Micro ad-hoc Health Social Networks (uHSN). Design and evaluation of a social-based solution for patient support

Objective: To contribute the design, development, and assessment of a new concept: Micro ad hoc Health Social Networks (uHSN), to create a social-based solution for supporting patients with chronic disease. Design: After in-depth fieldwork and intensive co-design over a 4-year project following Community-Based Participatory Research (CBPR), this paper contributes a new paradigm of uHSN, defining two interaction areas (the “backstage” the sphere invisible to the final user, where processes that build services take place; and the “onstage” the visible part that includes the patients and relatives), and describes a new transversal concept, i.e., “network spaces segments, ” to provide timely interaction among all involved profiles and guaranteeing qualitative relationships. This proposal is applicable to any service design project and to all types of work areas; in the present work, it served as a social-based solution for supporting patients with chronic disease in two real-life health scenarios: a Parkinson disease patient association and a Stroke rehabilitation service in a hospital. These two scenarios included the following main features: thematic (related to the specific disease), private, and secure (only for the patient, relatives, healthcare professional, therapist, carer), with defined specific objectives (around patient support), small size (from tens to hundreds of users), ability to integrate innovative services (e.g., connection to hospital information service or to health sensors), supported by local therapeutic associations, and clustered with preconfigured relationships among users based in network groups. Measurements: Using a mixed qualitative and quantitative approach for 6 months, the performance of the uHSN was assessed in the two environments: a hospital rehabilitation unit working with Stroke patients, and a Parkinson disease association providing physiotherapy, occupational therapy, psychological support, speech therapy, and social services. We describe the proposed methods for evaluating the uHSN quantitatively and qualitatively, and how the scientific community can replicate and/or integrate this contribution in its research. Results: The uHSN overcomes the main limitations of traditional HSNs in the main areas recommended in the literature: privacy, security, transparency, system ecology, Quality of Service (QoS), and technology enhancement. The qualitative and quantitative research demonstrated its viability and replicability in four key points: user acceptance, productivity improvement, QoS enhancement, and fostering of social relations. It also meets the expectation of connecting health and social worlds, supporting distance rehabilitation, improving professionals’ efficiency, expanding users’ social capital, improving information quality and immediacy, and enhancing perceived peer/social/emotional support. The scientific contributions of the present paper are the first step not only in customizing health solutions that empower patients, their families, and healthcare professionals, but also in transferring this new paradigm to other scientific, professional, and social environments to create new opportunities

Evaluating the Information Usefulness of Online Health Information for Third-party Patients

Online health interactions (OHIs) can benefit patients, physicians, and society. However, little research has been conducted that studies the social value of OHIs for third-party patients who view previous OHIs concerning similar health issues to theirs. Drawing on the literature on social support and information uncertainty, this study established a theoretical model to explore the roles of treatment information, prevention information, and emotional support in determining information usefulness perceived by third-party patients, and whether such relationships are contingent on information uncertainty. The model was tested using “health questions and answers” textual data from 1,848 OHIs. The results indicate that prevention information and emotional support significantly improve information usefulness perceived by third-party patients. When the level of information uncertainty regarding physicians’ replies is high, the effect of treatment information is strengthened and the effect of emotional support is weakened, indicating both positive and negative contingent roles of information uncertainty. This study has implications for practitioners and also contributes to the literature on online health information, social support, information science, and information uncertainty

Does Informatics enable or inhibit the delivery of patient-centred, coordinated, and quality-assured care: a Delphi study. A contribution of the Imia Primary Health Care Informatics Working Group

Background: Primary care delivers patient-centred and coordinated care, which should be quality-assured. Much of family practice now routinely uses computerised medical record (CMR) systems, these systems being linked at varying levels to laboratories and other care providers. CMR systems have the potential to support care. Objective: To achieve a consensus among an international panel of health care professionals and informatics experts about the role of informatics in the delivery of patient-centred, coordinated, and quality-assured care. Method: The consensus building exercise involved 20 individuals, five general practitioners and 15 informatics academics, members of the International Medical Informatics Association Primary Care Informatics Working Group. A thematic analysis of the literature was carried out according to the defined themes. Results:The first round of the analysis developed 27 statements on how the CMR, or any other information system, including paper-based medical records, supports care delivery. Round 2 aimed at achieving a consensus about the statements of round one. Round 3 stated that there was an agreement on informatics principles and structures that should be put in place. However, there was a disagreement about the processes involved in the implementation, and about the clinical interaction with the systems after the implementation. Conclusions: The panel had a strong agreement about the core concepts and structures that should be put in place to support high quality care. However, this agreement evaporated over statements related to implementation. These findings reflect literature and personal experiences: whilst there is consensus about how informatics structures and processes support good quality care, implementation is difficult

The Church Bridge Project Focus Group Results: African American Perspectives of Weight Management Programs to Improve Nutrition and Physical Activity Behaviors

Background: The prevalence of obesity is disproportionately high among African Americans in the Southern US. More information is needed about factors that influence participation in nutrition and physical activity programs to promote healthy weight. Objective: The purpose of this study is to explore the weight management perceptions of young to middle aged adult African Americans. Methods: The Church Bridge Project intervention participants were recruited for two focus groups. Qualitative data were recorded, transcribed and a thematic content analysis was conducted to identify major themes. Results: Barriers included technology learning curve/burden and competing priorities. Facilitators included support, limited cost, convenience, and health. Participants perceived the term “weight management” program as overwhelming and defeating. Conclusion: The Church Bridge Project model confirmed social support and disease prevention as key factors for weight management. Further work should substantiate social support as a key factor to guide minority health efforts

A Conceptual Framework of Digital Empowerment of Informal Carers: An Expert Elicitation Study

Many studies on online health communities (OHCs) have focused on patients’ well-being. The capabilities of OHCs to effect other psychosocial states like empowerment have been under-explored. Additionally, the study of empowerment of other healthcare stakeholders, specifically informal carers, has not attracted much study. This is despite evidence that carers use OHCs as an information and self-care resource in dealing with the stress and strain of caregiving. It is not clear how moderator support may influence carer empowerment. We propose a conceptual model to explore how moderated OHCs may influence empowerment of carers. In order to assess the model and support its robustness, this paper uses expert interviews of academics and industry professionals, with the view to focusing the research as well as operationalise the model. Results suggest a favourable acceptance of the model by experts, and thematic analysis of their conversations generated an additional construct

Social Media in Healthcare

Despite its significant potential there has been limited analysis of the use of interactive social media in a healthcare setting. This paper considers important feedback and advice from cancer patients at a large Canadian academic health science centre, along with a review of Social Media literature, Information Seeking Theory, Virtual Communities literature, Social Theory, Adaptive Structuration Theory (AST), and technology evolution to propose a high-level, theoretical interactive-dynamic social media platform for cancer patients. Further, it puts forward a research question and four propositions to guide future empirical research to assess whether this type of social media platform positively influences patient and provider satisfaction, health outcomes and value for money in the treatment of cancer patients

Innovative instruction: learning in blended human anatomy education

Despite the robust literature surrounding the benefits of blended learning including improved student learning and positive student perceptions of learning (Bishop & Verleger, 2013; O\u27Flaherty & Phillips, 2015), simply rearranging the structure of activities or incorporating technology does not ensure a more meaningful learning experience (Duffy & McDonald, 2008; Gopal et al., 2006). There exists a danger of educators attempting the translation of blended learning without thoroughly understanding how it works (Ash, 2012). Considering the definition of blended learning as the organic integration of thoughtfully selected and complementary F2F and online approaches and technologies Garrison & Vaughan, 2008, p. 148), achieving meaningful learning the blended classroom requires intentional design, mindful collaboration, and complete integration between the F2F experience and asynchronous online technology. Therefore, this study aimed to understand how anatomy faculty create meaningful learning spaces within their blended anatomy course. By conducting formal research that is focused on understanding the experiences of anatomy faculty in their blended learning course through the theoretical framework of community of inquiry, collaborative learning, and discovery learning, this study informs current and future undergraduate anatomy education by providing insight into how learning happens within this space

Social support, social capital and online community e-loyalty: an empirical study

Online communities, as an essential manifestation of online social relationships, sociality factors (including social support factors and social relationship factors, etc.) ought to facilitate the formation of community trust and community satisfaction. However, although the existing literature has explored the underlying mechanisms of online community trust and satisfaction formation, few studies implemented research from the integrated sociality perspectives. In this thesis, we integrate social capital theory and social support theory to consider social capital and social support as important antecedent social factors in forming community trust and community satisfaction, which influence users' trust and satisfaction in online communities. Community trust and satisfaction further promote community loyalty. Specifically, this thesis scrutinizes the influence of three levels of social support factors such as information support, emotional support, and human-computer network management support and three kinds of social capital such as structure, cognition, and relationship to online community trust and satisfaction. Based on the proposed research model, 430 online community users' survey data were collected through an empirical questionnaire and the research model was tested through the partial least squares structural equation model method. The results of the thesis suggest that social support factors, including information support, emotional support, and interpersonal network interaction support, and social capital factors including structural capital, relational capital, and cognitive capital significantly affect community users' loyalty not only directly but also indirectly through enhancing community users' trust and satisfaction. Thus, users' trust and satisfaction with the community are significant mediating variables.Nas comunidades online, como uma importante manifestação das relações sociais online, os fatores de socialidade (incluindo fatores de apoio social e fatores de relacionamento social) devem facilitar a formação de confiança e satisfação da comunidade. No entanto, embora a literatura existente tenha explorado os mecanismos subjacentes à formação da confiança e da satisfação da comunidade online, poucos estudos consideraram a perspectiva social de forma integrada. Nesta tese, integramos a teoria do capital social e a teoria do suporte social para considerar o capital social e o suporte social como importantes fatores sociais antecedentes na formação da confiança e satisfação da comunidade, que influenciam a confiança e a satisfação dos utilizadores em comunidades online. A confiança e a satisfação da comunidade promovem ainda mais a lealdade da comunidade. Especificamente, esta tese estuda a influência de três níveis de fatores de suporte social - suporte de informação, suporte emocional e suporte de gestão da relação homen-computador - e três tipos de capital social - estrutura, cognição e relacionamento - na confiança e satisfação da comunidade online. Com base no modelo de pesquisa proposto, 430 observações de utilizadores de comunidades online foram recolhidos através de um questionário. O modelo de pesquisa foi testado através de métodos de equação estruturais. Os resultados da tese relevam que fatores de suporte social, incluindo suporte de informação, suporte emocional e suporte de interação de rede interpessoal, e fatores de capital social, incluindo capital estrutural, capital relacional e capital cognitivo, afetam significativamente a lealdade dos utilizadores da comunidade, não apenas diretamente mas também indiretamente, aumentando a confiança e a satisfação dos utilizadores da comunidade; a confiança e a satisfação dos usuários com a comunidade são variáveis mediadoras importantes

Uso de informações por famílias de prematuros internados em unidade de terapia intensiva neonatal : contribuições da internet

Orientadora: Profª. Drª. Verônica de Azevedo MazzaDissertação (mestrado) - Universidade Federal do Paraná, Setor de Ciências da Saúde, Programa de Pós-Graduação Mestrado Profissional em Enfermagem. Defesa: Curitiba, 20/12/2016Inclui referências : f.116-129Área de concentração: Prática profissional em enfermagemLinha de Pesquisa: Processo de cuidar em saúde e enfermagemResumo: A família experiencia inúmeras emoções ao vivenciar o internamento do prematuro na Unidade de Terapia Intensiva Neonatal, logo busca informações na internet a fim de se aproximar do contexto da unidade intensivista, entender a situação enfrentada e complementar as informações dadas pelos profissionais de saúde. Trata-se de um estudo exploratório com abordagem qualitativa, cujos objetivos são identificar as necessidades e fontes de informação sobre saúde/doença das famílias de prematuros internados em Unidade de Terapia Intensiva Neonatal e analisar o uso de informações on-line sobre saúde/doença por famílias de prematuros internados em Unidade de Terapia Intensiva Neonatal. O estudo foi realizado em uma Unidade de Terapia Intensiva Neonatal do município de Curitiba. Os participantes foram 33 familiares de recém-nascidos internados na referida unidade. A coleta de dados ocorreu no período de abril a julho de 2016, por meio de entrevista semiestruturada, em qual constou a caracterização da família e do recém-nascido, e questões norteadoras relacionadas a vivência dos entrevistados quanto ao uso de informações sobre saúde/doença on-line. Os dados foram analisados conforme os passos propostos por Creswell (2010) e com a finalidade de aprimorar a análise das informações utilizou-se o software Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires®. O estudo foi aprovado pelo Comitê de Ética em Pesquisa do Setor de Ciências da Saúde da Universidade Federal do Paraná e pelo Comitê de Ética em Pesquisa da instituição coparticipante. Ademais, a elaboração do estudo procurou atender aos passos recomendados pelo Critérios Consolidados para Relatar uma Pesquisa Qualitativa. No resultado deste estudo apresenta-se a caracterização das famílias e dos recém-nascidos internados na Unidade de Terapia Intensiva Neonatal e as quatro categorias que emergiram da análise, intituladas: Emoções vivenciadas no internamento do prematuro no ambiente intensivista; Informação, fluxo, conexões e potencialidades; Informações de saúde/doença on-line: entre sites e conteúdos; Necessidade de informação: "eu quero saber". As famílias são envoltas por emoções diversas durante o internamento do filho, bem como suas necessidades informativas são amplas e a partir dessas, os familiares são impulsionados a procurar dados na internet, os quais são utilizados para diversos fins. Além disso, a maioria das famílias desconhece os sites que consulta e identifica apenas a ferramenta de busca utilizada para encontrar as fontes. Conclui-se que o acesso à internet é impossível de ser restrito e controlado, por isso cabe aos profissionais de saúde orientar os sujeitos e construir uma relação linear e de confiança, a fim de subsidiar o cuidado de enfermagem à família em consonância com suas necessidades, anseios e realidade. Palavras chave: Informação de saúde ao consumidor. Recém-nascido. Unidades de Terapia Intensiva Neonatal. Família.Abstract: The family experiences innumerable emotions when experiencing the hospitalization of prematurity in the Neonatal Intensive Care Unit, soon searches for information on the Internet in order to approach the context of the intensivist unit, understand the faced' situation confronted and complement the information given by health professionals. This is an exploratory study with a qualitative approach, which objectives are to identify the needs and sources of information about health/illness used by families of premature infants hospitalized in a Neonatal Intensive Care Unit and to analyze the use of online information about health/illness by families of premature infants admitted to the Neonatal Intensive Care Unit. The study accomplished out in a Neonatal Intensive Care Unit of the city of Curitiba. Participants were 33 relatives of newborns admitted to the unit. Data collection took place in the period from April to July 2016, through a semi-structured interview, which consisted the characterization of the family and the newborn, and guiding questions related to the interviewees' experience regarding the use of information about health/illness online. The data were analyzed according to the steps proposed by Creswell (2010) and with the purpose of improving the analysis of the information used the Interface for Multidimensional Analysis of Textes et de Questionnaires® software. The study approved by the Ethics Committee on Research of the Health Sciences Sector of the Federal University of Paraná and by the Ethics Committee of the participating institution. In addition, the elaboration of the study sought to follow the steps recommended by the Consolidated Criteria for Reporting a Qualitative Research. In the result of this study, we present the characterization of families and newborns hospitalized in the Neonatal Intensive Care Unit and the four categories that emerged from the analysis, entitled: Emotions experienced in the hospitalization of the premature in the Intensive Care Unit; Information, flow, connections and potentialities; Online health/illness information: between sites and content; Need for information: "I want to know". Families surrounded by different emotions during the hospitalization of the son, as well as their informational needs are broad and from these, family members driven to look for data on the Internet, which are used for various purposes. In addition, most families are unaware of the sites they query and only identify the search tool used to find the sources. Concluded that access to the internet is impossible to be restricted and controlled, so it is up to health professionals to guide the subjects and build a linear and trustful relationship in order to subsidize nursing care to the family in line with their needs, wishes and reality. Keywords: Consumer health information. Newborn. Neonatal Intensive Care Units. Family