Active involvement of people with intellectual disabilities in health research – A structured literature review

Actively involving people with intellectual disabilities (ID) in health research, also known as inclusive health research, is increasingly popular. Currently, insight into experiences of this type of research is scarce. To gain insight into this topic, a structured literature review was conducted focussing on (1) existing theories, (2) inclusive methods, (3) added value and (4) barriers and facilitators. Literature published between January 2000 and January 2014 was included covering keywords related to ID and inclusive health research. Searches were performed in Pubmed, CINAHL, PsycINFO, EMBASE and MEDLINE databases, resulting in 26 included papers. Papers were quality assessed and analysed using qualitative data analysis software. Four theories were often simultaneously addressed: participatory research, emancipatory research, inclusive research and Arnstein's ladder. Barriers and facilitators could be divided into preparing, undertaking and finalising phases of research. Authors indicated that their motivation to conduct inclusive health research was based on demands by policy and funding bodies or was based on ethical considerations (i.e., ethical notions and giving people with ID a voice). Upon completion, authors perceived increased quality and validity of their research and several benefits for stakeholders (i.e., people with ID, researchers and healthcare professionals). Overall, there was consistency in their perception of the most important aspects of inclusive health research. Based on the analysis of included papers, four recommendations of inclusive health research with people with ID were found. Inclusive health research should be: (1) tailoring to the specific study; (2) anticipating all stakeholders; (3) considering its added value; and (4) providing insight into its process.     

Safety issues and concerns for the neurological patient in the emergency department

Introduction  Patient safety in our medical system has been an increasing national concern. Neurological patient safety in the emergency department (ED) has not been studied. The purpose of this article is thus to describe the issues relevant to neurological patient safety in the ED, review the current status of the literature, identify specific patient populations at risk, and suggest applicable solutions. Methods  Medline and PubMed literature review of key words associated with patient safety, neurological diseases, and EDs. Results  Little data can be found on overall neurological patient safety in the ED, however data for specific neurological emergencies including subarachnoid hemorrhage, stroke, status epilepticus, and head and spine trauma does exist and is reviewed. Conclusions  Limitations in ED education and access to neurological expertise may place some patients at risk. Recommendations for improving neurological patient safety in the EDs are suggested and include a discussion on barriers to implementation.     

Ankle torque steadiness and gait speed after a single session of robot therapy in individuals with chronic hemiparesis: a pilot study

Background: Anklebot therapy has proven to be effective in improving hemiparetic gait. However, neither ankle torque steadiness nor the relationship between changes in force control and functional tasks after therapy with Anklebot were described.

Objective: To assess whether a single session of robotic therapy promotes short-term ankle adaptations that influence ankle torque steadiness and walking speed in individuals with chronic hemiparesis.

Methods: A sample of participants who had residual hemiparesis deficits (hemiparesis group; n = 13) and age- and sex-matched healthy control participants (control group; n = 13). For sample characterization, balance, mobility, sensorimotor impairment, and daily living activities performance were measured.

Results: Differences in functional tests were identified only when the control and hemiparesis groups (F = 29.1; p = .001) were compared during the 10-metre Walking Test. Regarding the pre- and post-robotic assistance session, no significant difference was observed for any comparison (p > .05), except for the steadiness test, as demonstrated by the standard deviation (F = 7.10; p = .01) and coefficient of variation (F = 6.20; p = .02). The hemiparesis group showed better torque steadiness during dorsiflexion post-robotic assistance therapy (p ≥ 0.02) when compared with pre-robotic assessment. Correlations were identified between steadiness and walking speed variables.

Conclusion: People with chronic hemiparesis presented short-term performance gains in torque steadiness, especially during dorsiflexion, after a single robotic therapy session. The robotic therapy did not influence the walking speed, although low to moderate correlations between torque steadiness variables and walking speed were observed.     

娱乐康复对卒中后抑郁及神经功能缺损改善的疗效分析

目的 观察娱乐康复对卒中后抑郁及神经功能缺损改善的影响.方法 160例卒中后抑郁患者随机分为对照组和干预组,各80例.均采用常规治疗,干预组则在此基础之上给予娱乐康复.治疗前后分别采用Zung抑郁自评量表（SDS）、汉密尔顿抑郁量表（HAMD）、神经功能缺损程度评分标准（NFDS）、日常生活能力量表（ADL）进行评定.结果 干预前两组患者各项指标组间差异均无统计学意义（P＞0.05）,治疗3月后SDS、HAMD、NFDS、ADL评分较治疗前均明显改善（P＜0.05）,且干预组上述指标改善幅度均优于对照组,组间差异有统计学意义（P＜0.05）.结论 娱乐康复对改善卒中后抑郁及神经功能缺损效果显著.     

A dialog with five art materials: Creators share their art making experiences

Art materials constitute the basis for art therapy interventions. It is essential for therapists to be familiar with and cognizant of the qualities of the different materials they offer to clients and the potential responses the engagement with them may evoke. The purpose of the present research was to examine the responses to art materials by means of reflections written by 120 students after working with five different materials. A random sample of 30 reflections was collected for each material and analyzed by two judges. The analysis produced four main themes: the initial reactions of the participants before working with the material; their perceptions of and reactions to the material during their work with it, their attitudes toward the art products, and the childhood memories that emerged during their work. The findings highlight the importance of understanding the significance of interventions using different art materials in clinical settings.     

No pain, no gain: an exploratory within-subjects mixed-methods evaluation of the patient experience of sleep restriction therapy (SRT) for insomnia

Objective

To explore the patient experience of Sleep Restriction Therapy (SRT) for insomnia, with particular focus on elucidating possible side-effects, challenges to adherence and implementation and perceptions of benefit/impact.

Methods

To fully investigate the patient experience of sleep restriction therapy for insomnia we designed a within-subjects mixed-method study, employing sleep and daytime functioning questionnaires, assessments of sleep-restriction-related side-effects, prospective qualitative audio-diaries and post-treatment semi-structured interviews. University of Glasgow Sleep Centre. Eighteen patients with Primary Insomnia (mean age = 42; range 18–64). Patients took part in a 4-week brief sleep restriction intervention, involving two group sessions and two subsequent follow-up phone calls in the home environment.

Measurements and results

Sleep diaries and global measures of insomnia severity and sleep quality, as expected, demonstrated robust improvements at both post-treatment and 3-month follow-up (all large effect sizes). Daytime functioning/health-related quality of life variables similarly evidenced strong treatment effects (moderate to large effect sizes). Reported side-effects were common, with ?50% of patients reporting impairment in 8 out of 12 listed symptoms as a consequence of initiating treatment. The four most common side-effects were ‘fatigue/exhaustion’ (100%), ‘extreme sleepiness’ (94%), ‘reduced motivation/energy’ (89%) and ‘headache/migraine’ (72%) [Mean number of symptoms per patient = 7.2 (2.4); range 3–11]. Intriguingly, both side-effect frequency and ratings of side-effect interference were associated with baseline to post-treatment improvements in sleep quality. Qualitative real-time audio-diaries during week 1 of treatment and post-treatment interviews provided rich accounts of side-effects associated with acute SRT implementation; general challenges surrounding treatment implementation and adherence/non-adherence; and modifications to sleep parameters, daytime functioning and perceptions of sleep/sleep period.

Conclusions

This work has important implications for the delivery of SRT, particularly concerning awareness of possible ‘adverse events’ and likely implementation/adherence challenges. Findings also pave the way for testable hypotheses concerning possible mechanisms of action involved in sleep restriction treatment.     

Do memory aids help everyday memory? A controlled trial of a Memory Aids Service

There is a growing body of knowledge about the use of compensatory memory aids in memory rehabilitation, but relatively few controlled trials on how to train the use of such aids. This study investigated the effects of systematic training in the use of compensatory memory aids on everyday memory functioning within a Memory Aids Service. In a controlled clinical trial, a comparison was made between treatment participants and waiting list controls. Participants had everyday memory problems secondary to progressive or non-progressive neurological conditions. Following baseline assessment and goal setting, treatment participants underwent three training sessions, in which memory aids were matched to goals, across a six week period, with a follow-up assessment 12 weeks later. Outcome was measured by a goal attainment diary, neuropsychological test performance, psychosocial questionnaires and a problem solving inventory. There was a significant treatment effect of training on the goal attainment diary but only at 12 weeks follow-up. A post-hoc analysis indicated that treatment was effective for participants with a non-progressive condition but not for participants with a progressive condition. We conclude that a Memory Aids Service can be beneficial for patients with a non-progressive neurological condition, and make suggestions that might inform future applications of memory aids with those who have a progressive neurological disorder.