ItemInternational Employment Statistics for People With Intellectual Disability—The Case for Common Metrics(Wiley, 2015-04-29) Lysaght, Rosemary; Šiška, Jan; Koenig, OliverThe World Report on Disability identifies employment as an important element of social participation. The Report also points to the need for research that crosses national boundaries to identify and address central areas of concern. However, such efforts are hampered with respect to intellectual disability (ID) by inconsistencies in the population definitions used, the definition of employment or employability, and metrics of employment participation. The authors explore the varied ways in which employment participation rates for people with ID are determined and reported in jurisdictions around the world, and note that with respect to employment metrics, there remains substantial variation in the methods used in data collection and reporting across agencies and countries. They also note that close inspection of methodologies is required in order to interpret data from any official statistical agency (as even when methods and definitions are explicit, the variations in approaches make comparisons difficult). Recommendations for harmonizing disparate definitions and metrics include a systematic analysis of the terminology and methods used in national surveys that would assist in identifying which data are comparable, agreement on a protocol and process for examining employment outcomes in the ID population, and the creation of an international panel on employment and ID charged to identify common terminology and population parameters to be specified in sample selection and description in localized research and studies. ItemDecision Coaching for People Making Healthcare Decisions(Wiley, 2021-11-08) Jull, Janet; Kopke, Sascha; Smith, Maureen; Carley, Meg; Finderup, Jeanette; Rahn, Anne; Boland, Laura; I Dunn, Sandra; Dwyer, Andrew; Jurgen, Kasper; Kienlin, Simone; Legare, France; Lewis, Krystina B.; Lyddiatt, Anne; Rutherford, Claudia; Zhao, Junqiang; Rader, Tamara; Graham, Ian D; Stacey, DawnBackground: Decision coaching is non-directive support delivered by a healthcare provider to help patients prepare to actively participate in making a health decision. ‘Healthcare providers’ are considered to be all people who are engaged in actions whose primary intent is to protect and improve health (e.g. nurses, doctors, pharmacists, social workers, health support workers such as peer health workers). Little is known about the effectiveness of decision coaching. Objectives: To determine the effects of decision coaching (I) for people facing healthcare decisions for themselves or a family member (P) compared to (C) usual care or evidence-based intervention only, on outcomes (O) related to preparation for decision making, decisional needs and potential adverse effects. Search methods: We searched the Cochrane Library (Wiley), Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE (Ovid), Embase (Ovid), PsycINFO (Ovid), CINAHL (Ebsco), Nursing and Allied Health Source (ProQuest), and Web of Science from database inception to June 2021. Selection criteria: We included randomised controlled trials (RCTs) where the intervention was provided to adults or children preparing to make a treatment or screening healthcare decision for themselves or a family member. Decision coaching was defined as: a) delivered individually by a healthcare provider who is trained or using a protocol; and b) providing non-directive support and preparing an adult or child to participate in a healthcare decision. Comparisons included usual care or an alternate intervention. There were no language restrictions. Data collection and analysis: Two authors independently screened citations, assessed risk of bias, and extracted data on characteristics of the intervention(s) and outcomes. Any disagreements were resolved by discussion to reach consensus. We used the standardised mean difference (SMD) with 95% confidence intervals (CI) as the measures of treatment effect and, where possible, synthesised results using a random-effects model. If more than one study measured the same outcome using different tools, we used a random-effects model to calculate the standardised mean difference (SMD) and 95% CI. We presented outcomes in summary of findings tables and applied GRADE methods to rate the certainty of the evidence. Main results: Out of 12,984 citations screened, we included 28 studies of decision coaching interventions alone or in combination with evidence-based information, involving 5509 adult participants (aged 18 to 85 years; 64% female, 52% white, 33% African-American/Black; 68% post-secondary education). The studies evaluated decision coaching used for a range of healthcare decisions (e.g. treatment decisions for cancer, menopause, mental illness, advancing kidney disease; screening decisions for cancer, genetic testing). Four of the 28 studies included three comparator arms. For decision coaching compared with usual care (n = 4 studies), we are uncertain if decision coaching compared with usual care improves any outcomes (i.e. preparation for decision making, decision self-confidence, knowledge, decision regret, anxiety) as the certainty of the evidence was very low. For decision coaching compared with evidence-based information only (n = 4 studies), there is low certainty-evidence that participants exposed to decision coaching may have little or no change in knowledge (SMD -0.23, 95% CI: -0.50 to 0.04; 3 studies, 406 participants). There is low certainty-evidence that participants exposed to decision coaching may have little or no change in anxiety, compared with evidence-based information. We are uncertain if decision coaching compared with evidence-based information improves other outcomes (i.e. decision self-confidence, feeling uninformed) as the certainty of the evidence was very low. For decision coaching plus evidence-based information compared with usual care (n = 17 studies), there is low certainty-evidence that participants may have improved knowledge (SMD 9.3, 95% CI: 6.6 to 12.1; 5 studies, 1073 participants). We are uncertain if decision coaching plus evidence-based information compared with usual care improves other outcomes (i.e. preparation for decision making, decision self-confidence, feeling uninformed, unclear values, feeling unsupported, decision regret, anxiety) as the certainty of the evidence was very low. For decision coaching plus evidence-based information compared with evidence-based information only (n = 7 studies), we are uncertain if decision coaching plus evidence-based information compared with evidence-based information only improves any outcomes (i.e. feeling uninformed, unclear values, feeling unsupported, knowledge, anxiety) as the certainty of the evidence was very low. Authors' conclusions: Decision coaching may improve participants’ knowledge when used with evidence-based information. Our findings do not indicate any significant adverse effects (e.g. decision regret, anxiety) with the use of decision coaching. It is not possible to establish strong conclusions for other outcomes. It is unclear if decision coaching always needs to be paired with evidence-informed information. Further research is needed to establish the effectiveness of decision coaching for a broader range of outcomes. ItemTremor during movement correlates well with disability in people with essential tremor(Wiley, 2011-09) Norman, Kathleen E; D'Amboise, Shauna N; Pari, Giovanna; Heroux, Martin EEssential tremor is the most common movement disorder, typically characterized by the presence of both postural and kinetic tremor of the hand. In recent studies, we described the effects of altering force and load conditions on tremor amplitude and power in people with essential tremor. In the same participants, we also measured tremor-related functional disability. In this article we report on the current study on correlations of measures of tremor severity with those of tremor-related functional disability. Twenty-one participants with essential tremor had tremor measured in their more tremorous hand. Power spectral and amplitude measures of tremor were calculated for each of 16 conditions: force tremor at 4 submaximal force levels, postural tremor in unloaded and 3 submaximal load conditions, and kinetic tremor in unloaded and 3 submaximal load conditions for each of concentric and eccentric contractions of the wrist extensors. Participants were rated on the hand items of the Fahn-Tolosa-Marin rating scale and timed on the unilateral hand tasks of the Test Évaluant la Performance des Membres supérieurs des Personnes Âgées. The most consistently high and significant correlations were found between kinetic tremor measures and the hand task scores and tremor-B scores (r = 0.548–0.780, P < .01). Postural tremor measures correlated with disability measures only in loaded conditions, most consistently with the hand task measures (r = 0.640–0.725, P < .01). Thus, measures of kinetic tremor and loaded postural tremor, but not unloaded postural tremor or force tremor, relate well to disability captured with dynamic tasks. ItemEmployer Approaches to Recognizing and Managing Intermittent Work Capacity(Emerald Publishing, 2022-01-07) Lysaght, Rosemary; Krupa, Terry; Gregory, Allan W.Purpose – This study explored how intermittent work capacity (IWC) presents in workplaces in order to advance conceptual understanding of this phenomenon and establish a set of initial principles to assist in its management. Design/methodology/approach – The study followed a grounded theory approach in a multi-stage data collection process. In total, 25 employers representing diverse employment sectors were recruited with a goal of exploring their experiences with IWC. The first phase of the study comprised individual interviews with all employers. A subset of these employers later participated in two focus groups organized by company size. Finally, in-depth case studies were conducted with two information rich organizations to understand their approaches to managing IWC. Analysis methods consistent with grounded theory were used. Findings – Although employers have a variety of positive motivations for supporting employees with IWC, they are challenged by the uncertainty arising from the unpredictable work patterns associated with IWC. Five distinct expressions of uncertainty were identified. Negotiation of this uncertainty involves attention to a range of factors, including intrapersonal factors, workplace relations and morale, specific job demands, communication processes, and structural and organizational factors. Research limitations/implications – The findings of this study advance understanding of the expression of IWC, and factors that influence its impact. This paper presents a series of workplace strategies that both enable the well-being and capabilities of employees who experience IWC, and ensure productive and diverse workplaces. Originality/value – The findings of this study advance understanding of the expression of IWC, and factors that influence its impact. This paper presents a series of workplace strategies that both enable the well-being and capabilities of employees who experience IWC, and ensure productive and diverse workplaces. ItemA Principled Approach to Research Conducted with Inuit, Métis and First Nations People: Promoting Engagement Inspired by the CIHR Guidelines for Health Research Involving Aboriginal People (2007-2010)(2019) Jull, Janet; King, Alexandra; King, Malcolm; Graham, I. D.; Morton Ninomiya, Melody; Jacklin, Kristen; Moody-Corbett, Penny; Moore, Julia E.Research to address the health burdens experienced by Indigenous populations is essential. In the Canadian context, the Truth and Reconciliation Commission of Canada determined that these health burdens are the result of policies that have undermined opportunities to address community-level health needs. The Canadian Institutes of Health Research Guidelines for Health Research Involving Aboriginal People (2007-2010), or “CIHR Guidelines,” were prepared in a national consultation process involving Inuit, Métis and First Nations communities, researchers and institutions. This article asserts that the principles espoused in the CIHR Guidelines hold ongoing potential to guide research with Indigenous people in ways that promote equitable research partnerships. We encourage those in research environments to engage with the spirit and content of the CIHR Guidelines.