Applications of the R.A.I.S.E. Assessment Framework to Support the Process of Assessment in Primary Progressive Aphasia.

PURPOSE: To establish the extent to which person-centered processes are integrated in assessment procedures, the Relationship, Assessment, Inclusion, Support, Evolve (R.A.I.S.E.) Assessment framework was used to evaluate measures that are typically used when assessing people living with primary progressive aphasia (PPA). METHOD: Forty-five assessment tools were evaluated through the lens of the five R.A.I.S.E. principles: building the client-clinician Relationship, Assessment choices, Including the client and care partners, providing Support, and Evolving procedures to match client capability and progression. The principles were operationalized as questions for raters to evaluate whether a measure met this aspect of the R.A.I.S.E. Assessment framework. RESULTS: Ten measures commonly used in the assessment of people living with PPA met all R.A.I.S.E. principles. These measures centered upon the elicitation of naturalistic discourse, conversation, client self-report, and clinician ratings. Thirteen measures did not meet any of the criteria, and represented standardized evaluation procedures do not provide the opportunity to connect to the client, elicit or provide feedback or support, nor to adapt in response to need or performance. CONCLUSIONS: Whether using standardized or informal assessment tools, a relational and qualitative approach to providing assessment is paramount to promote client success and therapeutic engagement. We provide guidance through the R.A.I.S.E. framework on practices to cultivate person-centered processes of assessment in the care of people living with PPA.

The kitchen assessment: an interactional analysis of assessment and feedback between an occupational therapist and a patient with aphasia post stroke.

PURPOSE: After stroke, patients undergo frequent multidisciplinary assessments. Little is known about patients' experiences of being assessed and the impact of assessment interactions and feedback for ongoing engagement in rehabilitation. This research aims to stimulate reflection on clinical interactions, even during routine clinical assessments, and the provision of assessment feedback. MATERIALS AND METHODS: This study involved a detailed analysis of an authentic kitchen assessment interaction between an occupational therapist and a patient with aphasia following stroke. It used a speech function analysis based on systemic functional linguistics resulting in both dynamic and synoptic data, and a consideration of interactive framing, to explore assessment explanation and feedback. RESULTS: The analysis revealed the clinician's interactive dominance in terms of number and type of moves, and misalignment of interactional framing at different points in the exchange. The session appeared to result in patient disengagement related both to the clinician's misjudged response to the patient's aphasia, and the context of assessment itself, characterised by reliance on question-and-answer exchanges, and a tendency to highlight deficit. CONCLUSIONS: Assessment sessions may be emotionally challenging for patients after stroke and feedback may be interpreted as bad news. Sensitive communication is required to support psychological wellbeing and engagement in rehabilitation.IMPLICATIONS FOR REHABILITATIONAfter stroke, patients are assessed by the multidisciplinary team to inform intervention and discharge planning.Little is known about the feedback patients receive or their views of this feedback, including when it is perceived as bad news.The presence of aphasia can complicate how assessments are conducted and how feedback is delivered and received.Greater awareness is needed of how feedback following assessment might impact patients' psychological wellbeing and engagement in rehabilitation.

"It's day to day problems:" Experiences of people with aphasia who live alone.

PURPOSE: Living alone is increasing and associated with health and social risks. Aphasia compounds these risks but there is little research on how living alone interacts with aphasia. This study is a preliminary exploration of this issue. METHOD: Five people with aphasia who lived alone participated in two supported semi-structured interviews, with the second interview including sharing an artefact that held significance for living alone with aphasia. Interviews were recorded, transcribed verbatim, and analysed through reflexive thematic analysis. RESULT: Four themes encompassed meaning-making about living alone with aphasia: relationships and reliance on others; risk, vulnerability, and uncertainty; loneliness and time alone; self-reliance and the need to keep busy. Participants had to continuously manage and renegotiate daily challenges around living alone with aphasia. CONCLUSION: Living alone increases the risk of loneliness. For people with aphasia, the buffer against loneliness provided by social connection and meaningful activity may be more difficult to achieve because of communication challenges. While experiences vary, reliance on others, managing practical and administrative tasks, and negotiating risks are all important issues when alone. The intersection of living alone, loneliness, and living with aphasia needs more research, and more explicit clinical focus when discussing and planning intervention and support.

A feasibility randomised waitlist-controlled trial of a personalised multi-level language treatment for people with aphasia: The remote LUNA study.

BACKGROUND: Stroke survivors with aphasia want to improve their everyday talking (discourse). In current UK practice, 90% of speech and language therapists believe discourse assessment and treatment is part of their role but are hampered by barriers in resources, time and expertise. There is a clinical need for well-articulated discourse assessment and treatments. LUNA is a multi-level treatment targeting words, sentences and discourse macrostructure in personal stories that addresses this clinical need. OBJECTIVES: This study aimed to assess the feasibility and acceptability of LUNA trial procedures in a randomised waitlist-controlled trial; and to evaluate preliminary efficacy. METHODS: This paper reports a phase II, waitlist-controlled, proof-of-concept feasibility trial. Participants with chronic aphasia (n = 28) were recruited from the community and randomised to an Immediate (n = 14) or Delayed (n = 14) group. LUNA treatment was delivered twice weekly for 10 weeks via the videoconferencing technology, Zoom. Feasibility was assessed in terms of participant recruitment and retention, adherence, missing data, and treatment fidelity. Preliminary treatment efficacy was assessed in terms of between group differences in outcome measures relating to discourse, language, and psychosocial state. RESULTS: The remote LUNA trial was feasible: 85% of those eligible consented to the trial; trial retention was 86%; 87% of treatment sessions were delivered as scheduled, and 79% of participants completed 80%+ of the treatment programme; data was missing only for participants who withdrew; treatment fidelity was high at 92% adherence; and only one clinical outcome measure demonstrated ceiling effects. ANCOVA analysis of the clinical outcome measures revealed group differences with medium and large effect sizes, indicating, improvements in the production of words, sentences, discourse macrostructure, overall language functioning (WAB-R), and psychosocial state (VAMS) following LUNA treatment. For most outcomes measured, similar treatment benefits were suggested in a secondary, non-parametric analysis. CONCLUSIONS: Large-scale evaluation of the clinical efficacy and cost-effectiveness of LUNA is warranted and supported by these findings. TRIAL REGISTRATION: Clinical trials registration: NCT05847023 (clinical trials.gov).

Muddles and puzzles: Metaphor use associated with disease progression in Primary Progressive Aphasia.

Background: Primary Progressive Aphasia describes a language-led dementia and its variants. There is little research exploring the experiences of living with this disease. Metaphor, words that represent something else, have been studied extensively in health-related narratives to gain a more intimate insight into health experiences. Aims: This study explored the metaphors used spontaneously by people with PPA, their care partners (family), and speech and language therapists/pathologists (SLT/Ps) providing support along the continuum of care. Methods & Procedures: This study examined two previously collected data sets comprising naturalistic talk where metaphors were not the specific focus, the first from focus groups conducted with people with PPA and their families and the second from focus groups conducted with SLT/Ps working with people with PPA. Transcribed data were analysed for metaphor use through an iterative narrative approach. Outcomes & Results: In all, 237 examples of metaphorical language were identified in the data, with 14 metaphors from people with PPA, 116 from the families and 106 from SLT/Ps. Different metaphors were used by participants to describe their experiences depending on which variant of PPA they were living with, and people also described their disease differently over time. SLT/Ps also used metaphors, however, their language reflected the structured, professional perspective of delivering speech and language therapy services. Conclusions & Implications: SLT/Ps should listen for and recognise the metaphorical language used by people with PPA and their families to ensure therapeutic alignment, see beyond the PPA to recognise the individual's needs, and provide person-centred and empathic support.

Comprehensive quality assessment for aphasia rehabilitation after stroke: protocol for a multicentre, mixed-methods study.

INTRODUCTION: People with aphasia following stroke experience disproportionally poor outcomes, yet there is no comprehensive approach to measuring the quality of aphasia services. The Meaningful Evaluation of Aphasia SeRvicES (MEASuRES) minimum dataset was developed in partnership with people with lived experience of aphasia, clinicians and researchers to address this gap. It comprises sociodemographic characteristics, quality indicators, treatment descriptors and outcome measurement instruments. We present a protocol to pilot the MEASuRES minimum dataset in clinical practice, describe the factors that hinder or support implementation and determine meaningful thresholds of clinical change for core outcome measurement instruments. METHODS AND ANALYSIS: This research aims to deliver a comprehensive quality assessment toolkit for poststroke aphasia services in four studies. A multicentre pilot study (study 1) will test the administration of the MEASuRES minimum dataset within five Australian health services. An embedded mixed-methods process evaluation (study 2) will evaluate the performance of the minimum dataset and explore its clinical applicability. A consensus study (study 3) will establish consumer-informed thresholds of meaningful change on core aphasia outcome constructs, which will then be used to establish minimal important change values for corresponding core outcome measurement instruments (study 4). ETHICS AND DISSEMINATION: Studies 1 and 2 have been registered with the Australian and New Zealand Clinical Trial Registry (ACTRN12623001313628). Ethics approval has been obtained from the Royal Brisbane and Women's Hospital (HREC/2023/MNHB/95293) and The University of Queensland (2022/HE001946 and 2023/HE001175). Study findings will be disseminated through peer-reviewed publications, conference presentations and engagement with relevant stakeholders including healthcare providers, policy-makers, stroke and rehabilitation audit and clinical quality registry custodians, consumer support organisations, and individuals with aphasia and their families.

Intersectionality and Its Relevance in the Context of Aboriginal People with Brain Injury in Australia.

In this article, we explore the benefits of recognizing the impact of intersectionality on access to, and provision of, brain injury care in a First Nations context. While disadvantage and discrimination are often associated with the intersection of culture, gender, disability, and socioeconomic disadvantage, it is only when these factors are explored together that clinicians can really understand what people need to recover and thrive following acquired brain injury. In this article, we challenge speech-language pathologists to examine their own practices, to look beyond Western models of health and constraints of many current institutional models of care and ways of framing research, to acknowledge historical and ongoing colonizing influences, and to engage with community-led solutions. We provide a model of Aboriginal-led care, where intersection of discrimination and marginalization is minimized and the multiple components of the individual, carers/communication partners, and the environment become empowering factors instead.

Enhancing effective healthcare communication in Australia and Aotearoa New Zealand: Considerations for research, teaching, policy, and practice.

Objective: In this article we present a conceptual framework for enhancing effective healthcare communication in Australia and Aotearoa New Zealand. Methods: Through an iterative, deliberative dialogue approach, we, as experts from a variety of health professions and academic disciplines, worked together to identify core values and considerations for healthcare communication across numerous health professions and disciplines and within research, teaching, policy, and practice contexts. Results: The framework developed includes five core values at its centre: equitable, inclusive, evidence-based, collaborative, reflective. Around this are concentric circles showing key elements of collaborators, modality, context, and purpose. Each of these is explored. Conclusion: This work may support benchmarking for healthcare providers, researchers, policymakers, and educators across a breadth of professions to help improve communication in clinical practice. The framework will also help to identify areas across disciplines that are shared and potentially idiosyncratic for various professions to promote interprofessional recognition, education, and collaboration. Innovation: This framework is designed to start conversations, to form the foundation of a dialogue about the priorities and key considerations for developing teaching curricula, professional development, and research programs related to healthcare communication, providing a set of values specifically for the unique contexts of Australia and Aotearoa New Zealand. It can also be used to guide interdisciplinary healthcare professionals in advancing research, teaching, policy, and practice related to healthcare communication.

Seeing Voices: A Dynamic, Interprofessional Approach to Teaching Performing Arts and Speech-Language Pathology Students About Vocal Anatomy and Physiology.

OBJECTIVES: Seeing Voices was an interprofessional, technology-enabled, large-scale, teaching and learning event developed to address the need to improve voice students' knowledge of laryngeal anatomy and physiology toward understanding and maintaining vocal health. Seeing Voices trialed a novel interprofessional educational approach, collected both quantitative and qualitative data about student experiences of laryngostroboscopic examination, and built a databank of laryngeal recordings for future student learning. METHODS: Seeing Voices involved two 3-hour seminars in a large, university lecture space, run by an interprofessional team (speech-language pathologists, vocal coach, Ear Nose and Throat consultant) with quality equipment projecting laryngeal images to large screens with expert commentary in real time. Participants were 18 students who volunteered for laryngeal examination (9 per seminar) and student attendees (n = 175) from performing arts courses (classical singing, contemporary, jazz, musical theater, acting) and a speech-language pathology course. A quantitative evaluation of knowledge gained was undertaken using a Qualtrics survey. Results from pre (n = 175; performing arts = 120; speech-language pathology (SLP) = 55) and postevent (n = 99; performing arts = 56; SLP = 43) questionnaires were received from the students who attended. Interviews were collected from 15 of the 18 student volunteers about their experiences of nasendoscopic evaluation and data were analyzed using qualitative description and qualitative content analysis. RESULTS: Quantitative results demonstrated a strong trend toward increased knowledge following attendance at the event across year cohorts for both student groups. Qualitative interviews highlighted the value in seeing multiple examples of normal laryngeal functioning across different vocal techniques in real time. For those undertaking nasendoscopic examination, simultaneously seeing and feeling laryngeal maneuvers used in training appeared to promote understanding of their own vocal mechanism and the purpose of different vocal techniques. CONCLUSIONS: Seeing Voices offers a novel way to improve interprofessional collaboration, and engagement with, and understanding of, laryngeal anatomy and vocal health by students in performing arts and speech-language pathology courses.

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

BACKGROUND: Group singing for people with Parkinson's 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.

Knowledge mediates attitude in autism spectrum disorders? Data from Malaysia.

Limited efforts have been made in middle- and low-income countries to raise public awareness of autism spectrum disorders (ASD) over the past ten years. We report data from a general population survey exploring the relationship between awareness, knowledge, and attitudes regarding autism in Malaysia. A questionnaire consisting of items related to awareness, knowledge, and attitudes regarding ASD was distributed. The scores of knowledge of ASD and attitude towards ASD were 6.87 (SD = 4.17; with a total possible score of 12) and 6.39 (SD = 2.77; with a total possible score of 9), respectively, indicating that, on average, the participants had moderate levels of knowledge and attitude. Structural equation modeling showed that improving awareness and knowledge about ASD will enhance more positive attitudes towards ASD. Efforts should be geared towards disseminating information about ASD, in order to increase acceptance of the disorder.

"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.

"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.

"Sometimes I Feel Grateful ": Experiences of the Adolescent Siblings of Children with Autism Spectrum Disorder in Malaysia.

Sibling relationships remain understudied in typically developing adolescents who have siblings with autism spectrum disorder (ASD). This study explored the lived experiences and perceptions of adolescents who have a brother or a sister with a diagnosis of ASD using semi-structured interviews. Using thematic analysis, the participants reported having difficulties communicating with their siblings. Feeling a mixture of emotions was common when interacting with their siblings with ASD and emotional self-regulation was a typical coping strategy utilized by these adolescents. Despite the challenges, having a sibling with ASD led to closer relationships between the siblings. These findings offer insights into these adolescents' needs and how they may be best supported, informing the practice of speech-language pathology and other health professions.

The facilitators and barriers to exercise in the Noongar Aboriginal population in Perth, Australia.

Indigenous Standpoint Theory forms the epistemological foundation for this study and methodological choices were made within this theoretical framework to ensure culturally responsive research processes that engaged the Indigenous agenda of self-determination and rights. The objectives of this research were to determine: (i) Indigenous perceptions of the facilitators and barriers to exercise; (ii) The potential feasibility and sustainability of an exercise intervention. In this context, Participatory Action Research methods were used to design the data-gathering instrument for the study-a questionnaire, co-designed with the Noongar Aboriginal community of Perth, Western Australia. This self-administered questionnaire, distributed to participants by email, post and manual delivery, sought to elicit the factors that impact uptake and retention of regular exercise activities. Questionnaire data included individual demographic detail and specific question responses on labelled 5 point Likert Scales. Specific question responses were tabulated by Likert Scale label category and the response distribution for each question was enumerated. Simple descriptive statistics (measures of central tendency and variance) were used to characterize the data set and the Chi squared test was used to evaluate frequency differences between males and females. A total of 133 participants (71 females) completed the questionnaire. The results indicated that people valued exercise. The most common barriers indicated by participants were exercising with an injury (63%), changing diet (58%), finding time to exercise every day (55%) and exercising the next day with pain from exercising the day before (54%). A larger proportion of males (34%) than females (24%) reported greater ease in finding time to exercise every day (p < 0.05). Facilitators mainly related to the potential social and community benefits of exercising with other people, preferably in small groups, and the importance of a culturally secure venue. These findings shed light on what a culturally secure exercise programme might involve for the Noongar community. As this may have implications for other Aboriginal and Torres Strait Islander and international First Nations' Peoples, more focused research is needed on the place of traditional physical activities and the nature of culturally secure exercise programmes and spaces to enable wider application.

Communication services for First Nations peoples after stroke and traumatic brain injury: Alignment of Sustainable Development Goals 3, 16 and 17.

PURPOSE: Colonisation and continuing discrimination have significantly and negatively impacted the physical, social and emotional wellbeing of First Nations peoples globally. In Australia, Aboriginal cultures thrive despite ongoing barriers to health care. This paper describes challenges and new initiatives for Australian Aboriginal people with acquired communication disability after brain injury and their alignment with the global aims forming the Sustainable Development Goals. RESULT: Research undertaken by an Aboriginal and non-Aboriginal multidisciplinary team over a decade in Western Australia identified and responded to mismatches between community needs and services. Initiatives described include the Missing Voices, Healing Right Way, Brain Injury Yarning Circles and Wangi/Yarning Together projects. Recommendations implemented related to (a) greater incorporation of Aboriginal cultural protocols and values within services, (b) more culturally secure assessment and treatment tools, (c) support after hospital discharge, (d) Aboriginal health worker involvement in support. Implementation includes cultural training of hospital staff, trialling new assessment and treatment methods, and establishing community-based Aboriginal Brain Injury Coordinator positions and relevant peer support groups. CONCLUSION: Culturally secure brain injury rehabilitation in Australia is in its infancy. Our initiatives challenge assumptions about worldviews and established Western biomedical models of healthcare through incorporating Indigenous methodologies and leadership, and community-driven service delivery. This commentary paper focuses on Sustainable Development Goals 3, 16 and 17.

The relationship between affiliate stigma, stress, and quality of life for parents of individuals with cerebral palsy in Malaysia.

OBJECTIVE: To examine the relationship between affiliate stigma, stress, and perceived quality of life among parents of children with cerebral palsy (CP). METHOD: Surveys (Study 1) and semi-structured interviews (Study 2) were used to collect data. Thirty-eight respondents completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI), and Care-related Quality of Life (CarerQol) scales (GMFCS). Eleven respondents took part in semi-structured interviews, which were then thematically evaluated. RESULTS: Parents did not feel stigmatized because they had a child with CP. However, parents needed some form of short-term relief from caregiving. After controlling for demographics, high stress respondents experienced high affiliate stigma whereas low stress respondents had better quality of life. Although the respondents with less stigma had a better quality of life, this effect was moderate. Three major themes emerged from the interviews. CONCLUSION: Counseling, support groups, and helper services should be offered to parents. Also, healthcare professionals participating in CP rehabilitation, community-based rehabilitation, and health institutions should be educated on how to better help parents of children with CP.

There is a need in Malaysia to offer counseling, support groups, and assistance programs for parents of children with cerebral palsy.Healthcare professionals, who offer rehabilitation services to children with cerebral palsy, need greater awareness of the needs of families and caregivers and should be educated about how to best support them.There should be greater recognition of the importance of respite and relief from caregiving among Malaysian parents of children with cerebral palsy.

"I won't be able to speak for three days after": Ethical and practical considerations in qualitative research involving people with a laryngectomy.

Purpose: A laryngectomy impacts communication, swallowing and breathing. It is disfiguring and can disrupt quality of life, one's sense of identity, and relationships. It can increase dependence on others, trigger social stigma, avoidant coping and suicidal risk. Qualitative research has the potential to enable greater understanding of these consequences. However, almost nothing has been written about the specific ethical issues that can arise when carrying out research with people with laryngectomy (PWL). This paper builds on the experiences of the authors in the field and seeks to examine and explain these research ethics considerations and how they impact research design, data collection, data analysis and dissemination.Method: Using a framework based on the values underpinning the Australian National Statement on Ethical Conduct in Human Research, respect, merit and integrity, justice and beneficence, we have highlighted key issues relevant to this particular population.Main contribution: Different practical approaches are provided to address the ethical concerns that arise when conducting research with PWL. These include access to participants and ensuring diverse representation; balancing harm and benefit; achieving accurate interpretation, analysis and representation of the data generated through the research; research as a partnership that is respectful, empowering and fosters collaboration.Conclusion: This paper breaks new ground in discussing the ethical considerations and practical challenges relevant to researching the experiences of PWL.

Statistical analysis plan for the stepped wedge clinical trial Healing Right Way-enhancing rehabilitation services for Aboriginal Australians after brain injury.

BACKGROUND: Aboriginal Australians are known to suffer high levels of acquired brain injury (stroke and traumatic brain injury) yet experience significant barriers in accessing rehabilitation services. The aim of the Healing Right Way trial is to evaluate a culturally secure intervention for Aboriginal people with newly acquired brain injury to improve their rehabilitation experience and quality of life. Following publication of the trial protocol, this paper outlines the statistical analysis plan prior to locking the database.  METHODS: The trial involves a stepped wedge design with four steps over 3 years. Participants were 108 adult Aboriginal Australians admitted to one of eight hospitals (four rural, four urban) in Western Australia within 6 weeks of onset of a new stroke or traumatic brain injury who consented to follow-up for 26 weeks. All hospital sites started in a control phase, with the intervention assigned to pairs of sites (one metropolitan, one rural) every 26 weeks until all sites received the intervention. The two-component intervention involves training in culturally safe care for hospital sites and enhanced support provided to participants by Aboriginal Brain Injury Coordinators during their hospital stay and after discharge. The primary outcome is quality of life as measured by the Euro QOL-5D-3L VAS. A mixed effects linear regression model will be used to assess the between-group difference at 26 weeks post-injury. The model will control for injury type and severity, age at recruitment and time since commencement of the trial, as fixed effects. Recruitment site and participant will be included as random effects. Secondary outcomes include measurements of function, independence, anxiety and depression, carer strain, allied health occasions of service received and hospital compliance with minimum processes of care based on clinical guidelines and best practice models of care. DISCUSSION: The trial will provide the first data surrounding the effectiveness of an intervention package for Aboriginal people with brain injury and inform future planning of rehabilitation services for this population. The statistical analysis plan outlines the analyses to be undertaken. TRIAL REGISTRATION: Australia New Zealand Clinical Trials Registry ACTRN12618000139279. Registered 30 January, 2018.