JCPSLP Vol 17 No 2 2015_web

Aged care

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

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),

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.

THIS ARTICLE HAS BEEN PEER- REVIEWED KEYWORDS BEST PRACTICE CONTINUUM OF CARE HEALTH CARE ACCESS INTERPRETIVE PHENOMENOLOGY PERCEPTION OF CARE TRAUMATIC BRAIN INJURY (TBI)

Kathryn A. O’Leary

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JCPSLP Volume 17, Number 2 2015

www.speechpathologyaustralia.org.au