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Autism & Developmental Language... 2024Communicative and sensory differences are core autistic traits, yet speech-perception abilities and difficulties among autistic individuals remain poorly understood....
BACKGROUND & AIMS
Communicative and sensory differences are core autistic traits, yet speech-perception abilities and difficulties among autistic individuals remain poorly understood. Laboratory studies have produced mixed and inconclusive results, in part because of the lack of input from autistic individuals in defining the hypotheses and shaping the methods used in this field of research. Little in-depth qualitative research on autistic experiences of speech perception has been published, yet such research could form the basis for better laboratory research, for improved understanding of autistic experiences, and for the development of interventions. Existing qualitative research describes widespread autistic listening differences with significant impacts, but these results rely on data gathered via oral interviews in a small sample. The present study addresses these limitations and employs a mixed-methods approach to explore autistic listening experiences.
METHODS
We gathered survey data from 79 autistic individuals aged 18-55 without diagnosed hearing loss. The questionnaire included 20 closed-set questions on listening abilities and difficulties and three free-text questions on listening experiences. The free-text questions underwent deductive content analysis using a framework composed of themes from previous interview data on listening experiences (including auditory differences, contributing factors, impacts, and coping strategies). Concepts in the free-text data that were not part of the analysis framework were analyzed inductively.
RESULTS
In the closed-set data, participants reported listening difficulties in most specified environments, but complex background sounds and particularly background voices caused the most difficulty. Those who reported listening difficulties expressed having substantially greater difficulties than other people the same age. Participants indicated multiple impacts from listening difficulties, most prominently in their social lives. Concepts in the free-text data strongly supported previous interview data on listening differences and factors that affect listening ability, especially the diversity of types of listening difficulties. Consistent with the closed-set data, background-sound complexity and concurrent voices were especially troubling. Some concepts in the free-text data were novel, particularly difficulties with remote, broadcast, and recorded audio, prompting the creation of new themes.
CONCLUSIONS
Both forms of data indicate widespread listening differences-predominantly listening difficulties-affecting most autistic adults. Diverse types of listening difficulty are evident, potentially indicating heterogeneous underlying mechanisms, and complexity of background noise is consistently identified as an important factor. Listening difficulties are said to have substantial and varied impacts. Autistic adults are keen to share coping strategies, which are varied and usually self-devised.
IMPLICATIONS
Based on both the quantitative and qualitative results, we provide recommendations to improve future research and support the autistic community. The data-revealing types of listening difficulties can guide better quantitative research into underlying mechanisms. Such research should take into account potential heterogeneity in listening difficulties. Suggestions for optimized collection of self-report data are also offered. Additionally, our results could be used to improve societal understanding of autistic listening differences and to create beneficial interventions for and with autistic individuals. Moreover, given the willingness of the autistic community to share coping strategies, systematic collation of these strategies could form the basis for self-help and clinical guidance.
PubMed: 38283768
DOI: 10.1177/23969415241227074 -
Annual Review of Vision Science Sep 2023This narrative review summarizes the literature on factors related to eye care access and utilization in the United States. Using the Healthy People 2030 framework, this... (Review)
Review
This narrative review summarizes the literature on factors related to eye care access and utilization in the United States. Using the Healthy People 2030 framework, this review investigates social determinants of health associated with general and follow-up engagement, screenings, diagnostic visits, treatment, technology, and teleophthalmology. We provide hypotheses for these documented eye care disparities, featuring qualitative, patient-centered research. Lastly, we provide recommendations in the hopes of appropriately eliminating these disparities and reimagining eye care.
Topics: Humans; Ophthalmology; Telemedicine; Vision Disparity
PubMed: 37254050
DOI: 10.1146/annurev-vision-112122-020934 -
BMC Pregnancy and Childbirth Feb 2024A significant concern for Bangladesh is the high prevalence of adolescent pregnancy and the associated negative consequences for mother and baby, including a...
BACKGROUND
A significant concern for Bangladesh is the high prevalence of adolescent pregnancy and the associated negative consequences for mother and baby, including a teen-related increased risk of preterm birth (PTB). Bangladesh also has one of the highest incidences of PTB (19%). Despite these high numbers of adolescent pregnancies and PTB, little is reported about the experiences of adolescent mothers in caring for their preterm babies, and the interventions needed to support them. The aim of this study was to explore gaps and opportunities for improved care for preterm babies among adolescent mothers and communities in rural Bangladesh.
METHODS
We conducted a qualitative study in rural villages of Baliakandi sub-district of Bangladesh. Data collection involved in-depth interviews with adolescent mothers of premature and term babies, adult mothers with premature babies, and family members (n = 36); focus groups with community members (n = 5); and key informant interviews with healthcare providers (n = 13). Adolescent mothers with term and adult mothers with PTBs were included to elicit similarities and differences in understanding and care practices of PTB. A thematic approach was used for data analysis.
RESULTS
We explored two major themes- perceptions and understanding of PTB; care practices and care-seeking for illnesses. We observed gaps and variations in understanding of preterm birth (length of gestation, appearance, causes, problems faced) and care practices (thermal management, feeding, weight monitoring) among all, but particularly among adolescents. Immediate natal and marital-kins were prominent in the narratives of adolescents as sources of informational and instrumental support. The use of multiple providers and delays in care-seeking from trained providers for sick preterm babies was noted, often modulated by the perception of severity of illness, cost, convenience, and quality of services. Health systems challenges included lack of equipment and trained staff in facilities to provide special care to preterm babies.
CONCLUSION
A combination of factors including local knowledge, socio-cultural practices and health systems challenges influenced knowledge of, and care for, preterm babies among adolescent and adult mothers. Strategies to improve birth outcomes will require increased awareness among adolescents, women, and families about PTB and improvement in quality of PTB services at health facilities.
Topics: Pregnancy; Infant; Adult; Adolescent; Infant, Newborn; Female; Humans; Premature Birth; Adolescent Mothers; Bangladesh; Infant, Premature; Mothers; Perception
PubMed: 38368364
DOI: 10.1186/s12884-024-06345-x -
PloS One 2023Loss to follow-up (LTFU) is an unsuccessful treatment outcome for tuberculosis (TB) patients. In Malaysia, LTFU affects around 1 in 20 TB patients. Integration of...
BACKGROUND
Loss to follow-up (LTFU) is an unsuccessful treatment outcome for tuberculosis (TB) patients. In Malaysia, LTFU affects around 1 in 20 TB patients. Integration of qualitative research methods and evidence will provide a better understanding of LTFU and its underlying issues. In this study, we qualitatively explored TB patients' experiences in receiving treatment and their reasons for leaving TB care.
METHOD
In-depth interviews of 15 patients with a history of LTFU were conducted from January to September 2020. Interview guides were developed to explore TB patients' experiences while receiving treatment, including challenges faced and reasons for treatment interruption. Data were thematically analysed using the framework method.
RESULTS
We identified 11 emerging themes that occurred at four levels of interaction with TB patients. First, at the patient personal level, TB beliefs referring to patients' perception of illness and wellness, patients' perceived role of traditional and complementary medicine, and substance abuse were important. Second, the healthcare system and treatment factors that were highlighted included the organisation of care and treatment, interaction with healthcare professionals, particularly in communication and counselling, and TB medications' side effects. Third, structural factors including financial burden, logistical and transportation issues and work-related factors were identified to be barriers to treatment continuation. Fourth, the interpersonal level interaction of patients should not be neglected; this includes family relationships and support as well as peer influence.
CONCLUSION
Study findings put forth issues and challenges faced by TB patients while receiving treatment and underscore areas where actions can be taken. This will contribute to informing the development and implementation of future TB control strategies that are responsive to TB patients' needs and concerns, to effectively address LTFU and ensure better treatment completion rates among TB patients in Malaysia.
Topics: Humans; Malaysia; Lost to Follow-Up; Communication; Drug-Related Side Effects and Adverse Reactions; Financial Stress
PubMed: 37676902
DOI: 10.1371/journal.pone.0289222 -
PloS One 2023There are few studies that focus explicitly on the impact of the home environment on older adults' sedentary behaviour (SB) and physical activity (PA) using the...
BACKGROUND
There are few studies that focus explicitly on the impact of the home environment on older adults' sedentary behaviour (SB) and physical activity (PA) using the socio-ecological model (SEM). This study aims to investigate older adults' PA and SB within the home environment integrating the SEM as a theoretical framework.
METHODS
A qualitative exploratory research design was employed to conduct 33 in-depth interviews (IDIs) and five focus group (FGs; n = 16) with multi-diverse ethnic older adults (mean age 72±5 years). Using reflexive thematic analysis themes were generated from the data set and were interpreted using the SEM.
RESULTS
The findings indicate that different levels of the SEM had an impact on older adults' PA and SB. These include the 1) Individual level: Attitude, perception and motivation 2) Interpersonal level: Family and Friends: a motive to remain active 3) Organisational level: healthcare institutes, 4) Community level factors: Significance of social groups, 5) Physical Environment: Microenvironment and 6) Policy level factors (lockdown restrictions and healthcare system). This model can be utilised to foster activity within the home by focusing on the facilitators and barriers identified at each of these levels of influence.
CONCLUSION
The study findings suggest that modifying PA and SB in the home environment is complex and is influenced across different levels of the SEM. Therefore, a holistic approach is required that integrates these multiple influences. This understanding can inform the design of interventions that seek to optimize PA and minimize SB within the home environment.
Topics: Humans; Aged; Sedentary Behavior; Exercise; Focus Groups; Attitude; Motivation
PubMed: 37983222
DOI: 10.1371/journal.pone.0294715 -
Rheumatology and Therapy Oct 2023Within the EULAR recommendations, patient education (PE) is stated as the basis of the management of axial spondyloarthritis (axSpA). However, educational needs are...
INTRODUCTION
Within the EULAR recommendations, patient education (PE) is stated as the basis of the management of axial spondyloarthritis (axSpA). However, educational needs are scarcely qualitatively studied in axSpA. Therefore, we aimed to explore experiences and needs of PE in patients with axSpA.
METHODS
A phenomenological approach was used, with semi-structured in-depth interviews with patients with axSpA including broad variation in characteristics. Thematic analysis was applied. To enhance credibility, data saturation, research triangulation, peer debriefing, member checking, theoretical notes, and bracketing were performed.
RESULTS
Three interrelated themes regarding PE were identified from 20 interviews: illness perception, content, and 'availability'. Illness perception affects how patients experience and process PE, which consequently influences coping strategies. Prognosis, treatment, and coaching to self-management were identified as the most important content of PE. Regarding 'availability', face-to-face PE is preferred for exploring needs, supplemented by self-education, which can be freely applied. Additionally, sufficient time and a comprehensible amount of information were important and participants emphasized the need for axSpA-tailored information for relatives and friends. Participants reported a trusting patient-healthcare provider (HCP) relationship, and multidisciplinary and interdisciplinary attunement between HCPs as prerequisites for effective PE.
CONCLUSIONS
This first qualitative study exploring patients' experiences and needs of PE in axSpA revealed that prognosis, treatment, and coaching to self-management are important regarding content, and the combination of face-to-face contact and self-education the preferred modalities. It seems essential that patients' illness perceptions are taken into account for effective PE. These results add relevant insights for future PE guidelines in axSpA.
PubMed: 37523038
DOI: 10.1007/s40744-023-00585-7 -
Cortex; a Journal Devoted To the Study... Jun 2024Understanding the neural substrate of altered conscious states is an important cultural, scientific, and clinical endeavour. Although hypnosis causes strong shifts in...
Understanding the neural substrate of altered conscious states is an important cultural, scientific, and clinical endeavour. Although hypnosis causes strong shifts in conscious perception and cognition, it remains largely unclear how hypnosis affects information processing in cortical networks. Here we manipulated the depth of hypnotic states to study information processing between cortical regions involved in attention and awareness. We used high-density Electroencephalography (EEG) to record resting-state cortical activity from 30 hypnosis experts during two hypnotic states with different depth. Each participant entered a light and a deep hypnotic state as well as two well-matched control states. Bridging top-down and lateralisation models of hypnosis, we found that interhemispheric frontoparietal connectivity distinguished hypnosis and control conditions, while no difference was found between the two hypnotic states. Using a graph-theoretic measure, we revealed that the amount of information passing through individual nodes (measured via betweenness centrality) is reduced during hypnosis relative to control states. Finally, we found that theta power was enhanced during hypnosis. Our result contributes to the current discussion around a role for theta power in bringing about hypnotic states, as well as other altered conscious states. Overall, our findings support the notion that altered top-down control in frontoparietal regions facilitates hypnosis by integrating information between cortical hemispheres.
PubMed: 38865762
DOI: 10.1016/j.cortex.2024.05.008 -
PloS One 2023The article describes the results of the online survey on open science (OS) carried out on researchers affiliated with universities and Spanish research centres and...
The article describes the results of the online survey on open science (OS) carried out on researchers affiliated with universities and Spanish research centres and focused on open access to scientific publications, the publication process, the management of research data and the review of open articles. The main objective was to identify the perception and habits of researchers with regard to practices closely linked to open science and the scientific value added is that offers an in-depth picture of researchers as one of the main actors to whom this transformation and implementation of open science will fall. It focuses on the different aspects of OS: open access, open data, publication process and open review in order to identify habits and perceptions. This is to make possible an implementation of the OS movement. The survey was carried out among researchers who had published in the years 2020-2021, according to data obtained from WoS. It was emailed to a total of 8,188 researchers and obtained a total of 666 responses, of which 554 were complete, the rest being forms with some questions unanswered. The main results showed that open access still requires the diffusion of practices and services provided by the institution, as well as training (library or equivalent service) and institutional support from the competent authorities (vice rectors or equivalent) in specific aspects such as data management. In the case of data, around 50% of respondents stated they had stored data in a repository, and of all the options, the most frequently given was that of an institutional repository, followed by a discipline repository. Among the main reasons for doing this, we found transparency, visibility of data and the ability to validate results. For those who stated they had never stored data, the most frequent reasons for not having done so were privacy and confidentiality, the lack of a mandated data policy or a lack of knowledge of how to do it. In terms of open peer review, participants mentioned a certain reticence to the opening of evaluations due to potential conflicts of interest that may arise or because lower-quality content might be accepted in order to avoid conflicts. In addition, the hierarchical structure of senior researcher versus junior researcher might affect reviews. The main conclusions indicate a need for persuasion of OA to take place; APCs are an economic barrier rather than the main criterion for journal selection; OPR practices may seem innovative and emerging; scientific and evaluation policies seem to have a clear effect on the behaviour of researchers; researchers state that they share research data more for reasons of persuasion than out of obligation. Researchers do question the pathways or difficulties that may arise on a day-to-day basis and seem aware that we are undergoing change, where academic evaluation or policies related to open science, its implementation and habits among researchers may change. In this sense, more and better support is needed on the part of institutions and faculty support services.
Topics: Humans; Access to Information; Peer Review; Habits; Privacy
PubMed: 37440550
DOI: 10.1371/journal.pone.0288313 -
PLoS Computational Biology Jan 2024Naturally occurring collective motion is a fascinating phenomenon in which swarming individuals aggregate and coordinate their motion. Many theoretical models of...
Naturally occurring collective motion is a fascinating phenomenon in which swarming individuals aggregate and coordinate their motion. Many theoretical models of swarming assume idealized, perfect perceptual capabilities, and ignore the underlying perception processes, particularly for agents relying on visual perception. Specifically, biological vision in many swarming animals, such as locusts, utilizes monocular non-stereoscopic vision, which prevents perfect acquisition of distances and velocities. Moreover, swarming peers can visually occlude each other, further introducing estimation errors. In this study, we explore necessary conditions for the emergence of ordered collective motion under restricted conditions, using non-stereoscopic, monocular vision. We present a model of vision-based collective motion for locust-like agents: elongated shape, omni-directional visual sensor parallel to the horizontal plane, and lacking stereoscopic depth perception. The model addresses (i) the non-stereoscopic estimation of distance and velocity, (ii) the presence of occlusions in the visual field. We consider and compare three strategies that an agent may use to interpret partially-occluded visual information at the cost of the computational complexity required for the visual perception processes. Computer-simulated experiments conducted in various geometrical environments (toroidal, corridor, and ring-shaped arenas) demonstrate that the models can result in an ordered or near-ordered state. At the same time, they differ in the rate at which order is achieved. Moreover, the results are sensitive to the elongation of the agents. Experiments in geometrically constrained environments reveal differences between the models and elucidate possible tradeoffs in using them to control swarming agents. These suggest avenues for further study in biology and robotics.
Topics: Humans; Animals; Grasshoppers; Vision, Ocular; Models, Theoretical; Computer Simulation; Motion; Motion Perception; Depth Perception
PubMed: 38285716
DOI: 10.1371/journal.pcbi.1011796 -
Ethiopian Journal of Health Sciences Oct 2023Obstetric care has been at the center of both global and national agendas. More than 50% of pregnant mothers are still preferring to give birth at home with some even...
BACKGROUND
Obstetric care has been at the center of both global and national agendas. More than 50% of pregnant mothers are still preferring to give birth at home with some even after having full antenatal care. However, a few literatures looked at contributing factors for this problem but they are not conclusive and do not consider different sociocultural context of Ethiopia and different health service related barriers. Hence, the aim of this study was to explore barriers to obstetric care service utilization in Ethiopia using the socio-ecological model.
METHODS
Explorative qualitative study was employed involving key-informant interviews, in-depth interviews, and focus group discussions between October and December 2021; Individual, community, health system, and contextual barriers were explored. Atlas ti. Version 9 was used for analysis.
RESULT
Lack of awareness, unfavorable perception, lack of partner involvement, cultural barrier, shortage of supplies, poor infrastructure, provider-related factors, poor monitoring, and evaluation system, challenging topography, and conflict were the major barriers that hinder mothers from receiving obstetrics service in Ethiopia.
CONCLUSION
Lack of awareness, unfavorable perception, conflict, problems with health system structure and process, and cultural and geographical conditions were major barriers in Ethiopia. Therefore, packages of intervention is important to avail essential equipment, strengthening follow up system, create awareness, and increase access to health facilities is very important for service improvement by the government and non-governmental organizations. Additionally, implementing conflict resolution mechanism is important for addressing better obstetric service.
Topics: Humans; Female; Pregnancy; Maternal Health Services; Ethiopia; Prenatal Care; Qualitative Research; Mothers
PubMed: 38352664
DOI: 10.4314/ejhs.v33i2.4S