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1.
Nurse Educ Pract ; 78: 104015, 2024 Jun 03.
Article in English | MEDLINE | ID: mdl-38852273

ABSTRACT

BACKGROUND: The unfolding case-study learning approach is a growing modernized learning strategy implemented in different health disciplines. However, there is a lack of existing research that examines the effects of unfolding case studies in advanced nursing courses. AIM: To examine the impact of applying an unfolding case-study learning approach on critical care nursing students' knowledge, critical thinking, and self-efficacy. METHODS: This posttest-only, quasi-experimental study was conducted at XXX University in Palestine. A single-stage cluster sampling was used to assign nursing students enrolled in the critical care nursing course into experiment and conventional groups. The intervention group (n= 91) underwent unfolding case-study learning for selected cardiovascular topics, whereas the conventional group (n= 78) was taught using the traditional teaching methods. The posttest assessment was conducted using Knowledge Acquisition tests, Yoon`s Critical Thinking Disposition Instrument (YCTD), and the Self-Efficacy for Learning and Performance instruments. The Social Constructivist Theoretical Framework was integrated into the study. RESULTS: Homogeneity was achieved between both groups concerning Age, Gender, and GPA. The experiment group scored significantly higher than the conventional group regarding the posttest knowledge acquisition tests (7.12 vs. 5.49, respectively, t=-12.7, P<0.001, CI: -1.89 to -1.38), critical thinking (4.32 vs. 3.63 respectively, t=17.390, p<0.001, CI: -77 to -61) and self-efficacy (6.12 vs. 4.4 respectively, t=-30.897, p<0.001, CI: -1.82 to -1.60). Multivariate analysis revealed that 69 % of the variations of posttest scores were influenced by critical thinking scores (Adjusted R Squared=0.690, F=3.47, P=0002, η2=0.969). Similarly, self-efficacy has been shown to contribute by 74 % to the variations of scores after conducting the study program (Adjusted R Squared=0.743, F=4.21, P=0001, η2=0.974). However, the variations of both critical thinking and self-efficacy scores were not significantly influenced by the contribution of knowledge acquisition (p=0.772 and 0.857, respectively) and students' GPA (p=0.305 and 0.956, respectively). CONCLUSIONS: Irrespective of knowledge level and GPA, the unfolding case-study learning approach can enhance the critical thinking and self-efficacy of students enrolling in advanced nursing courses.

2.
Cureus ; 16(5): e60070, 2024 May.
Article in English | MEDLINE | ID: mdl-38860070

ABSTRACT

A 49-year-old woman with a complicated hernia presentation, including direct and indirect inguinal hernias, Spigelian hernias, and Pantaloon hernias, is presented in the case report. The diagnosis was verified by a comprehensive physical examination and imaging, which resulted in a Lichtenstein operation for repair. The surgical procedure for hernia comprised of painstaking dissection, reduction of the hernia sac, and implantation of a prosthetic mesh. The instance emphasizes the value of individualized treatment programs and draws attention to the intricate anatomical details of hernia surgery. Analyzing situations that are similar to one another highlights the necessity of customized strategies to improve patient outcomes.

3.
Front Pediatr ; 12: 1320106, 2024.
Article in English | MEDLINE | ID: mdl-38873582

ABSTRACT

Background: It has been estimated in recent studies that more than 1.5 million children worldwide lost a caregiver due to the COVID-19 pandemic. Childhood bereavement is associated with heightened risks of impaired academic and social performance, mental health issues, substance use disorders, and higher mortality rates. Yet children may receive insufficient support post-loss. Although the role of school psychologists in supporting grieving students has been examined, little is known about the role of teachers in this context. Specifically, knowledge about teachers' needs when supporting bereaved children is lacking. Objective: The study's aim was to explore teachers' needs, drawing upon a well-established framework-self-determination theory (SDT)-which focuses on three human needs considered essential for optimal functioning: autonomy, competence, and relatedness. Methods: Employing a qualitative approach, 36 teachers were interviewed about their needs when supporting grieving students. Interviews were transcribed and then analyzed using thematic content analysis. Results: Analysis revealed three SDT-related needs: knowledge (theory- and practice-related), acknowledgment, and support (emotional and practical). Conclusions: The findings enhance our theoretical understanding of childhood bereavement and may promote policy changes that ensure teachers' needs satisfaction. Its significance lies in the basic premise that supporting teachers' needs in the context of pediatric grief may eventually lead to their optimal ability to enact best practices for supporting grieving students' well-being.

4.
JMIR Med Educ ; 10: e51915, 2024 Jun 19.
Article in English | MEDLINE | ID: mdl-38904474

ABSTRACT

Background: Massive open online courses (MOOCs) are increasingly used to educate health care workers during public health emergencies. In early 2020, the World Health Organization (WHO) developed a series of MOOCs for COVID-19, introducing the disease and strategies to control its outbreak, with 6 courses specifically targeting health care workers as learners. In 2020, Stanford University also launched a MOOC designed to deliver accurate and timely education on COVID-19, equipping health care workers across the globe to provide health care safely and effectively to patients with the novel infectious disease. Although the use of MOOCs for just-in-time training has expanded during the pandemic, evidence is limited regarding the factors motivating health care workers to enroll in and complete courses, particularly in low-income countries (LICs) and lower-middle-income countries (LMICs). Objective: This study seeks to gain insights on the characteristics and motivations of learners turning to MOOCs for just-in-time training, to provide evidence that can better inform MOOC design to meet the needs of health care workers. We examine data from learners in 1 Stanford University and 6 WHO COVID-19 courses to identify (1) the characteristics of health care workers completing the courses and (2) the factors motivating them to enroll. Methods: We analyze (1) course registration data of the 49,098 health care workers who completed the 7 focal courses and (2) survey responses from 6272 course completers. The survey asked respondents to rank their motivations for enrollment and share feedback about their learning experience. We use descriptive statistics to compare responses by health care profession and by World Bank country income classification. Results: Health care workers completed the focal courses from all regions of the world, with nearly one-third (14,159/49,098, 28.84%) practicing in LICs and LMICs. Survey data revealed a diverse range of professional roles among the learners, including physicians (2171/6272, 34.61%); nurses (1599/6272, 25.49%); and other health care professionals such as allied health professionals, community health workers, paramedics, and pharmacists (2502/6272, 39.89%). Across all health care professions, the primary motivation to enroll was for personal learning to improve clinical practice. Continuing education credit was also an important motivator, particularly for nonphysicians and learners in LICs and LMICs. Course cost (3423/6272, 54.58%) and certification (4238/6272, 67.57%) were also important to a majority of learners. Conclusions: Our results demonstrate that a diverse range of health care professionals accessed MOOCs for just-in-time training during a public health emergency. Although all health care workers were motivated to improve their clinical practice, different factors were influential across professions and locations. These factors should be considered in MOOC design to meet the needs of health care workers, particularly those in lower-resource settings where alternative avenues for training may be limited.


Subject(s)
COVID-19 , Education, Distance , Health Personnel , Motivation , Humans , Health Personnel/education , Education, Distance/methods , COVID-19/epidemiology , Male , Female , Adult , Public Health/education , Pandemics , Emergencies
5.
Front Psychiatry ; 15: 1368722, 2024.
Article in English | MEDLINE | ID: mdl-38863603

ABSTRACT

Hikikomori (prolonged social withdrawal) has been discussed as a hidden worldwide epidemic and a significant social and healthcare issue. Social anxiety disorder is the most common psychiatric disorder preceding the onset of Hikikomori. Although studies exist suggesting the effectiveness of family-support interventions, little is known about psychotherapeutic approaches for Hikikomori individuals. Here, we present a case of Hikikomori wherein an internet-delivered cognitive therapy for social anxiety disorder (iCT-SAD) worked effectively in improving the client's social anxiety symptoms and social interaction behaviors. This case study demonstrates the principle that evidence-based psychological interventions focusing on social anxiety can be effective for clients with Hikikomori. Furthermore, the online mode of treatment delivery, along with a variety of relevant modules, may facilitate clients' engagement with treatment at home. The findings suggest that iCT-SAD might be a promising option for Hikikomori clients who have social anxiety problems, within the recommended stepped-intervention approach.

6.
BMC Nurs ; 23(1): 399, 2024 Jun 11.
Article in English | MEDLINE | ID: mdl-38862917

ABSTRACT

BACKGROUND: Graduate Entry Nursing (GEN) programmes have been introduced as another entry point to nurse registration. In the development of a new GEN programme, a problem-based approach to learning was used to develop critical thinking and clinical reasoning skills of motivated and academically capable students. OBJECTIVE: To explore and evaluate the design and delivery of course material delivered to GEN students embedded in authentic learning pedagogy from the perspectives of both GEN students and academic staff using an unfolding case study approach. METHODS: An educational design research approach was used to explore the learning experiences of GEN students using an unfolding case study approach situated in experiential pedagogy and the teaching experiences of the academics who designed it. Data were collected through semi-structured interviews with students once they had finished the course and weekly reflective diary recordings by academic staff throughout implementation. Thematic analysis was used to analyse the data. FINDINGS: Student reflections highlighted that this cohort had insight into how they learned and were comfortable voicing their needs to academic staff. While the unfolding case studies were not liked by all participants, for some it offered a unique learning opportunity; particularly when scaffolded with podcasts, simulation labs, tutorials and clinical placements. Staff reflections primarily aligned with student experiences. CONCLUSION: The gaps highlighted in the delivery of the course suggest that a blended pedagogical approach to graduate entry nurse education is required. Specifically, GEN students are aware of the learning needs and are happy to express these to academic staff, thus suggesting that engaging with a co-design curriculum approach will benefit future cohorts.

7.
BMC Nurs ; 23(1): 400, 2024 Jun 17.
Article in English | MEDLINE | ID: mdl-38886708

ABSTRACT

BACKGROUND: Education in nursing has noticed a positive effect of simulation-based education. There are many studies available on the effects of simulation-based education, but most of those involve a single institution, nonrandomized controlled trials, small sample sizes and subjective evaluations of the effects. The purpose of this multicenter randomized controlled trial was to evaluate the effects of high-fidelity simulation, computer-based simulation, high-fidelity simulation combined with computer-based simulation, and case study on undergraduate nursing students. METHODS: A total of 270 nursing students were recruited from five universities in China. Participants were randomly divided into four groups at each institution: the high-fidelity simulation group, the computer-based simulation group, the high-fidelity simulation combined with computer-based simulation group, and the case study group. Finally, 239 participants completed the intervention and evaluation, with 58, 67, 57, and 57 participants in each group. The data were collected at three stages: before the intervention, immediately after the intervention, and three months after the intervention. RESULTS: The demographic data and baseline evaluation indices did not significantly differ among the four groups. A statistically significant difference was not observed between the four methods for improving knowledge, interprofessional collaboration, critical thinking, caring, or interest in learning. While skill improvement differed significantly among the different groups after the intervention (p = 0.020), after three months, no difference was observed (p = 0.139). The improvement in skill in the computer-based simulation group was significantly lower at the end of the intervention than that in the high-fidelity simulation group (p = 0.048) or the high-fidelity simulation combined with computer-based simulation group (p = 0.020). CONCLUSIONS: Nursing students benefit equally from four methods in cultivating their knowledge, interprofessional collaboration, critical thinking, caring, and interest in learning both immediately and over time. High-fidelity simulation and high-fidelity simulation combined with computer-based simulation improve skill more effectively than computer-based simulation in the short term. Nursing educators can select the most suitable teaching method to achieve the intended learning outcomes depending on the specific circumstances. TRIAL REGISTRATION: This clinical trial was registered at the Chinese Clinical Trial Registry (clinical trial number: ChiCTR2400084880, date of the registration: 27/05/2024).

8.
Expert Rev Endocrinol Metab ; 19(4): 367-375, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38842362

ABSTRACT

INTRODUCTION: Acromegaly is a rare endocrine disorder usually caused by a benign growth hormone‒secreting pituitary adenoma. Surgical adenoma resection is typically the first line of treatment, and medical therapy is used for patients with persistent disease following surgery, for adenoma recurrence, or for patients ineligible for, or declining, surgery. Approved somatostatin receptor ligands (SRLs) have been limited to injectable options, until recently. Oral octreotide capsules (OOC) are the first approved oral SRL for patients with acromegaly. AREAS COVERED: We review published reports and provide case study examples demonstrating practical considerations on the use of OOC. Using two hypothetical case scenarios, we discuss current treatment patterns, breakthrough symptoms and quality of life (QoL), efficacy of SRLs, OOC dose titration, evaluation of OOC treatment response, and incidence and management of adverse events. EXPERT OPINION: OOC are an option for patients with acromegaly including those who experience breakthrough symptoms, who have preference for oral therapies, or other reasons for declining injectable SRLs. OOC have been associated with improved patient-reported QoL measures compared with those reported for lanreotide and octreotide. Continued real-world experience will determine whether OOC, alone or in combination with other therapies, provides further advantages over current injectable acromegaly treatments.


Subject(s)
Acromegaly , Antineoplastic Agents, Hormonal , Octreotide , Quality of Life , Humans , Acromegaly/drug therapy , Octreotide/administration & dosage , Octreotide/therapeutic use , Octreotide/adverse effects , Administration, Oral , Antineoplastic Agents, Hormonal/administration & dosage , Antineoplastic Agents, Hormonal/therapeutic use , Antineoplastic Agents, Hormonal/adverse effects , Capsules , Adenoma/drug therapy , Growth Hormone-Secreting Pituitary Adenoma/drug therapy , Clinical Trials as Topic , Treatment Outcome
9.
Article in English | MEDLINE | ID: mdl-38825392

ABSTRACT

ISSUE ADDRESSED: The Australian government's 'Closing the Gap' (CTG) strategy has been implemented via multiple strategies. We examined CTG policy in early childhood within Southern Adelaide during the first decade of implementation (2008-2018) and critiqued the complexity and challenges of policy that is designed to promote health and well-being of Aboriginal and Torres Strait Islander children but lacked Aboriginal control. METHODS: A qualitative case study was conducted in Southern Adelaide, and we interviewed 16 policy actors from health and early childhood education sectors. Thematic analysis revealed key themes to show how policy had been implemented through mainstream structures. RESULTS: The rapid roll out of the CTG strategy, the limitations of short-term funding, cuts to Aboriginal health services, tokenistic consultation, and the mainstreaming of service provision were key features of policy implementation. The influence of Aboriginal leaders varied across implementation contexts. Participants advocated for services in health and education that are culturally safe to improve health of children, families, and communities. CONCLUSIONS: The implementation of the CTG strategy in Southern Adelaide was rushed, complex, and lacking Aboriginal control. This contributed to the marginalisation of Aboriginal leaders, and disengagement of families and communities. A more collaborative and Aboriginal led process for policy implementation is essential to reform policy implementation and address health inequity. SO WHAT?: Findings from this study suggest that policy has continued to be implemented I ways that reflect colonial power imbalances. Alternative processes that promote the recognition of Indigenous rights must be considered if we are to achieve the targets set within the CTG strategy.

10.
Anal Bioanal Chem ; 2024 Jun 03.
Article in English | MEDLINE | ID: mdl-38829382

ABSTRACT

In this study, a molecular beacon (MB) was designed for colorimetric loop-mediated isothermal amplification (cLAMP). The length of complementary bases on the MB, guanine and cytosine content (GC content), and hybridization sites of complementary bases were investigated as key factors affecting the design of the MB. We designed MBs consisting of 10, 15, and 20 complementary bases located at both ends of the HRPzyme. In the case of the long dumbbell DNA structure amplified from the hlyA gene of Listeria monocytogenes, possessing a flat region (F1c-B1) of 61 base pairs (bp), an MB was designed to intercalate into the flat region between the F1c and B1 regions of the LAMP amplicons. In the case of the short dumbbell DNA structure amplified from the bcfD gene of Salmonella species possessing a flat region (F1c-B1) length of 6 bp, another MB was designed to intercalate into the LoopF or LoopB regions of the LAMP amplicons. The results revealed that the hybridization site of the MB on the LAMP amplicons was not crucial in designing the MB, but the GC content was an important factor. The highest hybridization efficiencies for LAMP amplicons were obtained from hlyA gene-specific and bcfD gene-specific MBs containing 20- and 15-base complementary sequences, respectively, which exhibited the highest GC content. Therefore, designing MBs with a high GC content is an effective solution to overcome the low hybridization efficiency of cLAMP assays. The results obtained can be used as primary data for designing MBs to improve cLAMP accessibility.

12.
JMIR Res Protoc ; 13: e52281, 2024 Jun 13.
Article in English | MEDLINE | ID: mdl-38869930

ABSTRACT

BACKGROUND: While the advantages of using the internet and social media for research recruitment are well documented, the evolving online environment also enhances motivations for misrepresentation to receive incentives or to "troll" research studies. Such fraudulent assaults can compromise data integrity, with substantial losses in project time; money; and especially for vulnerable populations, research trust. With the rapid advent of new technology and ever-evolving social media platforms, it has become easier for misrepresentation to occur within online data collection. This perpetuation can occur by bots or individuals with malintent, but careful planning can help aid in filtering out fraudulent data. OBJECTIVE: Using an example with urban American Indian and Alaska Native young women, this paper aims to describe PRIOR (Protocol for Increasing Data Integrity in Online Research), which is a 2-step integration protocol for combating fraudulent participation in online survey research. METHODS: From February 2019 to August 2020, we recruited participants for formative research preparatory to an online randomized control trial of a preconceptual health program. First, we described our initial protocol for preventing fraudulent participation, which proved to be unsuccessful. Then, we described modifications we made in May 2020 to improve the protocol performance and the creation of PRIOR. Changes included transferring data collection platforms, collecting embedded geospatial variables, enabling timing features within the screening survey, creating URL links for each method or platform of data collection, and manually confirming potentially eligible participants' identifying information. RESULTS: Before the implementation of PRIOR, the project experienced substantial fraudulent attempts at study enrollment, with less than 1% (n=6) of 1300 screened participants being identified as truly eligible. With the modified protocol, of the 461 individuals who completed a screening survey, 381 did not meet the eligibility criteria assessed on the survey. Of the 80 that did, 25 (31%) were identified as ineligible via PRIOR. A total of 55 (69%) were identified as eligible and verified in the protocol and were enrolled in the formative study. CONCLUSIONS: Fraudulent surveys compromise study integrity, validity of the data, and trust among participant populations. They also deplete scarce research resources including respondent compensation and personnel time. Our approach of PRIOR to prevent online misrepresentation in data was successful. This paper reviews key elements regarding fraudulent data participation in online research and demonstrates why enhanced protocols to prevent fraudulent data collection are crucial for building trust with vulnerable populations. TRIAL REGISTRATION: ClinicalTrials.gov NCT04376346; https://www.clinicaltrials.gov/study/NCT04376346. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52281.


Subject(s)
Alaska Natives , Humans , Female , Urban Population , Fraud/prevention & control , Internet , Indians, North American , Adolescent , Young Adult , American Indian or Alaska Native
13.
Behav Sci Law ; 2024 Jun 10.
Article in English | MEDLINE | ID: mdl-38857252

ABSTRACT

Stalking can be defined as a pattern of fixated, repeated, and unwanted behaviours. Stalking is not an isolated incident and was associated to sexual violence. While the relationship between sexual violence and stalking is scarcely explored, no studies have tested the relationship between stalking and sexual homicide, which both involves elements of obsession. The aim of this paper was to study the relationship between stalking and sexual homicide using an exploratory case study analysis of 7 males convicted for sexual homicide. Results revealed: (1) The presence of obsession prior to the homicide; (2) The victims were ex-intimate partners or acquaintances; (3) The victims were followed several times prior to the index offence; (4) Stalking elements were not always considered by the authorities, which has led to an escalation of behaviours. This study expands our understanding between stalking and sexual violence, supporting the design of prevention and treatments.

14.
J Aging Stud ; 69: 101235, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38834249

ABSTRACT

Having the choice to stay living in one's home and community for as long as possible is a desire of people living with dementia. Yet, for many, this is not a reality due to a lack of appropriate support, unsuitable housing and built environments, social exclusion, and stigma. The global movement called Dementia Friendly Communities aims to address such barriers and bring about positive change. At the local place-based level, Dementia Friendly Community initiatives are typically planned and implemented by committees, yet little is known about how they operate to enact Dementia Friendly Community principles. Using micro-ethnography and a case study approach, two Australian - Queensland Dementia Friendly Community committees and their activities were studied to better understand implementation at the local level. This involved 16 semi-structured interviews, participant observation and field notes identifying goals, approaches, and tensions. While both committees showed the capacity to raise awareness of issues impacting people living with dementia, there were substantial differences in the implementation of the key Dementia Friendly Community principle of inclusion of people living with dementia and carers. Key differences were the way people living with dementia were positioned and the part they were expected to play in committees, whether they were empowered and valued or tokenistically included yet not listened to. Three aspects of practice are central to more meaningful inclusion: engagement, power-sharing, and leadership. Local action groups directed and led by people living with dementia and their carers, with the support of key local people and organizations, help to progress Dementia Friendly Communities locally.


Subject(s)
Dementia , Humans , Queensland , Independent Living , Caregivers/psychology , Female , Male , Aged , Anthropology, Cultural
15.
J Hum Lact ; : 8903344241254342, 2024 Jun 05.
Article in English | MEDLINE | ID: mdl-38836434

ABSTRACT

INTRODUCTION: The benefits of human milk for preterm infants are well documented. Complex medical conditions can limit the extremely premature infant's ability to breastfeed and to receive human milk directly, yet these vulnerable infants may benefit most from receiving it. MAIN ISSUE: Extremely preterm infants are at risk for infections, digestive challenges, and chronic lung disease, and occasionally require a tracheostomy to facilitate weaning from mechanical ventilation. There is a risk of aspiration when orally feeding a child with a tracheostomy. This case study describes a tertiary neonatal team supporting a family's direct breastfeeding goal in an extremely premature infant with a diagnosis of bronchopulmonary dysplasia requiring a tracheostomy. MANAGEMENT: Initially, the infant participant (born at 24 weeks and 3 days of gestation, with a birthweight of 540 g) was gavage fed with human milk. The interdisciplinary team collaborated with the family to guide the infant's feeding goals, providing positive oral stimulation with soothers, oral immune therapy, and frequent skin-to-skin contact to prepare for future oral feeding. Within a month of the tracheotomy procedure, oral feeding was initiated, and direct breastfeeding with the tracheostomy tubing in place was achieved at 50 weeks and 1 day of age as a primary source of nutrition. CONCLUSION: The open dialogue between the family and healthcare team was the foundation for trialing direct breastfeeding for an extremely premature infant with a tracheostomy. While direct breastfeeding of full-term infants with tracheostomies has been previously described in the literature, this is the first case study of an extremely premature infant with a tracheostomy transitioning to direct breastfeeding.

16.
Genes (Basel) ; 15(5)2024 05 14.
Article in English | MEDLINE | ID: mdl-38790248

ABSTRACT

The case report by Mabry et al. (1970) of a family with four children with elevated tissue non-specific alkaline phosphatase, seizures and profound developmental disability, became the basis for phenotyping children with the features that became known as Mabry syndrome. Aside from improvements in the services available to patients and families, however, the diagnosis and treatment of this, and many other developmental disabilities, did not change significantly until the advent of massively parallel sequencing. As more patients with features of the Mabry syndrome were identified, exome and genome sequencing were used to identify the glycophosphatidylinositol (GPI) biosynthesis disorders (GPIBDs) as a group of congenital disorders of glycosylation (CDG). Biallelic variants of the phosphatidylinositol glycan (PIG) biosynthesis, type V (PIGV) gene identified in Mabry syndrome became evidence of the first in a phenotypic series that is numbered HPMRS1-6 in the order of discovery. HPMRS1 [MIM: 239300] is the phenotype resulting from inheritance of biallelic PIGV variants. Similarly, HPMRS2 (MIM 614749), HPMRS5 (MIM 616025) and HPMRS6 (MIM 616809) result from disruption of the PIGO, PIGW and PIGY genes expressed in the endoplasmic reticulum. By contrast, HPMRS3 (MIM 614207) and HPMRS4 (MIM 615716) result from disruption of post attachment to proteins PGAP2 (HPMRS3) and PGAP3 (HPMRS4). The GPI biosynthesis disorders (GPIBDs) are currently numbered GPIBD1-21. Working with Dr. Mabry, in 2020, we were able to use improved laboratory diagnostics to complete the molecular diagnosis of patients he had originally described in 1970. We identified biallelic variants of the PGAP2 gene in the first reported HPMRS patients. We discuss the longevity of the Mabry syndrome index patients in the context of the utility of pyridoxine treatment of seizures and evidence for putative glycolipid storage in patients with HPMRS3. From the perspective of the laboratory innovations made that enabled the identification of the HPMRS phenotype in Dr. Mabry's patients, the need for treatment innovations that will benefit patients and families affected by developmental disabilities is clear.


Subject(s)
Congenital Disorders of Glycosylation , Developmental Disabilities , Glycosylphosphatidylinositols , Humans , Developmental Disabilities/genetics , Glycosylphosphatidylinositols/genetics , Congenital Disorders of Glycosylation/genetics , Phenotype , Male , Mutation , Female , Membrane Proteins/genetics , Mannosyltransferases
17.
Int J Qual Health Care ; 36(2)2024 Jun 12.
Article in English | MEDLINE | ID: mdl-38804900

ABSTRACT

Substantial evidence indicates that leadership plays a critical role in an organization's success. Our study aims to conduct case studies on leadership attributes among China's five top-performing hospitals, examining their common practices. A semi-structured interview was conducted with 8 leaders, 39 managers, 19 doctors, and 16 nurses from the five sample hospitals in China. We collected information from these hospitals on the role of senior leadership, organizational governance, and social responsibility, aligning with the leadership assessment guidelines in the Baldrige Excellence Framework. Qualitative data underwent interpretation through content analysis, thematic analysis, and comparative analysis. This study adhered to the consolidated criteria for reporting qualitative research guidelines for reporting qualitative research. Our study revealed that the leaders of the five top-performing hospitals in China consistently established "Patient Needs First" as the core element of the hospital culture. Striving to build world-renowned hospitals with Chinese characteristics, the interviewees all believed strongly in scientific vigor, professionalism, and cooperative culture. The leaders adhered to a staff-centered approach, placing special emphasis on talent recruitment and development, creating a compensation system, and fostering a supportive environment conducive to enhancing medical knowledge, skills, and professional ethics. In terms of organizational governance, they continuously enhanced the communication between various departments and levels of staff, improved the quality and safety of medical care, and focused on innovative medical and scientific research, thereby establishing evidence-based, standardized hospital management with a feedback loop. Meanwhile, regarding social responsibility, they prioritized improvements in the quality of healthcare by providing international and domestic medical assistance, community outreach, and other programs. To a large extent, the excellent leadership of China's top-performing hospitals can be attributed to their commitment to a "Two-Pillared Hospital Culture," which prioritizes putting patient needs first and adopting a staff-centered approach. Furthermore, the leaders of these hospitals emphasize hospital performance, operations management, and social responsibility.


Subject(s)
Hospital Administration , Leadership , Organizational Culture , China , Humans , Hospital Administration/standards , Qualitative Research , Social Responsibility , Hospitals/standards , Interviews as Topic , Hospital Administrators
18.
Health Soc Care Deliv Res ; 12(13): 1-181, 2024 May.
Article in English | MEDLINE | ID: mdl-38767587

ABSTRACT

Background: The mental health of children/young people is a growing concern internationally. Numerous reports and reviews have consistently described United Kingdom children's mental health services as fragmented, variable, inaccessible and lacking an evidence base. Little is known about the effectiveness of, and implementation complexities associated with, service models for children/young people experiencing 'common' mental health problems like anxiety, depression, attention deficit hyperactivity disorder and self-harm. Aim: To develop a model for high-quality service design for children/young people experiencing common mental health problems by identifying available services, barriers and enablers to access, and the effectiveness, cost effectiveness and acceptability of such services. Design: Evidence syntheses with primary research, using a sequential, mixed-methods design. Inter-related scoping and integrative reviews were conducted alongside a map of relevant services across England and Wales, followed by a collective case study of English and Welsh services. Setting: Global (systematic reviews); England and Wales (service map; case study). Data sources: Literature reviews: relevant bibliographic databases and grey literature. Service map: online survey and offline desk research. Case study: 108 participants (41 children/young people, 26 parents, 41 staff) across nine case study sites. Methods: A single literature search informed both reviews. The service map was obtained from an online survey and internet searches. Case study sites were sampled from the service map; because of coronavirus disease 2019, case study data were collected remotely. 'Young co-researchers' assisted with case study data collection. The integrative review and case study data were synthesised using the 'weaving' approach of 'integration through narrative'. Results: A service model typology was derived from the scoping review. The integrative review found effectiveness evidence for collaborative care, outreach approaches, brief intervention services and the 'availability, responsiveness and continuity' framework. There was cost-effectiveness evidence only for collaborative care. No service model appeared to be more acceptable than others. The service map identified 154 English and Welsh services. Three themes emerged from the case study data: 'pathways to support'; 'service engagement'; and 'learning and understanding'. The integrative review and case study data were synthesised into a coproduced model of high-quality service provision for children/young people experiencing common mental health problems. Limitations: Defining 'service model' was a challenge. Some service initiatives were too new to have filtered through into the literature or service map. Coronavirus disease 2019 brought about a surge in remote/digital services which were under-represented in the literature. A dearth of relevant studies meant few cost-effectiveness conclusions could be drawn. Conclusions: There was no strong evidence to suggest any existing service model was better than another. Instead, we developed a coproduced, evidence-based model that incorporates the fundamental components necessary for high-quality children's mental health services and which has utility for policy, practice and research. Future work: Future work should focus on: the potential of our model to assist in designing, delivering and auditing children's mental health services; reasons for non-engagement in services; the cost effectiveness of different approaches in children's mental health; the advantages/disadvantages of digital/remote platforms in delivering services; understanding how and what the statutory sector might learn from the non-statutory sector regarding choice, personalisation and flexibility. Study registration: This study is registered as PROSPERO CRD42018106219. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 17/09/08) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 13. See the NIHR Funding and Awards website for further award information.


In this research study, we explored services for children and young people with 'common' mental health problems like depression, anxiety and self-harm. We aimed to find out what services exist, how children/young people and families find out about and access these services, what the services actually do, whether they are helpful and whether they offer value for money. We looked at the international literature (reports and research papers) to identify different approaches to providing support, and to find out whether certain approaches worked better than others and whether children/young people and families preferred some approaches over others. The literature provided very little information about the value for money of services. We also carried out a survey and used the internet to identify 154 relevant services in England and Wales. To explore services in more detail, and hear directly from those using them, we planned to visit 9 of the 154 services to interview children/young people, parents and staff. Unfortunately, coronavirus disease 2019 stopped us directly visiting the nine services and so we conducted phone and video interviews instead. We still managed to speak to, and hear the experiences of, more than 100 people (including children/young people and parents). We combined information from the literature with information from the interviews to create an evidence-based 'model' of what services should look like. This model considers some basic things like how quickly children/young people could access a service, what information was available, the importance of confidentiality and whether staff make the service fit with the child/young person's needs and interests. It also considers whether the service helps children/young people learn skills to manage their mental health and whether staff at a service work well together. We hope our model will help existing and new services improve what they offer to children/young people and families.


Subject(s)
Mental Disorders , Mental Health Services , Humans , Child , Adolescent , Mental Health Services/organization & administration , Mental Disorders/therapy , COVID-19/epidemiology , England , Wales , Cost-Benefit Analysis , Health Services Accessibility/organization & administration , Male , Female , Child Health Services/organization & administration , SARS-CoV-2
19.
Cureus ; 16(4): e58870, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38800160

ABSTRACT

Background Using an innovative framework of complexity and implementation science, with underpinning core values of appreciative inquiry (CIS-A), this paper describes the evaluation of a pilot service in New Zealand aiming to deliver integrated psychological therapy services within primary care, to young people (aged 18-24) experiencing mild to moderate mental distress. Method Using mixed quantitative and qualitative methods and multiple data sources, there was a strong focus on local innovation and co-design with service users, young people and multiple care providers. Data is drawn from service users, stakeholders and providers of the service in three areas of the lower North Island of New Zealand.  Results The Piki pilot provided a significant and innovative enhancement of mental health care to this population. The service supported 5307 individuals with a range of therapy options, with the majority having between one and three therapy sessions. From 730 service users who completed a survey, 591 (81%) were 'very satisfied' with the service provided. The CIS-A framework was used successfully to provide rapid feedback and encourage adaptation to evolving issues. These included unexpected workload pressures, changes to therapy delivery, the integration of co-design and prioritising the needs of vulnerable groups. There was a successful incorporation of youth/service user input to co-design the programme, introduction of a peer-to-peer support service, and integration of a digital resource platform. The framework was also used to address challenges encountered and to support necessary adaptations in response to the COVID-19 pandemic.  Conclusions We describe the use of an embedded evaluation to support and inform the implementation of a novel and innovative youth mental health programme. Complexity and implementation science, underpinned by the core values of appreciative inquiry (CIS-A), were successfully utilised providing potential learning that can be applied locally, nationally and internationally. This study has a focus on youth mental health but the principles and utility of applying a complexity and implementation science approach have application in many different health care settings. The use of a framework such as CIS-A can support complex innovation and implementation and can be used to enable rapid course correction and turn 'hindsight to foresight'.

20.
Explor Res Clin Soc Pharm ; 14: 100450, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38800618

ABSTRACT

Parkinson's disease (PD) is a progressive neurodegenerative disease which primarily presents with the core symptoms of rigidity, postural instability, tremor, and bradykinesia. Non-adherence to prescribed PD treatments can have significant ramifications, such as poor symptom control and greater disease burden. Reasons for poor adherence are multifaceted, particularly when medication regimens are complex and often based on perceptual and practical barriers. Additionally, engaging fully non-adherent patients in research is challenging since they may have dropped out of service provision, yet their contribution is vital to fully understand the rationale for non-adherence. This paper aims to present a case study on the perspectives of one person with PD, a participant in a previously published qualitative study investigating the barriers and facilitators to medication adherence in PD. In this paper, the participant's diagnostic journey is described, and experiences of medical consultations are summarised to explain their reasons for not adhering to any of the standard UK PD treatments prescribed. The participant's preferences for using Vitamin B1 (thiamine) injections to manage the symptoms are reported and the rationale for doing so is discussed. We consider the case through the lens of a behavioural science approach, drawing on health psychology theory, the Theoretical Domains Framework (TDF), to inform the review and the practical challenges faced when analysing the data for this participant. Implications for pharmacy practice, in particular, are also put forward with view to ensuring that patients such as Mr. Wilkinson are provided with the opportunity to discuss treatment choices and self-management of long-term conditions such as PD. We also discuss the importance of reaching under-represented members of the population in medication adherence research, which embraces the principles of equality, diversity, and inclusion in research.

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