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1.
J Transcult Nurs ; : 10436596241286230, 2024 Sep 29.
Artigo em Inglês | MEDLINE | ID: mdl-39342482

RESUMO

Introduction: Effective self-care for managing diabetes requires culturally sensitive and patient-centered education. This study explored the educational needs and priorities of people with diabetes (PWD) and healthcare providers (HCPs). Method: A mixed-methods approach was employed with participants from a university-affiliated hospital in South Korea. Descriptive and content analyses were used for the questionnaire and interview data. Results: Both PWD (n=33) and HCPs (n=42) ranked diabetes-related side-effect management and medication purpose as the most important aspects of diabetes education. PWD had higher educational needs regarding diagnosed diseases and lifestyle modifications than HCPs. Three themes were revealed: incorporating lifestyle changes and medication taking, collaborating with HCPs and caregivers and providing care to meet person-centered mental health needs, and enhancing education on disease and complications. Discussion: Culturally sensitive and patient-centered education programs that recognize communal values, reflect individual preferences and needs, and promote lifestyle changes by leveraging technologies for Korean PWD are crucial.

2.
J Food Prot ; 87(10): 100358, 2024 Sep 06.
Artigo em Inglês | MEDLINE | ID: mdl-39245347

RESUMO

Historically, low-moisture foods were considered to have minimal microbial risks. However, they have been linked to many high-profile multistate outbreaks and recalls in recent years, drawing research and extension attention to low-moisture food safety. Limited studies have assessed the food safety research and extension needs for the low-moisture food industry. The objectives of this needs assessment were to explore the food safety culture and education needs, identify the food safety challenges and data gaps, and understand the barriers to adopting food-safety-enhancing technologies in the U.S. low-moisture food industry. This needs assessment was composed of two studies. In Study 1, food safety experts from the low-moisture food industry upper management participated in online interviews and a debriefing discussion session. In Study 2, an online anonymous survey was disseminated to a different group of experts with experience in the low-moisture food industry. The qualitative data were analyzed using deductive and inductive coding approaches, while the quantitative data were analyzed via descriptive analysis. Twenty-five experts participated in the studies (Study 1: n = 12; Study 2: n = 13). Common commodities that participants had worked with included nuts and seeds, spices, flour, and dried fruits and vegetables. A food safety culture conceptual framework was adapted, which included three main components: infrastructure conditions (foundation), individual's food safety knowledge, attitudes, and risk perceptions; and organizational conditions (supporting pillars). Major barriers to establishing a positive food safety culture were identified to be limited resources, difficulties in risk communication, and difficulties in behavioral change. For continual improvement in food safety performance, two major themes of food safety challenges and data gaps were identified: cleaning, sanitation, and hygienic design; and pathogen reduction. Participants perceived the main barriers discouraging the low-moisture food industry from adopting food-safety-enhancing technologies were: (1) budgetary priorities, (2) operation constraints, (3) technology validation, (4) consumer acceptance, and (5) maintaining desired product characteristics such as quality and sensory functionality. The findings of this needs assessment provide guidance for the food industry, academia, and government agencies about the direction of future research and the development of targeted extension programs that might help improve food safety in the low-moisture food industry.

3.
Expert Rev Hematol ; 17(10): 741-748, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39252482

RESUMO

INTRODUCTION: Hemophilia A is managed with coagulation clotting factor VIII (FVIII) therapy that poses significant challenges, such as a high treatment burden, immunogenicity, inconsistent hemostatic cover, poor treatment outcomes, and musculoskeletal progression despite adequate prophylactic treatment. Various non-factor therapies, such as several natural anticoagulant inhibitors and factor FVIII mimetics, have been developed to address these unmet needs. However, the role of emicizumab in addressing these unmet needs remains underexplored. AREAS COVERED: This review delves into the evolution of hemophilia A replacement clotting therapy from plasma-derived products to recombinant products and, more recently, nonfactor therapies. It underscores the unmet needs of replacement therapy and explores the nonfactor therapies developed to address them. The review then comprehensively summarizes the clinical trial and real-world experience data, demonstrating how emicizumab tackles these unsatisfied demands. EXPERT OPINION: Replacement clotting factor therapies as the standard of care has exposed several needs that have yet to be addressed. However, data from numerous emicizumab clinical trials and real-world experience offer a promising outlook, suggesting that it may effectively address many unmet needs. As hemophilia treatment goals continue to evolve, the role of currently developed nonfactor therapies in hemophilia management is yet to be fully defined.


Assuntos
Anticorpos Biespecíficos , Anticorpos Monoclonais Humanizados , Fator VIII , Hemofilia A , Hemofilia A/tratamento farmacológico , Humanos , Anticorpos Monoclonais Humanizados/uso terapêutico , Anticorpos Biespecíficos/uso terapêutico , Fator VIII/uso terapêutico , Gerenciamento Clínico
4.
Health Promot Int ; 39(5)2024 Oct 01.
Artigo em Inglês | MEDLINE | ID: mdl-39284918

RESUMO

The growing financial burden of noncommunicable diseases (NCDs) in sub-Saharan Africa (SSA) hinders the attainment of the sustainable development goals. However, there has been no updated synthesis of evidence in this regard. Therefore, our study summarizes the current evidence in the literature and identifies the gaps. We systematically search relevant databases (PubMed, Scopus, ProQuest) between 2015 and 2023, focusing on empirical studies on NCDs and their financial burden indicators, namely, catastrophic health expenditure (CHE), impoverishment, coping strategies, crowding-out effects and unmet needs for financial reasons (UNFRs) in SSA. We examined the distribution of the indicators, their magnitudes, methodological approaches and the depth of analysis. The 71 included studies mostly came from single-country (n = 64), facility-based (n = 52) research in low-income (n = 22), lower-middle-income (n = 47) and upper-middle-income (n = 10) countries in SSA. Approximately 50% of the countries lacked studies (n = 25), with 46% coming from West Africa. Cancer, cardiovascular disease (CVD) and diabetes were the most commonly studied NCDs, with cancer and CVD causing the most financial burden. The review revealed methodological deficiencies related to lack of depth, equity analysis and robustness. CHE was high (up to 95.2%) in lower-middle-income countries but low in low-income and upper-middle-income countries. UNFR was almost 100% in both low-income and lower-middle-income countries. The use of extreme coping strategies was most common in low-income countries. There are no studies on crowding-out effect and pandemic-related UNFR. This study underscores the importance of expanded research that refines the methodological estimation of the financial burden of NCDs in SSA for equity implications and policy recommendations.


Assuntos
Efeitos Psicossociais da Doença , Gastos em Saúde , Doenças não Transmissíveis , Doenças não Transmissíveis/economia , Humanos , África Subsaariana , Gastos em Saúde/estatística & dados numéricos , Pobreza
5.
BMC Pediatr ; 24(1): 586, 2024 Sep 16.
Artigo em Inglês | MEDLINE | ID: mdl-39285335

RESUMO

BACKGROUND: Preterm birth is a process that fundamentally alters parental or caregiver roles, particularly in the early weeks of childbirth. Caregiver experiences can be distressing due to struggles with an unfamiliar and potentially threatening environment of the Neonatal Intensive Care Unit (NICU). These experiences can affect the development of parenting or caregiving roles to a greater extent. Supporting caregivers of preterm infants through education and information sharing can significantly improve neonatal outcomes. This study sought to explore the experiences of caregivers with hospitalized preterm infants regarding the education and information they received from healthcare workers on the care of preterm infants. METHOD: An exploratory descriptive qualitative study that explored caregivers' experiences with the management of preterm infants hospitalized at the Level III Neonatal Intensive Care Unit (NICU) of a tertiary level facility with an annual delivery of almost 7500 and a bed capacity of 26. The study utilized a deductive approach and a purposive sampling technique to recruit 16 caregivers who participated in an in-depth interview using a piloted semi-structured interview guide. The interviews were audio-recorded, transcribed, and analyzed using thematic analysis. FINDINGS: The study identified three major themes, which were (1) preterm infant feeding and keeping infants warm, (2) routine procedures and activities at the NICU, and (3) preparation towards homecare after discharge. Seven (7) sub-themes were generated. Caregivers were satisfied with the education and information they received on infant feeding and keeping the infant ward. They also had adequate education that prepared them for home care of the preterm infant. Caregivers did not receive timely information and education on the health status of their infants and the care processes of the NICU. They felt they were left out as they were not involved in decision-making. Regarding the care of the preterm infant. The inadequate flow of information and use of medical terminologies were a great source of worry and frustration for participants. The study showed that although the NICU staff were willing to offer health education to caregivers, information giving and education were not structured and hence did not address all the needs of the caregivers. CONCLUSION: Healthcare providers caring for preterm infants include caregiver education in their routine NICU activities and procedures. These processes start from the period of admission till discharge. Their education sessions primarily focus on breastfeeding, keeping the infant warm and adequate preparation of caregivers for preterm infant home care. This notwithstanding there are gaps in caregiver education and information on routine procedures in the NICU as well as information on the health needs of the infant. Participants are not fully involved in the decision-making processes and the use of medical terminologies compound caregivers' frustrations and anxieties. It is important to develop structured educational programs tailored to address the information needs faced by caregivers to ensure optimal health outcomes for their preterm infants.


Assuntos
Cuidadores , Recém-Nascido Prematuro , Unidades de Terapia Intensiva Neonatal , Pesquisa Qualitativa , Humanos , Recém-Nascido , Feminino , Cuidadores/educação , Cuidadores/psicologia , Masculino , Gana , Adulto , Centros de Atenção Terciária , Adulto Jovem
6.
Harm Reduct J ; 21(1): 174, 2024 Sep 20.
Artigo em Inglês | MEDLINE | ID: mdl-39300519

RESUMO

BACKGROUND: In the Northern Territory (NT) of Australia, there are significant evidence gaps about illicit drug use and harms, despite having established monitoring and reporting systems. This paper reports on illicit drug use, associated harms, contributing factors, service needs and priorities in the NT from the perspective and experiences of key stakeholders engaged in providing services for, or advocating on behalf of, people who use illicit drugs in the NT. METHODS: Face-to-face and online qualitative interviews were conducted with stakeholders across urban and remote locations in the NT. Key stakeholders were service providers, including acute and primary care clinicians, representatives of Aboriginal community controlled health organisations, lived experience advocates, peak body representatives and public health executives. Qualitative data were analysed thematically. RESULTS: Four researchers interviewed 21 participants across urban (62%), and remote areas (38%) of the NT. Themes identified were: (1) Illicit drug use and harms are diverse and distinct; (2) Client support needs are complex and influenced by co-morbidities, socio-demographic and cultural factors; (3) Priority population sub-groups need targeted strategies; (4) Local service strengths can be further developed and enhanced; (5) Local services need better resourcing; (6) Invest in progressive legislative and policy reforms; and (7) Improve routine monitoring and evaluation. CONCLUSIONS: Key stakeholders described illicit drug use, harms and contributing factors, which provided insights into the local challenges. Participants emphasised that clients have complex care needs, and further investment into targeted strategies are required to improve service engagement with priority groups. Service needs included greater understanding the role of dual diagnosis and its implementation and enhancing integrated and collaborative care in both primary health and acute care contexts. The voices of people with lived experience captured in this paper must inform local strategy and policy development relating to illicit drug use, in alignment with national strategy.


Assuntos
Redução do Dano , Transtornos Relacionados ao Uso de Substâncias , Humanos , Northern Territory/epidemiologia , Transtornos Relacionados ao Uso de Substâncias/epidemiologia , Feminino , Masculino , Uso Recreativo de Drogas , Participação dos Interessados , Adulto , Drogas Ilícitas , Pesquisa Qualitativa , Necessidades e Demandas de Serviços de Saúde
7.
Curr Med Res Opin ; : 1-11, 2024 Sep 09.
Artigo em Inglês | MEDLINE | ID: mdl-39250177

RESUMO

OBJECTIVE: HIV molecular epidemiology (HIV ME) is a tool that aims to improve HIV research, surveillance, and cluster detection and response. HIV ME is a core pillar of the U.S. initiative to End the HIV Epidemic but faces some challenges and criticisms from stakeholders. We sought to assess user experience to identify the current needs for HIV ME. METHODS: Users of HIV ME, including researchers and public health practitioners, were engaged via a structured survey. Needs were assessed via open-ended questions about HIV ME. Data were analyzed using reflexive thematic analysis; the concordance of results was assessed semi-quantitatively. RESULTS: Of 90 possible HIV-ME end-users, 57 completed the survey (response rate = 63%), which included users engaged in research (n = 29) and public health (n = 28). Respondents identified current imperatives, challenges, and strategies to improve HIV ME. Imperatives included characterization of the virus, identification of HIV hotspots, and tailoring of HIV interventions. Challenges encompassed technological issues, ethical concerns, and implementation difficulties. Strategies to improve HIV ME involved improving data access and analysis, enhancing implementation guidance and resources, and fostering community engagement and support. Researchers and public health practitioners prioritized different imperatives, but similarly emphasized the ethical concerns with HIV ME. CONCLUSION: The imperatives identified by users underscore the necessity of HIV ME, while the challenges highlight the hurdles to be overcome, including ethical concerns which emerged as a shared emphasis across user groups. The strategies outlined offer a roadmap for overcoming these challenges. These insights, drawn from user experience, present a valuable opportunity to inform the development of guidelines for the ethical application of HIV ME in research, surveillance, and cluster detection and response.

8.
Int J Equity Health ; 23(1): 190, 2024 Sep 23.
Artigo em Inglês | MEDLINE | ID: mdl-39313795

RESUMO

BACKGROUND: Access of all people to the healthcare they need, without financial hardship is the goal of Universal Health Coverage (UHC). As UHC initiatives expand, assessing the needs of vulnerable populations can reveal gaps in the system which may be covered by relevant policies. In this study we (i) identify the met and unmet primary healthcare needs of the poorest population of Khyber Pakhtunkhwa province (KP), Pakistan, and (ii) explore why the gaps exist. METHODS: We used Leveque's Framework of Patient-centred Access to Healthcare to examine unmet primary healthcare (PHC) needs and their underlying causes for the poorest population in four districts of Khyber Pakhtunkhwa province, Pakistan. Using a triangulation mixed methods design, we analysed data from a quantitative household survey of744 households, 17 focus group discussions with household members and, 11 interviews with healthcare providers. RESULTS: Our results show that indicate that despite service utilization, PHC needs were not met, primarily due to prohibitively high costs at each stage of access. Furthermore, gaps in outreach and information (approachability), and varying availability of medicines and diagnostics at facilities (appropriateness) the supply side as well as difficulties in navigating the system (inability to perceive) and adhering to prescriptions (inability to engage) on the demand side, also led to unmet PHC needs. Going beyond utilization, our findings highlight that engagement with care is an important determinant of met needs for vulnerable populations. CONCLUSION: Social health protection policies can contribute to advancing UHC for primary care. However, in our setting, enhancing communication and outreach, addressing gender and age disparities, and improving quality of care and health infrastructure are necessary to fully meet the needs of the poorest populations.


Assuntos
Acessibilidade aos Serviços de Saúde , Pobreza , Atenção Primária à Saúde , Humanos , Paquistão , Atenção Primária à Saúde/estatística & dados numéricos , Masculino , Feminino , Adulto , Acessibilidade aos Serviços de Saúde/normas , Pessoa de Meia-Idade , Adolescente , Grupos Focais , Adulto Jovem , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Criança , Pré-Escolar , Idoso , Inquéritos e Questionários , Lactente , Populações Vulneráveis
9.
Appl Neuropsychol Child ; : 1-13, 2024 Sep 25.
Artigo em Inglês | MEDLINE | ID: mdl-39319695

RESUMO

This study analyses Executive Functions (EF) and Creativity among neurodivergent students -including students with Attention Deficit Hyperactivity Disorder (ADHD), Dyslexia, Intellectual Disability (ID), Giftedness-, and a group with Neurotypical development. A sample of 181 secondary school students participated in the study. Creativity was assessed by using the PIC-J test, focusing on verbal and figural components of divergent thinking, while EF were evaluated through Nesplora Ice-Cream, a virtual reality tool assessing flexibility, working memory, and inhibition. Results showed statistically significant differences in Verbal Creativity, especially in Originality: students with ADHD outperformed their Neurotypical peers, while those with ID showed the lowest scores. Although no statistically significant differences emerged in Figural Creativity, students with ADHD showed the lowest scores in Elaboration or Figural details, whereas those with Dyslexia exhibited high levels of Figural Originality, similar to their Neurotypical peers. Concerning EF, students with ID had the highest scores in Interference and Perseveration, indicating poorer Flexibility. In contrast, Gifted students performed better than the other groups in Working Memory, while students with ADHD did not exhibit special difficulties in EF. These findings emphasize the importance of personalized interventions for Neurodivergent students, that recognize and capitalize on their unique strengths while addressing specific challenges.

10.
Int J Audiol ; : 1-10, 2024 Sep 25.
Artigo em Inglês | MEDLINE | ID: mdl-39320978

RESUMO

OBJECTIVE: To describe the application of the Behaviour Change Wheel (BCW) to the development of a family-centred intervention for families of children with hearing loss transitioning into early intervention. DESIGN: The BCW was used in a mixed methods design to understand the gaps in family-centred service provision and to identify appropriate intervention functions and implementation options to address these gaps. STUDY SAMPLE: Families and health professionals participated in different steps of the BCW. RESULTS: The qualitative interviews revealed that families required individualised information and support. The quantitative and interview data suggested inconsistencies in the provision of information and support to some families. It was determined that administration of a needs assessment by the support professionals was the most appropriate target behaviour to address this issue. In the analysis of the professionals' capabilities, opportunities, and motivations for administration of a needs assessment, a resource limitation was identified, and therefore, a Minimum Data Set for a Needs Assessment Tool was developed to facilitate the assessment of families' needs during the transition period. CONCLUSIONS: This study provided an example of how the BCW could be successfully applied to the design of a family-centred intervention for families of children with hearing loss.

11.
AORN J ; 120(4): 226-237, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39321127

RESUMO

Disruptive domestic and global events can directly affect health care workers' ability to deliver safe, quality care. Health care workers should have an awareness and understanding of the disaster continuum and how their actions throughout each phase can affect the crisis response. Robust, intentional education and training for all team members is essential to uphold safe clinical environments and delivery of high-quality care during crises. This article explores key elements of providing education during a crisis response, including launching a command center, forming a structured team with strong leadership, establishing organized communication channels, conducting educational needs assessments, and developing and implementing education plans to assist with mitigating any issues related to knowledge deficits. In addition, recommendations for evaluating the effectiveness of the education at producing the desired learning outcomes are provided, as well as the implications of such a program for perioperative educators, frontline staff members, and leaders.


Assuntos
Planejamento em Desastres , Humanos , Planejamento em Desastres/métodos , Segurança do Paciente/normas , Liderança , Enfermagem Perioperatória/educação , Equipe de Assistência ao Paciente/normas
12.
Health Soc Care Deliv Res ; 12(36): 1-108, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39324762

RESUMO

Background: Many children and young people in England provide support to family members who are disabled, have mental or physical ill health, or misuse drugs or alcohol. Providing care can negatively impact children and young people's education, employment, health and social participation, with associated costs. Support is needed to prevent and reduce these negative impacts. The study sought to provide new knowledge and address prior research gaps regarding how best to support young carers from their perspective and that of the people they care for. Objectives: To address the following questions: What types, components or features of services and other support are seen as helpful, valued, and acceptable to young people who look after someone at home and the people they support? Conversely, what is found to be less or unhelpful? What additional support is perceived as needed? What are the barriers experienced by young and young adult carers in seeking and accessing services for themselves or the person they support? What are the barriers and facilitators for practitioners in providing support and services perceived as valued, helpful and needed by young and young adult carers and the people they support? Design and setting: In-depth qualitative methodology using focus groups, in-depth semistructured interviews and workshops in four localities in England. Participants: One hundred and thirty-three carers aged 9-25 years with a range of caring and life circumstances and sociodemographic characteristics. Seventeen adult care recipients (parents) with a range of physical and/or mental healthcare and support needs. Nineteen practitioners from schools, colleges, young carers organisations, voluntary sector services, mental health services, the National Health Service, adult social care and local authority adult and children's social care commissioners. Results: The types and aspects of support that young carers and their families need, and value when received, include: support that reduces or removes their practical and emotional caring responsibilities; support to mitigate the negative impacts of care and help with other life issues; information and advice about services and wider resources and support; someone trusted available to talk to; greater awareness, recognition and understanding; and choice, flexibility, and co-development of plans and solutions. We found a great deal of unmet need for support, and variation in type and quality of support received, including geographically. Limitations: Potential limitations are that we were not able to engage with, or recruit, young carers from some intended subgroups, meaning some perspectives are missing. Partly because of COVID-19 measures during the study, we mainly recruited through young carers organisations and their family projects, although this was balanced by recruitment through schools and extensive outreach and engagement by the collaborating organisations prior to the project starting. Conclusions: Action is now needed to consistently and sustainably implement the types of support that young carers and the people they care for say they need and value. Future work: Future work should include more research from the perspectives of young carers and the people they care for, especially from particularly marginalised groups; and research to understand what works and how to improve implementation of the support needed and valued. Study registration: This study is registered as Current Controlled Trials ISRCTN13478876. https://doi.org/10.1186/ISRCTN13478876. 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: NIHR129645) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 36. See the NIHR Funding and Awards website for further award information.


Many children and young people in England provide support to family members who are disabled, have mental or physical ill health, or misuse drugs or alcohol. They are sometimes called young or young adult carers. Providing care often brings satisfaction and a sense of pride but can also have negative effects on young people's lives. The study aimed to find out their views about what would best support them and the people they care for. The study asked two important questions: (1) What are the difficulties faced by young carers and the people they support in seeking, accessing and receiving the right type of support at the right times? (2) What services and support do they find helpful, what support would they like, and what needs would it meet? To answer these questions, we held group discussions (focus groups) and in-depth interviews with 133 young carers with a range of caring and life circumstances and 17 parents receiving help from a young carer. We also held workshops with 19 practitioners who are involved in identifying, supporting and funding services for young carers and their families. They told us that the types of support that they and their families need, and value when received, include: support for the people they care for, so they are providing less practical and emotional care support to help with any negative impacts of providing care and with other life issues information and advice about services, wider resources and support someone trusted to talk to greater awareness, recognition and understanding choice, flexibility and working together to develop plans and solutions We found a great deal of unmet need for support, and variation in the type and quality of support received, including across geographical areas. Action is now needed to consistently and sustainably implement the types of support that young carers and their families say they need and value.


Assuntos
Cuidadores , Pesquisa Qualitativa , Apoio Social , Humanos , Cuidadores/psicologia , Adolescente , Inglaterra , Masculino , Feminino , Adulto Jovem , Criança , Grupos Focais , Acessibilidade aos Serviços de Saúde , Entrevistas como Assunto , Adulto
13.
JMIR Res Protoc ; 13: e58610, 2024 Sep 09.
Artigo em Inglês | MEDLINE | ID: mdl-39250211

RESUMO

BACKGROUND: There are more than 1.5 million children and young people in England with special educational needs (SEN), with over 160,000 young people in the United Kingdom attending a special school or alternative provision (AP) setting. Young people with SEN have been found to be at risk for poorer mental health and well-being than non-SEN peers. However, there is a range of both school-related and research challenges associated with identifying difficulties in a timely manner. OBJECTIVE: This Delphi study aims to determine a list of stakeholder priorities for improving school-based measurement of mental health and well-being among young people with SEN, at an aggregated level, within secondary special school or AP settings. A secondary objective is to inform the implementation of school-based well-being surveys, improve engagement in special schools or AP settings, and improve survey response rates among children and young people with SEN. METHODS: A mixed methods Delphi study will be conducted, including a scoping review and preliminary focus groups with school staff members and researchers to establish key issues. This will be followed by a 2-round Delphi survey to determine a list of stakeholder priorities for improving the measurement of mental health and well-being at an aggregate level within special schools and AP settings. A final stakeholder workshop will be held to discuss the findings. A list of recommendations will be drafted as a report for special schools and AP settings. RESULTS: The study has received ethical approval from the University College London Research Ethics Committee. The stage 1 scoping review has commenced. Recruitment for focus groups will begin in Autumn 2024. The first round of the Delphi survey will commence in early 2025, and the second round of the Delphi survey in the spring of 2025. The final workshop will commence in mid-2025 with final results expected in late 2025. CONCLUSIONS: There is a need for clear recommendations for special schools and AP settings on priorities for improving the measurement of mental health and well-being problems among young people with SEN. There is also a need for recommendations to researchers implementing school-based well-being surveys, including the #BeeWell program, to enable them to improve their engagement in special schools and AP settings and ensure surveys are accessible. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/58610.


Assuntos
Técnica Delphi , Saúde Mental , Humanos , Adolescente , Educação Inclusiva/métodos , Coleta de Dados/métodos , Instituições Acadêmicas , Feminino , Masculino , Criança
14.
Nurs Open ; 11(9): e70041, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39321208

RESUMO

AIM: To explore related support needs of general nurses in specialty mental health units and provide references for formulating a model to support this population working in mental health care units. DESIGN: An exploratory qualitative design. METHOD: In-depth individual unstructured interviews were performed with 15 general nurses who worked in mental health care units and were selected through purposive sampling. Data were collected through in-depth, individual, unstructured interviews. Data were analysed thematically using Tech's eight-step analysis method. RESULTS: Two themes with their subthemes were extracted. The two themes included (a) Needs for professional growth and (b) the Need for emotional support. CONCLUSION: Influenced by many factors, general nurses could not perform some nursing activities in mental health care units. Health managers should plan the training program to empower and provide emotional support to the general nurses in mental health care units. Further research is required to develop a model to facilitate the support of general nurses allocated to these units. REPORTING METHOD: This study follows the consolidated criteria for reporting qualitative research. PUBLIC CONTRIBUTION: A total of 15 general nurses participated in the study. We utilized their lunch time to conduct the interviews, significantly contributing to the article's content.


Assuntos
Pesquisa Qualitativa , Humanos , Feminino , Adulto , Masculino , Entrevistas como Assunto , Enfermeiras e Enfermeiros/psicologia , Atitude do Pessoal de Saúde , Enfermagem Psiquiátrica/educação , Pessoa de Meia-Idade
15.
J Genet Couns ; 2024 Sep 26.
Artigo em Inglês | MEDLINE | ID: mdl-39327410

RESUMO

Rare diseases (RDs), important for children and families, have been poorly studied in Turkey. This study aimed to describe the experiences and needs of mothers whose children have RDs from the perspectives of their mothers. In-depth interviews were held with the mothers of 16 children followed up in the Pediatric Nutrition and Metabolism Outpatient Clinic of a University Hospital. The data were analyzed using thematic analysis procedures. The experiences of mothers caring for children with RDs were categorized into three main themes: (1) challenges with treatment, (2) burden of care, and (3) expectations. This study demonstrated that mothers of children with RDs experienced many common challenges in caregiving.

16.
J Med Internet Res ; 26: e48257, 2024 Sep 12.
Artigo em Inglês | MEDLINE | ID: mdl-39265162

RESUMO

BACKGROUND: Health information consumers increasingly rely on question-and-answer (Q&A) communities to address their health concerns. However, the quality of questions posted significantly impacts the likelihood and relevance of received answers. OBJECTIVE: This study aims to improve our understanding of the quality of health questions within web-based Q&A communities. METHODS: We develop a novel framework for defining and measuring question quality within web-based health communities, incorporating content- and language-based variables. This framework leverages k-means clustering and establishes automated metrics to assess overall question quality. To validate our framework, we analyze questions related to kidney disease from expert-curated and community-based Q&A platforms. Expert evaluations confirm the validity of our quality construct, while regression analysis helps identify key variables. RESULTS: High-quality questions were more likely to include demographic and medical information than lower-quality questions (P<.001). In contrast, asking questions at the various stages of disease development was less likely to reflect high-quality questions (P<.001). Low-quality questions were generally shorter with lengthier sentences than high-quality questions (P<.01). CONCLUSIONS: Our findings empower consumers to formulate more effective health information questions, ultimately leading to better engagement and more valuable insights within web-based Q&A communities. Furthermore, our findings provide valuable insights for platform developers and moderators seeking to enhance the quality of user interactions and foster a more trustworthy and informative environment for health information exchange.


Assuntos
Informação de Saúde ao Consumidor , Humanos , Informação de Saúde ao Consumidor/normas , Idioma , Internet , Inquéritos e Questionários/normas
17.
Dev Neurorehabil ; 27(7): 228-234, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39235762

RESUMO

INTRODUCTION: To date, there are no caregiver-reported screening measures of oral behaviors related to feeding. The goal of this study was to develop such a measure. METHOD: Caregivers of 803 children referred to a feeding clinic and 188 comparison children reported their children's frequency of nine oral behaviors. These data were used to develop an Oral Behavior Screener (OBS). Both the psychometrics of the OBS and the relations between the OBS and child demographics were examined. RESULTS: As expected, the clinical sample demonstrated more deficits in oral behaviors than the comparison sample. We also found special needs status and age were linked to the OBS summary score. DISCUSSION: The OBS is a brief screener that can be used by clinicians to examine the need for further assessment, possible targets for intervention, oral behaviors often associated with feeding problems.


Assuntos
Cuidadores , Psicometria , Humanos , Feminino , Masculino , Pré-Escolar , Criança , Comportamento Alimentar , Lactente , Adolescente
18.
J Alzheimers Dis ; 101(3): 937-950, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39302372

RESUMO

Background: Alzheimer's disease and related dementias (ADRD) are progressive conditions. Family caregivers of patients, especially those caring for patients with ADRD exhibiting behavioral and psychological symptoms of dementia (BPSD), undergo significant physical and mental changes during long-term care. While most researchers have focused on the specific needs of family caregivers, the comprehensive understanding of these needs is limited. In this study, Alderfer's existence, relatedness, and growth theory was used to develop an interview framework to systematically and comprehensively understand the needs of family caregivers of individuals with ADRD. Objective: The objective of this study was to understand family caregivers' needs in coping with BPSD in individuals with ADRD, aiming to alleviate caregivers' stress and promote their overall well-being. Methods: This study used a hermeneutic-phenomenological interview research design. Data were collected via remote conferences involving interviews with 17 participants selected via maximum variation sampling. The Colaizzi seven-step method was utilized, and the interview contents were analyzed using NVivo 12.0 software. Results: The needs of family caregivers in coping with the BPSD of individuals with ADRD could be summarized into three themes, namely existence needs, relatedness needs, and growth needs, and 10 sub-themes. Conclusions: The study findings provide new insights into the needs of family caregivers in coping with patients exhibiting BPSD. Family caregivers experience significant negative emotions, poor caregiving experiences, heavy caregiving burdens, and a desire for professional assistance and policy support.


Assuntos
Adaptação Psicológica , Cuidadores , Demência , Humanos , Cuidadores/psicologia , Adaptação Psicológica/fisiologia , Feminino , Masculino , Demência/psicologia , Demência/enfermagem , Idoso , Pessoa de Meia-Idade , Hermenêutica , Estresse Psicológico/psicologia , Idoso de 80 Anos ou mais , Adulto , Família/psicologia
19.
Future Oncol ; : 1-14, 2024 Sep 27.
Artigo em Inglês | MEDLINE | ID: mdl-39329173

RESUMO

As the number of people with cancer increases, so does the number of informal caregivers. These caregivers frequently have multiple unmet needs and experience numerous burdens. Here we explore the crucial roles of these caregivers and categorize their unmet needs into four areas: information, relationship and communication, emotional support, and practical or financial needs. We provide evidence on emerging interventions aimed at supporting caregivers, including patient/caregiver assessments, education, collaborative care, financial assistance, wellness, informational programs, and an integrated caregiver clinic. Finally, we delve into the vital role that patient advocacy groups play in addressing the unmet needs of cancer patients and their caregivers by providing comprehensive support, including education, resources, counseling, guidance, and financial aid.


As the number of people living with cancer increases, the number of informal caregivers is also increasing. Most often, these caregivers are family members, friends, or spouses of the person with cancer. Caregivers of patients with cancer help with medical tasks and routine chores, like driving, and even personal care, such as bathing. Caregiving can be challenging, emotionally taxing, and time-consuming, all while being unpaid. In this review, we identify four unmet needs of caregivers of patients with cancer and examine how they are being addressed. First, caregivers need cancer care information that is presented in an understandable way. This will help the caregiver and the patient make better decisions about cancer care and treatment. Second, caregivers need better relationships and communication with the patient's clinicians. In addition, caregivers must also navigate, and sometimes mend, challenging relationships with the patients that they care for. Third, caregivers need more emotional support, including the option for counseling and therapy. Fourth, caregivers may need practical and financial support, particularly since the time demands and stress of caregiving can disrupt their ability to earn a living. Although many attempts have been made to address these caregiver needs, gaps still remain. Increasing awareness of information targeting caregivers and patients could reduce their uncertainty and help with decision-making. Even when resources are available, caregivers may not always be aware of or linked to them. Patient advocacy groups play a critical role in connecting caregivers with available resources. They also provide a variety of support services, including education, navigation, and financial assistance.

20.
BMC Psychol ; 12(1): 490, 2024 Sep 17.
Artigo em Inglês | MEDLINE | ID: mdl-39289726

RESUMO

The present research investigated the association between a series of motivational factors and burnout syndrome among elite skiers at the contextual level within the Hierarchical Model of Intrinsic and Extrinsic Motivation (HMIEM). There are 352 subjects (258 males, 94 females, aged 18 to 25 years) across five skiing events from three sport universities in this study. Four psychological scales related to motivational factors and burnout syndrome were completed by subjects. Overall, the result showed that a task-involving climate had a positive relationship with basic psychological needs, eliciting a positive pathway to autonomous motivation, and thus negatively affecting burnout syndromes. On the other hand, an ego-involving climate had a negative relationship with basic psychological needs, eliciting a negative pathway to amotivation, and then positively affecting burnout syndromes. The results underscore the intricate associations between a variety of motivational factors and athletes' burnout syndrome, supporting the need to incorporate burnout syndrome elements into the outcomes of HMIEM sequence.


Assuntos
Atletas , Motivação , Esqui , Humanos , Feminino , Masculino , Adulto , Adulto Jovem , Adolescente , Esqui/psicologia , Atletas/psicologia , Atletas/estatística & dados numéricos , Esgotamento Psicológico/psicologia , Esgotamento Profissional/psicologia
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