Making Public Involvement in Research More Inclusive of People With Complex Speech and Motor Disorders: The I-ASC Project.
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ABSTRACT:
SUBMITTER: Jayes M
PROVIDER: S-EPMC8182336 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:The concept of patient engagement in health research has received growing international recognition over recent years. Yet despite some critical advancements, we argue that the concept remains problematic as it negates the very real complexities and context of people's lives. Though patient engagement conceptually begins to disrupt the identity of "researcher," and complicate our assumptions and understandings around expertise and knowledge, it continues to essentialize the identity of "patient" as a homogenous group, denying the reality that individuals' economic, political, cultural, subjective and experiential lives intersect in intricate and multifarious ways.Patient engagement approaches that do not consider the simultaneous interactions between different social categories (e.g. race, ethnicity, Indigeneity, gender, class, sexuality, geography, age, ability, immigration status, religion) that make up social identity, as well as the impact of systems and processes of oppression and domination (e.g. racism, colonialism, classism, sexism, ableism, homophobia) exclude the involvement of individuals who often carry the greatest burden of illness - the very voices traditionally less heard in health research. We contend that in order to be a more inclusive and meaningful approach that does not simply reiterate existing health inequities, it is important to reconceptualize patient engagement through a health equity and social justice lens by incorporating a trauma-informed intersectional analysis. This article provides key concepts to the incorporation of a trauma-informed intersectional analysis and important questions to consider when developing a patient engagement strategy in health research training, practice and evaluation. In redefining the identity of both "patient" and "researcher," spaces and opportunities to resist and renegotiate power within the intersubjective relations can be recognized and addressed, in turn helping to build trust, transparency and resiliency - integral to the advancement of the science of patient engagement in health research.
| S-EPMC5547533 | biostudies-other
Project description:Motor imagery refers to the phenomenon of imagining performing an action without action execution. Motor imagery and motor execution are assumed to share a similar underlying neural system that involves primary motor cortex (M1). Previous studies have focused on motor imagery of manual actions, but articulatory motor imagery has not been investigated. In this study, transcranial magnetic stimulation (TMS) was used to elicit motor-evoked potentials (MEPs) from the articulatory muscles [orbicularis oris (OO)] as well as from hand muscles [first dorsal interosseous (FDI)]. Twenty participants were asked to execute or imagine performing a simple squeezing task involving a pair of tweezers, which was comparable across both effectors. MEPs were elicited at six time points (50, 150, 250, 350, 450, 550 ms post-stimulus) to track the time course of M1 involvement in both lip and hand tasks. The results showed increased MEP amplitudes for action execution compared to rest for both effectors at time points 350, 450 and 550 ms, but we found no evidence of increased cortical activation for motor imagery. The results indicate that motor imagery does not involve M1 for simple tasks for manual or articulatory muscles. The results have implications for models of mental imagery of simple articulatory gestures, in that no evidence is found for somatotopic activation of lip muscles in sub-phonemic contexts during motor imagery of such tasks, suggesting that motor simulation of relatively simple actions does not involve M1.
| S-EPMC6579859 | biostudies-literature
Project description:BackgroundUNderstanding Factors that explain Avoidable hospital admission Inequalities-Research study (UNFAIR) addresses how to reduce health inequalities, particularly for avoidable hospital admissions. Our Patient and Public Involvement and Engagement (PPIE) members broached that health inequalities are complex, challenging to understand and communicate. They identified a need to explore diverse views, including people who have a higher risk of health inequalities. With limited public-facing resources relating to the public's understanding or emotions around health inequalities, this project aimed to fill this gap using co-leadership and co-production.MethodsMembers of the public worked with researchers to co-produce and run PPIE workshops. This project was co-led by a member of the public and a researcher. One online workshop open to anyone in England accompanied by three face-to-face workshops were held. Public contributors, including people living in diverse communities, were invited. Inclusive involvement opportunities were offered including flexible ways of involvement and remuneration. To strengthen the key messages' rigour, transcriptions of the audio-recordings from each workshop, with facilitator notes, were analysed using thematic analysis. From the key messages, an animation was co-produced with public contributors with the public's voice being integral throughout.Key messagesA total of 58 people took part capturing intersecting and multiple dimensions of marginalisation including people with a range of ages, genders, ethnicities, socioeconomic backgrounds, and members of communities who face exclusion (including people with learning difficulties and experiencing ill-health). The animation highlighted powerful lived experience, for example, some people are dying earlier than expected. Health inequalities conjured up powerful emotions, such as anger and hopelessness. Public views of how to address health inequalities included respecting, accepting and valuing everyone, regardless of, for example, where people live. The animation is publicly available for use by anyone, including decision makers across the health and care system.ConclusionsThrough co-leadership and co-production, this project is an example of inclusive PPIE. This project provided a way for the public's voice to influence policy and practice to inform understanding and action to address health inequalities. The animation provides powerful insights into what health inequalities mean to people with examples of lived experience and corroborates the moral argument for action by decision makers.Patient and public contributionMembers of the public, including people who were affected or at higher risk of health inequalities, co-led this project and were involved as co-creators and developers from the inception of the project to completion. Their involvement was integral and documented in full throughout the project.
| S-EPMC10726063 | biostudies-literature
Project description:BackgroundRheuma Tolerance for Cure (RTCure) is a five-year international collaboration between academia, industry and patients/members of the public. It focuses on developing approaches to predict the onset of rheumatoid arthritis (RA) and designing clinical trials to reduce the risk of disease development through immune-tolerising and other treatments. We conducted a mid-term evaluation of patient and public involvement (PPI) within the project.MethodsTwo surveys on PPI were co-designed by the PPI Coordinator, Patient/Public Research Partners (PRPs) and a researcher. Both anonymous, electronic surveys were distributed to 61 researchers and 9 PRPs. Quantitative survey data were analysed using descriptive statistics and free text responses underwent inductive thematic analysis.ResultsResearcher and Patient response rates were 33% and 78%, respectively. Quantitative Researcher Survey data highlighted that (i) responding researchers represented all seven Work Packages (WPs), (ii) 40% thought PRPs had made a large or extremely large contribution to their own WPs, (iii) 55% thought PPI has had a moderate or large impact on RTCure, (iv) 75% worked with PRPs in RTCure, and (v) 60% said PRPs had affected their research thinking. Quantitative PRP Survey data highlighted that (i) PRPs were most involved in four WPs, (ii) 43% thought they had made a minor contribution to their main WP, (iii) 57% thought PPI has had a small impact on RTCure, and (iv) 57% thought they received too little feedback on the outcome of their contribution to different tasks. Four main themes were identified in both surveys: 'PRP contributions', 'Experiences of PPI', 'Impact of PPI on RTCure', and 'How PPI can be improved'. Two additional themes from the Researcher Survey were 'Impact of PPI on researchers' and 'Influence on Future Projects', and from the PRP Survey were 'Impact of PPI on PRPs' and 'Engagement with PRPs'.ConclusionPPI seemed to have a significant impact on RTCure, however, PRPs were less aware. A focus on improving communication between PRPs and researchers (facilitated by the PPI Coordinator), and providing PPI training for researchers is likely to improve involvement. Complex legal agreements for PRPs should be avoided and careful attention paid to appropriate PRP compensation.
| S-EPMC9588249 | biostudies-literature
Project description:Speaking is a sensorimotor behavior whose neural basis is difficult to study with single neuron resolution due to the scarcity of human intracortical measurements. We used electrode arrays to record from the motor cortex 'hand knob' in two people with tetraplegia, an area not previously implicated in speech. Neurons modulated during speaking and during non-speaking movements of the tongue, lips, and jaw. This challenges whether the conventional model of a 'motor homunculus' division by major body regions extends to the single-neuron scale. Spoken words and syllables could be decoded from single trials, demonstrating the potential of intracortical recordings for brain-computer interfaces to restore speech. Two neural population dynamics features previously reported for arm movements were also present during speaking: a component that was mostly invariant across initiating different words, followed by rotatory dynamics during speaking. This suggests that common neural dynamical motifs may underlie movement of arm and speech articulators.
| S-EPMC6954053 | biostudies-literature
Project description:This present study investigated the link between speech-in-speech perception capacities and four executive function components: response suppression, inhibitory control, switching and working memory. We constructed a cross-modal semantic priming paradigm using a written target word and a spoken prime word, implemented in one of two concurrent auditory sentences (cocktail party situation). The prime and target were semantically related or unrelated. Participants had to perform a lexical decision task on visual target words and simultaneously listen to only one of two pronounced sentences. The attention of the participant was manipulated: The prime was in the pronounced sentence listened to by the participant or in the ignored one. In addition, we evaluate the executive function abilities of participants (switching cost, inhibitory-control cost and response-suppression cost) and their working memory span. Correlation analyses were performed between the executive and priming measurements. Our results showed a significant interaction effect between attention and semantic priming. We observed a significant priming effect in the attended but not in the ignored condition. Only priming effects obtained in the ignored condition were significantly correlated with some of the executive measurements. However, no correlation between priming effects and working memory capacity was found. Overall, these results confirm, first, the role of attention for semantic priming effect and, second, the implication of executive functions in speech-in-noise understanding capacities.
| S-EPMC5510830 | biostudies-literature
Project description:BackgroundThe involvement of people with psychosocial disabilities in decision-making is a fundamental component of a person-centred and recovery-oriented model of care, but there has been little investigation of this approach in low- and middle-income countries. The aim of this study was to explore the involvement of people with schizophrenia in decision-making relating to their care in rural Ethiopia.MethodsA qualitative study was conducted in rural Ethiopia as part of the Rehabilitation Intervention for people with Schizophrenia in Ethiopia (RISE) project, involving two focus group discussions (n = 10) with community-based rehabilitation workers, and 18 in-depth interviews with people with schizophrenia, caregivers, health officers, supervisors and a community-based rehabilitation worker. Thematic analysis was used to examine major themes related to involvement in decision-making in this specific setting.ResultsInvolvement of people with schizophrenia in decision-making in this rural Ethiopian setting was limited and coercive practices were evident. People with schizophrenia tended to be consulted about their care only when they were considered clinically 'recovered'. Caregivers typically had a prominent role in decision-making, but they also acquiesced to the views of health care professionals. People with schizophrenia and caregivers were often unable to execute their desired choice due to inaccessible and unaffordable treatment.ConclusionsCommunity-based rehabilitation, as a model of care, may give opportunities for involvement of people with schizophrenia in decision-making. In order to increase involvement of people with schizophrenia in rural Ethiopia there needs to be greater empowerment of service users, wider availability of treatment choices and a facilitating policy environment. Further studies are needed to explore concepts of person-centred care and recovery across cultural settings.
| S-EPMC6103856 | biostudies-literature
Project description:OBJECTIVE:To explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories. DESIGN:A qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction. SETTING:Community settings and nursing homes in the Netherlands. PARTICIPANTS:19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers). RESULTS:The participants' responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare. CONCLUSION:Shared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period.
| S-EPMC5695519 | biostudies-literature
Project description:BackgroundThe UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer's disease (PwAD), are supported in making self-determined decisions. This support is achieved through communication. While content-related communication is a deficit of PwAD, relational aspects of communication are a resource. Research in supported decision-making (SDM) has investigated the effectiveness of different content-related support strategies for PwAD but has only succeeded in improving understanding, which, although one criterion of capacity to consent, is not sufficient to ensure overall capacity to consent. The aim of the 'spatial intervention study' of the DECIDE project is to examine an innovative resource-oriented SDM approach that focuses on relational aspects. We hypothesise that talking to PwAD in their familiar home setting (as opposed to a clinical setting) will reduce the complexity of the decision-making process and enhance overall capacity to consent.MethodsPeople with a suspected or confirmed diagnosis of dementia in Alzheimer's disease will be recruited from two memory clinics (N = 80). We will use a randomised crossover design to investigate the intervention effect of the decision-making place on capacity to consent. Besides reasoning capacity, which is part of overall capacity to consent and will be the primary outcome, various secondary outcomes (e.g., other aspects of capacity to consent, subjective task complexity, decisional conflict) and suspected moderating or mediating variables (e.g., meaning of home, demographic characteristics) will be assessed.DiscussionThe results of the study will be used to develop a new SDM strategy that is based on relational resources for PwAD. If a change in location achieves the anticipated improvement in capacity to consent, future research should focus on implementing this SDM strategy in a cost-effective manner in clinical practice.Trial registrationDRKS00030799 .
| S-EPMC10148477 | biostudies-literature
Project description:Evidence for the health benefits of a physically active lifestyle among older adults is strong, yet only a small proportion of older people meet physical activity recommendations. A synthesis of evidence identified "best bet" approaches, and this study sought guidance from end-user representatives and stakeholders to refine one of these, a peer-volunteering active aging intervention.Focus groups with 28 older adults and four professional volunteer managers were conducted. Semi-structured interviews were conducted with 9 older volunteers. Framework analysis was used to gauge participants' views on the ACE intervention.Motives for engaging in community groups and activities were almost entirely social. Barriers to participation were lack of someone to attend with, lack of confidence, fear of exclusion or "cliquiness" in established groups, bad weather, transport issues, inaccessibility of activities, ambivalence, and older adults being "set in their ways". Motives for volunteering included "something to do," avoiding loneliness, the need to feel needed, enjoyment, and altruism. Challenges included negative events between volunteer and recipient of volunteering support, childcare commitments, and high volunteering workload.Peer-volunteering approaches have great potential for promotion of active aging. The systematic multistakeholder approach adopted in this study led to important refinements of the original ACE intervention. The findings provide guidance for active aging community initiatives highlighting the importance of effective recruitment strategies and of tackling major barriers including lack of motivation, confidence, and readiness to change; transport issues; security concerns and cost; activity availability; and lack of social support.
| S-EPMC5946893 | biostudies-other