Information, communication, advocacy, and complaint: how the spouse of a man with aphasia managed his discharge from hospital

Background: The impact of stroke and aphasia has been recognised as a family problem for many years with studies highlighting spouses’ need for information at different times along the recovery journey, for practical and emotional support, recognition, and respite. In particular, the decision-making around discharge from hospital, or planning for rehabilitation, is not always collaborative even though family involvement assists family members to plan and adjust to their new caring role. Aims: This study aims to explore how the wife of a man with aphasia managed his discharge from hospital in the acute phase post-stroke. It provides an opportunity for health professional learning and sensitisation through the detailed analysis of a de-identified but a real case that happened to reflect key issues reported by families in previous research: lack of information, poor communication with healthcare professionals, and the need for advocacy. Methods and procedures: The data for this paper are drawn from two sources: a single in-depth interview with the wife collected as part of an earlier large multi-site study that included interviews with 48 family members of people with aphasia after stroke; and two complaint letters she wrote to the hospital and two letters received back. This study uses a narrative analysis of the interview, and a systemic functional linguistics (SFL) analysis of the letters in order to shed light on the key issues of information, communication, and advocacy. Outcomes and results: The narrative analysis of the interview and the SFL analysis of the letters together help to unpack the reasons why the wife felt motivated to write a complaint letter to the hospital where her husband had been admitted post-stroke. The letters themselves demonstrate careful choices of language for both parties, with the hospital discounting the wife’s concerns and closing down the exchange. They also reflect a profound misunderstanding by the hospital about the functional consequences of aphasia and its impact on the family. Conclusions: It is important that family members, taking on a caring role for people with aphasia after stroke, are supported with clear information and good communication in acute settings. This may enable them to be engaged in the recovery process as partners with healthcare teams and more effectively support adjustments to poststroke life in the longer term

Therapeutic relationships in aphasia rehabilitation: Using sociological theories to promote critical reflexivity

© 2020 The Authors. International Journal of Language & Communication Disorders published by John Wiley & Sons Ltd on behalf of Royal College of Speech and Language Therapists Background: Therapeutic relationships are fundamental in aphasia rehabilitation, influencing patient experience and outcomes. While we have good understandings of the components of therapeutic relationships, there has been little exploration of how and why therapists construct and enact relationships as they do. Sociological theories may help develop nuanced understanding of the values, assumptions and structures that influence practice, and may facilitate critical reflexivity on practice. Aims: To explore the potential for theoretical approaches from outside speech–language therapy to enable a deeper understanding of the nature and enactment of therapeutic relationships in aphasia rehabilitation. Methods & Procedures: An explanatory single case study of one speech–language therapist–patient dyad in an in-patient stroke rehabilitation setting. Data included observations of five interactions, two interviews with the client and three interviews with the speech–language therapist. Analysis was guided by analytical pluralism that applied aspects of three sociological theories to guide data analysis and make visible the contextual factors that surround, shape and permeate the enactment of therapeutic relationships. Outcomes & Results: The analysis of this dyad made visible individual, interactional and broader structural features that illustrate the dynamic processes that practitioners and patients undertake to enact therapeutic relationships. Clinical practice could be viewed as a performance with each person continually negotiating how they convey different impressions to others, which shapes what work is valued and foregrounded. The patient and therapist took up or were placed in different positions within the interactions, each with associated expectations and rights, which influenced what types of relationships could, or were likely to, develop. Organizational, rehabilitation and individual practitioner structures assigned rules and boundaries that shaped how the therapist developed and enacted the therapeutic relationship. Whilst the therapist had some agency in her work and could resist the different influencing factors, such resistance was constrained because these structures had become highly internalized and routinized and was not always visible to the therapist. Conclusions & Implications: While therapists commonly value therapeutic relationships, social and structural factors consciously and unconsciously influence their ability to prioritize relational work. Sociological theories can provide new lenses on our practice that can assist therapists to be critically reflexive about practice, and to enact changes to how they work to enhance therapeutic relationships with clients. What this paper adds What is already known on the subject Therapeutic relationships are critical in aphasia rehabilitation. We have a good understanding of the different components of therapeutic relationships and how relationships are perceived by patients and practitioners. What this paper adds to existing knowledge This study is novel in its use of sociological lenses to explore contexts and complexities inherent in building and maintaining therapeutic relationships. These are often invisible to the practitioner but can have a significant impact on how relational work is enacted and what forms of relationship are possible. What are the potential or actual clinical implications of this work? This study will support clinicians to critically reflect on how they enact therapeutic relationships and may enhance awareness of the often-hidden factors which influence the ways in which they work

It\u27s quite good fun: A qualitative study of a singing/songwriting programme for people with Parkinson\u27s disease and their spouses

Background: : Group singing for people with Parkinson\u27s disease (PD) is an established intervention not only to improve voice and speech difficulties but also for emotional and social benefit. Less is known about the experiences of group singing on the couple—the person with PD and their spouse or partner together—and studies have not specifically tracked impact through time or in combination with songwriting. Aims: : To understand the impact of group singing/songwriting on couples (participants with PD and their spouses) to unpack whether this broader view might help explain why such interventions are reported as beneficial. Using a trajectory approach, a form of longitudinal research and focused ethnography, the research sought a deeper appreciation of participation through time for the couple in a singing/songwriting group. Methods & Procedures: : Four couples attending a singing/songwriting programme were observed for 10 weeks, and interviewed formally and informally weekly. Data were analysed thematically across-case through framework analysis but also within-case to explore the couples’ experiences and narratives over time. Outcomes & Results: : The theme of ‘improved relationships’ between the couples was new and extended previous studies’ findings of positivity, physical benefit, sense of self and social opportunity. The stories of each couple highlighted the importance of musical reminiscence and emotional respite, and demonstrated changes with time through the singing and songwriting group. Conclusions & Implications: : The benefits of offering singing/songwriting groups may be felt not only by participants with PD but also by their spouses/partners even if they choose not to attend themselves. Such benefits may include improved relationships related to the shared joy of music, musical reminiscence and emotional respite. The addition of songwriting encourages creativity and agency. A longitudinal trajectory approach is one way to appreciate how these benefits may unfold over time for participants. WHAT THIS PAPER ADDS: What is already known on the subject Group singing for people with PD has been shown to have physical, emotional and social benefits as measured on mainly pre-post-assessments of vocal, speech, respiratory function and quality of life questionnaires. What this study adds to the existing knowledge This study adds three new aspects: studying the benefits for the couple (both people with PD and their spouse/partner); taking an in-depth focused ethnographic approach over time to collect couples’ narratives and experiences; and exploring the potential for adding songwriting to the intervention. What are the potential or actual clinical implications of this work? A qualitative trajectory approach may help clinicians understand why such interventions are experienced as beneficial. Clinicians running singing groups for people with PD should offer attendance to spouses/partners because of the potential for such groups to improve relationships and build new points of connection for the couple, as well as provide peer support for spouses. Songwriting is a useful addition for creativity, cognitive flexibility and self-expression

The role-emerging, inter-professional clinical placement: Exploring its value for students in speech pathology and counselling psychology

This paper examines the experience of a speech pathology and a counselling psychology student in a role-emerging, interprofessional clinical placement. Qualitative descriptive analysis was used to explore student and staff perceptions of the placement which took place within a prerelease detention centre, housing up to six women and their young children, within the Department of Corrective Services. Student reflections were obtained before, during and post placement completion. Reflections from academic staff involved in the project were gathered following placement completion. The analysis of these sources of data revealed that, while challenging, this placement strengthened students’ collaborative problem-solving, advocacy skills and clinical competence

Learned communicative non-use is a reality in very early aphasia recovery: Preliminary results from an ongoing observational study.

Recent neurorehabilitation literature in animal motor models suggests very early (before day five post-stroke) intensive (over 300 repetitions) leads to histological damage (Krakauer et al, 2012) and late rehabilitation (commenced after day 30 post-stroke) is much less effective than intervention started earlier in recovery. The intricacies of directly applying animal models of stroke recovery and rehabilitation to human language have been well documented (Varley, 2011). In humans, the first 90 days post-stroke however, are believed to be the "window of opportunity” (Meyer et al., 2010) for neuronal changes to occur as part of neuroplasticity. Research investigating human stroke recovery models, indicates that the timing of commencement of therapy combined with therapy intensity are likely to be pivotal elements in overall stroke recovery (Kerr et al, 2011). Therapy intensity to facilitate stroke recovery in humans is noted to be far less than that in animal models (Krakauer at al., 2012). Research investigating overall activity levels in stroke survivors in the acute recovery demonstrated that patients spent only 13% of their time engaged in activity and spent 60% of the time alone (Berhardt et al, 2004). Further research showed that task specific movement practice occurred in only 51% of sessions during acute and sub-acute therapy sessions (Lang et al., 2009). Similarly, aphasia research in early stroke recovery demonstrated that on average stroke survivors received between 14 minutes (Godecke et al, 2011) and 1.3 hours (Bowen et al, 2012) of therapy per week during the first month post-stroke. To better understand the interactions that occur in early stroke recovery, this study focused on observed communicative activities that may underlie the neuroplasticity principles of “use it or lose it”, and “learned non-use” (Kleim 2011)

“They are dealing with people’s lives…”: Diagnostic and post-diagnostic healthcare experiences in primary progressive aphasia

Purpose: The healthcare experience is a multifaceted and varied process, particularly for people living with complex conditions such as primary progressive aphasia (PPA). Different experiences influence pathways through the health system, impacting client outcomes. To our knowledge, no previous studies have directly explored the healthcare experiences of people with PPA and their families. This study aimed to explore the experiences of people living with PPA from the perspective of both the person with PPA and their families during diagnostic and post-diagnostic phases, and to identify factors influencing service access and perceptions of quality of care. Method: The study followed an Interpretive Phenomenological Analysis (IPA) approach. In-depth, semi-structured interviews were completed with three people with PPA and their primary care partner, and two further care partners of people with PPA. Result: Five superordinate themes were identified: characterising the assessment experience, getting a diagnosis, moving beyond the diagnosis, participant interactions with clinicians, and overall service provision. The five superordinate themes comprised 14 subthemes. Conclusion: The study provides preliminary insights into the complexity of the PPA healthcare journey, and the need for increased accessibility of information and supports following diagnosis. The findings inform recommendations for improving quality of care and the development of a PPA service framework or care pathway

Ode to confidence : Poetry groups for dysarthria in multiple sclerosis

Purpose: Approximately 40–50% of people with multiple sclerosis (MS) have dysarthria impacting confidence in communication. This study explored how people with MS experienced a novel therapeutic approach combining dysarthria therapy with poetry in a group format. Method: Participants were recruited through MSWA (formerly known as the Multiple Sclerosis Society of Western Australia), a leading service provider for people living with all neurological conditions in Western Australia. They attended eight weekly sessions led by a speech pathologist and a professional poet. The study was co-designed and qualitative, using observational field notes recorded during sessions and semi-structured in-depth interviews with participants after programme completion. The results from an informal, unstandardised rating scale of communication confidence, along with standardised voice and speech measures, were used to facilitate discussion about confidence in the interviews. Result: Nine participants with MS completed the group programme. Analysis of the qualitative data revealed participants’ positive views regarding the pairing of speech pathology and poetry. Thematic analysis identified four core themes: living with MS and its “series of griefs”; belonging to a group – “meeting with a purpose”; the power of poetry; and poetry as a medium for speech pathology. Conclusion: Poetry in combination with dysarthria therapy represents a novel, interprofessional approach for improving communication confidence in individuals with MS

The impact of stuttering on development of self-identity, relationships, and quality of life in women who stutter

Purpose: The experiences of women who stutter have been underresearched. Clinicians have little guidance from the research literature on issues specific to women who stutter and are likely to have less clinical contact with this group than with men who stutter because of the higher prevalence of stuttering in men. This study explored the experiences of a small group of women who stutter with a particular focus on what the main current issues are and how gender may have influenced experiences with stuttering. Method: This qualitative study involved recruitment of 9 women who stutter (aged 35-80 years) through a support network of people who stutter in Western Australia. All the women had received some form of speech therapy for stuttering, and they came from diverse cultural backgrounds. Individual, semistructured interviews were conducted, recorded, and transcribed verbatim. Data were managed with NVivo 10, and thematic analysis was used to identify recurring themes across the data. Data were coded independently by the researchers and refined through group discussion. Participants also completed the Overall Assessment of the Speaker\u27s Experience of Stuttering. Results: A core theme of gendered sense of self in society emerged from the data. This related to 3 broad themes: perceptions of self that were primarily negative, the impact of stuttering on relationships and social connection with others (relationships with family, peers, colleagues, and intimate partners), and the management of stuttering (internal coping, motivations, and experiences with external support). Conclusions: Stuttering has a pervasive impact on all aspects of women\u27s lives and affects how they view themselves, their relationships, their career potential, and their perceptions of how others view them in society. The women interviewed in this study often had negative self-perceptions and felt that their quality of life had been impacted by their stuttering. However, the women\u27s stories and experiences of stuttering were shaped by a broader context of perceived sociocultural expectations of females in society. Strong verbal communication was highlighted as a crucial factor in developing identity and forming relationships. This study highlights the need to be aware of the experiences of, and issues facing, women who stutter for clinicians to be more equipped, focused, and successful in their stuttering interventions for women

Please don\u27t assess him to destruction : The R.A.I.S.E. assessment framework for primary progressive aphasia

Purpose: Speech-language pathologists (SLPs) assess people with primary progressive aphasia (PPA) through measurements of speech, language, communication, and well-being, with the aims of identifying challenges and strengths, monitoring change, and informing treatment directions and supports. The purpose of this clinical focus article is to highlight the necessity for person-centered assessment specific to PPA and to conceptualize a framework that acknowledges the multifaceted nature of assessment for this population. In this framework, the unique challenges posed by a diagnosis of PPA are addressed with the aim to provide practical guidance for clinicians and to support reflection on current practices. Method: In clinical and research practice, assessment of people with PPA requires an ever-evolving approach that is centered on the client. In this clinical focus article, a discussion-based consensus process was used to synthesize authentic longitudinal experiences of people with PPA to explore assessment approaches, tools, and philosophies. Results: This analysis of person-centered assessment identifies seven essential components of assessment in PPA that set the foundation for the five steps of the R.A.I.S.E. Assessment framework. These components each contribute to a clear definition of assessment that reveals clients\u27 competencies with a strengths-based focus; prioritizes the reciprocity of benefits; promotes dynamic assessment; and recognizes the complexity, evolution of assessment over time, and advocacy. Conclusions: This clinical focus article takes a novel look at assessment in PPA by stepping away from assessment practices that focus on revealing deficits and decline and, instead, provides practical recommendations through the conceptualization of a PPA-specific assessment framework. The R.A.I.S.E. Assessment framework is grounded in principles of uplifting clients through person-centered assessment, keeps pace with best practice in PPA intervention, and contributes to a supportive experience for clients and families in the face of a progressive diagnosis over time

"Please Don't Assess Him to Destruction": The R.A.I.S.E. Assessment Framework for Primary Progressive Aphasia

PURPOSE: Speech-language pathologists (SLPs) assess people with primary progressive aphasia (PPA) through measurements of speech, language, communication, and well-being, with the aims of identifying challenges and strengths, monitoring change, and informing treatment directions and supports. The purpose of this clinical focus article is to highlight the necessity for person-centered assessment specific to PPA and to conceptualize a framework that acknowledges the multifaceted nature of assessment for this population. In this framework, the unique challenges posed by a diagnosis of PPA are addressed with the aim to provide practical guidance for clinicians and to support reflection on current practices. METHOD: In clinical and research practice, assessment of people with PPA requires an ever-evolving approach that is centered on the client. In this clinical focus article, a discussion-based consensus process was used to synthesize authentic longitudinal experiences of people with PPA to explore assessment approaches, tools, and philosophies. RESULTS: This analysis of person-centered assessment identifies seven essential components of assessment in PPA that set the foundation for the five steps of the R.A.I.S.E. Assessment framework. These components each contribute to a clear definition of assessment that reveals clients' competencies with a strengths-based focus; prioritizes the reciprocity of benefits; promotes dynamic assessment; and recognizes the complexity, evolution of assessment over time, and advocacy. CONCLUSIONS: This clinical focus article takes a novel look at assessment in PPA by stepping away from assessment practices that focus on revealing deficits and decline and, instead, provides practical recommendations through the conceptualization of a PPA-specific assessment framework. The R.A.I.S.E. Assessment framework is grounded in principles of uplifting clients through person-centered assessment, keeps pace with best practice in PPA intervention, and contributes to a supportive experience for clients and families in the face of a progressive diagnosis over time