Factors influencing speech pathology practice in dysphagia after stroke: A qualitative focus group study.

BACKGROUND: Dysphagia affects over half of adults after stroke. Dysphagia rehabilitation aims to improve swallowing and reduce negative outcomes for these adults. However, significant variability exists in dysphagia rehabilitation. Research is needed to explore the underlying clinician-specific and workplace factors that contribute to variability in dysphagia rehabilitation after stroke. AIM: To explore factors influencing speech pathology practice in dysphagia rehabilitation after stroke. METHODS & PROCEDURES: We used a phenomenological approach with an interpretivist perspective. Twenty speech pathologists working in dysphagia rehabilitation participated from different workplace settings around Australia. Five semi-structured focus groups were conducted online. Data were inductively analysed using thematic analysis with a coding reliability method. OUTCOMES & RESULTS: Four themes were discussed within focus groups: (1) relationship between experienced and less experienced clinicians: 'Following what other people have done', (2) need for collaborative learning: 'A safe space to share and train', (3) variation between settings impacts on continuity of care: 'There's a difference between community and acute', and (4) working effectively with multidisciplinary teams (MDT): 'An MDT which can listen to the voice of speech pathology'. CONCLUSIONS & IMPLICATIONS: Relationships between senior and junior speech pathologists, within speech pathology and MDT, and across inpatient and community settings influenced speech pathology practice. Flattened hierarchies in speech pathology, collaborative learning in workplaces, mutual respect within teams and connection across inpatient and community settings could improve the quality and consistency of dysphagia rehabilitation after stroke. WHAT THIS PAPER ADDS: What is already known on this subject Dysphagia rehabilitation can improve swallowing after a stroke. However, dysphagia rehabilitation is characterised by variability in clinical practice. Clinician-specific and workplace factors influence clinical practice and may contribute to variability in dysphagia rehabilitation. What this study adds Professional relationships influence speech pathologists' clinical practice, including relationships between senior and junior clinicians, between inpatient and community settings and with peers and multidisciplinary teams. Workplace norms and hierarchies, poor continuity of care between settings and competing priorities from other disciplines can hinder dysphagia rehabilitation. However, collaborative learning, positive workplace cultures and respectful transdisciplinary care can improve the quality and consistency of clinical practice. What are the clinical implications of this work? Flattening hierarchies in the workplace can foster a safe learning space. Further, questioning workplace norms and seeking out peer learning within and across settings can build clinical skills and confidence. Developing positive workplace cultures that support continuous development may be key for empowering speech pathologists to provide high-quality and consistent dysphagia rehabilitation.

"One of the biggest grey areas": A focus group study exploring dosage of swallowing exercises from speech-language pathologist perspectives.

Purpose: To explore the perspectives and practices of speech-language pathologists on dosage of swallowing exercises in stroke rehabilitation.Method: Online focus groups involved 20 speech-language pathologists working in various settings across Australia. Focus group data were recorded, deidentified, and analysed using inductive thematic analysis guided by an interpretivist phenomenological approach.Result: Analysis resulted in four main themes: (1) "Getting the most bang for your buck": Importance of dosage in swallowing, (2) "No patient is identical": Personalising swallowing exercise dosage to the patient, (3) "You've got what you should do, and then what you can do": Gap between recommendations and practical application, and (4) "Not much guidance out there about dosage": More research needed to guide dosage. Speech-language pathologists agreed that dosage was theoretically important for swallowing exercises, but practical application of dosage was impacted by patient factors, limited access to resources, and lack of research-based guidelines.Conclusion: Speech-language pathologists reported trying to provide optimal care despite multiple barriers to prescribing dosages of swallowing exercises in practice. Personalising exercise dosage to the patient, creative clinician strategies, improved and equitable access to resources, and research-based guidelines on swallowing exercise dosages are needed to address these barriers.

A call to action for disability and rehabilitation research using a DisCrit and Disability Justice framework.

PURPOSE: Disability and ableism exist within a societal context that does not ignore the many facets of a person's identity, however often our disability research does not recognize how experiences vary based on the intersecting identities individuals hold. This article utilizes Intersectionality, Dis/ability Critical Race Studies (DisCrit), and Disability Justice to identify ways for rehabilitation researchers to adapt their research practices for maximum inclusivity and representation. MATERIALS AND METHODS: Using these three frameworks, we have developed a call to action including recommendations for rehabilitation researchers to consider as they design and implement research projects. RESULTS: Incorporating these frameworks provides an opportunity to reimagine current research practices. CONCLUSIONS: An accessible approach can help researchers better understand and report on the nuances of intersecting identities on the lives of disabled people.Implications For RehabilitationDisability identity and ableism must be viewed intersectionally, and disability related research must attend to the many facets of a person's identity.Intersectionality, DisCrit, and Disability Justice provide useful frameworks through which we can conduct more inclusive and accessible disability research.We present a call-to-action including seven general considerations that researchers can implement to guide the development of intersectional and inclusive disability research.

"Teaching somebody else makes you a better person:" A phenomenological exploration of the importance of informal peer support for individuals with spinal cord injury.

BACKGROUND: Peer support is widely recognized as an important aspect of health promotion for individuals with spinal cord injury (SCI). Reports indicate positive effects for the recipients of either informal and formal peer support. The experience can also be meaningful to the person(s) providing support, although the value to providers is not well studied. OBJECTIVE: This study examines the experience of provision of and receipt of informal peer support for individuals with SCI through semi-structured interviews. METHODS: Data were analysed using a qualitative phenomenological approach. 16 participants with SCI participated in the study. RESULTS: Three main themes were developed, each describing different benefits of peer support from the perspective of both members of the peer support dyad. First, participants found personal satisfaction from using their own experiences to help others adjust to their disability. Participants also noted that they learned how to complete activities of daily living as well as how to be autonomous in travel from others with SCI. Finally, participants spoke of the intrinsic benefit in teaching others with SCI. CONCLUSIONS: This study provides a novel understanding of the importance of informal peer support for individuals with SCI. Practitioners should provide opportunities for individuals with SCI to develop informal peer relationships with others who have sustained SCI.

Rethinking device abandonment: a capability approach focused model.

It is estimated that approximately 97 million people in the world have complex communication needs and may benefit from alternative and augmentative communication (AAC). Although AAC is considered an evidenced-based intervention, device abandonment remains common, and researchers have attempted to analyze the causes of people abandoning devices. These devices have been prescribed following extensive assessment and often a protracted period of negotiation with a funding body. In this paper, we present the process of AAC prescription using a new model called the Communication Capability Approach by adding the Capability Approach from Amartya Sen to the widely used Participation Model. This allows clinicians to see individual daily decision-making as a valid choice of the individual. We propose reframing the concept of device abandonment as the person and their family making a choice to use a full range of multimodal communication to meet their own needs. This changes the tone of the narrative to viewing the person using AAC as competent and able to exercise self-determination and agency in this decision rather than as abandoning the device. AAC choices can be made on a day-to-day basis, according to the context of use so that people do not abandon devices but rather use whichever mode of communication is appropriate to the context.

Dance for Chronic Pain Conditions: A Systematic Review.

OBJECTIVES: Globally, 20-25% of people will experience chronic pain in their lifetimes. Dance is a physical activity with psychosocial benefits that might positively impact pain. This review aimed to investigate the effect of dance interventions on the experience of pain by quantitative measures and qualitative themes. METHODS: Seven major databases were searched from inception to January 2021. Two independent reviewers screened articles at each stage. Qualitative and quantitative studies were included if the dance interventions lasted more than 6 weeks, participants reported pain of duration longer than 3 months, and pain was an outcome of the study. All articles were critically appraised with appropriate Joanna Briggs Institute tools, and data were collated through the use of results-based convergent synthesis. RESULTS: From 23,628 articles, 34 full papers were included, with a total of 1,254 participants (75.2% female). Studies predominantly investigated individuals with fibromyalgia (26%) and generalized chronic pain (14%), with aerobic dance (20.7%) and Biodanza (20.7%) being the most common dance genres investigated. Overall, 74% of studies noted either reduced pain through quantitative pain measures or qualitative themes of improved pain experience (88% for chronic primary pain and 80% for chronic secondary musculoskeletal pain). DISCUSSION: There were positive effects of dance on chronic primary and secondary musculoskeletal pain across diverse populations. A variety of study designs and interventions noted improved pain measures and themes around pain coping and acceptance, with all dance therapies showing improvements, particularly when performed for 60-150 minutes' duration weekly. Dance should be considered as an effective adjunct in the management of chronic pain.

"It Helps Me With Everything": A Qualitative Study of the Importance of Exercise for Individuals With Spinal Cord Injury.

Background: The influence of exercise after spinal cord injury (SCI) is a topic important to both clinicians and researchers. The impact of exercise for individuals with SCI is often studied quantitively, with a large focus on the physiological adaptations to exercise intervention. Objectives: This study explores individualized experiences of exercise for people with SCI. Methods: A phenomenological approach was utilized to qualitatively study the experiences of exercise for 16 individuals with SCI. Results: Participants described multiple benefits of exercise, including increased independence, improved mental health, and increased engagement in social activity. Conclusion: This study provides novel information about attitudes toward exercise held by individuals with SCI and a more thorough understanding of concepts that are well researched.

Electromyography-Driven Exergaming in Wheelchairs on a Mobile Platform: Bench and Pilot Testing of the WOW-Mobile Fitness System.

BACKGROUND: Implementing exercises in the form of video games, otherwise known as exergaming, has gained recent attention as a way to combat health issues resulting from sedentary lifestyles. However, these exergaming apps have not been developed for exercises that can be performed in wheelchairs, and they tend to rely on whole-body movements. OBJECTIVE: This study aims to develop a mobile phone app that implements electromyography (EMG)-driven exergaming, to test the feasibility of using this app to enable people in wheelchairs to perform exergames independently and flexibly in their own home, and to assess the perceived usefulness and usability of this mobile health system. METHODS: We developed an Android mobile phone app (Workout on Wheels, WOW-Mobile) that senses upper limb muscle activity (EMG) from wireless body-worn sensors to drive 3 different video games that implement upper limb exercises designed for people in wheelchairs. Cloud server recordings of EMG enabled long-term monitoring and feedback as well as multiplayer gaming. Bench testing of data transmission and power consumption were tested. Pilot testing was conducted on 4 individuals with spinal cord injury. Each had a WOW-Mobile system at home for 8 weeks. We measured the minutes for which the app was used and the exergames were played, and we integrated EMG as a measure of energy expended. We also conducted a perceived usefulness and usability questionnaire. RESULTS: Bench test results revealed that the app meets performance specifications to enable real-time gaming, cloud storage of data, and live cloud server transmission for multiplayer gaming. The EMG sampling rate of 64 samples per second, in combination with zero-loss data communication with the cloud server within a 10-m range, provided seamless control over the app exergames and allowed for offline data analysis. Each participant successfully used the WOW-Mobile system at home for 8 weeks, using the app for an average of 146 (range 89-267) minutes per week with the system, actively exergaming for an average of 53% of that time (39%-59%). Energy expenditure, as measured by integrated EMG, was found to be directly proportional to the time spent on the app (Pearson correlation coefficient, r=0.57-0.86, depending on the game). Of the 4 participants, 2 did not exercise regularly before the study; these 2 participants increased from reportedly exercising close to 0 minutes per week to exergaming 58 and 158 minutes on average using the WOW-Mobile fitness system. The perceived usefulness of WOW-Mobile in motivating participants to exercise averaged 4.5 on a 5-point Likert scale and averaged 5 for the 3 participants with thoracic level injuries. The mean overall ease of use score was 4.25 out of 5. CONCLUSIONS: Mobile app exergames driven by EMG have promising potential for encouraging and facilitating fitness for individuals in wheelchairs who have maintained arm and hand mobility.

Alternative Educational Approach to Wheelchair Accessibility Awareness.

IMPORTANCE: Despite criticisms of disability simulation and the limited research on the topic, disability simulation activities are often used to increase understanding of the challenges faced by people with disabilities. OBJECTIVE: To compare two disability awareness activities (disability simulation and an accessibility audit). DESIGN: A matched pretest-posttest design with two disability awareness activities to study attitudes, affect, cognitions, and behaviors toward disability. SETTING: A small college in New England. PARTICIPANTS: Eighty-eight undergraduate students. INTERVENTION: Participants took baseline tests online, after which they participated in a 1-hr on-campus activity. Participants were randomly assigned to either the disability simulation activity or the accessibility audit activity. Participants took posttest surveys online within 1 wk of completing the intervention. RESULTS: Results demonstrated that both activities lowered negative emotional responses toward people with disabilities, but participants who completed the tape measure activity had a larger decrease in scores. No significant differences were found between the scores of people who completed the different disability awareness activities. CONCLUSIONS: Given the many criticisms of disability simulation practices and marginal differences between activities, it is time for disability simulation activities to be retired from use. WHAT THIS ARTICLE ADDS: The results of this study demonstrate that disability simulation is no better than an accessibility audit in improving attitudes toward people with disabilities. Therefore, educators should cease use of these activities.

What do healthcare providers advise women with multiple sclerosis regarding pregnancy?

Pregnancy in multiple sclerosis (MS) is considered safe for both the woman and the child. Nevertheless, pregnancy issues in MS are complex both from a patient's and a provider's perspective. In an anonymous survey, 28 healthcare providers in the United States reported on the management of multiple sclerosis (MS) during pregnancy. Participants were asked about their recommendations to patients about the use of disease modifying therapies during pregnancy and breastfeeding and general recommendations about MS and pregnancy. Healthcare providers were also asked about sources from which they receive information about the management of patients with MS. Results suggested that healthcare providers do not discourage pregnancy for women with MS, recommend that women not use disease modifying therapies while pregnant, and have a positive view of breastfeeding for women with MS. Results also indicated the need for guidelines on patient management for pregnant women with MS.