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Changing Family Needs After Brain Injury

Journal of Rehabilitation, Oct-Dec, 1998 by Peter Stebbins, Paul Leung

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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.

Health Care Industry

Changing Family Needs After Brain Injury

Journal of Rehabilitation, Oct-Dec, 1998 by Peter Stebbins, Paul Leung

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