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1.
Transfusion ; 64(6): 1008-1015, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38660952

RESUMO

BACKGROUND: Despite being the largest racial/ethnic minority group in the United States, Hispanic/Latinos (H/L) are significantly underrepresented among blood donors. A lack of proximal blood donation opportunities may be one factor contributing to these disparities. However, few studies have investigated this possibility. STUDY DESIGN AND METHODS: Proprietary data on mobile blood collections in Maricopa County, Arizona, were gathered for the period of January 01, 2022 to April 30, 2022 and paired with census tract information using ArcGIS. Maricopa County encompasses the city of Phoenix with a total population of approximately 4.5 million people, including 1.5 million H/L residents. Blood drive count was regressed on H/L ethnic density and total population, and model estimates were exponentiated to obtain odds ratios (ORs) and 95% confidence intervals (CIs). RESULTS: During the specified period, approximately 27,000 red blood cell units were collected through mobile drives. Consistent with expectations, when controlling for total neighborhood population, each 10% increase in H/L ethnic density lowered the odds of having a blood drive in the corresponding neighborhood by 12% (OR = 0.88, 95% CI (0.83, 0.92), p < .001). DISCUSSION: These findings provide initial evidence of fewer proximal donation opportunities in areas with greater H/L population density which may contribute to H/L underrepresentation in blood donation and the need for more inclusive collection efforts. Improved access to blood collection is modifiable and could help to increase the overall blood supply, enhance the ability to successfully match specific blood antigen needs of an increasingly diverse population, and bring about a more resilient blood system.


Assuntos
Doadores de Sangue , Hispânico ou Latino , Humanos , Doadores de Sangue/estatística & dados numéricos , Arizona , Feminino , Masculino , Hispânico ou Latino/estatística & dados numéricos , Características de Residência , Etnicidade , Adulto , Doação de Sangue
2.
Transfusion ; 64(7): 1223-1232, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38769631

RESUMO

BACKGROUND: Blood components are costly and scarce. The Blood Stocks Management Scheme (BSMS) was established in the United Kingdom (UK) to support hospital transfusion services and national blood services through collection, analysis, and monthly feedback of data on blood component inventory and wastage management. There is a growing evidence base on how best to deliver feedback for quality improvement. We assessed the quality and utility of the monthly BSMS component reports. METHODS: We assessed the content of BSMS reports issued in March 2023 against established criteria for effective feedback. Two researchers independently rated whether criteria spanning the five domains of goal setting, data collection, feedback content, feedback display and feedback delivery were fully, partially or not met. Disagreements were resolved through discussion. We conducted an online questionnaire survey of recipients of BSMS reports during March 2023 to assess their use of reports and seek suggestions for improvement. RESULTS: Five out of 20 criteria for effective feedback were fully met. Areas for improvement included placing more emphasis in the feedback on positive change, linking data and summary messages, and including specific suggestions for action. Respondents highlighted the value of benchmarked comparisons with other hospital transfusion services. CONCLUSION: There is scope for enhancing the effectiveness and utility of BSMS feedback reports and hence reducing wastage of blood components. This methodology for evaluation of feedback could be utilized to improve other areas of transfusion practice.


Assuntos
Transfusão de Componentes Sanguíneos , Humanos , Reino Unido , Inquéritos e Questionários , Retroalimentação , Bancos de Sangue/normas , Melhoria de Qualidade , Transfusão de Sangue/normas
3.
Transfusion ; 64(3): 483-492, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38263774

RESUMO

BACKGROUND: Patients with hematologic malignancies (HM) often develop transfusion dependence. The patient and caregiver burdens associated with the need for frequent transfusions are high. Home blood transfusions has the potential to reduce these burdens, but is not widely practiced in the United States. We designed a qualitative study to evaluate the patient and caregiver perceptions of the potential for a home blood transfusion program. STUDY DESIGN AND METHODS: Eligible patients included Adult (≥18 years) patients who were English speaking and met the definition for transfusion dependence within 3 months of study enrollment. We identified and interviewed eligible participants (patients and caregivers), using a semi-structured interview guide to elicit patient perceptions of the acceptability, barriers, and benefits related to home blood product transfusions. Interviews were audio recorded and transcribed. Results were imported into NVivo 12 (version 12; QSR International, Burlington, VT) for coding and analysis. RESULTS: We recruited participants until we reached thematic saturation, which occurred at 29 participants (20 patients, 9 caregivers). Among the 20 patient participants, nine had MDS (45%) and 11 had acute leukemia (55%). Most of the patients (60%) reported getting one transfusion per week. Four themes emerged when the participants discussed their perception regarding the potential of a home blood transfusion program: (1) current in-person experience, (2) caregiver burden, (3) perceptions of home blood transfusions, and (4) interest in participating in a home blood transfusion program. CONCLUSION: The concept of home blood transfusions was well received and further research to study its implementation is warranted.


Assuntos
Neoplasias Hematológicas , Leucemia , Adulto , Humanos , Doença Aguda , Transfusão de Sangue/métodos , Cuidadores , Neoplasias Hematológicas/terapia , Pesquisa Qualitativa , Entrevistas como Assunto , Conhecimentos, Atitudes e Prática em Saúde
4.
Transfusion ; 64(3): 428-437, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38299710

RESUMO

BACKGROUND: Regulatory aspects of transfusion medicine add complexity in blinded transfusion trials when considering various electronic record keeping software and blood administration processes. The aim of this study is to explore strategies when blinding transfusion components and products in paper and electronic medical records. METHODS: Surveys were collected and interviews were conducted for 18 sites across various jurisdictions in North America to determine solutions applied in previous transfusion randomized control trials. RESULTS: Sixteen responses were collected of which 11 had previously participated in a transfusion randomized control trial. Various solutions were reported which were specific to the laboratory information system (LIS) and electronic medical record (EMR) combinations although solutions could be grouped into four categories which included the creation of a study product code in the LIS, preventing the transmission of data from the LIS to the EMR, utilizing specialized stickers and labels to conceal product containers and documents in the paper records, and modified bedside procedures and documentation. DISCUSSION: LIS and EMR combinations varied across sites, so it was not possible to determine combination-specific solutions. The study was able to highlight solutions that may be emphasized in future iterations of LIS and EMR software as well as procedural changes that may minimize the risk of unblinding.


Assuntos
Transfusão de Sangue , Registros Eletrônicos de Saúde , Humanos , Transfusão de Componentes Sanguíneos , América do Norte , Projetos de Pesquisa , Ensaios Clínicos Controlados Aleatórios como Assunto
5.
BMC Med Res Methodol ; 24(1): 46, 2024 Feb 22.
Artigo em Inglês | MEDLINE | ID: mdl-38389065

RESUMO

BACKGROUND: Successfully recruiting male participants to complete a healthcare related study is important for healthcare study completion and to advance our clinical knowledgebase. To date, most research studies have examined the barriers and facilitators of female participants in longitudinal healthcare-related studies with limited information available about the needs of males in longitudinal research. This systematic review examines the unique barriers and facilitators to male recruitment across longitudinal healthcare-related research studies. METHODS: Following PRIMSA guidelines, MEDLINE, Embase, CINAHL and Web of Science databases were systematically searched using the terms recruitment and/or retention, facilitators and/or barriers and longitudinal studies from 1900 to 2023 which contained separate data on males aged 17-59 years. Health studies or interventions were defined longitudinal if they were greater than or equal to 12 weeks in duration with 3 separate data collection visits. RESULTS: Twenty-four articles published from 1976-2023 met the criteria. One-third of the studies had a predominantly male sample and four studies recruited only male participants. Males appear disinterested towards participation in health research, however this lack of enthusiasm can be overcome by clear, non-directive communication, and studies that support the participants interests. Facilitating factors are diverse and may require substantial time from research teams. CONCLUSIONS: Future research should focus on the specific impact of these factors across the spectrum of longitudinal health-related studies. Based on the findings of this systematic review, researchers from longitudinal health-related clinical trials are encouraged to consider male-specific recruitment strategies to ensure successful recruitment and retention in their studies. REGISTRATION: This systemic review is registered with the PROSPERO database (CRD42021254696).


Assuntos
Seleção de Pacientes , Humanos , Masculino , Estudos Longitudinais , Adulto , Adolescente , Pessoa de Meia-Idade , Adulto Jovem , Pesquisa sobre Serviços de Saúde/estatística & dados numéricos
6.
BMC Med Res Methodol ; 24(1): 68, 2024 Mar 17.
Artigo em Inglês | MEDLINE | ID: mdl-38494501

RESUMO

BACKGROUND: The challenging nature of studies with incarcerated populations and other offender groups can impede the conduct of research, particularly that involving complex study designs such as randomised control trials and clinical interventions. Providing an overview of study designs employed in this area can offer insights into this issue and how research quality may impact on health and justice outcomes. METHODS: We used a rule-based approach to extract study designs from a sample of 34,481 PubMed abstracts related to epidemiological criminology published between 1963 and 2023. The results were compared against an accepted hierarchy of scientific evidence. RESULTS: We evaluated our method in a random sample of 100 PubMed abstracts. An F1-Score of 92.2% was returned. Of 34,481 study abstracts, almost 40.0% (13,671) had an extracted study design. The most common study design was observational (37.3%; 5101) while experimental research in the form of trials (randomised, non-randomised) was present in 16.9% (2319). Mapped against the current hierarchy of scientific evidence, 13.7% (1874) of extracted study designs could not be categorised. Among the remaining studies, most were observational (17.2%; 2343) followed by systematic reviews (10.5%; 1432) with randomised controlled trials accounting for 8.7% (1196) of studies and meta-analysis for 1.4% (190) of studies. CONCLUSIONS: It is possible to extract epidemiological study designs from a large-scale PubMed sample computationally. However, the number of trials, systematic reviews, and meta-analysis is relatively small - just 1 in 5 articles. Despite an increase over time in the total number of articles, study design details in the abstracts were missing. Epidemiological criminology still lacks the experimental evidence needed to address the health needs of the marginalized and isolated population that is prisoners and offenders.


Assuntos
Criminosos , Prisioneiros , Humanos , Mineração de Dados , Projetos de Pesquisa
7.
Int J Equity Health ; 23(1): 59, 2024 Mar 15.
Artigo em Inglês | MEDLINE | ID: mdl-38491440

RESUMO

BACKGROUND: Partnerships between Higher Education Institutions (HEIs) in the global north and south have commonly been used as a vehicle to drive global health research and initiatives. Among these initiatives, include health system strengthening, research capacity building, and human resource training in developing countries. However, the partnership functioning of many global north-south partnerships still carry legacies of colonialism through unrecognized behavior patterns, attitudes, and belief systems in how they function. Even with research literature calling for a shift from equality to equity in the functioning of these partnerships, many still struggle with issues of complex and unspoken power dynamics. To understand the successes and challenges of north-south partnerships, this paper explored partnership development and functioning of a northern and multi-southern HEIs partnership focused on nutrition education and research. METHODS: A qualitative research approach was used; data were collected through in-depth interviews (IDIs) with questions developed from the Bergen Model of Collective Functioning (BMCF). Thirteen IDIs were conducted with partners from all institutions including stakeholders. FINDINGS: The partnership was built on the foundation of experiences and lessons of a previous partnership. Partners used these experiences and lessons to devise strategies to improve partnership inputs, communication, leadership, roles and structures, and maintenance and communication tasks. However, these strategies had an impact on partnership functioning giving rise to issues of inequitable power dynamics. The northern partner had two roles: one as an equal partner and another as distributor of project funds; this caused a conflict in roles for this partner. The partners distinguished themselves according to partner resources - two partners were named implementing partners and two named supportive partners. Roles and partner resources were the greatest contributors to power imbalances and caused delays in project activities. CONCLUSION: Using the BMCF to examine partnership dynamics illuminated that power imbalances caused a hierarchical stance in the partnership with northern partners having overall control and power of decision-making in the partnership. This could impact the effectiveness and sustainability of project in the southern institutions going forward.


Assuntos
Educação em Saúde , Instituições Acadêmicas , Humanos , Pesquisa Qualitativa , Universidades , Fortalecimento Institucional
8.
J Biomed Inform ; 156: 104670, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38880235

RESUMO

BACKGROUND: Art. 50 of the proposal for a Regulation on the European Health Data Space (EHDS) states that "health data access bodies shall provide access to electronic health data only through a secure processing environment, with technical and organizational measures and security and interoperability requirements". OBJECTIVE: To identify specific security measures that nodes participating in health data spaces shall implement based on the results of the IMPaCT-Data project, whose goal is to facilitate the exchange of electronic health records (EHR) between public entities based in Spain and the secondary use of this information for precision medicine research in compliance with the General Data Protection Regulation (GDPR). DATA AND METHODS: This article presents an analysis of 24 out of a list of 72 security measures identified in the Spanish National Security Scheme (ENS) and adopted by members of the federated data infrastructure developed during the IMPaCT-Data project. RESULTS: The IMPaCT-Data case helps clarify roles and responsibilities of entities willing to participate in the EHDS by reconciling technical system notions with the legal terminology. Most relevant security measures for Data Space Gatekeepers, Enablers and Prosumers are identified and explained. CONCLUSION: The EHDS can only be viable as long as the fiduciary duty of care of public health authorities is preserved; this implies that the secondary use of personal data shall contribute to the public interest and/or to protect the vital interests of the data subjects. This condition can only be met if all nodes participating in a health data space adopt the appropriate organizational and technical security measures necessary to fulfill their role.


Assuntos
Segurança Computacional , Registros Eletrônicos de Saúde , Medicina de Precisão , Medicina de Precisão/métodos , Humanos , Espanha , Europa (Continente) , Confidencialidade
9.
Hum Resour Health ; 22(1): 57, 2024 Aug 20.
Artigo em Inglês | MEDLINE | ID: mdl-39164721

RESUMO

BACKGROUND: Children's health is a global public health priority and a determinant of development and sustainability. Its effective delivery and further improvements require constant and dedicated research on children, especially by child healthcare workers (HCWs). Studies have shown a high involvement of child HCWs from developed countries in child health research, with an under-representation from the global south in authorship and leadership in international collaborations. To our knowledge, there is very little literature on challenges faced by child HCWs in Malawi in conducting child health research. We sought to explore the lived experiences of child HCWs at Kamuzu Central Hospital (KCH) in Malawi by examining their perceptions of child health research and assessing the availability of child health research opportunities. METHODS: From July 2023 to August 2023, we conducted five key informant interviews with purposively sampled policymakers and 20 in-depth interviews with child HCWs at KCH. The interviews were conducted in English, audio-recorded, and transcribed verbatim. We utilised interpretative phenomenological analysis by reviewing initial transcripts for familiarity, generating codes manually, and refining them into broader themes through comparisons and iterative processes. RESULTS: The analysis revealed three main themes on perceptions of child HCWs at KCH in child health research. These are (i) perceived motivation and challenges for engaging in child health research, (ii) perceptions of resource availability and research opportunities at KCH, and (iii) perceptions of gaps in research training and participation among child HCWs. CONCLUSIONS: Our study has uncovered critical factors influencing the low participation of child HCWs in child health research at KCH. Lack of collaboration, limited financial opportunities, and non-research-based training were the key barriers to participation in child health research among child HCWs at KCH. We advocate for the inclusion of child HCWs at all stages of collaborative health research, transparency on funding opportunities for child health research, and inclusion of research in the training of HCWs. These initiatives can strengthen the participation of child HCWs in child health research and ultimately enhance child health outcomes in Malawi.


Assuntos
Atitude do Pessoal de Saúde , Saúde da Criança , Pessoal de Saúde , Humanos , Malaui , Pessoal de Saúde/psicologia , Masculino , Feminino , Pesquisa Qualitativa , Criança , Adulto , Percepção , Motivação
10.
Fam Pract ; 41(2): 92-98, 2024 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-37934751

RESUMO

PURPOSE: Studies in the United States, Canada, Belgium, and Switzerland showed that the majority of health problems are managed within primary health care; however, the ecology of French medical care has not yet been described. METHODS: Nationwide, population-based, cross sectional study. In 2018, we included data from 576,125 beneficiaries from the General Sample of Beneficiaries database. We analysed the reimbursement of consultations with (i) a general practitioner (GP), (ii) an outpatient doctor other than a GP, (iii) a doctor from a university or non-university hospital; and the reimbursement of (iv) hospitalization in a private establishment, (v) general hospital, and (vi) university hospital. For each criterion, we calculated the average monthly number of reimbursements reported on 1,000 beneficiaries. For categorical variables, we used the χ2 test, and to compare means we used the z test. All tests were 2-tailed with a P-value < 5% considered significant. RESULTS: Each month, on average, 454 (out of 1,000) beneficiaries received at least 1 reimbursement, 235 consulted a GP, 74 consulted other outpatient doctors in ambulatory care and 24 in a hospital, 13 were hospitalized in a public non-university hospital and 10 in the private sector, and 5 were admitted to a university hospital. Independently of age, people consulted GPs twice as much as other specialists. The 13-25-year-old group consulted the least. Women consulted more than men. Individuals covered by complementary universal health insurance had more care. CONCLUSIONS: Our study on reimbursement data confirmed that, like in other countries, in France the majority of health problems are managed within primary health care.


Assuntos
Clínicos Gerais , Masculino , Humanos , Feminino , Adolescente , Adulto Jovem , Adulto , Estudos Transversais , Encaminhamento e Consulta , Hospitalização , Assistência Ambulatorial
11.
Global Health ; 20(1): 35, 2024 Apr 25.
Artigo em Inglês | MEDLINE | ID: mdl-38664751

RESUMO

Africa faces a significant burden of infectious diseases, including Malaria and HIV/AIDS, along with an increasing prevalence of non-infectious diseases such as diabetes and cancer. This dual health challenge is amplified by socioeconomic difficulties, restricted access to healthcare, and lifestyle changes, thus present unique scientific needs. Effectively addressing these issues requires a skilled scientific workforce adept in comprehensive healthcare strategies. This analysis explores the critical landscape of health research in Africa, emphasizing the unique opportunity presented by the continent's youthful population, projected to reach almost 1 billion by 2050. The youth's innovative potential and fresh perspectives offer a chance to overcome development barriers in health research. Nevertheless, challenges such as under-resourced education, limited research training, inadequate mentorship, and funding difficulties persist. This paper urgently calls upon African leaders, international partners, and stakeholders to prioritize health research, mobilize funding, forge strategic partnerships, and empower the youth as essential steps to capitalize on the continent's dynamic youth for breakthrough health outcomes. Such investments are vital not just for health but for the overall economic, social, and strategic growth of the continent. Through shared responsibility and a united effort, the potential of African youth can be harnessed, leading to transformative research, improved health outcomes, and a prosperous future. This perspective represents the collective voice of passionate young researchers and advocates across Africa, calling for a new era of health research on the continent.


Assuntos
Pesquisa Biomédica , Humanos , África , Adolescente
12.
Health Expect ; 27(5): e70014, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39235102

RESUMO

BACKGROUND: Guidance on co-production between researchers and people with lived experience was published in 2018 by the National Institute for Health and Care Research (NIHR) advisory group, previously known as INVOLVE. This guidance described sharing power as a key principle within co-production. Authentic sharing of power within co-produced mental health research does not always occur however and remains a challenge to achieve within many projects. OBJECTIVES: To explore what has been learned about the sharing of power in co-production within mental health research since the publication of these guidelines, by synthesising qualitative literature relating to power within co-produced mental health research. METHODS: We carried out a systematic review with thematic synthesis. We searched CINHAL, Embase and PubMed databases to identify qualitative or mixed-method studies relating to power within co-produced mental health research. Studies were independently screened by two reviewers for inclusion and appraised using the Critical Appraisal Skills Programme tool (CASP) for qualitative research. RESULTS: We identified nine papers that met the criteria for inclusion and were included in the synthesis. Three themes were generated: (1) Battling to share power against a more powerful system, (2) Empowerment through relationships and (3) The journey is turbulent, but it is not supposed to be smooth. CONCLUSIONS: Results highlight that power is pervasive, especially within the hierarchical systems research is often conducted within. Sharing power within co-produced mental health research is an ongoing complex process that is not intended to be easy. Respectful trusting relationships can help facilitate power sharing. However, ultimately meaningful change needs to come from research funders, universities and NHS providers. PATIENT OR PUBLIC CONTRIBUTION: The study authors include a lived experience researcher who contributed to the review design, analysis and write-up.


Assuntos
Empoderamento , Saúde Mental , Humanos , Pesquisa Qualitativa , Poder Psicológico , Pesquisa sobre Serviços de Saúde , Pesquisadores
13.
Health Expect ; 27(1): e13944, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-39102736

RESUMO

INTRODUCTION: Ethnic minority populations experience significant health and social care disparities; despite experiencing a greater burden of diseases, these groups are underrepresented in health and social care research. Consequently, related research can be less applicable to these population groups. The REPRESENT study aims to explore the health and social care experiences of ethnic minorities and other minoritised populations, their research interests and appropriate research practices. METHODS: Focus groups and semistructured interviews were conducted between May and September 2022 with members of a number of ethnic minority communities in England. Data were audio recorded, transcribed and thematically coded using NVivo 12. Rigour was determined through extensive sampling, iterative data collection and analysis. FINDINGS: Fifty-two ethnic minority members were engaged in group interviews and one-to-one interviews. Participants included representatives of the following groups: African Caribbean, Eastern European, Gypsy Travellers, Lesbian, Gay, Bisexual, Transgender, Queer, Intersex and Asexual+, Refugee/Asylum Seekers, Somali and South Asian communities. Interviews were also conducted with ethnic minority healthcare providers and researchers. Three overarching categories were identified: health information, medical service experiences, health and social care concerns and health research. Health and social care services challenges were mostly attributed to discrimination, delayed services, poor cultural relevance and language and cultural barriers. The most influential information sources were local community organisations and word-of-mouth. The main health and social care concerns were chronic long-term health conditions, mental health, maternal health and child development. Recommendations for research involved understanding the motivations for participation, improving communication and empowering communities. Top research priorities were long-term health conditions, health promotion and education, early care interventions and understanding community needs. INTERPRETATION: Discrimination and bias in health and social care provision have severe implications for worsening ethnic health inequalities. Healthcare commissioning authorities and policymakers can leverage the preference of ethnic minority groups for pharmacy services and community organisations to improve access to care. Improving research interest and engagement requires understanding individual community needs, community sensitivity, research relevance and cultural appropriateness. PATIENT OR PUBLIC CONTRIBUTION: Members of ethnic minority Patient and Public Involvement and Engagement group and Community Advisory Board supported the REPRESENT study design, conceptualisation and report development.


Assuntos
Grupos Focais , Humanos , Feminino , Masculino , Entrevistas como Assunto , Minorias Étnicas e Raciais , Adulto , Reino Unido , Etnicidade/psicologia , Grupos Minoritários/psicologia , Pessoa de Meia-Idade , Pesquisa Qualitativa , Disparidades em Assistência à Saúde/etnologia , Inglaterra
14.
Health Expect ; 27(1): e13980, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-39102665

RESUMO

BACKGROUND: Less than 1% of studies on child and adolescent health report the involvement of adolescents in health research. This is attributed to barriers experienced by researchers and adolescents in the engagement process. To address this under-involvement of adolescents, we first need a better understanding of the factors that hinder adolescent involvement in health research. OBJECTIVE: We conducted an umbrella review of reviews to consolidate the review-level evidence on the barriers to meaningful involvement of adolescents in health research. METHODS: We preregistered this umbrella review of reviews with PROSPERO (CRD42021287467). We searched 11 databases; Google Scholar; and PROSPERO; supplemented by a hand search of the reference lists of eligible reviews, relevant journals, websites of 472 organisations, and input from experts. This resulted in the inclusion of 99 review articles exploring adolescent involvement in studies on adolescent physical or mental health, which were narratively synthesised. Adolescent coresearchers were engaged at all stages of the review. RESULTS: We found that adolescent involvement in health research is impeded by several challenges experienced by researchers and adolescents. Some challenges experienced by researchers were organisational issues which included limited resources, gatekeeping and paying adolescents. Some barriers were related to a lack of preparedness among researchers and included a lack of awareness of adolescent involvement, the need for training and guidance, and negative attitudes towards participatory research. There were also barriers around how adolescents can be involved, such as researchers finding it challenging to adapt to new methods, issues with recruitment and retention of adolescents, inclusiveness and accessibility. There were also challenges specific to adolescents, such as adolescents' skills and expertise, training, motivations and study goals. Finally, barriers related to the ethical involvement of adolescents included issues with power dynamics, confidentiality, safety and protection of adolescents. Some of the barriers reported by adolescents included tokenistic involvement, inaccessibility of adolescent involvement, and their competing demands. CONCLUSION: Researchers may find this review useful in understanding and planning for potential challenges of involving adolescents in research. Despite many identified barriers to adolescent engagement, few mitigation strategies were identified to address these barriers. There is a clear need to establish best practices for meaningful adolescent involvement in health research. PUBLIC AND PATIENT INVOLVEMENT IN THE REVIEW: Adolescents were involved at multiple stages of this umbrella review of reviews. They reviewed the protocol, screened 25% of the articles at title and abstract screening stage, screened 10% of full-text articles, and worked on data analysis. They also helped plan and conduct a participatory workshop with an adolescent advisory group to discuss the challenges experienced by adolescents in health research.


Assuntos
Saúde do Adolescente , Humanos , Adolescente , Participação do Paciente
15.
Health Expect ; 27(3): e14102, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38872473

RESUMO

INTRODUCTION: The mental health of young people (aged 16-25 years) is a growing public health concern in the United Kingdom due to the increasing numbers of young people experiencing mental health difficulties, with many not in contact with mental health services. To design services that meet the needs of all young people, a diversity of young people must be involved in mental health research, beyond being participants. This Delphi study aimed to identify different types of 'involvement' and to define and describe 'under-representation' in young people's involvement in mental health research. METHODS: Twenty-seven experts in young people's mental health research completed a series of online questionnaires. The experts were academic researchers, patient and public involvement (PPI) professionals and young 'experts by experience'. Round 1 generated panellists' views on 'involvement' and 'under-representation'. Round 2 summarised panellists' responses from Round 1 and sought consensus (minimum 70% agreement) in nine question areas. Round 3 validated the findings of the previous rounds. RESULTS: Consensus was achieved in eight out of nine areas, resulting in a matrix (with definitions) of the different types of young people's involvement in mental health research, from being advisors to involvement ambassadors. The findings generated an agreed-upon definition of under-representation, an identification of when in the research process there is under-representation and the characteristics of the young people who are under-represented. Experts further agreed on demographic data that should be collected to improve reporting on involvement. CONCLUSIONS: This study adds to our understanding of involvement and under-representation in the context of young people's mental health research through expert consensus. It provides a practical resource for researchers considering involving young people in the research process and suggests the data that should be collected to improve reporting on the diversity of the young people involved. PATIENT AND PUBLIC CONTRIBUTION: A research oversight group of five young people advised on this study. They contributed throughout the project-from endorsing the research question to commenting on the findings and dissemination. Two of the group reviewed all participant materials and piloted the initial questionnaire.


Assuntos
Técnica Delphi , Saúde Mental , Humanos , Adolescente , Feminino , Adulto Jovem , Masculino , Reino Unido , Inquéritos e Questionários , Adulto , Participação do Paciente , Serviços de Saúde Mental
16.
Scand J Public Health ; : 14034948241245184, 2024 Apr 10.
Artigo em Inglês | MEDLINE | ID: mdl-38600438

RESUMO

AIMS: Health research in Greenlanders is challenged by a small population, few dedicated researchers and limited funding. Some research areas have proven impactful but gaps in knowledge are unknown. We aimed to quantify health research in Greenland, providing insights for researchers, policymakers and funding agencies to guide future research. METHODS: We identified all peer-reviewed health research publications with the term 'Greenland***' in title or abstract from 2001 to 2020 through the platform entitled The Lens. Our bibliometric analysis included number of publications, publication rate, research types, research topics, citations and author affiliations, as well as funding. RESULTS: From 2001 to 2020, a total of 640 health research publications concerning Greenland or Greenlanders were identified, with an average annual publication growth rate of 2.9%. The major health research topics studied in Greenland were infectious diseases, environmental health and general health. Several research fields, including rheumatology, nephrology and dermatology among others proved understudied at best. Three Danish universities contributed with 33% of all publications, with the International Journal of Circumpolar Health (N=176, 28%) being the top journal destination. The most productive author had 119 article authorships during the period. CONCLUSION: During the past 20 years, Greenland's annual publication rate has been steadily increasing, with an average of 32 articles about health research published each year, which is a higher publication rate than world average. The health research in Greenland is primarily epidemiologic with infectious disease being the most studied research area. Most publications were anchored in Denmark and centred around a few highly productive authors.

17.
BMC Public Health ; 24(1): 1638, 2024 Jun 19.
Artigo em Inglês | MEDLINE | ID: mdl-38898512

RESUMO

BACKGROUND: Stigma, lack of trust in authorities, and poor knowledge can prevent health-seeking behaviour, worsen physical and mental health, and undermine efforts to control transmission during disease outbreaks. These factors are particularly salient with diseases such as mpox, for which 96% of cases in the 2022-2023 UK outbreak were identified among gay, bisexual, queer and men who have sex with men (MSM). This study explored stigma and health-seeking behaviour in Liverpool through the lens of the recent mpox outbreak. METHODS: Primary sources of data were interviews with national and regional key informants involved in the mpox response, and participatory workshops with priority populations. Workshop recruitment targeted Grindr users (geosocial dating/hookup app) and at risk MSM; immigrant, black and ethnic minority MSM; and male sex workers in Liverpool. Data were analysed using a deductive framework approach, building on the Health Stigma and Discrimination Framework. RESULTS: Key informant interviews (n = 11) and five workshops (n = 15) were conducted. There were prevalent reports of anticipated and experienced stigma due to mpox public health messaging alongside high demand and uptake of the mpox vaccine and regular attendance at sexual health clinics. Respondents believed the limited impact of stigma on health-seeking behaviour was due to actions by the LGBTQ + community, the third sector, and local sexual health clinics. Key informants from the LGBTQ + community and primary healthcare felt their collective action to tackle mpox was undermined by central public health authorities citing under-resourcing; a reliance on goodwill; poor communication; and tokenistic engagement. Mpox communication was further challenged by a lack of evidence on disease transmission and risk. This challenge was exacerbated by the impact of the COVID-19 pandemic on the scientific community, public perceptions of infectious disease, and trust in public health authorities. CONCLUSIONS: The LGBTQ + community and local sexual health clinics took crucial actions to counter stigma and support health seeking behaviour during the 2022-2023 UK mpox outbreak. Lessons from rights based and inclusive community-led approaches during outbreaks should be heeded in the UK, working towards more meaningful and timely collaboration between affected communities, primary healthcare, and regional and national public health authorities.


Assuntos
Surtos de Doenças , Promoção da Saúde , Minorias Sexuais e de Gênero , Estigma Social , Confiança , Humanos , Masculino , Promoção da Saúde/métodos , Promoção da Saúde/organização & administração , Surtos de Doenças/prevenção & controle , Reino Unido/epidemiologia , Minorias Sexuais e de Gênero/psicologia , Minorias Sexuais e de Gênero/estatística & dados numéricos , Adulto , Homossexualidade Masculina/psicologia , Homossexualidade Masculina/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , COVID-19/prevenção & controle , COVID-19/epidemiologia , COVID-19/psicologia , Pesquisa Qualitativa
18.
BMC Health Serv Res ; 24(1): 13, 2024 Jan 04.
Artigo em Inglês | MEDLINE | ID: mdl-38178141

RESUMO

BACKGROUND: Despite growing evidence of the potential of arts-based modalities to translate knowledge and spark discussion on complex issues, applications to health policy are rare. This study explored the potential of a research-based theatrical video to increase public capacity and motivation to engage with the complex issues that make Emergency Department wait times such an intractable problem. METHODS: Larry Saves the Canadian Healthcare System is a digital musical micro-series developed from extensive research examining system-level causes of Emergency crowding and the ineffectiveness of prevailing approaches. We released individual episodes and a revised full-length version on YouTube, using organic promotion strategies and paid advertising. We used YouTube Analytics to track views, engagement and viewer demographics, and content-analyzed viewer comments. We also conducted five university-based screenings; 92 students completed questionnaires, rating Larry on 16 descriptors using a 7-point Likert scale. RESULTS: From June 2022 through May 2023, Larry garnered over 100,000 views (76,752 of the full-length version, 35,535 of episodes), 1329 likes, 2780 shares, and 139 comments. Views and watch time were higher among women and positively associated with age. Among YouTube comments, the predominating themes were praise for the video and criticism of the healthcare system. Many commenters applauded the show's accuracy, humor, and/or resonance with their experience; several shared healthcare horror stories. Students overwhelmingly agreed with all positive and disagreed with all negative descriptors, and nearly unanimously deemed the video informative, thought-provoking, and entertaining. Most also affirmed that it had increased their knowledge, interest, and confidence to participate in discussions about healthcare issues. Neither gender, primary language, nor employment in healthcare predicted ratings, but graduate students and those 25+ years old evaluated the video most positively. DISCUSSION: These findings highlight the promise of research-informed musical satire to inform and invigorate discourse on an urgent health policy problem. Larry has reached tens of thousands of viewers, garnered excellent feedback, and received high student ratings. Further research should directly assess educational and behavioural outcomes and explore what facilitative strategies could maximize this knowledge translation product's potential to foster informed, impactful policy dialogue.


Assuntos
Atenção à Saúde , Serviço Hospitalar de Emergência , Mídias Sociais , Humanos , Canadá , Gravação em Vídeo , Salas de Espera
19.
Int J Qual Health Care ; 36(1)2024 Jan 12.
Artigo em Inglês | MEDLINE | ID: mdl-38155609

RESUMO

In today's complex healthcare landscape, exacerbated by resource constraints at various levels, optimization of health professionals' roles is becoming increasingly paramount. Interprofessional collaboration, underpinned by role recognition and teamwork, leads to improved patient and organizational outcomes. Hospital pharmacists play a pivotal role in multidisciplinary teams, and it is imperative to understand multidisciplinary viewpoints on hospital pharmacists' roles to guide role prioritization and organizational efficiency. However, no study extensively investigated multidisciplinary views on values of diverse pharmacist roles in tertiary settings. This study aims to address this gap by examining non-pharmacist health professionals' views on hospital pharmacists' roles, recognizing their specialized niches as a crucial step towards optimizing their roles and services in Australia and internationally. Multiple focus group discussions and interviews were held via a virtual conferencing platform. Study participants were recruited using the study investigators' professional networks who were non-pharmacist health professionals with experience working with pharmacists in hospital settings. Data were collected from transcripts of the focus group recordings, which were later summarized using descriptive statistics and thematic analysis. Overarching themes were categorized and mapped against work system models to conceptualize organizational implications of multidisciplinary feedback, linking them to patient and organizational outcomes. Twenty-seven health professionals participated across focus groups and interviews, with the majority of professions being doctors and nurses. Three major themes were identified as follows: (i) overarching perceptions regarding hospital pharmacists; (ii) professional niches of hospital pharmacists; and (iii) future opportunities to optimize hospital pharmacy services. Valued professional niches included patient and health professional educators, transition-of-care facilitators, and quality use of medicines analysts. The study highlights critical insights into hospital pharmacists' roles in Australia, identifying their niche expertise as vital to healthcare efficiency and success. Based on multidisciplinary feedback, the study advocates for strategic role optimization and targeted research for enhanced clinical, economic, and organizational outcomes.


Assuntos
Pessoal de Saúde , Farmacêuticos , Humanos , Pesquisa Qualitativa , Atenção à Saúde , Hospitais , Atitude do Pessoal de Saúde
20.
J Community Health ; 2024 Sep 06.
Artigo em Inglês | MEDLINE | ID: mdl-39242452

RESUMO

Despite efforts to diversify research and health programs, Black American men remain a "hard-to-reach" population while collectively suffering from some of the worst health outcomes in the United States. Faith- and community-based approaches have shown potential to engage Black Americans in health promotion and health research activities. The purpose of this article is to examine health research participation and trust in research among a sample of Black American men in rural North Carolina who attended a community-based health symposium, culturally tailored for Black American men (n = 112). A cross-sectional survey was administered among men to learn about health status, health concerns, and perception of health research. Among 106 men who completed the survey, most reported no prior participation in health research (68.87%), but almost a third of men reported interest in participating in health research. No significant differences in trust in research was found based on interest in research participation (interested in research participation, not interested in research participation, no response), presenting an opportunity to increase the trustworthiness of medical institutions and build relationships with this population. These findings will inform future research and health programming for Black American men in rural locations.

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