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1.
Qual Life Res ; 32(7): 2069-2077, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-36862301

RESUMEN

PURPOSE: To determine the relationships between impact of secondary health conditions (SHCs), treatment of SHCs, and life satisfaction (LS) following spinal cord injury (SCI) across 21 countries. Hypotheses were as follows: (1) Persons with SCI and fewer SHCs report higher LS and (2) Persons who receive treatment for SHCs report higher LS than those who do not receive treatment. METHODS: Cross-sectional survey, including 10,499 persons with traumatic or non-traumatic SCI aged 18 years or older and living in the community. To assess SHCs, 14 items adapted from the SCI-Secondary Conditions Scale were used (range 1-5). SHCs index was calculated as the mean of all 14 items. LS was assessed using a selection of 5 items from the World Health Organization Quality of Life Assessment. LS index was calculated as the mean of these 5 items. RESULTS: South Korea, Germany, and Poland exhibited the highest (2.40-2.93) and Brazil, China, and Thailand the lowest (1.79-1.90) impact of SHCs. Indexes for LS and SHCs were inversely correlated (- 0.418; p < 0.001). Mixed Model Analysis showed that the fixed effect (key predictors of the study) of SHCs index (p < 0.001) and the positive interaction between SHCs index and treatment (p = 0.002) were significant determinants of LS. CONCLUSION: Persons with SCI across the world are more likely to perceive better LS if they experience fewer SHCs and receive treatment for SHCs, in comparison to those who do not. Prevention and treatment of SHCs following SCI should be a high priority in order to improve the lived experience and enhance LS.


Asunto(s)
Calidad de Vida , Traumatismos de la Médula Espinal , Humanos , Calidad de Vida/psicología , Estudios Transversales , Traumatismos de la Médula Espinal/rehabilitación , Satisfacción Personal , Brasil
2.
BMC Public Health ; 23(1): 428, 2023 03 06.
Artículo en Inglés | MEDLINE | ID: mdl-36879229

RESUMEN

BACKGROUND: The COVID-19 pandemic has exacerbated health disparities in vulnerable groups (e.g., increased infection, hospitalization, and mortality rates in people with lower income, lower education, or ethnic minorities). Communication inequalities can act as mediating factors in this relationship. Understanding this link is vital to prevent communication inequalities and health disparities in public health crises. This study aims to map and summarize the current literature on communication inequalities linked with health disparities (CIHD) in vulnerable groups during the COVID-19 pandemic and to identify research gaps. METHODS: A scoping review of quantitative and qualitative evidence was conducted. The literature search followed the guidelines of PRISMA extension for scoping reviews and was performed on PubMed and PsycInfo. Findings were summarized using a conceptual framework based on the Structural Influence Model by Viswanath et al. RESULTS: The search yielded 92 studies, mainly assessing low education as a social determinant and knowledge as an indicator for communication inequalities. CIHD in vulnerable groups were identified in 45 studies. The association of low education with insufficient knowledge and inadequate preventive behavior was the most frequently observed. Other studies only found part of the link: communication inequalities (n = 25) or health disparities (n = 5). In 17 studies, neither inequalities nor disparities were found. CONCLUSIONS: This review supports the findings of studies on past public health crises. Public health institutions should specifically target their communication to people with low education to reduce communication inequalities. More research about CIHD is needed on groups with migrant status, financial hardship, not speaking the language in the country of residence, sexual minorities, and living in deprived neighborhoods. Future research should also assess communication input factors to derive specific communication strategies for public health institutions to overcome CIHD in public health crises.


Asunto(s)
COVID-19 , Humanos , Comunicación , COVID-19/epidemiología , Escolaridad , Lenguaje , Pandemias
3.
Hum Resour Health ; 20(1): 35, 2022 05 07.
Artículo en Inglés | MEDLINE | ID: mdl-35525924

RESUMEN

BACKGROUND: In April 2020, the World Health Organization (WHO) Information Network for Epidemics produced an agenda for managing the COVID-19 infodemic. "Infodemic" refers to the overabundance of information-including mis- and disinformation. In this agenda it was pointed out the need to create a competency framework for infodemic management (IM). This framework was released by WHO on 20th September 2021. This paper presents the WHO framework for IM by highlighting the different investigative steps behind its development. METHODS: The framework was built through three steps. Step 1 included the preparatory work following the guidelines in the Guide to writing Competency Framework for WHO Academy courses. Step 2 was based on a qualitative study with participants (N = 25), identified worldwide on the basis of their academic background in relevant fields of IM or of their professional experience in IM activities at the institutional level. The interviews were conducted online between December 2020 and January 2021, they were video-recorded and analyzed using thematic analysis. In Step 3, two stakeholder panels were conducted to revise the framework. RESULTS: The competency framework contains four primary domains, each of which comprised main activities, related tasks, and knowledge and skills. It identifies competencies to manage and monitor infodemics, to design, conduct and evaluate appropriate interventions, as well as to strengthen health systems. Its main purpose is to assist institutions in reinforcing their IM capacities and implementing effective IM processes and actions according to their individual contexts and resources. CONCLUSION: The competency framework is not intended to be a regulatory document nor a training curriculum. As a WHO initiative, it serves as a reference tool to be applied according to local priorities and needs within the different countries. This framework can assist institutions in strengthening IM capacity by hiring, staff development, and human resources planning.


Asunto(s)
COVID-19 , Infodemia , COVID-19/epidemiología , Curriculum , Humanos , Desarrollo de Personal , Organización Mundial de la Salud
4.
Arch Phys Med Rehabil ; 103(7): 1285-1293, 2022 07.
Artículo en Inglés | MEDLINE | ID: mdl-34922932

RESUMEN

OBJECTIVE: To analyze and compare life satisfaction (LS) in persons with spinal cord injury (SCI) living in 22 countries participating in the International Spinal Cord Injury (InSCI) community survey. The study tested the hypothesis that there are differences in LS across InSCI countries according to the countries' economic status specified as gross domestic product per capita purchased power parity (GDP-PPP). DESIGN: Cross-sectional survey. SETTING: Community setting (22 countries representing all 6 World Health Organization regions). PARTICIPANTS: Persons (N=12,108) with traumatic or nontraumatic SCI aged at least 18 years, living in the community and able to respond to one of the available language versions of the questionnaire. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: LS measured by 5 items selected from the World Health Organization Quality of Life Assessment-BREF: satisfaction with overall quality of life, health, daily activities, relationships, and living conditions. LS index was calculated as the mean of these 5 items. RESULTS: The highest level of LS was reported by persons with SCI living in the United States, Malaysia, and Switzerland (mean range, 3.76-3.80), and the lowest was reported by persons with SCI living in South Korea, Japan, and Morocco (mean range, 2.81-3.16). There was a significant cubic association between LS index and GDP-PPP. Regression tree analysis revealed the main variables differentiating LS index were GDP-PPP and monthly income, followed by time since injury and education. CONCLUSIONS: Life satisfaction reported by persons with SCI related mainly to their country economic situation expressed by GDP-PPP and monthly income. The results of this study underscore the need for policy dialogues to avoid inequalities and improve the life experience in persons with SCI.


Asunto(s)
Satisfacción Personal , Traumatismos de la Médula Espinal , Adolescente , Adulto , Estudios Transversales , Estatus Económico , Humanos , Calidad de Vida , Encuestas y Cuestionarios
5.
Spinal Cord ; 59(4): 452-461, 2021 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-33204032

RESUMEN

STUDY DESIGN: Observational study using data from the second community survey of the Swiss Spinal Cord Injury Cohort Study (Survey 2017). OBJECTIVES: To examine information seeking of individuals with spinal cord injury (SCI) in Switzerland and its association with personal characteristics, quality of life, satisfaction with health, and healthcare services utilization. SETTING: Community. METHODS: Descriptive statistics were used to describe information needs, information sources, and health literacy of the participants. Linear, logistic, and Poisson regression analyses were used to assess the association of information-related variables with personal characteristics, quality of life, satisfaction with health, and healthcare services utilization. RESULTS: One quarter of the 1294 study participants (24.6%) reported having information needs. Most frequently mentioned were needs for medical information about SCI, complications and comorbidities (30.5%), and information on living with SCI (28.6%). The most often used sources of information were healthcare professionals (72.3%), the Internet (43.2%), and other people living with SCI (40.8%). Almost half of the participants (41.4%) were only somewhat or not at all confident in their ability to find information. Having information needs was associated with suboptimal outcomes. CONCLUSIONS: This study confirms the importance of information for individuals living with SCI. By providing evidence on topics to be addressed and modalities of information delivery, our findings can help institutions in developing information to support individuals living with SCI in their daily activities. Information should cover all aspects of living with SCI, be relevant to and understandable for people of all backgrounds, and be made available online and offline.


Asunto(s)
Conducta en la Búsqueda de Información , Traumatismos de la Médula Espinal , Estudios de Cohortes , Estudios Transversales , Humanos , Calidad de Vida , Traumatismos de la Médula Espinal/epidemiología , Suiza/epidemiología
6.
Spinal Cord ; 59(5): 493-503, 2021 May.
Artículo en Inglés | MEDLINE | ID: mdl-33742117

RESUMEN

STUDY DESIGN: Qualitative exploratory study. OBJECTIVES: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. SETTING: Caregivers of people with SCI living in the community in Switzerland. METHODS: Data were collected through semi-structured interviews. Thematic analysis was performed. RESULTS: The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs. CONCLUSIONS: Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.


Asunto(s)
Traumatismos de la Médula Espinal , Adaptación Fisiológica , Cuidadores , Emociones , Femenino , Humanos , Persona de Mediana Edad , Investigación Cualitativa , Traumatismos de la Médula Espinal/terapia
7.
J Med Ethics ; 2020 Oct 14.
Artículo en Inglés | MEDLINE | ID: mdl-33055136

RESUMEN

Communicating an unfavourable prognosis while maintaining patient hope represents a critical challenge for healthcare professionals (HPs). Duty requires respect for the right to patient autonomy while at the same time not doing harm by causing hopelessness and demoralisation. In some cases, the need for therapeutic privilege is discussed. The primary objectives of this study were to explore HPs' perceptions of hope in the prognosis communication and investigate how they interpret and operationalise key ethical principles. Sixteen qualitative semistructured interviews with HPs from different positions and experience, including doctors and nurses in four different departments (intensive care, oncology, palliative care, rehabilitation), were conducted in the Ticino Cantonal Hospital, Switzerland. The interviews were recorded, transcribed verbatim and analysed using thematic analysis. HPs defined prognosis and patient hope as interdependent concepts related to future perspectives for subjective quality of life. Two main factors allow HPs to maximise the benefits and minimise the harm of their communication: respecting the patient's timing and sharing the patient's wishes. Time is required to reframe needs and expectations. Furthermore, communication needs to be shared by HPs, patients and their relatives to build common awareness and promote a person-centred approach to prognosis. In this process, interprofessional collaboration is key: doctors and nurses are complementary and can together guarantee that patients and relatives receive information in the most appropriate form when they need it. Organisational aspects and the HPs' emotional difficulties, particularly in coping with their own despair, are barriers to effective communication that need further investigation.

8.
Spinal Cord ; 58(8): 882-891, 2020 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-32103157

RESUMEN

STUDY DESIGN: Qualitative exploratory study. OBJECTIVES: Pressure injuries (PIs) are a major secondary condition occurring after spinal cord injuries (SCI). Optimization of outpatient and community care may be a promising approach to better support community-dwelling individuals with SCI in preventing PIs. The aim of this study was to examine the experiences of individuals with SCI, family caregivers and health professionals (HPs) in using or providing outpatient and community services for early treatment and prevention of PIs in SCI. SETTING: Switzerland. METHODS: Semi-structured interviews with a sample of Swiss residents community-dwelling individuals with SCI (n = 20), family caregivers (n = 5) and HPs (n = 22) were analysed using thematic analysis. RESULTS: General practitioners (GPs), home care providers, SCI-specialized outpatient clinics and an SCI-specialized nursing service are involved in the prevention and early treatment of PIs. Our findings show that the needs of individuals with SCI are not fully met: outpatient and community care is often fragmented, mono-professional and non-specialized, while persons with SCI and HPs prefer coordinated, inter-professional and specialized services for preventing and treating PIs. Our findings also highlight the challenges faced by HPs in providing care to individuals with SCI in the community. CONCLUSIONS: Although there seems to be a gap in service provision, there is the potential for improvement by better integrating the different providers in a network and structuring their collaborations. Concrete suggestions are: systematizing knowledge transfer to home care providers and GPs; redefining the role of involved HPs and individuals with SCI and reinforcing the role of the SCI-specialized nursing service.


Asunto(s)
Atención Ambulatoria/normas , Actitud del Personal de Salud , Servicios de Salud Comunitaria/normas , Prioridad del Paciente , Úlcera por Presión/terapia , Traumatismos de la Médula Espinal/terapia , Adulto , Cuidadores , Femenino , Humanos , Masculino , Persona de Mediana Edad , Úlcera por Presión/etiología , Úlcera por Presión/prevención & control , Investigación Cualitativa , Traumatismos de la Médula Espinal/complicaciones
9.
BMC Palliat Care ; 19(1): 47, 2020 Apr 13.
Artículo en Inglés | MEDLINE | ID: mdl-32284064

RESUMEN

BACKGROUND: Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with high-resource health systems, the nonfinancial and nonstructural obstacles to palliative care services are particularly prominent. These are the cognitive barriers -knowledge and communication barriers- to the use of palliative care. To date no systematic review has given the deserved attention to the cognitive barriers and facilitators to palliative care services utilization. This study aims to synthesize knowledge on cognitive barriers and facilitators to palliative care use in oncology and hemato-oncology from the experiences of health professionals, patients, and their families. METHODS: A systematic review was conducted. PubMed, PsycINFO, International Association for Hospice and Palliative Care/Cumulative Index of Nursing and Allied Health Literature (IAHPC/CINAHL), and Communication & Mass Media Complete (CMMC) were systematically searched for the main core concepts: palliative care, barriers, facilitators, perspectives, points of view, and related terms and synonyms. After screening of titles, abstracts, and full-texts, 52 studies were included in the qualitative thematic analysis. RESULTS: Four themes were identified: awareness of palliative care, collaboration and communication in palliative care-related settings, attitudes and beliefs towards palliative care, and emotions involved in disease pathways. The results showed that cognitive barriers and facilitators are involved in the educational, social, emotional, and cultural dimensions of palliative care provision and utilization. In particular, these barriers and facilitators exist both at the healthcare professional level (e.g. a barrier is lack of understanding of palliative care applicability, and a facilitator is strategic visibility of the palliative care team in patient floors and hospital-wide events) and at the patient and families level (e.g. a barrier is having misconceptions about palliative care, and a facilitator is patients' openness to their own needs). CONCLUSIONS: To optimize palliative care services utilization, awareness of palliative care, and healthcare professionals' communication and emotion management skills should be enhanced. Additionally, a cultural shift, concerning attitudes and beliefs towards palliative care, should be encouraged.


Asunto(s)
Familia/psicología , Personal de Salud/psicología , Cuidados Paliativos/normas , Aceptación de la Atención de Salud/psicología , Pacientes/psicología , Humanos , Neoplasias/complicaciones , Neoplasias/psicología , Neoplasias/terapia , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Investigación Cualitativa
10.
Spinal Cord ; 57(11): 924-932, 2019 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-31127196

RESUMEN

STUDY DESIGN: Cross-sectional survey. OBJECTIVE: The objective of this study is to identify what characteristics of the family caregivers influenced the use of professional home care for persons with SCI in Switzerland. SETTING: Community setting, nationwide in Switzerland. METHODS: Questionnaires were filled out by the adult family caregivers of persons with SCI. Influence of characteristics of the caregivers was analyzed with regression models, adjusting for the characteristics of the person with SCI. Logistic regression was used for whether professional home care was used. Poisson regression was applied for the absolute and relative amount of professional home care. RESULTS: In total, 717 family caregivers participated in the study (31% response rate). Among the participants, 33% hired professional home care for 10 h per week on average. The level of dependency of the persons with SCI had a significant influence on the utilization of care. The availability and proximity of the primary family caregiver, namely being spouse and cohabiting, reduced the amount of services used, whereas caregivers who worked full time employed more services. Higher levels of education and income increased the use of professional home care. Compared with their reference groups, caregivers with older age and those with a migratory background used comparable or larger absolute amount of professional services, which, however, represented a smaller proportion of total hours of care. CONCLUSIONS: Adequate support requires consideration of the characteristics of both the caregiver and of the person with SCI. The needs of family caregivers should also be assessed systematically in the needs assessment.


Asunto(s)
Cuidadores/psicología , Personal de Salud/psicología , Servicios de Atención de Salud a Domicilio , Traumatismos de la Médula Espinal/psicología , Traumatismos de la Médula Espinal/terapia , Encuestas y Cuestionarios , Adulto , Anciano , Cuidadores/tendencias , Estudios Transversales , Femenino , Personal de Salud/tendencias , Servicios de Atención de Salud a Domicilio/tendencias , Humanos , Masculino , Persona de Mediana Edad , Traumatismos de la Médula Espinal/epidemiología , Suiza/epidemiología
12.
BMC Health Serv Res ; 17(1): 443, 2017 06 26.
Artículo en Inglés | MEDLINE | ID: mdl-28651583

RESUMEN

BACKGROUND: The admission process of patients to a hospital is the starting point for inpatient services. In order to optimize the quality of the health services provision, one needs a good understanding of the patient admission workflow in a clinic. The aim of this study was to identify challenges and potential improvements in the admission process of spinal cord injury patients at a specialized rehabilitation clinic from the perspective of an interdisciplinary team of health professionals. METHODS: Semi-structured interviews with eight health professionals (medical doctors, physical therapists, occupational therapists, nurses) at the Swiss Paraplegic Centre (acute and rehabilitation clinic) were conducted based on a maximum variety purposive sampling strategy. The interviews were analyzed using a thematic analysis approach. RESULTS: The interviewees described the challenges and potential improvements in this admission process, focusing on five themes. First, the characteristics of the patient with his/her health condition and personality and his/her family influence different areas in the admission process. Improvements in the exchange of information between the hospital and the patient could speed up and simplify the admission process. In addition, challenges and potential improvements were found concerning the rehabilitation planning, the organization of the admission process and the interdisciplinary work. CONCLUSION: This study identified five themes of challenges and potential improvements in the admission process of spinal cord injury patients at a specialized rehabilitation clinic. When planning adaptations of process steps in one of the areas, awareness of effects in other fields is necessary. Improved pre-admission information would be a first important step to optimize the admission process. A common IT-system providing an interdisciplinary overview and possibilities for interdisciplinary exchange would support the management of the admission process. Managers of other hospitals can supplement the results of this study with their own process analyses, to improve their own patient admission processes.


Asunto(s)
Actitud del Personal de Salud , Admisión del Paciente , Centros de Rehabilitación/organización & administración , Traumatismos de la Médula Espinal/rehabilitación , Humanos , Entrevistas como Asunto , Enfermeras y Enfermeros , Grupo de Atención al Paciente , Fisioterapeutas , Médicos , Investigación Cualitativa
13.
J Med Internet Res ; 19(10): e320, 2017 10 10.
Artículo en Inglés | MEDLINE | ID: mdl-29017993

RESUMEN

BACKGROUND: The use of online communities to promote end user involvement and co-creation in the product and service innovation process is well documented in the marketing and management literature. Whereas online communities are widely used for health care service provision and peer-to-peer support, only little is known about how they could be integrated into the health care innovation process. OBJECTIVE: The overall objective of this qualitative study was to explore community managers' views on and experiences with knowledge co-creation in online communities for people with disabilities. METHODS: A descriptive qualitative research design was used. Data were collected through semi-structured interviews with nine community managers. To complement the interview data, additional information was retrieved from the communities in the form of structural information (number of registered users, number and names of topic areas covered by the forum) and administrative information (terms and conditions and privacy statements, forum rules). Data were analyzed using thematic analysis. RESULTS: Our results highlight two main aspects: peer-to-peer knowledge co-creation and types of collaboration with external actors. Although community managers strongly encouraged peer-to-peer knowledge co-creation, our findings indicated that these activities were not common practice in the communities under investigation. In fact, much of what related to co-creation, prototyping, and product development was still perceived to be directed by professionals and experts. Community managers described the role of their respective communities as informing this process rather than a driving force. The role of community members as advisors to researchers, health care professionals, and businesses was discussed in the context of types of collaboration with external actors. According to the community managers, most of the external inquiries related to research projects of students or health care professionals in training, who often joined a community for the sole purpose of recruiting participants for their research. Despite this unilateral form of knowledge co-creation, community managers acknowledged the mere interest of these user groups as beneficial, as long as their interest was not purely financially motivated. Being able to contribute to advancing research, improving products, and informing the planning and design of health care services were described as some of the key motivations to engage with external stakeholders. CONCLUSIONS: This paper draws attention to the currently under-investigated role of online communities as platforms for collaboration and co-creation between patients, health care professionals, researchers, and businesses. It describes community managers' views on and experiences with knowledge co-creation and provides recommendations on how these activities can be leveraged to foster knowledge co-creation in health care. Engaging in knowledge co-creation with online health communities may ultimately help to inform the planning and design of products, services, and research activities that better meet the actual needs of those living with a disability.


Asunto(s)
Redes Comunitarias/estadística & datos numéricos , Personas con Discapacidad/rehabilitación , Educación a Distancia/métodos , Atención Dirigida al Paciente/métodos , Telemedicina/métodos , Femenino , Humanos , Masculino , Investigación Cualitativa
14.
J Med Internet Res ; 17(12): e279, 2015 Dec 14.
Artículo en Inglés | MEDLINE | ID: mdl-26677835

RESUMEN

BACKGROUND: Direct-to-consumer genetic tests (DTC-GT) are easily purchased through the Internet, independent of a physician referral or approval for testing, allowing the retrieval of genetic information outside the clinical context. There is a broad debate about the testing validity, their impact on individuals, and what people know and perceive about them. OBJECTIVE: The aim of this review was to collect evidence on DTC-GT from a comprehensive perspective that unravels the complexity of the phenomenon. METHODS: A systematic search was carried out through PubMed, Web of Knowledge, and Embase, in addition to Google Scholar according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist with the key term "Direct-to-consumer genetic test." RESULTS: In the final sample, 118 articles were identified. Articles were summarized in five categories according to their focus on (1) knowledge of, attitude toward use of, and perception of DTC-GT (n=37), (2) the impact of genetic risk information on users (n=37), (3) the opinion of health professionals (n=20), (4) the content of websites selling DTC-GT (n=16), and (5) the scientific evidence and clinical utility of the tests (n=14). Most of the articles analyzed the attitude, knowledge, and perception of DTC-GT, highlighting an interest in using DTC-GT, along with the need for a health care professional to help interpret the results. The articles investigating the content analysis of the websites selling these tests are in agreement that the information provided by the companies about genetic testing is not completely comprehensive for the consumer. Given that risk information can modify consumers' health behavior, there are surprisingly few studies carried out on actual consumers and they do not confirm the overall concerns on the possible impact of DTC-GT. Data from studies that investigate the quality of the tests offered confirm that they are not informative, have little predictive power, and do not measure genetic risk appropriately. CONCLUSIONS: The impact of DTC-GT on consumers' health perceptions and behaviors is an emerging concern. However, negative effects on consumers or health benefits have yet to be observed. Nevertheless, since the online market of DTC-GT is expected to grow, it is important to remain aware of a possible impact.


Asunto(s)
Pruebas Dirigidas al Consumidor/métodos , Pruebas Genéticas/métodos , Internet/estadística & datos numéricos , Adulto , Humanos , Masculino
15.
BMC Med Educ ; 15: 89, 2015 May 19.
Artículo en Inglés | MEDLINE | ID: mdl-25986603

RESUMEN

BACKGROUND: Shared decision-making requires doctors to be competent in exchanging views with patients to identify the appropriate course of action. In this paper we focus on the potential of a course in argumentation as a promising way to empower doctors in presenting their viewpoints and addressing those of patients. Argumentation is the communication process in which the speaker, through the use of reasons, aims to convince the interlocutor of the acceptability of a viewpoint. The value of argumentation skills for doctors has been addressed in the literature. Yet, there is no research on what a course on argumentation might look like. In this paper, we present the content and format of a training session in argumentation for doctors and discuss some insights gained from a pilot study that examined doctors' perceived strengths and limitations vis-à-vis this training. METHODS: The training session (eight hours) combined different aspects from prominent theories of argumentation and was designed to strengthen doctors' argumentative discussion skills. A convenient, self-selected sample of 17 doctors who were experts in the field of chronic pain participated in the training and evaluated it via a feedback form and semi-structured interviews. RESULTS: The participants found that the training session gave a structure to types of communication they use to interact with their patients, and taught them techniques that can increase their effectiveness. Moreover, it provided tools to help address some of the challenges of modern doctor-patient interactions, including dealing with patients' unrealistic expectations and medically inaccurate beliefs, and reaching agreement when there are differences of opinion. CONCLUSIONS: This study enriches the research in the field of medical education. In line with the findings of studies that explore the value of argumentation in different fields, argumentative discussion skills can be applied by doctors to express their views and to account for the views of patients without patronizing the interaction. In this paper, we provide a basis to reflect on the value of argumentation in enhancing patients' right to autonomy and self-determination in interactions with their doctors.


Asunto(s)
Dolor Crónico/terapia , Comunicación , Curriculum , Educación Médica Continua/métodos , Relaciones Médico-Paciente , Humanos , Proyectos Piloto
16.
Patient Educ Couns ; 122: 108168, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38301598

RESUMEN

OBJECTIVE: To explore approaches for developing and implementing interventions aimed at improving health literacy and health-related scientific literacy in disadvantaged groups. METHODS: A scoping review of literature published in 2012-2022 was conducted, followed by quality appraisal of eligible studies. RESULTS: Interventions were conducted mainly in community settings, where the most popular venues were adult education facilities. The primary target groups were those with limited income or education, ethnic minorities, or immigrants. Programs were often held in-person using interactive and culturally appropriate methods. They were predominantly focused on functional and interactive health literacy dimensions rather than on critical and scientific ones. Evaluations measured knowledge, health literacy, behavioral and psychological outcomes using various quantitative and qualitative instruments. CONCLUSIONS: The findings offer a comprehensive overview of the ways to design and evaluate health and scientific literacy interventions tailored to disadvantaged groups. PRACTICE IMPLICATIONS: Future interventions should prioritize participatory designs, culturally appropriate materials, and shift focus to critical and scientific health literacy, as well as to program scalability in less controlled conditions.


Asunto(s)
Emigrantes e Inmigrantes , Alfabetización en Salud , Adulto , Humanos , Alfabetización en Salud/métodos , Poblaciones Vulnerables , Conocimiento
17.
Int J Public Health ; 68: 1605982, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37408794

RESUMEN

Objectives: This study aimed to advance the understanding of the factors associated with population acceptance of public health measures during the COVID-19 pandemic. Methods: In January 2022, we conducted a cross-sectional survey of the Swiss population (N = 2,587). Questionnaires were administered through computer-assisted web interviewing. Measures covered included information-seeking behavior, attitudes towards and beliefs about public health measures enacted, and trust in institutions. Results: Television and newspapers were the most used information sources. Those with higher education levels were more likely to use channels from public institutions, newspapers, and television. The most important criterion for reliable information was scientific evidence. Trust was highest for doctors, healthcare workers, universities, research institutes, and public health institutions. Acceptance of public health measures was high overall, and attitudes, beliefs, information-seeking behavior, and trust were positively related to acceptance. Trust in science remained stable, while trust in public health institutions decreased slightly. Conclusion: While nurturing a two-way dialogue with the population, institutions should target communication considering age and culture, improve risk communication, ground messages in scientific evidence, and ensure mass media presence.


Asunto(s)
COVID-19 , Humanos , COVID-19/epidemiología , Estudios Transversales , Confianza , Conducta en la Búsqueda de Información , Salud Pública , Pandemias , Suiza/epidemiología , Actitud , Encuestas y Cuestionarios
18.
Health Policy ; 135: 104866, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-37421891

RESUMEN

Rehabilitation uses a person-centred approach that relies on dynamic case management and works across sectors, including social protection, labour, and education to improve individual functioning. Global population ageing means that more people will live with impairment in functioning. Responding to this growth in impairment will require countries to strengthen rehabilitation at all levels of their health systems as highlighted by the 2023 WHO Resolution on Rehabilitation. Efforts to strengthen rehabilitation can benefit from the concept of the Learning Health System, which implies a cyclical process of identifying issues, developing and implementing responses, monitoring the consequences of systems' change, and revising the response. However, we argue that it is not enough to simply adopt the notion of the Learning Health System for strengthening rehabilitation. We should rather think of a Learning Rehabilitation System. This is because rehabilitation is an intrinsically inter-sectoral strategy given its focus on people's functioning in their daily lives. Therefore, we believe that introducing the notion of the Learning Rehabilitation System is more than a terminological change; it is a fundamental programmatic shift that can contribute towards the goal of strengthening rehabilitation as an intersectoral strategy to improve functioning of an ageing population.


Asunto(s)
Personas con Discapacidad , Medicina , Humanos , Envejecimiento , Personas con Discapacidad/rehabilitación , Evaluación de la Discapacidad
19.
Patient Educ Couns ; 115: 107879, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37413808

RESUMEN

OBJECTIVE: The aim of this study was to systematically review and synthesize the literature on patients' perceptions of hope in palliative care. METHODS: PubMed, Scopus, SocINDEX, Cochrane, and Web of Science were screened against the eligibility criteria. After familiarization with the data and conduction of the coding process, studies were thematically analyzed using Braun and Clarke's methodology. The research question guiding our analysis was: what is said about hope from patients in PC? RESULTS: The database searches yielded 24 eligible studies. Three main themes emerged from the studies: Hope beliefs (encompassing patients' understanding of hope and characteristics assigned to it), Hope functions (including the role that hope plays for patients) and Hope work (highlighting aspects that in patients' perspective cultivate hope). CONCLUSION: This review emphasizes the importance of acknowledging patients' understanding of hope, its role, and the efforts required to sustain it. In particular, it suggests that hope serves as a valuable strategy, fostering meaningful personal relationships towards end of life. PRACTICE IMPLICATIONS: In order to address communication challenges in clinical practice, a potential fruitful strategy for nurturing hope could involve engaging family and friends in hope interventions facilitated by healthcare professionals.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Humanos , Pacientes , Narración , Percepción
20.
Patient Educ Couns ; 114: 107813, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37247524

RESUMEN

OBJECTIVES: To identify the main challenges in public communication encountered by representatives in Swiss health institutions during the first two waves of the COVID-19 pandemic. METHODS: In-depth qualitative interviews were conducted with representatives of key public health institutions (N = 25) across Switzerland. Participants were asked to identify barriers, facilitators, problems, and solutions in their public communication. The interviews were analyzed thematically. RESULTS: Swiss institutional communication faced internal challenges (e.g., lack of human resources and training, rigid organizational structure), external challenges related to the public (e.g., low health and scientific literacy, low levels of trust), and environmental challenges related to the broader context (e.g., infodemics). At the same time, institutions developed best practices to foster collaboration, promote transparency, and address misinformation. CONCLUSION: Health organizations need a cultural shift to account for the increasing complexity of crisis communication. Their awareness of the importance of communication should match the implementation of enhanced dedicated infrastructures and processes. PRACTICE IMPLICATIONS: Institutions need mechanisms allowing innovation and adaptation to prepare for future pandemics. Emphasis should be placed on training communication professionals who can design, develop, deliver, and evaluate texts that meet the information needs of the public, enhance health and scientific literacy, and counter mis/disinformation.


Asunto(s)
COVID-19 , Humanos , COVID-19/epidemiología , Salud Pública , Pandemias , Suiza , Comunicación
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