JCPSLP Vol 17 No 2 2015_web

Dimension 2: Alignment of intervention with goals

That was a bit traumatic but I couldn’t do anything about it anyway, so I just let it be” (Thomas, PWTBI), and in general PWTBI or their SO reported the need to actively seek out information on TBI, associated communication impairments, and available rehabilitative services independently, due to a perception that the information provided by the speech pathologist was insufficient, biased or confusing. To do so, they reported employing strategies of personal networks, the internet, or other professionals. As Mary reported: “I started googling, mainly because we couldn’t get information, it was really hard getting information. We were in limbo as to how we proceeded” (Mary, SO). When information was received participants reported feeling confused and overwhelmed by the content, relevance, and/or differing opinions of the professionals providing the information. As Mitchell describes: There was a group run by the neuropsychologist and she was very good. But again, that was totally voluntary, no one actually forces you to listen to this, you work it out for yourself pretty much. It’s sorting the chaff from the wheat. It’s all very confusing for everyone involved. I mean, I didn’t know anyone who had a brain injury and my family didn’t either so we had no idea. All of my injuries or all of my problems we’ve discovered since and obviously some people in hospital have very set ideas on things. (Mitchell, PWTBI) Future directions and clinical implications This study highlights facilitators and barriers to optimum access and utilisation of SLP services for PWTBI in Australia. The small sample size is acknowledged, and data from this study should be interpreted as a preliminary investigation into the perceptions of SLP service users. In particular, it should be noted that all PWTBI included in this study were male, and SOs were female. Participants received services within two Australian states within the past 15 years. Given that much has changed in the field of rehabilitation during this time, a comparison of therapeutic approaches and practice guidelines across this period may be warranted. In addition, perceptions of service may differ for individuals in other states, of different gender, of varying severity levels, and those currently receiving SLP services within Australia. The parallels between service user experiences and current recommendations for best practice are striking. Participants highlighted key aspects associated with perceptions of SLP services in concert with the literature, including equity in access and utilisation of services; use of a holistic, multidisciplinary, person-centred approach to management; and the benefits of providing individuals and their significant others with timely, accurate, non-biased, and appropriate information. Crucial to satisfaction and positive outcomes was a strong, collaborative clinician– client relationship. These findings warrant investigation on a larger scale, preferably of a prospective nature in order to capture current practice of SLPs within Australia, and how this relates to service users’ perceptions of care. Acknowledgements This research received no specific grant from any funding agency, commercial or not-for-profit sectors.

While all participants remarked that they considered speech therapy to be a beneficial component of their rehabilitation and would recommend it to others in the future, not all participants were satisfied with the intervention approaches chosen by clinicians. In general, participants reported a preference for functional activities, clearly aligned with attaining relevant goals. “The most beneficial was doing a lot of the return to work therapy” (Gordon, PWTBI). Flexibility in approach, appropriate choice of task difficulty, and speed of progression were reported to influence clinician–client relationships, and impact perception of overall standard of care. I was put in front of a computer doing quizzes which were testing my vocabulary and recall which I didn’t have too much trouble with. It was essentially a waste of time. I think the worst score I got was 8 out of 10 but usually 9 or 10 out of 10. That went on for months and months and I was like, what am I doing? It seemed pretty stupid to me. I’ve a feeling the speechie [SLP] didn’t realise that I was actually a semi-intelligent sort of guy. (Mitchell, PWTBI) Communication between members of the multidisciplinary team was also reported to influence participant experience. When reflecting on care received in the hospital system, Mitchell (PWTBI) stated: “I’m not sure they work together as such, it was kind of like Chinese whispers but I’m sure they had their way”. A similar theme was reported by Gordon (PWTBI) who described his care as being “Very subdivided, you see a psychologist and then you see a speech pathologist and the speech pathologist didn’t touch one ounce on the cognitive issues that I had”. Dimension 3: Involvement of family members Involvement of family members in rehabilitation is known to positively impact quality of life, with support from significant others recognised to form a key environmental factor in the World Health Organisation’s International Classification of Functioning – Disability and Health (WHO, 2011). Indeed, inclusive communication with the family or primary caregiver is considered essential when providing services to an individual with a TBI (Forster et al., 2012). However, in the course of this study, little evidence was found to show families had been included in rehabilitation by an SLP. This was perceived by participants as impeding quality of care, demonstrating little concern of the impact of TBI on the family, and inadequate recognition of their potential to assist in the recovery process. Mitchell (PWTBI) stated: “I’ll say that they [Mitchell’s family] came to one or two sessions over the course of a year as an outpatient. The hospital? No, not at all. Totally closed door”. Similarly, Mary (SO) reported “My significant other and I were supposed to have a meeting in the hospital with the doctors and the speech pathologist and the physio [physiotherapist], but that never ever happened”. Theme 3: Searching for information In line with previous research (O’Callaghan, McAllister, & Wilson. 2012), participants reported deficits in the amount, timing, and appropriateness of information provided by the health care team to have a negative impact on their perception of support and engagement in therapy. Lack of information of possible symptoms resulted in undue anxiety and distress in some cases, “My speech was … the TBI had affected it. My talking sounds very different now.

66

JCPSLP Volume 17, Number 2 2015

Journal of Clinical Practice in Speech-Language Pathology