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1.
J Med Internet Res ; 23(6): e29395, 2021 06 09.
Artigo em Inglês | MEDLINE | ID: mdl-34106074

RESUMO

BACKGROUND: In 2020, the number of internet users surpassed 4.6 billion. Individuals who create and share digital data can leave a trail of information about their habits and preferences that collectively generate a digital footprint. Studies have shown that digital footprints can reveal important information regarding an individual's health status, ranging from diet and exercise to depression. Uses of digital applications have accelerated during the COVID-19 pandemic where public health organizations have utilized technology to reduce the burden of transmission, ultimately leading to policy discussions about digital health privacy. Though US consumers report feeling concerned about the way their personal data is used, they continue to use digital technologies. OBJECTIVE: This study aimed to understand the extent to which consumers recognize possible health applications of their digital data and identify their most salient concerns around digital health privacy. METHODS: We conducted semistructured interviews with a diverse national sample of US adults from November 2018 to January 2019. Participants were recruited from the Ipsos KnowledgePanel, a nationally representative panel. Participants were asked to reflect on their own use of digital technology, rate various sources of digital information, and consider several hypothetical scenarios with varying sources and health-related applications of personal digital information. RESULTS: The final cohort included a diverse national sample of 45 US consumers. Participants were generally unaware what consumer digital data might reveal about their health. They also revealed limited knowledge of current data collection and aggregation practices. When responding to specific scenarios with health-related applications of data, they had difficulty weighing the benefits and harms but expressed a desire for privacy protection. They saw benefits in using digital data to improve health, but wanted limits to health programs' use of consumer digital data. CONCLUSIONS: Current privacy restrictions on health-related data are premised on the notion that these data are derived only from medical encounters. Given that an increasing amount of health-related data is derived from digital footprints in consumer settings, our findings suggest the need for greater transparency of data collection and uses, and broader health privacy protections.


Assuntos
Comportamento do Consumidor/estatística & dados numéricos , Informação de Saúde ao Consumidor/estatística & dados numéricos , Coleta de Dados/ética , Conjuntos de Dados como Assunto/provisão & distribuição , Entrevistas como Assunto , Privacidade/psicologia , Pesquisa Qualitativa , Adolescente , Adulto , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estados Unidos , Adulto Jovem
2.
PLoS One ; 16(2): e0247421, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33617557

RESUMO

BACKGROUND: HIV is a major global public health challenge, claiming the lives of over 32 million people so far. The satisfaction of HIV-affected clients with the quality of their HIV services at treatment centres is crucial for quality improvement. This article assesses clients' satisfaction with different aspects of the overall care experience and seeks to determine if the type of health facility ownership is a predictor of satisfaction. METHODS: A cross-sectional study involving 430 respondents was conducted between September and October 2019. Purposeful and convenient sampling techniques were used to select health facilities and potential respondents, respectively. A pre-tested, interviewer-administered questionnaire was used to collect data. Binary logistic regression was used to assess the association between type of health facility and clients' satisfaction based on the six assessed aspects of care, and p˂0.05 was considered statistically significant. RESULTS: The general clients' satisfaction with HIV/AIDS services at care and treatment centres was 92.3%. Respondents from public health facilities were most satisfied with privacy and confidentiality (100%), physical environment (100%), counseling (99.5%) and drug availability (99.5%); respondents from private health facilities were most satisfied with the time spent in the facility (95.9%); while respondents from faith-based health facilities were most satisfied with staff-patient communication (99.2%). However, after adjusting for confounders, only one aspect of care, that of "time spent in the facility," showed significant association with the type of health facility. CONCLUSION: Generally, clients' satisfaction with HIV/AIDS services at care and treatment centres in the Ubungo District, Dar es Salaam was high. This finding should encourage health care providers to maintain high-quality services to sustain clients' satisfaction.


Assuntos
Síndrome de Imunodeficiência Adquirida/tratamento farmacológico , Síndrome de Imunodeficiência Adquirida/psicologia , Infecções por HIV/tratamento farmacológico , Infecções por HIV/psicologia , HIV/efeitos dos fármacos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Satisfação do Paciente/estatística & dados numéricos , Síndrome de Imunodeficiência Adquirida/virologia , Adulto , Atitude do Pessoal de Saúde , Confidencialidade/psicologia , Aconselhamento , Estudos Transversais , Feminino , Pessoal de Saúde/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação Pessoal , Privacidade/psicologia , Qualidade da Assistência à Saúde , Inquéritos e Questionários , Tanzânia
3.
J Relig Health ; 60(1): 188-201, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-32648085

RESUMO

The purpose of this study was to determine the feelings, thoughts, perceptions and cultural standpoint of nursing students concerning patient privacy. This study was conducted as a qualitative descriptive design. The homogeneous sampling method, purposive sampling method for qualitative research samples, was used to determine the study group. Data were collected from 17 nursing students at a state university in Turkey. Individual semi-structured interviews were conducted, and content analysis was used to analyze data. Three main themes emerged from the data: perception of privacy, factors affecting patient privacy and suggested solutions. Four sub-categories emerged: religion, gender, culture and reassuring communication. The perceptions of many of the students relating to the concept of privacy coincided with the concepts of confidentiality and all kinds of information concerning the patient. It was seen that the most effective intervention among the students' solution proposals to ensure privacy was the necessity to make physical improvements in hospitals.


Assuntos
Privacidade , Estudantes de Enfermagem , Adulto , Confidencialidade/psicologia , Feminino , Humanos , Masculino , Privacidade/psicologia , Pesquisa Qualitativa , Estudantes de Enfermagem/psicologia , Estudantes de Enfermagem/estatística & dados numéricos , Turquia , Adulto Jovem
4.
Urology ; 147: 37-42, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32888982

RESUMO

OBJECTIVE: The aim of the study is to evaluate how individual and couple's sexuality had changed during the COVID-19 pandemic-related quarantine. METHODS: A quantitative correlational research study was conducted, using a web-based survey. RESULTS: About 1576 participants were involved: 1018 women (64.6%) and 558 men (35.4%). A significant decline in the mean well-being scores during the quarantine, compared to before, was reported. A positive correlation between the well-being scores and the number of sexual intercourse (SI) before and during the quarantine was found. The mean number of SI decreased significantly during the quarantine. The main reasons were: poor privacy (43.2%) and lack of psychological stimuli (40.9%). About 1124 respondents (71.3%) did not report sexual desire (SD) reduction. A positive association between SD and SI during the quarantine was found. About 61.2% did not report autoerotism reduction. In those who reported decreased masturbation activity, the main causes were poor privacy (46.4%) and lack of desire (34.7%). We found that men presented lower SD during the quarantine, than women (P < 0.01). CONCLUSION: Potentially, the more time available might lead couples to reconnect at an intimate level and to improve their sexuality. However, the majority of quarantined participants experienced reduced number of SI per week, with poor household privacy and lack of psychological stimuli as cited causes, even as a majority did not report reduced autoeroticism.


Assuntos
Coito/psicologia , Libido , Masturbação/psicologia , Privacidade/psicologia , Quarentena/psicologia , Adolescente , Adulto , COVID-19/epidemiologia , COVID-19/prevenção & controle , Feminino , Humanos , Itália/epidemiologia , Masculino , Pessoa de Meia-Idade , Pandemias/prevenção & controle , SARS-CoV-2 , Fatores Sexuais , Inquéritos e Questionários/estatística & dados numéricos , Adulto Jovem
5.
Cyberpsychol Behav Soc Netw ; 24(6): 426-431, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33337264

RESUMO

This study's aim was to uncover psychological and social motives for using untact services and to explore the relationships between identified motivations and attitudinal and continuous behavioral intention variables. We conducted a survey with 328 untact service users, and used exploratory and confirmatory factor analysis to find underlying motivations. The findings suggest that users of untact services have four primary motives. Individuals use untact services to protect their personal information (privacy), to increase their control over business transactions (control), to enjoy the process itself (fun), and to avoid uncomfortable interactions with employees (interaction avoidance). In addition, identified motivations and attitudes toward as well as continuing intention to use the services were all positively related. Among the motivations, control showed the strongest relationship with both attitude and continuance intention.


Assuntos
Motivação , Privacidade/psicologia , Interação Social , Atitude , Humanos , Intenção , Internet
6.
Biomed Res Int ; 2020: 4634737, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33145349

RESUMO

Healthcare providers have disparate views of family presence during cardiopulmonary resuscitation; however, the attitudes of physicians have not been investigated systematically. This study investigates the patterns and determinants of physicians' attitudes to FP during cardiopulmonary resuscitation in Saudi Arabia. A cross-sectional design was applied, where a sample of 1000 physicians was surveyed using a structured questionnaire. The study was conducted in the southern region of Saudi Arabia for over 11 months (February 2014-December 2014). The collected data was analyzed using the Pearson chi-square test. Spearman's correlation analysis and chi-square test of independence were used for the analysis of physicians' characteristics with their willingness to allow FP. 80% of physicians opposed FP during cardiopulmonary resuscitation. The majority of them believed that FP could lead to decreased bedside space, staff distraction, performance anxiety, interference with patient care, and breach of privacy. They also highlight FP to result in difficulty concerning stopping a futile cardiopulmonary resuscitation, psychological trauma to family members, professional stress among staff, and malpractice litigations. 77.9% mostly disagreed that FP could be useful in allaying family anxiety about the condition of the patient or removing their doubts about the care provided, improving family support and participation in patient care, or enhancing staff professionalism. Various concerns exist for FP during adult cardiopulmonary resuscitation, which must be catered when planning for FP execution.


Assuntos
Atitude do Pessoal de Saúde , Reanimação Cardiopulmonar/psicologia , Família/psicologia , Ansiedade de Desempenho/psicologia , Médicos/psicologia , Adulto , Reanimação Cardiopulmonar/ética , Estudos Transversais , Feminino , Parada Cardíaca/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Privacidade/psicologia , Arábia Saudita , Inquéritos e Questionários
7.
Matern Child Health J ; 24(11): 1396-1403, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-33025236

RESUMO

OBJECTIVES: Substance misuse during pregnancy can be harmful to the health of both mothers and infants. Existing recovery services or prenatal care for pregnant women with substance use disorders (SUD) in the U.S. and other countries typically fall short in providing the necessary specialized care women with SUDs need. Disclosure of substance misuse is one key factor in gaining access to specialized prenatal care; yet, barriers such as social stigma and internal shame and guilt lead many women to under-report any substance misuse during their pregnancy. This study sought to understand the process of how and why pregnant women with SUDs choose to disclose or not disclose their substance misuse to their providers when seeking prenatal care. METHODS: Data were collected through interviews with N = 21 women with SUDs in the northeast U.S. whose young children had been exposed to opioids, cocaine, or MAT in utero. Thematic, inductive analysis using line-by-line coding was conducted to understand the perspectives of the women. RESULTS: The women's narratives suggested a clear tension regarding whether to disclose their substance misuse to any providers during their pregnancy. Four themes describing the process of disclosure or non-disclosure were found, including reasons for and ways of being secret or choosing to disclose their substance misuse during pregnancy. CONCLUSIONS FOR PRACTICE: The centrality of shame, guilt, and stigma regarding substance misuse must be addressed by medical and mental health providers in order to increase disclosure and improve access to care for women with SUDs.


Assuntos
Comportamento de Busca de Ajuda , Acontecimentos que Mudam a Vida , Gestantes/psicologia , Privacidade/psicologia , Transtornos Relacionados ao Uso de Substâncias/psicologia , Adulto , Serviços de Proteção Infantil , Medo/psicologia , Feminino , Humanos , Entrevistas como Assunto/métodos , New England , Gravidez , Pesquisa Qualitativa , Estigma Social , Transtornos Relacionados ao Uso de Substâncias/complicações , Transtornos Relacionados ao Uso de Substâncias/terapia
8.
PLoS One ; 15(8): e0237183, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32813741

RESUMO

Personal information is a precious resource, not only for commercial interests but also for the public benefit. Reporting personal location data, for example, may aid efficient traffic flows and sharing one's health status may be a crucial instrument of disease management. We experimentally study individuals' willingness to contribute personal information to information-based public goods. Our data provide evidence that-compared to monetary contributions to public goods-information may be substantially under-provided. We show that the degree of information provision is strongly correlated to the information's implicit (emotional and cognitive) costs. Individual's reluctance to share personal information with high implicit, in particular emotional costs, may seriously limit the effectiveness of information-based public goods.


Assuntos
Disseminação de Informação , Informações Pessoalmente Identificáveis/economia , Privacidade/psicologia , Cognição , Confidencialidade/psicologia , Gerenciamento Clínico , Emoções , Feminino , Seguimentos , Registros de Saúde Pessoal , Nível de Saúde , Humanos , Masculino , Estudantes , Inquéritos e Questionários
9.
Ned Tijdschr Geneeskd ; 1642020 06 17.
Artigo em Holandês | MEDLINE | ID: mdl-32749802

RESUMO

Any doctor may be confronted with young people who are thinking about committing suicide or intend to commit suicide. According to existing guidelines, these intentions should be taken seriously and these thoughts, intentions and behaviours should be examined in order to get a complete perspective on the origins, levels of concern and primary safety needs. In the case of young people, it is also important to encourage the parents to become involved in follow-up treatment and safety planning, even if the young person is reluctant to inform his or her parents. In most cases, the importance of parental responsibility to provide care and safety trumps the patient's desire of secrecy, especially in life-threatening emergency situations such as suicidal behaviour. Referral to a mental health facility is often required for further diagnosis and treatment.


Assuntos
Poder Familiar/psicologia , Responsabilidade Social , Suicídio/psicologia , Adolescente , Comportamento do Adolescente/psicologia , Adulto , Feminino , Humanos , Masculino , Pais/psicologia , Privacidade/psicologia , Ideação Suicida , Adulto Jovem
10.
BMC Public Health ; 20(1): 525, 2020 Apr 19.
Artigo em Inglês | MEDLINE | ID: mdl-32306931

RESUMO

BACKGROUND: The last decade has highlighted how menstrual hygiene management (MHM) is a public health issue because of its link to health, education, social justice and human rights. However, measurement of MHM has not been validated across different studies. The objective of this manuscript was to test the psychometric properties of a MHM scale. METHODS: An embedded mixed-method design was utilized. The girls (age 12-19) were from three districts of Uttar Pradesh (Mirzapur, Jaunpur and Sonebhadra), India. A total of 2212 girls participated in the structured questionnaire. Trained interviewers collected the data on tablets using computer assisted personal interviewing. A total of 36 FGDs were conducted among 309 girls between. Trained moderators collected the data. Factor analysis and thematic analysis was conducted to analyze and triangulate the data. RESULTS: More than 90% of the girls were from a marginalized caste. Overall, 28% of the girls practiced all six MHM behaviors adequately. The factor analysis found five separate constructs corresponding to menstrual health and hygiene management (MHHM) with a variation of 84% and eigenvalue of 1.7. Preparation of clean absorbent, storage of clean absorbent, frequency of changing and disposal loaded separately, corresponding to menstrual health. Privacy to change and hygiene loaded together (eigenvalue 0.91 each), corresponding to hygiene management. An underlying theme from the FGD was menstruation as a taboo and lack of privacy for changing the absorbent. CONCLUSION: MHM is multi-dimensional construct comprising of behaviors which were time-bound by menstruation (menstrual health) and behaviors not time-bound by menstruation (hygiene management). Based on these results, the author recommends that MHHM is used as an acronym in the future and proposes a revised definition for MHHM.


Assuntos
Higiene , Menstruação/psicologia , Escalas de Graduação Psiquiátrica/normas , Autocuidado/psicologia , Inquéritos e Questionários/normas , Adolescente , Criança , Pesquisa Participativa Baseada na Comunidade , Estudos Transversais , Análise Fatorial , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Índia , Produtos de Higiene Menstrual , Privacidade/psicologia , Psicometria , Marginalização Social/psicologia , Adulto Jovem
11.
PLoS One ; 15(4): e0232037, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32339179

RESUMO

The popularity of social media has increased users' social visibility. However, users' limited ability to control information spread could compromise privacy. People care about how others perceive them. We examined people's concerns for others' evaluations on their behaviors under different degrees of privacy conditions. Using a variant of the dictator game, we induced dictators to self-select into pro-self or pro-social types and asked recipients to give written evaluations of the dictators. We varied the degree of personal information privacy by making the written content known to the corresponding dictators only, all dictators, or either of them with equal chance. Also, the dictators could avoid receiving the message at a price. We showed that pro-self dictators' willingness to pay to conceal messages decreased when information privacy diminished. Thus, results indicated that image concerns wane in an environment where information privacy is weak. Our results contribute to understanding of the privacy paradox.


Assuntos
Comportamento de Escolha , Confidencialidade/psicologia , Informações Pessoalmente Identificáveis , Privacidade/psicologia , Autorrevelação , Comportamento Social , Mídias Sociais , Tomada de Decisões , Feminino , Jogos Experimentais , Humanos , Masculino
12.
Cyberpsychol Behav Soc Netw ; 23(4): 218-224, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-31990578

RESUMO

Little attention has been given academically to empirically tested theoretical frameworks that aim at measuring the risk of adolescents falling victim to cybergrooming. To this end, we have applied the routine activity theory (RAT) to investigate whether exposure to motivated offenders (PC/laptop ownership and Internet access in one's own bedroom), capable guardianship (parental mediation strategies of Internet use), and target suitability (adolescents' online disclosure of private information) might predict cybergrooming victimization among adolescents. Using data from a cross-sectional survey of 5,938 adolescents from Germany, India, South Korea, Spain, Thailand, and the United States, ranging in age from 12 to 18 (M = 14.77, SD = 1.60), we found that PC/laptop ownership and Internet access in one's own bedroom, parental mediation, and online disclosure are all directly associated with cybergrooming victimization. Although instructive parental mediation is negatively related to online disclosure and cybergrooming victimization, restrictive mediation is positively related to both. In addition, online disclosure partially mediated the relationship between parental mediation and cybergrooming victimization. The analyses confirm the effectiveness of applying RAT to cybergrooming. Moreover, this study highlights the need for prevention programs, including lessons on age-appropriate information and communication technology usage and access, to educate parents on using instructive strategies of Internet mediation, and inform adolescents about how to avoid disclosing too much private information online. RAT could function as a theoretical framework for these programs.


Assuntos
Comportamento do Adolescente/psicologia , Vítimas de Crime/psicologia , Cyberbullying/psicologia , Adolescente , Criança , Estudos Transversais , Feminino , Alemanha , Humanos , Índia , Internet/estatística & dados numéricos , Masculino , Poder Familiar/psicologia , Privacidade/psicologia , República da Coreia , Autorrevelação , Espanha , Tailândia , Estados Unidos
13.
PLoS One ; 15(1): e0227800, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31978096

RESUMO

The Internet of Things (IoT) brings internet connectivity to everyday electronic devices (e.g. security cameras and smart TVs) to improve their functionality and efficiency. However, serious security and privacy concerns have been raised about the IoT which impact upon consumer trust and purchasing. Moreover, devices vary considerably in terms of the security they provide, and it is difficult for consumers to differentiate between more and less secure devices. One proposal to address this is for devices to carry a security label to help consumers navigate the market and know which devices to trust, and to encourage manufacturers to improve security. Using a discrete choice experiment, we estimate the potential impact of such labels on participant's purchase decision making, along with device functionality and price. With the exception of a label that implied weak security, participants were significantly more likely to select a device that carried a label than one that did not. While they were generally willing to pay the most for premium functionality, for two of the labels tested, they were prepared to pay the same for security and functionality. Qualitative responses suggested that participants would use a label to inform purchasing decisions, and that the labels did not generate a false sense of security. Our findings suggest that the use of a security label represents a policy option that could influence behaviour and that should be seriously considered.


Assuntos
Segurança Computacional/legislação & jurisprudência , Comportamento do Consumidor/economia , Tomada de Decisões , Internet das Coisas/economia , Privacidade/psicologia , Adolescente , Adulto , Idoso , Comportamento do Consumidor/estatística & dados numéricos , Feminino , Humanos , Internet das Coisas/legislação & jurisprudência , Internet das Coisas/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Políticas , Privacidade/legislação & jurisprudência , Inquéritos e Questionários/estatística & dados numéricos , Dispositivos Eletrônicos Vestíveis/economia , Dispositivos Eletrônicos Vestíveis/psicologia , Dispositivos Eletrônicos Vestíveis/estatística & dados numéricos , Adulto Jovem
14.
J Cancer Educ ; 35(3): 522-529, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-30847836

RESUMO

Biospecimen donation is essential for studies of cancer prevention, early detection, and treatment. Donations from minority groups, for whom the cancer burden is high, are infrequent and inadequate for research purposes. The obstacles to donation of biospecimens by African Americans and other minority groups must be identified. Patients aged 18-85 years were surveyed based on the clinic visited (group A: GI/primary care and group B: oncology with confirmed cancer diagnosis) and analyzed as separate groups. The validated biobanking attitudes and knowledge survey (BANKS) as well as pancreatic cancer questions were used. In group A, 278/292 surveys were completed (5/6 patients participated). In group B, 54/59 surveys were completed (4/5 patients participated). There were low mean scores on the BANKS knowledge sections, specifically in regard to specimen ownership and the separation of research and medical records. Also, two major concerns limited donation: (1) fear that personal, medical, and family medical information may be stolen from the biobank; and (2) mistrust that biospecimens could be used for unintended purposes. Low knowledge about biospecimen acquisition, added to mistrust, warrant community-based, and patient education in an effort to improve attitudes, increase participation, and regain healthy therapeutic alliances.


Assuntos
Afro-Americanos/psicologia , Bancos de Espécimes Biológicos/tendências , Medo/psicologia , Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Registros de Saúde Pessoal/ética , Participação do Paciente/estatística & dados numéricos , Privacidade/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Pesquisa Biomédica , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem
15.
Biosystems ; 187: 104051, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31629783

RESUMO

The human mind is constituted by inner, subjective, private, first-person conscious experiences that cannot be measured with physical devices or observed from an external, objective, public, third-person perspective. The qualitative, phenomenal nature of conscious experiences also cannot be communicated to others in the form of a message composed of classical bits of information. Because in a classical world everything physical is observable and communicable, it is a daunting task to explain how an empirically unobservable, incommunicable consciousness could have any physical substrates such as neurons composed of biochemical molecules, water, and electrolytes. The challenges encountered by classical physics are exemplified by a number of thought experiments including the inverted qualia argument, the private language argument, the beetle in the box argument and the knowledge argument. These thought experiments, however, do not imply that our consciousness is nonphysical and our introspective conscious testimonies are untrustworthy. The principles of classical physics have been superseded by modern quantum physics, which contains two fundamentally different kinds of physical objects: unobservable quantum state vectors, which define what physically exists, and quantum operators (observables), which define what can physically be observed. Identifying consciousness with the unobservable quantum information contained by quantum physical brain states allows for application of quantum information theorems to resolve possible paradoxes created by the inner privacy of conscious experiences, and explains how the observable brain is constructed by accessible bits of classical information that are bound by Holevo's theorem and extracted from the physically existing quantum brain upon measurement with physical devices.


Assuntos
Encéfalo/fisiologia , Comunicação , Estado de Consciência , Privacidade/psicologia , Teoria Quântica , Estado de Consciência/fisiologia , Humanos , Observação
16.
Nurs Ethics ; 27(2): 514-526, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31291830

RESUMO

BACKGROUND: Privacy is one of the key principles in health care and requires understanding of the cultural aspects of patients' privacy. In Western cultures privacy is focused on the individual, however, in some non-Western cultures, privacy is linked to the collectivism of the community or religion. OBJECTIVES: The objective of this study is to describe the factors related to the realisation of privacy of Somali refugees in health care by describing the factors related to the patient, healthcare professional and interpreter. RESEARCH DESIGN: The data were collected from Somali refugees (N = 29) using a qualitative questionnaire and were analysed by deductive content analysis based on factors related to the patient, healthcare professional and interpreter. ETHICAL CONSIDERATION: Ethical approval was obtained from the University of Turku, and research permissions were obtained from all participating institutions. FINDINGS: Factors related to the patient were as follows: privacy was realised when the patient had self-determination; was able to act according to Somali culture; had knowledge and understanding of treatment; and trusted the healthcare professional. Factors related to the healthcare professional were as follows: the healthcare professional was expected to be of the same gender as the patient, act professionally, focus on the health issues, and to have knowledge and understanding of the Somali culture. Factors related to the interpreter were as follows: the presence and Somali background of the interpreter decreased privacy; the interpreter was expected to be of the same gender as the patient; to have competence and to behave professionally. DISCUSSION: Gender congruence, professionalism and caring attitude and common understanding between the Somali patient and Finnish provider increase the privacy of Somali patients. CONCLUSION: Somali patients' privacy can be improved by increasing healthcare professionals' understanding of Somali culture, acknowledging the importance of gender concordance in relation to healthcare professionals and interpreters, and the effect of the presence of the interpreter on patients' privacy.


Assuntos
Privacidade/psicologia , Refugiados/psicologia , Adulto , Feminino , Finlândia , Grupos Focais/métodos , Humanos , Masculino , Pesquisa Qualitativa , Somália/etnologia , Inquéritos e Questionários
17.
J Neural Eng ; 17(1): 016039, 2020 01 28.
Artigo em Inglês | MEDLINE | ID: mdl-31766026

RESUMO

OBJECTIVE: Brain-computer interface (BCI) research and commercially available neural devices generate large amounts of neural data. These data have significant potential value to researchers and industry. Individuals from whose brains neural data derive may want to exert control over what happens to their neural data at study conclusion or as a result of using a consumer device. It is unclear how BCI researchers understand the relationship between neural data and BCI users and what control individuals should have over their neural data. APPROACH: An online survey of BCI researchers (n = 122) gathered perspectives on control of neural data generated in research and non-research contexts. The survey outcomes are discussed and other relevant concerns are highlighted. MAIN RESULTS: The study found that 58% of BCI researchers endorsed giving research participants access to their raw neural data at the conclusion of a study. However, researchers felt that individuals should be limited in their freedom to either donate or sell these data. A majority of researchers viewed raw neural data as a kind of medical data. Survey respondents felt that current laws and regulations were inadequate to protect consumer neural data privacy, though many respondents were also unfamiliar with the details of existing guidelines. SIGNIFICANCE: The majority of BCI researchers believe that individuals should have some but not unlimited control over neural data produced in research and non-research contexts.


Assuntos
Interfaces Cérebro-Computador/normas , Disseminação de Informação , Propriedade/normas , Privacidade , Pesquisadores/normas , Inquéritos e Questionários , Adulto , Interfaces Cérebro-Computador/psicologia , Feminino , Humanos , Disseminação de Informação/métodos , Masculino , Pessoa de Meia-Idade , Privacidade/psicologia , Pesquisadores/psicologia
18.
Nurs Inq ; 26(4): e12301, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31273900

RESUMO

This paper focuses on the patient's perspective and the philosophical underpinnings that support what might be considered optimal for the future design of the intensive care unit (ICU) patient room. It also addresses the question of whether the aspects that support at-homeness are applicable to ICU patient rooms. The concept of "at-homeness" in ICUs is strongly related to privacy and control of space and territory. This study investigates whether the sense of at-homeness can be created in an ICU, when one or more patients share a room. From an interdisciplinary perspective, we critically reflect on various aspects associated with conflicts surrounding the use of ICU patient rooms. Thus, from an architectural and a caring perspective, the significance of space and personal territory in ICU patient rooms is emphasized. Recommendations for further research are suggested. In conclusion, privacy and control are deemed to be essential factors in the stimulation of recovery processes and the promotion of well-being in situations involving severe illness or life-threatening conditions.


Assuntos
Pacientes Internados/psicologia , Unidades de Terapia Intensiva/organização & administração , Decoração de Interiores e Mobiliário , Iluminação , Quartos de Pacientes/normas , Privacidade/psicologia , Emoções , Previsões , Arquitetura Hospitalar , Humanos , Ruído , Sistemas Automatizados de Assistência Junto ao Leito/organização & administração , Suécia
19.
J Biomed Inform ; 95: 103222, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-31176040

RESUMO

BACKGROUND: Personal health information is a valuable resource to the advancement of research. In order to achieve a comprehensive reform of data infrastructure in Australia, both public engagement and building social trust is vital. In light of this, we conducted a study to explore the opinions, perceived risks and trustworthiness regarding the use of personal health information for research, in a sample of the public attending a tertiary healthcare facility. METHODS: The Consumer Opinions of Research Data Sharing (CORDS) study was a questionnaire-based design with 249 participants who were attending a public tertiary healthcare facility located on the Gold Coast, Australia. The questionnaire was designed to explore opinions and evaluate trust and perceived risk in research that uses personal health information. Concept analysis was used to identify key dimensions of perceived risk. RESULTS: Overall participants were supportive of research, highly likely to participate and mostly willing to share their personal health information. However, where the perceived risk of data misuse was high and trust in others was low, participants expressed hesitation to share particular types of information. Performance, physical and privacy risks were identified as key dimensions of perceived risk. CONCLUSION: This study highlights that while participant views on the use of personal health information in research is mostly positive, where there is perceived risk in an environment of low trust, support for research decreases. The three key findings of this research are that willingness to share data is contingent upon: (i) data type; (ii) risk perception; and (iii) trust in who is accessing the data. Understanding which factors play a key role in a person's decision to share their personal health information for research is vital to securing a social license.


Assuntos
Pesquisa Biomédica , Registros de Saúde Pessoal/psicologia , Disseminação de Informação , Privacidade/psicologia , Confiança/psicologia , Adolescente , Adulto , Idoso , Atitude , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Atenção Terciária à Saúde , Adulto Jovem
20.
JMIR Mhealth Uhealth ; 7(4): e12578, 2019 04 05.
Artigo em Inglês | MEDLINE | ID: mdl-30950799

RESUMO

BACKGROUND: The growing field of personal sensing harnesses sensor data collected from individuals' smartphones to understand their behaviors and experiences. Such data could be a powerful tool within mental health care. However, it is important to note that the nature of these data differs from the information usually available to, or discussed with, health care professionals. To design digital mental health tools that are acceptable to users, understanding how personal sensing data can be used and shared is critical. OBJECTIVE: This study aimed to investigate individuals' perspectives about sharing different types of sensor data beyond the research context, specifically with doctors, electronic health record (EHR) systems, and family members. METHODS: A questionnaire assessed participants' comfort with sharing six types of sensed data: physical activity, mood, sleep, communication logs, location, and social activity. Participants were asked about their comfort with sharing these data with three different recipients: doctors, EHR systems, and family members. A series of principal component analyses (one for each data recipient) was performed to identify clusters of sensor data types according to participants' comfort with sharing them. Relationships between recipients and sensor clusters were then explored using generalized estimating equation logistic regression models. RESULTS: A total of 211 participants completed the questionnaire. The majority were female (171/211, 81.0%), and the mean age was 38 years (SD 10.32). Principal component analyses consistently identified two clusters of sensed data across the three data recipients: "health information," including sleep, mood, and physical activity, and "personal data," including communication logs, location, and social activity. Overall, participants were significantly more comfortable sharing any type of sensed data with their doctor than with the EHR system or family members (P<.001) and more comfortable sharing "health information" than "personal data" (P<.001). Participant characteristics such as age or presence of depression or anxiety did not influence participants' comfort with sharing sensed data. CONCLUSIONS: The comfort level in sharing sensed data was dependent on both data type and recipient, but not individual characteristics. Given the identified differences in comfort with sensed data sharing, contextual factors of data type and recipient appear to be critically important as we design systems that harness sensor data for mental health treatment and support.


Assuntos
Armazenamento e Recuperação da Informação/classificação , Serviços de Saúde Mental/tendências , Privacidade/psicologia , Smartphone/normas , Adolescente , Adulto , Idoso , Confidencialidade/psicologia , Confidencialidade/normas , Estudos Transversais , Feminino , Humanos , Masculino , Serviços de Saúde Mental/normas , Serviços de Saúde Mental/estatística & dados numéricos , Pessoa de Meia-Idade , Psicometria/instrumentação , Psicometria/métodos , Smartphone/estatística & dados numéricos , Inquéritos e Questionários
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