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1.
JMIR Form Res ; 8: e46941, 2024 Jan 24.
Artigo em Inglês | MEDLINE | ID: mdl-38265857

RESUMO

BACKGROUND: Informal caregivers of people with dementia are at high risk of developing mental and physical distress because of the intensity of the care provided. iSupport is an evidence-based digital program developed by the World Health Organization to provide education and support for the informal everyday care of people living with dementia. OBJECTIVE: Our study aims to describe in detail the cultural adaptation process of iSupport in Switzerland. We specifically focused on the participatory strategies we used to design a culturally adapted, Swiss version of iSupport that informed the development of the desktop version, mobile app, and printed manual. METHODS: We used a mixed methods design, with a community-based participatory approach. The adaptation of iSupport followed the World Health Organization adaptation guidelines and was developed in 4 phases: content translation, linguistic and cultural revision by the members of the community advisory board, validation with formal and informal caregivers, and refinement and final adaptation. RESULTS: The findings from each phase showed and consolidated the adjustments needed for a culturally adapted, Swiss version of iSupport. We collected feedback and implemented changes related to the following areas: language register and expressions (eg, from "lesson" to "chapter" and from "suffering from" dementia to "affected by" dementia), resources (hyperlinks to local resources for dementia), contents (eg, from general nonfamiliar scenarios to local and verisimilar examples), graphics (eg, from generalized illustrations of objects to human illustrations), and extra features (eg, a glossary, a forum session, and a read-aloud option, as well as a navigation survey). CONCLUSIONS: Our study provides evidence on how to culturally adapt a digital program for informal caregivers of people living with dementia. Our results suggest that adopting a community-based participatory approach and collecting lived experiences from the final users and stakeholders is crucial to meet local needs and to inform the further development, testing, and implementation of digital interventions in a specific cultural context.

2.
Brain Behav Immun Health ; 35: 100701, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38107020

RESUMO

Background: COVID-19 patients can report 'brain fog' and may exhibit cognitive symptoms for months after recovery (Cognitive COVID). However, evidence on whether and the extent to which SARS-CoV-2 infection impacts cognition irrespective of COVID-19 course and severity is limited to clinical samples and mainly comes from prognostic studies. We aimed to explore the association between serologically confirmed SARS-CoV-2 infection and cognitive functioning in community-based and institutionalized older adults, irrespective of COVID-19 symptoms. Methods: We conducted a case-control study nested into two cohorts in Southern Switzerland. Eligible subjects were Italian speaking older adults, without a previous diagnosis of dementia, who underwent serological testing for anti-SARS-CoV-2 antibodies between November 2020 and July 2021. We manually selected age-, sex- and education-matched cases (i.e., individuals with a serologically confirmed SARS-CoV-2 infection), with seronegative controls, and we conducted in-person neuropsychological assessments using validated, highly sensitive cognitive tests. Results: We completed 38 neuropsychological assessments in a mostly female sample of older adults (Mean age: 83.13 ± 8.95; 86.8% women). 17 were community dwelling individuals while 21 lived in a nursing home. As expected, socio-demographic characteristics of age, gender and educational level were similarly distributed between cases (n = 14) and controls (n = 24). In linear regression models, cases had significantly lower scores in cognitive tasks of memory (ß = -0.367, p = 0.023), attention (ß = 0.428, p = 0.008) and executive functions (ß = 0.326, p = 0.046). We found no significant difference in tests of language and spatial-temporal orientation (all p values > 0.05). Conclusions: SARS-CoV-2 infection was associated with cognitive impairment in memory, attention, and executive functions in older adults. Our findings are consistent with mechanistic evidence of the neurotropism of the virus and provide empirical support for the "Cognitive COVID" construct also in non-clinical samples. With nearly 800 million COVID-19 cases (in April 2023), and many more infections worldwide, the clinical and public health implications of Cognitive COVID due to SARS-CoV-2 infection may be massive and warrant further epidemiological investigations.

3.
BMC Geriatr ; 23(1): 629, 2023 10 06.
Artigo em Inglês | MEDLINE | ID: mdl-37803260

RESUMO

BACKGROUND: We explored whether number of languages spoken and language proficiency are associated with cognitive performance among older adults living in the community and in long-term care (LTC) in Switzerland. METHODS: Among study participants, 664 lived in the community in the Canton of Zurich (Mean age = 72.97 years; SD = 6.08), 386 lived in the community in Ticino (Mean age = 76.24 years; SD = 6.66), and 176 resided in LTC in Ticino (Mean age = 87.61 years; SD = 6.45). We recorded sociodemographic variables, number of languages spoken, language proficiency, and assessed overall cognitive performance, immediate and delayed memory, and verbal fluency with standardized tests. We used adjusted regression models. RESULTS: A higher number of spoken languages was positively associated with overall cognitive performance, verbal fluency and immediate and delayed memory performance in community-dwelling older adults in the Cantons of Ticino and Zurich, (all p values ≤ 0.012;), but not in in older adults living in LTC homes (all p values ≥ 0.35). Higher language proficiency was associated with better memory performance among individuals living in the community in Ticino (p value = 0.003), and to better performance in verbal fluency and memory tasks in Zurich (p values ≤ 0.002). Among LTC residents, proficiency levels were not associated with cognitive performance. CONCLUSIONS: Multilingualism and greater language proficiency were associated with better cognitive functioning in community-dwelling but not in institutionalized older adults. Multilingualism may contribute to cognitive reserve, as well as protect and delay cognitive decline in late life.


Assuntos
Multilinguismo , Humanos , Idoso , Idoso de 80 Anos ou mais , Vida Independente , Assistência de Longa Duração , Idioma , Cognição , Testes Neuropsicológicos
4.
Front Public Health ; 11: 1183838, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37727612

RESUMO

Objectives: We aimed to develop and test the feasibility of a critical health literacy (CHL) and science literacy (SL) training course targeting secondary school students in Switzerland. Methods: Using a community-based participatory approach, we developed a two-block training program, the first centered on argumentation skills and the second on scientific skills. We combined an ex-cathedra and a flipped-classroom approach, providing students with a deep understanding of CHL and SL concepts and the translational capability of implementing theoretical notions to real case scenarios. The feasibility study was designed as a one-group pretest-posttest quasi-experiment. Beyond socio-demographics, questionnaires included measures of CHL, SL, trust in science, and perceived quality of the course. Results: The curriculum was feasible and well-accepted by the target groups, teachers, and students. Students convincingly specified their perceived personal benefits associated with a positive change in CHL and SL scores after the training course. Conclusion: Training CHL and SL in secondary school students is feasible and can improve their competencies. Results from present study can inform a large-scale study.


Assuntos
Letramento em Saúde , Adolescente , Humanos , Estudos de Viabilidade , Suíça , Estudantes , Participação da Comunidade
5.
Int J Public Health ; 68: 1605982, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37408794

RESUMO

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.


Assuntos
COVID-19 , Humanos , COVID-19/epidemiologia , Estudos Transversais , Confiança , Comportamento de Busca de Informação , Saúde Pública , Pandemias , Suíça/epidemiologia , Atitude , Inquéritos e Questionários
6.
Patient Educ Couns ; 114: 107813, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37247524

RESUMO

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.


Assuntos
COVID-19 , Humanos , COVID-19/epidemiologia , Saúde Pública , Pandemias , Suíça , Comunicação
7.
Artigo em Inglês | MEDLINE | ID: mdl-36834397

RESUMO

OBJECTIVES: The COVID-19 pandemic continues, and evidence on infection- and vaccine-induced immunity is key. We assessed COVID-19 immunity and the neutralizing antibody response to virus variants across age groups in the Swiss population. STUDY DESIGN: We conducted a cohort study in representative community-dwelling residents aged five years or older in southern Switzerland (total population 353,343), and we collected blood samples in July 2020 (in adults only, N = 646), November-December 2020 (N = 1457), and June-July 2021 (N = 885). METHODS: We used a previously validated Luminex assay to measure antibodies targeting the spike (S) and the nucleocapsid (N) proteins of the virus and a high-throughput cell-free neutralization assay optimized for multiple spike protein variants. We calculated seroprevalence with a Bayesian logistic regression model accounting for the population's sociodemographic structure and the test performance, and we compared the neutralizing activity between vaccinated and convalescent participants across virus variants. RESULTS: The overall seroprevalence was 7.8% (95% CI: 5.4-10.4) by July 2020 and 20.2% (16.4-24.4) by December 2020. By July 2021, the overall seroprevalence increased substantially to 72.5% (69.1-76.4), with the highest estimates of 95.6% (92.8-97.8) among older adults, who developed up to 10.3 more antibodies via vaccination than after infection compared to 3.7 times more in adults. The neutralizing activity was significantly higher for vaccine-induced than infection-induced antibodies for all virus variants (all p values < 0.037). CONCLUSIONS: Vaccination chiefly contributed to the reduction in immunonaive individuals, particularly those in older age groups. Our findings on the greater neutralizing activity of vaccine-induced antibodies than infection-induced antibodies are greatly informative for future vaccination campaigns.


Assuntos
COVID-19 , SARS-CoV-2 , Humanos , Idoso , Suíça , Teorema de Bayes , Estudos de Coortes , Pandemias , Estudos Prospectivos , Estudos Soroepidemiológicos , Anticorpos Neutralizantes , Anticorpos Antivirais
8.
Front Psychiatry ; 13: 963703, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36506437

RESUMO

Background: Subjective cognitive decline (SCD) and subjective memory decline (SMD) are common among older people. Evidence linking SCD and SMD with cognitive and memory impairment is inconsistent. Moreover, little is known about the associations of SCD and SMD with disability. We aimed to explore the associations of SCD and SMD with objective cognitive and memory performance, disability, and depressive symptoms. Materials and methods: In a cross-sectional study we conducted face to face interviews in a randomized sample of people aged ≥65 years living in the Canton of Ticino, southern Switzerland, between May 2021 and April 2022. We measured subjective cognitive decline with the MyCog, a subsection of the Subjective Cognitive Decline Questionnaire (SCD-Q); cognitive functioning with the Community Screening Instrument for Dementia; memory with the consortium to establish a registry for alzheimer's disease (CERAD) 10-word list learning task; and disability and depressive symptoms with the world health organization disability assessment schedule 2.0 (WHO-DAS 2.0) and the Euro-Depression (EURO-D) scales, respectively. Results: Of the 250 participants 93.6% reported at least one cognitive difficulty, and 40.0% SMD. Both SCD and SMD were associated with poorer objective cognitive/memory performance, and independently with greater disability, and more depressive symptoms. But in participants with high disability and depressive symptoms subjective and objective cognition were no longer associated. Disability fully mediated the associations of poorer objective cognitive and memory performance with subjective cognitive and memory decline. Conclusion: Routine clinical assessments of cognitive function should include formal enquires about SCD and SMD, and also account for disability and depressive symptoms.

9.
BMC Public Health ; 22(1): 2176, 2022 11 25.
Artigo em Inglês | MEDLINE | ID: mdl-36434540

RESUMO

BACKGROUND: Increasing public awareness and understanding of dementia is the second key action area of the 2017 WHO Global action plan on a public health response to dementia. To achieve this aim, the first indispensable step is to understand the average level of dementia knowledge and to identify areas of low dementia knowledge. We aimed to quantify dementia knowledge in the general population, and to explore the extent to which it differs by age, sex, education, and indirect experience with dementia. METHODS: We conducted an online cross-sectional survey in two Italian-speaking sites, south Switzerland (Ticino) and northern Italy (Piedmont). The survey was distributed between September and December 2019. We registered socio-demographic characteristics including whether the participant had contact with a person living with dementia, and measured dementia knowledge with the Dementia Knowledge Assessment Survey (DKAS). RESULTS: Misconceptions about dementia were common among respondents, and lack of knowledge has been identified in dementia causes, characteristics, risk factors, and health promotion. Our results point out the lack of knowledge about how to communicate and relate with, and take care of a person living with dementia. The overall DKAS score was significantly and positively associated with female sex (ß = 0.21; p < 0.001), educational level (ß = 0.15; p < 0.001) and contact with a person living with dementia (ß = 0.17; p < 0.001), but not with age (ß = -0.01; p = 0.57). CONCLUSION: Our results confirmed that general population's knowledge of dementia is thin. Interventional studies that rely on participatory action research methods are warranted to co-design interventions aimed at improving dementia knowledge and understanding in the public.


Assuntos
Envelhecimento , Demência , Humanos , Feminino , Adulto Jovem , Idoso , Estudos Transversais , Suíça/epidemiologia , Itália , Demência/epidemiologia , Demência/terapia
10.
SSM Qual Res Health ; 2: 100181, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36267682

RESUMO

In January 2021, the Swiss government introduced the first COVID-19 vaccines and prioritized allocation to at-risk individuals and professionals working with them. Despite this opportunity, vaccine uptake among staff employed in retirement homes and institutes for people with disabilities was suboptimal. This study aimed to capture real-time decision-making about COVID-19 vaccine among staff employed in nursing homes and institutes for people with disabilities in Southern Switzerland. We conducted semi-structured phone-interviews with 25 staff employed in retirement homes and institutes for people with disabilities between February and May 2021, i.e., when participants had to decide whether they wanted to adhere to the priority vaccination programme. Among participants, 21 either signed up for the COVID-19 vaccination or were fully or partly vaccinated at the time of the interview. For most participants, the vaccination choice was a challenging process: information appeared to be lacking and conflicting; numerous moral principles were at stake and contradictory; the way vaccination was organized clashed with the health values to which respondents had been previously exposed; finally, the fear of discrimination for those who decided not to get vaccinated loomed over the vaccination choice. Participants decided for or against vaccination based on principles, traditions, emotions, and a reflexive assessment of the personal vs. collective benefit of the vaccination, the latter being the most common within the investigated sample. This study shows that deciding to get vaccinated against COVID-19 is a nuanced process and that individuals cannot simply be categorized as "novax" or "provax" based on their vaccination decision.

11.
Artigo em Inglês | MEDLINE | ID: mdl-35742751

RESUMO

Supportive measures and training interventions can improve the care of people with dementia and reduce the burden on informal caregivers, whose needs remain largely unmet. iSupport is an evidence-based online intervention developed by the World Health Organization to provide support and self-guided education to informal family caregivers of people with dementia. This qualitative study explored barriers and facilitators in the access and use of supportive measures for family caregivers of people with dementia living in Southern Switzerland (Ticino). We conducted five focus groups and explored experiences, beliefs, and attitudes toward seeking help (SH), and used thematic analysis to identify key themes. Participants (N = 13) reported a general reluctance to SH. We identified four main barriers to SH: high level of burden; sense of duty; fear of being misunderstood by others; and difficulty in reaching information. We also identified facilitators of help seeking behaviors and unveiled the need of caregivers to be assisted by a dementia case manager to facilitate access to support resources. Local services and interventions should be adapted to caregivers' needs and expectations, with the aim of facilitating the acceptance of, access to, and service integration of existing and future support measures, including iSupport.


Assuntos
Cuidadores , Demência , Demência/terapia , Emoções , Grupos Focais , Humanos , Pesquisa Qualitativa
12.
Int J Public Health ; 67: 1604226, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35418817

RESUMO

Objectives: This study examined factors associated with COVID-19 vaccination intention at the very beginning of the vaccination campaign in a representative sample of the population in southern Switzerland. Methods: In March 2021, we measured vaccination intention, beliefs, attitudes, and trust in a sample of the Corona Immunitas Ticino study. Results: Of the 2681 participants, 1933 completed the questionnaire (response rate = 72%; 55% female; meanage = 41, SD = 24, rangeage = 5-91). Overall, 68% reported an intention to get vaccinated. Vaccination intention was higher in social/healthcare workers, and increased with age, trust in public health institutions, and confidence in the vaccine efficacy. Prior infection of a family member, predilection for waiting for more evidence on the safety and efficacy of the vaccine, and for alternative protective means were negatively associated with intention. Conclusion: In view of needs of COVID-19 vaccine boosters and of suboptimal vaccination coverage, our results have relevant public health implications and suggest that communication about vaccine safety and efficacy, and aims of vaccination programs, should be bi-directional, proportionate, and tailored to the concerns, expectations, and beliefs of different population subgroups.


Assuntos
Vacinas contra COVID-19 , COVID-19 , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , COVID-19/epidemiologia , COVID-19/prevenção & controle , Vacinas contra COVID-19/uso terapêutico , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Intenção , Masculino , Pessoa de Meia-Idade , SARS-CoV-2 , Suíça , Vacinação , Adulto Jovem
13.
BMC Geriatr ; 22(1): 56, 2022 01 16.
Artigo em Inglês | MEDLINE | ID: mdl-35034607

RESUMO

BACKGROUND: There is sparse evidence on the impact on vulnerable populations of the COVID-19 pandemic. The aim of our study was to explore burden and mental wellbeing (including depressive, anxiety, and stress symptoms) in caregivers of people with dementia during the first wave of the pandemic in Italy and southern Switzerland, two bordering regions severely hit by the COVID-19 pandemic. METHODS: We conducted an online cross-sectional survey with family carers of people with dementia between May and June 2020. We registered socio-demographic characteristics, and information about the relationship with the care recipient, dementia subtype, care inputs from others, and the need of care of the person with dementia. We measured caregiver burden with the Zarit Burden Interview (ZBI), psychological distress with the Depression, Anxiety and Stress Scale (DASS-21), and perceived isolation with the 3-item UCLA Loneliness Scale (UCLALS3). RESULTS: Caregivers (N =571) reported moderate to severe care-related burden (mean=54.30; SD=18.33), moderate anxiety symptoms (mean=10.04; SD=6.93), mild depressive symptoms (mean=11.79; SD=6.12) and mild stress (mean=12.95; SD=5.53), and 72.3% of participants reported to feel lonely. All scores were significantly more severe in Swiss compared to Italian caregivers (all p values<0.001). CONCLUSIONS: We found that caregivers' burden, anxiety symptoms, depression and perceived loneliness were marked during the first wave of the COVID-19 pandemic, in two severely hit bordering countries. Regional differences in the impact of the epidemic on caregivers could be due to contextual, societal, and cultural circumstances. As the pandemic endures, support to caregivers of people with dementia should be proportionate and tailored to needs and adapted to contextual factors.


Assuntos
COVID-19 , Demência , Cuidadores , Estudos Transversais , Demência/diagnóstico , Demência/epidemiologia , Depressão/diagnóstico , Depressão/epidemiologia , Humanos , Saúde Mental , Pandemias , SARS-CoV-2 , Inquéritos e Questionários
14.
Disabil Rehabil ; 44(2): 243-252, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-32449426

RESUMO

PURPOSE: To identify the coping strategies used by family caregivers of persons with spinal cord injury (SCI) in Switzerland in order to develop tailored support programs. MATERIALS AND METHODS: Purposive sample of >18 years participants, speaking an official Swiss language fluently, being family caregivers of persons with SCI for at least 4 years, and perceiving either a high or low burden in relation to caregiving. Data were collected through face-to-face semi-structured interviews (N = 22). Thematic analysis was performed. RESULTS: Four main coping strategies were identified: reappraisal, active acceptance, setting limits to the caregiver role, and seeking support. These strategies can be used one at a time or combined, and at different times of a caregiver pathway. Our analysis highlighted that caregivers need skills to implement these strategies (e.g., self-evaluation skills). CONCLUSIONS: Caregivers of persons with SCI develop cognitive coping strategies to make sense of the situation and establish a "new normal" and problem-focused coping strategies to deal with their new tasks and role. These strategies do not seem to be typical only of SCI caregivers. Hence, interventions that worked for caregivers in other fields could be adapted. Rehabilitation centers should systematically integrate programs targeted to caregivers into their offerings.IMPLICATIONS FOR REHABILITATIONHealthcare systems need to develop educational and support measures for both persons with a health condition and their caregivers.Caregivers should become long-term partners in rehabilitation and a regular and structured needs assessment should be offered.Interventions that worked for caregivers in other fields can be adapted to support also caregivers in SCI.Educational and support programs dedicated to caregivers should teach not only how to perform caregiving tasks but also how to balance between responding to the care recipient's needs and their own needs.


Assuntos
Cuidadores , Traumatismos da Medula Espinal , Adaptação Psicológica , Cuidadores/psicologia , Família/psicologia , Humanos , Pesquisa Qualitativa , Centros de Reabilitação , Traumatismos da Medula Espinal/reabilitação
15.
Artigo em Inglês | MEDLINE | ID: mdl-34201894

RESUMO

The overload of health information has been a major challenge during the COVID-19 pandemic. Public health authorities play a primary role in managing this information. However, individuals have to apply critical health literacy to evaluate it. The objective of this paper is to identify targets for strengthening critical health literacy by focusing on the field of argumentation theory. This paper is based on the textual analysis of instances of health information through the lens of argumentation theory. The results show that critical health literacy benefits from: (1) understanding the concept of argument and the supporting reasons, (2) identifying the main argument schemes, and (3) the knowledge and use of the main critical questions to check the soundness of arguments. This study operationalizes the main aspects of critical health literacy. It calls for specific educational and training initiatives in the field. Moreover, it argues in favor of broadening the current educational curricula to empower individuals to engage in informed and quality decision making. Strengthening individuals' critical health literacy involves interventions to empower in argument evaluation. For this purpose, argumentation theory has analytical and normative frameworks that can be adapted within a lay-audience education concept.


Assuntos
COVID-19 , Letramento em Saúde , Currículo , Humanos , Pandemias , SARS-CoV-2
16.
Front Psychiatry ; 12: 656822, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33897504

RESUMO

Aim: In the absence of an effective treatment, informed participation in dementia research can hardly be underestimated. However, although informed consent is key in biomedical research, it may become a barrier to participation. Whether informed consent may cause confusion and contribute to unfair participant selection in dementia research is not known. In preparation of a future epidemiological study on the prevalence and impact of dementia in Switzerland, we aimed to conduct a qualitative study to explore participants' comprehension of the purpose of informed consent form and process shortly after participation in the pilot and validation study that preceded the large scale survey. Methods: We conducted a qualitative study with 22 participants of the validation phase of an epidemiological study on the prevalence and impact of dementia in Switzerland to capture their understanding of both the nature and the content of the informed consent form and process. Participants were older adults (65 years or more) eligible for a dementia epidemiological study and their informant (a person who could provide information on their health and cognition). None of the participants reported to be suffering from dementia at the time of the interview. Results: We found that participants held inaccurate and potentially trust-threatening beliefs regarding the scope of the informed consent. Participants identified contradictory contextual, formal and content needs that are difficult to be fulfilled, and misperceived the clinical and research settings in terms of informed consent procedures. Conclusions: Participants and their proxies should be informed about both the scope of the informed consent process, and the content of the informed consent document in a focused, age-appropriate manner, while dispelling confusion about the purpose of research.

17.
PLoS One ; 16(2): e0247141, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33577607

RESUMO

INTRODUCTION: High participation in epidemiological studies is crucial for both external and internal validity. Because response rates have declined in recent years, there is an increasing need to understand the drivers and the barriers to research participation. This study aims to uncover the motivations in favour and against participation of older adults to an epidemiological study on health and dementia. METHODS: Twenty-two older adults, who already took part to the preliminary phase of an epidemiological study in Switzerland, agreed to participate to semi-structured, face-to- face interviews. An experienced researcher carried out all interviews in a quiet place of choice of the interviewee either at their domicile or the university, between November 2019 and January 2020. The interviews were audio and video taped, transcribed verbatim, and thematically analysed by two independent researchers. RESULTS: We identified three main themes for the motivations in favour of participation (i.e. personal, related to the outcomes of research, and altruistic motivations), and we highlighted subthemes for each theme (e.g. personal motivations: curiosity; civic engagement; interest in the topic; trust in science; everyone counts; openness; play the game). Motivations against participation reflected the first two themes, while there was no counterpart for altruistic motivations. CONCLUSIONS: Our thematic analysis revealed that older adults hold specular motivations in favour and against participation to research. Studying jointly motivations in favour and against provides information for recruitment strategies and to overcome barriers to participation, respectively. Participatory action research can inform the design and conduction of and should precede epidemiological studies in older adults, and can potentially contribute to attain high response rates.


Assuntos
Demência/epidemiologia , Estudos Epidemiológicos , Motivação , Participação do Paciente/psicologia , Idoso , Idoso de 80 Anos ou mais , Envelhecimento/psicologia , Demência/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Suíça , Confiança
18.
Int J Geriatr Psychiatry ; 36(1): 207-214, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32869397

RESUMO

OBJECTIVES: To explore prospective participants' preferences regarding the return of their individual-specific results from a dementia prevalence study (a probabilistic diagnosis of dementia). METHODS/DESIGN: We conducted a qualitative study with 22 individuals aged 45 to 86 and resident in the Canton of Ticino (Switzerland). Participants had previously joined the validation phase of an epidemiological study into dementia and its impact. RESULTS: We found that individuals welcome the return of their individual-specific results, provided these meet a number of validity, clinical, and personal utility criteria. They justify researchers' duty to return study findings with the principles of beneficence (eg, providing information that can help participants' medical decision-making) and justice (eg, acknowledging participants' efforts to help research by sharing their personal information). Furthermore, individuals anticipate societal benefits of the return of individual specific study findings, including improved interpersonal relationships among individuals and decreased dementia-related stigma. CONCLUSIONS: Our findings suggest that researchers should address the return of individual-specific study results early on during study design and involve prospective participants in identifying both the conditions under which results should be offered and the perceived individual and societal benefits returning can have.


Assuntos
Demência , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Demência/epidemiologia , Humanos , Estudos Prospectivos , Pesquisa Qualitativa , Suíça/epidemiologia
19.
JMIR Mhealth Uhealth ; 8(12): e22452, 2020 12 09.
Artigo em Inglês | MEDLINE | ID: mdl-33295876

RESUMO

BACKGROUND: Mobile health applications can offer tailored self-management support to individuals living with chronic health conditions. However, there are several challenges to the adoption of these technologies in practice. Co-design is a promising approach to overcoming some of these challenges by enabling the development of solutions that meet the actual needs and preferences of the relevant stakeholder groups. OBJECTIVE: Taking spinal cord injury as a case in point, the overall objectives of this study were to identify the perceived benefits of a co-designed self-management app that could promote its uptake and to explore the factors that may impede adoption. METHODS: We adopted a qualitative research approach guided by the Technology Acceptance Model. Data were collected through semistructured interviews with individuals with spinal cord injury (n=15) and two focus groups with health care professionals specialized in spinal cord injury (n=7, n=5). Prior to the interviews and focus groups, study participants were given time to explore the app prototype. All interviews were transcribed verbatim and analyzed using inductive thematic analysis. RESULTS: Findings of our analysis indicate that study participants perceived the app prototype as potentially useful for supporting individuals with spinal cord injury in preventing pressure injuries. In particular, we identified three concrete use cases highlighting the benefits of the app for different audiences: (1) a companion for newly injured individuals, (2) an emergency kit and motivational support, and 3) a guide for informal caregivers and family members. We also uncovered several challenges that might impede the adoption of the self-management app in practice, including (1) challenges in motivating individuals to use the app, (2) concerns about the misuse and abuse of the app, and (3) organizational and maintenance challenges. CONCLUSIONS: This study adds to a growing body of research that investigates individuals' adoption and nonadoption behavior regarding mobile health solutions. Building on earlier work, we make recommendations on how to address the barriers to the adoption of mobile health solutions identified by this study. In particular, there is a need to foster trust in mobile health among prospective users, including both patients and health care professionals. Moreover, increasing personal relevance of mobile health solutions through personalization may be a promising approach to promote uptake. Last but not least, organizational support also plays an instrumental role in mobile health adoption. We conclude that even though co-design is promoted as a promising approach to develop self-management tools, co-design does not guarantee adoption. More research is needed to identify the most promising strategies to promote the adoption of evidence-based mobile health solutions in practice.


Assuntos
Aplicativos Móveis , Úlcera por Pressão , Autogestão , Traumatismos da Medula Espinal , Feminino , Humanos , Masculino , Estudos Prospectivos , Pesquisa Qualitativa , Traumatismos da Medula Espinal/terapia , Úlcera por Pressão/prevenção & controle
20.
BMC Geriatr ; 20(1): 472, 2020 11 16.
Artigo em Inglês | MEDLINE | ID: mdl-33198641

RESUMO

BACKGROUND: International research shows that social isolation is harmful for health, especially for the elderly. Its objective and subjective dimensions are important to distinguish as each stands in a different relation with health. The first aim of the present study is the validation of three scales measuring objective and subjective isolation in an Italian elderly population. The second aim is to analyze subjective and objective social isolation and to appraise their association with health among seniors. METHODS: This cross-sectional survey collected data from 306 over 65 s participants. Questionnaires were administered face-to-face by one author and encompassed: social disconnectedness scale; perceived isolation scale; abbreviated Lubben Social Network Scale; measures of general and mental health, and depression. RESULTS: The three scales measuring social isolation demonstrated acceptable psychometric properties and validity. Objective and subjective social isolation were not directly associated with physical health, whereas subjective isolation is strongly linked to worse mental health and depression. Higher level of subjective isolation was associated with lower level of physical health through the mediation of mental health. Subjective isolation served as a mediator in the relation between objective isolation and health. Moderation analysis demonstrated that low values of objective isolation predicted high values of mental health but only when subjective isolation was low. None of these relations were moderated by socio-demographic variables. CONCLUSION: Subjective and objective isolation are clearly two separate dimensions and the scales validated in this paper showed to be potentially culturally invariant. Researchers should work to find instruments able to depict the complexity of the construct of social isolation.


Assuntos
Saúde Mental , Isolamento Social , Idoso , Estudos Transversais , Humanos , Itália/epidemiologia , Solidão , Inquéritos e Questionários
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