Psychological and Neural Differences of Music Processing in Autistic Individuals: A Scoping Review

Despite abundant research and clinical evidence of the effectiveness of music interventions for people in the autism spectrum, understanding of music processing in this community is limited. We explored whether research evidence of differences in music processing within the autistic community is available. We developed a scoping review to search for literature with the terms “music”, “processing,” and “autism” (and variants). We searched PubMed, CINAHL, Scopus, Web of Science, PsycInfo, Academic Search Complete, ERIC, and Music Index databases for a total of 10,857 articles, with 5,236 duplicates. The remaining 5,621 titles and abstracts were screened for eligibility by a team of four undergraduate and graduate students and the PI. Seventy-five studies were included for data extraction. Data were analyzed with descriptive statistics regarding author, study, stimulus, and participant information, and a thematic analysis of outcome and findings. Our findings are preliminary given the emerging nature of the literature, the use of mostly non-musical auditory stimuli, passive listening experiences, and underreported demographics. However, the literature shows some evidence of differences in music processing for autistic individuals, including reduced habituation to non-musical and musical stimuli; truncated, delayed, or divergent developmental trajectories; and possible compensatory higher-order mechanisms that yield similar behavioral responses even in the presence of divergent neural correlates. Music therapists are encouraged to adopt a developmental perspective, not only of general skills, but specifically of music skill development in this community, and to extrapolate these findings with caution, given the current limitations in the evidence.

The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot)

Background Patient and public involvement (PPI) in research has increased steadily over the last two decades and is now both expected and appropriately resourced by many funding bodies, including the National Institute for Health Research (NIHR). However, PPI in research occurs in many different capacities and numerous frameworks exist for reporting or appraising patient involvement activities. The aim of this article is to describe processes involving PPI contributions to an NIHR-funded mixed-methods feasibility study (MoTaStim-Foot). Details of PPI advisors’ input, from initial identification and prioritisation of research ideas, to research delivery and dissemination, are discussed. Methods Extensive PPI for MoTaStim-Foot is reported, with consideration of Research Design Service (RDS) advice for PPI for research, involving identifying and prioritising: design; grant proposal development; undertaking/managing research; analysing and interpreting; dissemination; implementation; monitoring and evaluation. Two PPI workshops were undertaken; success in meeting UK standards for public involvement was audited against specific success criteria by two researchers, with discussion and consideration regarding how well our PPI achieved inclusive opportunities, working together, support and learning, governance, communications and impact. How PPI can be improved for future trials was also considered. Although the advantages of PPI for researchers were considered, the benefits for PPI advisors were also analysed. Results UK standards for public involvement were achieved, along with seven relevant research processes suggested by the RDS. PPI advisor contributions: informed study design; contributed to successful funding; enhanced trial delivery by informing participant information sheets and daily diaries; added value through undertaking note-taker roles in focus groups and helping to analyse focus group transcripts; and assisted in dissemination. However, benefits were mutual with PPI advisors reporting feeling valued and respected, a sense of pride with renewed confidence and purpose in life. Conclusions Importance and value of PPI, to researchers and patient advisors, have been highlighted, reinforcing the benefits of working in partnership with PPI advisors. Trial registration ISRCTN 13676183; Central Portfolio Management System ID 30449. Registered 02/01/2015, https://www.isrctn.com/ISRCTN13676183.

How to make study documents clear and relevant: the impact of patient involvement

Background Patient and public involvement can improve study outcomes, but little data have been collected on why this might be. We investigated the impact of the Feasibility and Support to Timely Recruitment for Research (FAST-R) service, made up of trained patients and carers who review research documents at the beginning of the research pipeline. Aims To investigate the impact of the FAST-R service, and to provide researchers with guidelines to improve study documents. Method A mixed-methods design assessing changes and suggestions in documents submitted to the FAST-R service from 2011 to 2020. Quantitative measures were readability, word count, jargon words before and after review, the effects over time and if changes were implemented. We also asked eight reviewers to blindly select a pre- or post-review participant information sheet as their preferred version. Reviewers’ comments were analysed qualitatively via thematic analysis. Results After review, documents were longer and contained less jargon, but did not improve readability. Jargon and the number of suggested changes increased over time. Participant information sheets had the most suggested changes. Reviewers wanted clarity, better presentation and felt that documents lacked key information such as remuneration, risks involved and data management. Six out of eight reviewers preferred the post-review participant information sheet. FAST-R reviewers provided jargon words and phrases with alternatives for researchers to use. Conclusions Longer documents are acceptable if they are clear, with jargon explained or substituted. The highlighted barriers to true informed consent are not decreasing, although this study has suggestions for improving research document accessibility.

Can we achieve better recruitment by providing better information? Meta-analysis of ‘studies within a trial’ (SWATs) of optimised participant information sheets

Background The information given to people considering taking part in a trial needs to be easy to understand if those people are to become, and then remain, trial participants. However, there is a tension between providing comprehensive information and providing information that is comprehensible. User-testing is one method of developing better participant information, and there is evidence that user-tested information is better at informing participants about key issues relating to trials. However, it is not clear if user-testing also leads to changes in the rates of recruitment in trials, compared to standard trial information. As part of a programme of research, we embedded ‘studies within a trial’ (SWATs) across multiple ongoing trials to see if user-tested materials led to better rates of recruitment. Methods Seven ‘host’ trials included a SWAT evaluation and randomised their participants to receive routine information sheets generated by the research teams, or information sheets optimised through user-testing. We collected data on trial recruitment and analysed the results across these trials using random effects meta-analysis, with the primary outcome defined as the proportion of participants randomised in a host trial following an invitation to take part. Results Six SWATs (n=27,805) provided data on recruitment. Optimised participant information sheets likely result in little or no difference in recruitment rates (7.2% versus 6.8%, pooled odds ratio = 1.03, 95% CI 0.90 to 1.19, p-value = 0.63, I2 = 0%). Conclusions Participant information sheets developed through user testing did not improve recruitment rates. The programme of work showed that co-ordinated testing of recruitment strategies using SWATs is feasible and can provide both definitive and timely evidence on the effectiveness of recruitment strategies. Trial registration Healthlines Depression (ISRCTN14172341) Healthlines CVD (ISRCTN27508731) CASPER (ISRCTN02202951) ISDR (ISRCTN87561257) ECLS (NCT01925625) REFORM (ISRCTN68240461) HeLP Diabetes (ISRCTN02123133)

Reshaping the review of consent so we might improve participant choice

Consent is one necessary foundation for ethical research and it’s one of the research ethics committee’s major roles to ensure that the consent process meets acceptable standards. Although on Oxford ‘A’ REC (an NHS Research Ethics Committee based in the UK) we’ve been impressed by the thought and work put into this aspect of research ethics, we’ve continued to have concerns about the suitability and effectiveness of consent processes in supporting decision making, particularly for clinical trials. There’s poor understanding of what people want to help them decide; current processes don’t provide the best grounding for informed consent and there’s inadequate public involvement. We’ve also found a lack of proportionality with researchers failing to adapt consent procedures in proportion to the burdens and consequences of the study. As a result, people are often not best helped to make an informed choice when asked to join a research study. To address these concerns, we considered how we might improve this aspect of research ethics review. Recognising the central importance of the dialogue between the volunteer and researcher, we’ve drawn up a model or flowchart of what we deem good consent practice, proposing consent should be built around four simple steps: Step 1: Introducing the study and the choices: helping the potential participants get an overview of the proposal and introducing the key issues. Step 2: Explaining all the details of the study using the detailed Participant Information Sheet. Step 3: After a gap, if necessary, reviewing and checking understanding. Step 4: Reaching agreement and recording consent. These steps, we believe, could help all involved and this article lays out ways we might improve participant choice while complying with accepted principles and current regulations.

A qualitative investigation of reasoning behind decisions to decline participation in a research intervention: A study-within-a-trial

The current study-within-a-trial explored individuals’ decisions to decline participation in research trialling a chronic illness-focused therapy (i.e. multiple sclerosis). Four themes were identified from seven semi-structured interviews with participation decliners and were confirmed by the host trial’s Patient & Public Involvement (PPI) panel: acknowledgement of the value of research; ‘fit’ of the study; misinterpretation of participant information; and ‘ignorance is bliss’ – discussed in light of theory and research. This study-within-a-trial extends research on trial recruitment and participation decline; while also suggesting that PPI can be utilised in both a practical and impactful manner.

Placebo and Side Effects Confound Clinical Trials on New Antitussives

This review discusses how the placebo effect related to treatment side effects may confound clinical trials on antitussives and specifically looks at the implications for trials on ATP antagonists. These new antitussives have distinctive side effects on the sensation of taste, and investigators have expressed concerns that this may unblind the clinical trials. Blinding is an essential component of trial design, but the degree of blinding in trials is rarely assessed. The assumptions of additivity and balance in clinical trials are discussed as important factors that allow assessment of the pharmacological activity of an antitussive. How side effects unbalance a clinical trial by amplifying the placebo effect of active treatments is discussed. The point is made that unblinding of trials invalidates any assessment of efficacy but that there is little interest or discussion about this fundamental aspect of trials. Proposals are discussed which may improve the blinding of trials and control placebo effects by changes to participant information, trial design, patient selection and use of active placebos. The issue of unblinding of clinical trials is not a new issue, but if real progress is to be made in developing new antitussives, then it is an issue that needs to be urgently addressed.

The effect of attitude towards work on professional commitment

Background: Professional commitment, which constitutes one of the criteria of the professionalisation process, is directly affected by attitude towards the work, constituting the content of nursing profession. Aim: This study was conducted to determine the effect of nurses’ attitudes towards work on their professional commitment. Methods: This study is a cross-sectional and analytical study. The data were collected from 293 nurses working at different units in a public hospital between April 2019 and May 2019. The data collection tool includes a 10-question participant information form, the Nurses’ Professional Commitment Scale and the Attitude Towards Work Scale. Variables were analysed using multiple linear regression. Results: The nurses obtained high scores from overall professional commitment and attitude towards work scales and their subscales. Significant differences were found in the scale total and its subscales caused especially by the variables of professional experience, position, income level and the status of willingly choosing the profession ( p < 0.05). Nursing professional commitment was predicted by ‘content of the work’, (β = 0.32, p < 0.01), ‘working conditions’ (β = 0.38, p < 0.01), ‘co-workers’ (β = 0.30, p < 0.01) and ‘compensation’ (β = 0.21, p < 0.01), which accounted for 25.6% of the variance in nursing professional commitment. Ethical considerations: Ethics committee approval and institutional permissions were obtained. The participants were informed about the study and written consent was obtained. Conclusions: The nurses who had an increasing duration of professional experience, were working in managerial position, found their income level sufficient and chose the profession willingly had higher professional commitment and attitudes towards work. In addition, a significant correlation was found between nurses’ professional commitment and their attitudes towards work, and nurses’ professional commitments were explained with their attitudes towards work. It is important to increase and strengthen the attitude towards work that affects nurses’ professional commitments.