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1.
Pediatrics ; 148(1)2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-34183361

RESUMO

Electronic health record (EHR) systems do not uniformly implement pediatric-supportive functionalities. One method of adding these capabilities across EHR platforms is to integrate Web services and Web applications that may perform decision support and store data in the cloud when the EHR platform is able to integrate Web services. Specific examples of these services are described, such as immunization clinical decision support services, consumer health resources, and bilirubin nomograms. Health care providers, EHR vendors, and developers share responsibilities in the appropriate development, integration, and use of Web services and Web applications as they relate to best practices in the areas of data security and confidentiality, technical availability, audit trails, terminology and messaging standards, compliance with the Health Insurance Portability and Accountability Act, testing, usability, and other considerations. It is desirable for health care providers to have knowledge of Web services and Web applications that can improve pediatric capabilities in their own EHRs because this will naturally inform discussions concerning EHR features and facilitate implementation and subsequent use of these capabilities by clinicians caring for children.


Assuntos
Computação em Nuvem , Registros Eletrônicos de Saúde/organização & administração , Pediatria/organização & administração , Navegador , Bilirrubina/sangue , Criança , Segurança Computacional , Confidencialidade , Informação de Saúde ao Consumidor/organização & administração , Sistemas de Apoio a Decisões Clínicas/organização & administração , Humanos , Imunização , Nomogramas , Guias de Prática Clínica como Assunto , Linguagens de Programação
2.
Yakugaku Zasshi ; 141(3): 377-380, 2021.
Artigo em Japonês | MEDLINE | ID: mdl-33642507

RESUMO

Nowadays, approximately 90 percent of the general population in Japan uses the internet and many of them look for health-related information. However, there have been serious concerns about the contents and credibility of these information. Among "mixture of wheat and chaff", information provided by the public domains are expected as accurate and reliable ones. This article reviews five public websites that provide health or health care information for users including the general population: Minds by the Japan Council for Quality Health Care, e-health net, evidence-based Japanese Integrative Medicine (eJIM), Cancer Information Service by the National Cancer Center, Center for Cancer Control and Information Services, Information system on safety and effectiveness for health foods (HF net) by National Institute of Health and Nutrition. These websites show their running policy transparently and have constructed collaborative relationships with each domain experts, and from the people who are not related with the healthcare field including patients in some cases. Each of them is content-rich and well-organized as an individual unit. The organizations that run these websites share the common goal that provides the general population with quality health-related information, however, cooperation have been limited. To increase awareness among the public, it is worthy considering joint efforts of these organizations in future.


Assuntos
Informática Aplicada à Saúde dos Consumidores , Informação de Saúde ao Consumidor , Atenção à Saúde , Internet , Redes Comunitárias , Informática Aplicada à Saúde dos Consumidores/organização & administração , Informática Aplicada à Saúde dos Consumidores/tendências , Informação de Saúde ao Consumidor/organização & administração , Informação de Saúde ao Consumidor/tendências , Inocuidade dos Alimentos , Alimento Funcional , Humanos , Japão , Comportamento de Redução do Risco
3.
Health Commun ; 36(1): 32-41, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33256466

RESUMO

The coronavirus (COVID-19) outbreak poses a substantial threat to public health. Individual efforts to engage in COVID-19 precautionary behaviors are necessary to flatten the pandemic's curve in the waiting period before a vaccine is developed. This study sought to apply the Theory of Motivated Information Management to investigate the relationships among COVID-19 illness uncertainty, information management, and actual precautionary behaviors, both preparatory and preventative. The results of a national opt-in online panel demonstrate that uncertainty discrepancy, anxiety, and information management strategies are key predictors of the adoption of COVID-19 preparation and prevention behaviors. The results further identify diverging associations across age groups with respect to associations between information management and precautionary behaviors. Implications for theory and practice are discussed.


Assuntos
Ansiedade/epidemiologia , COVID-19/epidemiologia , COVID-19/prevenção & controle , Controle de Doenças Transmissíveis/métodos , Informação de Saúde ao Consumidor/organização & administração , Incerteza , Adaptação Psicológica , Adolescente , Adulto , Fatores Etários , Idoso , COVID-19/psicologia , Informação de Saúde ao Consumidor/normas , Feminino , Humanos , Comportamento de Busca de Informação , Masculino , Saúde Mental , Pessoa de Meia-Idade , Motivação , Pandemias , Medição de Risco , Comportamento de Redução do Risco , SARS-CoV-2 , Fatores Socioeconômicos , Adulto Jovem
4.
J Am Geriatr Soc ; 69(4): 1051-1056, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33236778

RESUMO

BACKGROUND/OBJECTIVES: An increasing number of patients are using the internet to supplement information provided by medical professionals. Online geriatric patient education materials (PEMs) should be written at or below a 6th grade reading level (GRL) that takes into account barriers unique to the geriatric population. The objectives of the study are to assess PEMs of geriatric associations' websites and determine whether they are above the GRL recommended by the Centers for Disease Control and National Institutes of Health. DESIGN: Descriptive and correlational methodology. PEMs from 10 major geriatric associations were assessed for their GRL using 10 scales. Eight of the scales provide a numerical GRL while two of the scales provide a visual representation of the GRLs. Analysis was conducted using Readability Studio 2019.3. SETTING: Analysis was conducted February 2020. PARTICIPANTS: Identified 10 geriatric associations and 884 PEMs. MEASUREMENTS: GRLs were measured by 10 validated readability indices: the Degrees of Reading Power and Grade Equivalent test, Flesch-Kincaid grade level, Simple Measure of Gobbledygook test, Coleman-Liau Index, Gunning Fog Index, New Fog Count, New Dale-Chall readability formula, Ford, Caylor, Sticht scale, Raygor readability estimate graph, and Fry readability graph. RESULTS: The mean of all PEMs using the numerical scales was 11.1 ± 2.4. Ninety-nine percent of PEMs are above the 6th GRL. PEMs ranged from a grade 3.0 to 19.0 reading level. Analysis of variance demonstrated a significant difference between associations (P < .0001), and multiple comparison analysis identified the National Institute on Aging as the content easiest to read (9.5 ± 1.6). CONCLUSION: PEMs from geriatric association websites are written above the recommended 6th GRL. As patients increasingly look toward online supplementary health information during COVID-19, there is an opportunity for improving PEMs to enable greater comprehension by the target population.


Assuntos
COVID-19 , Compreensão , Informação de Saúde ao Consumidor , Geriatria , Letramento em Saúde/normas , Educação de Pacientes como Assunto , Informação de Saúde ao Consumidor/organização & administração , Informação de Saúde ao Consumidor/normas , Humanos , Internet , Estados Unidos
5.
Medicine (Baltimore) ; 99(37): e22072, 2020 Sep 11.
Artigo em Inglês | MEDLINE | ID: mdl-32925744

RESUMO

INTRODUCTION: Evidence has consistently shown the high efficacy of human papillomavirus (HPV) vaccines in preventing cervical cancers. However, the HPV vaccine uptake rate in Hong Kong is very low. We will develop and evaluate an innovative, theory-based multidisciplinary team-led school-based HPV vaccination health-promotion program (MDL-SHPVP), engaging female adolescents, parents/guardians, and secondary school personnel in multicomponent educational strategies and interactive discussions. METHODS AND ANALYSIS: A cluster randomized controlled trial is proposed. We will recruit 2520 female adolescents and their parents/guardians from 18 secondary day schools. The MDL-SHPVP is underpinned by the Health Belief Model and Precaution Adoption Process Model. Multicomponent interventions will be offered, including education sessions with small group dialogues with a registered nurse and trained healthcare and lay volunteers, and educational computer games. A team of volunteers will be established to raise HPV, cervical cancer, and HPV vaccine awareness. Outcomes include adolescents' uptake of the HPV vaccine, adolescents' intention to receive HPV vaccination, vaccine acceptance among parents/guardians, and parents'/guardians' and adolescents' HPV knowledge, attitudes, and beliefs. Data will be collected at baseline, 1 month, and 1 year after intervention. The generalized estimating equations analysis will be used for comparing the outcomes between the 2 groups. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Joint Chinese University of Hong Kong-New Territories East Cluster Clinical Research Ethics Committee (Ref. no.: 2019.055). We will disseminate the study findings via peer-reviewed publications and presentations at relevant events and international and local conferences. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov NCT04438291.


Assuntos
Informação de Saúde ao Consumidor/organização & administração , Vacinas contra Papillomavirus , Aceitação pelo Paciente de Cuidados de Saúde , Serviços de Saúde Escolar/organização & administração , Neoplasias do Colo do Útero/prevenção & controle , Adolescente , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Pais/psicologia , Fatores Socioeconômicos , Estudantes/psicologia , Neoplasias do Colo do Útero/virologia
6.
Matern Child Health J ; 24(10): 1238-1247, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-32613332

RESUMO

OBJECTIVES: Parents of children with a chronic illness (CI) are at risk for psychosocial problems. The aim of this study was to refine an existing face-to-face intervention into an online psychosocial group intervention for parents by (1) exploring which themes are important, (2) determine what type of intervention parents would like and (3) assess parents' practical preferences. METHODS: Parents of children with a CI (0-18 years) were invited to complete an online questionnaire. To acquire more in-depth information, focus groups and telephone interviews were conducted. Descriptive statistics were used. RESULTS: 272 parents (mean age = 43.1 years, 85% female) participated. Three focus groups (15 parents) and seven telephone interviews were conducted. Most important themes were: the CI of the child, family functioning, taking care of yourself, relationships with others and practical support. Parents preferred a group with parents of children in the same age category. At first, parents preferred face-to-face contact. After an explanation and demonstration of an online intervention, parents became more positive about online support, mostly because they could participate from home. CONCLUSIONS FOR PRACTICE: Parents have a need for psychosocial support focusing on different themes. Professionals should explain and demonstrate an online intervention to parents. Based on these results, Op Koers Online for parents was developed. An RCT to assess feasibility and effectiveness of the intervention is currently running.


Assuntos
Doença Crônica/psicologia , Terapia Cognitivo-Comportamental/métodos , Informação de Saúde ao Consumidor/métodos , Internet , Pais/educação , Psicoterapia de Grupo/métodos , Qualidade de Vida , Adolescente , Adulto , Criança , Pré-Escolar , Informação de Saúde ao Consumidor/organização & administração , Família , Feminino , Grupos Focais , Necessidades e Demandas de Serviços de Saúde , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Determinação de Necessidades de Cuidados de Saúde , Pais/psicologia , Apoio Social , Estresse Psicológico/psicologia , Inquéritos e Questionários
8.
J Cardiovasc Nurs ; 35(3): 268-272, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32221147

RESUMO

BACKGROUND: Caregivers contribute substantially to patients' management of and recovery from cardiovascular disease (CVD). Yet, the distress that many caregivers experience in this role continues to be underresearched and their needs undersupported. PURPOSE: Situated within a patient engagement framework and adapted from experience-based co-design guidelines, the process of developing a comprehensive caregiver support resource with joint contributions from caregivers and healthcare providers representing multiple disciplines is described. A discussion of the challenges encountered during the development of the caregiver support resource and recommendations for future sites embarking on co-design work are noted. CONCLUSION: Developing feasible and relevant approaches, such as informational support instruments, to meet the needs of the growing population of CVD caregivers is essential. CLINICAL IMPLICATIONS: Although co-design processes are often complex, take more time and resources to implement, and involve multiple levels of an organization and community than traditional practices, these efforts may help to improve healthcare quality to stem the burden of CVD.


Assuntos
Cuidadores/educação , Informação de Saúde ao Consumidor/organização & administração , Insuficiência Cardíaca/enfermagem , Qualidade da Assistência à Saúde , Canadá , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Família/psicologia , Insuficiência Cardíaca/psicologia , Humanos , Determinação de Necessidades de Cuidados de Saúde , Estresse Psicológico/prevenção & controle
9.
Rev Epidemiol Sante Publique ; 68(2): 99-107, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-32037129

RESUMO

BACKGROUND: Concern about health misinformation is longstanding, especially on the Internet. METHODS: Using agent-based models, we considered the effects of such misinformation on a norovirus outbreak, and some methods for countering the possible impacts of "good" and "bad" health advice. The work explicitly models spread of physical disease and information (both online and offline) as two separate but interacting processes. The models have multiple stochastic elements; repeat model runs were made to identify parameter values that most consistently produced the desired target baseline scenario. Next, parameters were found that most consistently led to a scenario when outbreak severity was clearly made worse by circulating poor quality disease prevention advice. Strategies to counter "fake" health news were tested. RESULTS: Reducing bad advice to 30% of total information or making at least 30% of people fully resistant to believing in and sharing bad health advice were effective thresholds to counteract the negative impacts of bad advice during a norovirus outbreak. CONCLUSION: How feasible it is to achieve these targets within communication networks (online and offline) should be explored.


Assuntos
Infecções por Caliciviridae/epidemiologia , Comunicação , Surtos de Doenças , Letramento em Saúde , Internet , Norovirus/fisiologia , Análise de Sistemas , Acesso à Informação , Infecções por Caliciviridae/transmissão , Infecções por Caliciviridae/virologia , Informação de Saúde ao Consumidor/organização & administração , Informação de Saúde ao Consumidor/normas , Informação de Saúde ao Consumidor/estatística & dados numéricos , Letramento em Saúde/organização & administração , Letramento em Saúde/normas , Letramento em Saúde/estatística & dados numéricos , Humanos , Disseminação de Informação , Serviços de Informação/organização & administração , Serviços de Informação/normas , Registros Públicos de Dados de Cuidados de Saúde
10.
Medicine (Baltimore) ; 99(8): e19188, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-32080101

RESUMO

This study concerns the accessibility of health information for people with disabilities. More specifically, by interviewing policy elites who have backgrounds in this area, we seek to obtain their opinions regarding the type of information people with disabilities require, and people with disabilities overall awareness of such information. Based on the information obtained, we also aim to identify methods of improving this accessibility.A focus group interview was conducted involving policy elites who had previously participated in decision-making processes for health policy. These elites were sourced from the fields of academia, medicine, and government. Content analysis was performed using NVivo 10, which is a computer-assisted/aided qualitative data-analysis software.The focus-group participants felt that relevant information for people with disabilities is provided in a fragmentary manner through several channels that have relatively low reliability, which creates difficulties for a significant portion of the target recipients. Discussions regarding the type of health information required by people with disabilities yielded the following topic clusters: information regarding health-care providers who specialize in specific disability types and regarding health behaviors for certain lifecycles, and information that helps people with disabilities return to society. Further, the focus group recommended 2 means of providing essential health information to PWDs in the future. As short-term strategies, the participants proposed simplifying the existing, fragmented information channels and the creation of a comprehensive web-based information portal with an associated call center. As a long-term strategy, they proposed the development of smart-device-based information services that are tailored to the needs of individuals.Efforts to reduce the disparities in health information for people with disabilities are essential for addressing the existing inequality regarding the availability of health information.


Assuntos
Informação de Saúde ao Consumidor/organização & administração , Pessoas com Deficiência , Informação de Saúde ao Consumidor/normas , Feminino , Grupos Focais , Comportamentos Relacionados com a Saúde , Pessoal de Saúde/normas , Acesso aos Serviços de Saúde/organização & administração , Humanos , Internet , Masculino , Telefone
11.
Am J Health Promot ; 34(3): 311-315, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31858828

RESUMO

PURPOSE: Assess relationship among health services received and patients' digital health-care engagement. DESIGN: Quantitative cross-sectional survey study. SETTING: Community health centers in Washington state and DC. SAMPLE: N = 164 adult safety-net patients. INTERVENTION: Not applicable. MEASURES: Outcomes were knowledge and use of health apps. Predictors were health service access (access to specialists and health information); health service delivery (healthy eating and physical activity counsel); health service satisfaction; and perceived service value. ANALYSIS: Descriptive and multivariate regression analyses. Odds ratios (OR) reported for 95% confidence interval (CI). RESULTS: Response rate was 35%. Of all, 71% were knowledgeable of smartphone use for wellness and 48% used health apps. Physical activity (PA) counseling predicted knowledge and health apps use. Respondents receiving PA counseling were 2.61 times more likely to be knowledgeable about using smartphones for health promotion (OR = 2.61; P = .047; 95% CI: 1.01-6.73). Respondents receiving PA counseling were 2.89 times more likely to use health apps (OR = 2.89; P = .022; 95% CI: 1.17-7.17). Health information access predicted health apps use; respondents with easy access to general health information were 0.29 times as likely to use health apps (OR = 0.29; P = .043; 95% CI: 0.09-0.96). CONCLUSION: Targeted preventive care support encourages digital health-care engagement. mHealth may supplement health-care needs outside clinics.


Assuntos
Exercício Físico , Promoção da Saúde/organização & administração , Aplicativos Móveis/estatística & dados numéricos , Participação do Paciente/estatística & dados numéricos , Provedores de Redes de Segurança/estatística & dados numéricos , Adulto , Fatores Etários , Informação de Saúde ao Consumidor/organização & administração , Informação de Saúde ao Consumidor/estatística & dados numéricos , Estudos Transversais , Feminino , Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Promoção da Saúde/estatística & dados numéricos , Acesso aos Serviços de Saúde/organização & administração , Acesso aos Serviços de Saúde/estatística & dados numéricos , Humanos , Masculino , Satisfação do Paciente , Fatores Sexuais , Smartphone , Fatores Socioeconômicos
12.
BMJ Open ; 9(12): e028324, 2019 12 03.
Artigo em Inglês | MEDLINE | ID: mdl-31801743

RESUMO

BACKGROUND: Dementia is a debilitating disease that can lead to major changes in a patient's behaviour and function. It is important to educate both patients with dementia and their non-professional caregivers about the disease. Yet, currently available sources do not seem to be effective for patients and caregivers, who report a need for more information and guidance. A systematic identification of the patients' and caregivers' needs for information and information-seeking behaviour is needed to create information resources that are relevant and beneficial to the target population. OBJECTIVES: This is a protocol for a scoping review aimed at gathering knowledge on the information needs and information-seeking behaviour of patients with dementia and their non-professional caregivers. Our aim was also to provide recommendations for development of future dementia information resources. METHODS: The study will commence in November 2018. Both quantitative and qualitative studies on the information needs of patients with dementia or caregivers will be examined using Arksey and O'Malley's methodological framework for scoping studies. A comprehensive literature search will be conducted in electronic databases and grey literature sources. We will also screen reference lists of included studies and related systematic reviews for additional eligible studies. Two authors will perform screening of citations for eligibility and independently extract data from the included studies in parallel. Any discrepancies will be resolved through discussion. The findings will be presented through a narrative synthesis and reported in line with PreferredReporting Items for Systematic Reviews and Meta-Analyses reporting guidelines. ETHICS AND DISSEMINATION: In this review, all included data will originate from published literature. Ethics approval is therefore not a requirement. We will present our findings at relevant conferences and will submit them for publication in peer-reviewed journals.


Assuntos
Cuidadores/estatística & dados numéricos , Informação de Saúde ao Consumidor/organização & administração , Demência/terapia , Comportamento de Busca de Informação , Armazenamento e Recuperação da Informação/estatística & dados numéricos , Bases de Dados Bibliográficas , Humanos , Determinação de Necessidades de Cuidados de Saúde , Pesquisa Qualitativa , Projetos de Pesquisa , Literatura de Revisão como Assunto
14.
Pediatr. aten. prim ; 21(83): 239-244, jul.-sept. 2019. tab
Artigo em Espanhol | IBECS | ID: ibc-188634

RESUMO

Introducción: diversos estudios identifican la falta de conocimientos y tiempo como una de las barreras para la implementación de los resultados de la investigación en la práctica clínica. El uso de la tecnología de la información y comunicación puede ser una solución a estos problemas. Objetivo: evaluar el alcance y la difusión de los contenidos publicados en el blog Cuidando neonatos relacionados con el consumo de evidencia en cuidados. Material y método: estudio descriptivo transversal. Los instrumentos utilizados fueron Google Analytics y el directorio Blogger. Resultados: el número de páginas vistas en el periodo de revisión (12 de noviembre de 2014 hasta fecha 12 de septiembre de 2018) fue 645 249 durante 155 874 sesiones. La mayoría de las visitas procedían de España y México. De los 144 posts publicados, 26 estaban relacionados con el consumo de evidencia en cuidados. La entrada más vista fue: "RCP neonatal. ¿Repasamos conceptos claves?", con 13 649 visitas. Conclusiones: el alcance de los contenidos publicados en Cuidando neonatos y difundidos a través de sus redes sociales, constatan que el blog puede ser una herramienta que facilite la implementación de cuidados de salud basados en la evidencia en el ámbito de la neonatología


Introduction: several studies have identified the lack of knowledge and time as one of the barriers for the application of research findings to clinical practice. The use of information and communication technologies may offer a solution to these problems. Objective: to asses the reach and diffusion of contents published in the Cuidando neonatos blog related to the consumption of evidence in health care. Material and method: we conducted a cross-sectional descriptive study using Google Analytics and the Directorio Blogger. Results: there were a total of 645 249 page views in the period under study (November 12, 2014 to September 12, 2018) in the course of 155 874 sessions. Most visits came from Spain and Mexico. Of the 144 published posts, 26 had to do with evidence-based care. The most-viewed post was "RCP neonatal. ¿Repasamos conceptos claves?", which received 13 649 visits. Conclusions: the reach of the contents published in the Cuidando neonatos blog and disseminated through its social network profiles demonstrates that blogging can be a powerful tool to facilitate the implementation of evidence-based health care practices in the field of neonatology


Assuntos
Humanos , Recém-Nascido , Prática Clínica Baseada em Evidências/métodos , Cuidado da Criança/organização & administração , Informação de Saúde ao Consumidor/organização & administração , Rede Social , Enfermagem Neonatal/organização & administração , Enfermagem de Atenção Primária/métodos , Estudos Transversais , Blogging/organização & administração
15.
Enferm. nefrol ; 22(3): 293-299, jul.-sept. 2019. tab
Artigo em Espanhol | IBECS | ID: ibc-187886

RESUMO

Introducción: La Poliquistosis Renal Autosómica Dominante es una enfermedad renal crónica responsable del 10% de los casos de insuficiencia renal terminal. La participación y los grupos de apoyo entre iguales son herramientas que mejoran el bienestar, evitando complicaciones y retrasando el avance de la enfermedad. Objetivos: Detectar necesidades informativas, así como recursos de apoyo, en este grupo de pacientes mediante la puesta en marcha de una Escuela de Pacientes con poliquistosis renal autosómica dominante. Material y Método: Se utilizó un diseño mixto (cuantitativo y cualitativo). El estudio se desarrolló mediante cuatro fases: 1) Grupo focal: pacientes con poliquistosis renal y sus cuidadores; 2) Selección de los pacientes expertos; 3) Elaboración de los contenidos del programa de la Escuela de pacientes con poliquitstosis renal autosómica dominante; 4) Pilotaje del programa. Resultados: Se detectaron necesidades de información referentes al tratamiento oral y al afrontamiento de la poliquistosis renal que no están cubiertas por los equipos de nefrología. Conclusiones: La Escuela de Pacientes ha demostrado ser una herramienta útil para detectar necesidades y recursos en pacientes con poliquistosis renal autosómica dominante que han de enfrentarse a una enfermedad crónica donde se requiere la participación del paciente para garantizar la adhesión al tratamiento


Introduction: Autosomal Dominant Polycystic Kidney Disease is a chronic kidney disease responsible for 10% of cases of end-stage renal failure. Participation and peer support groups are tools that improve well-being, avoiding complications and delaying disease progression. Objectives: To detect information needs, as well as support resources, in patients with autosomal dominant polycystic kidney disease trough a Patient School. Material and Method: A mixed design (quantitative and qualitative) was used. The study was developed through four phases: 1) Focus group: patients with autosomal dominant polycystic kidney disease and their caregivers; 2) Selection of expert patients; 3) Preparation of the contents of the program of the Patient School with autosomal dominant polycystic kidney disease; 4) Piloting the program. Results: Information needs regarding oral treatment and coping with autosomal dominant polycystic kidney disease were detected, which are not covered by nephrology teams. Conclusions: Patients School has proven to be a useful tool to detect needs and resources in patients with autosomal dominant polycystic kidney disease who have to face a chronic disease where patient participation is required to ensure adherence to treatment


Assuntos
Humanos , Autogestão/educação , Rim Policístico Autossômico Dominante/enfermagem , Grupos de Treinamento de Sensibilização/organização & administração , Avaliação de Eficácia-Efetividade de Intervenções , Educação de Pacientes como Assunto/estatística & dados numéricos , Progressão da Doença , Informação de Saúde ao Consumidor/organização & administração
16.
Rural Remote Health ; 19(2): 4789, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-31137938

RESUMO

INTRODUCTION: Disparities in cancer outcomes between Indigenous and non-Indigenous people are well reported. Some Australian Indigenous communities' beliefs about cancer may influence health behaviours, support for those with cancer and ,ultimately, treatment outcomes. This project was instigated by request of a cultural adviser from a regional Queensland community and aims to make community perceptions of cancer visible, facilitate development of resources representing these perceptions and briefly evaluate the project from the community's perspective. METHODS: The project was guided by qualitative, participatory and visual research methodology. Community participation was engaged by identifying community champions who helped recruit interested community members and continued project momentum. The project was defined and driven by community, and a consensus decision making approach was used to select resources or activities to represent community perceptions of cancer and raise cancer awareness. Qualitative data were collected from yarning groups at two community forums and subsequent group sessions to explore and define community perceptions of cancer. Informed consent was obtained prior to audio-taped yarning groups. Data were also included from publicly available interviews broadcast on radio and television. All data about community perceptions of cancer and of the project were thematically analysed. Photovoice using cameras was the visual method chosen to capture images and stories representing community cancer beliefs. RESULTS: Three main themes were derived from thematic analysis of data collected about community perceptions of cancer, identified by participants as important to improving cancer outcomes: (1) silence in the community, (2) support is important for survivorship and (3) awareness of cancer and the importance of sharing positive stories. A consensus decision-making approach resulted in the community choosing two resources to stimulate community discussion about cancer, raise awareness and reduce stigma. These were creating a community quilt, with each quilt square representing community perceptions of cancer, and producing a community calendar, with messages promoting healthy behaviours and cancer screening. The overall project was viewed as valuable for facilitating and improving the conversation about cancer with family, friends, the broader community and health professionals. Group sessions were considered important for providing a shared, safe space for support, for asking health related questions and as an instigator to share cancer related knowledge and stories with others. CONCLUSION: Silence around cancer may influence awareness and discussion about cancer, screening participation and help-seeking behaviour in this community. In this project, engaging with the community created a safe space for conversation around a previously taboo topic, which could lead to improved screening and help seeking behaviour. The role of primary health care in reducing health disparities by partnering with community to conduct awareness and prevention activities and by providing culturally appropriate care for Indigenous people is emphasised.


Assuntos
Atitude Frente a Saúde/etnologia , Serviços de Saúde do Indígena/organização & administração , Havaiano Nativo ou Outro Ilhéu do Pacífico/psicologia , Neoplasias/etnologia , Neoplasias/psicologia , Adulto , Informação de Saúde ao Consumidor/organização & administração , Feminino , Humanos , Masculino , Queensland , Percepção Social
17.
Ann Plast Surg ; 82(1): 2-6, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30300222

RESUMO

BACKGROUND: Surgical options for lower extremity reconstruction frequently include a decision between autologous free flap reconstruction and amputation. Patients rely on health education materials for information before making treatment decisions. This study evaluates the quality of online health information for lower extremity reconstruction. METHODS: We identified the top 10 Web sites for "leg amputation" and "leg free flap reconstruction." Three validated tools were used to evaluate literacy demand of materials, including (1) the Simple Measure of Gobbledygook for readability; (2) the Peter Mosenthal and Irwin Kirsch readability formula for complexity of nonprose materials such as list, graphs, charts; and (3) the Centers for Disease Control and Prevention's Clear Communication Index (Index). Differences in mean between the 2 groups were compared using Student t test. RESULTS: Average Simple Measure of Gobbledygook reading grades approximated 12th-grade level and were similar between the 2 groups. This is above the recommended level of sixth-grade health literature. Complexity scores for nonprose materials of these groups were within recommended range and corresponded to very low complexity at a fourth- to seventh-grade level. The Centers for Disease Control and Prevention index was higher for amputation literature compared with free flap reconstruction (70% vs 54%), but the difference was not statistically significant. CONCLUSIONS: Overall, online health resources for lower extremity amputation and free flap reconstruction do not meet the standard for quality and accessible health information. Free flap reconstruction resources are scarce and complex. Patients facing decisions about extremity reconstruction may not have appropriate online health resources available to them to make informed decisions.


Assuntos
Compreensão , Informação de Saúde ao Consumidor/organização & administração , Tomada de Decisões , Internet/estatística & dados numéricos , Extremidade Inferior/cirurgia , Retalhos Cirúrgicos , Amputação Cirúrgica/métodos , Amputação Cirúrgica/estatística & dados numéricos , Feminino , Educação em Saúde/métodos , Humanos , Extremidade Inferior/lesões , Masculino , Satisfação do Paciente , Procedimentos de Cirurgia Plástica/métodos , Arquivos da Web como Assunto
18.
BMJ Qual Saf ; 28(2): 111-120, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30018114

RESUMO

BACKGROUND: Middle-aged and older adults requiring skilled home healthcare ('home health') services following hospital discharge are at high risk of experiencing suboptimal outcomes. Information management (IM) needed to organise and communicate care plans is critical to ensure safety. Little is known about IM during this transition. OBJECTIVES: (1) Describe the current IM process (activity goals, subactivities, information required, information sources/targets and modes of communication) from home health providers' perspectives and (2) Identify IM-related process failures. METHODS: Multisite qualitative study. We performed semistructured interviews and direct observations with 33 home health administrative staff, 46 home health providers, 60 middle-aged and older adults, and 40 informal caregivers during the preadmission process and initial home visit. Data were analysed to generate themes and information flow diagrams. RESULTS: We identified four IM goals during the preadmission process: prepare referral document and inform agency; verify insurance; contact adult and review case to schedule visit. We identified four IM goals during the initial home visit: assess appropriateness and obtain consent; manage expectations; ensure safety and develop contingency plans. We identified IM-related process failures associated with each goal: home health providers and adults with too much information (information overload); home health providers without complete information (information underload); home health coordinators needing information from many places (information scatter); adults' and informal caregivers' mismatched expectations regarding home health services (information conflict) and home health providers encountering inaccurate information (erroneous information). CONCLUSIONS: IM for hospital-to-home health transitions is complex, yet key for patient safety. Organisational infrastructure is needed to support IM. Future clinical workflows and health information technology should be designed to mitigate IM-related process failures to facilitate safer hospital-to-home health transitions.


Assuntos
Informação de Saúde ao Consumidor/organização & administração , Continuidade da Assistência ao Paciente/organização & administração , Serviços de Assistência Domiciliar/organização & administração , Alta do Paciente/normas , Idoso , Idoso de 80 Anos ou mais , Agendamento de Consultas , Informação de Saúde ao Consumidor/normas , Feminino , Geriatria , Serviços de Assistência Domiciliar/normas , Humanos , Cobertura do Seguro , Masculino , Pessoa de Meia-Idade , Planejamento de Assistência ao Paciente/organização & administração , Pesquisa Qualitativa , Encaminhamento e Consulta/organização & administração
19.
Rev. Rol enferm ; 41(11/12,supl): 21-25, nov.-dic. 2018. tab
Artigo em Inglês | IBECS | ID: ibc-179936

RESUMO

Communication between the nurse and the patient's family is a significant aspect of nursing practice. This paper presents the results of a research aimed to characte-rize problematic situations that occur in the relations involving nurses and patients' relatives: I) the type and frequency with which nurses deal with problematic situa-tions involving the patient's relatives in the context of their professional activity; II) the level of difficulty in dealing with these situations; and III) the psychological exhaustion they cause. The research focused on nurses of two clinical services of a public hospital: an In-tensive Care Unit and an Emergency Department. The methodological approach to this study is quantitative and has a descriptive and correlational nature. A question-naire was elaborated for the collection of data, contemplating questions related to the objective of the research. From a total of 99 nurses of the two clinical services, 50 were interviewed. The results show that there are statistically significant differences between the two services regarding the frequency with which nurses are threatened and intimi-dated, being more frequent in the emergency department. The insistent demand for information on the part of the family members constitutes the situation with greater occurrence and, simultaneously, the situation that causes greater impact on nurses. The lack of preparation stands out for the way it correlates with the wea-riness of nurses caused by requests of confidential information by the family on the patient's health status (rs = -0,473; p < 0.05) and the insistent search for information on the part of the relatives (rs = -0.416; p < 0.05)


No disponible


Assuntos
Humanos , Relações Enfermeiro-Paciente , Relações Profissional-Família , Barreiras de Comunicação , Informação de Saúde ao Consumidor/organização & administração , Sistemas de Comunicação no Hospital/tendências , Resolução de Problemas , Conflito Psicológico
20.
Rev. Rol enferm ; 41(11/12,supl): 26-31, nov.-dic. 2018. tab
Artigo em Inglês | IBECS | ID: ibc-179937

RESUMO

The quality and effectiveness of nursing care depends on, among other factors, communication processes configuration between health care team members. The objectives of this study were: I) to determine how nurses evaluate the diffe-rent dimensions of the communicative process; II) to identify the main obstacles to communication; III) to gauge how nurses evaluate the adequacy of different com-munication channels in health services. This was an investigation of quantitative descriptive and correlational. A structured questionnaire was developed to obtain relevant data on the matter. The research was carried out in four health services (Neonatology, Medicine II, Emergency and Basic Emergency) and a total of 75 nur-ses were surveyed. A comparative analysis between the four services revealed no statistically significant differences in how nurses evaluate the communicative pro-cess. This fact indicates that the way in which communication is configured and evaluated is transversal to nursing practice and independent from the context in which it occurs. The research reveals the generally positive way how nurses evalua-te the communication process. However, some weaknesses of communication in the clinical context are identified, mainly related to the mode in which information of organizational nature is disseminated within each department


No disponible


Assuntos
Humanos , Relações Enfermeiro-Paciente , Relações Profissional-Família , Informação de Saúde ao Consumidor/organização & administração , Comunicação em Saúde/métodos , Equipe de Enfermagem/organização & administração , Segurança do Paciente/normas , Qualidade da Assistência à Saúde/normas , Barreiras de Comunicação
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