Increasing opportunities for functional communication learning in rehabilitation for people with aphasia in Early Supported Discharge (ESD)-(OASIS)
3.0 Introduction
The overall aim of this thesis is to investigate how functional communication learning can be optimised for people with aphasia post-stroke during routine rehabilitation. The systematic review (chapter 2) explored and elucidated how learning processes are reported in speech and language therapy interventions with a functional outcome. Reports from published research studies have a bearing on how and whether research is translated in to clinical practice (Brady et al., 2014) and how rehabitation is conducted by healthcare professionals. As is clear from the Systematic Review, detailed reporting of interventions relevant to functional communication learning and outcomes is variable, with rationales and processes often implicit in reports. The exploratory study was developed to investigate in detail the nuaces and complexities of routine rehabilitation and to investigate and make apparent how learning may be optimised in the day-to-day practice of routine rehabilitation. This chapter provides a background to the exploratory study, outlining the literature that underpins this study and setting out the aims and research questions.
3.1 Conversation partners of people with aphasia
People’s social networks change with age, with some people experiencing significant reductions in the opportunities for communication and conversation (Davidson, Worrall, & Hickson, 2003; Northcott & Hilari, 2011). PWA are at greater risk of a reduction in the number of communication partners than people post-stroke without aphasia, because they particpate in a smaller range of communication activities (Davidson et al., 2003). This reduction may be due to the PWA experiencing: unsuccessful communication and consequent reduced social competence (Simmons-Mackie & Damico, 2007); receiving hurtful comments from those close to them (Northcott & Hilari, 2011); restrictions in physical mobility and environmental barriers such as lack of public transport (Northcott & Hilari, 2011) and; changes in identity and social roles (Cruice et al., 2005; Hilari & Byng, 2009). All of these factors can make PWA reluctant to engage in communication, which raises their risk of losing their friendship groups (Cruice, Worrall, & Hickson, 2006). Approximently a third (30%) of PWA reported that they have no friends at all (Hilari & Northcott, 2006).
PWA also experience changes in their communication partners after onset of aphasia. The communication partners of PWA may be different from healthy adults without aphasia. For example, Davidson, Worrall and Hickson (2003) found that PWA communicated more with Healthcare Professionals (HCPs) and with a smaller number of acquaintances, strangers and neighbours. However, the number of significant others that people with aphasia and healthy adults communicated with were similar (Davidson, Worrall & Hickson, 2003). These findings are supported by Godecke, Armstrong, Hersh, and Bernhardt (2013) who found that nurses were the key communication partner for PWA, whereas for people without aphasia it was family and friends.
3.2 Opportunities for functional communication practice
Despite HCPs being reported as key communication partners for PWA, there are few opportunities for communication in healthcare settings (Byng, Farrelly, Fitzgerald, Parr, & Ross, 2003). PWA communicate with HCPs in this setting for less than 50% of their time (Knight, Worrall, & Rose, 2006). Indeed, early after their stroke, people have been reported to spend 60% of their time alone (Berhardt et al., 2004). Furthermore, people without aphasia spent nearly three times more of their day communicatively engaged than people with aphasia (Godecke et al., 2013). When PWA did engage in conversation with HCPs it was during therapy and at direct contact time. However, the time spent actively communicating in therapy in the first month post-stroke was variable. Godecke et al. (2012) found that a PWA received on average 14 minutes per week, whereas Bowen et al. (2012) found that it was 1.3 hours per week.
3.3 Communication and contextual factors
Communication and language use is shaped by social purpose and context; people often adapt their discourse depending on the purpose and their conversation partners (Fairclough, 2003). For example, when a researcher lectures to students, the discourse will be tailored to this topic and the tone will be professional, but the tone will change when they converse over dinner with close friends. Conversation is also influenced by the communication partner, as meaning is co-constructed by the two (or more) parties involved (Clark & Wilkes-Gibbs, 1986; Goodwin, 1981). The responsibility for successful interactions therefore lies with both communication partners.
Environmental factors such as attitudes and accessibility can potentially act in ways either enabling or disabling to communication, as highlighted in the ICF (Stucki et al., 2002; World Health Organization, 2001). Barriers to successful communication can include conversation
partners who can act in disabling ways if they do not see conversation as a collaborative process, holding the PWA responsible for communicative breakdown. In the acute hospital setting, further barriers have been identified. These include: healthcare providers’ knowledge of and skills in communicating with PWA (Cottrell & Davies, 2004; Parr, Byng, Gilpin & Ireland, 1997); attitudes of healthcare professionals (Parr, Byng, Gilpin & Ireland, 1997; Sundin, Jansson, & Norberg, 2000); the physical environment (Cottrell & Davies, 2004); and services and policies (Horton, Lane, & Shiggins, 2015; Kagan & LeBlanc, 2002).
3.4 Impact of missed opportunities for communication in healthcare settings
PWA may have difficulties communicating views, needs and desires to their HCPs, leading to sub-optimal care (O’Halloran, Hickson, & Worrall, 2008), which may impact on their immediate health (Stewart, 1995) and medical recovery (Gordon, Ellis-Hill, & Ashburn, 2009). Article 3 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (United Nations, 2006) emphasises the importance of: ‘Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons’. In addition, the WHO (World Health Organization, 2007) highlights that all patients should have access to information that is easy to understand and suitable for their needs. Consequently, to uphold the human rights of a PWA and to be fully effective, communication between PWA and HCPs in healthcare settings should go beyond the transactional role of addressing basic needs, such as need for the toilet or identifying pain. HCPs need to collaborate in a conversation with a PWA to negotiate care needs, rehabilitation goals and expression of views and attitudes. Despite the key importance of this communication, HCPs often focus on physical care alone (Gordon et al., 2009; Pound & Ebrahim, 2000). As well as essential information exchange, positive interactions between HCPs and PWA can foster positive therapeutic relationships and increase motivation (Mold, McKevitt, & Wolfe, 2003).
Lack of communication and opportunities for conversation can have further detrimental effects due to learned non-use (Pulvermüller et al., 2001). Experiences of failure when using an impaired communication skill can lead to ‘absence of reward’ for the PWA (Pulvermüller & Berthier, 2008). This means that the person can be less likely to use their impaired skills, instead relying on their retained skills (Pulvermüller & Berthier, 2008). When neural reorganisation does occur later post-stroke, if learned non-use has become established, a functional impairment will remain (Taub, Uswette, Mark, & Morris, 2006). Practice is the most important variable that can prevent learned non-use from becoming permanent and
allow functional reorganisation to occur (Hamzei, Liepert, Dettmers, Weiller, & Rijntjes, 2006). Therefore, optimising opportunities for communication practice could prevent further impairments due to learned non-use. HCPs have a responsibility to foster an environment where meaningful communication can occur (Gordon et al., 2009).
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.5 Rationale for exploratory study
Studies of interpersonal communication/conversation in aphasia have generally focused on interactions between PWA and their caregivers (Beeke et al., 2013; Cunningham &Ward, 2003; Lock et al., 1999; Wilkinson & Wielaert, 2012). Research is growing on the interaction between PWA and their HCPs and has been carried out in the context of elderly care facilities (Hickson, Worrall, Wilson, Tilse, & Setterlund, 2005), on a specialist stroke ward (Gordon et al., 2009) and in acute hospital setting (Hersh, Godecke, Armstrong, Ciccone, & Bernhardt, 2016; Knight et al., 2006; O’Halloran et al., 2008). HCPs are one of the key communication partners for PWA in the early stages (first weeks and months) during hospital stays and rehabilitation and PWA have numerous interactions with HCPs. PWA and HCPs also need to engage in conversations regarding healthcare decisions, instructions to improve or maintain health, such as medication, and expressing views and healthcare needs during this time. Successful interactions are thus essential to ensure that PWA are getting the best care possible while exercising their autonomy.
Having completed an extensive literature search, no studies have explored interactions between PWA and their HCPs in the context of ESD. ESD provides a seven-day service for a minimum of 45 minutes a day, for two to twelve weeks depending on rehabilitation potential and goals (RCP Stroke Guidelines 2008 3.13.1 page 3.9). The most important factor in (re)learning is practice (Schmidt& Lee, 2013), and this also prevents the negative effects of learned non-use (Pulvermüller et al., 2001). PWA are disadvantaged by their communication difficulties, with fewer opportunities to practice communication in everyday conversations. Such rehabilitation occasions have the potential to function as task-specific practice opportunities (Godecke et al., 2013). PWA therefore need functional communication practice in their communicative contexts and meaningful interactions with their HCPs. Increasing the participation of PWA in their rehabilitation, which is key to success, is receiving growing attention (Horton et al., 2015). There are opportunities in the healthcare setting for active participation and communication from the PWA that are inconsistently realised, with caseload pressures, time constraints and environmental factors being cited as barriers to communication (Horton et al., 2015). There may be
opportunities in healthcare professional interactions that are not being optimised and that could enhance (re)learning for a PWA.
The focus of this research is interaction between HCPs and PWA. No studies to date have examined the learning process in aphasia rehabilitation taking account of the relationships between aphasic impairment, activity, HCP-PWA personal factors and context, and how these relate to the success or otherwise of interventions. ESD is a relatively new stroke pathway, and research into processes and outcomes is in its infancy in this field. Novel research such as this has the potential to add to and develop the field of aphasia, providing information on how (re)learning in the context of ESD can be enhanced for PWA.
The systematic review discussed in Chapter 2 was developed to answer the first research question. The exploratory study was developed to answer research questions 2, 3 and 4:
1) What conditions exist during routine rehabilitation sessions for enhancing functional communication learning for aphasia?
2) What is the nature of these conditions, how do they arise and how can they be produced?
3) What are the barriers to and facilitators of the uptake of opportunities to enhance