International Journal of Speech-Language Pathology, 2014; 16(3): 219–230

The current practices of speech-language pathologists in providing information to clients with traumatic brain injury

JESSICA SHORT1, JANE MCCORMACK1 & ANNA COPLEY2

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1Charles

Sturt University, Albury, Australia, and 2The University of Queensland, Brisbane, Australia

Abstract The provision of information about cognitive-communication disorders (CCDs) following traumatic brain injury (TBI) is important given the impact these communication impairments can have on the rehabilitation of people with TBI. This study describes the results of an online survey which investigated the current practices of 74 Australian speech-language pathologists (SLPs) working with adults with TBI. Thirty-seven SLPs outlined their practices in information provision. SLPs reported they provide information to adults with TBI about CCDs, the impact of CCDs on participation in life activities, and rehabilitation from CCDs. In addition, SLPs identified barriers and facilitators to information provision. Barriers identified included time, impairments resulting from TBI, and personal characteristics of the client. Facilitators included family functioning and support and the multidisciplinary team. Findings of this research indicate a need for some changes in the format and content of information that SLPs provide to adults with TBI, to ensure they can achieve fundamental levels of health literacy and better health outcomes.

Keywords: Traumatic brain injury (TBI), speech-language pathologists, service delivery, health literacy.

Health literacy Health literacy is defined as the ability to obtain, process, and understand basic health information needed to make appropriate health decisions (Ratzan & Parker, 2000). It is fundamental to accessing services, managing chronic conditions, and maintaining good health (Institute of Medicine, 2004). Health literacy is comprised of multiple components which help to ensure successful negotiation of the healthcare system. Information provision is one core component of health literacy and is the focus of this paper. Other core components of health literacy include informed consent, negotiating skills (Kickbusch, 2001), reading and numeracy skills, and comprehension (Speros, 2005). Poor health literacy results in poor health outcomes (Volandes & Paasche-Orlow, 2007), less health knowledge, and less involvement in decisionmaking (Peerson & Saunders, 2009). Demographic characteristics associated with poor health literacy include education level, age, geographic location, low socioeconomic status, and disabilities, such as communication impairments (Mika, Kelly, Price, Franquiz, & Villarreal, 2005; Paasche-Orlow, Parker, Gazmararian, Nielsen-Bohlman, & Rudd, 2005). Health literacy has been shown to improve

by increasing people’s access to information and capacity to use it effectively (Nutbeam, 2000). Health literacy and TBI Traumatic brain injury (TBI) is a major cause of hospitalization, disability, and death in Australia, with the most recent national data reporting 107 people with TBIs per 100 000 of the population (Australian Institute of Health and Welfare, 2007; Helps, Henley, & Harrison, 2008). The vast majority (80–100%) of adults with TBI exhibit some form of communication impairment following their injury (Sarno, 1980; Sarno, Buonaguro, & Levita, 1986); the most prevalent of which are cognitive-communication disorders (CCD) (Freund, Hayter, MacDonald, Neary, & Wiseman-Hakes, 1994). The effect of CCDs on communication and higher level language skills span across the continuum of recovery, reducing clients’ motivation and engagement in therapy (Dahlberg, Hawley, Morey, Newman, Cusick, & Harrison-Felix, 2006; Fleming, Strong, & Ashton, 1998). The impact of CCDs continues long after the injury, causing difficulties with social integration, re-entering the workforce, maintaining relationships, independence, and academic success, making them

Correspondence: Associate Professor Jane McCormack, Charles Sturt University, PO Box 789, Albury, NSW, 2640, Australia. Email: [email protected] ISSN 1754-9507 print/ISSN 1754-9515 online © 2014 The Speech Pathology Association of Australia Limited Published by Informa UK, Ltd. DOI: 10.3109/17549507.2014.882413

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one of the most debilitating and complex consequences of TBI (Gentleman, 2001; MacDonald & Wiseman-Hakes, 2010). Many of the characteristics associated with poor health literacy are also characteristics of adults who have experienced TBI (Australian Institute of Health and Welfare, 2007). This increases the likelihood of this population experiencing difficulties with health literacy.

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Information provision The benefits of health professionals sharing appropriate and timely health information following TBI include improved client understanding of health conditions (Lefebvre, Levert, Pelchat, & Lepage, 2008), increased motivation and adherence to treatment plans (Pegg, Auerbach, Seel, Buenaver, Kiesler, & Plybon, 2005), and decreased client anxiety (Ponsford, Willmott, Rothwell, Cameron, Kelly, Nelms, et al., 2002). The provision of information describing common symptoms of head injury, their likely time course, and suggested coping strategies has also been shown to lessen the associated symptoms of TBI (Ponsford et al., 2002). Furthermore, information provision following TBI may improve insight, a common area of difficulty for adults with TBI (Hart, Seignourel, & Sherer, 2009; Steel, Ferguson, Spencer, & Togher, 2013). Despite the reported benefits of providing health information to clients, research exploring the experiences of health consumers has found they are concerned with the information they are receiving (Kiesler & Auerbach, 2006; Lefebvre, Pelchat, Swaine, Gelinas, & Levert, 2005; O’Callaghan, McAllister, & Wilson, 2011). Findings from this research reveal four key areas of concern: the amount of information being provided, timing of information provision, the format in which information is delivered, and the focus of the information being provided. Quantity of information. Clients with TBI and their carers report they do not receive enough information about their injury (Lefebvre et al., 2005; O’Callaghan et al., 2011). In an Australian survey of 184 carers of adults with TBI, 25% (n ⫽ 29) of carers who accessed inpatient rehabilitation reported receiving inadequate information about their family member’s or friend’s injury, prognosis, and services available (O’Callaghan et al., 2011). A Canadian study, also investigating the experiences of care following TBI, found information provision at each stage of the client’s continuum of care was limited (Lefebvre et al., 2005). This is similar to findings in the literature related to brain injury post-stroke (Hoffmann, McKenna, Worrall, & Read, 2004; Knight, Worrall, & Rose, 2006). While a majority of stroke clients want information while in hospital, it has been reported that only some (22.8%) receive it (Hoffmann et al.,

2004). Furthermore, Knight et al. (2006) found that 56% of interaction times (ward round/therapy session) between seven stroke clients and their health professionals was spent without any communication. During periods of communication, only 18% of the time was spent providing health information, this reduced to 7% for people with communication impairment. Timing. The provision of information following TBI is the most frequently reported role of the SLP in the acute setting and is reported to have positive effects up to 3 months post-injury (Ponsford et al., 2002; Steel et al., 2013). Steel et al. (2013) investigated the current practices of SLPs working with adults in post-traumatic amnesia (PTA), including their perceptions of their role at this time. Participants within this study acknowledged that clients and families often do not receive timely information about cognitive-communication changes post-TBI. Adequate passing of time facilitates readiness for information (O’Callaghan, McAllister, & Wilson, 2012). However, the amount of time required varies for each individual. The need for individuals to receive different information at different times has also been recognized within the stroke literature (Eames, Hoffmann, Worrall, & Read, 2010; Rose, Worrall, Hickson, & Hoffmann, 2010). Format. Research exploring formatting preferences of information following TBI is limited. Research examining the formatting of information post-stroke has reported it is often too complex for the needs of clients, particularly those with communication impairment (Eames et al., 2010). However, the use of aphasia-friendly principles, such as simplified text, pictures, and adequate spacing of information, have been shown to help people with communication impairment comprehend printed health information following stroke (Rose, Worrall, & McKenna, 2003). Content. The preferred practice guidelines for CCD (College of Audiologists and Speech-Language Pathologists, 2002) recommends that information be provided to clients and their significant others regarding CCDs, the resulting activity restrictions, and specific cognitive and communication strategies. Research conducted by Ponsford et al. (2002) and Duff, Proctor, & Hayley (2002) shows SLPs are currently achieving this. In the acute stage of care, Steel et al. (2013) found SLPs provided general information about TBI, post-traumatic amnesia (PTA), recovery, and the role of the SLP. However, carers of adults with TBI have expressed their concerns about the difficulty in obtaining information about the long-term consequences of TBI and the resources available to them (Knight, Devereux, & Godfrey, 1998).

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Current practices of SLPs in TBI

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Factors impacting information provision

Participants

The shortfall of health information is often perceived by clients to be a result of health professionals being busy and time restricted (Eames et al., 2010; Knight et al., 2006). However, some medical and allied health professionals (including SLPs) have reported feeling uncomfortable delivering information following a diagnosis of TBI, resulting in the inadequate provision of information (Lefebvre et al., 2005). Health professionals’ discomfort with delivering information relates to concerns about making a mistake, upsetting the family unnecessarily, giving false hope and uncertainty about the progress of the individual (Lefebvre et al., 2005). Hersh (2009) proposed communication breakdowns occur in information provision, due to a mutual lack of awareness between SLPs and clients of what information the other already knows or what they need to share. Client and carer factors, such as poor recall, not seeking out information, and lack of time were also identified to impact information provision (Eames et al., 2010). Research to date regarding the provision of information to adults with TBI, particularly in relation to CCDs, is limited. Given the value of information provision in improving health literacy and health outcomes, there is a need for information provision with this population to be explored. Therefore, the aims of this study were to determine:

Australian SLPs currently working with adults who have sustained a TBI were invited to participate in the survey. Seventy-four SLPs responded to the survey, half (n ⫽ 37) of whom completed the final section of the survey on information provision, which is the focus of this paper. Characteristics of this smaller participant sample were primarily representative of the larger sample (see Table I).

1) What are the current practices of Australian SLPs working in the field of TBI when providing information to clients about CCDs? (a) Who is the information provided to? (b) When in the recovery period is information provided? (c) What format is information provided in? (d) What is the content of the information provided? 2) What are the barriers and facilitators influencing the decisions and experiences of SLPs when providing information about CCDs to clients with TBI?

Method Data utilized in this paper were collected as part of a larger survey entitled “An investigation of the current practices of speech pathologists when working with clients with traumatic brain injuries (TBI) in Australia”. This research was conducted with ethical approval from The University of Queensland Behavioural & Social Sciences Ethical Review Committee (Project number 2012000864) and Charles Sturt University Human Research Ethics Committee (Protocol number 405/2012/07).

Instrument An online, self-administered survey was developed following a comprehensive review of the TBI and stroke literature. This ensured the survey covered all the domains it was created to measure, thus producing content validity (Imms & Greaves, 2010). Questions were devised from themes arising from the literature review, previous questionnaires investigating health professionals’ perspectives and provision of health information, and consultation with experts in the field of TBI. The survey sought information on the recipients, format, timing, and content of information relating to CCDs. SLPs’ views regarding the factors influencing their provision of information and their perceived barriers to information provision were also sought. Piloting of the survey took place with four research colleagues working in the field of TBI. Colleagues reviewed a draft survey, providing feedback on formatting and content of the survey, length, time taken to complete, and clarity of the questions. Modifications were made to this draft on the basis of the feedback received, ensuring the survey was appropriate and evaluated the aims of the study (Imms & Greaves, 2010). The final version of the entire survey took 20–30 minutes to complete, with the information provision section consisting of 18 open and close-ended questions. Data collection procedure Initial distribution of the survey took place in November 2012, using a snowball sampling approach (Howie, 2010). Information about the survey was distributed via Speech Pathology Australia’s National e-news, the Centre for Clinical Research Excellence (CCRE) in Aphasia Rehabilitation, and university clinical educators. A request was made for recipients to distribute the survey to relevant, interested colleagues working in the field of TBI, thereby increasing the sample size. Follow-up emails were circulated 1 month after the initial distribution of the survey. Recipients chose to join the research by clicking the supplied link and proceeding to complete the survey. However, participation was not established until a completed copy of the survey was submitted. Completion of the survey was taken as consent to participate.

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Table I. Demographic and caseload characteristics of participants.

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Demographic and caseload characteristics Age 20–25 26–35 36–45 ⬎ 46 years Gender Female Male Years of clinical experience 1 year, I am a new graduate Between 2–5 years Between 6–10 years Over 11 years Highest academic qualification Undergraduate/Bachelors degree in SLP Graduate/Masters degree in SLP Masters degree in something other than SP (e.g., health management, research) Doctor of philosophy/ professional doctorate Other Years of TBI experience ⬍ 1 year 2–5 years 6–10 years ⬎ 11 years Missing data Percentage of adults with TBI on caseload ⬍ 10% 11–30% 31–60% 61–90% ⬎ 91% Missing data Work setting Government funded Not-for-profit organization Private practice/organization or hospital Other Missing data State New South Wales Victoria South Australia Queensland Western Australia Northern Territory Australian Capital Territory Tasmania Missing data Region Metropolitan Rural Remote Missing data Member of multidisciplinary team Yes No Missing data

Current practice survey (n ⫽ 74)

Information provision section (n ⫽ 37)

n

%

n

%

12 35 15 12

16.2 47.3 20.3 16.2

3 20 8 6

8.1 54.1 21.6 16.2

72 2

97.3 2.7

36 1

97.3 2.7

5 20 25 24

6.8 27.0 33.8 32.4

0 9 14 14

0.0 24.3 37.8 37.8

53

71.6

25

67.6

11 2

14.9 2.7

6 2

16.2 5.4

1

1.4

0

0.0

7

9.5

4

10.8

11 32 11 19 1

14.9 43.2 14.9 25.7 1.4

1 20 6 10 0

2.7 54.1 16.2 27.0 0.0

25 19 11 10 7 2

33.8 25.7 14.9 13.5 9.5 2.7

7 8 8 7 6 1

18.9 21.6 21.6 18.9 16.2 2.7

56 3 13

75.7 4.1 17.6

27 2 8

73.0 5.4 21.6

0 2

0.0 2.7

0 0

0.0 0.0

13 16 1 33 3 0 2 4 2

17.6 21.6 1.4 44.6 4.1 0.0 2.7 5.4 2.7

7 9 0 19 1 0 0 1 0

18.9 24.3 0.0 51.4 2.7 0.0 0.0 2.7 0.0

48 24 0 2

64.9 32.4 0.0 2.7

27 10 0 0

73.0 27.0 0.0 0.0

67 5 2

90.5 6.8 2.7

35 2 0

94.6 5.4 0.0

(Continued)

Table I. (Continued)

Demographic and caseload characteristics Member of specialist TBI team Yes No Missing data Client stage of care* Acute care Sub-acute care/inpatient rehabilitation Community-based/outpatient rehabilitation Other

Current practice survey (n ⫽ 74)

Information provision section (n ⫽ 37)

n

%

n

%

18 54 2

24.3 73.0 2.7

14 23 0

37.8 62.2 0.0

24 34

32.4 45.9

11 17

29.7 45.9

37

50.0

22

59.5

2

2.7

0

0.0

*Participants could choose more than one response as they may work across a number of settings.

Data analysis Data obtained from the survey were analysed using a mixed methods approach (Creswell, 2003). Descriptive statistics, such as frequency counts and percentage distributions, were used to analyse closed questions, describing the format, timing, content, and recipients of information. Thematic analysis was used to analyse open ended questions, facilitating understanding of issues affecting practice (Braun & Clarke, 2006). Themes emerging from the data were identified through careful reading and re-reading of data pertaining to influences on the decisions of SLPs and barriers they experience when providing information about CCDs to people with TBI. This enabled familiarity with the overall sense of what was being said by the participants (Minichiello, Aroni, & Hays, 2008). The data were reflected on, noting initial impressions and ideas, and initial codes began to be conceptualized (Braun & Clarke, 2006). Once these codes were identified, they were collated into potential themes using actual language expressed by participants. Further analysis was performed to organize data by making connections between smaller categories (Braun & Clarke, 2006; Minichiello et al., 2008). Themes were revised multiple times, at which point thematic maps were developed, helping present a meaningful summary and dependable interpretation of the data (Minichiello, Sullivan, Greenwood, & Axford, 1999). Following analysis of qualitative data by the first author, one question was independently analysed for consensus of themes by the second and third author. Comparable themes arose from this analysis; establishing rigorous coding. The first author re-analysed questions after the initial analysis to ensure consistency of coding. Participant quotes are paired with the author’s description and interpretation of the data to accurately represent the experiences conveyed by participants and thereby ensure authenticity.

Current practices of SLPs in TBI Results Analysis of data from 37 respondents is reported. The first section describes the current practices of SLPs when providing information to clients about CCDs following TBI. The second section describes the barriers and facilitators to provision of information, with excerpts included from the scope of responses collected.

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Demographic information Participants were predominantly female (n ⫽ 36, 97.3%), most of whom were aged between 26–45 years (n ⫽ 28, 75.7%) and held an undergraduate degree in speech-language pathology as their highest qualification (n ⫽ 25, 67.6%). There were no new graduates in the sample and most graduated more than 6 years ago (n ⫽ 28, 75.6%). Most had between 2–5 years TBI experience (n ⫽ 20, 54.1%). However, the percentage of adults with TBI on caseloads ranged from less than 10% to greater than 91%. The majority of participants worked as part of a multidisciplinary team (n ⫽ 35, 94.6%), in a government funded facility (n ⫽ 27, 73%), and in a metropolitan area (n ⫽ 27, 73%). Participants were mainly located in Queensland (n ⫽ 19, 51.3%), Victoria (n ⫽ 9, 24.3%), or New South Wales (n ⫽ 7, 18.9%) and did not work as part of a specialized TBI team (n ⫽ 14, 37.8%). Participants worked across a variety of settings, impacting the practices of information provision. Five (13.5%) worked in acute, three (8.1%) worked across acute and sub-acute settings, seven (18.9%) worked in sub-acute, five (13.5%) worked across sub-acute and outpatient settings, 14 (37.8%) worked in outpatients, one (2.7%) worked across acute and outpatient settings, and two (5.4%) worked across acute, sub-acute, and outpatient settings. Current practices of information provision Twenty-one SLPs reported providing information about CCDs to every client with TBI on their caseload (see Table II). Three indicated they provide information about CCDs only to those clients with TBI presenting with a CCD. The client (n ⫽ 36, 97.3%), their carer (n ⫽ 36, 97.3%), and friends and family (n ⫽ 33, 89.2%) were reported to be the biggest recipients of information following TBI. Other health professionals were provided with information about CCD by 75.7% (n ⫽ 28) of participants, and some participants (n ⫽ 2) provided information to funding bodies (e.g., Motor Accident Insurance (MAI)). Timing. Information about CCDs was most commonly provided in the rehabilitation phase (n ⫽ 18, 48.6%) or on community visits, post-discharge (n ⫽ 18, 48.6%) (see Table II). The largest proportion of SLPs provided information about communication impairment to clients weekly (n ⫽ 12, 32.4%). A

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further 24% provided it on request and 14% provided it daily. Most participants also reported ensuring general information was available to clients outside of their scheduled speech-language pathology sessions (n ⫽ 33, 89.2%), and many SLPs (15 of 37 respondents) reported in open ended questions that they repeatedly provided information throughout the continuum of care: Typically need to revisit, repeat, and tailor education to the individual’s performance at each phase (SP4).

Format. All 37 participants reported they provide information following TBI to clients verbally, and a majority provide it in writing (n ⫽ 35, 94.6%) or pictorially (e.g., diagrams and illustrations) (n ⫽ 26, 70.3%) (see Table II). Of those SLPs who provided information in writing, 100% of them talked through the written information with the client. Information was not often provided using technology such as audio-visual or online resources (n ⫽ 18, 48.6%), although participants reported an increased utilization of technological resources outside of scheduled sessions (e.g., recommending websites to clients; n ⫽ 21, 63.6%). Content. The content of information provided by SLPs to clients and carers emerged through participant’s responses to open-ended questions and as such was analysed thematically. Results suggested SLPs provided information about CCDs based on three broad themes: the impairment, rehabilitation, and activities and participation. Information about impairment was related to the nature and severity of the CCD and its effects on the client’s level of functioning. Rehabilitation incorporated information specific to CCD treatment and the recovery process, the role of the SLP and the multidisciplinary team (MDT) and support and services available to the client. The other element of information content was how impairment and rehabilitation affected and subsequently aimed to improve people’s participation in community and personal activities. General information was also reported to be provided about TBI, swallowing, and behavioural changes. While most SLPs revealed that carers and families were provided with the same content of information as clients, a minority of SLPs provide information specific to the needs of family and friends of individuals with TBI. This included information on caring for their loved one, support, and meeting their needs in the aftermath of TBI. Factors influencing information provision For each element of information provision, format, timing, recipients, and content, SLPs were asked to describe factors influencing their decision-making. Five key themes emerged. These included (1) time,

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J. Short et al. Table II. Current practices of information provision (n ⫽ 37). Current practices of information provision Recipients Percentage of clients with TBI provided with information about CCDs

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Who receives information

Timing When in the recovery process information is provided about CCDs

Frequency of information provision about CCDs

Information available outside of scheduled sessions

Format Format information is provided in

Style of delivery used

n

%

100% 90–100% Other 70–80% 50% Missing data Client Carer Friends and family Health professionals Workplaces, employers Schools, teachers Other (please specify)

21 6 4 3 2 1 36 36 33 28 20 13 8

56.8 16.2 10.8 8.1 5.4 2.7 97.3 97.3 89.2 75.7 54.1 35.1 21.6

Within rehabilitation/sub-acute phase On community visits, post-discharge Prior to discharge from hospital Within first few days of injury After the first few days, within the first week At transfer to rehabilitation Other At discharge from hospital After 1 week, within the acute care phase Missing data Weekly Greater than weekly, please specify When requested Daily Twice weekly Never Missing data Recommended websites Referral to other services On request from other staff, e.g., nurses Brochure stand Recommended telephone numbers Other (please specify) Bookshelf on ward Missing data

18 18 15 14 14 14 14 13 11 5 12 9 9 5 1 0 1 21 19 18 16 12 6 3 4

48.6 48.6 40.5 37.8 37.8 37.8 37.8 35.1 29.7 13.5 32.4 24.3 24.3 13.5 2.7 0.0 2.7 56.8 51.4 48.6 43.2 32.4 16.2 8.1 10.8

Verbally (face to face) In writing Pictorially, e.g., diagrams & illustrations Verbally (over the phone) Online Audio-visual Other (please specify) Talking through written information Discussion Provision of resources Question and answer Demonstration Didactic Other (please specify)

37 35 26 21 18 11 2 36 33 27 26 17 4 2

100.0 94.6 70.3 56.8 48.6 29.7 5.4 97.3 89.2 73.0 70.3 45.9 10.8 5.4

Note: Participants were able to choose more than one response.

(2) personal characteristics, (3) impairment, (4) family functioning and support, and (5) clinical considerations (see Figure 1). Each theme was observed to act as a facilitator and/or barrier to information provision. Time. Time emerged as more than a point in recovery (i.e., timing). Participants also referred to time as a

resource (e.g., SLP time) and as a period (e.g., time of adjustment). Time was found to be important, not only when deciding when information is provided but also who will receive it, the content, and format. Time emerged as both a barrier and a facilitator to information provision. Too little time acted as a barrier to information provision; however, an adequate allocation of time acted as a facilitator:

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regarding format, timing, and content of information provided. However, knowing the preferences and needs of clients can act as a facilitator to information provision for SLPs, as it ensures they are being responsive to clients and their families and respecting their wishes. SLPs achieved this by asking questions of the client or ensuring there was time and opportunity for clients to ask questions of them. Resulting discussions provided the opportunity for more information to be given as needed. When deciding who receives information, the consent of the client was identified as imperative, due to the need for confidentiality. Need to develop sufficient rapport with [the] client to build trust, allow disclosure of information and to collaborate on what information will be provided and in what manner (SP36).

Figure 1. Barriers and facilitators to information provision. SLPs described the influences on their decision-making regarding information provision about CCDs following TBI as barriers or facilitators using the same five themes. These ranged from central/ internal to the client (client features) through to factors external to the client.

You need to keep checking that the timing [of information provision] is right; often too much too soon is a total waste of time (SP37).

Information provided to clients and their families was reported to be inhibited by their ability to engage with and process information, due to insufficient time to adjust to their injury. This affected their readiness to receive information and was closely related to insight, overall limiting when information could be provided. Most clients and/or carers will tell you they have never heard the information before, which is unlikely. It has more to do with their capacity to process and remember it (SP26).

SLPs access to time was also indicated to act as a barrier to providing information, as it limited the “development of materials that facilitate understanding and recall”. However, increased time since a client’s injury and increased time available to SLPs facilitated the provision of information. Patients may not be receptive to information at certain times, but [they] should always have the opportunity to receive it (SP23).

Personal characteristics. Personal characteristics incorporate factors intrinsic to the client, including personal traits and needs and preferences. They emerged as a barrier and a facilitator to information provision. Characteristics such as age, education, and cultural background were described by participants as a barrier to providing information about CCDs. SLPs felt these characteristics influenced their decisions

Impairment. Impairment was referred to in terms of cognition (memory, attention, concentration, and executive function) and communication (expressive and receptive language), and emerged as a barrier to information provision. The nature and severity of impairments were identified as impacting the client’s comprehension and retention of information and their ability to engage in information exchanges. This affected the format, content, timing, and recipients of information. Participants reported accommodating CCDs by providing information regularly in small amounts, using less complex language, multiple modes, and employing visual aids such as pictures and diagrams. Furthermore, it was identified that clients and their families lack insight into the CCDs that were present because they were more abstract than the physical aspects, further limiting information provision regarding CCDs. The focus of patients and families is initially on the physical aspects of their injury … often awareness of cognitive-communication deficits occurs ... later on in recovery (SP1).

Family functioning and support. Families were often reported to be the recipients of information about a client’s CCD, particularly if the client was in PTA or had reduced insight into their impairments. The family’s availability for support and their degree of coping was identified to facilitate information provision. However, if they weren’t present and involved in the exchange of information, this was considered a barrier. The family’s emotions and readiness for information and availability and involvement in the client’s life were found to influence the timing, format, and content of information. The family’s capacity to optimize the information clients receive, by sharing information with them or attending communication partner training makes them valuable as a facilitator of information provision.

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How the family is coping will determine how much information you can provide and in what format (SP35).

In contrast, a family’s emotional and physical unavailability and lack of support emerged as factors making them less likely to be able to perform the role of support and facilitator, impeding information provision:

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Families go from being thankful they’re [client’s] alive, to wanting them to walk and thinking they’re OK, to slowly realizing the other cognitivecommunication deficits as time goes on and real life situations and interactions increase (SP1).

Clinical considerations. Clinical considerations included the SLP, information resources, the setting, and the MDT. Each emerged as a barrier and facilitator to information provision except the MDT. The MDT was referred to as a source of information when making decisions about who receives information, when they receive it, and the content, making it pertinent to the facilitation of information. I would always discuss with the MDT first … This would allow me to determine the prognosis for the patient and what information has already been given to the patient/family (SP35).

Caseload pressure and staffing levels were revealed to contribute to a reduction in time available for SLPs to develop information resources and provide information. This created a barrier to the optimal provision of information. In contrast, the time SLPs spend with clients and the rapport they build facilitated the content and timing of the information they provide. Rapport was identified to help SLPs know when information was required and enabled trust in the information provided: Needs to tie in with the program and at a time when the relationship is sound with the therapist so information is trusted and valued by others (SP37).

The settings information exchanges took place in were described as limiting access to quality information. This acted as a barrier for clients with a communication impairment post-TBI to receive suitable information. However, reliable, clear guidelines, direction at an appropriate level, and a realistic focus in information made available were identified as facilitators of quality information. Discussion This survey was an initial attempt to gain insight into SLPs’ provision of information about CCDs to clients with TBI in Australia. It provides an overview of the current practices of SLPs and barriers/facilitators influencing their provision of information to this population. These factors are discussed in relation to their impact on health literacy.

Who is the information provided to? Clients, their carers, family, and friends are the most frequent recipients of information provided by SLPs following TBI. Many SLPs do not provide information about CCDs to all their clients with TBI. However, this may be due to the difficulties people with CCD have with comprehension, use of language, attention, information processing, and recall (MacDonald & Wiseman-Hakes, 2010). The provision of information to other people within the client’s environment is appropriate and supported by the literature (College of Audiologists and SpeechLanguage Pathologists, 2002; Foster, Armstrong, Buckley, Sherry, Young, Foliaki, et al., 2012; O’Callaghan et al., 2011). The preferred practice guidelines for CCDs (College of Audiologists and Speech-Language Pathologists, 2002) recommend education of significant others regarding the nature of the CCD to assist in optimizing compensatory communication strategies. Information provided to significant others also provides understanding and support and minimizes reactions and behaviours that may be maladaptive (College of Audiologists and Speech-Language Pathologists, 2002). This study, however, has identified SLPs provide clients and carers with almost identical information, few participants reported providing carer-specific information. Significant others have different needs to the person with the injury, and therefore require different information, such as ongoing information regarding caregiving (Cott, 2004).

When in the recovery period is information provided? Sub-acute and community phases of care are the points within the recovery of adults with TBI when most SLPs in this study provided information about CCDs. Other studies of adults with TBI have shown that information provided early within recovery, as soon as 1 week post-injury, has had positive effects on symptoms, including memory and concentration up to 3 months post-injury (Ponsford et al., 2002). The guidelines for mild TBI also state that information should be provided as soon as possible following the injury (Motor Accidents Authority NSW, 2008). However, many SLPs in this study reported clients at their particular stage of care are not suitable for information due to their lack of insight and awareness and, therefore, readiness for information. This finding is supported by the literature relating to CCDs which details the process of recognizing, grieving, adapting to, and accepting impairments following brain injury, making information exchange difficult for this population (O’Callaghan et al., 2012). Reduced insight and awareness, communication impairments, and impaired executive functions put people with TBI at increased risk of low health literacy, making readiness and timing essential when thinking about providing information to this population.

Current practices of SLPs in TBI Ensuring people are getting information when it is appropriate can be achieved through high levels of collaboration between professionals and clients, within and across healthcare teams, professions, and organizations (Cott, 2004). Providing individualized care and information at a time that the client is motivated and engaged to process it is also recommended. Prior to this, providing family specific information may be more appropriate.

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by the preferred practice guidelines for CCDs (College of Audiologists and Speech-Language Pathologists, 2002) which state cognitive-communication intervention should include information about CCDs and resulting activity restrictions, to promote adjustment to deficits and active involvement in goal setting. These three areas of content also reflect the International Classification of Functioning, Disability and Health (ICF) model (World Health Organization, 2001), reflecting a holistic consideration of practice.

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What format is information provided in? All SLPs within this study provide information verbally and most provide it in writing; therefore, it can be understood that these two modes occur simultaneously. Other studies have found supplementing verbal information with written information to be the most popular and effective means of providing information as it aids recall, a factor which is important to consider in providing information to people with CCDs (Eames, Hoffmann, Worrall, & Read, 2011; Hill, 1997; Hoffmann, McKenna, Herd, & Wearing, 2007). In addition to this, SLPs reported using aphasia friendly principles such as small amounts, visual aids, and simplified language to present information. People with CCD are recognized as having poor comprehension and retention of information (McDonald, Tate, Togher, Bornhofen, Long, Gertler, et al., 2008), providing information using these formats aids their access to information, thereby helping to improve their health literacy. In contrast, question and answer was the style of delivery used by 70% of clinicians in this study. Whilst this was not the sole format used by these SLPs, it remains that the onus of responsibility when using this style of delivery rests with the client. Insight, high level language skills, and communication skills such as initiation are well documented as being associated with CCD (Stratton & Gregory, 1994), making question and answer more challenging for these clients. This is supported by stroke literature which outlines clients may feel they don’t have the power to initiate questions/discussions and may need help from health professionals to direct them to appropriate information (Eames et al., 2010; Knight et al., 2006). SLPs could opt for styles of delivery that facilitate and improve health literacy, such as getting clients to explain their understanding in their own words, holding informative discussions, and using alternatives to speech and written formats (e.g., graphics and multimedia) (Medley & Powell, 2010; Mika et al., 2005; Protheroe & Rowlands, 2013).

What is the content of the information provided? SLPs provide information about CCD, its effects on activity, and participation and the rehabilitation process, including therapy and support services available to people with TBI. This content is supported

What are the barriers and facilitators influencing the decisions and experiences of SLPs when providing information about CCDs to clients with TBI? Anyone with a communication impairment is at risk of having low health literacy because their access to information and services is impaired (Mika et al., 2005). This is compounded for people with CCD because they have impaired comprehension, vague, tangential, or disorganized discourse, deficits in social communication, including initiation, turn taking, and topic management and difficulties using language or communication to assist memory and new learning (MacDonald & Wiseman-Hakes, 2010). Along with deficits in insight and higher level language skills, these impairments affect how people with CCD obtain, process, and understand health information. Therefore, readiness and timing is essential when making decisions concerning provision of information to these clients. Findings in this study emphasized timing as critical to all components of information provision. According to SLPs, emotional adjustment, insight, and readiness for information were barriers to providing information about CCDs. Emotional distress following TBI is high and poor emotional outcomes are common (Anson & Ponsford, 2006; O’Callaghan et al., 2012), affecting these clients’ ability to process information. Further to this, individuals who are more aware of their brain-injury-related difficulties are reported to display a higher level of non-productive coping, characterized by avoidance, worry, and selfblame (Anson & Ponsford, 2006). SLPs need to consider the client’s readiness to receive information. Time provides clients with the opportunity to come to terms with the impairments they have sustained, develop insight, and begin to accept their injury (Charmaz, 1995). This helps develop readiness for information; however, if readiness doesn’t emerge within an SLP’s stage of care, documentation of their inability to provide information should occur, so as to ensure it does get provided later in the care continuum (Hoffmann et al., 2007). An alternative is to ensure the family receive information at this stage of the care process. Social support and family and peer influences are reported to be factors impacting the health literacy of individuals (Sorensen, Van den Broucke, Fullam,

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Doyle, Pelikan, Slonska, et al., 2012). As families bear much of the responsibility for supporting brain injured people and subsequently those with CCD (Knight et al., 1998), they can facilitate the provision of information. This may further improve the health literacy of people with CCD. Results from previous studies suggest that clients who have the support and involvement of their family throughout rehabilitation improve their chances of obtaining better outcomes following their injury (Foster et al., 2012; Kreutzer, Stejskal, Ketchum, Marwitz, Taylor, & Menzel, 2009; Sherer, Evans, Leverenz, Stouter, Irby, Lee, et al., 2007). Family members are described within the health literacy literature as improving an individual’s access to health information by acting as a source of information and helping them access information through other means such as the internet and taking them to appointments (Speros, 2005; Yates, 1963). This can lead to better health literacy and overall improvements in health outcomes (Nutbeam, 2000).

Clinical implications: “Knowledge is empowerment” Health literacy is essential for empowerment; people must have access to health resources, such as information, in order to make appropriate health decisions. The results of this study indicate there are barriers and facilitators to SLPs providing information to people with TBI. SLPs working with people with TBI need to think about clients’ readiness for information. Lack of insight and awareness into their deficits and acceptance of their impairments limit this population’s readiness for information early within recovery. When insight is established, clients recognize the importance of intervention and seek information which results in an increased motivation for and improved engagement in therapy (Medley & Powell, 2010). This leads to an increase in therapy outcomes and ultimately an improved quality-of-life for the client. Empowerment can be facilitated through access to information: Information is essential in empowering clients. The more they know the greater role they have in their own rehabilitation, this in turn leads to greater engagement (ideally), and greater therapy outcomes (SP4).

Therefore, it is recommended that SLPs assess clients’ individual needs and circumstances, and provide health information that is specific to the client and their level of readiness, improving the efficiency of health information provision (Knight et al., 2006). It is recognized that clients with TBI may not reach readiness within the time a SLP is working with them (i.e., acute care), in these situations documentation of the lack of information provided is necessary. However, if clients do reach readiness specific

documentation of what was provided and when is also necessary so SLPs along the continuum are aware of what has been provided. This way, clients are assured of receiving information along the continuum of care, at a time that is fitting for them. Additionally, clients can receive information from their family. As family are often the primary support for the injured person they are well placed to receive information from professionals and have increased access to share it regularly with their injured family member. It is recommended carers and family support the injured member of their family by being actively involved in their care, receiving information when it is provided, actively seeking it if it isn’t, and sharing it with the client regularly (Lefebvre et al., 2008). SLPs should ensure they provide information content that addresses family member’s specific information needs as this can manage fears and concerns and decrease uncertainty (Foster et al., 2012; Lefebvre et al., 2005) thereby increasing their ability to manage; if they are not coping they cannot perform their role as a facilitator of information.

Limitations This study has a number of limitations which need to be considered when interpreting the results. The sample size of 37 SLPs is small, and limits the generalization of the results. However, the demographics of this smaller sample mirrored those of the larger sample, adding validity to the findings of this study. The findings from this study are also based on self-reported clinical behaviours of SLPs and their experiences of providing information to people following TBI which may give rise to response bias, answering with what they wish they could do or what they perceive they do. There may have been occasions throughout the survey where participant’s responses were relating to TBI more generally, rather than specific information about CCDs due to the broad wording of some of the questions in the survey. In addition, participants joined the study via an ‘opt in’ approach, this method of recruitment prevents the researchers knowing to what extent the participant sample represents the general population of SLPs working with people who have a TBI. However, while generalization is not possible, outcomes enable a preliminary understanding of the current practices and issues affecting practice of SLPs providing information about CCDs to adults with TBI.

Future directions Future research building on the exploratory findings within this study is required to help SLPs address the barriers they have identified as impacting information provision to people with CCDs. Observation of

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Current practices of SLPs in TBI current practices of SLPs when providing information to people with TBI would help validate the findings from this study and provide additional information to that obtainable within a self-report survey. This could be further consolidated by investigating client perspectives of information provision following TBI, particularly in relation to CCDs. Knowing what clients want and perceive as useful may help SLPs meet their needs. The creation of information provision standards and information resources, which could be tailored to client’s needs, would support SLPs in increasing availability and accessibility of resources to people with CCDs. Addressing this component of health literacy would help to improve overall health literacy for this population group. In addition to this, raising awareness of best practice in information provision would benefit the SLP, clients, and their carers.

Conclusion The social and cognitive skills required to achieve levels of health literacy that enable individuals to maintain good health are compromised in people with TBI, putting them at risk of poor health outcomes. The findings from this study show that SLPs are providing information about CCDs to clients with TBI in a range of formats, and at a time they deem appropriate, given the clients readiness for information. Impairments to insight and awareness prevent SLPs from providing information early in recovery, as recommended by the literature. However, families can facilitate the provision of information throughout this period. Currently, the content of information families receive is not specific to their needs, instead they are receiving information identical to the client. Addressing the barriers identified to limit the provision of information about CCD to people with TBI poses a challenge to SLPs, but by considering the readiness of individual clients, utilizing families as a resource, and increasing communication between SLPs across the care continuum, access to information may be increased.

Acknowledgements This research was part of the study titled “An investigation of the current practices of speech pathologists working with adults with traumatic brain injury (TBI) in Australia”, led by Dr Anna Copley. The authors wish to thank the participants for taking part in this study. This paper is based on an honours dissertation written by the first author and supervised by the subsequent authors. The research was supported by a Charles Sturt University Honours Scholarship and Speech Pathology Australia Undergraduate Research Grant awarded to the first author.

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Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper. References Anson, K., & Ponsford, J. (2006). Coping and emotional adjustment following traumatic brain injury. Journal of Head Trauma Rehabilitation, 21, 248–259. Australian Institute of Health and Welfare. (2007). Disability in Australia: Acquired brain injury. (Bulletin no. 55. Cat no. AUS 96.). Canberra: Australian Institute of Health and Welfare. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. Charmaz, K. (1995). The body, identity, and self: Adapting to impairment. The Sociological Quarterly, 36, 657–680. College of Audiologists and Speech-Language Pathologists. (2002). Preferred practice guideline for cognitive-communication disorders. Ontario: Author. Cott, C. A. (2004). Client-centred rehabilitation: Client perspectives. Disability and Rehabilitation, 26, 1411–1422. Creswell, J. W., (Ed.). (2003). Research design: Qualitative, quantitative and mixed methods approaces (2 ed.). Thousand Oaks, CA: Sage Publications. Dahlberg, C., Hawley, L., Morey, C., Newman, J., Cusick, C. P., & Harrison-Felix, C. (2006). Social communication skills in persons with post-acute traumatic brain injury: Three perspectives. Brain Injury, 20, 425–435. Duff , M. C., Proctor, A., & Haley, K. (2002). Mild traumatic brain injury (MTBI): Assessment and treatment procedures used by speech-language pathologists (SLPs). Brain Injury, 16, 773–787. Eames, S., Hoffmann, T., Worrall, L., & Read, S. (2010). Stroke patients’ and carers’ perception of barriers to accessing stroke information. Topics in Stroke Rehabilitation, 17, 69–78. Eames, S., Hoffmann, T., Worrall, L., & Read, S. (2011). Delivery styles and formats for different stroke information topics: Patient and carer preferences. Patient Education and Counseling, 84, 18–23. Fleming, J., Strong, J., & Ashton, R. (1998). Cluster analysis of self-awareness levels in adults with traumatic brain injury and relationship to outcome. Journal of Head Trauma Rehabilitation, 13, 39–51. Foster, A. M., Armstrong , J., Buckley, A., Sherry, J., Young , T., Foliaki, S., et al. (2012). Encouraging family engagement in the rehabilitation process: A rehabilitation provider’s development of support strategies for family members of people with traumatic brain injury. Disability and Rehabilitation, 34, 1855–1862. Freund, J., Hayter, C., MacDonald, S., Neary, M., & WisemanHakes, C. (1994). Cognitive-communication disorders following traumatic brain Injury: A practical guide. Tucson, AZ: Communication Skill Builders. Gentleman, D. (2001). Rehabilitation after traumatic brain injury. Trauma, 3, 193–204. Hart, T., Seignourel, P. J., & Sherer, M. (2009). A longitudinal study of awareness of deficit after moderate to severe traumatic brain injury. Neuropsychological Rehabilitation, 19, 161–176. Helps, Y., Henley, G., & Harrison, J. (2008). Hospital separations due to traumatic brain injury, Australia 2004–05. (Injury research and statistics series number 45). Adelaide: Australian Institute of Health and Welfare. www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id ⫽ 6442458806. Hersh, D. (2009). Breaking the connection: Why is it so difficult to talk about discharge with our clients with aphasia? International Journal of Speech-Language Pathology, 11, 147–154. Hill, J. (1997). A practical guide to patient education and information giving. Baillire’s Clinical Rheumatology, 11, 109–127. Hoffmann, T., McKenna, K., Herd, C., & Wearing, S. (2007). Written education materials for stroke patients and

Int J Speech Lang Pathol Downloaded from informahealthcare.com by University of Waterloo on 10/24/14 For personal use only.

230

J. Short et al.

their carers: Perspectives and practices of health professionals. Topics in Stroke Rehabilitation, 14, 88–97. Hoffmann, T., McKenna, K., Worrall, L., & Read, S. J. (2004). Evaluating current practice in the provision of written information to stroke patients and their carers. International Journal of Therapy and Rehabilitation, 11, 303–310. Howie, L. (2010). Narrative enquiry and health research. In P. Liamputtong (Ed.), Research methods in health: Foundations in evidence-based practice. South Melbourne, Australia: Oxford University Press. Imms, C., & Greaves, S. (2010). Measure twice, cut once: Understanding the reliability and validity of the clinical measurement tools used in health research. In P. Liamputtong (Ed.), Research methods in health: Foundations for evidence-based practice. South Melbourne: Oxford University Press. Institute of Medicine. (2004). Health literacy: A prescription to end confusion. Washington, DC: The National Academies. Kickbusch, I. S. (2001). Health literacy: Addressing the health and education divide. Health Promotion International, 16, 289–297. Kiesler, D. J., & Auerbach, S. M. (2006). Optimal matches of patient preferences for information, decision-making and interpersonal behavior: Evidence, models and interventions. Patient Education and Counseling, 61, 319–341. Knight, K., Worrall, L., & Rose, T. (2006). The provision of health information to stroke patients within an acute hospital setting: What actually happens and how do patients feel about it? Topics in Stroke Rehabilitation, 13, 78–97. Knight, R. G., Devereux, R., & Godfrey, H. P. D. (1998). Caring for a family member with a traumatic brain injury. Brain Injury, 12, 467–481. Kreutzer, J. S., Stejskal, T. M., Ketchum, J. M., Marwitz, J. H., Taylor, L. A., & Menzel, J. C. (2009). A preliminary investigation of the brain injury family intervention: Impact on family members. Brain Injury, 23, 535–547. Lefebvre, H., Levert, M. J., Pelchat, D., & Lepage, J. G. (2008). Nature, sources, and impact of information on the adjustment of family caregivers: A pilot project. Canadian Journal of Nursing, 40, 142–160. Lefebvre, H., Pelchat, D., Swaine, B., Gelinas, I., & Levert, M. J. (2005). The experiences of individuals with a traumatic brain injury, families, physicians and health professionals regarding care provided throughout the continuum. Brain Injury, 19, 585–597. MacDonald, S., & Wiseman-Hakes, C. (2010). Knowledge translation in ABI rehabilitation: A model for consolidating and applying the evidence for cognitive-communication interventions. Brain Injury, 24, 486–508. McDonald, S., Tate, R., Togher, L., Bornhofen, C., Long, E., Gertler, P., et al. (2008). Social skills treatment for people with severe, chronic acquired brain injuries: A mulicenter trial. Archive of Physical Medicine and Rehabilitation, 89, 1648–1659. Medley, A. R., & Powell, T. (2010). Motivational Interviewing to promote self-awareness and engagement in rehabilitation following acquired brain injury: A conceptual review. Neuropsychological Rehabilitation, 20, 481–508. Mika, V. S., Kelly, P. J., Price, M. A., Franquiz, M., & Villarreal, R. (2005). The ABCs of health literacy. Family and Community Health, 28, 351–357. Minichiello, V., Aroni, R., & Hays, T., (Eds.). (2008). In-depth interviewing. Sydney, Australia: Pearson Prentice Hall. Minichiello, V., Sullivan, G., Greenwood, K., & Axford, R., (Eds.). (1999). Handbook of research methods for nursing and health sciences. Frenchs Forest, Australia: Pearson Education Australia. Motor Accidents Authority NSW. (2008). Guidelines for mild traumatic brain injury following closed head injury: Acute/post-acute assessment and management. Sydney, Australia: Author. Nutbeam, D. (2000). Health literacy as a public health goal: A challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International, 15, 259–267.

O’Callaghan, A., McAllister, L., & Wilson, L. (2011). Experiences of care: Perspectives of carers of adults with traumatic brain injury. International Journal of Speech-Language Pathology, 13, 218–226. O’Callaghan, A., McAllister, L., & Wilson, L. (2012). Insight vs readiness: Factors affecting engagement in therapy from the perspectives of adults with TBI and their significant others. Brain Injury, 26, 1599–1610. Paasche-Orlow, M. K., Parker, R. M., Gazmararian, J. A., NielsenBohlman, L. T., & Rudd, R. R. (2005). The prevalence of limited health literacy. Journal of General Internal Medicine, 20, 175–184. Peerson, A., & Saunders, M. (2009). Health literacy revisited: What do we mean and why does it matter? Health Promotion International, 24, 285–296. Pegg, P. O., Auerbach, S. M., Seel, R. T., Buenaver, L. F., Kiesler, D. J., & Plybon, L. E. (2005). The impact of patient-centered information on patients’ treatment satisfaction and outcomes in traumatic brain injury rehabilitation. Rehabilitation Psychology, 50, 366–374. Ponsford, J., Willmott, C., Rothwell, A., Cameron, P., Kelly, A. M., Nelms, R., et al. (2002). Impact of early intervention on outcome following mild head injury in adults. Journal of Neurology, Neurosurgery and Psychiatry, 73, 330–332. Protheroe, J., & Rowlands, G. (2013). Matching clinical information with levels of patient health literacy. Nursing Management, 20, 20–21. Ratzan, S. C., & Parker, R. M. (2000). Introduction. In C. R. Selden, M. Zorn, S. C. Ratzan, & R. M. Parker (Eds.), National library of medicine current bibliographies in medicine: Health literacy (Vol. NLM). Bethesda, MD: National Institutes of Health, U.S. Department of Health and Human Services. Rose, T. A., Worrall, L. E., Hickson, L. M., & Hoffmann, T. C. (2010). Do people with aphasia want written stroke and aphasia information? A verbal survey exploring preferences for when and how to provide stroke and aphasia information. Topics in Stroke Rehabilitation, 17, 79–98. Rose, T. A., Worrall, L. E., & McKenna, K. T. (2003). The effectiveness of aphasia-friendly principles for printed health education materials for people with aphasia following stroke. Aphasiology, 17, 947–963. Sarno, M. T. (1980). The nature of verbal impairment after closed head injury. Journal of Nervous and Mental Disease, 168, 685–692. Sarno, M. T., Buonaguro, A., & Levita, E. (1986). Characteristics of verbal impairment in closed head injured patients. Physical Medicine and Rehabilitation, 67, 400–405. Sherer, M., Evans, C. C., Leverenz, J., Stouter, J., Irby, J. W., Lee, J. E., et al. (2007). Therapeutic alliance in post-acute brain injury rehabilitation: Predictors of strength of alliance and impact of alliance on outcome. Brain Injury, 21, 663–672. Sorensen, K., Van den Broucke, S., Fullam, J., Doyle, G., Pelikan, J., Slonska, Z., et al. (2012). Health literacy and public health: A systematic review and integration of definitions and models. BMC Public Health, 12, 80–105. Speros, C. (2005). Health literacy: Concept analysis. Journal of Advanced Nursing, 50, 633–640. Steel, J., Ferguson, A., Spencer, E., & Togher, L. (2013). Speech pathologists’ current practice with cognitive-communication assessment during post-traumatic amnesia: A survey. Brain Injury, 27, 819–830. Stratton, M. C., & Gregory, R. J. (1994). After traumatic brain injury: A discussion of consequences. Brain Injury, 8, 631–645. Volandes, A. E., & Paasche-Orlow, M. K. (2007). Health literacy, health inequality and a just healthcare system. The American Journal of Bioethics, 7, 5–10. World Health Organization. (2001). International classification of functioning disability and health. Geneva, Switzerland: WHO. Yates, A. J. (1963). Delayed auditory feedback. Psychological Bulletin, 60, 213–232.