Preferred Communication Strategies for People with Communication Disabilities in Health Care Encounters: a Qualitative Study.

BACKGROUND: People with communication disabilities (CDs), which includes disabilities in speech, language, voice and/or hearing, experience health and healthcare disparities. A barrier to accessing high-quality, equitable care is the lack of effective communication between patients and their providers. OBJECTIVE: In designing a patient-prompted tool to facilitate communication, we analyzed qualitative feedback on communication strategies and the experience of people with CDs, caregivers, and providers in healthcare encounters. We aimed to describe communication strategies that patients with CDs find most useful and optimize a tool for patients to share their communication strategy preferences during clinical encounters. While patient-provider communication is paramount in every interaction, we aimed to highlight the intricacies of optimizing communication for this population. DESIGN: We performed a qualitative study utilizing focus groups and interviews with patients with CDs, their caregivers, and healthcare providers. PARTICIPANTS: A total of 46 individuals participated in focus groups or interviews; 26 participants self-reported a CD, nine were caregivers, and 11 were providers. Participants represented diverse types of CDs, including stuttering, aphasia, hearing loss, and people with autism or cerebral palsy who use assistive technology to communicate. APPROACH: Analysis of qualitative interview and focus group data was guided by a qualitative content analysis approach. KEY RESULTS: We identified three themes: (1) While communication strategies should be individualized, participants agreed upon a consolidated list of best strategies and accommodations. We used this consolidated list to finalize tool development. (2) Patients and providers preferred disclosure of the CD and desired communication strategies before the appointment. (3) Providers often do not use communication strategies and accommodations during clinical encounters. CONCLUSIONS: For patients with CDs, it is critical to acknowledge and document the CD and individualize communication strategies during healthcare visits to facilitate communication. Studies are needed to evaluate whether improved communication strategy usage leads to improved health outcomes for this population.

The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials.

INTRODUCTION: Involving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well-planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects. METHOD: The aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities. RESULTS: Six youth aged 19-34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision-makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum. CONCLUSION: The Involvement Matrix was used to plan and implement the involvement of youth with severe communication disabilities in codeveloping health materials for use during the COVID-19 pandemic. The Involvement Matrix can be applied together with AAC to enable meaningful involvement of youth in a health research project as listeners, advisors, decision-makers and partners. PATIENT OR PUBLIC CONTRIBUTION: This study project was codeveloped with youth with severe communication disabilities who use AAC in South Africa. A person with lived experience was involved as an advisor to the health material development process and in the drafting of the manuscript.

Adults with Communication Disabilities Experience Poorer Health and Healthcare Outcomes Compared to Persons Without Communication Disabilities.

BACKGROUND: Persons with speech, language, and/or voice disabilities (collectively referred to as communication disabilities (CD)) represent 10% of the US population, yet their healthcare outcomes have not been described. Generally, research shows that persons with disabilities have poorer health and healthcare outcomes than their non-disabled peers. OBJECTIVES: To examine the health and healthcare outcomes of persons with CD compared to persons without CD. DESIGN: Retrospective cohort study of the 2012 National Health Interview Survey, which contained the first supplemental questions on CD. We compared proportional differences in outcomes; logistic and ordered logistic regression assessed the outcome measures across CD categories, controlling for demographics, non-communication disabilities, and chronic conditions. Findings are weighted to permit national inferences. PARTICIPANTS: Adults (≥ 18 years old) were divided into 4 mutually exclusive groups: people with voice disabilities only; speech/language disabilities only; speech/language and voice disabilities; and people without CD. MAIN MEASURES: Chronic health conditions; self-rated health; access to care; unmet needs for care; healthcare utilization. KEY RESULTS: Adults with CD more frequently had ≥ 1 chronic condition (voice 67.9%, speech/language 68.6%, speech/language and voice 79.9%, no CD 50.1%, p < 0.001) and reported fair/poor health (voice 19.5%, speech/language 32.5%, speech/language and voice 48.3%, no CD 11.2%, p < 0.001) compared to those without CD. Adults with CD more frequently utilized healthcare compared to those without CD. However, persons with CD endorsed greater difficulties accessing care than those without CD, including identifying a usual source of care, trouble finding a physician, and delaying or foregoing care (e.g., delayed due to availability of care: voice 26.1%, speech/language 37.2%, speech/language and voice 30.8% no CD 16.1%, p < 0.001). CONCLUSIONS: Persons with CD are medically complex and experience greater challenges accessing healthcare than persons without CD. Healthcare providers need support and tools to provide equitable care that addresses the medical needs of persons with CD.

Meeting the communication support needs of children and young people with intellectual disabilities in the Bolivian Andes.

Services available for people with disabilities in Bolivia tend to be fragmented and costly. Children and adults with intellectual disabilities are more likely to have a related communication disability and are thus both literally and metaphorically excluded from having a voice. The following research aimed to explore the experiences of accessing services by people with communication disabilities in Bolivia through semi-structured interviews and one focus group carried out with family members, professionals, service providers, educators and policymakers. It aimed to establish the nature of current services in Bolivia where knowledge, information and resources are scarce. Findings indicated the need to consider an alternative to a medical model approach through a focus on empowering other stakeholders to participate more fully in meeting communication support needs. Conclusions plot ideas for future service delivery and emphasize the central power of sharing practical and expert knowledge.

The Video Interaction Guidance approach applied to teaching communication skills in dentistry.

PURPOSE: To examine dentists' views of a novel video review technique to improve communication skills in complex clinical situations. MATERIALS AND METHODS: Dentists (n = 3) participated in a video review known as Video Interaction Guidance to encourage more attuned interactions with their patients (n = 4). Part of this process is to identify where dentists and patients reacted positively and effectively. Each dentist was presented with short segments of video footage taken during an appointment with a patient with intellectual disabilities and communication difficulties. Having observed their interactions with patients, dentists were asked to reflect on their communication strategies with the assistance of a trained VIG specialist. RESULTS: Dentists reflected that their VIG session had been insightful and considered the review process as beneficial to communication skills training in dentistry. They believed that this technique could significantly improve the way dentists interact and communicate with patients. The VIG sessions increased their awareness of the communication strategies they use with their patients and were perceived as neither uncomfortable nor threatening. DISCUSSION: The VIG session was beneficial in this exploratory investigation because the dentists could identify when their interactions were most effective. Awareness of their non-verbal communication strategies and the need to adopt these behaviours frequently were identified as key benefits of this training approach. One dentist suggested that the video review method was supportive because it was undertaken by a behavioural scientist rather than a professional counterpart. CONCLUSION: Some evidence supports the VIG approach in this specialist area of communication skills and dental training.

Older adults with communication disabilities and their use of communication support at doctor's visits: a nationally representative study.

PURPOSE: Older adults with communication disabilities (CDs) experience barriers to receiving care and face a paucity of accommodations for their disability. Utilizing someone that supports communication with healthcare providers (communication support persons) may be a way that this group self-supports their disability. We examined if this utilization was independently associated with CDs among older adults. We also sought to understand if socioeconomic factors were associated with utilization. METHODS: We used the 2015 National Health and Aging Trends Survey (NHATS) to conduct a cross-sectional analysis of Medicare beneficiaries (n = 5954) with functional hearing, expressive, or cognitive difficulties. We calculated a weighted, population prevalence and an adjusted prevalence ratio (APR) controlling for sociodemographic, health and other disability factors. RESULTS: Among community dwelling older adults, having CDs was associated with higher utilization of a communication support person at medical visits (APR: 1.41 [CI: 1.27 - 1.57]). Among adults with CDs, Black adults and women had lower levels of utilization as compared to White adults and men, respectively. CONCLUSION: Communication support persons may be a way that older adults with CDs self-support their disability. However, not all older adults with CDs bring someone and variation by social factors could suggest that unmet support needs exist.

Over half of older adults with communication disabilities do not utilize a communication support person at doctors' visits, and utilization differs by race and gender.Rehabilitation professionals should educate their older adult patients with communication disabilities on this practice and collaborate with speech-language pathologists (SLPs) and audiologists (AuDs) on how to accommodate this population's disability.SLPs and AuDs can directly train support persons, other rehabilitation professionals, and physicians on accommodating these patients. For patients who don't bring a support person, SLPs and AuDs can plan alternative communication disability supports to use in healthcare settings, so that all older adults with CDs can equitably access their healthcare.

Prevalence and sociodemographic characteristics of US community-dwelling older adults with communication disabilities, using the national health and aging trends survey.

INTRODUCTION: Identifying the population-level prevalence of a disability group is a prerequisite to monitoring their inclusion in society. The prevalence and sociodemographic characteristics of older adults with communication disabilities (CDs) are not well established in the literature. In this study we sought to describe the prevalence and sociodemographic characteristics of community-dwelling older adults experiencing difficulties with understanding others or being understand when communicating in their usual language. METHODS: We conducted a cross-sectional analysis of the National Health and Aging Trends Survey (2015), a nationally representative survey of Medicare beneficiaries ages ≥ 65 years old (N = 7,029). We calculated survey weight-adjusted prevalence estimates by mutually exclusive subgroups of no, hearing only, expressive-only, cognitive only, multiple CDs, and an aggregate any-CD prevalence. We described race/ethnicity, age, gender, education, marital status, social network size, federal poverty status, and supplemental insurance for all groups. Pearson's chi-squared statistic was used to compare sociodemographic characteristics between the any-CD and no-CD groups. RESULTS: An estimated 25.3% (10.7 million) of community-dwelling older adults in the US experienced any-CDs in 2015; approximately 19.9% (8.4 million) experienced only one CD while 5.6% (2.4 million) had multiple. Older adults with CDs were more likely to be of Black race or Hispanic ethnicity as compared to older adults without CDs (Black 10.1 vs. 7.6%; Hispanic: 12.5 vs. 5.4%; P < 0.001). They also had lower educational attainment (Less than high school: 31.0 vs 12.4%; P < 0.001), lower poverty levels (<100% Federal poverty level: 23.5% vs. 11.1%; P < 0.001) and less social supports (Married: 51.3 vs. 61.0%; P < 0.001; Social network ≤ 1 person: 45.3 vs 36.0%; P < 0.001). CONCLUSIONS: The proportion of the older adult population experiencing any-CDs is large and disproportionately represented by underserved sociodemographic groups. These findings support greater inclusion of any-CDs into population-level efforts like national surveys, public health goals, health services, and community research aimed at understanding and addressing the access needs of older adults who have disabilities in communication.

[Communication with patients in the intensive care unit]. / Kommunikation mit Patientinnen auf der Intensivstation.

Communication is one of the fundamental human needs. It includes not only expressing oneself but also verbal and nonverbal communication and establishing contact to other people. In the context of intensive care treatment, influences such as sedation, delirium or the need for an artificial airway, be it a tube or tracheostomy, can make verbal communication almost impossible. In addition, nonverbal communication possibilities are often restricted by physical weakness or illness. Despite these difficulties, there is always a communication relationship, verbal or nonverbal, between patients in the intensive care unit (ICU) and the team. A lack of willingness in the team or mistakes in communication leave patients with a perception of not being heard or not being noticed. As a result, the patients can develop an impression of powerlessness and helplessness. It is precisely in these situations of dependency that there is a risk of overriding the patient's will and exercising coercion. Communication with patients in the ICU is a challenging process. Difficulties that arise here not only burden patients in the ICU but can also lead to frustration and moral stress in the team. The team should reflect on the imbalance of influences on communication between patients and the team in order to help the patients to survive and cope with the critical period by using tools and appreciative communication.

How is right hemisphere communication disorder disabling? Evidence from response mobilizing actions in conversation.

AIM: Assessment and intervention strategies for communication disorders caused by right hemisphere stroke are at an early stage of development. There is also little evidence on how right hemisphere communication disorder is disabling for everyday life. This study explores how a woman with conversational problems following right hemisphere stroke participated in everyday conversation with family members. METHOD: One hour of triadic conversation was recorded and analyzed using the descriptive qualitative methodology of conversation analysis. It focused on attempts by the woman with right hemisphere stroke to direct conversation with "response mobilizing" communicative acts, i.e., communicative acts that set out clear expectations about who should speak, and how they should respond. RESULTS: Seventy-eight communicative acts produced by the woman with right hemisphere communication disorder were divided into five groupings based on how her conversation partners addressed them. Around half of her response mobilizing communicative acts received unsupportive responses from her conversation partners, including minimal acknowledgements, explicit rejections, and ignoring responses. CONCLUSION: The findings of this study provide novel insight into the ways that right hemisphere communication disorder affects routine communication, and the nature of the disability it causes. This information will support the future development of evidence-based speech pathology assessment and intervention for right hemisphere stroke.IMPLICATIONS FOR REHABILITATIONRight hemisphere stroke can have complex implications for communication, but little is known about how they manifest in daily life.Familiar communication partners may deal with troublesome communicative acts in conversation by preventing them from developing, which may be useful information for speech pathology assessment.Speech pathologists should consider sampling everyday conversation because it can provide insight into the ways that communication disorders caused by right hemisphere stroke restrict participation in daily life.

"Second guessing yourself all the time about what they really mean ": Cognitive differences between autistic and non-autistic adults in understanding implied meaning.

This study investigated cognitive differences between autistic and non-autistic people in understanding implied meaning in conversation using a novel computerized test, the Implicature Comprehension Test. Controlling for core language ability, autistic participants (N = 66) were over twice as likely to endorse a non-normative interpretation of an implied meaning and over five times as likely to select "do not know" when asked about the presence of an implied meaning, compared to non-autistic participants (N = 118). A further experiment suggested that the selection of "do not know" reflected a cognitive preference for certainty and explicit communication, and that the normative inference could often be made when the test format was more constrained. Our research supports the hypothesis that autistic individuals can find it challenging to process language in its pragmatic context, and that cognitive preferences play a role in this. LAY SUMMARY: We investigated differences between autistic and non-autistic people in understanding implied meanings in conversation. We found that autistic people were more likely to select a different interpretation of implied meanings compared to other people, and also much more likely to avoid processing implied meanings when the task allowed this. Our research supports the view that autistic people can find it challenging to process indirect meanings, and that they tend to prefer explicit forms of communication.

Development and evaluation of a mobile AAC: a virtual therapist and speech assistant for people with communication disabilities.

PURPOSE: The currently existing Augmentative and Alternative Communication (AAC) technologies have limitations to produce the best communication rehabilitation outcomes and therefore a better solution is needed. METHOD: In this work, a mobile AAC app was developed based on results from research studies. Sophisticated AAC language programming, embedded training materials, and real-time communication performance reporting were integrated into the app. Two groups of study participants were recruited to participate a usability study and a preliminary feasibility study for the purpose of evaluating this mobile AAC app, respectively. RESULTS: A tablet-based AAC app was developed to support communication rehabilitation. User studies of the app were conducted and included able-bodied individuals and people with verbal communication disabilities. All study participants agreed that the app establishes a usable alternative treatment protocol for communication rehabilitation. CONCLUSIONS: The app's integrated features have great potential to maximize users' communication effectiveness, enhance language skills, and ultimately improve users' quality of life. Implications for rehabilitation We have developed and evaluated an integrated mobile AAC language-based app. This tablet-based app integrated AAC with embedded trainings and real-time performance report.

Use of the My Health Record by people with communication disability in Australia: A review to inform the design and direction of future research.

BACKGROUND: People with communication disability often struggle to convey their health information to multiple service providers and are at increased risk of adverse health outcomes related to the poor exchange of health information. OBJECTIVE: The purpose of this article was to (a) review the literature informing future research on the Australian personally controlled electronic health record, 'My Health Record' (MyHR), specifically to include people with communication disability and their family members or service providers, and (b) to propose a range of suitable methodologies that might be applied in research to inform training, policy and practice in relation to supporting people with communication disability and their representatives to engage in using MyHR. METHOD: The authors reviewed the literature and, with a cross-disciplinary perspective, considered ways to apply sociotechnical, health informatics, and inclusive methodologies to research on MyHR use by adults with communication disability. RESEARCH OUTCOMES: This article outlines a range of research methods suitable for investigating the use of MyHR by people who have communication disability associated with a range of acquired or lifelong health conditions, and their family members, and direct support workers. CONCLUSION: In planning the allocation of funds towards the health and well-being of adults with disabilities, both disability and health service providers must consider the supports needed for people with communication disability to use MyHR. There is an urgent need to focus research efforts on MyHR in populations with communication disability, who struggle to communicate their health information across multiple health and disability service providers. The design of studies and priorities for future research should be set in consultation with people with communication disability and their representatives.

Effect of educational module on knowledge of primary school teachers regarding early symptoms of childhood psychiatric disorders.

CONTEXT: University-based pre-service educational programs do not adequately prepare the teachers to have sufficient knowledge and skill for identifying a wide variety of symptoms related to mental health disorders among children. AIMS: To assess the effect of educational module on knowledge of primary school teachers regarding early symptoms of childhood psychiatric disorders. SETTINGS AND DESIGN: A pre experimental study on a sample of 35 primary school teachers was done in selected schools of Delhi. MATERIALS AND METHODS: Self-instructional module on early symptoms of childhood psychiatric disorders (SIM on ESCD) was developed. Data was collected by using standardized tools including the structured questionnaire for 'Demographic and selected variables' and pre-test knowledge questionnaire. The subjects were exposed to SIM on ESCD for a period of 15 days. Knowledge regarding early symptoms of childhood psychiatric disorders was assessed twice, first one being before exposure to module and the next one on 16(th) day of exposure to module. STATISTICAL ANALYSIS: Data were analyzed using statistical package STATA 9.0 version. RESULTS: Primary school teachers who have been teaching in government schools had high pre-test knowledge score than that in private sector. There was significant difference in mean knowledge score of primary school teachers before (9.71) and after (15.60) the administration of SIM on ESCD. Younger teachers and those who had less years of teaching experience had more knowledge gain score than those who were older and had more teaching experience. CONCLUSIONS: In the absence of adequate pre-service and in-service education of primary school teachers on early symptoms of childhood psychiatric disorders, SIM on ESCD is a highly effective and viable method for improving primary school teachers' knowledge on early symptoms of childhood psychiatric disorders.