Strengths, gaps, and future directions on the landscape of ethics-related research for spinal cord injury.

Spinal cord injury (SCI) affects between 250,000-500,000 people globally each year. While the medical aspects of SCI have received considerable attention in the academic literature, discourse pertaining to its ethical implications is more limited. The experience of SCI is shaped by intersecting demographic and identity factors such as gender, race, and culture that necessitate an intersectional and value-based approach to ethics-related research that is properly situated in context. Given this background, we conducted a content analysis of academic studies exploring the perspectives and priorities of individuals with SCI published in peer-reviewed journals in the decade between 2012-2021. Terms pertaining to SCI and ethics were combined in a search of two major publication databases. We documented overall publication patterns, recruitment and research methods, reporting of demographic variables, and ethics-related discourse. Seventy (70) papers met inclusion criteria and were categorized by their major foci. Findings reveal a gap in reporting of participant demographics, particularly with respect to race and ethnicity, geographic background, and household income. We discuss these person-centered themes and gaps that must be closed in the reporting and supporting of SCI research.

"Challenges and concerns faced by parents of a group of Egyptian children with cleft lip/palate: a qualitative study".

BACKGROUND: Cleft lip and palate are the most common developmental anomalies that affect the mouth and related structures. They can both affect children physiologically, socially, and functionally and lead to psychological distress in their parents. The present study aims to understand the challenges parents of cleft lip and palate patients face in Egypt, elucidate how they cope with these challenges, and assess their concerns for the future. METHODS: For the present phenomenological qualitative exploration, the parents of cleft lip and palate patients attending the cleft care clinic were invited to participate in the study through face-to-face recruitment at the clinic. An interview guide about the research question was developed to include standardized open-ended questions providing a framework for structured discussions. The interviews were audio-recorded after obtaining written informed consent from participants then collected data were transcribed for data analysis. RESULTS: Of the 12 participants, there were nine mothers and three fathers. Their children's ages ranged from 1.5 years to 19 years and had different presentations of cleft lip and palate from unilateral cleft lip to complete bilateral cleft lip and palate. Feeding difficulty was one of the main challenges encountered by the parents. At the same time, fear of being subjected to bullying was the main concern for the future of their children. Six themes were noted that were continually reported: Health & Wellbeing; Parental emotions; Parental attitudes & behaviors; Financial aspects; Relationship aspects; and Career/Education. CONCLUSIONS: There were 4 factors that directly impacted the themes, namely: the type of cleft, gender of the child, gender role of the parent, and the age of the child impacted the parental concerns and the challenges faced under the influence of sociocultural beliefs and existing support systems.

"Knowledge, clinical experience, and perceived need for training regarding molar-incisor hypomineralization among a group of Egyptian dental students: a cross-sectional study".

BACKGROUND: Molar-Incisor Hypomineralization (MIH) is a common oral health condition that can lead to difficulties and complications for both dental professionals and patients. It also has a negative impact on the oral health-related quality of life. The present study aimed to assess the knowledge, clinical experience, and perceived need for training of a group of Egyptian dental students regarding MIH. METHODS: Paper-based survey administration method was used to collect the responses of dental students regarding their knowledge, clinical experience, and perceived need for training about MIH. The survey consisted of two sections of questions regarding clinical features, etiological factors, prevalence, materials used in treating these teeth, factors affecting the choice of restorative materials, and their preferences regarding clinical training of MIH. Descriptive statistics was used for the data analysis by using SPSS® Statistics Version 26. RESULTS: About two-thirds of the respondents were familiar with MIH (69.2%). The vast majority of students (87.8%) had difficulty distinguishing MIH as a developmental defect that differs from other tooth conditions (p < 0.001); most commonly enamel hypoplasia. The most common defects seen by the respondents were yellow/brown opacities (59.1%). Nearly half of the students (45.2%) choose composite resin as the material of choice for the treatment of MIH-affected teeth with aesthetics being the most common factor affecting the selection of restorative material. Almost all students expressed their needs for further clinical training on MIH, especially on treatment aspects. CONCLUSIONS: Most students are familiar with MIH theoretically. However, there is an urgent need to include clinical training on MIH diagnosis in the practical sessions of pediatric dentistry courses.

Bridges of perspectives: representation of people with lived experience of spinal cord injury in editorial boards and peer review.

BACKGROUND: Diversity among editorial boards and in the peer review process maximizes the likelihood that the dissemination of reported results is both relevant and respectful to readers and end users. Past studies have examined diversity among editorial board members and reviewers for factors such as gender, geographic location, and race, but limited research has explored the representation of people with disabilities. Here, we sought to understand the landscape of inclusivity of people with lived experience of spinal cord injury specifically in journals publishing papers (2012-2022) on their quality of life. METHODS: An open and closed 12-question adaptive survey was disseminated to 31 journal editors over a one-month period beginning December 2022. RESULTS: We received 10 fully completed and 5 partially completed survey responses (response rate 48%). Notwithstanding the small sample, over 50% (8/15) of respondents indicated that their journal review practices involve people with lived experience of spinal cord injury, signaling positive even if incomplete inclusivity practices. The most notable reported barriers to achieving this goal related to identifying and recruiting people with lived experience to serve in the review and editorial process. CONCLUSIONS: In this study we found positive but incomplete trends toward inclusivity in journal practices involving people with lived experience of spinal cord injury. We recommend, therefore, that explicit and genuine efforts are directed toward recruitment through community-based channels. To improve representation even further, we suggest that editors and reviewers be offered the opportunity to self-identify as living with a disability without discrimination or bias.