Changing Family Needs After Brain Injury.

The impact of brain injury on family dynamics and functioning has been the subject of much research over the last three decades. Coping with the impact of acquired brain injury (ABI) is one of the most difficult tasks that can confront a family (Florian, Katz, & Lahav, 1989) and family members experience a wide range of needs as the injured person progresses through rehabilitation (Brooks, 1991).

Several early studies (Panting & Merry, 1972; Thomsen, 1972; Oddy, Humphrey, & Uttley, 1978) highlighted the emotional difficulties and stresses that family members experience in post-injury adjustment. Much familial distress was attributed to behavioral, cognitive, and personality changes in the brain-injured family member. Other researchers (Oddy, & Humphrey, 1980; McKinlay, et al. 1981; Thomsen, 1984) suggested a strong relationship between the severity of brain injury and the degree of emotional strain and disturbance experienced by the family in post-injury adjustment.

The Brooks, et al. (1986) study on the impact of brain injury from the viewpoint of relatives showed that relatives were under significantly greater stress at five years than at one year post-injury. The area that most caused stress was `disturbed behavior'. At five years post-injury, relatives reported experiencing increases in the incidence of disturbing/challenging behaviors (violence, verbal aggression, inappropriate social behaviors, dependency etc.) and a reduced ability to cope with the brain injured family member compared with their experience at one year post-injury.

This pattern of increasing stress and strain (as time since injury progresses) experienced by family members caring for a relative who has a brain injury seems different as compared to family adjustment patterns relating to other acquired disabilities. Florian et al.'s (1989) study of family adjustment in which families experienced either a spinal cord injury (SCI) or an acquired brain injury (ABI) to one of its members indicated that family members coping with SCI had better long-term adjustment outcomes than families coping with ABI. Florian et al. found the severity of injury and the magnitude of behavioral and personality change to be the best predictor of long-term family stress and strain, confirming earlier research (Oddy, & Humphrey, 1980; McKinlay, et al., 1981; Thomsen, 1984; Brooks et al., 1986) that linked the degree of severity of the brain injury, and subsequent personality and cognitive changes with the degree of psychological distress, burden and family dysfunction experienced among family members post injury.

In Australia, over 148,800 individuals have an ABI and receive support from a family member, such as a spouse, parent, child, or other relative (Australian Bureau of Statistics, 1993; Yeatman, 1996). Brooks, et al.'s. (1986) finding that family stress and burden increases over time suggests that family members `needs' and the degree to which they are met or not met may also change over time. In order to prevent family breakdown and caregiver burnout, assure timely service provision and utilize limited resources effectively, it is vital that the needs of families coping with brain injury be identified.

Family Needs Following Brain Injury

Maus-Clum and Ryan, (1981) Mathias, (1984), and Campbell (1988) have explored the needs of family members during adjustment to a relative's acquired brain injury. Maus-Clum and Ryan (1981) found that needs for accurate and kind communication with health professionals about both short and long term recovery, financial counseling, emotional support, and information about community resources were ranked high by relatives.

Mathias (1984) administered an adapted general trauma questionnaire to family members of critically ill relatives during acute hospitalization. The time at which the brain injured family members were interviewed post-injury was between approximately 0 and 4 months post-trauma. The key areas of concern for families related to the availability of professional and medical supports. In particular, the need for accurate information and communication with caring medical staff was ranked highly.

Campbell (1988) investigated the needs of relatives who participated in a brain injury support group and identified needs for information about community and financial resources, emotional support, and respite and recreation options. Overall, Campbell's research reinforces the premise that families coping with brain injury have specific needs and experience severe stress and strain.

While the Maus-Clum and Ryan (1981) and Campbell (1988) studies seem to suggest some consensus about the needs family members experience in the post acute/long-term rehabilitation process, neither Maus-Clum and Ryan (1981) nor Campbell (1988) provided any information regarding needs and time since onset of injury. The nature of the relationship between types of family needs identified and time since/post-injury (beyond acute hospitalization stage) remains unclear.

Family Needs During The Early Years After Brain Injury

Kreutzer, Serio, and Berquist (1994) and Serio, Kreutzer, and Gervasio (1995) used the `Family Needs Questionnaire' (FNQ) designed to measure family members' perceived needs after the brain injury of a relative, to investigate family needs. The FNQ (Kreutzer, 1988) contains 40 needs statements in which respondents rank each statement according to its perceived importance and degree to which the need is met or not met.

Kreutzer et al. (1994) found that family members considered the need for medical information and support from health professionals as most "Important". This is consistent with Mathias's (1984) earlier findings of family needs during acute hospitalization. The apparent similarity between family needs as indicated by Mathias (1984) in the first four months post-injury and needs families experience in the first couple of years post-trauma (Kreutzer et al. (1994) may be due to the long periods of hospitalization and inpatient rehabilitation that people with brain injury often experience. It is not unusual for an individual not to return to living with the family unit for 1 - 2 years (Oakey, 1992). While the emphasis on family needs rated as "Important" appear to focus on the acute hospitalization stage, it is interesting to note that "Important" need number ten (to be shown what to do when the patient is upset or angry) reflects a more long-term care issue. This supports Willer and Linn's (1993) finding that behavioral and emotional support are major needs for relatives caring for and living with a brain injured family member.

Needs perceived by family members to be "Not Important" (Kreutzer et al.'s 1994) included: help with housekeeping, supportive family members, and assistance from friends and relatives in providing care for the brain-injured family member. Kreutzer et al.'s (1994) finding that "help keeping house" and "support in caring" for the brain-injured family member were ranked as "Not Important" raise the possibility that the brain-injured family member was in some form of institutionalized care (e.g. hospital or inpatient rehabilitation) during the time of the study. Kreutzer et al. (1994) also noted that the respondents rated most "emotional support" type needs statements as "Not Important" (e.g. understanding spouse and family members, being reassured about strong negative feelings, expressing opinions to others, etc.) While this appears to contradict Maus-Clum and Ryan's (1981) and Campbell's (1988) view that emotional support was one of the most important needs, the apparent discrepancy between Kreutzer et al.'s (1994) and Maus-Clum & Ryan's (1981), and Campbell's (1988) research may be due to the differences in the time since onset of injury. Family response after sudden injury or illness often places high importance on obtaining information about the injured person's medical status and chances of recovery in the initial stages of hospitalization, with social and emotional supports only becoming more apparent as time post-injury progresses (Smeltzer & Bare, 1992). The need for information on community resources was also ranked highly in the studies conducted by Campbell (1988) and Maus-Clum and Ryan (1981) but did not appear as "Important" in Kreutzer et al.'s (1994) study possibly because the brain-injured individual was in the hospital or inpatient rehabilitation.

Kreutzer et al.'s (1994) results demonstrated that many "Important" and "Met" needs reflect the hospitalization/medical or acute stage of rehabilitation (as is consistent with the mean onset of 15.9 months earlier). On the other hand, the needs identified by Maus-Clum and Ryan (1981) and Campbell (1988), such as honest accurate communication with health professionals, a chance to talk about feelings and emotions, information on brain injury, financial planning, and community resources (not ranked highly in the Kreutzer et al. (1994) study) may be needs that family members experience `beyond' the early years after brain injury.

The current study investigated the changes in family needs over time using Kreutzer's FNQ. The finding that family burden and stress is greater at five years post-injury than at one year post-injury (Brooks, et al., 1986) leads to the hypothesis that increased burden and stress as time since injury progresses is related to changes in the nature and level of need. Specifically, the current study explored two aspects of family needs after brain injury.

(1) Changes in family needs as time since injury increases.

What needs do relatives caring for family members with brain injury beyond two years post-injury experience and do those needs differ in both importance and the degree to which they are met during the first two years post-injury? It was hypothesized that as time since injury progresses (beyond 2 years), needs ranked as "Important" would reflect long term care issues (help around the house, emotional support, community and financial resources, etc.).

(2) Changes in the level of unmet need as time since injury increases.

Do the need response patterns differ between families caring for a brain-injured relative during the first two years post-injury (Group 1) and families caring for an ABI relative beyond two years post-injury (Group 2)? Specifically, does the level of `not met' need increase as time since injury increases?

Method

Participants: The participants/respondents were 29 family members of 29 adult (18+ year old) relatives with an acquired brain injury. Family members included 9 mothers, 3 fathers, 10 wives (female partner), 2 husbands (male partner), 3 other male relatives (i.e. 2 brothers, 1 son), 2 other female relatives (i.e. 2 daughters).

Participants were recruited from Adult Day Activity Support Services, Community Access Services, Independent Living Skill Training Programs, and Family Support Groups where staff had contact with relatives of brain-injured individuals who were currently attending/involved in their agency/service. In each instance the participant was a family member who was a co-client of the agency/service (i.e. receiving counseling, support, training, etc.)

Key workers were asked to distribute the questionnaire only to those family members with whom they had direct contact. Also, key workers were requested to indicate that the research was independent of their agency and there would be no adverse consequences for participation or nonparticipation.

Instrument: The instrument used was the Family Needs Questionnaire (FNQ) developed by Kreutzer (1988). The reliability and validity (both content and construct) of the FNQ have been established by Camplair and Kreutzer (1989) and Serio, Kreutzer, and Witol (1997).

Two minor changes were made to the FNQ for this study. The category "Not Applicable" (NA) was added, creating a four-point scale (NA, met, partly met, not met). NA was added to allow response regarded as not relevant to their current situation. The term `patient' was also changed to read `my relative.' Accompanying the FNQ was a demographic data sheet requesting information on the time since injury and the respondent's relationship to their ABI relative (i.e., spouse, parent, etc.).

Procedure: Key workers from the support groups, community access, and independent living skill programs were asked to identify family members of ABI individuals currently involved in their service/agency and then distribute the family needs questionnaire to those family members who were interested in participating in the study. Relatives receiving the questionnaire were asked to return the questionnaire using a pre-paid, pre-addressed envelope. Thirty-five questionnaires were distributed with 29 returned for a response rate of 83%.

Results

The 29 returned questionnaires were divided into two groups based on duration of time since injury. Group I consisted of 8 respondents/family members who were living with and/or caring for a brain-injured relative during the first two years post trauma (N = 8, Mean = 1.28 years, SD = 0.5049, Var.=0.265, Range = 1.2 (0.6- 1.8)).

Group 2 consisted of 21 respondents/family members who were living with and/or caring for a brain-injured relative beyond the first two years post trauma (N = 21, Mean = 15.94 years, SD = 8.98, Variance = 80.72, Range = 25.10 (2.8 - 27.9)).

Rank Ordering Of Needs

The results of the two groups were rank-ordered to address the question of the needs of relatives caring for family members with brain injury beyond two years post-injury experience, and whether the needs differ in importance and degree to which they are met.

Items from the FNQ were ranked for each of the two groups (Group 1, 0-2 yrs post; Group 2, 2+ yrs post) to determine the relative importance of individual needs and the extent to which these needs were perceived as met. Table 1 lists the top 20 needs for Group 1 rated "Important/Very Important" as well as the degree to which each need was perceived as being met. Table 2 lists the top 20 needs for Group 2 rated "Important/Very Important" as well as providing information about the degree to which each need was perceived as being met.

Table 1. Group 1 (0-2 years post injury n=8) FNQ top twenty reported needs Important/Very Important and the degree to which they were rated Met

                                                        Important/
                                                           Very
                                                        Important %
                    I Need ....                        Endorsement

To be told about all changes in my                        100.0
relative's medical status

To have different professionals agree on                  100.0
the best way to help my relative

To have complete information on the                       100.0
medical care of traumatic injuries

To be assured that the best possible                      100.0
medical treatment is being given to
my relative

To have explanations from professionals                   100.0
given in terms I can understand

To have my questions answered honestly                    100.0

To have enough resources for my relative                  100.0
(e.g. rehabilitative programs, counselling)

To have a professional to turn to for                     100.0
advice when my relative needs help

To have complete information on my                        100.0
relative's physical problems

To be told how long each of my relative's                 100.0
problems are expected to last

To have information on my relative's                      100.0
rehabilitative or educational progress

To get enough rest or sleep                               100.0

To have other family members understand                   100.0
my relative's problem

To be told why my relative acts different,                100.0
difficult or strange

To be shown that medical, educational or                   87.5
rehabilitation staff respect my relative's needs
or wishes

To be shown that my opinions are used in planning          87.5
my relative's treatment, rehabilitation or education

To have help in deciding how much to let my                87.5
relative do by himself/herself

To be told if I am making the best possible                87.5
decisions about my relative

To discuss my feelings about my relative with              87.5
other friends and family

To be shown what to do when my relative is acting          87.5
strange or upset

                                                          Met %
                    I Need .....                       Endorsement

To be told about all changes in my                         62.5
relative's medical status

To have different professionals agree on                   62.5
the best way to help my relative

To have complete information on the                        50.0
medical care of traumatic injuries

To be assured that the best possible                       50.0
medical treatment is being given to
my relative

To have explanations from professionals                    50.0
given in terms I can understand

To have my questions answered honestly                     50.0

To have enough resources for my relative                   50.0
(e.g. rehabilitative programs, counselling)

To have a professional to turn to for                      37.5
advice when my relative needs help

To have complete information on my                         37.5
relative's physical problems

To be told how long each of my relative's                  25.0
problems are expected to last

To have information on my relative's                       25.0
rehabilitative or educational progress

To get enough rest or sleep                                25.0

To have other family members understand                    25.0
my relative's problem

To be told why my relative acts different,                 12.5
difficult or strange

To be shown that medical, educational or                   62.5
rehabilitation staff respect my relative's needs
or wishes

To be shown that my opinions are used in planning          50.0
my relative's treatment, rehabilitation or education

To have help in deciding how much to let my                50.0
relative do by himself/herself

To be told if I am making the best possible                37.5
decisions about my relative

To discuss my feelings about my relative with              37.5
other friends and family

To be shown what to do when my relative is acting          25.0
strange or upset

Table 2. Group 2 (2+ years post injury n=21) FNQ toy twenty reported needs Important/Very Important and the degree to which they were rated Met

                                                      Important/
                                                     Very Important
             I Need.....                             % Endorsement

To have my questions answered honestly                   100.0

To have a professional to turn to for                    100.0
advice when my relative needs help

To have enough resources for my relative                 100.0
(e.g. rehabilitative programs, counselling)

To have explanations from professionals                   95.9
given in terms I can understand

To be shown that medical, educational or                  95.2
rehabilitation staff respect my relative's needs
or wishes

To be told about all changes in                           95.2
my relative's medical status

To have complete information on the                       95.2
medical care of traumatic injuries

To have complete information on my                        95.2
relative's physical problems

To have enough resources for myself or                    95.2
the family (e.g. financial or legal counselling,
respite care, counselling, nursing or day care)

Help in getting over my doubts and fears about            95.2
the future

To have complete information on my relative's             90.5
problems in thinking (e.g. confusion, memory)

To be assured that the best possible medical              90.5
treatment is being given to my relative

To be shown that my opinions are used in                  90.5
planning my relative's treatment,
rehabilitation or education

To have other family members understand my                90.5
relative's problems

Help in remaining hopeful about the future                90.5

To have different professionals agree on the              90.5
best way to help my relative

To be told if I am making the best possible               90.5
decisions about my relative

To get a break from my problems and                       90.5
responsibilities

To have help from other members of the family             85.7
in taking care of my relative

To be shown what to do when my relative is acting         85.7
strange or upset

                                                        Met %
                 I Need.....                         Endorsement

To have my questions answered honestly                   42.9

To have a professional to turn to for                    23.8
advice when my relative needs help

To have enough resources for my relative                 14.3
(e.g. rehabilitative programs, counselling)

To have explanations from professionals                  42.9
given in terms I can understand

To be shown that medical, educational or                 28.6
rehabilitation staff respect my relative's needs
or wishes

To be told about all changes in                          23.8
my relative's medical status

To have complete information on the                      23.8
medical care of traumatic injuries

To have complete information on my                       33.3
relative's physical problems

To have enough resources for myself or                    9.5
the family (e.g. financial or legal counselling,
respite care, counselling, nursing or day care)

Help in getting over my doubts and fears about            4.8
the future

To have complete information on my relative's            28.6
problems in thinking (e.g. confusion, memory)

To be assured that the best possible medical             23.8
treatment is being given to my relative

To be shown that my opinions are used in                 23.8
planning my relative's treatment,
rehabilitation or education

To have other family members understand my               23.8
relative's problems

Help in remaining hopeful about the future               19.0

To have different professionals agree on the             19.0
best way to help my relative

To be told if I am making the best possible              14.3
decisions about my relative

To get a break from my problems and                       4.8
responsibilities

To have help from other members of the family            14.3
in taking care of my relative

To be shown what to do when my relative is acting         4.8
strange or upset

Family members living with or providing care for a brain injured relative during the first two years post-injury (Table 1) showed a high level of agreement in rating medical and professional supports as "Important" or "Very Important." A high proportion of Group 1 respondents also rated these medical and professional support needs as "Met."

Social Supports and Health Information also ranked high in importance. However, the degree to which these needs were perceived as met varied somewhat. The degree to which needs were perceived as "Met" in Group 1 ranged from 12.5% to 60%, with an average (mean) of 41.25%.

Family members living with or providing care for a brain injured relative beyond the first two years post-injury (Table 2) also rated Medical and Professional Supports as "Important" or "Very Important." However, unlike Group 1, Group 2 had a much lower rating of needs perceived as being "Met." Group 2 respondents also rated Social Supports, Financial Supports and Health Information as "Important" or "Very Important." The degree to which these needs were perceived by Group 2 respondents as "Met" ranged from 4.8% to 42% with a mean of 21.2%.

Analysis Of Family Needs

In addressing the question, do the need response patterns differ between the two groups and, specifically, does the level of "Not Met" need increase as time since injury increases? Analysis of the data was carried out using Chi-Square and Spearman's correlation coefficient.

The Chi-Square statistical test for relatedness or independence was used to determine if differences in the need response patterns between the two groups were statistically significant. The total sum of each of the four need response categories (NA, Yes, Partly, No) was calculated for each of the two groups and then the Chi-Square statistic was computed. The calculated X2 value was 34.126 which at df = 3 was statistically significant at the 0.001 level.

To test whether or not levels of unmet need increased as time since injury progressed, a set of percentages was calculated using needs rated as "Important" or "Very Important" (see - Kreutzer, et al, 1994). Needs rated as "Not important" suggest that they are not as critical for the respondent. For each respondent the number of needs rated "Not Met" was divided by the number of items rated "Important" or "Very Important." The mean percentage of needs rated "Not Met" for Group 1 was 21.32 % (SD = 0.1228) and for Group 2 was 36.06 % (SD= 0.308). Conversely, the number of needs rated "Met" when divided by the number of needs rated "Important/Very Important" for each respondent showed that Group 1 respondents rated more needs as being "Met" (mean 33.43%, SD = 5.87) than group 2 respondents (mean 17.77%, SD=6.11).

Spearman's correlation coefficient was then used to characterize the relationship between unmet need (needs rated as "Not Met") and time since injury. The result of this correlation (rho = 0.435, p [is less than] 0.05) was a positive relationship between time since injury and unmet need. The results of the Chi-Square and Spearman's correlation show statistically significant difference in the need response patterns between the two groups. The degree to which needs are rated as "Not Met" does increase as time since injury progresses.

Discussion

Changes in family needs

The purpose of this study was to investigate changes in family needs as time since injury progressed. The ranked results of the two groups 0-2 yrs post-injury and 2+yrs post-injury (Tables 1 & 2) suggest that family needs changed from focussed acute medical and professional supports during the first two years to an expanded range of needs (including medical and professional supports) such as community supports, financial resources, care giver supports, and health information.

The findings on family needs during the first two years post-injury (Table 1) clearly indicate the important needs to be health information, medical, and professional supports, and are consistent with both Kreutzer et al.'s (1994) and Mathias' (1984) findings.

The results of the rank ordering of family needs beyond two years post-injury (Table 2) provide the first "time of onset specific" data beyond the range of the Kreutzer et al. (1994) study. Family needs beyond two years post-injury (Table 2) expand to encompass needs associated with living in the community with a relative who has an acquired brain injury. Needs now include the support of family, financial resources, community supports, care giver supports, long-term planning assistance, health information, and medical and professional supports. As these needs were also reported in Maus-Clum and Ryan's (1981) and Campbell's (1988) research, their sample probably included family members caring for a relative beyond two years post-trauma.

Health information that specifically addresses managing personality and behavior changes and associated difficulties of brain injury was highlighted by Willer and Linn (1993) to be a crucial need for family members. The present study found this (as represented by the statement: "I need to be shown what to do when my relative is upset or acting strange") to be very important to family members in both the short and long term. Behavioral and personality changes are key stressors for family members living with a brain-injured relative.

Changes in the level of unmet need

The literature has suggested that as time since injury increases, family members find it increasingly difficult to cope with the experience of higher levels of stress and burden in the context of longevity. The percentage "Met" data corresponding to the "Important" and "Very Important" needs of the two groups (tabulated in Tables 1 and 2) clearly suggest that Group 2 (2+yrs post injury) has a much lower average of "Met" needs than Group 1 (0-2 yrs).

The Chi-Square analysis of need-response patterns (see Table 3) highlights the statistically significant nature of the different need response patterns between the two groups. In order to confirm the pattern suggested, Spearman's correlation coefficient showed a positive relationship between time since injury and unmet need.

Table 3. Total Frequencies for Family Members caring for a relative who has an acquired brain injury during the first two years and beyond the first two years post trauma.

Family members of individuals        Degree to which needs were met.
who have had an acquired brain
injury.
                                         Not
                                      Applicable   Yes   Partly

Group 1 (0-2 yrs post injury N = 8)       36       104     123
Group 2 (2+yrs post injury N = 21)       124       149     336
critical value = 11.34
df=3
p<= 0.001
                                                   Chi Square
                                          No         Value

Group 1 (0-2 yrs post injury N = 8)       57         34.13
Group 2 (2+yrs post injury N = 21)       231
critical value = 11.34
df=3
p<= 0.001

The finding in the current study of increasing levels of unmet need as time since injury progresses suggests the possibility of a relationship between unmet needs and stress and burden in family members caring for a brain-injured relative.

General Discussion

The findings reinforce the premise that family members experience an increase in the level of unmet need as time since injury increases. Family needs (as time since injury increases) also change in terms of increased emphasis on community and social supports. It is important to note that there was a continuing need for professional and medical supports as well. Contrary to what was expected, family needs did not shift from medical-based supports but rather expanded to encompass both community-based as well as medical/professional-based supports. The degree to which needs were perceived as met by respondents caring for a brain injured relative beyond two years post-trauma was quite low.

The dissatisfaction with available medical/professional support beyond two years post-trauma was reflected by a number of comments provided in response to the open ended question: "If there are any other needs that were not included on this questionnaire, please write them below." Comments included:

   "Most of our problems are due to the ignorance of the medical profession
   and greater public."

   "I still know very little about my partner's medical issues - I need(ed)
   more feedback from health professionals."

   "I think I should have been warned of the possibility of epilepsy after
   brain trauma. When it happened, I thought my partner was having a second
   stroke!"

   "Not having anyone to call when problems arise. It isn't any good waiting
   for an appointment the next day - the problem isn't as urgent (by then)."

Other respondents commented on long-term community and social supports:

   "After rehabilitation I feel there should be some sort of ongoing support
   (in the community) people can turn to if needed."

   "I have been very disappointed by what's available ill the community (for
   my brain-injured relative)."

   "The community facilities and supports available in rural and isolated
   communities are sparse and where they are available their knowledge of
   brain injury is woefully ignorant and limited."

These comments reflect specific service provision within Australia. However, it is interesting to note that several European and North American (Brooks et al., 1986, Thomsen, 1984; Kreutzer et al., 1994) studies also highlight limited access to community and professional supports and resources as areas of concern. It appears that the findings relating to unmet need of this study are consistent with much of the international research.

Cautions for Interpretation

The findings of the current study provide support of previous research lending credence to the results but several factors must be acknowledged regarding its interpretation. The relatively small sample size and geographic dispersion of respondents limits the generalization of the results.

Second, the brevity of respondent information obtained and lack of identifying information prevented follow-up and an analysis of care giver characteristics. Data on socioeconomic status. ethnicity, family systems, and residential location may also have been useful.

Third, several respondents reported that their relatives had experienced multiple brain injuries (i.e. secondary causes from epilepsy, transient ischaemic attacks, strokes, motor vehicle accidents). Analytical procedures used in this study were unable to take into account these multiple effects and only used the earliest date of trauma.

Finally, the majority of respondents were recruited from agencies that provide services to clients who did not receive compensation for their injuries. The high number of non-compensable families responding in the sample may have skewed the data on unmet needs, since many of these people do not have the resources to purchase services and supports that compensation would allow.

Summary/Conclusion

According to this study, family members experience changing and expanding needs as time since injury progresses. Family needs expand from medical and professional supports to include social and community supports, as well as financial resources. This `expansion' in family needs (as opposed to a `shift' in needs) has impact on several different areas of service provision and service models.

Given that family members experience higher levels of unmet need as time since injury progresses is often associated with having to negotiate multiple service systems, it would make sense to streamline service delivery. Willer and Corrigan (1994) found that negotiating service systems is a key source of stress and frustration for families. With expansion of requirements as time progresses, it is vital that professionals working in services for people with ABI and their families be aware of the expanding needs and seek to assist them in the process of finding resources.

Awareness and education should not be only restricted to service providers but also extended to policy developers. The need to develop frameworks of service delivery that incorporate the need for services from both medical and social welfare orientated systems throughout the lifespan can empower the family by reducing service complexities and creating easier access to these services. One example of an attempt to address service delivery issues is the development of the model systems for traumatic brain injury rehabilitation (Ragnarsson, Thomas, & Zasler, 1993).

In conclusion, this study highlights the expanding needs that family members experience as time since injury progresses. Increased levels of perceived unmet need as time since injury progresses relate to the complexities of dealing with multiple service models which each have their own agendas and philosophical underpinning (i.e. medical model versus social/welfare model). The enormous task of family members in caring for a brain-injured relative may be made easier if services are dynamic and flexible in terms of addressing actual needs. The ability for service providers to understand and provide resources and supports for expanding family needs will either alleviate or exacerbate levels of unmet need among people who, as Florian et al. (1991) stated, are "coping with one of the most difficult tasks that can confront a family."

References.

Australian Bureau of Statistics (1993). Disability, Ageing & Careers, Australia: Brain Injury & Stroke. Canberra: Government Printer.

Brooks, N. (1991). The head injured family. Journal of Clinical and Experimental Neuropsychology. 13 (1), pp. 155-188.

Brooks, N., Campsie, L., Symington, C., Beattie, A. & McKinlay, W.(1986). The five year outcome of severe blunt head injury: a relative's view. Journal of Neurological & Neurosurgical Psychiatry 49, 764-770.

Campbell, C. (1988). Needs of relatives and helpfulness of support groups in severe head injury. Rehabilitation Nursing 13, 320-325.

Camplair, P. & Kreutzer, J.(1989). Psychosocial needs of families of adult head injury survivors. Presented at the 13th Annual Postgraduate Course on the Rehabilitation of the Brain Injured Adult and Child; June 1989; Williamsburg, Va.

Florian, V., Katz, S. & Lahav, V.(1989). Impact of traumatic brain damage on family dynamics and functioning: A review. Brain Injury 3 (3), 219-233.

Kreutzer, J., Serio, C., & Berquist, S. (1994). Family needs after brain injury: A quantitative analysis. Journal of Head Trauma Rehabilitation 9 (3) 104-115.

Mathias, M. (1984). Personal needs of family members of critically ill patients with and without brain injury. Journal of Neurosurgical Nursing. 16, 36-44.

Maus-Clum, N. & Ryan, M. (1981). Brain injury and the family. Journal of Neurosurgical Nursing 13 (4), 165-169.

McKinlay, W., Brooks, N., Bond, M., Martinage, D. & Marshall, M. (1981). The short-term outcome of severe blunt head injury as reported by relatives of the injured person. Journal of Neurological & Neurosurgical Psychiatry 44, pp. 527-533.

Oddy, M., Humphrey, M. & Uttley, D. (1978). Stress upon the relatives of head-injured patients. British Journal of Psychiatry. 133, pp.507-518.

Oddy, M., & Humphrey, M. (1980). Social recovery during the year following severe head injury. Journal of Neurological & Neurosurgical Psychiatry 43, pp.789-802.

Panting, A. & Merry, P. (1972). The long-term rehabilitation of severe head injuries with particular reference to the need for social and medical support for the patient's family. Rehabilitation, 38, 33-37.

Ragnarsson, K., Thomas, J. & Zasler, N.(1993). Model systems of care for individuals with traumatic brain injury. Journal of Head Trauma Rehabilitation 8 (2) pp. 1-11.

Serio, C., Kreutzer, J. & Gervasio, A., (1995) Predicting family needs after brain injury: implications for intervention. Journal of Head Trauma Rehabilitation 10(2) pp. 32-45.

Serio, C., Kreutzer, J. & Witol, A. (1997). Family Needs After Traumatic Brain Injury: A Factor Analytical Study Of The Family Needs Questionnaire. Brain Injury 11 pp. 1-9.

Smeltzer, S. & Bare, B. (1992). Brunner & Suddarth's Textbook of Medical - Surgical Nursing. J.B. Lippincott Co.: Philadelphia.

Thomsen, I. (1972). The patient with severe head injury and his family. Scandinavian Journal of Rehabilitation Medicine 6, 180-183.

Thomsen, I. (1984). Late outcome of very severe blunt head trauma: a 10 - 15 year second follow-up. Journal of Neurological & Neurosurgical Psychiatry 47, pp. 260 - 268.

Willer, B. & Linn, R. (1993). Practical Issues in Behaviour Management for Family Members of Individuals with Traumatic Brain Injury. Neuro-Rehabilitation 3(2), pp.40-49.

Willer, B. & Corrigan, J. (1994). What ever it takes: A model for community based services. Brain Injury 8 (2) pp. 59 -71.

Yeatman, A. (1996). Getting real: The interim report of the Commonwealth/State Disability Services Agreement. Canberra: Government Printer.

Deakin University

Paul Leung, Schools Of Studies In Disability, Deakin University, 221 Burwood Highway, Burwood, Victoria, 3125, Australia.