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The complexities of designing therapy for Māori living with stroke-related communication disorders
Abstract
Stroke-related communication disorders can have a substantial impact on Māori whānau (extended family). Timely and appropriate speech-language therapy is required, but there are many challenges in providing this. In this article we discuss the need for a kaupapa Māori approach to speech-language therapy that is designed by Māori for Māori, and undertaken in a Māori way. We report the results of a literature review that revealed a small but significant body of literature describing Māori experiences of stroke, aphasia and speech-language therapy, and evidence that a Māori-specific therapy programme can improve outcomes for people with stroke. We then consider the social and political context that impacts the design and delivery of such an approach. Informed by the literature, we propose a hierarchy of skill and resource acquisition for speech-language therapists, in which they learn why to be culturally safe, how to be culturally safe, and how to interact before creating resources to build relationships, resources for education and for therapy. The creation of a kaupapa Māori speech-language therapy approach should bring together people with stroke, whānau members and service providers to create therapy that crosses sectors and disciplines and acknowledges the wider social and political context.
... Some of these articles provide recommendations on decolonization, cultural safety, cultural responsiveness, countering the pathologization of Indigenous languages/Indigenous variations of English, and/or language policy in the context of the colonialism faced by Indigenous and/or Black people in Australia, Canada, Aotearoa/New Zealand, South Africa, and the U.S.A (Allison-Burbank, 2016;Brewer, 2017;Gillipsie, 2016;Gould, 2008;McLellan et al, 2014;Peltier, 2008;Pesco, 2014;Purdy, 2020;Zingelman et al. 2020). Several articles specifically discuss recommendations for clinical services for Indigenous people with acquired brain injury, including as a result of stroke (Penn et al., 2017;Armstrong et al., 2019;Brewer et al., 2016;Brewer et al., 2020;Penn & Armstrong, 2017), in the context of ongoing consequences of colonialism that inform health outcome disparities (Brewer et al., 2020). Other articles provide recommendations when addressing colonialism. ...
... Four articles assert the importance of incorporating (pan-) Indigenous perspectives, frameworks, research, and epistemologies (Brewer et al., 2016;Brewer 2017;Purdy, 2020;Zingelman et al., 2020) to facilitate SLPs' effective engagement with culturally responsive practices. Furthermore, studies highlight the importance of implementing Indigenist methodologies while collaborating with Indigenous peoples with the aim that the research will be decolonizing, transformative, and beneficial for Indigenous peoples (Brewer et al., 2016). ...
... Four articles assert the importance of incorporating (pan-) Indigenous perspectives, frameworks, research, and epistemologies (Brewer et al., 2016;Brewer 2017;Purdy, 2020;Zingelman et al., 2020) to facilitate SLPs' effective engagement with culturally responsive practices. Furthermore, studies highlight the importance of implementing Indigenist methodologies while collaborating with Indigenous peoples with the aim that the research will be decolonizing, transformative, and beneficial for Indigenous peoples (Brewer et al., 2016). ...
... Cultural safety focuses on the culture of the clinician and the inherent power dynamics, emphasizing the need for clinicians to recognize and address these power differences to provide culturally safe care. This approach requires a critical analysis of how Māori are perceived and treated, including knowledge of health inequities and social determinants of health [23]. ...
Purpose of Review
Stroke incidence and outcomes are disproportionately unfavorable among Indigenous populations in Western colonized countries. These inequities are often attributed to poor health literacy. This paper summarizes recent evidence on the topic of Indigenous health literacy, describes current gaps, and proposes priorities for future work/research.
Recent Findings
Traditionally, much focus has been placed on improving health literacy for Indigenous Peoples as a key intervention to address Indigenous stroke and other health disparities. Recent literature, however, challenges this approach as it risks stigmatization and marginalization and portrays the deficiencies as sitting with Indigenous people. Increasingly, an emphasis is placed on the need for health literacy approaches to be culturally responsive for the populations of interest, for institutions to provide high quality culturally relevant stroke care, and for providers to upskill in cultural safety to better meet the needs of Indigenous patient populations. Very little evidence exists to indicate that stroke care providers are meeting these needs.
Summary
To close the health gap and improve stroke care for Indigenous Peoples, the focus needs to shift from promoting health literacy among Indigenous Peoples to providing high quality culturally relevant health care. More research into this topic and monitoring of progress over time is needed.
... Kaupapa Māori theory utilises Māori methods of knowing, being and doing, aims for positive, transformative change and supports aspirational thinking. [16][17][18] Kaupapa Māori research aims to give power back to Māori in the research process, 16 has been used in other Māori health services research, [19][20][21][22][23] and is best practice when undertaking research centring on Māori. 24 Further articulation of the application of kaupapa Māori practices in this research have been published previously. ...
Background
Medicines are the most common medical intervention and medicines adherence is associated with improved clinical outcomes. Understanding drivers and experiences of medicines adherence is important for optimising medicines use. Māori (Indigenous people of Aotearoa New Zealand) experience inequities in access to medicines yet little evidence exists regarding Māori and medicines adherence, or the role of pharmacists in supporting medicines adherence for Māori.
Objectives
To explore Māori experiences of medicines adherence and non-adherence, and pharmacists' role in supporting adherence.
Methods
This was a convergent parallel mixed methods study. Facilitated wānanga (collaborative knowledge-sharing group discussions) were undertaken either online or in-person with eligible participants, using convenience and snowball sampling to recruit. Participants were eligible if they were Māori, 18 years or older, and had recently obtained medicine from a pharmacy. Wānanga involved semi-structured interviewing and questionnaire completion. General inductive coding and thematic analysis and descriptive statistical analysis were used respectively, and findings were situated in social, cultural and political Māori contexts.
Results
Thirteen wānanga were conducted with 62 participants (71% female, median age range 35–44) from September 2021 to February 2022. Four themes were identified: The aspirations of hauora Māori (Māori wellbeing) - medicines as a component of holistic wellbeing; whanaungatanga (relationships); knowledge; and whānau (family and support network) advocacy and problem solving. Forgetting to take medicines was the most frequently identified reason for non-adherence, followed by not having medicines on hand, adverse effects, and lack of symptoms of health conditions. Participants identified that proactive pharmacist support, including developing caring therapeutic relationships, sharing knowledge, acknowledging medicines as just one component of holistic wellbeing, and giving adherence tips to support routine medicine taking were positive ways that pharmacists could support medicines adherence.
Conclusions
Factors contributing to medicines adherence were diverse and participants identified numerous practical solutions that pharmacists, health service providers and policymakers could employ to support Māori medicines adherence.
Purpose:
To investigate the characteristics of studies that included underrepresented speech-language pathologists (SLPs) as research participants.
Method:
A scoping review was conducted using the principles of the transformative research paradigm, which promotes the meaningful involvement and empowerment of marginalised groups. Co-production with minority SLPs was facilitated. The search strategy was run in six databases, and the transformative checklist used for analysis.
Result:
Twenty studies were included. Bilingual and male SLPs were among the most commonly included underrepresented SLPs. Most studies were conducted in the USA (n = 16), and used survey methods. The studies provided valuable insights into the experiences and practices of underrepresented SLPs, and yielded practical solutions to foster inclusion and diversity in the profession. Most studies demonstrated a transformative potential, but the active engagement of underrepresented SLP participants in the research cycle was rarely demonstrated.
Conclusion:
This review calls for a shift in how and why research is conducted when including underrepresented SLP participants. Through the lens of the transformative research paradigm, we can rethink the broader aim of research and the role of researchers and participants. Using research as a platform to give visibility, voice, and agency to minority groups can stimulate change and equity in the profession.
Anti-Indigenous racism is a widespread social problem in health and education systems in English-speaking colonized countries. Cultural safety training (CST) is often promoted as a key strategy to address this problem, yet little evidence exists on how CST is operationalized and evaluated in health and education systems. This scoping review sought to broadly synthesize the academic literature on how CST programs are developed, implemented, and evaluated in the applied health, social work and education fields in Canada, United States, Australia, and New Zealand. MEDLINE, EMBASE, CINAHL, ERIC, and ASSIA were searched for articles published between 1996 and 2020. The Joanna Briggs Institute's three-step search strategy and PRISMA extension for scoping reviews were adopted, with 134 articles included. CST programs have grown significantly in the health, social work, and education fields in the last three decades, and they vary significantly in their objectives, modalities, timelines, and how they are evaluated. The involvement of Indigenous peoples in CST programs is common, but their roles are rarely specified. Indigenous groups must be intentionally and meaningfully engaged throughout the entire duration of research and practice. Cultural safety and various related concepts should be careful considered and applied for the relevant context.
Background
Anti-Indigenous racism is a widespread social problem in health, social work, and education systems in English-speaking Colonized countries such as Canada, with profound negative impacts to the health and education of Indigenous peoples. In 2015, Canada’s Truth and Reconciliation Commission recognized the legacy and impact of Colonization and recommended training programs for these professions on cultural competency and curricula, and on the colonial history of Canada. Yet there is little evidence on best practices for such training, highlighting the need to synthesize existing findings on how these training programs are developed, implemented, and evaluated.
Methods
This scoping review explored the academic literature on Indigenous cultural safety and competence training in the health, social work, and education fields. Medline, EMBASE, CINAHL, ERIC and ASSIA were searched for articles published between 1996-2020 in Canada, United States, Australia, and New Zealand. The Joanna Briggs Institute’s three-step search strategy was used as was the PRISMA extension for Scoping Reviews. Data was charted and synthesized in three stages.
Results
134 were included in this review. Data was extracted on four themes: 1) Article Characteristic; 2) Cultural Safety Concepts, Critiques and Rationale; 3) Characteristics of Cultural Safety Training; and 4) Evaluation Details of Cultural Safety Training. Findings suggest that research on cultural safety training programs in health, social work and education has grown significantly. Nursing and medicine professions have received a significant proportion of cultural training programs, compared with general/allied health, social work, and education. Across fields, professionals and students were targeted equally by training programs. Only half of evaluations of cultural safety and related intervention identified methodological limitations.
Implications
Considering, comparing, and contrasting literature on cultural safety and related concepts and how they are applied in practice would advance this scholarly work, as would more robust evaluations of cultural safety and similar training interventions to understand their impact at the individual level. Finally, commitment to meaningfully engage Indigenous communities to develop, implement and evaluate such programs is urgently needed.
The aim of this scoping review was to document all Māori speech-language therapy research undertaken in New Zealand in the past 20 years and identify gaps in the literature, to establish an evidence base for speech-language therapy services for Māori. Eligible literature included all original research published in peer-reviewed journals, and all honours, Masters and PhD theses. Electronic databases Scopus, PubMed, ProQuest and Medline were searched in February 2020. We also hand-searched thesis repositories and The New Zealand Journal of Speech Language Therapy. The initial search resulted in 338 publications. After duplicates were removed, the remaining 153 publications underwent screening of title and abstract and a further 124 publications were excluded. Thirty-one publications were screened at full text level, with 11 excluded, leaving a total of 20 (11 articles, 9 theses) which were included in the review. A repeat search revealed one further publication, bringing the total to 21 (12 articles, 9 theses) included in the review.
Most of the research was produced in the past 10 years. Over half of the theses had a te reo Māori (Māori language) focus, in comparison to only one article. Seven of the 9 theses employed kaupapa Māori research methodologies, whereas only 3 of the 11 articles did so. With such a small number of articles and theses across the entire field of speech-language therapy, there is no aspect of speech-language therapy for Māori that is researched to a level sufficient to inform evidence-based practice.
Background: This paper presents the pilot testing of an online professional development (PD) course for New Zealand (NZ) speech-language therapists (SLTs) working with Māori with stroke-related communication disorders (predominantly aphasia). Taking a public health approach and focusing on the context of Māori as Indigenous peoples in a colonised society, the course lays the foundation for aphasia management for Māori. It consists of two modules. Module One addresses health inequities, social determinants of health, racism, the Treaty of Waitangi, cultural safety and power inherent in the role of the SLT. Module Two includes specific information about providing therapy for Māori stroke patients (particularly those with aphasia) and family members and working with Māori health colleagues.
Aim: The primary aim was to ascertain the impact of the course on participants’ clinical practice with Māori with aphasia. A secondary aim was to examine participants’ assessment of the content and delivery of the course.
Methods & Procedures: This was a qualitative longitudinal pilot study. Eleven SLTs completed the online course, immediately followed by a survey in which they gave feedback on the course and named three activities they would do to apply their learning in the following six months. Eight participants were available for interview six months later. Interviews aimed to ascertain what participants learned from the course, how they applied their learning and how the course could be improved. Interview data were analysed using a “general inductive approach”, in conjunction with responses to the survey.
Outcomes & Results: Interview findings were divided into two main themes – “putting it into practice” which revealed what participants learned and how they applied their learning and “keeping it at the forefront” which focused on maintaining that learning and practice, including reflection on the course content and delivery. All participants were positive about the course and all would recommend it to colleagues.
Conclusions: The pilot testing revealed that participants made positive changes to their practice as a result of their learning. Challenges inherent in completing the course and applying learning and suggestions for improvement were also identified. Although the course content is NZ-specific, many of the ideas in the course are relevant to numerous multiethnic contexts across the world in which the speech-language therapy culture in service delivery could be impacted by issues such as power, racism, and inequity.
Purpose: Aboriginal Australians are under-represented in stroke rehabilitation services and rehabilitation practices that are sensitive to the needs of Aboriginal people are not currently available. This project tested the feasibility and acceptability of a rehabilitation model and approach to therapy with Aboriginal people with acquired communication disorders post-stroke.
Method: Eight Aboriginal people with acquired communication disorders post-stroke were recruited to this study. Sixteen treatment sessions were provided twice weekly at the person’s place of residence by a speech-language pathologist and Aboriginal co-worker. Feasibility was measured by analysing the number of sessions conducted jointly by the speech-language pathologist and Aboriginal co-worker and participant attendance. Participant acceptability was measured through the analysis of a post-therapy questionnaire. The Aboriginal co-worker’s and speech-language pathologists’ perceptions of the acceptability were collected through semi structured interviews.
Result: Across all sessions 84.2% were attended by the Aboriginal co-worker and speech-language pathologist and seven of the eight participants completed all prescribed sessions. Positive feedback was provided by participants, the Aboriginal co-worker and speech-language pathologist on the key components of the programme.
Conclusion: The rehabilitation model used within Wangi appears to be feasible and acceptable to participants and therapists. It provides direction to improve the quality of care for Aboriginal stroke survivors.
More than 50 years of research has demonstrated the profound effect that aphasia has on people with the condition and their family members. In the International Classification of Functioning, Disability and Health, the World Health Organization described the impact of an individual's health condition on a significant other as "third-party disability." Recent research has described how third-party disability can occur in family members of people with aphasia post-stroke. Despite the extensive history and ongoing relevance of these findings, family-centered rehabilitation has been slow to integrate into clinical practice and policy. The aims of this article are (1) to provide an overview of third-party disability in family members of people with aphasia; (2) to consider how third-party disability can be addressed through family-centered care and to identify some of the barriers to family-centered care; and (3) to describe The Family Aphasia Measure of Life Impact (FAMLI), a tool for measuring third-party functioning and disability in family members of people with aphasia, identifying family rehabilitation needs, and measuring outcomes of family-centered care.
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