Healthcare Consumers’ Need for Brain-injury Services: The ...€¦ · Healthcare Consumers’...

Healthcare Consumers’ Need forBrain-injury Services: The CriticalImportance of Timing in PlanningFuture Services

Anna O’Callaghan,1 Lindy McAllister,2 and Linda Wilson3

1 University of Queensland, St. Lucia, Queensland, Australia2 Assoc. Prof. University of Sydney, Sydney, Australia3 Charles Sturt University, Albury, Australia

Developing an awareness of the preferences of healthcare consumers is essen-tial in determining the ‘reality’ of service provision, in planning the provision ofbrain-injury services and in service evaluation. Consumers should be given the op-portunity to express satisfaction or dissatisfaction with the services they receive,offering their perceptions of barriers to service access, which could be removedonce known. This article presents narratives of the healthcare journeys of threeadults with a moderate to severe brain injury. The experiences of these participantswere elicited through in-depth interviews. The aim of this article is to convey howthe needs and experiences of adults with brain injury change throughout time,affecting their ability to access care over time. Previous research by the authorsof this paper identified five factors that affect consumers’ experiences of care:acceptance and readiness, support, advocacy, the right service at the right timeand mismatched expectations. The fluidity and interaction of these factors throughtime is demonstrated in this article as facilitating and impeding access to services.The implications for clinicians in considering these factors when planning servicesfor adults with moderate to severe brain injuries are explored.

Keywords: rehabilitation, consumers’ preferences, best practice, timing

IntroductionResearchers worldwide have identified that par-ticipation in rehabilitation is one of the key vari-ables shown to improve an adult’s prognosisfollowing brain injury (Cicerone, Mott, Azulay,& Friel, 2004; Goranson, Graves, Allison, & LaFreniere, 2003; Malec, 2001; Seale et al., 2002). In-tensive rehabilitation following acute medical carehas been shown to affect positively community in-tegration and return to work. It has been acknowl-edged that brain injury rehabilitation requires theclose collaboration of many neurological rehabil-itation specialists, as an adult’s physical, cogni-tive and behavioural sequelae cross professional

Address for correspondence: Dr Anna O’Callaghan, Division of Speech Pathology, School of Health & RehabilitationSciences, The University of Queensland, St. Lucia, Queensland 4072, Australia. E-mail: [email protected]

boundaries and require a unified, integrated ap-proach to treatment that extends beyond the reha-bilitation clinic into the person’s home and com-munity (Brookshire, 2003).

There are many published national and inter-national clinical care guidelines that stipulate ap-propriate levels of service provision throughoutthe continuum of care of adults with brain injury(Accident Rehabilitation and Compensation Insur-ance Corporation & National Health Committee,1998; British Society of Rehabilitation Medicine& Royal College of Physicians, 2003; Turner-Stokes, Disler, Nair, & Wade, 2005; Youse, Le,Cannizzaro, & Coelho, 2002). According to these

BRAIN IMPAIRMENT VOLUME 13 NUMBER 3 DECEMBER pp. 316–332 c© The Authors 2013 doi: 10.1017/BrImp.2012.26316

IMPORTANCE OF TIMING WHEN PLANNING SERVICES

Acute care stage

Residential rehabilitation stage

Non-residential rehabilitation stage

Longer-term community support

FIGURE 1

Model of stages of rehabilitation for adults with brain injury (adapted from Turner-Strokes, L. (2001). Head in-jury rehabilitation – How should it be provided? In Head Injury rehabilitation: A Parliamentary Select Committee(pp. 24–48). London: HMSO.

guidelines, rehabilitation following a brain injuryis typically provided in four stages (see Figure 1).

The implementation of these guidelines in therehabilitation of adults with brain injury helps tostandardise service delivery by ensuring the devel-opment of equitable and efficient services throughthe implementation of best practice. However, itis imperative to recognise that the provision of ahealth service does not guarantee that those whoneed the service will use it (Humphreys, Mathews-Cowey, & Weinand, 1997). In order for a healthservice to be utilised, consumer preferences mustbe considered. Advocacy and regulatory agencies(e.g., National Rural Health Policy Forum, 1999),along with researchers, have acknowledged the vi-tal role healthcare consumers play in the improve-ment of health services in Australia. Consumers’

preferences for, and experiences of, the deliveryof health services have been explored in the liter-ature (Blight, 1991; Brown, 1991; Humphreys &Rolley, 1993; Keleher, 1999). Factors underpin-ning consumer preferences and experiences ofmedical services have been identified (Humphreyset al., 1997; Rankin, Newell, Sanson-Fisher, & Gir-gus, 2000). They include availability (i.e., the ex-istence of services relevant to consumers’ needs),accessibility (measured in terms of distance, time,cost and availability of transport), accommodation(i.e., how the service is organised to accept con-sumers, measured in ways such as waiting time),affordability (in terms of economic access to ser-vices) and acceptability (in terms of consumers’attitudes towards a particular service or health pro-fessional) (Penchansky & William Thomas, 1981).

317

ANNA O’CALLAGHAN ET AL.

Canadian researchers LeFebvre, Pelchat,Swaine, Gelinas, and Levert (2005) usedsemi-structured interviews to investigate the ex-periences of eight individuals who had sustained abrain injury, their families (n = 8) and the physi-cians (n = 9) and health professionals (n = 22)involved in their care. This study reviewed theexperiences of consumers from acute care man-agement through to their subsequent rehabilitation.LeFebvre et al. (2005) found that the majority ofparticipants were satisfied with the availability ofservices during the acute care phase. However, sat-isfaction declined once the adults with brain in-jury and their families returned home. The adultswith brain injury and their families criticised thelack of resources available to them after dischargefrom residential care. They voiced their belief thatthe lack of human resources available resulted inexhaustion among professionals, which compro-mised the quality of care for the recipients of braininjury services. The opinions of physicians andhealth professionals mirrored patients’ and fami-lies’ comments in this study.

The findings of Muus, Cogan, Offutt, andMedalen (2006) were consistent with those ofLeFebvre et al. (2005). Muus et al. surveyed 117North Dakotans with brain injury to identify themajor barriers to accessing health and social ser-vices from the perspectives of healthcare con-sumers. They found that the commonly cited barri-ers to access and service utilisation were shortageof brain-injury advocates, inadequate knowledgeof available services, no centralised source of in-formation, inadequate financial resources and lackof individualisation of brain-injury programmes.Although they stated that the majority of barriersexperienced were due to poor advocacy efforts anda lack of information, they also reported that manyof the cited barriers could be lessened or alleviatedthrough increased effort at the state level to addressthe needs of people with brain injury.

Another survey of brain-injury consumers’preferences for, experiences of and satisfactionwith services was conducted by the Medical Re-search Institute of New Zealand (McNaughton,2004). The aim of this and a second related sur-vey of brain-injury service providers was to allowcomparison of international best practice as de-scribed in brain-injury guidelines with brain-injuryservice provision in New Zealand. The responsesof 420 adults with brain injury (response rate of21%) were analysed as part of the New Zealandstudy. The results indicated that a large number ofconsumers (40%) were not satisfied with the ser-vices that were provided. Gaps identified in serviceprovision included: a perceived lack of knowledgeof brain injury among service providers, which

affected the way adults with brain injury weretreated; difficulty finding available services, whichwere often self-sourced rather than offered or sug-gested by service providers; fragmented and/orpoorly coordinated services; poor access to ser-vices, which appeared to be compounded by de-gree of rurality; preference for perceived specialistservices even if required to travel; variable case-manager services with high staff turnover; and theperception that the New Zealand health system wasgeared toward the resolution of physical injuries,not remediation of cognitive, emotional or lastingimpairments commonly experienced by those withbrain injury.

O’Callaghan, McAllister, and Wilson (2009,2010, 2011, 2012) analysed 386 surveys and 17 in-depth interviews to identify the experiences of Vic-torian healthcare consumers when accessing careafter an acute brain injury. This study employedmixed methods and reflected on the experiences of202 adults with a moderate to severe brain injuryand 184 significant others. The results from surveysindicated that very few participants (20%) reportedreceiving health services in line with internationalclinical care guidelines. Participants reported sig-nificant gaps in service provision, including lackof specialist services, limited involvement in guid-ing their care, poor monitoring following dischargefrom formal services, limited involvement in tran-sition planning, variations in access to care accord-ing to funding, and poor access to support uponcommunity integration after discharge from for-mal services. Interestingly though, those with braininjury and their significant others were largely sat-isfied with the services received (see O’Callaghanet al., 2010, 2011 for more detail).

In the interviews completed with adults withbrain injury and their significant others, five fac-tors were identified which influenced consumers’ability to access services over time. These factorsincluded: (a) their acceptance of head injury andreadiness to engage in therapy; (b) their ability toaccess constant support; (c) their and others’ rolesin advocating for services; (d) their ability to ac-cess the right service at the right time; and (e) thedegree of match between their and others’ expecta-tions with regard to services provided, treatmentsrecommended, staff specialty and expected out-come (O’Callaghan et al., 2012). These factors atvarious points in time either facilitated or impededthe ability of participants with brain injuries to ac-cess services. Demonstrating the fluidity and inter-action of these factors through time, as illustratedthrough three qualitative case narratives, is the aimof this article. It discusses implications for clini-cians in considering the role that these factors playin access to consumer services, so that clinicians

318


might assist in ensuring judicious provision of re-habilitation services to adults following moderateto severe traumatic brain injury (TBI).

MethodsThis study was conducted with the approval ofthe Charles Sturt University Ethics in Human Re-search Committee (protocol: 2007/071), the RoyalMelbourne Hospital Human Research Ethics Com-mittee (protocol: 2007/175) and the Alfred Hospi-tals Research and Ethics Unit (approval number:170/07). The methodology used in the larger study(O’Callaghan et al., 2009, 2010, 2011, 2012) fromwhich these three case narratives are derived isdescribed, followed by description of the develop-ment of the case narratives presented in this paper.

Qualitative ParadigmAn interpretivist framework (Denzin & Lincoln,2005) was used to guide data collection and anal-ysis in this study. Interpretivism is based on thepremise that people continually and actively makesense of their life experiences within a culturalframework of socially constructed, negotiated andshared meanings (Hughes, 2003). So, for example,the way that adults with TBI and their significantothers interpret their experiences of care followingTBI is influenced by negotiated and shared under-standings between them and the health profession-als that provide their care. These understandings,in turn, have been established in the context ofthe cultural and societal expectations of serviceprovision following illness. In interpretivism, re-searchers attempt to interpret why participants actin certain ways, by attempting to see things throughtheir eyes (Grbich, 1999; Schwandt, 2000).

Data CollectionA number of different types of interviews can beused in qualitative data collection. The form of in-terviewing taken in the present research involvedan unstructured approach (Minichiello, Madison,Hays, Courtney, & St John, 1999). By taking anunstructured approach, the researchers were ableto change and/or adapt questions to meet the vary-ing experiences and impairments (i.e., cognitive–communication) of participants. The interviews inthis research were conversations between the firstauthor and the participants, focusing on partici-pants’ perceptions of themselves, their life and ex-periences throughout the healthcare journey fol-lowing a TBI.

Participants directed the interviews in this re-search with only minor input from the researcher.The researcher did have certain questions that

formed the basis of a broad interview guide. How-ever, when asking these questions, the researcherfollowed a conversational style of questioningrather than an interrogative style. The interviewguide was developed around a list of topics of in-terest to the researchers, generated from the pre-liminary analysis of the questionnaires. The topicsof interest were not formulated into fixed questionswith specific ordering, but were used to guide theinterview and to probe for further information. Theuse of the interview guide was flexible and open tochange throughout the interviewing process.

Before interviewing participants, the first au-thor provided participants with an informationsheet and consent form detailing the aims of inter-viewing, its benefits and risks (such as fatigue andsurfacing old emotions), how confidentiality wouldbe assured and the time estimated to be needed tocomplete the interview. The researchers also trav-elled to a place of each participant’s choosing (i.e.,home or a local cafe) to conduct the interviews.The time taken to complete interviews varied from45 minutes to 21/2 hours, depending on participants’levels of engagement and fatigue. Interviews wererecorded digitally, with participants’ permission.Interviews were then transcribed for later analy-sis. Fourteen people with TBI and nine significantothers participated in the interviews.

Data AnalysisA thematic analysis, within a phenomenologicalapproach, was used to analyse the data from theinterviews. According to Morse and Field (1995),phenomenology seeks to understand the lived ex-periences of individuals and their intentions withintheir ‘life world’. Within this approach, the re-searchers asked participants what it was like toaccess health care following a TBI. Phenomenol-ogy was the method of choice for this research as itsought to elicit, understand and make sense of par-ticipants’ experiences. There are four main existen-tials that guide phenomenological reflection: livedspace (spatiality), lived body (corporeality), livedtime (temporality) and lived human relation (rela-tionality or communality) (Morse & Field, 1995).An awareness of these four existential premiseswas important in guiding the researchers’ lateranalysis of participants’ experiences as revealed inthe interview transcripts. One critical aspect of phe-nomenology is the need for the researchers to sus-pend their own views or preconceived ideas abouta phenomenon and to seek to understand it throughthe eyes of participants. The aim of this type of in-quiry is to show that although the phenomenonunder investigation is experienced uniquely byeach individual, there exists underlying unifying

319


meaning of the experience that is essential and in-variant for all people (Hickson, 2008).

Procedures for ensuring rigour in qualitativeresearch were followed. For example, the researchfindings are grounded in the data, with thick de-scription using participant quotes illustrating find-ings. In addition, participant validation was usedto ensure that our interpretations of the data asresearchers were consistent with the feelings andexperiences of participants with regard to the con-tinuum of care they experienced following theirTBI. All interview summaries were returned to theresearchers and all participants in this study agreedthat the summary was an accurate synopsis of theissues they had spoken about in their interview.

The data generated from the interviews inthis study were analysed in two ways. First, tra-ditional thematic analysis involving coding andcategorising into higher-order themes was under-taken, and saturation of themes was achieved inthe 17 interviews. The five themes arising fromthis analysis have been reported previously byour group (O’Callaghan et al., 2012). Second,three transcripts illustrating very different health-care journeys were selected and analysed usingnarrative analysis approaches (Josselson, 2006;Sandelowski, 1991). In using this approach to dataanalysis, the richly detailed expositions of the par-ticipants’ healthcare journey narratives were re-tained. These three narratives demonstrate the crit-ical importance of timing in planning for futureservices after discharge for individuals with braininjury. The three stories selected for presentation inthis paper were selected using maximum variationsampling. The three participants selected in thisstudy varied on the basis of their degree of ruralityaccording to the Accessibility Remoteness Index ofAustralia (i.e., highly accessible, accessible, mod-erately accessible, remote and very remote) (Com-monwealth Department of Health and Aged Care,2001) as well as on the basis of the level and typeof healthcare funding allocated to finance their re-habilitation (i.e., public, private or compensablefunding). As a result, the narratives document dif-fering experiences, although with common under-lying themes. The narratives presented in this ar-ticle are made up of participant quotes linked byresearcher summaries of what was reported in theinterviews. As much as possible, participant quotesare used in order to convey their experiences au-thentically.

The three participants’ healthcare journeysconveyed in this article are visually represented ina model that maps access to services in comparisonto the four phases of rehabilitation recommendedin clinical care guidelines (Accident Rehabilitationand Compensation Insurance Corporation & Na-

tional Health Committee, 1998; British Society ofRehabilitation Medicine & Royal College of Physi-cians, 2003); that is, acute care, residential rehabil-itation, non-residential rehabilitation and longer-term community support.

ParticipantsIn the larger study from which the data in thispaper are drawn (O’Callaghan et al., 2009, 2010,2011, 2012), 23 people with brain injury and theirsignificant others were interviewed. This paperpresents three narratives from the larger data pool,those of Bettina, Melinda and Oscar. To maintainthe anonymity of the participants, all names, re-habilitation hospitals and places of residence arepseudonyms. Brief biographical sketches of theparticipants are presented here. The three partic-ipants had important differences which were ini-tially thought to have affected the services theyreceived (i.e., they lived in different locations andwere allocated different funding models to coverthe costs associated with their treatment) (seeTable 1). They also represent the range of health-care journeys related by all 23 participants in thelarger data set.

Bettina. Bettina was born overseas. She moved toAustralia with her daughter when she married herfirst husband more than 30 years ago. This rela-tionship has since broken down. Bettina holds apostgraduate degree in psychology and worked asa lecturer at an institute of higher education be-fore sustaining her TBI 5 years ago. Nine yearsago, Bettina’s mother died. Ten weeks after thather daughter, Sharyn, committed suicide. In be-tween her mother and daughter dying, Bettina washospitalised for neck surgery and suffered a mildstroke. Bettina has a history of depression. Bet-tina’s current partner, Phillip, has children andgrandchildren from a previous marriage, who donot speak to Bettina. Bettina and Phillip are cur-rently self-employed. They work as stall holdersselling leatherwork, dolls and collectables, whiletravelling between local markets. They also con-duct paper runs. Bettina lives in an inner regionalcentre and accessed health services following herTBI as a public patient.

Melinda. Melinda emigrated from Eastern Europewhen she married her first husband. She had adaughter during this marriage who until recentlylived at home with her and her current husband,Drew, and their two other children. Melinda was37 years old at the time of the interview and isa trained accountant. However, she stopped work-ing following an unsuccessful return-to-work pro-gramme implemented 1 year after the TBI. At the

320


TABLE 1Participants

Funding ARIA rating of Services accessed throughout continuum of care

Participant model home town Acute Inpt Outpt Monitoring

Bettina Public Highly accessible Yes No Yes NoMelinda Public Highly accessible Yes Yes Yes YesOscar Private Highly accessible Yes Yes Yes No

ARIA, Accessibility Remoteness Index of Australia; Inpt = inpatient rehabilitation; Outpt = outpatient rehabilitation.

time of her interview Melinda was a stay-at-homemother and housekeeper. Melinda married her sec-ond husband, Drew, soon after she sustained herbrain injury. Melinda reported that her marriage isstrong. She stated she was lucky to have an intelli-gent husband who was able to support her and herfamily following her brain injury. Melinda lived inan outer suburb of a metropolitan centre at the timeof interview. She accessed mainly public healthservices following her brain injury. However, shealso reported paying privately for specialist braininjury services.

Oscar. Oscar sustained his brain injury after be-ing assaulted following a night out in a metropoli-tan centre with his friends. Before sustaining hisbrain injury, Oscar worked as a senior project man-ager in a national company. He resigned from thisrole following an unsuccessful return-to-work pro-gramme. At the time of his interview, Oscar wasemployed as a website project officer within a char-ity organisation. Oscar completed an undergradu-ate degree in information technology and telecom-munications. Oscar has supportive parents. He was28 years old when he was interviewed. At the timeof his interview Oscar lived in a metropolitan cen-tre. He accessed private and public health servicesfollowing his brain injury. Oscar had private healthinsurance and received a lump sum payout from theVictims of Crime Tribunal to help fund his care.

ResultsThe data in this paper are presented as three narra-tives. An analysis of the variation of person-relatedfactors (i.e., acceptance and readiness, support,advocacy, right service at the right time and mis-matched expectations) over time, facilitating andimpeding access to the different stages of rehabili-tation, is provided in relation to each narrative, andthese factors are mapped according to the stages ofrehabilitation model presented in Figure 2. In this

way the interaction of factors determining accessto services across time is demonstrated.

Bettina’s JourneyIt was a Saturday night in July, when Bettina leantover her second floor balcony to inspect the cur-tains her partner Phillip had just hung, when shefell.

I ran straight out, because I was hanging the curtainsand Bettina was outside. The next minute I saw hergo over the balcony, I went to grab her but missed. Ijust flew down [the] stairs and virtually saw that shewas alive. I got on the phone because the neighbourswere home and they’re nurses. (Phillip)

Bettina’s neighbours worked for 40 minutes to re-suscitate her while they waited for an ambulanceto arrive. Bettina was flown to a metropolitan acutespecialist hospital for her acute care. She remainedthere for approximately 20 days before returninghome. Phillip commuted daily from the rural cen-tre where he lived to the metropolitan centre to visitBettina while she was in hospital. Phillip reportedreceiving no accommodation or travel support dur-ing this time. However, he reported that he neededto return home daily to feed the animals and work.

I’d leave down there after tea, come home, look afterour animals, go to bed, get up, do our two mail runs,and then go straight down. It took 3 hours to getthere depending on the traffic. (Phillip)

Bettina remembered receiving quit smokingbrochures during her acute stay. However, neitherPhillip nor Bettina remembered receiving any in-formation regarding her TBI and the symptomsthat were to follow.

Probably the only regret or criticism I’ve got of thehospital is that I wish someone had sat down andexplained to me the frustration and rage that I wouldfeel. It’s nothing for me to throw half a dozen glassesacross the room. (Bettina)

321


FIGURE 2

Model of stages of rehabilitation (adapted from Turner-Strokes, L. (2001). Head injury rehabilitation – How should itbe provided? In Head Injury rehabilitation: A Parliamentary Select Committee (pp. 24–48). London: HMSO.

Bettina reported she received mainly surgical carewhile at the acute metropolitan hospital (i.e., fa-cial surgery to fix bone fractures) and Bettina andPhillip reported receiving little support once Bet-tina was discharged home.

It was all of a sudden like you’re on your own. Notjust on your own but out the back of nowhere. No onecares, you’re gone. (Bettina)

Bettina thought her GP was responsible formanaging her care once she was discharged fromthe acute hospital. However, Bettina reported thather GP’s attitude, competence and poor knowledgeof TBI did not help her recovery. ‘The local doctor,he’s bloody hopeless. He won’t listen’ (Phillip).Bettina now avoids going to see her GP.

He’s there for the money. The amount of times Bettinawould go, ‘I’ve got to get another prescription, Iwonder if he’s away and I can get someone else.’I keep saying to her, ‘Go to someone else’, but youknow there are not many doctors [in the country].(Phillip)

Bettina reported receiving 3 to 4 months ofoutpatient services following a referral by socialservices to a community-based rehabilitation pro-gramme for return-to-work services. She statedthat this period of rehabilitation was extremelybeneficial.

I was eligible for rehab and a girl, Michelle, treatedme. She was brilliant because she picked up therewas a major problem with my hand. She organisedfor me to see a surgeon about it. She was really good.She set goals with me. (Bettina)

Eight months after Bettina’s accident, Phillipand Bettina’s relationship broke down and Phillip

left. Phillip reported receiving no formal supportservices or counselling to help him understandwhat Bettina was experiencing. He stated that hadhe received these services, he might have beenmore supportive.

If they’d have said, ‘look you’re going to have prob-lems’, then we both would have been prepared for it.We wouldn’t have gone off the handle and said, ‘wellstuff you’. (Phillip)

Not long after Phillip left, Bettina met anotherman who had also sustained a TBI. She reportedthat the time she spent in this new relationshiphelped her to gain insight into her own behaviour.

Thirteen months after Phillip had left I started seeinga man who also had a brain injury. I think the funnypart about it was, the thing we most had in com-mon is my face. It is constantly numb and it drivesme mad. Apparently it’ll always be like that and heknew exactly how that felt because he had the sameproblem. But he would get into, oh God, his rageswere worse than mine. He was drinking a hell of a lotmore. That was a pretty big wakeup [call] becauseI’d sort of look at him and think, ‘is that what I wasdoing to Phillip?’ (Bettina)

Bettina’s relationship with this second man brokedown and in time Bettina and Phillip’s relationshipwas renewed. When reflecting on the experiencesthey had following Bettina’s TBI, Phillip reported:

In the hospital, the care couldn’t have been better,but the information that they pass over to you in thereand afterwards was just non-existent. Virtually, whenBettina left the hospital, the care was virtually non-existent. But if they had’ve been able to give us a listof services, it may have saved us a lot of drama andhassle and heartache. (Phillip)

322


FIGURE 3

Bettina’s ability to access services. Personal factors: acceptance and readiness (black line), support (dotted line),advocacy (grey line), right service at the right time (lines of dashes) and mismatched expectation (line of squares).

Bettina added to this, saying:

I’ve probably fallen between the boards, haven’t I?I wasn’t [compensable], I wasn’t [private health], Iwasn’t any of those. So I just fell through the gaps.There weren’t dollars there. So I’m cynical, if there’sno dollars, people don’t worry. (Bettina)

Interpreting Bettina’s Journey in the Lightof the Interaction of FactorsFigure 3 reflects the impact of the five person-related factors on Bettina’s healthcare journey. Ascan be seen, only twice were the factors support,the right service at the right time and matched ex-pectations in place to enable Bettina to effectivelyaccess services. This occurred first in the acutephase of Bettina’s care, when she was admittedto a specialist acute metropolitan hospital. At thistime she had strong support from her partner Phillipwho travelled to be with her daily, the service sheneeded (i.e., acute care) was available and, givenhow impaired she was, she expected to receive theservice and was therefore motivated to accept it.

The second instance in which person-relatedfactors aligned to enable effective access to ser-vices was when Bettina received outpatient reha-bilitation services. Her access to this service is de-picted by person-related factors once again risingabove the stages of rehabilitation model, indicatingfacilitated access. A service was available that metBettina’s needs and expectations and therefore sheaccessed it. As can be seen in Figure 3, person-related factors facilitating and impeding Bettina’saccess to services were fluid, changing over time.

For example, Bettina’s acceptance of her TBI andreadiness to engage with services increased slowlyover time. This factor therefore changed from im-peding access to facilitating it.

As Bettina related in her narrative, she did notknow at the time of her injury that she had sustainedanything more than physical injuries. Therefore,she was unable to accept the non-physical conse-quences of her injury. Bettina did talk, however,about a growing awareness and acceptance of thecognitive sequelae of her TBI (e.g., her uncon-trollable rage) when she spent time with anotherperson who also had a TBI. This is depicted inFigure 3, as the personal factor acceptance andreadiness slowly rises from impeding to facilitat-ing access to services.

Initially, the factor right service at the righttime also played the role of a facilitator (i.e., Bettinareceived acute care services when she was medi-cally unwell). At this time Bettina and her familyexpected and advocated (i.e., rang an ambulance)for acute services and they were received. How-ever, once Bettina was discharged from acute care,she was not referred for further services. Nor didshe perceive a need for them. Therefore, the factorright service at the right time no longer facilitatedher access. Finally, the right service at the righttime re-emerged as a facilitator when Bettina wasreferred to Commonwealth Rehabilitation Servicefor vocational rehabilitation. At this stage, Bettinafelt she needed the service and the service providedat this time met her needs.

Like the factor the right service at the righttime, Bettina’s access to support initially acted as a

323


facilitator but changed to impedance when Phillipand Bettina’s relationship broke down. Phillip re-ported leaving Bettina as he did not understandher TBI and the cognitive and behavioural seque-lae she suffered (i.e., memory lapses, bouts of rageand frustration). He reported that had he been giveninformation about Bettina’s TBI and had supportbeen available to him, he would have been betterable to cope when she was discharged home.

Taking into account that Phillip and Bettina’srelationship broke down and that she was unawareshe had a TBI, it is little surprise that the factoradvocacy did not ever facilitate Bettina’s access toservices. A small rise in advocacy efforts is notedin Figure 3 when Bettina approached her GP to re-quest access to counselling services. However, thisattempt to self-advocate in order to obtain serviceswas not successful and was not repeated.

From Bettina’s story, it is evident that the ser-vices she received following her TBI were affectedby the degree of her acceptance of her TBI andtherefore her readiness to engage in therapy, thesupport she received, and her ability to access theright service, which matched her expectations, atthe right time. Given Bettina’s poor level of aware-ness of her TBI, the lack of information she re-ceived and her limited access to advocacy, it is notsurprising that she accessed only acute care andtime-limited outpatient services.

Melinda’s JourneyMelinda sustained her head injury one morningafter collapsing in her daughter’s room at home.Her partner, Drew, found her and immediately rangan ambulance.

It happened on the 26th of July at seven o’clock inthe morning. I don’t remember anything. I rememberthe night before. I had a huge argument with my ex-husband and I went to bed crying, that was the wayI fell asleep. I woke up in the hospital 2 weeks later.

Melinda was taken from her home to the closestregional hospital via ambulance. At this hospital,Melinda reported that her husband had to stronglyadvocate for her to be seen by a doctor. Melindareported that she felt she would have died at theregional hospital if not for her husband’s constantpushing.

My husband was especially forceful with doctors.He told them, ‘Look, she was pulling her hair outwhen she fainted. She’s got something wrong withher head.’ They were keeping me in intensive carein the emergency department waiting for a doctor tocome and see me. They had no idea what was wrongwith me. They didn’t even go and find out. So mybody started to shut down bit by bit. By that time my

husband just pulled them and shook them up, ‘Hey,she is dying.’ So I could have died if my husbanddidn’t push the staff hard enough. I would have diedin [name of the regional] hospital.

Melinda was airlifted to a metropolitan special-ist acute hospital following a magnetic resonanceimaging (MRI) scan at the regional hospital whichrevealed blood clots in her brain. She stayed at themetropolitan hospital for approximately 3 weeks.During this time, she had neurosurgery and spenta period of time in a coma.

I don’t remember the time I was recovering in thecoma. My family said it was a huge shock for them tosee me acting like a little girl. I started withdrawing.I did not recognise them. I did not recognise mychildren. They were very hurt. The biggest mistakewas that nobody could explain to the children whymummy was like that.

Melinda reported she received medical, al-lied health and psychology services while at themetropolitan specialist acute hospital. She statedshe was happy with the medical care she receivedwhile she was there, but one big issue she identifiedwas the lack of information given to her by somemedical staff.

One day, I said to one of the surgeons, ‘Who didthe surgery?’ I wanted to speak with one of them. Iwanted information. I wanted explanation. I felt likeI was dying. I needed somebody to tell me what hadhappened to me. I went to the bathroom, there was nomirror, I couldn’t see myself. I put my hands on myhead and I was half shaved. I could feel the stitchesand I thought, ‘What has happened to me?’ I had noproper explanation of what had happened to me. Ididn’t know why I was there. What had happened?Who brought me there? I needed an explanation.

Melinda was transferred from the metropolitanspecialist acute hospital to a metropolitan publicmedical centre for inpatient rehabilitation. I es-caped rehab on the 19th of August. I was in re-habilitation for 3 days. Melinda reported stayingin residential rehabilitation for 3 days before dis-charging herself. Melinda reported that she wasnever told the reasons why she needed to receiverehabilitation and as she was placed in a ward withpeople she perceived to have intellectual impair-ments, she felt she did not belong.

If they explained to me the real purpose of rehabil-itation and didn’t treat me like a mental person, Iwould have stayed longer. I told the doctor on Sun-day night, I told him, ‘If you don’t discharge me andlet me go home to rest properly, then I will leave.I’ve got a family who can take me to the rehab to betreated or trained.’ I remember on the Sunday I left.My husband came in and I said, ‘You take me home

324


or I will call a taxi’ and I walked out. I couldn’t standit. I absolutely could not stand it.

Melinda reported that she received limited alliedhealth services while in residential rehabilitation.However, she qualified this saying that she did nothave insight into her difficulties at that point, so shedid not understand or comply with needed therapy.

I had a physiotherapist who was trying to teach meto walk straight and I remember I was very dis-appointed. At that time I was freshly hurt and notaccepting what had happened to me. They asked me,I’ll never forget, I had a huge white line in front of meand the physio asked me, ‘Can you walk this whiteline?’ and I said to him, ‘What do you think, I’m adrunk person, I can’t walk straight?’ He said, ‘No,just for your balance.’

Melinda said that while she was in residential re-habilitation she felt she needed to rest in orderto recover. She felt that she was unable to dothat in a busy, noisy hospital; therefore she left.Once Melinda discharged herself from rehabilita-tion, she and her husband went away for 4 days.During this time, Melinda stated she slept con-stantly. Melinda reported that her husband kept incontact with the rehabilitation hospital at that timeso that they could continue to monitor her recovery.

My husband had to give up his work to look after me.I had to stay with my brother and my sister-in-lawfor one month after rehab. My sister-in-law stayedwith me constantly. She looked after me and bathedme. I could dress properly. But there always had tobe somebody there to hold my hand and talk to me.

After a period of time, Melinda started to ac-cess public health services as an outpatient. How-ever, she reported that the staff employed withinthis service were not specialists in brain injury.Therefore, the therapy she received there was notalways helpful.

They put me in a public rehab stream which wasvery cheap. Not just cheap but not well-trained peo-ple. The staff weren’t trained how to help peoplerecovering from brain surgery. They had no idea. Iwas speaking with them. I was trying to find out whattheir expectation was. ‘Am I okay? Is it alright to belike that?’ They replied ‘I’m sorry we can’t help youwith that, you have to go back to the [name of spe-cialist acute metropolitan hospital].’ But I can’t gothere without a referral so I had to go back to mygeneral practitioner, tell the story to him and thenhe told me that I had to organise that myself. So theywere of no help.

Melinda reported that she constantly had topush her general practitioner for referrals to accesscounselling services, to have repeat MRI scans and

to access follow-up neurosurgery reviews, all ofwhich she had to self-fund.

I didn’t have private insurance but I paid privately. Ipaid the full charge for the MRI tests. I paid the fullcharge for the brain surgeon. I paid full price for apsychologist to see me.

Melinda also reported that little support or infor-mation about her brain injury was provided to herhusband and children.

Luckily, I’ve got an intelligent husband. He dealt withmy brain injury. But he also had to work because Icouldn’t work. He had to work to support us so itwas very hard.

Melinda reported that her family received noform of accommodation or travel subsidy through-out her healthcare journey. She stated that she didnot even know support was available.

Interpreting Melinda’s Journey in the Lightof the Interaction of FactorsFigure 4 illustrates the impact of the five per-sonal factors on Melinda’s healthcare journey fol-lowing her brain injury. As can be seen, serviceswere available and family support remained con-stant throughout the entirety of Melinda’s health-care journey. Specialist services were provided bythe metropolitan specialist acute hospital and resi-dential rehabilitation was then available through apublic medical centre. Non-residential, outpatientservices were then provided by Melinda’s localpublic health centre, and ongoing monitoring wasavailable through yearly outpatient neurosurgeryreviews at her metropolitan specialist acute hospi-tal.

Melinda reported varied access to services dueto reported problems with lack of insight delayingher readiness for services. Melinda reported shewas not ready for services until after she had re-turned home and developed an understanding ofwhat had happened to her. This was the reasonMelinda gave when explaining why she needed toleave inpatient rehabilitation.

I didn’t know what had happened to me. One day Iwas perfect, the next day I was a half vegetable. Ineeded to go home, to see that everything was okay.Then I would be right to go back to rehab. I needed tounderstand what happened to me. Then I was readyto go back and get better.

Mismatched expectations also resulted in dis-rupted continuity between stages in Melinda’shealthcare journey. She expected that the rehabil-itation services provided to her would be special-ist. In reality, this was not the case. Mismatched

325


FIGURE 4

Melinda’s ability to access services. Personal factors: acceptance and readiness (black line), support (dotted line),advocacy (grey line), right service at the right time (lines of dashes) and mismatched expectation (line of squares).

expectations were evident in her annoyance withthe outpatient services provided to her by the localpublic health centre, which she described as cheapwith not well-trained people. At this time Melindahad accepted her injury, was ready for services andhad strong family support. This meant that the fa-cilitators (i.e., acceptance and readiness, and sup-port) outweighed the impediments (mismatchedexpectations) and thus Melinda continued to ac-cess the service even though it did not meet herexpectations.

Melinda’s story shows the dynamic and com-plex relationship between person-related factorswhich appear to play a role in determining con-sumers’ access to services regardless of serviceavailability following brain injury.

Oscar’s JourneyLike Melinda, Oscar had services continuallyavailable to him. He also had constant support fromhis family and continuing advocacy from his fam-ily and staff involved in his care. His journey is asfollows.

Oscar sustained his brain injury after being as-saulted when out late with friends in the city.

It was around about 4.00 a.m. Some people saw meon the sidewalk bleeding badly from the face andinitially they thought I was just drunk but then uponinspection, they found out no, I had been assaulted.So an ambulance was called and I was taken to the[name of metropolitan specialist acute] hospital. Iobviously don’t know all the details. I just remem-

ber waking up. The doctors said that 95% of peoplewould have died as a result of the injuries that I sus-tained. Your body goes into flight or fight mode, andfortunately my body went into fight mode.

Oscar was initially treated on the scene byparamedic staff before being transferred to ametropolitan specialist trauma centre for his acutecare. Oscar reported he could not remember muchof his time in the acute hospital. He rememberedreceiving adequate medical care and he mentionedhe had two friends who were ICU doctors, whowere able to look out for him and see that he gotthe care he needed.

I come from a reasonably privileged background andone of my best friends’ brother is a doctor at the[name of metropolitan specialist acute hospital] inintensive care unit and his fiancee works in intensivecare. Because I have friends in the medical profes-sion, they’re going to ask for updates and check howI’m going.

Oscar reported staying in acute care for some-where between 4 and 7 days before being trans-ferred to a metropolitan private hospital for spe-cialist neuro-rehabilitative care. Oscar remained atthis hospital for approximately 4 weeks before self-discharging.

My frustration grew over time because I didn’t wantto be there. I wanted to be doing my job, livingat home, doing my own thing. I was in a situationwhere my career was going very, very well and allof that independence had been stripped away. Beinglocked down in the room, in the ward and having an

326


orderly follow me around for up to a month becauseI couldn’t pass the post-traumatic amnesia memorytest was extremely frustrating.

Oscar reported he self-discharged because at thattime he was fed up with the hospital and perfectlycapable of looking after himself. Oscar remem-bered receiving allied health services while in re-habilitation, including physiotherapy, speech ther-apy, social work and one consultation with an oc-cupational therapist.

Physio, I had to have numerous times a week. Onceagain, it was very frustrating. Having been a regu-lar gym attendee, I liked running on the treadmill,doing you know an average of 12 km per hour. But Iwas told I’m only allowed to do 5 km per hour andwalk. Also, being very coordinated, having been awindsurfer and having state titles to my name andlosing my balancing skills was pretty hard. But I’mpretty persistent so I just stick at it until I get on topagain.

Oscar also reported that he received neuropsychol-ogy services and adequate medical care.

I did a lot of neuropsychology and my building arapport with my neuropsychologist was key. I hadfaith in her and I trusted her and that was a keyfactor. I knew that I could fall back on that.

Once discharged, Oscar returned to his parents’home for a period of time before returning to hisflat. Oscar reported this was a difficult time forhim as he once again felt as if he had lost hisindependence.

I had to move back in with my parents. There werea couple of issues there in that as I was a victimof crime. I’d been assaulted. I was pretty nervousabout going back to my apartment, and not beingable to drive as well, was a big factor. So yeah, thatindependence was all stripped away.

Oscar received outpatient services through apublic medical centre. The services he received in-cluded case management, return-to-work services,a driving assessment, ongoing allied health ser-vices including physiotherapy and neuropsychol-ogy, and ongoing specialist medical care. Oscarreported that the length, intensity and duration ofthese services varied throughout his recovery, ac-cording to his need. Oscar stated that his originalreturn to work plan was unsuccessful.

I wanted to go back to work and they wouldn’t letme back to work for 3 months. I think my first weekback was a 6 hour week, doing 2 or 3 hours a day. Iwas in a national role at the time as a project man-ager with a high level of degree and responsibility,so you can imagine that I couldn’t fulfil my duties.Eventually I had to resign but with the support of my

managers and the organisation. I was liaising withsenior management there and they were very sup-portive. But being highly successful in business andbeing 25 at the time, and having to resign I guessled to post-traumatic depression because in my situ-ation, my job was a very large part of my identity.

Oscar reported he no longer received regular ser-vices or ongoing monitoring. However, he statedthat he has built a relationship with all of his ther-apists and therefore believed it would not be hardto re-engage with services if needed.

I usually find a way of getting around the system.Which is probably cocky and arrogant but I’m able todo that . . . I have always had somebody to fall backon but that’s because of the relationships that I’vemade with those people, not because the processesexist. I often get my way, but that’s through a lotof persistence and a lot of battling red tape andadministration.

Oscar received compensation through a lumpsum payout through the Victims of Crime Tribunal.Oscar believes this lump sum does not reflect hisloss of earnings nor ongoing medical costs.

I had lost well over $100,000, in earnings. I gotawarded the maximum amount which was onlyaround $20,000 so I lost a heap of earnings. I got themaximum lump sum possible and it didn’t even coveranything and certainly no emotional compensationor punitive compensation of any sort.

Oscar believes that general funding for head in-juries is inequitable.

Perhaps with the Victims of Crime money may havecovered the hospital charges and I know the com-pensable people, which most of the people were,would have been awarded ten times the amount thatI got from Victims of Crime. So it’s quite inequitable.

Apart from funding impacting on Oscar’s contin-uum of care, Oscar also reported:

Had my parents not been there, I would have beena lot worse off. I mean I had my room at my houseand they fed me, etc. If I hadn’t had that I don’t knowhow I would have recovered. Well, it certainly wouldhave been harder.

Interpreting Oscar’s Journey in the Lightof the Interaction of FactorsFigure 5 reflects the impact of the five personalfactors on Oscar’s healthcare journey. As can beseen in this figure, the factors support, advocacyand the right service at the right time, remainedconstant through Oscar’s continuum of care. Thefactors that changed, resulting in varied care, were

327


FIGURE 5

Oscar’s ability to access services. Personal factors: acceptance and readiness (black line), support (dotted line),advocacy (grey line), right service at the right time (lines of dashes) and mismatched expectation (line of squares).

Oscar’s insight affecting his acceptance and readi-ness for services, and his expectations compared tothose of his service providers about the character-istics of services provided.

The black line depicted in Figure 5 reflects howOscar’s level of acceptance and readiness changedthrough time. Oscar reported that he did not de-velop a proper understanding of his brain injuryand his changed capacity until after he left resi-dential rehabilitation. Therefore, his willingness totruly engage with services, depicted by the raisedblack line, was not evident until he began to accessnon-residential outpatient services.

Given Oscar’s limited acceptance of his in-juries in the acute and residential rehabilitationstages of his care, it is not surprising that his ex-pectations for service (as depicted by the line ofsquares in Figure 5) was mismatched with the ex-pectations of those providing his service. This mis-match in expectations, alongside Oscar’s impairedinsight, meant that Oscar engaged in a period offalse compliance with therapy while in inpatientrehabilitation before he eventually abandoned theservice.

Regardless of this fact, the constant supportand advocacy from Oscar’s family (see the dottedand grey lines in Figure 5) meant that even thoughhe disengaged from care in a residential setting,they were able to advocate for community-basedbrain injury services following his discharge. Thus,even though Oscar needed time to accept his braininjury and become ready to access services, he stillreceived continued care in line with clinical careguidelines.

Discussion

Previous articles presenting aspects of this research(O’Callaghan et al., 2012) provided a sequentialdiscussion of each personal factor impacting uponaccess to services following brain injury These fac-tors included degree of acceptance of impairmentsand readiness to engage with therapy of an adultwith brain injury, their ability to access support,the presence of an advocate, whether the right ser-vice was accessed at the right time and whetherthe services accessed matched the expectations ofthe person accessing them. This article adds to un-derstanding of the influence of these factors onrehabilitation for participants with brain injury, byreflecting on how the factors change through time,acting as either a facilitator or impediment whenadults with brain injury attempt to access services.

The central concept in the data discussed in thisarticle is the element of time, and how, as a resultof personal factors changing through time, accessto services can change. In the case of an adult withbrain injury, stakeholders (i.e., healthcare provideror consumer, participant with brain injury or sig-nificant other) often have varying views on theimportance of time and its applicability to servicesaccessed. For example, healthcare providers oftenreflect on time as an important indicator for clientoutcome. Time post-injury has long been viewedby clinicians is a prognostic indicator of severityof injury. Katz and Alexander’s (1994) study ofoutcomes based on length of coma for 199 peoplewith brain injury indicated that outcomes were pro-gressively worse as the duration of an adult’s coma

328


increased. Time post-injury can also be viewed asan indicator for potential recovery. Mackay, Bern-stein, Chapman, Morgan, and Milazzo (1992) ar-gued that the earlier an adult accesses rehabilitationfollowing brain injury, the greater the potential re-covery.

Clinical care guidelines stipulate that timingis important to ensure a person’s ultimate recov-ery following brain injury. They state that rehabil-itation should start as soon as possible and con-tinue for as long as necessary (British Societyof Rehabilitation Medicine & Royal College ofPhysicians, 2003; New Zealand Guidelines Group,2006). Early rehabilitation following brain injuryand re-admission to rehabilitation have been shownto be beneficial for physical improvement and re-turn of self-care skills (Tuel, Presty, Meythaler,Heinemann, & Katz, 1992), for preventing sec-ondary complications and for facilitating overallrecovery (Mackay et al., 1992). Gentleman (2001)stated that recovery following brain injury is great-est in the first 3 months following injury. There-fore, clinicians see an obvious advantage in work-ing with adults with brain injury during this period,rather than trying to ‘catch up’ later.

Nevertheless, as highlighted by participants’accounts in this study, consideration of the theo-retical recovery curve following brain injury (Gen-tleman, 2001) and a wish to maximise a person’srecovery during periods of increased neuroplastic-ity should not be the only considerations cliniciansreflect upon when deciding when clients should re-ceive services. The data reported in this study showthat personal factors that involve the considerationof time, such as consumers’ degree of acceptanceor awareness of their brain injury and readiness toengage in therapy, are also important.

According to Morton and Barker (2010),deficits in self-awareness and denial of acquiredimpairments can seriously interfere with participa-tion in rehabilitation by adults with brain injury.Deficits in self-awareness have been reported tocause problems with engagement in therapy tasks,compliance with suggested behavioural changes,and uptake and use of compensatory strategies.Adults with impaired awareness are often poorlymotivated to comply with therapies to addressdeficits that they do not recognise or believe ex-ist (Sherer et al., 1998). Therefore, regardless ofclinicians’ wishes to maximise client gains duringperiods of increased neuroplasticity, people withbrain injury may not be cognitively ready to en-gage with therapy during such periods.

The level of self-awareness in people withbrain injury improves over time following brain in-jury (Fleming, Strong, & Ashton, 1998). If lack ofawareness of deficits persists despite interventions

designed to facilitate its development (e.g., videofeedback, education regarding deficits, reality test-ing through engagement in real-life activities), itmay be necessary to cease formal rehabilitation,with appropriate supports in place for a period oftime, to avoid client frustrations with the rehabilita-tion process (Schmidt, Fleming, Ownsworth, Lan-nin, & Khan, 2012). If formal rehabilitation was tobe ceased long term, monitoring would be essentialto determine whether self-awareness developed ata later stage, and whether intervention was appro-priate at this time.

The degree of self-awareness is one exampleof a personal factor which impacts upon the abilityof an adult with brain injury to engage in therapy.This factor can impact negatively on a person’smotivation to engage with therapy, affecting theirlikely outcome, regardless of health professionals’desires to provide early rehabilitation as definedby best practice guidelines. Acceptance and readi-ness, along with the other person-related factors,support, advocacy, the right service at the righttime and mismatched expectations, must be con-sidered if available services are to be accessed.Without consideration of these factors, services al-located may not be utilised. For people with braininjury and their families to be actively engaged ina service, they first need to acknowledge their needfor this service. Unless the person with brain in-jury can identify that he or she has a brain injurywith secondary impairments that require therapyfor improvement, further therapy may be futile.The person may not yet be ready to accept theirimpairments and is therefore not ready for treat-ment. Therefore, service referrals generated at thistime may not be engaged with.

In service allocation, clinicians’ considerationof the degree of support or advocacy available toclients with brain injury and their families is alsoimportant. Formal services can, at times, disem-power clients and their families (Foster et al., 2012;MacPhail, 1998; Stringer, 1999). Limited histori-cal involvement in therapy goal setting and con-tinuum of care planning can mean that adults withbrain injury become passive recipients of healthservices. Without a strong advocate or support per-son these clients may become ‘lost in the system’.Clinicians need to monitor closely clients with poorsupport networks and limited advocacy skills fol-lowing their discharge from formal services, to as-sist them to access services when needed. If theprovision of client monitoring following dischargeis not within the scope of the service provided, clin-icians need to refer these at-risk clients to formalcase management services.

When planning future services, clinicians alsoneed to openly discuss with people with brain

329


injury and their families what their needs and ex-pectations are of the services to be provided. In thisway services that clients are referred to are morelikely to match their expectations and to be pro-vided at a time when they are needed or wanted.Only after joint consideration of non-personal andperson-related factors will appropriate service re-ferrals be generated with a greater likelihood ofservices being truly engaged with.

Although the five person-related factors dis-cussed in this paper were identified following theanalysis of 386 surveys and 17 in-depth interviews,only three participant narratives were reviewed inthis paper. Further exploration of the impact ofthese five factors on a greater number of healthnarratives from adults with brain injury would helpto strengthen the transferability of interpretationsmade in this paper to other adults with TBI and theirfamilies, and to other healthcare contexts (e.g., indifferent countries with different healthcare fund-ing models).

This paper is the first in the TBI literatureto discuss explicitly the need for and barriers tohealth services experienced by consumers withbrain injury, and how these factors change through-out time, either impeding or facilitating access tohealth care. As stated in the introduction to this ar-ticle, national and international clinical care guide-lines exist recommending a continuum of care thatis widely recognised as best practice for interven-tion following TBI. However, the intervention re-ceived may not be what is wanted, needed anduseful for people with TBI and their families ata particular point in time. Service providers andguideline formulators should be open to the pos-sibility that, if recommendations for interventionare not useful for certain clients with TBI, thenservice provision needs to be adapted, regardlessof the time pressures imposed by service policyand attempts to maximise client gains during peri-ods of greatest neuroplasticity. The narratives pre-sented in this paper illustrate that a ‘one size fitsall’ approach is not what adults with TBI and theirfamilies want or need. The person-related factorsof individual adults with TBI and their significantothers should be continually reviewed and consid-ered, in addition to pressures related to the contextof care (e.g., policy and resource allocation) andhealth professionals’ perceptions of client charac-teristics (i.e., clinical and non-clinical characteris-tics), before referrals for services are made. Onlywhen a match exists between the characteristics ofservices provided and the beliefs and expectationsof the adults with TBI and their families, will avail-able services be utilised effectively and equity inTBI care achieved.

ReferencesAccident Rehabilitation and Compensation Insurance

Corporation, & National Health Committee. (1998).Traumatic brain injury rehabilitation guidelines.Medical Journal of Australia, 167, 293–294.

Blight, R. (1991). Improving resource allocation and in-frastructure. Paper presented at the 1st National Ru-ral Health Conference, Toowoomba, Queensland.

British Society of Rehabilitation Medicine, & Royal Col-lege of Physicians. (2003). Rehabilitation followingacquired brain injury: National clinical guidelines.London: The Lavenham Press.

Brookshire, R.H. (2003). Introduction to neurogeniccommunication disorders. Missouri: Mosby.

Brown, M. (1991). Identifying the health needs of re-mote and rural communities. Paper presented at the1st National Rural Health Conference, Toowoomba,Queensland.

Cicerone, K.D., Mott, T., Azulay, J.A., & Friel, J. (2004).Community integration and satisfaction with func-tioning after intensive cognitive rehabilitation fortraumatic brain injury. Archives of Physical Medicineand Rehabilitation, 85, 1643–1650.

Commonwealth Department of Health and AgedCare. (2001). Measuring remoteness: Accessibil-ity/remoteness index of Australia (ARIA). In Oc-casional Papers: New Series 14. October 2001.Canberra: DHAC.

Denzin, Y.K., & Lincoln, Y.S. (2005). The Sage handbookof qualitative research (3rd vol.). Thousand Oaks,California: Sage Publications.

Fleming, J.M., Strong, J., & Ashton, R. (1998). Clusteranalysis of self awareness levels in adults with traum-atic brain injury and relationship to outcome. Journalof Head Trauma Rehabilitation, 13(5), 39–51.

Foster, A.M., Armstrong, J., Buckley, A., Sherry, J.,Young, T., Foliaki, S., . . . McPherson, K.M. (2012).Encouraging family engagement in the rehabilitationprocess: a rehabilitation provider’s development ofsupport strategies for family members of people withtraumatic brain injury. Disability & Rehabilitation,34(22), 1855–1862.

Gentleman, D. (2001). Rehabilitation after traumaticbrain injury. Trauma, 3, 193–204.

Goranson, T.E., Graves, R.E., Allison, D., & La Freniere,R. (2003). Community integration following multi-disciplinary rehabilitation for traumatic brain injury.Brain Injury, 17, 759–774.

Grbich, C. (1999). Qualitative research design. In A.Minichello, K. Sullivan, K. Greenwood & R. Axford(Eds.), Handbook for research methods in health sci-ences. China: Pearsons Education Australia.

Hickson, M. (2008). Research handbook for health careprofessionals. Oxford: Blackwell Publishing.

Hughes, P. (2003). Paradigms, methods and knowledge.In G. MacNaughton, S. Rolfe & J. Siraj-Blatchford.(Eds.), Doing early childhood research: Interna-tional perspectives on theory and practice. CrowsNest, NSW: Allen & Unwin.

330


Humphreys, J., Mathews-Cowey, S., & Weinand, H.C.(1997). Factors in accessibility of general practicein rural Australia. Medical Journal of Australia,166(11), 577–580.

Humphreys, J., & Rolley, F. (1993). Health carebehaviour and service provision in rural Aus-tralia. Armidale, New South Wales: Universityof New England, Department of Geography andPlanning.

Josselson, R. (2006). Narrative research and the chal-lenge of accumulating knowledge. Narrative In-quiry, 16(1), 3–10.

Katz, D.I., & Alexander, M.P. (1994). Traumatic braininjury – predicting course of recovery and outcomefor patients admitted to rehabilitation. Archives ofNeurology, 51(7), 661–670.

Keleher, H. (1999). Rural public health matters. Aus-tralian and New Zealand Journal of Public Health,23, 342–344.

LeFebvre, H., Pelchat, D., Swaine, B., Gelinas, I., &Levert, M.J. (2005). The experiences of individu-als with a traumatic brain injury, families, physi-cians and health professionals regarding care pro-vided throughout the continuum. Brain Injury, 19(8),585–597.

Mackay, L.E., Bernstein, B.A., Chapman, P.E., Morgan,A.S., & Milazzo, L.S. (1992). Early intervention insevere head injury: long-term benefits of a formal-ized program. Archives of Physical Medicine andRehabilitation, 73(7), 635–641.

MacPhail, M. (1998). Accomodation support services forpersons with acquired brain injury. Victoria: BallaratHealth Service.

Malec, J.F. (2001). Impact of comprehensive day treat-ment on societal participation for persons with ac-quired brain injury. Archives of Physical Medicineand Rehabilitation, 82, 885–895.

McNaughton, H. (2004). Traumatic brain injury reha-bilitation in New Zealand: Current practice review.Wellington, NZ: Medical Research Institute of NewZealand.

Minichiello, V., Madison, J., Hays, T., Courtney, M.,& St John, W. (1999). Qualitative interviews. In V.Minichiello, G. Sullivan, K. Greenwood & R. Axford(Eds.), Handbook for research methods in health sci-ences. Sydney: Addison Wesley Longman Australia.

Morse, J.M., & Field, P.A. (1995). Qualitative researchmethods health professionals (2nd ed.). ThousandOaks, CA: SAGE Publications.

Morton, N., & Barker, L. (2010). The contribution ofinjury severity, executive and implicit functions toawareness of deficits after traumatic brain injury(TBI). Journal of the International Neuropsycholog-ical Society: JINS, 16(6), 1089–1098.

Muus, K., Cogan, M., Offutt, S., & Medalen, R. (2006).Perceived barriers to accessing health and social ser-vices among individuals with traumatic brain injury.Journal of Head Trauma Rehabilitation, 21(5), 431.

National Rural Health Policy Forum. (1999). Healthhorizons: A framework for improving the health

of rural, regional and remote Australians 1999–2003 Retrieved from http://www.ruralhealth.org.au/nrhpublic

New Zealand Guidelines Group. (2006). Traumatic braininjury: Diagnosis, acute mangagement and rehabil-itation. Wellington: Accident Compensation Corpo-ration.

O’Callaghan, A.M., McAllister, L., & Wilson, L. (2009).Sixteen years on has quality of care for rural andnon-compensable traumatic brain injury clients im-proved? Australian Journal of Rural Health, 17(3),119–123.

O’Callaghan, A.M., McAllister, L., & Wilson, L. (2010).Experiences of care reported by adults with trau-matic brain injury. International Journal of Speech-Language Pathology, 12(2), 107–123.

O’Callaghan, A.M., McAllister, L., & Wilson, L. (2011).Experiences of care: Perspectives of carers of adultswith traumatic brain injury. International Journal ofSpeech-Language Pathology, 13(3), 218–227.

O’Callaghan, A.M., McAllister, L., & Wilson, L.(2012). Insight versus readiness: Factors affect-ing engagement in therapy from the perspec-tives of adults with TBI and their significantothers. Brain Injury, 1–2(Early Online). doi:doi:10.3109/02699052.2012.698788

Penchansky, R., & William Thomas, J. (1981). The con-cept of access: Definition and relationship to con-sumer satisfaction. Medical Care, XIX(2), 127–140.

Rankin, N., Newell, S., Sanson-Fisher, R., & Girgus, A.(2000). Consumer participation in the developmentof psychosical clinical practice guidelines: Opinionsof women with breast cancer. European Journal ofCancer Care, 9, 97–104.

Sandelowski, M. (1991). Telling stories: Narrative ap-proaches in qualitative research. Image: Journal ofNursing Scholarship, 23(3), 161–166.

Schmidt, J., Fleming, J., Ownsworth, T., Lannin, N., &Khan, A. (2012). Feedback interventions for improv-ing self-awareness after brain injury: A protocol fora pragmatic randomised controlled trial. AustralianOccupational Therapy Journal, 59(2), 138–146.

Schwandt, T.A. (2000). Three epistemological stancesfor qualitative inquiry. In Y.K. Denzin & M. Lincoln(Eds.), Handbook of qualitative research (pp. 189–213). Thousand Oaks, CA: Sage Publications.

Seale, G.S., Caroselli, J.S., High, W.M., Becker, C.L.,Neese, L.E., & Scheibel, R.S. (2002). Use of thecommunity integration questionnaire to characterisechanges in functioning for individuals with traumaticbrain injury who participated in a post-acute rehabil-iation programme. Brain Injury, 16, 955–967.

Sherer, M., Bergloff, P., Levin, E., High, W.M., Oden,K.E., & Nick, T.G. (1998). Impaired awareness andemployment outcome after taumatic brain injury. TheJournal of Head Trauma Rehabilitation, 13(5), 52–61.

Stringer, K. (1999). Study into the accommodation needsfor young people requiring nursing homes. Mel-bourne: Melbourne Citymission.

331


Tuel, S.M., Presty, S.K., Meythaler, J.M., Heinemann,A.W., & Katz, R.T. (1992). Functional improvementin severe head injury after readmission for rehabili-tation. Brain Injury, 6(4), 337–343.

Turner-Stokes, L., Disler, P.B., Nair, A., & Wade, D.T.(2005). Multi-disciplinary rehabilitation for acquired

brain injury in adults of working age (review). TheCochrane Collaboration, 4, 1–29.

Youse, K.M., Le, K.N., Cannizzaro, M.Z., & Coelho,C.A. (2002). Traumatic brain injury: A primer forprofessionals. American Speech and Hearing Asso-ciation, April., 4–7.

332

Date post:	23-Aug-2020
Category:	Documents
Upload:	others
View:	0 times
Download:	0 times

Healthcare Consumers’ Need for Brain-injury Services: The ...€¦ · Healthcare Consumers’...

Documents