
8. McCabe P, Lippert C, Weiser M, Hilditch M, Hartridge C,Villamere J. for the ERABI Group. Community reintegrationfollowing acquired brain injury. Brain Injury 2007;21:231–257.
9. Reistetter TA, Abreu BC. Appraising evidence on commu-nity integration following brain injury: A systematic review.Occupational Therapy International 2005;12:196–217.
10. Dumont C. L’identification des facteurs qui vont favoriser laparticipation sociale des adultes presentant des sequelles detraumatisme cranio-cerebral. Unpublished doctoral thesis.Montreal: Universite de Montreal; 2003.
11. Lefebvre H, Pelchat D, Swaine B, Gelinas I, Levert MJ. Theexperiences of individuals with a traumatic brain injury,families, physicians and health professionals regarding careprovided throughout the continuum. Brain Injury 2005;19:585–597.
12. Kendall E, Buys N, Larner J. Community-based servicedelivery in rehabilitation: The promise and the paradox.Disability & Rehabilitation 2000;22:435–445.
13. Fawcett G, Ciceri C, Tsoukalas S, Gibson-Kierstead A.Mesures et services de soutien pour les adultes et les enfants(de 5 a 14 ans) ayant une deficience au Canada: Une analysedes donnees portant sur les besoins et les lacunes. Ottawa:Conseil Canadien de developpement social; 2004.
14. MSSS. Pour une veritable participation a la vie de lacommunaute. Orientations ministerielles en deficience phy-sique 2004–2009. Quebec: MSSS; 2004.
15. OPHQ. Le Quebec et l’integration sociale des personneshandicapees. Orientations et voies de solution pour l’avenir.Montreal: OPHQ; 1999.
16. Fougeyrollas P. Le processus de production du handicap:L’experience Quebecoise. In: De Riedmatten R, editor.Comment repenser le handicap. Geneve: Editions Medecinet hygiene; 2001. pp 101–123.
17. Vanier M, Lambert J, Kemp F, Dutil E. Systeme d’evaluationglobale des consequences d’un traumatisme cranio-encepha-lique. Montreal: Montreal Rehabilitation Institute; 1992.
18. Kaufman SR. In-depth interviewing. In: Gubrium JF, SankarA, editors. Qualitative methods in aging research. ThousandOaks: Sage Publications; 1994. pp 123–136.
19. Habermas J. Theorie de l’agir communicationnel. Tome 1.Paris: Fayard; 1987. p 448.
20. Poupart J. L’entretien qualitatif: Considerations epistemolo-giques, theoriques et methodologiques. In: Poupart J,Deslauriers JP, Groulx LH, Lapperriere A, Mayer R, editors.La recherche qualitative. Enjeux epistemologiques etmethodologiques. Boucherville: Gaetan Morin; 1997.pp 173–210.
21. Paterson BL, Thorne SE, Canam C, Jillings C. Meta-study ofqualitative health research: A practical guide to meta-analysisand meta-synthesis. Thousand Oaks, CA: Sage; 2001.
22. Guba EG, Lincoln YS. Fourth generation evaluation.Newbury Park, CA: Sage; 1989.
23. Lapierriere A. La theorisation ancree (grounded theory):Demarche analytique et comparaison avec d’autres approchesapparentees. In: Poupart J, Deslauriers JP, Groulx LH,Lapperriere A, Mayer R, editors. La recherche qualitative.Enjeux epistemologiques et methodologiques. Boucherville:Gaetan Morin; 1997. pp 309–340.
24. Dijkers MP. Quality of life after traumatic brain injury:A review of research approaches and findings. Archives ofPhysical Medicine and Rehabilitation 2004;85:s21–s35.
25. Miczo N. Beyond the fetishism of words: Considerations onthe use of the interview to gather chronic illness narratives.Qualitative Health Research 2003;13:469–490.
26. McColl MA, Bichenbach J, Johnston J, Schumacker M,Smith M, Yelland B. Changes, in spiritual beliefs aftertraumatic disability. Archives of Physical Medicine andRehabilitation 2000;81:817–823.
27. Durgin CJ. Increasing community participation afterbrain injury: Strategies for identifying and reducing therisks. Journal of Head Trauma Rehabilitation 2000;15:1195–1207.
28. Colantonio A, Ratcliff G, Chase S, Kelsey S, Escobar M,Vernich L. Long term outcomes after moderate to severetraumatic brain injury. Disability & Rehabilitation 2004;26:253–261.
29. Ergh TC, Hanks RA, Rapport LJ, Coleman RD. Socialsupport moderates caregiver satisfaction with life followingTBI. Journal of Clinical and Experimental Neuropsychology2003;25:90–108.
30. Lefebvre H, Vanier M, Dutil E, Pelchat D, Swaine B, GelinasI, Fougeyrollas P, Pepin M, Rainville C, Michallet B, et al.La participation sociale a long terme des personnes ayant subiun TCC 10 ans post-traumatisme, Research Report,Montreal: ERIFAM; 2004.
31. Fougeyrollas P, Noreau L. Guide de l’utilisateur. Instrumentde mesure des habitudes de vie (MHAVIE 2.1) et instrumentde mesure de las qualite de l’environment (MQE). Reseauinternational CIDIH 1997;9(1):6–19.
Perspectives of survivors of TBI and their caregivers 543
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y C
DL
-UC
San
ta C
ruz
on 1
0/25
/14
For
pers
onal
use
onl
y.
