JCPSLP Vol 16 Issue 1 2014

Journal of Clinical Practice in Speech-Language Pathology Journal of Clinical ractic i Spe ch-L l

Volume 13 , Number 1 2011 Volume 16 , Number 1 2014

Translating research into practice

In this issue: Carers’ experiences of rehab in the home SP practice in inpatient settings The changing face of clinical research Translating research into practice for children with hearing loss Improving aphasia services Knowledge, translation and exchange interventions

Print Post Approved PP352524/00383 ISSN 2200-0259

Speech Pathology Australia

Please contact the Publications Officer at Speech Pathology Australia for advertising information. Acceptance of advertisements does not imply Speech Pathology Australia’s endorsement of the product or service. Although the Association reserves the right to reject advertising copy, it does not accept responsibility for the accuracy of statements by advertisers. Speech Pathology Australia will not publish advertisements that are inconsistent with its public image. 2014 Subscriptions Australian subscribers – $AUD106.00 (including GST). Overseas subscribers – $AUD132.00 (including postage and handling). Institutional rate – $AUD330 (including GST). No agency discounts. Reference This issue of Journal of Clinical Practice in Speech-Language Pathology is cited as Volume 16, Number 1, 2014. Disclaimer To the best of The Speech Pathology Association of Australia Limited’s (“the Association”) knowledge, this information is valid at the time of publication. The Association makes no warranty or representation in relation to the content or accuracy of the material in this publication. The Association expressly disclaims any and all liability (including liability for negligence) in respect of use of the information provided. The Association recommends you seek independent professional advice prior to making any decision involving matters outlined in this publication. Copyright ©2014 The Speech Pathology Association of Australia Limited. Contributors are required to secure permission for the reproduction of any figure, table, or extensive (more than 50 word) extract from the text, from a source which is copyrighted – or owned – by a party other than The Speech Pathology Association of Australia Limited. This applies both to direct reproduction or “derivative reproduction”– when the contributor has created a new figure or table which derives substantially from a copyrighted source.

Level 2 / 11-19 Bank Place, Melbourne, Victoria 3000 T: 03 9642 4899 F: 03 9642 4922 Email: office@speechpathologyaustralia.org.au Website: www.speechpathologyaustralia.org.au ABN 17 008 393 440 ACN 008 393 440 Speech Pathology Australia Board Deborah Theodoros President Gaenor Dixon Vice President Communications Margeurite Maggiore Vice President Operations Stacie Attrill

Electronic copies of JCPSLP Speech Pathology Australia members are able to access past and present issues of JCPSLP via the Speech Pathology Australia website www.speechpathologyaustralia.org.au/ publications/jcpslp Electronic copies of the full journal or individual articles are available to everyone (members and non-members) at a cost by emailing pubs@speechpathologyaustralia.org.au or by completing the form available from the Speech Pathology Australia website

Felicity Burke Tennille Burns Teena Caithness Michelle Foley Robyn Stephen

JCPSLP Editors Anna Copley and Jane McCormack c/- Speech Pathology Australia Editorial Committee

Jade Cartwright Natalie Ciccone Deborah Hersh Elizabeth Lea Carl Parsons David Trembath Samantha Turner

Copy edited by Carla Taines Designed by Bruce Godden,

Wildfire Graphics Pty Ltd Contribution deadlines Number 3, 2014 14 April 2014 (peer review) 30 June 2014 (non peer review) Number 1, 2015 1 August 2014 (peer review) 14 October 2014 (non peer review) Number 2, 2015 3 December 2014 (peer review) 1 February 2015 (non peer review)

Advertising Booking deadlines Number 2, 2014 2 April 2014 Number 3, 2014 13 August 2014 Number 1, 2015

2 December 2014

Translating research into practice

From the editors Anna Copley and Jane McCormack

Contents

1 From the editors

2 Carer experiences with

rehabilitation in the home: Speech pathology services for stroke survivors – Katy Stewart,

Natalie Ciccone and Elizabeth Armstrong

7 Speech pathology clinical practice in sub-acute brain injury rehabilitation – Kerrin

Watter, Paula Addis, Anna Copley and Emma Finch

F or many years, clinicians and researchers alike have noted a gap between research about speech pathology, and the practice of speech pathology. Both groups have identified factors contributing to this gap and barriers impacting on the profession’s capacity to narrow the gap. Time, relevance and utility of research findings are often cited as significant issues. In recent times, the expansion of the definition of evidence-based practice to incorporate clinical experience and expertise could be considered an attempt to demonstrate the value of both empirical research and practice knowledge and skills in delivering the best care to our clients. Further attempts to narrow the gap include a new focus on translational research, practice-based research, and knowledge transfer and exchange. This issue of JCPSLP is focused on such research, and includes papers that define the principles underlying practice-based research, and studies that applied these principles. In their clinical insights paper, Brown and colleagues overview the current state of speech pathology research in Australia and discuss the value of practice-driven research in improving the quality of care for individuals with communication and swallowing conditions. They provide case studies of a researcher and a clinician who have engaged in practice-based research and highlight the advantages of this approach. Another clinical insights paper from Crowe and McLeod presents findings from a series of studies investigating communication choices of families raising children with hearing loss in Australia. They synthesise the findings of these studies in a way that makes them more accessible for clinicians, which is an important feature of research that aims to guide and inform clinical practice. Thomas and colleagues, in the third clinical insights paper, reflect on the establishment of a National Health and Medical Research Centre for Clinical Research Excellence in Aphasia Rehabilitation which aims to increase the aphasia research evidence base while facilitating the translation of best available evidence into practice. This centre, in collaboration with clinicians and consumers, is developing the Australian Aphasia Rehabilitation Pathway which aims to improve the outcomes for people with aphasia as well as their families. Research papers in this issue also relate to the theme of practice-based research. Watter and colleagues present the results of a study investigating the practices of speech pathologists working in brain injury rehabilitation units across Australia. As the first speech pathology research in such a setting, it contributes to the evidence base, identifies gaps in knowledge and directs future research in the field. Stewart and colleagues used practice- based research to explore the roles, experiences and preferences of carers involved in speech pathology rehabilitation services in the home. Regular columns also focus on the theme of practice-based research. In the “What’s the evidence?” column, Power describes knowledge transfer and exchange (KTE), which is an approach to creating and using research in which both clinicians and researchers have a key role. She examines the effectiveness of KTE interventions for rehabilitation settings and suggests a need to utilise this model to inform and ensure best practice for clients. Other columns include: the “Top 10 resources” used to translate research into practice in a paediatric community health service, “Ethical conversations” identifying a framework for knowledge translation to support responsible and ethical clinical practice, “Webwords”, Resource reviews and Around the journals. We hope you enjoy this issue.

14 The changing face of clinical research – Kyla Brown, Anne J Hill, Anna Copley, Miranda Rose and Bena Cartmill Translating research to practice for professionals working with children with hearing loss – Kathryn Crowe and Sharynne McLeod 24 The effectiveness of knowledge transfer and exchange interventions for implementing rehabilitation evidence into clinical practice – Emma Power improving aphasia services: Application of a knowledge transfer and exchange framework – Emma Thomas, Emma Power, Linda Worrall, Miranda Rose, Leanne Togher, and Alison Ferguson 37 Responsible and ethical clinical practice: A framework for knowledge translation – Belinda Kenny and Susan Block 19 Communication choices: 30 A national approach to

41 Webwords 48: Clinical and

translational research – Caroline Bowen

43 Translating research into practice top 10 resources – Amy Rynsent

45 Around the journals

48 Resource reviews

1

JCPSLP Volume 16, Number 1 2014

www.speechpathologyaustralia.org.au

Translating research into practice

Carer experiences with rehabilitation in the home Speech pathology services for stroke survivors Katy Stewart, Natalie Ciccone and Elizabeth Armstrong

Caring for a stroke survivor can be a complex role with carers at an increased risk of mental health difficulties. Early supported discharge from hospital with rehabilitation in the home (RITH) allows stroke survivors to return home at an earlier stage in the recovery process, potentially placing an extra burden on carers. Being involved in intensive therapy, in the home, in the early days post-stroke may be difficult with the role and experiences of carers in RITH being underresearched. This paper identifies the roles, experiences and preferences of ten carers of stroke survivors with dysarthria and dysphagia. Many carers were involved with RITH speech pathology rehabilitation and reported positively on services. Cultural and linguistic issues and the implications of home practice for carers are also discussed. Introduction The last decade has seen a significant change of focus toward community-based stroke rehabilitation due to rising hospital service costs (Lincoln, Walker, Dixon, & Knights, 2004). Early supported discharge (ESD) and rehabilitation in the home (RITH) services are frequently used as these programs have been found to decrease length of stay in hospital (Rodgers et al., 1997), are cost effective (Ricauda et al., 2005), have increased patient satisfaction (Holmqvist et al., 1998; Rudd, Wolfe, Tilling, & Beech, 1997), improve general long-term clinical outcomes (Fjærtoft, Indredavik, & Lydersen, 2003) and are as effective as usual speech pathology (SP) care for language and swallowing disorders (Brunner, Skeat, & Morris, 2008) when compared to traditional stroke unit inpatient rehabilitation. Another possible benefit of RITH is a potential increase in the amount of contact between carers/family and therapy staff compared to inpatient rehabilitation. Carer attitudes and the increased presence of the carer in SP sessions (Sacchett, Byng, Marshall, & Pound, 1999), regular practice (Robertson, 2001) and the presence of frequent communication opportunities (Bowen et al., 2012) may support skill development and enhance SP rehabilitation

outcomes. Independent practice may encourage the habitual practice required for motor learning, which in turn may encourage the stroke survivor to continue practice when formal treatment finishes, potentially reducing the risk of any “de-training” effects (Clark, O’Brien, Calleja, & Newcomb Corrie, 2009). The establishment of a regular independent exercise regimen may enhance treatment effectiveness (Robertson, 2001) and its completion and effectiveness may be enhanced through carer support. Although carer involvement may have a positive impact on therapy outcomes, the acceptability of RITH SP and SP home programs and the associated need for the involvement of carers is not known. Caring for stroke survivors Family members of stroke survivors are increasingly being relied upon to provide care and support in the home (Al-Janabi, Coast, & Flynn, 2008) and with RITH the role of the carer may be extended. Early and inadequate discharge planning are known to have a negative impact on carers of stroke survivors (Ski & O’Connell, 2007) who are already at risk of suffering from anxiety, depression (Greenwood & Mackenzie, 2010) and burnout (van den Heuvel, Witte, Schure, Sanderman, & Jong, 2001). Carers also experience uncertainty about their role (O’Connell & Baker, 2004). Carers and family members are seen as important contributors in SP (Sacchett et al., 1999) and in RITH (Koch, Wottrich, & Holmqvist, 1998). However, there is limited knowledge on carers’ roles and experiences in RITH SP services. Further exploration in this area is warranted in order to better support carers’ involvement in the therapy process. One study of ten carers of stroke survivors who live in the community (Cecil et al., 2011) provided reports of the carers’ personal experiences with caring for stroke survivors. Mixed experiences with SP services across different settings were reported across the group of carers. Carers reported positively on a community-based aphasia course and home-based therapy services. Others complained of cancelled appointments, or stated that they received little help or that they had to “fight” for therapy. The role of the carer in SP services was variable, with one carer reporting she felt she was more involved in remediating her husband’s speech than the speech-language pathologist (SLP). Post-stroke SP services appeared to be highly valued by carers but access to, and satisfaction with, SP services was variable.

THIS ARTICLE HAS BEEN PEER- REVIEWED KEYWORDS STROKE CARER DYSARTHRIA REHABILITATION IN THE HOME

Katy Stewart (top), Natalie Ciccone (centre) and Elizabeth Armstrong

2

JCPSLP Volume 16, Number 1 2014

Journal of Clinical Practice in Speech-Language Pathology

Table 1. Carer demographics and relationship to the stroke survivor (SS) Carer ID Relationship to SS Occupational status Age Ethnicity

Lives with SS

English proficiency

C1 C2 C3 C4 C5 C6 C7 C8 C9

Granddaughter

Studying Working Working Retired Working Working Working Working Retired Working

16 33 62 67 59 54 51 39 85 46

African

Yes

Limited Fluent Fluent Fluent Fluent Fluent Fluent Fluent Limited Limited

Daughter

Australian Australian Australian Australian Australian Australian

No

Wife Wife

Yes Yes

Daughter

No

Wife Wife Son

Yes Yes

Asian

No

Husband

European

Yes Yes

C10

Wife

Asian

Aims This paper examined the personal experiences of carers of stroke survivors involved in RITH SP. Specifically, this paper aimed to: 1) describe the role of carers, including their role in supporting the stroke survivors’ completion of home practice; and, 2) explore the experiences with the RITH SP program and preferences of the carer in relation to therapy being provided in the home. Method Background The data reported in this paper constitutes a subset of data from a RITH intervention study conducted in Perth, Western Australia in which SLP-delivered services were compared to services delivered by a SLP and a therapy assistant. As part of that study, 10 stroke survivors and their carer were recruited. The stroke survivors being cared for were randomly allocated to either intervention delivered by a SLP alone or the SLP and a supervised therapy assistant. All received an individually tailored rehabilitation and independent home practice program targeting dysarthria and dysphagia. The intervention was provided for three weeks and each stroke survivor was actively encouraged to practice outside of the professional therapy sessions and record details of their “home practice”. Throughout therapy, carers were actively encouraged to be involved in therapy with opportunities provided to observe SP sessions, to ask questions and receive appropriate SP education. The carer, if available at appointments, was also asked to encourage the stroke survivor to complete home practice and if required, assist with recording the amount and type of home practice. The ten stroke survivors all had a “new” stroke diagnosis, with a mean time post-stroke onset of 39.6 days (range 13–115 days). They had been directly referred to RITH from hospital and had a diagnosis of dysarthria and/or dysphagia. Stroke survivors with pre-stroke “dementia”, severe dyspraxia, severe aphasia, aphasia as a higher priority than dysarthria/ dysphagia or had a previous history of communication or swallowing disorder were excluded. Stroke survivors initially presented with dysarthria that ranged from 2 to 3.5 and dysphagia that ranged from 2.5 to 5 as rated on the UK Therapy Outcome Measure (TOM; Enderby, John, & Petheram, 1997). Two of the ten stroke survivors presented with mild aphasia (TOM rating 4) while one had moderate aphasia (rating 3). However, all prioritised speech/ swallowing therapy over aphasia intervention at the time. Both stroke survivors and carers were involved in the larger RITH intervention study but only the perspectives of the carers are reported here.

Participants Ten carers with a mean age of 51.2 years were recruited to the study. All carers were the main family member who provided the stroke survivor’s home-based informal care and were identified after discussions with the stroke survivor. This clinically based study set no formal criteria for the inclusion of the carer. However, standard procedures ensure that stroke survivors who enter RITH are discharged home to a safe environment, and if required, with an available carer. Carers were from a diverse range of backgrounds; with carers with limited English proficiency (LEP) included and supported to participate. Non-English speaking and LEP participants are underrepresented in research (Frayne, Burns, Hardt, & Moskowitz, 1996) and were purposefully included in this project. The carers with LEP were offered professional interpreting services but none accepted preferring to converse in English (C1 and C9) or use a family member to interpret for them (C10). The demographic details of the carers are outlined in Table 1. Data collection The carers were surveyed with a questionnaire after therapy completion. The questionnaire was designed by the first author to gather information on the carers’ perspectives and experiences of the SP services they had received through RITH. The questionnaire included a mixture of open field, dichotomous and scale questions to provide a combination of detailed, authentic comments with quantitative measures and ratings of opinions and behaviours (Creswell, 2013). To cater for variations in English abilities and carer availability, the questionnaire was completed in the stroke survivor’s home (five in written mode by the carer; one in a structured interview with the SLP) or as a structured phone interview with the SLP who delivered the program (n = 4). The aims of the questionnaire, which were to explore the carers’ role, experiences and preferences in RITH SP, were discussed verbally with the carer prior to completion of the questionnaire. Carers were asked to be specific about the RITH SP services they had received. Ethical approval for the study was granted by the relevant Ethics Committees. Data analysis The data were analysed using qualitative content analysis (Sandelowski, 2000). Analysis of responses varied depending on the format of the question. Tallies were calculated for the dichotomous and scaled responses to provide summary descriptive data. Responses to open-

3

JCPSLP Volume 16, Number 1 2014

www.speechpathologyaustralia.org.au

ended questions were analysed for recurring content using a descriptive analysis approach (Sandelowski, 2000). Such responses were analysed broadly through thorough reading by the researcher (KS). Categories were created and responses grouped into each category by frequency. Two external SLPs reviewed the raw data from the questionnaires, looked for emerging categories and then independently created categories and sorted responses into these. All three SLPs then met together to go through the results, with the subsequent consensus of categories and groupings. Results The results from the carer questionnaire are reported according to the aims of the research. Specifically this section examines the roles carers felt they took on as part of the provision of speech pathology services as well as their experiences with RITH SP and their service delivery preferences. The role of the carer in RITH SP When asked to explicitly identify their role in therapy, seven carers reported they undertook a role in SP intervention. The remaining three carers did not identify a specific role in intervention. Of the seven carers who identified a role in therapy, the reported “roles” included assisting with SP exercises and clear speech strategies (4/7), providing encouragement or reminders to complete practice (3/7), being present in treatment or practice sessions (3/7), and learning strategies from the SLP (1/10). One carer (C2) felt that it was “vital” to be “present” at professionally led therapy sessions and that her role included “listening to” and “learning strategies” which helped her “encourage and motivate” her mother to complete independent practice. Further analysis of responses to other questions across the questionnaire revealed carers were involved in RITH SP to a greater extent than they initially reported. Despite only seven carers explicitly acknowledging a “role” in therapy, eight carers were actually involved in RITH SP. The majority of carers were involved in therapy by prompting clear articulation and speech strategies (8/10), with many actively assisting with SP exercises (5/10). Carers reported that they also provided encouragement or reminders to practise (4/10), were present in treatment or practice sessions (3/10) and learnt strategies from the SLP (1/10). Carer assistance with dysarthria strategies Eight carers reminded the stroke survivor to use their dysarthria strategies with prompts to decrease speech rate, repetition and taking a deep breath being the most reported. One carer (C4) stated “I would say ‘stop, take a deep breath and have another go’”. Another carer (C8) reported he reminded his mother of “techniques learnt” during professionally led therapy sessions while she was completing home practice. He reported reminding his mother to use techniques “such as breathing, slowing down, thinking about what to say first and projecting her voice”. One carer (C10) reported not having to remind the stroke survivor to use the strategies learnt and one carer (C9) did not answer the question. Carer assistance with home practice All ten stroke survivors completed a dysarthria and dysphagia home practice program. Eight carers helped the stroke survivor complete their home practice. Carers helped with home practice in a variety of ways: 1. Supporting specific and active practice of exercises and providing a reminder of strategies and techniques

including demonstration and correction of exercises (5/10) 2. Providing praise and encouragement (2/10) 3. Prompting the stroke survivor to carry out home practice (1/10). Frequency of assistance with home practice Carers helped stroke survivors complete practise regularly with variability noted in the frequency with which assistance was provided. The reported range of frequency was from daily to “only occasionally”. For some participants assistance depended on the needs and desires of the stroke survivor (“Daily – if she needed my assistance” [C5]) and the availability of the carer (“Whenever we could” [C7]). Two carers (C9 and C10) reported that they did not help the stroke survivor with their practice with one carer (C9) explaining that he was too unwell to help due to his own disability. Carer opinions of stroke survivor home practice Four carers (C1, C2, C4, C10) reported that the stroke survivor had difficulty practising the home program independently and one was unsure (C9). One stroke survivor (C4) wanted to remain independent and refused help from his carer: “He preferred to practise on his own”. This carer also realised the importance of supervision and the potential impact on the accuracy of SP practice “Is he doing it right? No one knows”. Two carers (C1 and C10) mentioned the impact of LEP and reduced English literacy skills on the stroke survivors’ ability to practise independently. One carer (C1) (with LEP) helped her grandmother (with LEP) complete home practice, specifically with reading aloud the words and prompting her grandmother to articulate correctly. Another carer with LEP (C10) reported that she didn’t help her husband (with LEP) practise his exercises except “only to read certain things”. One carer reported that she and her mother prioritised social visits above SP home practice: Sometimes depending on how many visitors came and if she felt tired. I felt neighbours and visitors very helpful and important to Mum. (C5) Five carers reported that the stroke survivor found recording home practice difficult due to a hemiparesis of the arm (2/10) or fatigue (1/10). The role of the carer: Other therapeutic and caring activities Five carers were involved with caring and therapeutic activities for other RITH health professionals with responses grouped into two categories. Carers assisted with physical exercises (4/10) or activities of daily living including personal activities (2/10). One carer (C4) reported that her husband was “going all day long” with “transfer practice, walking… Butter[ing] bread… Stack[ing] cups”. One carer (C8) also assisted with aphasia therapy. Carer experiences with RITH SP and preferences for setting Experiences: RITH SP program and staff All ten carers reported that RITH SP services had been helpful. 100 out of 10… Fantastic opportunity. You girls were brilliant. It was brilliant to have it at home. (C2) All carers reported an improvement in the stroke survivors’ speech/swallowing with either a medium (5/10) or large (5/10) amount of change. The carers reported a range of benefits of the RITH SP program. The skills and support

4

JCPSLP Volume 16, Number 1 2014

Journal of Clinical Practice in Speech-Language Pathology

conversation as well as actively assisting with practice. These results support those of Mackenzie, Paton, Kelly, Brady, and Muir (2012) who reported some carers took on a “helping and supportive” role when participating in dysarthria therapy. Carer support was not limited to speech pathology, with most carers providing other types of care or helping with other therapeutic activities. Of note, most carers in this study underestimated their involvement in therapy, which may support findings of O’Connell and Baker (2004) who reported carers experience uncertainty about their role as carers. Many carers reported that the stroke survivor had difficulty completing home practice independently, with half of the carers actively helping the stroke survivor with the prescribed tasks. Some carers felt their assistance was important to help the stroke survivor complete tasks accurately. Carers were also involved with home practice by providing reminders and encouragement. While the establishment of regular home practice may enhance treatment effectiveness (Robertson, 2001), it appears many stroke survivors, in the early stages post-stroke, require some level of assistance to complete dysarthria and dysphagia tasks assigned for home practice. All carers found RITH speech pathology services helpful, reported stroke survivor improvement after therapy and most preferred home-based therapy. While the speech pathology program and staff were valued, the impact of the setting was highly valued with convenience and lack of travel required to attend speech pathology sessions the most frequently reported benefit. Carers were concerned about travelling and waiting for therapy, as well as interruptions to therapy associated with external appointments. In this study, culturally and linguistically diverse stroke survivors preferred RITH services during this phase of stroke recovery. Accessing hospital services was identified by carers as problematic for stroke survivors with LEP in line with previous reports (Hu & Covell, 1986; Woloshin, Schwartz, Katz, & Welch, 1997). Some carers also reported that stroke survivors with LEP found independent practice difficult and carer assistance was required. Clinical implications Given the significant role carers play, speech-language pathologists need to consider conducting initial family interviews to discuss the potential impact of home-based therapy and the role that the family may play. This will allow discussion about family needs and abilities in being able to support the stroke survivor in home-based rehabilitation. Speech-language pathologists should provide education for carers (Cecil et al., 2011) in a suitable format and discuss the benefits of regular independent practice and the optimal duration and frequency of therapy visits. Speech-language pathologists should also discuss with families the characteristics of the stroke survivor, such as LEP or hemiparesis, which may help or hinder the stroke survivor’s independent practice. If carers are unable to support independent practice, alternative models of service delivery, such as involving a trained volunteer (Bowen et al., 2012) or a therapy assistant may be considered. Study limitations The findings from this study add to our knowledge of carers’ experiences of rehabilitation in the home, however, we acknowledge limitations that may limit the generalisability of the results. Study outcomes may have been influenced by the small sample size (n = 10), the

from RITH SP and therapy assistant staff (3/10) and having the same staff attend was valued. The RITH SP program was also deemed a “more personal service” (C7) which helped to build self-confidence in the stroke survivor (2/10). The program’s structure, regularity and frequency of appointments (2/10), with someone “external” to the family being able to provide assistance, were also mentioned favourably. Experiences: Therapy setting Many of the reported benefits of RITH SP were related to the home-based setting. The most commonly reported (5/10) benefit was the lack of travel: Even getting her to the physio pool is difficult. (C2) He wasn’t fit enough for in and out of the car. (C4) Home-based therapy was perceived as a more “relaxed” setting (4/10), which provided security (1/10) and prevented “embarrassment” (1/10) when practising vocal exercises. One carer (C7) reported that there were “no interruptions or waiting” in the home setting when compared to “having to travel to appointments”. The impact of LEP on accessing hospital services was mentioned by one carer (C1). This carer implied that the home-based setting was helpful for her grandmother: She doesn’t know how to go there [to the hospital] it is hard. [RITH] is easier for her. It’s good for her. This carer also reported that RITH was beneficial at a certain stage in the recovery process and that “Now it is good for her to get out the house” to attend hospital outpatient SP appointments. One carer (C4) alluded to the heavy impact of providing care in the home and commented that RITH SP provided some respite from care. I thought that maybe I would have time to put the washing on… You have to be there the whole time… I couldn’t leave him with OT [occupational therapy] and physio [therapy] but I could with speech pathology. This carer reported some negatives to home-visiting, including losing “control” over her home by other RITH staff (OT and PT) intruding on the carer’s space. She reported that she needed to provide extensive care for her husband and that it was a steep “learning curve”. She also reported that in general, RITH services were not long enough, and there was a lack of “handover”. Preferences for therapy setting Nine carers preferred to have therapy in their home. Hospital-based services were reported as being inhibitory: I don’t think mentally she would have coped at [inpatient rehabilitation ward]. It is like containing a wild person to her bed; being a woman that is as capable as she was. (C2) One carer was unsure if she preferred home-based therapy: I don’t think it makes that much difference. It was great ’cos [sic] we didn’t have to get in the car and go anywhere. I wouldn’t have liked to go to [acute hospital] and [rehabilitation hospital] was too far. (C3) Discussion This study is one of the first to explore the role, experiences and preferences of carers in the context of RITH speech pathology services. In terms of role, most carers were involved with RITH SP and took on a supportive and enabling role. Carers facilitated the stroke survivors’ progress by providing encouragement to practise, reminders to use strategies to increase intelligibility within

5

JCPSLP Volume 16, Number 1 2014

www.speechpathologyaustralia.org.au

design of the questionnaire and the provision of the questionnaire to the carer by the treating speech-language pathologist. Participants were assured that their responses would be confidential and were prompted to be open and honest in their responses, but response bias cannot be ruled out. Future investigations of the roles and experiences of carers in RITH speech pathology should be delivered by an investigator who is not involved in RITH speech pathology and could include semi-structured interviews rehabilitation in the home in a supportive and enabling role, and found the services beneficial and preferable to hospital appointments. However, the impact of limited English proficiency and intensive home-based rehabilitation was evident for some carers. Further research into the amount of carer assistance required to complete independent practice, and the impact this may have on the carer is required along with specific investigation of the cultural and linguistic challenges in home-based speech pathology. References Al-Janabi, H., Coast, J., & Flynn, T. N. (2008). What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up. Social Science and Medicine , 67 (1), 111–121. Bowen, A., Hesketh, A., Patchick, E., Young, A., Davies, L., Vail, A., . . . Pearl, G. (2012). Effectiveness of enhanced communication therapy in the first four months after stroke for aphasia and dysarthria: A randomised controlled trial. British Medical Journal , 345 . doi: 10.1136/bmj.e4407 Brunner, M., Skeat, J., & Morris, M. E. (2008). Outcomes of speech-language pathology following stroke: Investigation of inpatient rehabilitation and rehabilitation in the home programs. International Journal of Speech- Language Pathology , 10 (5), 305–313. Cecil, R., Parahoo, K., Thompson, K., McCaughan, E., Power, M., & Campbell, Y. (2011). “The hard work starts now”: A glimpse into the lives of carers of community- dwelling stroke survivors. Journal of Clinical Nursing , 20 (11–12), 1723–1730. Clark, H. M., O’Brien, K., Calleja, A., & Newcomb Corrie, S. (2009). Effects of directional exercise on lingual strength. Journal of Speech, Language, and Hearing Research , 52 (4), 1034. Creswell, J. W. (2013). Research design: Qualitative, quantitative, and mixed methods approaches . Thousand Oaks, CA: Sage Publications. Enderby, P., John, A., & Petheram, B. (1997). Therapy outcome measures . San Diego, CA: Singular. Fjærtoft, H., Indredavik, B., & Lydersen, S. (2003). Stroke unit care combined with early supported discharge long- term follow-up of a randomized controlled trial. Stroke , 34 (11), 2687–2691. Frayne, S. M., Burns, R. B., Hardt, E. J., & Moskowitz, M. A. (1996). The exclusion of non-English-speaking persons from research. Journal of General Internal Medicine , 11 (1), 39–43. Greenwood, N., & Mackenzie, A. (2010). An exploratory study of anxiety in carers of stroke survivors. Journal of Clinical Nursing , 19 (13–14), 2032–2038. Holmqvist, L. W., Von Koch, L., Kostulas, V., Holm, M., Widsell, G., Tegler, H., . . . de Pedro-Cuesta, J. (1998). A randomized controlled trial of rehabilitation at home after stroke in southwest Stockholm. Stroke , 29 (3), 591–597. and focus groups. Conclusion Most carers were involved in speech pathology

Hu, D. J., & Covell, R. M. (1986). Health care usage by Hispanic outpatients as a function of primary language. Western Journal of Medicine , 144 (4), 490–493. Koch, L. v., Wottrich, A. W., & Holmqvist, L. W. (1998). Rehabilitation in the home versus the hospital: The importance of context. Disability and Rehabilitation , 20 (10), 367–372. Lincoln, N., Walker, M., Dixon, A., & Knights, P. (2004). Evaluation of a multiprofessional community stroke team: A randomized controlled trial. Clinical Rehabilitation , 18 (1), 40–47. Mackenzie, C., Paton, G., Kelly, S., Brady, M., & Muir, M. (2012). The living with dysarthria group: Implementation and feasibility of a group intervention for people with dysarthria following stroke and family members. International Journal of Language and Communication Disorders , 47 (6), 709–724. O’Connell, B., & Baker, L. (2004). Managing as carers of stroke survivors: strategies from the field. International Journal of Nursing Practice , 10 (3), 121–126. Ricauda, N. A., Tibaldi, V., Marinello, R., Bo, M., Isaia, G., Scarafiotti, C., & Molaschi, M. (2005). Acute ischemic stroke in elderly patients treated in hospital at home: A cost minimization analysis. Journal of the American Geriatrics Society , 53 (8), 1442–1443. Robertson, S. (2001). The efficacy of oro-facial and articulation exercises in dysarthria following stroke. International Journal of Language and Communication Disorders , 36 (s1), 292–297. Rodgers, H., Soutter, J., Kaiser, W., Pearson, P., Dobson, R., Skilbeck, C., & Bond, J. (1997). Early supported hospital discharge following acute stroke: Pilot study results. Clinical Rehabilitation , 11 (4), 280–287. Rudd, A. G., Wolfe, C. D., Tilling, K., & Beech, R. (1997). Randomised controlled trial to evaluate early discharge scheme for patients with stroke. British Medical Journal , 315 (7115), 1039–1044. Sacchett, C., Byng, S., Marshall, J., & Pound, C. (1999). Drawing together: Evaluation of a therapy programme for severe aphasia. International Journal of Language and Communication Disorders , 34 (3), 265–289. Ski, C., & O’Connell, B. (2007). Stroke: The increasing complexity of carer needs. Journal of Neuroscience Nursing , 39 (3), 172–179. van den Heuvel, E. T., Witte, L. P. d., Schure, L. M., Sanderman, R., & Jong, B. M.-d. (2001). Risk factors for burn-out in caregivers of stroke patients, and possibilities for intervention. Clinical Rehabilitation , 15 (6), 669–677. Woloshin, S., Schwartz, L., Katz, S., & Welch, H. (1997). Is language a barrier to the use of preventive services? Journal of General Internal Medicine , 12 (8), 472–477. Katy Stewart is a senior speech pathologist at Rehabilitation in the Home, Royal Perth Hospital. Dr Natalie Ciccone is the Discipline Leader for Speech Pathology at Edith Cowan University. Prof Elizabeth Armstrong is the Head of the School of Psychology and Social Science at Edith Cowan University.

Correspondence to: Katy Stewart Senior Speech Pathologist Royal Perth Hospital Rehabilitation in the Home Department GPO Box X2213, Perth, Western Australia, 6001 email: khackling@hotmail.com

6

JCPSLP Volume 16, Number 1 2014

Journal of Clinical Practice in Speech-Language Pathology

Translating research into practice

Speech pathology clinical practice in sub-acute brain injury rehabilitation Kerrin Watter, Paula Addis, Anna Copley and Emma Finch

There is limited research regarding the clinical practice of speech-language pathologists (SLPs) within sub-acute brain injury rehabilitation. This constrains the ability of SLPs to provide services based on high levels of evidence, with evidence from similar populations utilised to guide clinical practice instead. This article reports the results of a survey investigating the clinical practice and service delivery of SLPs working in Australian Brain Injury Rehabilitation Units (BIRUs). SLPs across eight BIRUs participated. Wide variation was found in staffing levels across the services, impacting service delivery and therapy intensity. Similarities were demonstrated in many areas of therapy provision, with patterns seen in prioritisation and service intensity. A variety of services and interventions were provided to meet the wide range of client goals and needs, in line with international guidelines. Ongoing research into sub-acute rehabilitation is warranted. Introduction The effectiveness of multidisciplinary rehabilitation for adults with acquired brain injury (ABI) and the efficacy of ABI rehabilitation have been investigated via a number of systematic reviews of the literature. Findings indicate that early, coordinated sub-acute multidisciplinary rehabilitation results in earlier functional gains and reduced length of stay, and improves patient outcomes after brain injury; and that patients receiving specialised ABI inpatient rehabilitation make significant functional gains (Turner-Stokes, Nair, Sedki, Disler & Wade, 2005; Turner-Stokes, 2008). Additionally, such rehabilitation positively influences patients later in the recovery process, and has been found to significantly improve functional outcomes, social cognition and return to work for patients with brain injuries (Cullen, Meyer, Aubut, Bayley & Teasell, 2011).

Sub-acute rehabilitation services for adults recovering from ABI or traumatic brain injury (TBI) are recognised internationally as “specialised” services (Kelly, 1992; Royal College of Physicians and British Society of Rehabilitation Medicine [RCP BSRM], 2003), and are often referred to as a “BIRU” (Brain Injury Rehabilitation Unit). BIRU services provide complex, specialised rehabilitation to a range of clients including people with severe brain injury, low awareness states, challenging behaviour and/or concurrent complex medical needs (British Society of Rehabilitation Medicine [BSRM], 2009). Within Australia, BIRU services are provided as part of a continuum of care for adults with ABI/TBI, are located within metropolitan areas and provide a specialised “statewide” service to adults of broad working age. With an estimated 2.2% of the Australian population (1 in 45 people) having an ABI with associated disability, and almost 75% of these aged under 65 years (O’Rance & Fortune, 2007), demand for services is high. There are, however, only a small number of dedicated BIRUs across Australia, and not all states and territories have a dedicated BIRU service. Differences exist at a state, regional and district level regarding models of care, admission criteria, funding models for services, and availability of services for adults with ABI/TBI, including acute, sub-acute, transition and community/outpatient facilities. Service delivery within Australian BIRUs Clinical practice within Australian BIRUs is governed by a range of formal documents, which influence practice from a broad service level to the level of direct patient care. National and international guidelines and standards provide a framework for delivering sub-acute brain injury rehabilitation services as a whole. These include recommendations regarding governance, staffing, facilities Rehabilitation Medicine [AFRM], 2011), and aspects of service delivery including staffing, areas for intervention and timing of interventions (BSRM, 2009; Colorado Department of Labor and Employment [CDLE], 2005; RCP BSRM, 2003). and equipment, policies and procedures, quality management activities (Australasian Faculty of

THIS ARTICLE HAS BEEN PEER- REVIEWED PATHOLOGY SUB-ACUTE REHABILITATION SERVICE DELIVERY KEYWORDS BRAIN INJURY SPEECH

Kerrin Watter (top) and Paula Addis

7

JCPSLP Volume 16, Number 1 2014

www.speechpathologyaustralia.org.au

SLP practice in brain injury rehabilitation

us, the experience and clinical expertise of SLPs working within BIRUs may be utilised to help develop a knowledge base. The purpose of this study was to begin to investigate current service delivery practices of SLPs working within BIRUs in Australia, with a focus on identifying types of intervention provided by SLPs, as well as investigating how SLPs provide their services within BIRUs. This research grew from a SLP quality activity and benchmarking project within a BIRU service, responding to a clinical service need to identify service delivery and therapeutic intervention practices within other BIRUs, to assist in reviewing and maximising BIRU SLP services. Methods This study had ethical clearance from the Queensland Health Metro South Human Research Ethics Committee. Participants Participants were SLP teams or services (n = 8) within dedicated adult inpatient/sub-acute BIRUs within Australia. Individual SLPs working within BIRUs were identified by the investigator from online databases (e.g., professional and health service websites), previous benchmarking contacts, SLP brain injury interest groups, phone and email contacts. SLPs that identified their service provided other service delivery models for adult brain injury rehabilitation (e.g., acute/critical care; outpatient, community or transition services, vocational services) were excluded. Of the ten BIRU centres identified, SLPs from eight centres participated in this study. This included seven BIRUs and one inpatient rehabilitation centre that identified itself as providing significant statewide service to adults with brain injury, but was not an exclusive brain injury service. The centres included private and publically funded units from five states across Australia. Procedure SLPs who had been identified as working within Australian BIRUs were contacted via email and/or telephone and invited to participate in a survey regarding their SLP team’s service delivery practices in BIRU. SLPs approached from all ten units agreed to participate in the survey, and were sent the survey electronically (via email), with one response from each unit requested. Reminder emails to participants were utilised to maximise the response rate. SLPs from eight units returned completed responses and consented to participate in this research. Surveys were completed by a member of the BIRU SLP team; respondents included both clinicians and managers who reported on the practice of their SLP team. Survey responses were returned electronically or mailed in hard copy and were identifiable to the investigator; results were de-identified for reporting. Instrument/Measure The survey was designed to investigate a range of aspects of clinical service delivery of SLPs in BIRUs, and record and reflect the responses of the SLP team working within each BIRU (not those of the individual therapist). Survey questions were designed to incorporate aspects of service delivery and clinical practice reported in international SLP brain injury guidelines and service documents (ASHA, 2004; RCSLT, 2006), and were influenced by Brougham et al.’s (2011) study into SLP therapy practice in inpatient rehabilitation in adult spinal cord injury rehabilitation.

Within Australia, national professional guidelines do not exist to govern speech-language pathology (SLP) clinical practice within ABI/TBI rehabilitation. Consequently, clinical practice and “best practice” guidelines from international colleagues help guide SLP practice in Australian BIRUs (Academy of Neurologic Communication Disorders and Sciences [ANCDS], 2013; American Speech-Language- Hearing Association [ASHA], 2004; ASHA, n.d.a; ASHA, n.d.b; Katz et al., 2002; Royal College of Speech Language Therapists [RCSLT], 2006; Ylvisaker, Hanks & Johnson- Greene, 2003). While these guidelines provide direction for SLP service provision during rehabilitation for adults with ABI/TBI, including assessment, goals and types of inter­ ventions, they are not specific to the Australian health system. Overall, there is limited research internationally regarding specific SLP rehabilitation practice and service delivery during sub-acute brain injury rehabilitation; information regarding types of interventions utilised by SLPs during this timeframe is scarce. One multidisciplinary study from the Traumatic Brain Injury Models System (TBIMS) into rehabilitation outcomes and therapy intensity in TBI investigated the service delivery practices of allied health staff (including SLPs) in three brain injury specific rehabilitation centres over a seven year period (Cifu, Kreutzer, Kolakowsky-Hayner, Marwitz & Englander, 2003). Cifu et al. (2003) identified that 94% of all patients accessed SLP services, and that the average intensity of SLP services was 35 minutes per day (including direct and indirect patient contact times); however, specific aspects of service delivery including types of therapeutic interventions and prioritisation methods were not reported. More recently, Steel, Ferguson, Spencer and Togher (2013) have investigated the clinical practice of Australian SLPs in early (inpatient) TBI rehabilitation. This study, however, focused primarily on SLP assessment of patients with cognitive-communication disorders during post traumatic amnesia, rather than general service provision, and was not specific to sub-acute rehabilitation. Specific recommendations are available for evidence- based SLP interventions in ABI/TBI, including cognitive- communication disorders, cognition and executive functioning interventions (Cicerone et al., 2011; Cullen et al., 2011; MacDonald & Wiseman-Hakes, 2010; Welch- West, Ferri, Aubut & Teasell, 2011). This research, however, tends to encompass patients beyond the sub-acute phase of rehabilitation (i.e., patients who are further along in their recovery and participating in therapy at an outpatient or day hospital setting). The validity and clinical efficacy of utilising these interventions has not been formally investigated within the inpatient setting. This is not surprising, given the challenges of investigating therapy interventions during the “spontaneous recovery” timeframe. With health services increasingly under pressure to deliver efficient, evidence-based and cost-effective services, there is a need begin to identify those interventions and practices that provide the best rehabilitation outcomes for patients during sub-acute rehabilitation. Before research into the effectiveness of specific treatments within a BIRU setting can occur, information regarding current service delivery models and clinical practice activities needs to be known. While formal studies are currently unable to guide

Anna Copley (top) and Emma Finch

8

JCPSLP Volume 16, Number 1 2014

Journal of Clinical Practice in Speech-Language Pathology