family carers and the adult head-injured: a critical review of carers' needs

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Subject review Family carers and the adult head-injured: a critical review of carers’ needs INDRANI SINNAKARUPPAN and DENISE M. WILLIAMS Department of Psychology, Douglas Grant Rehabilitation Centre, Ayrshire Central Hospital, Irvine, Ayrshire, Scotland (Received 11 September 2000; accepted 18 November 2000 ) Primary objective: To appraise recent literature on the topic of perceived needs of family carers of head- injured adult relatives. MEDLINE (1966± 2000), EMBASE PSYCHIATRY (1987± 1999), CINAHL (1982± January 2000) and PSYCHLIT (1967± 1999) databases were searched. Main outcomes and results: A total of 13 papers were reviewed, of which six employed standardized research methods. The remainder used researcher developed questionnaires. Needs described by carers as important were predominantly related to information. Most unmet needs were linked to the provision of emotional support. There were significant differences in the perceived needs and their fulfilment between parental and spousal carers. In addition, unfulfilled needs could be predicted by behavioural problems in patients. Conclusions: The design and variation in methodology of most studies reviewed limits the general- ization of reported data. Further research is required to fully identify both common and individual needs of family carers of the head-injured. Introduction Head-injury presents a major problem within the western world, with an estimated 2.2 annual hospital admissions for traumatic head injury (TBI) for every 1000 people of the population [1]. In the UK, it is estimated that 5.2 out of every 10 000 people suffer a serious head injury each year [2]. It has been suggested that the true incidence of injury is even greater, as ¹ 20% of head-injured individuals die prior to admission to hospital [3]. In contrast to dementia or stroke, head-injury has been observed to be predo- minately a problem of younger age groups. This poses particular challenges for patient rehabilitation and family coping and adaptation, as carers are frequently required to give a life time’s care and support for relatives who would otherwise be independent [4]. The head-injury group in the US primarily includes individuals of 16± 35 years [5]. In a British study, Flanagan [4] stated that head injury occurs mainly in young people in the age range 17± 25 years. In addition, there appears to be an association between cause of injury and patient age. Two studies based on head-injured patients from Astley Ainslie Hospital in Edinburgh noted that injuries Brain Injury ISSN 0269± 9052 print/ISSN 1362± 301X online # 2001 Taylor & Francis Ltd http://www.tandf.co.uk/journals DOI: 10.1080/02699050010025759 Correspondence to: Indrani Sinnakaruppan, Department of Psychology, Douglas Grant Rehabilitation Centre, Ayrshire Central Hospital, Irvine, Ayrshire, Scotland KA12 8SS. BRAIN INJURY, 2001, VOL. 15, NO. 8, 653± 672 Brain Inj Downloaded from informahealthcare.com by Tufts University on 11/12/14 For personal use only.

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Page 1: Family carers and the adult head-injured: a critical review of carers' needs

Subject reviewFamily carers and the adult head-injured: a

critical review of carers’ needs

INDRAN I SINN AKARUP PAN and

DE NISE M . W IL LIAM S

Department of Psychology, Douglas Grant Rehabilitation Centre, Ayrshire CentralHospital, Irvine, Ayrshire, Scotland

(Received 11 September 2000; accepted 18 November 2000 )

Primary objective: To appraise recent literature on the topic of perceived needs of family carers of head-injured adult relatives. MEDLINE (1966± 2000), EMBASE PSYCHIATRY (1987± 1999), CINAHL(1982± January 2000) and PSYCHLIT (1967± 1999) databases were searched.Main outcomes and results: A total of 13 papers were reviewed, of which six employed standardizedresearch methods. The remainder used researcher developed questionnaires. Needs described by carersas important were predominantly related to information. Most unmet needs were linked to theprovision of emotional support. There were significant differences in the perceived needs and theirfulfilment between parental and spousal carers. In addition, unfulfilled needs could be predicted bybehavioural problems in patients.Conclusions: The design and variation in methodology of most studies reviewed limits the general-ization of reported data. Further research is required to fully identify both common and individualneeds of family carers of the head-injured.

Introduction

Head-injury presents a major problem within the western world, with an estimated2.2 annual hospital admissions for traumatic head injury (TBI) for every 1000 peopleof the population [1]. In the UK, it is estimated that 5.2 out of every 10 000 peoplesuffer a serious head injury each year [2]. It has been suggested that the trueincidence of injury is even greater, as ¹ 20% of head-injured individuals die priorto admission to hospital [3].

In contrast to dementia or stroke, head-injury has been observed to be predo-minately a problem of younger age groups. This poses particular challenges forpatient rehabilitation and family coping and adaptation, as carers are frequentlyrequired to give a life time’s care and support for relatives who would otherwisebe independent [4]. The head-injury group in the US primarily includes individualsof 16± 35 years [5]. In a British study, Flanagan [4] stated that head injury occursmainly in young people in the age range 17± 25 years. In addition, there appears tobe an association between cause of injury and patient age. Two studies based onhead-injured patients from Astley Ainslie Hospital in Edinburgh noted that injuries

Brain Injury ISSN 0269± 9052 print/ISSN 1362± 301X online # 2001 Taylor & Francis Ltdhttp://www.tandf.co.uk/journals

DOI: 10.1080/02699050010025759

Correspondence to: Indrani Sinnakaruppan, Department of Psychology, Douglas GrantRehabilitation Centre, Ayrshire Central Hospital, Irvine, Ayrshire, Scotland KA12 8SS.

BRAIN INJURY, 2001, VOL. 15, NO. 8, 653 ± 672

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could equally be attributed to either Road Traffic Accidents (RTA) or falls [6, 7].Younger patients had typically sustained head-injury in an RTA, whilst olderpatients could attribute their injury to a fall. Tennant [8] reported that age, gender,social and economic aspects of an area can contribute to variations in regional figuresof head-injury incidence.

Family carers are defined as those people who are related to a head-injuredindividual and perform a major unpaid caregiving function. Within the head-injured population, the majority of caring activities are undertaken by family mem-bers [5]. As the victims of head-injury are predominantly young males, the keyresponsibility for their care falls mainly upon their mothers and wives. The needsexpressed by these carers are multiple, and a number of studies have examined these,their relative degree of associated importance, and whether these needs are fulfilled.

Needs of family carers of head-injured relatives

Mauss-Clum and Ryan [9] conducted a pilot evaluation of 30 US family carers’needs at the time of injury. Priority needs were identified as clear explanations oftheir relative’s condition and discussion of a realistic prognosis for that person. Thestudy succeeds in highlighting key areas for further research. As head injury is oftenlong term in effect, it is important to evaluate carers’ needs after the initial crisis ofinjury occurrence.

Campbell [10] assessed the needs of 14 US carers of the head-injured andidentified a number of key problems. Within the psychological category, all ofCampbell’s carers expressed a need to feel there is hope’, and 93% (n ˆ 13) to`know what the future held for their relatives’. The `most important’ social needlisted was to have time and activities for myself outside the house’, whilst the mostcommonly expressed educational needs were to learn the effects of head injury’, tolearn about community resources’ and to have questions answered honestly’. Alsoof importance within the educational category was the need to obtain informationabout financial assistance’ . Undoubtedly, Campbell demonstrated the multiplicity ofcarers’ needs, but the study is limited by a poor response rate (19%), small samplesize (n ˆ 14), insufficient demographic information, non-standardized methods,descriptive approach and biased sample population.

The approach of Grant and Bean [11] to a similar objective contrasts with thatdescribed by Campbell [10]. These authors also explored the needs of informalcarers of the head-injured in a US population. However, rather than employ thesame method, these authors elected to derive a questionnaire from the NeumanSystems Model proposed by Betty Neuman in 1989 [41]. Grant and Bean adoptedthe model as a basis to classify carers’ needs as intrapersonal, interpersonal or extra-personal stressors. They reduced the number of system variables to three and termedthem physiological, psychosociocultural and spiritual. The physiological variablewas interpreted as relating to bodily structure and function, whereas the psychoso-ciocultural variable referred to economics, mental processes, relationships and socialand cultural functions, and the spiritual variable represented belief systems. Withinthis study, the authors defined each category of stressor as follows: Intrapersonalstressors were those needs that are internal factors impacting upon physiological,psychosociocultural, or spiritual homeostasis’; interpersonal stressors were consid-ered to be needs that occured outside the caregiver’s environment at a proximalrange that impacted upon physiological, psychosociocultural or spiritual homeo-

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stasis’. The term proximal indicated relationships between the carer and patient orother family and friends. Extrapersonal stressors were `needs occuring outside theinformal caregiver’ s environment at a distal range’ that influenced the regulation ofthe three variables; the term distal referred to relationships between the carer andgroups, communities or material resources. The authors stated that experts in theuse of the Neuman Systems Model confirmed the validity of their questionnaire.

Using this approach, Grant and Bean [11] tested 84 informal carers and identified110 different needs. Within the intrapersonal group, the needs expressed mostfrequently by carers were time for self ’ (21%) and time for social activities’(8%). This is in agreement with Campbell [10] in which 78% of subjects felt theyneeded to have time and activities for themselves outside the house’ . There appearsto be a large discrepancy in the actual proportions of carers indicating these needs.This may have reflected differences in sampling or methodologies used. Althoughboth samples were recruited from head-injury foundations, Grant and Bean can-vassed for subjects by mail survey of membership lists, whereas Campbell attendedsupport group meetings for volunteers; Campbell also provided questionnaires forrelatives of group participants. Within Campbell’s 28-item Questionnaire, only 17questions related to carers’ needs. In contrast, Grant and Bean’s survey identified110 needs, but failed to reveal details of the questions posed.

Similarly, both studies highlighted carers’ concerns over the future welfare of thepatient. In the Grant and Bean study, this is described in terms of assurance ofpatient care’ in circumstances of the carer’s death or disability, whereas the ques-tionnaire utilised by Campell lists the need as to know what the future holds for myrelative’. This is representative of a further problem in comparing studies withsimilar aims but using different methods to obtain data, i.e. different wording inthe questionnaires may have influenced interpretation by carers, thereby influencingtheir answer. Again, discrepancies were found in the actual proportions of carersexpressing the need, 93% (13 people) of Campbell’s carers versus Grant and Bean’s7% (six people).

The most commonly occuring interpersonal stressors within the more recentstudy [11] were the need for support groups (26%) and friends to assist with house-keeping tasks (8%). It appears that the majority of needs expressed in Grant andBean’s sample group lay within the extrapersonal category. These were needs forrespite care (26%), financial support for physical care of the patient (19%), day careprogrammes for physical needs (15%), day care programmes for psychosocioculturalneeds (15%), transportation services (14%), information about head injury (13%),information about psychosociocultural care of the patient (11%), individuals to carefor patients (10%), and financial support for psychosociocultural care (10%). This isin agreement with Campbell [10] in terms of the commonly expressed concern foreducation regarding head injury and its care. Day care programmes and respite careas specifics were not addressed by Campbell’s questionnaire, but an indication oftheir need may be represented in the requirement by all carers to learn more aboutcommunity resources. Overall, the two studies present a broadly similar picture ofthe needs of family carers of the head-injured.

The Neuman Systems Model was also utilised in a study by Jones [12], in whichthe stressors of 23 primary carers of head-injured relatives were identified andcompared with their levels of stress. In this Canadian trial, the authors classifiedall items on the Appraisal Caregiving Scale (Oberst 1992, personal communication

Family carers and the adult head-injured 655

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to Jones) in terms of intra-, inter- or extrapersonal stressors using Neuman’s defini-tions. Jones then identified carers’ needs by applying the categorized scale.

Results showed that intrapersonal stressors were feeling the situation was stress-ful, feelings about oneself, personal growth, the effect on life-style, worry aboutdoing things, fear regarding own physical health and each day becoming moremeaningful’. The interpersonal stressors revealed were independence, relationshipswith friends and family, the closeness of relationships with family, friends and others,relationship with the person needing care, and worry about the ability to help theperson in the future’ . These were found to have the highest correlation with carerstress levels measured by the Burden Interview [13]. Extrapersonal stressors werethe discovery of previous unfamiliar resources and the fear of not having energy andendurance in the future’ . A direct comparison of Jones’ results cannot be made witheither Campbell’s [10] or Grant and Bean’s [11] study, as different methods havebeen used, however some common themes emerge.

Concerns regarding the patient’s future care were highlighted in all three studies,although Jones classified this need as an interpersonal stressor, Grant and Beandescribed it as an intrapersonal stressor. A second common concern was that regard-ing the identification or realization of new resources or supports. This is defined asseveral different needs, with Grant and Bean [11] including respite care, day careprogrammes and availability of specific information. Both Jones [12] and Campbell[10] investigated broader more generalized needs such as community resourceavailability [10] and the discovery of new resources [12]. Campbell and Jonesused 28 and 27 item questionnaires, respectively.

In 1993, Acorn [14] published the results of a study designed to investigate theneeds of carers of head-injured survivors and the effectiveness of family supportgroups in meeting these needs. The needs of 42 carers in the British Columbiaregion of Canada were assessed using a modified version of Campbell’ s question-naire. The questionnaire was divided into two sections, the first of which comprised22 items largely concerned with the elucidation of demographic information, situa-tional influences and causes for worry regarding the care of the patient. The secondpart of the questionnaire identified three broad categories of needs, i.e. educational,psychological and stress management. This mainly differs from Campbell’s originalpaper in classification of the needs. Acorn’s results proved similar to those reportedby other groups [10± 12]. As Acorn [14] and Campbell [10] used similar question-naires, their results can be more readily compared. Both studies demonstrated similarresults, as indicated in table 1.

From table 1, the proportions of carers indicating a particular need as importantappear very similar, with the exception of obtaining information about financialassistance and guidance of the family in communication skills. A higher percentageof Campbell’s group rated the need for the former; whether this bears any relationto the socio-economic status of the subjects is unclear, as this information was notreported. Interestingly, the majority of Acorn’s carers (45.2%) earned less than$20 000 per annum, although this is not necessarily an indication of the householdwealth prior to the head-injury. Despite a few minor variations, the two studies arefundamentally supportive in their findings.

Carers’ concern over patients’ future has also been demonstrated by Knight et al.[15] in a study of 52 New Zealand carers. Carers were assessed by a 30 item CareBurden Scale developed by Knight et al. [16]. The results showed that carers hadparticular worries over the future of their head-injured relative, 77% (n ˆ 40) felt

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worried about their patient, and 73% (n ˆ 38) were fearful of the future for theirrelative. Despite the high proportion of female patients in the sample populationstudied (42.9% female patients, n ˆ 21), the results support the findings of Campbell[10], Grant and Bean [11] and Acorn [14]. Knight et al. [15] attempted to comparethe relative burdens of spousal and parental carers with regard to these particularproblems. Results revealed significant differences in pessimism and concern for thefuture. Parental carers were more distressed by this issue and also by physical burdenthan spousal carers. No other differences were found and the two groups weresimilar in overall burden, total number of needs/problems and distress levels.

In 1984, Mathis [17] examined whether the needs of family carers of the head-injured differed from those of carers whose relatives were critically ill but without anacute head injury. Fifteen subjects had critically ill relatives without head injury,whilst 11 subjects had critically ill family members with head injury. The instru-ment, developed by Molter [18], comprised a structured interview of 45 needsstatements which were rated in degrees of importance, thus allowing ranking offamily needs (the Critical Care Needs Inventory). Mathis’ results demonstrated thatthe importance rating’ of family needs differed significantly between carers ofcritically ill relatives with and without head-injury. However, it is pertinent tonote that a comparison of the non-head-injury group with a similar group reportedin a previous study [18] also revealed significant differences. Mathis explains this interms of different personal family needs. She does, however, also consider thepossible influence of sample, instrument and methodology.

Very little demographic data was reported for family members or their injuredrelatives. The study is also limited by the standard small sample size and biasedsample. Despite these limitations and statistical differences, Mathis [17] reveals asimilar theme throughout each of the test groups. More than half of the membersin both Mathis’ groups (head-injured versus critically ill) and Molter’s [18] group(critically ill) reported the same eight needs as important. These were to havequestions answered honestly’, to feel that hospital personnel cared about the rela-tive’, to know exactly what was done for the relative’ , to feel that there was hope’,

Family carers and the adult head-injured 657

Table 1. Frequency of needs rated as important by family carers

Needs [10] [14]

EducationalTo have questions answered honestly 100% 93%To learn about community resources 100% 93%To learn effects of head injury 100% 91%To learn methods to adjust to memory loss 64% 74%To learn methods of adjusting to behavioural changes 71% 74%To obtain information about financial assistance 93% 67%

PsychologicalTo know what the future holds for my relative 93% 95%To talk about my feelings 78% 81%To have emotional support 86% 90%To feel there is hope 100% 93%

Stress managementTo have time and activities for myself outside the home 83% 78%To guide our family in communication skills 57% 74%

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to have specific facts concerning the relative’ s progress’, reassurance that the bestcare possible was being given to the relative’ , to know they would be called athome if there were any changes in their relative’ s condition’ , and to receiveinformation about the relative’s condition at least once a day’ .

Mathis study was repeated by Engli and Kirsivali-Farmer [19] using a populationrecruited from different intensive care units within a large Canadian teaching hos-pital. In this instance, the same questionnaire (Molter’s Critical Care Family NeedsInventory) was completed within the subjects’ own time and returned by mail.Twenty-three relatives of critically ill patients without head injury and 22 familymembers of critically ill patients with head injury were recruited to the study. Onlysix (26%) of the non-head injury and eight (36%) of the head injury questionnaireswere returned, thus reducing the sample size considerably. Results confirmedMathis’ finding that significant differences exist in the importance rating’ of per-ceived family needs of families of the critically ill with and without head-injury.Despite this, five needs were perceived as important or very important by both testgroups, although they were ranked somewhat differently. These were: to be calledat home about the patient’s condition’ , to feel that the hospital personnel careabout the patient’ , to know how the patient is being treated medically’ , to haveexplanations that are understandable’, and to know specific facts concerning thepatient’s progress’. An information trend appeared to be recurrent throughout theimportant needs of all subjects. Most needs were reported by both test groups as met(78.5%) and those responsible were mainly clinical staff (>80%).

Although Engli and Kirsivali-Farmer [19] reinforce the previous result of Mathis[17], there are some discrepancies between the studies. The authors attributed theseto dissimilar data collection methods and demographic differences. The small samplesize of both studies limits the generalization of the results, as does the scarcity ofdemographic data. Moreover, both studies assessed only family members of acutehospitalized patients. It might be anticipated that family needs would evolve andbecome increasingly dissimilar between the two groups post-hospital discharge.Indeed, subsequent to the return of the patient to the home environment, familiesof severely head-injured relatives continue to experience chronic stress and psycho-logical distress [20± 22].

This issue has been addressed by Stebbins and Leung [23] in a study of 29 familycarers of head-injured relatives. Subjects were recruited from a number of Australianorganizations including Adult Day Activity Support Services, Family SupportGroups and Community Access Services. Family needs were assessed by theFamily Needs Questionnaire [24] with two minor modifications; a `not applicable’category was added to create a four point scale, and the term patient’ was sub-stituted with `my relative’. Needs were categorized in five different scales: medicalinformation, emotional support, instrumental support, professional support andsupport network. Questionnaires were distributed by key workers in target orga-nizations and returned by carers via the mail system.

Carers were divided into two groups based on duration of time post-injury.Group 1 comprised eight carers of relatives with a head-injury sustained within thelast 2 years; group 2 contained 21 carers of relatives with longer-term injuries.Results indicated that the importance ratings’ of family needs differed significantlybetween the two groups. In addition, significantly more needs remained unmetwith increased time post injury. Stebbins and Leung [23] concluded that familyneeds expanded from predominantly medical and professional support during the 2

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year post-injury period to include those based around community support, care-giver support, family support, financial resource and health information at laterstages. Thus, as time post-injury progressed carers’ needs rated as importantincreased in number and type. Conversely, the number of met needs decreaseddramatically. This serves to emphasize the problems that family carers face withcontinued time post-injury. Despite the clear contribution of this study, severallimitations exist. These include the small and biased sample, sparse patient andcarer demographic data, and the inclusion of some patients who had suffered addi-tional secondary brain injury subsequent to the primary trauma. In addition, theresponse rate to distributed questionnaires appears to be abnormally high at 83%.

Kreutzer et al. [25] reported that many needs of family carers of the head-injuredremain unfulfilled throughout the care period, leaving carers feeling isolated, mis-understood and without support. One hundred and nineteen US family carers ofhead-injured relatives were assessed by the Family Needs Questionnaire [24].Results demonstrated that the majority of needs rated by carers as importantwere classed as related to information and reassurance. The top three needs ratedas important (each with a 99% endorsement) were to have complete informationon the patient’s problems in thinking’ , to have questions answered honestly’, andto be assured that the best possible medical care is being given to the patient’.Interestingly, needs rated as unimportant were linked to the provision of practicaland emotional help and support specifically for the carer.

Although injury characteristics were not associated with fulfilment of needs,there appeared to be a correlation between perceived needs and carer incomeand gender. Female carers rated significantly more needs as important than theirmale counterparts. Subjects were assigned to one of two income groups, carersearning less than $40 000 per annum listed significantly more unmet needs thanthose earning at least this sum. As with most carers of head-injured relatives, mostwere described as the patient’s mother (39%) or wife (28%). Subjects were recruitedvia referrals to a Neuropsychological Department in a University Medical Centre.Within the patient population, there was considerable heterogeneity with respect toinjury severity and duration. At the time of this study, the Family NeedsQuestionnaire used did not have proven validity or reliability. A further limitationof this study is the proportion of black or other ethnic subjects, 75% of carersassessed were white. Therefore, the sample can be described as biased.

A similar study by Moules and Chandler [26] evaluated carer needs with the aimof recommending possible service improvements. Thirty-one carers were randomlyrecruited from eligible candidates within Northumberland in England. However,only 22 carers agreed to participate and, thus, the sample comprised 11 parents(eight mothers) and 11 spouses (five wives). The patient population was hetero-geneous with regard to injury severity and chronicity. Various standardized scaleswere used to measure carers’ psychiatric health, marital relationship and quality oflife (see table 2). Family needs were assessed by the Family Needs Questionnaire[24]. Results were generally supportive of Kreutzer et al. [25] and demonstrated thatmost needs frequently rated as important were from the health information subscale.The top 10 important needs reported by carers are listed in table 2. The single mostfrequently cited important need was to have questions answered honestly’ .

In agreement with Kreutzer et al. [25], the authors note that carers’ priorityneeds are related to their injured relative rather than issues concerning their ownsupport. The majority of satisfied needs were also of a health information nature. In

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ings

(78%

)

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etim

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r

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elf

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ide

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e(7

8%

)

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arn

the

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of

adju

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g

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ange

s(7

1%

)

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in I

nj D

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oade

d fr

om in

form

ahea

lthca

re.c

om b

y T

ufts

Uni

vers

ity o

n 11

/12/

14Fo

r pe

rson

al u

se o

nly.

Page 9: Family carers and the adult head-injured: a critical review of carers' needs

Family carers and the adult head-injured 661[1

1]

84

US

care

rs.

Ques

tionnai

redev

ised

by

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freq

uen

tin

trap

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)Sm

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odel

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ethod.

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tion

of

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ng

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(8%

)D

escr

iptive

appro

ach.

aver

age

7.8

yea

rs.

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contr

ol

gro

up.

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freq

uen

tin

terp

erso

nal

nee

ds:

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support

groups

(26%

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frie

nds

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sist

with

house

-kee

pin

gta

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(8%

)

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uen

tex

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erso

nal

nee

ds:

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ohav

ere

spite

care

(26%

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hav

efinan

cial

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for

phys

ical

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pat

ient

(19%

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visio

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day

care

pro

gram

mes

for

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ds

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day

care

pro

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mes

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ds

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tran

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atio

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4%

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form

atio

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out

hea

din

jury

(13%

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form

atio

nab

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psy

cho-

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pat

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for

pat

ients

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efinan

cial

support

for

psy

cho-

soci

ocu

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reof

pat

ient

(10%

)

[12]

23

Can

adia

nca

rers

.R

ecru

ited

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isal

Car

egiv

ing

Sca

leIn

trap

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stre

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e:B

iase

dsa

mple

.via

thre

eag

enci

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g(O

ber

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per

sonal

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ling

the

situ

atio

nw

asst

ress

ful

Sm

all

sam

ple

size

.se

rvic

esto

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rsof

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hea

d-

com

munic

atio

nto

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about

ones

elf

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edm

ethod.

inju

red.

modifie

dby

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to°

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sonal

gro

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and

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rD

ura

tion

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ng

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clude

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gori

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ed°

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effe

cton

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styl

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phic

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rynot

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man

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din

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ach

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om

ing

more

mea

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gful

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ed

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in I

nj D

ownl

oade

d fr

om in

form

ahea

lthca

re.c

om b

y T

ufts

Uni

vers

ity o

n 11

/12/

14Fo

r pe

rson

al u

se o

nly.

Page 10: Family carers and the adult head-injured: a critical review of carers' needs

662 I. Sinnakaruppan and D. M. WilliamsT

able

2.

Con

tinu

ed

Ref

eren

ceSam

ple

Met

hod

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ults

Com

men

ts

Inte

rper

sonal

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ssors

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e:°

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enden

ce°

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atio

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ips

with

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and

fam

ily

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he

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ips

with

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ily,

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oth

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elat

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ith

per

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aper

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ver

yof

pre

vious

unfa

milia

rre

sourc

es°

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rof

not

hav

ing

ener

gyan

den

dura

nce

inth

efu

ture

[14]

42

Can

adia

nca

rers

.Q

ues

tionnai

redev

ised

by

Eig

ht

most

com

monly

report

edB

iase

dsa

mple

.R

ecru

ited

via

mai

ling

list

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rnbas

edon

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pbel

l’s

import

ant

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nee

ds:

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all

sam

ple

size

.of

aH

ead

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ryA

ssoci

atio

n.

[10]

ques

tionnai

re.

°T

oknow

what

the

futu

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sN

on-s

tandar

diz

edm

ethod.

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esse

d1±17

year

spost

-inju

ryfo

rin

jure

dre

lative

(95%

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oco

ntr

ol

gro

up.

(ave

rage

6ye

ars)

To

hav

eques

tions

answ

ered

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ori

tyof

pat

ients

(64.3

%)

hones

tly

(93%

)had

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nca

red

for

athom

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lear

nab

out

com

munity

for

<5

year

s.re

sourc

es(9

3%

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feel

ther

eis

hope

(93%

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lear

nef

fect

sof

hea

d-i

nju

ry(9

1%

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hav

eem

oti

onal

support

(90%

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hav

etim

ean

dac

tivi

ties

for

self

outs

ide

the

hom

e(8

3%

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talk

about

my

feel

ings

(81%

)

Bra

in I

nj D

ownl

oade

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om in

form

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lthca

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om b

y T

ufts

Uni

vers

ity o

n 11

/12/

14Fo

r pe

rson

al u

se o

nly.

Page 11: Family carers and the adult head-injured: a critical review of carers' needs

Family carers and the adult head-injured 663[1

7]

26

US

care

rs.

Str

uct

ure

din

terv

iew

Sig

nific

ant

diffe

rence

sin

the

Sm

all

sam

ple

size

.15

rela

tive

sof

critic

ally

ill

in-

dev

eloped

by

Molter

[18],

import

ance

rating

of

per

ceiv

edP

atie

nt

and

subje

ctdem

o-

pat

ients

with

hea

din

jury

.C

riti

cal

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eN

eeds

Inven

tory

fam

ily

nee

ds

of

fam

ilie

sof

the

grap

hic

dat

anotre

port

ed.

11

rela

tive

sof

critic

ally

ill

in-

Ðim

port

ance

rati

ng

of

the

critic

ally

ill

with

and

without

Pat

ients

hosp

ital

ized

,no

pat

ients

witho

ut

hea

d-i

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fam

ily

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ds.

hea

d-i

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hom

eca

re.

40

rela

tive

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nific

ant

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epost

-tra

um

a/in

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ients

witho

ut

hea

d-i

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port

ance

rating

of

per

ceiv

eduncl

ear.

from

apre

vious

study

[18].

fam

ily

nee

ds

of

fam

ilie

sof

the

Tim

ing

of

asse

ssm

ent

critic

ally

ill

wit

hout

hea

d-i

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ear,

retr

osp

ective?

bet

wee

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athis’

and

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atie

nt

hosp

ital

ized

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ute

studie

s.phas

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-at

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ter

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ie-

8nee

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edby

all

thre

ete

stnt’s

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e.gr

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asim

port

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ered

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ofe

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ital

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out

the

rela

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oknow

exac

tly

what

was

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for

the

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ofe

elth

atth

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hope

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esp

ecific

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nce

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gre

ss°

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ssura

nce

that

the

bes

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ng

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the

rela

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they

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called

athom

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ther

ew

ere

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ges

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nditio

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rmat

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red

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ds

of

all

subje

cts.

Con

tinue

d

Bra

in I

nj D

ownl

oade

d fr

om in

form

ahea

lthca

re.c

om b

y T

ufts

Uni

vers

ity o

n 11

/12/

14Fo

r pe

rson

al u

se o

nly.

Page 12: Family carers and the adult head-injured: a critical review of carers' needs

664 I. Sinnakaruppan and D. M. WilliamsT

able

2.

Con

tinue

d

Ref

eren

ceSam

ple

Met

hod

Res

ults

Com

men

ts

[19]

14

US

care

rs.

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tica

lC

are

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ds

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nific

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rence

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all

sam

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.8

rela

tives

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tory

[18],Ð

import

ance

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of

per

ceiv

edP

atie

nt

and

subje

ctdem

o-

pat

ients

with

hea

din

jury

.im

port

ance

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of

fam

ily

nee

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of

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ilie

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phic

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anotre

port

ed.

6re

latives

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critic

ally

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in-

fam

ily

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ds.

critic

ally

ill

with

and

without

Tim

epost

-tra

um

a/in

jury

pat

ients

witho

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d-i

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ry.

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d-i

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uncl

ear.

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ing

of

asse

ssm

ent

un-

5nee

ds

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eper

ceiv

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import

ant

clea

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trosp

ective?

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ver

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port

ant

by

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test

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ient

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ital

ized

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ups:

phas

eonly

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consider

-at

ion

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nee

ds

afte

rpat

To

be

called

athom

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out

the

ient’

sre

turn

tohom

e.pat

ient’s

conditio

To

feel

that

the

hosp

ital

per

sonnel

care

about

the

pat

ient

°T

oknow

how

the

pat

ient

isbei

ng

trea

ted

med

ical

ly°

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hav

eex

pla

nat

ions

that

are

under

-st

andab

le°

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know

spec

ific

fact

sco

nce

rnin

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epat

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pro

gres

s

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info

rmat

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tren

dap

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red

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recu

rren

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roughout

the

import

ant

nee

ds

of

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subje

cts.

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nee

ds

report

edby

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groups

asm

et(7

8.5

%).

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nee

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edby

both

groups

asm

etby

clin

ical

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f(>

80%

).

Bra

in I

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form

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om b

y T

ufts

Uni

vers

ity o

n 11

/12/

14Fo

r pe

rson

al u

se o

nly.

Page 13: Family carers and the adult head-injured: a critical review of carers' needs

Family carers and the adult head-injured 665[2

3]

Tota

l29

Aust

ralian

care

rs.

Fam

ily

Nee

ds

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tionnai

reSig

nific

ant

diffe

rence

sin

import

ance

Sm

all

sam

ple

num

ber

.8

care

rsof

rela

tives

of

hea

d-i

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ry[2

4]

with

two

min

or

modifi-

ratings

of

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nee

ds

bet

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nB

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dsa

mple

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cations;

not

applica

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asca

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rela

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ith

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care

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ith

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>2

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ries

>2

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s.In

clusi

on

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som

epat

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cts

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uit

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om

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nific

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onal

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tion

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ple

ted

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tionnai

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retu

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ude

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by

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ally

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d0.6

±27.9

year

spost

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support

,fa

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cial

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sourc

ean

dhea

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info

rmat

ion

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ol

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at>

2yea

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[25]

119

US

care

rs.

Fam

ily

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ds

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tionnai

re3

most

import

ant

nee

ds:

Bia

sed

sam

ple

.R

ecru

ited

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refe

rral

sfo

r[2

4]Ð

fam

ily

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ds,

impor-

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eco

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form

atio

nD

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ropsy

cholo

gica

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and

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on

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ms

inth

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gre

port

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ata

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ersity

med

ical

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e.(9

9%

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us

pat

ient

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d0.2

±95.7

month

spost

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gro

up

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regar

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ry(a

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15.9

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hones

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)in

jury

To

be

assu

red

that

the

bes

tposs

ible

No

contr

ol

gro

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ical

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isbei

ng

give

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(99%

)

3nee

ds

most

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uen

tly

rate

das

met

To

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red

that

the

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tposs

ible

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ical

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ng

give

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the

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To

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eques

tions

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ered

hones

tly

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rent

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ree

on

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ayto

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)

Con

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ed

Bra

in I

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ufts

Uni

vers

ity o

n 11

/12/

14Fo

r pe

rson

al u

se o

nly.

Page 14: Family carers and the adult head-injured: a critical review of carers' needs

666 I. Sinnakaruppan and D. M. WilliamsT

able

2.

Con

tinue

d

Ref

eren

ceSam

ple

Met

hod

Res

ults

Com

men

ts

3nee

ds

most

freq

uen

tly

rate

das

not

met

To

discu

ssfe

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gsab

out

the

pat

ient

wit

hso

meo

ne

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sam

eex

per

ience

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hav

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the

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hav

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par

ing

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t(3

4%

)

Corr

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wee

nnee

ds,

care

rgen

der

and

inco

me

but

not

with

inju

rych

arac

teri

stic

s

[26]

22

Bri

tish

care

rs.

Sch

edule

of

Eval

uat

ion

of

Most

nee

ds

freq

uen

tly

rate

das

Sm

all

sam

ple

size

.R

ecru

ited

random

lyfr

om

elig

ible

Indiv

idual

Qual

ity

of

LifeÐ

import

ant

wer

ere

late

dto

hea

lth

Dura

tion

of

hom

eca

renot

subje

cts

inN

ort

hum

ber

land.

Dir

ect

Wei

ghting

[29]Ð

info

rmat

ion.

report

ed.

Ass

esse

d20

month

s±17

yea

rspost

-qual

ity

of

life

.T

he

maj

ori

tyof

fulfille

dnee

ds

wer

eN

oco

ntr

ol

group.

inju

ry(a

vera

ge6

year

s).

Golo

mbok

[30]Ð

rela

tionsh

ipco

nce

rned

with

hea

lth

info

rmat

ion.

Het

eroge

neo

us

pat

ient

3pat

ients

lived

separ

atel

yfr

om

satisf

action.

The

maj

ori

tyof

unfu

lfille

dnee

ds

wer

egr

oup

with

regar

dto

care

rs(1

3.6

%).

Gen

eral

Hea

lth

Ques

tionnai

rere

late

dto

the

pro

visio

nof

support

.in

jury

seve

rity

and

dura

-28

[31]±

psy

chia

tric

morb

idit

y.46%

of

nee

ds

rate

das

import

ant

wer

etion.

Fam

ily

Nee

ds

Ques

tionnai

redes

crib

edas

bei

ng

met

.R

andom

ized

sam

ple

sele

ct-

[24]Ð

fam

ily

nee

ds,

import

-T

her

ew

asa

signific

ant

asso

ciat

ion

ion.

ance

and

fulfilm

ent.

bet

wee

na

low

inci

den

ceof

met

Auth

ors

concl

ude

anin

div

-nee

ds,

or

hig

hin

ciden

ceof

unm

etid

ual

appro

ach

tonee

ds,

and

hig

hsc

ore

son

the

asse

ssm

ent

of

care

rnee

ds

Gen

eral

Hea

lth

Ques

tionnai

re.

ispre

ferr

ed.

The

10

most

freq

uen

tly

report

edim

port

ant

nee

ds

wer

e:°

To

hav

eques

tions

answ

ered

hones

tly

(100%

)

Bra

in I

nj D

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d fr

om in

form

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Page 15: Family carers and the adult head-injured: a critical review of carers' needs

Family carers and the adult head-injured 667°

To

be

show

nth

atm

edic

al,

educa

tional

or

rehab

ilitat

ion

staf

fre

spec

tth

epat

ient’

snee

ds

or

wishes

(95%

To

be

told

about

all

chan

ges

inth

epat

ient’s

med

ical

stat

us

(95%

To

hav

eex

pla

nat

ions

from

pro

-fe

ssio

nal

sgi

ven

inunder

stan

dab

lete

rms

(95%

To

hav

ea

pro

fess

ional

totu

rnto

for

advi

ceor

serv

ices

when

the

pat

ient

nee

ds

hel

p(9

5%

To

hav

eco

mple

tein

form

atio

non

the

pat

ient’

spro

ble

ms

inth

inkin

g(9

5%

To

hav

eco

mple

tein

form

atio

non

the

pat

ient’s

phys

ical

pro

ble

ms

(95%

To

be

told

how

long

each

of

the

pat

ient’s

pro

ble

ms

isex

pec

ted

tola

st(9

5%

To

be

assu

red

that

the

bes

tposs

ible

med

ical

care

isbei

ng

give

nto

the

pat

ient

(91%

)

[27]

180

US

care

rs.

Neu

robeh

avio

ura

lFunct

ion-

Nee

ds

outc

om

epre

dic

tors

diffe

rfo

rB

iase

dsa

mple

.R

ecru

ited

from

ale

vel

Itr

aum

ain

gIn

vento

ry[3

2]Ð

care

rpar

ents

and

spouse

s.D

ura

tion

of

hom

eca

rece

ntr

e.ra

ting

of

pat

ients

’neu

ro-

Car

ers’

ratings

of

the

pat

ients

’neu

ro-

not

report

ed.

Ass

esse

d6

month

s±1

yea

rpost

-beh

avio

ura

lst

atus.

beh

avio

ura

lst

atus

isa

good

No

contr

ol

group.

inju

ry(a

vera

ge

28

month

s).

Auditory

Ver

bal

Lea

rnin

gpre

dic

tor

of

fam

ily

nee

ds.

Com

pre

hen

sive

appro

ach.

Tes

t[3

3].

Neu

ropsy

cholo

gic

alte

sts

are

not

good

Blo

ckD

esig

n,

Wec

hsler

pre

dic

tors

of

fam

ily

nee

ds.

Adult

Inte

llige

nce

Sca

leT

ime

since

inju

ryan

ddura

tion

of

Rev

ised

[34].

com

aar

enot

stro

ng

pre

dic

tors

Com

ple

xFig

ure

Tes

t,co

py

of

fam

ily

nee

ds.

and

3m

inute

reca

ll[3

5].

Pat

ient,

fam

ily

and

inju

rych

arac

teri

stic

s

Con

tinue

d

Bra

in I

nj D

ownl

oade

d fr

om in

form

ahea

lthca

re.c

om b

y T

ufts

Uni

vers

ity o

n 11

/12/

14Fo

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rson

al u

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Page 16: Family carers and the adult head-injured: a critical review of carers' needs

668 I. Sinnakaruppan and D. M. WilliamsT

able

2.

Con

tinu

ed

Ref

eren

ceSam

ple

Met

hod

Res

ults

Com

men

ts

Contr

olle

dO

ral

Word

are

not

suff

icie

nt

topre

dic

tA

ssoci

atio

n[3

6].

fam

ily

nee

ds.

Dig

itSpan

,fo

rwar

dan

dbac

k-

war

d,

Adult

Inte

llig

ence

Sca

leR

evis

ed[3

4].

Gro

oved

Peg

boar

d,

dom

inan

t[3

7].

Sim

ilar

itie

s,A

dult

Inte

llig

ence

Sca

leR

evised

[34].

Sym

bol

Dig

itM

odal

itie

sT

est,

wri

tten

and

ora

l[3

8].

Tra

ilM

akin

gT

est,

par

tsA

&B

[39].

Fam

ily

Nee

ds

Ques

tionnai

re[2

4]Ð

fam

ily

mem

ber

s’per

ceiv

ednee

ds.

[28]

65

Span

ish

care

rs.

Ques

tionnai

redev

ised

by

Per

ceiv

edch

anges

inbeh

avio

ur,

Sm

all

sam

ple

size

.R

ecru

ited

from

Hea

dIn

jury

Junque

etal

.[2

8]Ð

emotions

and

qual

ity

of

life

Non-s

tandar

diz

edm

ethod.

Ass

oci

atio

ns

and

vari

ous

chan

ges

inpat

ients

(as

inpat

ients

wer

est

rongly

ass-

Pat

ient

and

subje

ctdem

o-

Bar

celo

na

hosp

ital

s.per

ceiv

edby

care

rs)

and

oci

ated

with

care

rs’

nee

dfo

rgr

aphic

dat

asp

arse

.A

sses

sed

1±24

year

spost

-inju

ryca

rer

info

rmat

ion

nee

ds.

info

rmat

ion.

No

contr

ol

group.

(aver

age

6.2

year

s).

Dura

tion

of

hom

eca

reM

ail

surv

ey.

not

report

ed.

[15]

52

New

Zea

land

care

rs.

Car

eB

urd

enSca

lepre

vio

usly

77%

of

care

rsw

orr

ied

about

pat

ient.

Dura

tion

of

cari

ng

not

Rec

ruit

edfr

om

mem

ber

ship

sdev

eloped

by

Knig

ht

etal

.73%

of

care

rsw

ere

fear

ful

of

futu

re.

report

ed.

of

Hea

dIn

jury

Soci

etie

s.fo

rca

rers

of

peo

ple

with

Par

enta

lca

rers

wer

em

ore

distr

esse

dB

iase

dsa

mple

.A

sses

sed

on

aver

age

5.7

yea

rsm

ultip

lesc

lero

sis

[16]Ð

by

conce

rnfo

rfu

ture

and

phys

ical

Non-s

tandar

diz

edm

ethod.

(SD

ˆ4.5

5)

post

-inju

ry.

stra

inan

dpositi

veef

fect

sburd

enth

ansp

ousa

lca

rers

.of

cari

ng.

Bra

in I

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contrast, unmet needs were predominantly related to the provision of support; 46%of needs rated as important were described as being met. Moules and Chandler [26]found a significant relationship between a low incidence of met needs, or highincidence of unmet needs and high scores on the General Health Questionnaire.Thus, carers with many unmet needs tended to report lower quality of life andgreater psychiatric morbidity.

Although the study is well designed and implemented, the small sample size is alimitation. The authors conclude that an individual approach to assessment of carerneeds is the preferred route. Both Moules and Chandler [26] and Kreutzer et al. [25]raise the issue of the validity of self assessed carer needs as carers appeared to rateissues concerning their own emotional and practical support and coping as relativelyunimportant. As Moules and Chandler emphasize, this area warrants furtherresearch.

Serio et al. [27] investigated the variables involved in predicting family needs andwhether these were satisfied in a sample of 180 family carers of the head-injuredrecruited through a US Level I trauma centre. The majority of carers were female,and the sample constituted similar proportions of spouses (43%) and parents (36%).The effects of head injury were assessed by applying a combination of 13 neuro-psychological tests to injured individuals, as well as the NeurobehaviouralFunctioning Inventory (NFI). The NFI allows family carers to select a range ofdifferent symptoms to describe the patient’ s neurobehavioural status. The needsperceived by family carers and whether these were satisfied were measured usingthe Family Needs Questionnaire [24]. On average, 55% of needs were met, withthe highest satisfaction levels indicated in the Medical Information Scale. Only 19%of needs were described as unmet, and the majority of these (30%) were related toemotional support.

Regressional procedures were used to ascertain which variables were significantin predicting carers’ needs and whether these were satisfied. The NFI was found tobe the best and most consistent predictor of family needs in contrast to neuro-psychological testing. A strong association was reported between behavioural prob-lems in the head-injured relative and unmet needs in their family carer. Perhapsrather surprisingly, injury characteristics, including time since injury and duration ofcoma, were reported to be poor predictors of family needs.

A further significant finding of this study was the existence of differential pre-diction equations for parental and spousal carers of head injured relatives. For ex-ample, parents perceived more `met needs’ when they described their head-injuredrelative as suffering predominantly physical symptoms. In contrast, in the samesituation, spousal carers reported fewer met needs.

Although the study was large and well constructed, a number of limitationsexist. First, during the calculation of predictor variables in family needs, no signifi-cant or meaningful results were revealed. The sample was then categorized as parentor spouse, and 41 subjects who did not meet these criteria, e.g. unmarried partners,were deleted from the analysis, thus biasing the sample. In addition, no controlsample was included in the analysis. Moreover, the authors recommend that pre-morbid family functioning should be considered and assessment of family needs beperformed serially to identify changes in perceived needs over the course of time.

The association between needs, their satisfaction and behavioural problems inthe head-injured relative has also been demonstrated by Junque et al. [28].Moreover, many groups have highlighted the key role of information in family

Family carers and the adult head-injured 669

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needs. This study examined this area in relation to physical, cognitive, emotionaland quality of life changes perceived by 65 family carers in severely head-injuredrelatives. Carers were recruited through Head injury Associations and a number ofhospitals in Barcelona. Assessment was via a mail survey questionnaire devised byJunque et al. [28] with a 43% response rate. The questionnaire gauged a variety ofchanges in the patient as perceived by the family carer, as well as items pertaining tothe need for information.

Results showed that there was a correlation between patients’ emotional andbehavioural changes as well as changes in the patient’s quality of life and the needfor information on the consequences of head-injury. Junque et al. stressed theimportance of the provision of information specifically concerning emotional andbehavioural changes subsequent to head injury for family members. They arguedthat an increased comprehension of such changes would elicit greater adaptationwithin families. Limitations of the study relate to the small and biased sample,insufficient patient and carer demographic information and non-standardmethodology.

Conclusions

Although carers exhibit variation within their perceived needs and their relativepriorities, some common themes have emerged. The majority of subjects seem tohave emphasized the need for information regarding the head injury, its effects, andtechniques for adjusting to the subsequent changes in their injured relatives. Manycited a need for healthcare professionals to answer questions with honesty. A furthercommon major concern was for the future care of the head-injured person in theevent of carer disability or death. This worry does not appear to be specific to thehead-injured population and has been reported in other caregiver groups [40]. Themajority of carers also needed time for themselves outside the home, and manycarers also indicated a need for hope for the future.

Throughout the publications, the need for multiple facets of health informationis clearly demonstrated. In particular, information that specifically addresses beha-vioural, affective and quality of life changes within the head-injured person appearsto be especially important. Moreover, as Moules and Chandler [26] emphasized,further research is required to determine whether current methods of analyses revealan accurate representation of family needs. It may be pertinent to note that all 13studies reported needs perceived by carers themselves. In some studies, personalcarer support issues appear to be rated as relatively unimportant, rather the priority isfocused on the head-injured relative.

Although many important needs were identified, there were great variations inthe satisfaction of these needs. Significant differences in the fulfilment of needs werereported between parental and spousal carers. Overall, more unmet needs appearedto be associated with behavioural and affective change in the injured relative andincreased with the progress of time post-injury. It appears that, in some respects, thefamilies’ needs can be predicted, but not by neuropsychological testing or injurycharacteristics.

Perhaps, the overall common needs might be considered somewhat surprisinggiven that most of these studies used heterogeneous populations in terms of head-injured people and carers. Although significantly different needs were found infamily carers of the head-injured compared to carers of the critically ill without

670 I. Sinnakaruppan and D. M. Williams

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head-injury, similar differences were revealed within different groups of critically illpatients. The elucidation of trends within the needs of family carers of the adulthead-injured will allow service provision to address these as they change and expandthroughout the carers’ life post-injury. However, it is clear from a number ofdifferent studies that such an approach alone is insufficient and that carers’ needscan only be more fully accommodated by a combination of addressing commonthemes and the identification of individual family needs. Such information wouldallow improvements in services by local providers.

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nly.