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Aged care
www.speechpathologyaustralia.org.auJCPSLP
Volume 17, Number 2 2015
63
Kathryn A.
O’Leary
THIS ARTICLE
HAS BEEN
PEER-
REVIEWED
KEYWORDS
BEST PRACTICE
CONTINUUM OF
CARE
HEALTH CARE
ACCESS
INTERPRETIVE
PHENOMENOLOGY
PERCEPTION OF
CARE
TRAUMATIC BRAIN
INJURY (TBI)
Speech pathology services
following traumatic
brain injury
The perspectives of health care consumers
Kathryn A. O’Leary, Alastair D. McRae, Anna M. Copley, and Naomi A. MacBean
with negative implications for both the person with TBI and
significant others (O’Callaghan, McAllister, & Wilson, 2011).
Adapting to the changes following TBI can be extremely
difficult, not only for adults with TBI but also for their families. In
the years following hospital discharge, most of the responsibility
for supporting a person with TBI falls on the family or significant
others (Bayen et al., 2014). The impact upon families providing
this care is frequently underestimated (Wells, Dywan, &
Dumas, 2005). Given the impairments sustained as a result
of a person’s TBI, relatives may be faced with the prospect
of coping with a person who is very different from the one
they knew before the trauma. The impact of this caring role
on family life and relationships can be profound and often
does not diminish with time (Knight, Devereux, & Godfrey,
1998). Common caregiver reactions include anxiety, shock,
disbelief, denial, and frustration (Vogler, Klein & Bender,
2014). Consideration of the needs of those filling the carer
role is essential, given that 80% of adults who survive TBI
reintegrate into the community and require ongoing support
and care from their families (O’Callaghan, et al., 2011).
As organisations and professions embrace contemporary
recommendations for patient-centred approaches,
individual perceptions of care following TBI are increasingly
recognised, with particular emphasis on equity of access
to, and utilisation of, health care services. Existing research
suggests that individuals with TBI may experience inequity
in accessing ongoing health care following discharge from
hospital, with associated detrimental impact on health
outcomes, particularly for those living in geographically
isolated regions (Health Department of Victoria, 1991;
Mitsch, Curtin, & Badge, 2014; O’Callaghan, McAllister,
& Wilson, 2009). It is unclear if this inequity in general
health care also applies to access to speech-language
pathology (SLP) services, and whether or not other
potential sources of inequity in the provision of TBI services
(e.g. the provision of inadequate service, or limitations in
access to SLP services due to eligibility criteria or referral
practices) are perceived to be present by service users.
Therefore, the objective of this study was to identify
barriers and facilitators influencing access to, utilisation
of, and satisfaction with SLP services, from acute care to
community living, as experienced by participants with TBI
(PWTBI) and their significant others (SO).
Method
An interpretive phenomenology research methodology was
adopted to collect and analyse data to investigate
participants’ individual experiences of SLP services.
The primary objective of this research was to
document barriers and facilitators relating to
access to, utilisation of, and satisfaction with
SLP services following traumatic brain injury
(TBI) across the continuum of care. The
research consisted of semi-structured
interviews with four adults with TBI and two
significant others, analysed according to an
interpretive phenomenology research
methodology. Three key themes were identified:
equity in service provision (availability and
utilisation of services), management approach
(collaborative goal-setting, alignment of
intervention with goals, family involvement),
and searching for information. Experiences
with SLP services during rehabilitation were
valued by individuals with TBI and their
significant others. To further improve access
to, utilisation of, and satisfaction with
services, a person-centred approach to
management with ongoing family involvement
coupled with timely provision of accurate and
appropriate information is suggested.
T
raumatic brain injury (TBI) is a major cause
of morbidity and mortality worldwide (Perel,
Edwards, Wentz, & Roberts, 2006), resulting in a
multitude of cognitive communication, psychosocial, and
physiological deficits; as diverse and heterogeneous as
the adults and injuries themselves for those who survive
(Johnson & Jacobson, 2007). Motor speech disorders
(85%), dysphagia (42%), and cognitive communication
disorders (CCD) (80–100%) are prevalent within this clinical
population, having the potential for profound negative
impact on quality of life and overall well-being (Degeneffe
& Lee, 2010). Targeted speech pathology intervention,
particularly if started early within the acute recovery stage,
assists in achieving maximal rehabilitative outcomes;
fostering increased confidence, independence, and return
to employment (Togher, Power, Rietdijk, McDonald, & Tate,
2012). Following hospital discharge, however, access to
health care services for individuals with TBI has been shown
to decline progressively (Lefebvre, Pelchat, Swaine, Gelinas,
& Levert, 2005; O’Callaghan, McAllister, & Wilson, 2010),