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1.
Oncol Res ; 32(9): 1401-1406, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39220122

RESUMO

Objectives: Rural patients have poor cancer outcomes and clinical trial (CT) enrollment compared to urban patients due to attitudinal, awareness, and healthcare access differential. Knowledge of cancer survival disparities and CT enrollment is important for designing interventions and innovative approaches to address the stated barriers. The study explores the potential disparities in cancer survival rates and clinical trial enrollments in rural and urban breast and lung cancer patients. Our hypotheses are that for both cancer types, urban cancer patients will have longer 5-year survival rates and higher enrollment rates in clinical trials than those in rural counties. Methods: We compared breast and lung cancer patients' survival rates and enrollment ratios in clinical trials between rural (RUCC 4-9) and urban counties in Georgia at a Comprehensive Cancer Center (CCC). To assess these differences, we carried out a series of independent samples t-tests and Chi-Square tests. Results: The outcomes indicate comparable 5-year survival rates across rural and urban counties for breast and lung cancer patients, failing to substantiate our hypothesis. While clinical trial enrollment rates demonstrated a significant difference between breast and lung cancer patients at CCC, no significant variation was observed based on rural or urban classification. Conclusion: These findings underscore the need for further research into the representation of rural patients with diverse cancer types at CCC and other cancer centers. Further, the findings have considerable implications for the initiation of positive social change to improve CT participation and reduce cancer survival disparities.


Assuntos
Neoplasias da Mama , Ensaios Clínicos como Assunto , Neoplasias Pulmonares , População Rural , População Urbana , Humanos , Neoplasias Pulmonares/mortalidade , Neoplasias Pulmonares/terapia , Neoplasias da Mama/mortalidade , Neoplasias da Mama/terapia , Neoplasias da Mama/patologia , Feminino , Pessoa de Meia-Idade , Masculino , Taxa de Sobrevida , Georgia/epidemiologia , Idoso , Adulto , Disparidades em Assistência à Saúde
2.
Front Public Health ; 12: 1417857, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39220442

RESUMO

Aim: To measure the social participation of people in Saudi Arabia during the COVID-19 pandemic. Subject and methods: A cross-sectional survey was conducted among people in Saudi Arabia to measure their participation in social activities during the COVID-19 pandemic. A validated questionnaire of Social Participation Scale was used to collect data from five main regions in Saudi Arabia through social media platforms. Means, frequencies, and percentages were calculated through descriptive analysis. Mean scores and standard deviation of social participation of participants were also presented. Results: The total number of participants was 1,560 including Saudi (87.3%) and non-Saudi (12.7%) nationals. Most participants (60.2%) were female. The age of participants ranged between 16 and 24 years old. Around 62.1% of participants were married, 63.2% were educated, 48.4 were employed and 82% were from the Eastern region. Around 72% of participants earned <10,000 riyals per month compared to those (27.3%) who earned <5,000 riyals per month. A total 72.7% of the participants have been diagnosed by COVID-19. The mean score of social participation was 47.81 (SD = 0.27). Most participants (62.7%) reported that social participation was severely restricted. Around 68.2% of the participants were quarantined at the facilities. Conclusion: The social participation of people in Saudi Arabia had been severely restricted during the COVID-19 pandemic. An early assessment of people's social participation would help to identify their problems and needs, to help them improve their participation in social activities and thus increase their overall quality of life.


Assuntos
COVID-19 , Participação Social , Humanos , COVID-19/epidemiologia , Arábia Saudita/epidemiologia , Feminino , Masculino , Estudos Transversais , Adolescente , Adulto Jovem , Inquéritos e Questionários , Adulto , SARS-CoV-2 , Pessoa de Meia-Idade , Pandemias
3.
Front Public Health ; 12: 1456219, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39220453

RESUMO

Objective: To investigate the direct effect of extracurricular sports participation on subjective well-being among junior high school students, and the mediating role of emotion regulation and moderating role of physical education (PE) class participation. Methods: Using data from the Program for International Student Assessment (PISA), we analyzed the extracurricular sports participation, emotion regulation, subjective well-being, and PE class participation of 113,203 junior high school students. Results: After controlling for country, gender, and health status, extracurricular sports participation significantly predicts subjective well-being. Emotion regulation mediates the relationship between extracurricular sports participation and subjective well-being. Both the direct effect of extracurricular sports participation on subjective well-being and the mediating effect of emotion regulation are moderated by PE class participation. The effect is stronger among students with high PE class participation compared to those with low participation. Conclusion: There is a moderated mediation effect between extracurricular sports participation and subjective well-being among junior high school students. Emotion regulation mediates this relationship, while PE class participation enhances the impact of emotion regulation on subjective well-being.


Assuntos
Esportes , Estudantes , Humanos , Masculino , Feminino , Adolescente , Estudantes/psicologia , Esportes/psicologia , Educação Física e Treinamento , Instituições Acadêmicas , Inquéritos e Questionários , Regulação Emocional
4.
J Nutr Sci Vitaminol (Tokyo) ; 70(4): 344-351, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39218696

RESUMO

Dairy products formulated with bioactives are widely distributed in Japan, but it remains to be clear whether a regular consumption of these products would help reduce the risks of incidental functional disability and dementia in older adults. This study aimed to investigate Japanese subjects aged ≥65 y (n=629) that routinely consumed three functional dairy products, a calcium-enriched milk supplemented with Bifidobacterium longum BB536, a yogurt supplemented with lactoferrin, B. longum BB536 and heat-killed Lacticaseibacillus paracasei MCC1849, and a drinkable yogurt supplemented with lactoferrin, B. longum BB536 and heat-killed L. paracasei MCC1849, through a home delivery service. Intake frequency and intake duration of these functional dairy products were compared with the risk scores of incident functional disability and dementia, developed by the Japan Gerontological Evaluation Study. In the participants aged <75 y, the incident functional disability risk was significantly maintained or decreased in the participants with the long intake duration level compared with the short intake duration level (OR, 95% CI: 0.48, 0.25-0.93). In the participants aged ≥75 y, the dementia risk was significantly maintained or decreased in the participants with the high intake frequency level compared with the low intake frequency level (OR, 95% CI: 0.46, 0.22-0.95). A high intake frequency or long term duration of these functional dairy products may be effective in preventing an aging-related increase in the risks of incident functional disability and dementia in older adults, but this warrants further investigation using different products containing different bioactives.


Assuntos
Laticínios , Demência , Humanos , Idoso , Japão/epidemiologia , Demência/prevenção & controle , Demência/epidemiologia , Masculino , Feminino , Idoso de 80 Anos ou mais , Pessoas com Deficiência , Dieta/métodos , Suplementos Nutricionais , Iogurte , Envelhecimento , Fatores de Risco , Leite , Animais , Alimento Funcional , Probióticos/administração & dosagem , População do Leste Asiático
5.
J Hand Ther ; 2024 Aug 31.
Artigo em Inglês | MEDLINE | ID: mdl-39218760

RESUMO

BACKGROUND: Incorporating an occupation-based assessment along with or in place of an assessment of body functions and structures is not performed routinely in hand therapy practice. PURPOSE: (a) Explore correlations between body functions, activities and participation (A&P), and quality of life (QOL); (b) assess the extent to which personal factors and body functions contribute to variations in A&P and QOL; (c) compare the QOL of individuals with and without hand impairment (HI). STUDY DESIGN: Cross-sectional. METHODS: Seventy-seven patients (Mean age=43.70 SD=17.56; 47 males and 30 females) with chronic and acute hand impairment were recruited from two hand clinics and matched with healthy participants. Assessments were administered to participants in their first visit to the hand clinic. QOL was measured with the World Health Organization QOL questionnaire; A&P with the Disabilities of the Arm Shoulder and Hand (DASH) questionnaire; pain with the Patient-Rated Wrist/Hand Evaluation; hand function with The Functional Dexterity Test, Jamar Dynamometer and Pinch Gauge. RESULTS: Significant correlations were found between QOL and A&P, dexterity, and pain, as well as between A&P and hand strength and pain. Personal factors, hand function, and pain collectively explained 28.9% of QOL variance and 61.4% of A&P variance. Pain emerged as the sole significant contributor to QOL variance, while both hand function and pain significantly influenced A&P variance. Comparisons between the study group and controls highlighted significant differences in QOL domains, with the HI group reporting lower perceived QOL in physical, social, and environmental domains. CONCLUSION: The significance of adopting a comprehensive approach in HI intervention was highlighted. A complex interplay of factors across different levels of the International Classification of Functioning, Disability and Health (ICF) framework imply that clinicians should avoid fixating exclusively on isolated factors or specific domains.

6.
Public Health Nurs ; 2024 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-39221697

RESUMO

OBJECTIVE: This study aims to explore the relationship between Internet use and intrinsic capability among Chinese older adults, and the potential mediating role of social participation. METHODS: We verified the correlation between Internet use and intrinsic capacity using multiple linear regression and verified the mediating role of social participation using the Sobel and Bootstrap tests. RESULTS: The results of multiple linear regression show that there is a significant positive association between Internet use and intrinsic capacity (B = 0.717, p < .001); and social participation plays a mediating role, explaining a total of 20.5% of the association (indirect effect = 0.147, 95% CI: 0.067-0.227). CONCLUSION: Our findings suggest that Internet use significantly improves intrinsic capacity among Chinese older adults, with social participation playing a mediating role. Increasing Internet adoption rates and promoting social participation may help improve intrinsic capacity among older adults.

7.
BMJ Open ; 14(9): e087235, 2024 Sep 10.
Artigo em Inglês | MEDLINE | ID: mdl-39260850

RESUMO

OBJECTIVES: This study aims to describe the incidence, symptom clusters and determinants of post-acute COVID symptoms using data from the COVID RADAR app in the Netherlands. DESIGN: Prospective cohort. SETTING: General population in the Netherlands from April 2020 to February 2022. PARTICIPANTS: A total of 1478 COVID RADAR app users, with data spanning 40 days before to 100 days after positive SARS-CoV-2 test. OUTCOME MEASURES: Incidence and duration of 10 new symptoms that developed during acute infection, defined as 10 days prior and 10 days after positive test. Clustering of these post-acute COVID symptoms and associations between factors known in the acute phase and 100-day symptom persistence. RESULTS: The most frequent post-acute symptoms were cough, loss of smell or taste and fatigue. At 100 days postinfection, 86 (8%) participants still experienced symptoms. Three post-acute COVID symptom clusters were identified: non-respiratory (headache and fatigue; 49% of participants with post-acute COVID symptoms); olfactory (15%) and respiratory (8%). Vaccination was associated with a lower risk of post-acute COVID symptoms 100 days after infection, although CIs were wide (OR: 0.5; 95% CI: 0.2 to 1.5), but not with non-respiratory symptoms (OR: 1.0; 95% CI: 0.3 to 4.4). Severe acute disease increased the risk of post-acute COVID symptoms (OR: 1.4; 95% CI: 1.2 to 1.5; per additional acute symptom). CONCLUSIONS: In this cohort of infected community-dwelling app users, 5%-10% experienced post-acute COVID symptoms. The symptoms cluster in several distinct entities, which differ in incidence, patient characteristics and vaccination effects. This suggests multiple mechanisms underlying the development of post-acute COVID symptoms.


Assuntos
COVID-19 , Aplicativos Móveis , Síndrome de COVID-19 Pós-Aguda , SARS-CoV-2 , Humanos , COVID-19/epidemiologia , COVID-19/complicações , Feminino , Masculino , Incidência , Estudos Prospectivos , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Adulto , Vida Independente/estatística & dados numéricos , Idoso , Fadiga/epidemiologia , Fadiga/etiologia , Tosse/epidemiologia
8.
Artigo em Alemão | MEDLINE | ID: mdl-39261349

RESUMO

Loneliness is a relatively new topic in the field of health and social policy. A pivotal requirement for the formulation of effective policies addressing loneliness in Germany lies in the access to comprehensive, longitudinal data.In 2024, the first "Loneliness Barometer" was conducted by the Loneliness Network Germany (KNE) at the Institute for Social Work and Social Pedagogy e. V. (ISS e. V.) on behalf of the Federal Ministry for Family Affairs, Senior Citizens, Women and Youth (BMFSFJ). It is a report on the long-term development of loneliness within the German population (18 years and older), for which representative data from the German Socio-Economic Panel (SOEP, 1992-2021) were analysed. The loneliness barometer is also intended to provide evidence-based statements on the long-term development of loneliness burdens in Germany in the future.This article provides an insight into the decisions made in the development of the Loneliness Barometer methodology and presents selected key findings from the first Loneliness Barometer. Leveraging data from the German Socio-Economic Panel (SOEP), the Loneliness Barometer underscores the multifaceted disparities faced by individuals grappling with heightened loneliness levels. These disparities manifest across various domains: diminished health outcomes, constrained social and financial resources encompassing education and employment, reduced economic participation, curtailed political engagement and heightened scepticism towards democratic institutions. The article concludes with considerations of the limitations and future development possibilities of the Loneliness Barometer.

9.
Implement Sci ; 19(1): 63, 2024 Sep 11.
Artigo em Inglês | MEDLINE | ID: mdl-39261956

RESUMO

BACKGROUND: Co-design with consumers and healthcare professionals is widely used in applied health research. While this approach appears to be ethically the right thing to do, a rigorous evaluation of its process and impact is frequently missing. Evaluation of research co-design is important to identify areas of improvement in the methods and processes, as well as to determine whether research co-design leads to better outcomes. We aimed to build on current literature to develop a framework to assist researchers with the evaluation of co-design processes and impacts. METHODS: A multifaceted, iterative approach, including three steps, was undertaken to develop a Co-design Evaluation Framework: 1) A systematic overview of reviews; 2) Stakeholder panel meetings to discuss and debate findings from the overview of reviews and 3) Consensus meeting with stakeholder panel. The systematic overview of reviews included relevant papers published between 2000 and 2022. OVID (Medline, Embase, PsycINFO), EBSCOhost (Cinahl) and the Cochrane Database of Systematic reviews were searched for papers that reported co-design evaluation or outcomes in health research. Extracted data was inductively analysed and evaluation themes were identified. Review findings were presented to a stakeholder panel, including consumers, healthcare professionals and researchers, to interpret and critique. A consensus meeting, including a nominal group technique, was applied to agree upon the Co-design Evaluation Framework. RESULTS: A total of 51 reviews were included in the systematic overview of reviews. Fifteen evaluation themes were identified and grouped into the following seven clusters: People (within co-design group), group processes, research processes, co-design context, people (outside co-design group), system and sustainment. If evaluation methods were mentioned, they mainly included qualitative data, informal consumer feedback and researchers' reflections. The Co-Design Evaluation Framework used a tree metaphor to represent the processes and people in the co-design group (below-ground), underpinning system- and people-level outcomes beyond the co-design group (above-ground). To evaluate research co-design, researchers may wish to consider any or all components in the tree. CONCLUSIONS: The Co-Design Evaluation Framework has been collaboratively developed with various stakeholders to be used prospectively (planning for evaluation), concurrently (making adjustments during the co-design process) and retrospectively (reviewing past co-design efforts to inform future activities).


Assuntos
Projetos de Pesquisa , Humanos , Participação dos Interessados , Pesquisa sobre Serviços de Saúde/organização & administração , Revisões Sistemáticas como Assunto , Pessoal de Saúde
10.
Contemp Clin Trials Commun ; 41: 101353, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39252860

RESUMO

Background: To explore the association between ethnicity, as a proxy for language, and participation in clinical trials (CT) conducted by Principal Investigators (PI) who speak one or more language in addition to English. Methods: This retrospective, descriptive study utilized CT participant demographic data extracted from the largest Midwestern non-profit healthcare system between January 1, 2019 and 12/31/2021. The CT participant sample (N = 4308) was divided for comparison: CT Participants of Hispanic or Latino Origin (N = 254; 5.90 %) and CT Participants of Non-Hispanic or Latino Origin (N = 4054; 94.10 %). Logistic regressions were performed to generate the crude and adjusted odds of patients of Hispanic or Latino origin participating in CTs conducted by PIs who speak another language in addition to English. Results: Crude analysis revealed that patients of Hispanic or Latino ethnicity had 2.04 (1.58, 2.64) times greater odds of participating in CTs conducted by PIs who speak another language than English (<0.0001), which increased to 2.67 (1.97, 3.62) times greater odds after adjusting for sex, race, age and insurance (p < 0.0001). Conclusions: Overall findings indicate that patients of Hispanic or Latino ethnicity, who are more likely to speak Spanish, have greater odds of participating in CTs conducted by PIs who speak another language beyond English. This may imply that cultural sensitivity at the top of a CT study team, as likely to be demonstrated by PIs who speak another language beyond English, may be an important contributor to reducing ethnicity- and language-based barriers to diversity in CTs and a relationship worth exploring further.

11.
Front Public Health ; 12: 1437502, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39253288

RESUMO

Introduction: Community Advisory Boards (CABs) play an important role in developing and delivering patient-centered care. However, the impact of participation on CAB members has not been well studied, particularly on the global scale. In 2022, the Hepatitis B Foundation (HBF) convened the first global hepatitis B and hepatitis delta CAB with 23 members from 17 countries, representing six out of the seven World Health Organization (WHO) regions, and countries with the largest hepatitis B and hepatitis delta disease burden. Methods: To reflect on the process of assembling an effective and motivated CAB and assess the impact on CAB participants, three virtual focus group sessions were held with 16 participants in July and August 2023. Sessions were recorded and transcribed. Questions focused on motivations for joining the CAB, membership experiences, and lessons learned. Grounded theory analysis was used to generate hypotheses about reasons for CAB members' participation, as well as challenges and suggestions. Qualitative analysis using inductive reasoning identified key themes within responses. Transcripts were independently analyzed by a primary and secondary coder. Results: Motivations for joining the CAB included participants' desire to advocate for people living with hepatitis B and hepatitis delta, and other altruistic factors. Participants reflected that through CAB membership, they gained networking and advocacy opportunities and enhanced their hepatitis B- and hepatitis delta-related knowledge. Challenges participants experienced were related to time, physical limitations, and stigma. Finally, participants discussed their limited direct engagement with drug developers and proposed ways the CAB can increase interactions with stakeholders going forward. Discussion: Based on participants' assessments, establishing a global CAB for stigmatized infectious diseases is worth the effort. Regular internal review of community advisory boards' structure and performance is critical to ensure the CAB is fulfilling its mission.


Assuntos
Comitês Consultivos , Grupos Focais , Saúde Global , Hepatite B , Humanos , Masculino , Feminino , Participação da Comunidade , Adulto , Organização Mundial da Saúde , Motivação , Pessoa de Meia-Idade , Pesquisa Qualitativa
12.
Regen Med ; 19(7-8): 393-406, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39222046

RESUMO

Background: Perspectives of patients, parents and professional experts on personalized regenerative implants for regenerative medicine purposes are largely unknown.Method: To better understand these perspectives, we conducted four focus groups with professional experts of mixed European nationality (n = 8), Dutch patients with regular implants (n = 8), Dutch and Belgian (n = 5) and Spanish (n = 8) parents of children with cleft palate.Results: Two overarching themes were identified: 'patient-centered research and care' and 'ambivalent attitudes toward personalized regenerative implants'.Discussion: The results reveal that stakeholders should adopt a participatory rather than an impairment discourse and address the ambivalence among professional experts, patients and parents.Conclusion: Considering stakeholder perspectives facilitates ethical and responsible development and use of personalized regenerative implants.


[Box: see text].


Assuntos
Grupos Focais , Pais , Medicina Regenerativa , Humanos , Medicina Regenerativa/métodos , Pais/psicologia , Masculino , Feminino , Próteses e Implantes , Pesquisa Qualitativa , Adulto , Medicina de Precisão/métodos , Pacientes/psicologia
13.
BMC Health Serv Res ; 24(1): 1013, 2024 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-39223608

RESUMO

BACKGROUND: A Learning Health Care Community (LHCC) is a framework to enhance health care through mutual accountability between the health care system and the community. LHCC components include infrastructure for health-related data capture, care improvement targets, a supportive policy environment, and community engagement. The LHCC involves health care providers, researchers, decision-makers, and community members who work to identify health care needs and address them with evidence-based solutions. The objective of this study was to summarize the barriers and enablers to building an LHCC in rural areas. METHODS: A systematic review was conducted by searching electronic databases. Eligibility criteria was determined by the research team. Published literature on LHCCs in rural areas was systematically collected and organized. Screening was completed independently by two authors. Detailed information about rural health care, activities, and barriers and enablers to building an LHCC in rural areas was extracted. Qualitative analysis was used to identify core themes. RESULTS: Among 8169 identified articles, 25 were eligible. LHCCs aimed to increase collaboration and co-learning between community members and health care providers, integrate community feedback in health care services, and to share information. Main barriers included obtaining adequate funding and participant recruitment. Enablers included meaningful engagement of stakeholders and stakeholder collaboration. CONCLUSIONS: The LHCC is built on a foundation of meaningful use of health data and empowers health care practitioners and community members in informed decision-making. By reducing the gap between knowledge generation and its application to practice, the LHCC has the potential to transform health care delivery in rural areas.


Assuntos
Sistema de Aprendizagem em Saúde , Serviços de Saúde Rural , Humanos , Serviços de Saúde Rural/organização & administração , Sistema de Aprendizagem em Saúde/organização & administração , População Rural
14.
Heliyon ; 10(16): e35539, 2024 Aug 30.
Artigo em Inglês | MEDLINE | ID: mdl-39224284

RESUMO

In Africa, urban agriculture is critical in addressing food security issues, economic and environmental sustainability in rapidly urbanizing regions such as urban Ghana. However, the factors that influence urban residents' participation in urban agricultural production under climate change adaptation has little space in the extant literature. Recognizing the increasing challenges posed by climate change, this study aims to understand the socio-economic factors influencing urban households' participation in agricultural activities and its implications for climate change adaptation and to draw urban households' socio-economic characteristics and their association with participating in urban agricultural production in the era of climate change effects in urban areas of Ghana. A quantitative approach is employed, involving a sample size of 362 urban households' across diverse neighbourhoods. Statistical analyses, including descriptive statistics-frequencies and percentages, inferential statistics-chi-square test and binary regression models, are employed to quantify the relationships between demographic factors and participation levels. The data suggests correlations between demographic variables, such as household size and income are significant at an alpha 0.05 in determining an urban household's participation in urban agricultural production under climatic stressors. Meanwhile, more urban households' in middle and high-class areas participate in urban agriculture than the lower class. Land acquisition is basically through purchasing which is a challenge in urban agriculture production. The study concluded that urban household size and monthly income are influential factors in urban households' participation in urban agricultural production even though land acquisition plays a factor. The study suggests that policymakers and stakeholders should harness the potential of urban agriculture for sustainable development in the era of climate change. This should be done through rolling out pro-poor urban development policies like pro-poor rights and legislation in urban areas; poor access to financial markets; and land tenure reforms that include flexible land holding and access by the poor.

15.
SAGE Open Med ; 12: 20503121241276678, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39224892

RESUMO

Objectives: The 2030 Sustainable Development Agenda stresses a feminist approach for healthcare services. Cultural and religious influences impact utilization of healthcare services by Muslim women within the Middle East, posing unique challenges. This paper aimed to investigate the factors influencing Middle Eastern women's utilization of healthcare services within the region. Methods: In the year 2024, a systematic review was conducted. PubMed, Scopus, ProQuest, and the Cochrane Database of Systematic Reviews were searched for this purpose. The quality of the included articles was assessed using the Accuracy, Coverage, Objectivity, Date, Significance (ACODS) checklist. Subsequently, the Joffe method of thematic analysis was employed to analyze the data obtained from the review. Results: A final selection comprising 59 studies was made for inclusion in the research. The studies demonstrated a high level of quality, and the risk of bias within them was deemed acceptable. The thematic analysis revealed seven principal themes, which encompassed Demographic Factors, Level of Education and Awareness, Sources of Information, Risk Factors, Personal Factors, Level of Service Access and Quality, and Organizational Factors. Conclusions: This study highlighted key factors influencing women's utilization of healthcare in the Middle East and potentially the healthcare systems with a large number of Middle Eastern female immigrants around the globe: educational factors such as awareness campaigns and patient education, and personal barriers like fear and cultural norms. Moreover, Telehealth, particularly mHealth, was suggested to enhance women's participation and utilization of healthcare services. Further research is needed to explore this assertion with greater precision.

16.
JMIR Hum Factors ; 11: e48359, 2024 Sep 03.
Artigo em Inglês | MEDLINE | ID: mdl-39226550

RESUMO

BACKGROUND: To enable personalized treatment and shared decision-making in chronic care, relevant health information is collected. However, health information is often fragmented across hospital information systems, digital health apps, and questionnaire portals. This also pertains to hemophilia care, in which scattered information hampers integrated care. We intend to co-design a nationwide digital personal health record (PHR) for patients to help manage their health information. For this, user perspectives are crucial. OBJECTIVE: This study aims to assess patients' and health care providers' perspectives regarding the use of a PHR in hemophilia care in the Netherlands, required functionalities, and expectations and concerns. METHODS: In this semistructured interview study, 19 pediatric and adult persons with hemophilia, parents, and women with other inherited bleeding disorders, as well as 18 health care providers working within and outside of hemophilia treatment centers, participated. Perspectives of patients and providers were explored separately. To explore requirements, participants were asked to prioritize functionalities. RESULTS: Participants expected a PHR would increase the transparency of health information, improve patients' understanding of their illness, and help the coordination of care between health care providers and institutions. Prioritized functionalities included the integration of relevant health information and patient-entered data. Formulated expectations and concerns focused on 4 themes: usability, safety, inclusiveness, and implementation. While patients expressed worries over medicalization (ie, more confrontational reminders of their illness), providers were concerned about an increased workload. CONCLUSIONS: People with hemophilia, their parents, and health care providers welcomed the development of a PHR, as they expected it would result in better coordinated care. Formulated expectations and concerns will contribute to the successful development of a PHR for persons with hemophilia, and ultimately, for all persons with a chronic condition.


Assuntos
Registros de Saúde Pessoal , Hemofilia A , Medicina de Precisão , Pesquisa Qualitativa , Humanos , Hemofilia A/terapia , Masculino , Adulto , Feminino , Medicina de Precisão/métodos , Países Baixos , Pessoa de Meia-Idade , Adolescente , Empoderamento , Criança , Participação do Paciente/psicologia , Adulto Jovem , Entrevistas como Assunto
17.
Child Care Health Dev ; 50(5): e13326, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39237254

RESUMO

BACKGROUND: The Questionnaire of Young People's Participation (QYPP) was developed for use in children and adolescents. To track participation throughout transition from childhood to adulthood, we adapted it for young adults using focus groups. Aim of this study was to validate this measure, the QYPP-Young Adults (QYPP-YA). METHODS: We recruited young adults with cerebral palsy (CP) and a representative, same-aged sample of the general population (GP). The GP-sample was split into two equivalent subsamples, one part to identify the factor structure via exploratory factor analysis and another part to test the resulting model via confirmatory factor analysis. Reliability and different forms of validity were investigated. RESULTS: The final QYPP-YA includes 17 items assigned to six domains (Autonomy, Independency, Intimate Relationships, Interpersonal Relationships, Social Life, Online Communication). Scales show satisfying internal consistencies in the CP-sample and in the GP-sample, except for 'Online Communication'. Convergent, divergent and known-group validity were confirmed. CONCLUSIONS: The QYPP-YA instrument features promising psychometric characteristics to assess key domains of participation in healthy and disabled young adults. It provides a multidimensional, economic and sound assessment for use in population surveys and clinical trials.


Assuntos
Paralisia Cerebral , Psicometria , Humanos , Masculino , Feminino , Paralisia Cerebral/psicologia , Reprodutibilidade dos Testes , Adulto Jovem , Inquéritos e Questionários/normas , Adolescente , Participação Social , Relações Interpessoais , Adulto , Análise Fatorial , Grupos Focais , Pessoas com Deficiência/psicologia
18.
Can J Occup Ther ; : 84174241274743, 2024 Sep 05.
Artigo em Inglês | MEDLINE | ID: mdl-39238244

RESUMO

Background. To evaluate effectiveness of The Greenhouse for autonomy and independence to prepare adults with severe cerebral palsy (CP) for the transition from assisted to independent living. The intervention combines weekly individual sessions using Pathways and Resources for Engagement and Participation together with weekly group sessions. Method. Seven adults with severe CP ages 23-45 years (M = 35; SD = 10) participated in the 20-week program. An Interrupted Time Series quasi-experimental design was used, assessing the intervention effect over time. The Canadian Occupational Performance Measure was administered bi-weekly from baseline to post-intervention to assess activity performance. Functional Independence Measure (FIM), Wheelchair use Confidence scale (WheelCon) and Impact on Participation and Autonomy (IPA) were administered baseline (4 weeks pre-intervention), mid and post-intervention, using Freidman test. Interviews were conducted four weeks after intervention. Findings. All participants' activity performance improved over time with significant clinical improvement in 95% of COPM goals. Significant improvement was seen in FIM (χ2 = 8.07, p = .018) and WheelCon (χ2 = 7.18, p = .028) though not in IPA. Participants described being better prepared, however more aware of challenges. Conclusion. The findings suggest the program may be effective to help adults with severe CP attain goals related to independent living and enhance function.

19.
JMIR Res Protoc ; 13: e58185, 2024 Sep 05.
Artigo em Inglês | MEDLINE | ID: mdl-39235846

RESUMO

BACKGROUND: In the last few years, there has been an increasing interest in the development of artificial intelligence (AI)-based clinical decision support systems (CDSS). However, there are barriers to the successful implementation of such systems in practice, including the lack of acceptance of these systems. Participatory approaches aim to involve future users in designing applications such as CDSS to be more acceptable, feasible, and fundamentally more relevant for practice. The development of technologies based on AI, however, challenges the process of user involvement and related methods. OBJECTIVE: The aim of this review is to summarize and present the main approaches, methods, practices, and specific challenges for participatory research and development of AI-based decision support systems involving clinicians. METHODS: This scoping review will follow the Joanna Briggs Institute approach to scoping reviews. The search for eligible studies was conducted in the databases MEDLINE via PubMed; ACM Digital Library; Cumulative Index to Nursing and Allied Health; and PsycInfo. The following search filters, adapted to each database, were used: Period January 01, 2012, to October 31, 2023, English and German studies only, abstract available. The scoping review will include studies that involve the development, piloting, implementation, and evaluation of AI-based CDSS (hybrid and data-driven AI approaches). Clinical staff must be involved in a participatory manner. Data retrieval will be accompanied by a manual gray literature search. Potential publications will then be exported into reference management software, and duplicates will be removed. Afterward, the obtained set of papers will be transferred into a systematic review management tool. All publications will be screened, extracted, and analyzed: title and abstract screening will be carried out by 2 independent reviewers. Disagreements will be resolved by involving a third reviewer. Data will be extracted using a data extraction tool prepared for the study. RESULTS: This scoping review protocol was registered on March 11, 2023, at the Open Science Framework. The full-text screening had already started at that time. Of the 3,118 studies screened by title and abstract, 31 were included in the full-text screening. Data collection and analysis as well as manuscript preparation are planned for the second and third quarter of 2024. The manuscript should be submitted towards the end of 2024. CONCLUSIONS: This review will describe the current state of knowledge on participatory development of AI-based decision support systems. The aim is to identify knowledge gaps and provide research impetus. It also aims to provide relevant information for policy makers and practitioners. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/58185.


Assuntos
Inteligência Artificial , Sistemas de Apoio a Decisões Clínicas , Humanos
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