It's Never Too Late: Debunking Myths About Communication and Adults With Severe Disabilities.

Communication infuses all dimensions and stages of life, influencing one's self-determination and quality of life. A number of empirical studies have demonstrated that people with severe disabilities continue to develop communication and language skills well into their adult years and make measurable gains when provided with appropriate communication services and supports. Several myths about age, ability, and experiences limit opportunities for persons with severe disabilities. In this paper, we confront and address these myths.

Interprofessional collaboration and communication to facilitate implementation of cognitive rehabilitation in persons with brain injury.

Cognitive rehabilitation encompasses therapeutic services directed at improving cognitive functioning and functional abilities in individuals with brain injury. The term cognitive rehabilitation, however, is often broadly defined, and interventions delivered by individual disciplines may vary in their conceptualizations. This paper, written by an interprofessional collaborative group of speech-language pathologists and rehabilitation psychologists/ neuropsychologists identifies challenges in interprofessional rehabilitation of cognitive problems as well as solutions for addressing those challenges. Specifically, the challenge of defining elements of cognitive rehabilitation is addressed with a recommendation for interprofessional training and development of a shared perspective; the problem of "siloed" care is addressed by recommendations for consistent and considerable efforts at interprofessional communication, use of shared language and emphasis on health literacy; and the challenge of access to collaborative care is addressed with the recommendation to increase utilization of telerehabilitation interventions. Our goal is to empower clinicians to not only turn to evidence-based practice to address patient needs, but to go further in implementing the evidence base by facilitating true collaborative interdisciplinary services via improved knowledge of best practice, and advocacy avenues within systems of care. Such an approach will maximize the ability of rehabilitation professionals to provide meaningful, person-centered interventions that will maximize patient outcomes.

What should be the future focus of mental health nursing? Exploring the perspectives of mental health nurses, consumers, and allied health staff.

The landscape of mental health care and service delivery is changing, as is our understanding of the underlying causes for mental distress. It is now apparent that biogenic explanations have been overstated and instead experiences of trauma and adversity constitute the main contributor to people's experiences of mental health challenges. The shortcomings of treatments traditionally used in mental health care are also evident, and with a contemporary focus on person-centred care, the utility of diagnostic labels has been called into question. Taking all this into consideration, this study sought to explore, what should be the future focus of mental health nursing? Three separate focus groups were conducted. One with a sample of senior clinical mental health nurses, one with a sample of consumer representatives and another with allied health professionals. The common theme across all three focus groups was the centrality of the therapeutic role of mental health nurses (MHNs). Consumers and allied health participants, in particular, advocated for a de-emphasis on medications, psychiatric diagnoses, and custodial practices. The MHNs role in health promotion, working collaboratively with consumers, being hopeful, understanding the individual perspective, and appreciating the social determinants of mental health were all highlighted in framing the future focus of MHN practice.

Enhancing person-centred care in inpatient mental health settings through supported person-side handover: a multi method study.

BACKGROUND: Many nursing contexts have introduced bedside handover, where the person in care participates in the transfer of clinical information, with benefits for person, carers, and clinicians. This type of handover has been implemented across a number of mental health settings, but there is limited evidence regarding implementation approaches or of practice change. This study reports the development and evaluation of a co-produced education and support package. AIM: To evaluate changes in nurses' practice regarding bedside (person-side) handover following implementation of a structured education and support package. DESIGN: Multi-method design incorporating nurse surveys and chart audit. METHODS: The survey and audit were conducted in 2019-2020 on two inpatient mental health units in a metropolitan health service immediately prior to, and 6 months after, implementation, with 70 survey responses and 52 files audited. Non-parametric tests assessed change, and text comments were reported. RESULTS: Significant improvements were observed in nurses' reports of confidence, the ability to maintain privacy, identified benefits for the person and in information transfer. In contrast, the chart audit identified no change in documentation of this practice. CONCLUSIONS: The implementation of a co-produced education and support package demonstrated positive practice change in engaging people receiving care in handover. This approach to handover provides increased opportunity for nurses to work in partnership with people receiving mental healthcare, facilitating collaborative person-centred care and shared decision making.

Stigma and discrimination in individuals with severe and persistent mental illness in an assertive community treatment team: Perceptions of families and healthcare professionals.

AIM: To explore family member and staff perceptions of clients' experiences of stigma and discrimination, in those living with severe and persistent mental illness in an Assertive Community Treatment Team. METHOD: This qualitative study used the Discrimination and Stigma Scale to conduct structured face-to-face and telephone interviews of family members and healthcare professionals, working with the Assertive Outreach Team (AOT) (an Assertive Community Treatment Team) of a northern inner suburban catchment of Sydney, New South Wales, Australia. RESULTS: Forty-one people participated in the study (23 AOT clinical staff members and 18 family members). Family and clinical staff commonly reported stigma and discrimination amongst their relatives and clients, respectively. Four overarching themes emerged from the data: (1) appearance and behaviour, (2) avoidance and being shunned, (3) key areas of life affected by discrimination and (4) impacts of discrimination and skills to cope with discrimination. CONCLUSION: Reports of stigma and discrimination were common, yet varied between groups with clinical staff commonly witnessing experiences and impacts of discrimination in everyday life, with families' reports being substantially less. Due to the strong advocacy and support provided by the AOT model, clinical staff often buffered experiences of stigma and discrimination. Further research is needed to explore effective interventions to reduce experiences of discrimination in this population group.

Eugenics Redux: "Reproductive Benefit" as a Rationale for Newborn Screening.

In recent years, as newborn screening has expanded to include conditions for which treatment is questionable, new rationales for screening have proliferated. One such rationale is the potential reproductive benefit to parents from the detection of a genetic condition or carrier status in infants. An unanticipated consequence of invoking knowledge of reproductive risk as a major benefit of screening has been to open newborn screening to the charge that it constitutes state-sanctioned eugenics. Thus, an endeavor that had been viewed as the converse of state programs of selective breeding has come to be seen in some quarters as yet another of its incarnations. The result has been serious and self-inflected harm to the reputation of newborn screening programs.

Recommended Protocols for Instrumental Assessment of Voice: American Speech-Language-Hearing Association Expert Panel to Develop a Protocol for Instrumental Assessment of Vocal Function.

Purpose: The aim of this study was to recommend protocols for instrumental assessment of voice production in the areas of laryngeal endoscopic imaging, acoustic analyses, and aerodynamic procedures, which will (a) improve the evidence for voice assessment measures, (b) enable valid comparisons of assessment results within and across clients and facilities, and (c) facilitate the evaluation of treatment efficacy. Method: Existing evidence was combined with expert consensus in areas with a lack of evidence. In addition, a survey of clinicians and a peer review of an initial version of the protocol via VoiceServe and the American Speech-Language-Hearing Association's Special Interest Group 3 (Voice and Voice Disorders) Community were used to create the recommendations for the final protocols. Results: The protocols include recommendations regarding technical specifications for data acquisition, voice and speech tasks, analysis methods, and reporting of results for instrumental evaluation of voice production in the areas of laryngeal endoscopic imaging, acoustics, and aerodynamics. Conclusion: The recommended protocols for instrumental assessment of voice using laryngeal endoscopic imaging, acoustic, and aerodynamic methods will enable clinicians and researchers to collect a uniform set of valid and reliable measures that can be compared across assessments, clients, and facilities.

Role of resilience in the rehabilitation of adults with acquired brain injury.

PURPOSE: The goals of this review paper are to present an overview of the literature on resilience in adults with ABI, to describe approaches to measuring resilience in clinical practice and to discuss practical suggestions for promoting resilience in rehabilitation of adults with ABI. METHOD: We employed systematic review of journal articles, books, and websites related to resilience in adults with acquired brain injury (ABI). RESULTS: Resilience was associated with adaptation and adjustment for individuals faced with serious injury such as ABI. However, research examining the construct of resilience is limited. CONCLUSION: While rehabilitation typically focuses on the identification and reduction of impairments for improving functioning, a focus on resilience may allow for recovery in a broader sense that exceeds expected outcomes.

Pragmatic communication abilities in children and adults: implications for rehabilitation professionals.

PURPOSE: The purpose of this study is to provide a review of pragmatic communication ability and its disorders, as a resource for rehabilitation team members. This review is a product of the Joint Committee on Interprofessional Relations Between the American Speech-Language-Hearing Association and Division 40: Society for Clinical Neuropsychology of the American Psychological Association. METHOD: Review of the literature and expert opinion. RESULTS: We summarize key theoretical frameworks that guide assessment of pragmatic communication ability, describe the developmental progression of pragmatic skills and expectations for children and adults, provide an overview of pragmatic communication disorders, and discuss current assessment approaches. CONCLUSIONS: An understanding of pragmatic communication disorders may assist all rehabilitation team members, as impairments in this domain may have significant effects on rehabilitation progress and outcomes. Implications for Rehabilitation Pragmatic communication ability is the ability to use language in context, beyond understanding and expressing basic word meanings (semantics) in the correct grammatical forms (syntax). Pragmatic communication deficits have been documented in many of the populations frequently referred for rehabilitation, and can affect both progress during rehabilitation and outcomes from treatment. A broader understanding of pragmatic communication functions can help team members identify a patient's strengths and limitations, inform treatment planning, and improve communication among healthcare professionals, thereby contributing to improved outcomes for patients and their families.

Stigma and discrimination experienced by people living with severe and persistent mental illness in assertive community treatment settings.

AIMS: To describe the perceived experiences of stigma and discrimination among people living with severe and persistent mental illness in assertive community treatment (ACT teams) settings in New South Wales (NSW), Australia. METHODS: The Discrimination and Stigma Scale (DISC) was used in this cross-sectional study with people living with severe and persistent mental illness. The DISC is a reliable and valid, quantitative and qualitative instrument used to explore and measure levels of negative, anticipated and positive discrimination. Relevant clinical history and socio-demographic information were also collected. RESULTS: A total of 50 clients participated, with 40 (80%) reporting experienced negative discrimination in at least one life area. Negative discrimination was most commonly experienced in being avoided or shunned (n=25, 50%), by neighbours (n=24, 48%) and family (n=23, 46%). Anticipated discrimination was common, with half of participants (n=25, 50%) feeling the need to conceal their mental health diagnosis. CONCLUSION: Discrimination was highly prevalent in everyday aspects of life. While healthcare professionals often tend to increase perceived stigma and discrimination, this was only experienced in interactions with general health professionals, while interactions with ACT team members decreased perceived stigma and increased positive discrimination. This indicates that healthcare professionals potentially have a significant role in reducing stigma and discrimination in mental health and that such an effect may be optimised in an ACT team setting.

Reflections on the Historiography of American Eugenics: Trends, Fractures, Tensions.

By the 1950s, eugenics had lost its scientific status; it now belonged to the context rather than to the content of science. Interest in the subject was also at low ebb. But that situation would soon change dramatically. Indeed, in an essay-review published in 1993, Philip Pauly commented that a "eugenics industry" had come to rival the "Darwin industry" in importance, although the former seemed less integrated than the latter. Since then, the pace of publication on eugenics, including American eugenics, has only accelerated, while the field has become even more fractured, moving in multiple and even contradictory directions. This essay explores the trajectory of work on the history of American eugenics since interest in the subject revived in the 1960s, noting trends and also fractures. The latter are seen to result partly from the fact that professional historians no longer own the subject, which has attracted the interest of scholars in several other disciplines as well as scientists, political activists, and journalists, and also from the fact that the history of eugenics has almost always been policy-oriented. Historians' desire to be policy-relevant and at the same time attentive to context, complexity, and contingency has generated tensions at several levels: within individuals, among historians, and between professional historians and others who also engage with the history of eugenics. That these tensions are resolved differently by different authors and even by the same authors at different times helps explain why the fragmentation that Pauly noted is not likely to be overcome anytime soon.

Communication Services and Supports for Individuals With Severe Disabilities: Guidance for Assessment and Intervention.

The National Joint Committee for the Communication Needs of People With Severe Disabilities (NJC) reviewed literature regarding practices for people with severe disabilities in order to update guidance provided in documents originally published in 1992. Changes in laws, definitions, and policies that affect communication attainments by persons with severe disabilities are presented, along with guidance regarding assessment and intervention practices. A revised version of the Communication Bill of Rights, a powerful document that describes the communication rights of all individuals, including those with severe disabilities is included in this article. The information contained within this article is intended to be used by professionals, family members, and individuals with severe disabilities to inform and advocate for effective communication services and opportunities.

Validity and Reliability of the US National Cancer Institute's Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).

IMPORTANCE: To integrate the patient perspective into adverse event reporting, the National Cancer Institute developed a patient-reported outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). OBJECTIVE: To assess the construct validity, test-retest reliability, and responsiveness of PRO-CTCAE items. DESIGN, SETTING, AND PARTICIPANTS: A total of 975 adults with cancer undergoing outpatient chemotherapy and/or radiation therapy enrolled in this questionnaire-based study between January 2011 and February 2012. Eligible participants could read English and had no clinically significant cognitive impairment. They completed PRO-CTCAE items on tablet computers in clinic waiting rooms at 9 US cancer centers and community oncology practices at 2 visits 1 to 6 weeks apart. A subset completed PRO-CTCAE items during an additional visit 1 business day after the first visit. MAIN OUTCOMES AND MEASURES: Primary comparators were clinician-reported Eastern Cooperative Oncology Group Performance Status (ECOG PS) and the European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire (QLQ-C30). RESULTS: A total of 940 of 975 (96.4%) and 852 of 940 (90.6%) participants completed PRO-CTCAE items at visits 1 and 2, respectively. At least 1 symptom was reported by 938 of 940 (99.8%) participants. Participants' median age was 59 years; 57.3% were female, 32.4% had a high school education or less, and 17.1% had an ECOG PS of 2 to 4. All PRO-CTCAE items had at least 1 correlation in the expected direction with a QLQ-C30 scale (111 of 124, P<.05 for all). Stronger correlations were seen between PRO-CTCAE items and conceptually related QLQ-C30 domains. Scores for 94 of 124 PRO-CTCAE items were higher in the ECOG PS 2 to 4 vs 0 to 1 group (58 of 124, P<.05 for all). Overall, 119 of 124 items met at least 1 construct validity criterion. Test-retest reliability was 0.7 or greater for 36 of 49 prespecified items (median [range] intraclass correlation coefficient, 0.76 [0.53-.96]). Correlations between PRO-CTCAE item changes and corresponding QLQ-C30 scale changes were statistically significant for 27 prespecified items (median [range] r=0.43 [0.10-.56]; all P≤.006). CONCLUSIONS AND RELEVANCE: Evidence demonstrates favorable validity, reliability, and responsiveness of PRO-CTCAE in a large, heterogeneous US sample of patients undergoing cancer treatment. Studies evaluating other measurement properties of PRO-CTCAE are under way to inform further development of PRO-CTCAE and its inclusion in cancer trials.