Persons with acquired brain injury require continuing support and care in various
aspects of their lives many years post-injury. Their care and support are mainly provided
by family members. While respite is one of a range of critical support systems for carers
and people with life-long disability, very little is known about respite in the area of
acquired brain injury. The majority of the research on respite has been undertaken in
developmental disability, mental health and in aged care, but there is no research to date
about respite from the perspectives of the person with a disability, the carer and respite
provider. There is also no research that examines these perspectives in the acquired brain
This study was aimed to address this gap in the literature by investigating respite from
the perspectives of the person with acquired brain injury, the carer and the respite provider.
It also examined the profile of respite services being provided in the Australian state of
New South Wales as there had not been a comprehensive mapping of respite before.
Survey methodology was used to gather information from persons with acquired brain
injury and their carers who were members of the New South Wales Brain Injury
Association, which is the peak advocacy association of people with brain injury. The same
methodology was used to gather similar information from members of Interchange Respite
Care New South Wales, which is a peak association representing respite providers in the
The survey questionnaires were developed and designed after an extensive review of
the literature, and were reviewed by experts in the fields of respite, disability and acquired brain injury. The survey questionnaire was also trialled on a sample of families. The
survey questionnaires for the three participant groups shared several common sections,
such as demographic information; factors influencing respite use; expectations of respite;
and satisfaction with respite services used by persons or carers. The responses from the
three participant groups were analysed and compared using logistic regression and
The key findings of the study are (a) several characteristics or factors of the person with
acquired brain injury and their carer were significantly associated with the use of respite,
(b) there were several common factors that all three participant groups reported to influence
respite use, and (c) there were several common expectations of respite among the three
participant groups. Some of the characteristics or factors that were significantly associated
with respite use included the severity of disability, the high level of dependency of the
person with acquired brain injury, and the number of days spent in a coma. Common
factors reported by all three participant groups to influence respite use included the stress
level of the carer and the severity of disability. Factors reported to influence respite use
appear to be consistent with the literature in developmental disability.
There were common perspectives regarding the expectations of respite among all three
participant groups, such as the need for trained and qualified respite staff; a wider range of
respite services and more flexibility of respite service provision. The study also indicated a
reported lack of sufficient respite for persons with acquired brain injury and their carers.
Some of the findings of the study appeared to be consistent with the research literature on
acquired brain injury; such as the majority of carers being mainly female; there is a reliance on informal networks for the care and support of the person with acquired brain injury; and
the majority of the persons with acquired brain injury being male. The study also found that
many respite providers in New South Wales had extensive experience in running a respite
The findings of the study have important implications for policy direction and
development, practice and service delivery, and research. In terms of policy direction and
development, implications explored included: a flexible funding model that is responsive to
the needs of carer and person with acquired brain injury, and adequately trained and
qualified staff and volunteers play an important role in respite provision. Further research
is required to understand empirically the benefits and quality of life outcomes over a period
of time, such as what types and extent of respite are more beneficial for certain
The study highlights the perspectives of persons with acquired brain injury, their carers
and respite providers. Respite is an important support system to enable persons with
acquired brain injury to receive the continuing care and support from their carers. Respite
in acquired brain injury is a new field that merits further research as it holds the potential
for addressing the needs of people with acquired brain injury and their carers.
Alexander-Kaufman, Kimberley Louise(The University of Sydney. Discipline of Pathology, Faculty of Medicine,, 2007-11)
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