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BackgroundInformal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage. ObjectiveThis study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden). MethodsA systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions. ResultsFrom a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer’s wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare. ConclusionsThe review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.

BackgroundDuring the last decade, more research has focused on web-based interventions delivered to support caregivers of people with dementia. However, little information is available in relation to internet use among caregivers in general, especially those caring for people with dementia. ObjectiveThe aim of this study was to evaluate the dementia-related internet use and factors that may be associated with its use among caregivers of people with dementia in Greece. MethodsSecondary data from the Greek Dementia Survey of the Athens Association of Alzheimer’s Disease and Related Disorders were collected from April to June 2017. A total of 580 caregivers of people with dementia participated in the study. ResultsThe majority of the caregivers reported that they had used the internet in the previous 3 months (84.1%, 488/580). Nearly half of the caregivers (47.5%, 276/580) reported that they had received dementia services online. Bivariate analysis showed that a dementia-specific search of information was associated with age, education, kinship, and years of care. Age (odds ratio [OR] 2.362, 95% CI 1.05-5.33) and education (OR 2.228, 95% CI 1.01-4.94) were confirmed as predictors, with younger caregivers and those with higher educational attainment being more likely to search for dementia-specific information. Use of the internet to search for dementia information was only related to hours of care. The internet use by caregivers within the previous 3 months was associated with variables such as age, education, occupation, kinship, years of care, and self-reported impact on physical and social health. ConclusionsCaregivers of people with dementia in Greece, as in the other southern European countries, are essential agents of the national health system. The existing short- and long-term respite care services are limited or nonexistent. Currently, caregivers receive mostly support and education from memory clinics and municipality consultation centers, which are mainly based in central cities in Greece. Despite the dementia awareness movement in Greece, there is still space to integrate the role of technology in the support and education of caregivers. Development of training programs for enhancing electronic health literacy skills as well as web-based services provision could support Greek caregivers in their everyday caring tasks.

A growing body of literature has acknowledged that a high number of populations with low Health Literacy (HL) is related to poor health outcomes, inequities in healthcare and high economic costs. Those findings have formulated the research questions of this review: (i) what ethical issues arise within the context of patients' HL and (ii) What is the relationship between HL and quality of life? This review followed the guidelines of Joanna Briggs Institute (JBI) and the Preferred Reporting Items for Scoping Reviews (PRISMA-ScR) and it was conducted in five databases: PubMed, CINAHL, MEDLINE, Scopus and Science Direct between June 2022 and December 2023. Out of the 3164 titles retrieved, 285 abstracts were eligible to proceed. Following a thorough examination of the full text of 61 papers, 45 sources were identified that met the inclusion criteria. The data analysis process was guided by the research questions, employing a thematic approach. Four themes were identified: the use of language and patient understanding, human rights, the principlism approach (justice, beneficence, non-maleficence and autonomy) and quality of life. The first theme mainly focused on the relation of HL with the notion of consent forms and national action plans. Human rights in relation to HL were discussed as a minor issue. The bioethical framework by Beauchamp and Childress (Principles of Biomedical Ethics, 6th edn. Oxford University Press, New York, NY, 2009), was addressed by several studies, with a particular focus on justice and the loss of autonomy. Quality of life indicated a positive correlation with HL by most of the authors, while few studies revealed a moderate correlation. [ABSTRACT FROM AUTHOR]

Patients’ satisfaction with their interaction with the healthcare providers has been found to correlate with adherence to therapeutic plans and better health outcomes. Healthcare providers are experiencing barriers when communicating with specific population subgroups, such as people with low health literacy, low education, and older age. Enhancing the communication skills of the healthcare providers working with older adults could facilitate their interaction with the patients. This study presents the validation of the Self-efficacy-12 (SE-12) in Greek. This is an instrument measuring healthcare providers’ self-efficacy of communication skills used during their interaction with older patients. A sample of 230 healthcare providers working with older adults participated in the study. The scale showed good psychometric properties (S-CVI=.97, Cronbach a = .95, ICC = .81). A medium to high correlation was found with the generalized self-efficacy questionnaire. Exploratory Factor Analysis (EFA) yielded two factors (“Self-efficacy in communication skills and strategies” and “Self-efficacy of successful interaction”) with good psychometric properties. The SE-12-GR is a brief, valid, and reliable tool for assessing self-efficacy of communication skills and it could be integrated as part of the health literacy tools for healthcare providers working with older people in Greece. [ABSTRACT FROM AUTHOR]

Strengthening the health literacy (HL) skills of the healthcare users is a multicomponent process involving the users, the healthcare professionals, the stakeholders, and the environment. Health organizations, universities, private initiatives, and funded projects focused on developing and implementing continuing education courses target at increasing healthcare professionals' HL. This scoping review aimed at reporting the HL continuing education courses for healthcare professionals to enhance their knowledge and skills in identifying and supporting healthcare users with limited HL, and particularly, older people. This review followed the five stages by Arksey and O'Malley framework and the guidelines by Joanna Briggs Institute for scoping reviews. Peer-reviewed papers and gray literature published between years 2000 to 2020 were included in this bibliometric search utilizing four electronic databases (PUBMED, MEDLINE, CINAHL, PSYCHINFO, and Opengrey). Twenty-seven (27) papers met the criteria, including twenty-one (21) full-texts and six (6) other records (website contents, eLearning, and funded projects). There is a lack of HL tools that address the training needs of healthcare professionals working with older adults. Tailored HL tools could benefit healthcare professionals' clinical work by improving their communication with older adults. [ABSTRACT FROM AUTHOR]

Background. The increased comorbidities among older people are related to the longer life expectancy and the way a condition is defined. People who live longer and remain healthy express different needs from older people of previous decades. Objective. This study aims to present the profile of the older person in contemporary society and the careworkers' humanistic training needs. Methodology. The focus group methodology was selected. Twelve focus groups consisted of 69 participants over 60 years old in total and six focus groups of 41 careworkers in total, from Italy, Portugal, Finland, Romania, UK, and Cyprus, were conducted. A content analysis was used. Results. A profile of the older person living in the above stated countries was revealed with the "New Old" being financially independent, active with a healthy lifestyle, more informed and educated in relation to the past, liking social interactions, open-minded to new relationships, volunteering for non-for-profit associations, using technology, or wanting to learn how to use. However, older people in these countries were still experiencing ageism (discrimination, ignorance, and social exclusion) and lack of respect. Care workers also expressed their views in relation to the training needs that meets this new profile of older people including basic nursing skills, daily living activities, humanistic, person-centered care, social skills, and ICT competence. Conclusions. This multicenter focus group discussions study promoted the concept of the older person in contemporary society and the importance of humanistic care. A new definition of the older person and an adaptation of the training curricula for careworkers Job certification including the person-centered approach is required. [ABSTRACT FROM AUTHOR]

Healthcare professionals' health literacy (HL) knowledge and skills influence their interaction with older adults. Healthcare professionals, when effectively communicating with older adults, can empower and enhance patients' skills to make informed decisions about their health. The study aimed to adapt and pilot test a HL toolkit to enhance the HL skills of health professionals working with older adults. A mixed methodology of three phases was used. Initially, the healthcare professionals' and older adults' needs were identified. Following a literature review of existing tools, a HL toolkit was selected, translated, and adapted into Greek. The HL toolkit was introduced to 128 healthcare professionals as part of 4 h webinars; 82 healthcare professionals completed baseline and post assessments, and 24 healthcare professionals implemented it in their clinical practice. The questionnaires used included an interview on HL knowledge, communication strategies, and self-efficacy using a communication scale. HL and communication strategies knowledge (13 items) and self-efficacy in communication (t = −11.127, df = 81, p < 0.001) improved after the end of the HL webinars, and improvement was retained during the follow-up after 2 months (H = 8.99, df = 2, p < 0.05). A culturally adapted HL toolkit was developed to support the needs of healthcare professionals working with older adults, taking into consideration their feedback in all phases of the development. [ABSTRACT FROM AUTHOR]

Health literacy (HL) and eHealth literacy (eHL) can facilitate carers of people with dementia (PwD) to search, find, assess and apply information related to dementia‐specific issues from different resources. There is a lack of research with regard to HL and eHL among carers of PwD. The aim of this study is to identify the levels of HL and eHL among carers of PwD in Greece and Cyprus and to search for the associations with other caring concepts. This study followed a descriptive correlational design. In total, 174 primary informal carers of PwD, mostly women, over 45 years old and with more than 12 years of education and 67 secondary carers (family, friends or neighbours) participated in the study. Primary informal carers completed a face‐to‐face survey on the level of HL and eHL, internet use, dementia‐specific internet use, care‐giving self‐efficacy, coping strategies, care‐giving perceptions and social support. Primary informal carers reported a high level of eHL and HL. Carers with higher HL were more likely to report higher score of eHL, care‐giving self‐efficacy and lower score of problematic/dysfunctional coping. Higher score of eHeals‐Carer "information seeking" was related with higher use of emotion‐focused strategies. From this study, a positive message was received with regard to the role of HL and eHL in the everyday caring life. Non‐for‐profit organisations and healthcare professionals could integrate in their practice assessment tools and develop tailored training courses for carers enhancing low level of HL and eHL. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic brought into the spotlight the technological needs of carers together with accessibility and availability of disease-related web-based services. Athens Alzheimer Association undertook the cultural adaptation of the platform iSupport in Greece. The process included multiple methodological steps based on Ecological Validity Model, and the platform was pilot tested to 15 carers of people with dementia. The duration of this project lasted for one year (April 2020-March 2021). Today more than 160 carers in Greece have registered on the platform. All 23 lessons are easily accessible by the isupportdementia-greece website. [ABSTRACT FROM AUTHOR]

Background: Despite well-documented evidence of the psychological effects of caring for a relative with dementia, little is known about the bereavement experiences of family carers. The aim of this study was to explore the key psychological changes associated with carers' adjustment to bereavement and "life after care."Methods: All carers taking part were recruited from a day care center, providing specialist services to people with dementia. We asked carers to describe the key changes associated with psychological adjustment to bereavement through semi-structured qualitative in-depth interviews. Strategies carers used to cope with and adapt to their new role were also explored. All data were thematically analysed.Results: Thirty-one carers were interviewed. The most frequent emotional reactions to bereavement were feelings of loneliness, loss, void, sadness, anger, and relief. Most carers were able to adapt to their new role, and engaging in pleasant activities was the most frequent strategy used to cope with loss and "life after care."Conclusions: Feelings of loneliness and loss are amongst the key emotional reactions shaping carers' adjustment to bereavement. Most carers are able to adapt to loss; however, a minority experience increased psychological distress after the death of their loved one. A small percentage of carers continues caring for other dependants. Further research is required to identify how carers of people with dementia adapt to bereavement and how this increasing number of individuals can be best supported. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to explore the needs of dementia patients' caregivers throughout Greece in order to use the acquired data for designing a comprehensive national dementia strategy. Methods: The work was carried out in Athens Alzheimer Association's Day Care. A questionnaire containing 14 close question and 2 open ended was completed by 248 caregivers looking after people with dementia living at home and participating in the activities of the Day Care Centers of the Alzheimer's Association. Results: The majority of caregivers were females (78.2%), mainly daughters or spouses. A 41.1% had 12-18 years of formal education. Most of them lived with the person with dementia (69.4%). A 57.8% reported neither difficulties nor complaints regarding the existing medical and social services they took advantage of. However, financial problems and lack of allowances were crucial issues for most of them. Moreover, caregivers needed more support in caring and especially in every day practical and legal issues. Conclusion: The findings of this survey highlight the importance of assessing the needs of family caregivers when designing health and social care policies. [ABSTRACT FROM AUTHOR]

Background: As the population ages, many more people will be in need of long-term care. According to a recent report by Alzheimer's Disease International and the Karolinska Institute, 84% of people with dementia are cared for at home and 16% in nursing homes. Several Web-based interventions have been developed to assist the work of carers at home. Measuring the levels of electronic health (eHealth) literacy is of top priority to facilitate inclusion of this population and develop training programs to enhance eHealth literacy skills.Objective: This study aimed to adapt the eHealth Literacy Scale (eHeals) for carers of people with dementia, who speak Greek as their native language and live in Greece and Cyprus, and to test the reliability and validity of the scale for carers.Methods: The content validity of the eHealth Literacy Scale for Carers of People With Chronic Diseases (eHeals-Carer) was assessed with an expert panel (N=10). A descriptive study with face-to-face interviews among 101 primary carers of people with dementia was conducted. In addition to the eHeals-Carer to assess their perceived eHealth literacy, participants responded to a brief questionnaire regarding characteristics of internet use and provided sociodemographic data. The internal consistency of the tool and the construct validity via an exploratory factor analysis (EFA) were explored.Results: The Mean Item-Level Content Validity Index (CVI) and Scale-Level CVI Average was 0.93. The participants were mostly women (75.2%, 76/101), aged less than 60 years (67.3%, 68/101) with secondary education. The internal consistency was estimated at a Cronbach alpha of .83. Two factors were extracted from the EFA: information seeking questions 1 to 5 (factor 1) and evaluation questions 6 to 8 (factor 2).Conclusions: eHeals-Carer is the first perceived eHealth literacy tool adapted for carers of people with dementia. The use of Web-based services available for carers could help them and improve the health care system in the long term. In Greece and Cyprus, there is a lack of services, and improving the digital skills of carers could provide them with the means to support themselves at home and improve care provision.International Registered Report Identifier (irrid): RR2-10.2196/resprot.8080. [ABSTRACT FROM AUTHOR]

Background: In the last decade, electronic health (eHealth) literacy has attracted the attention of the scientific community, as it is associated with the self-management of patients with chronic diseases and the quality and cost of care. It is estimated that 80% of people with chronic diseases are cared for at home by a family member, friend, or relative. Informal carers are susceptible to physical and mental health problems, as well as social and financial hardships. Nevertheless, there seems to be a research gap in terms of carers' needs, skills, and available resources in the age of new technologies, with the vital role of eHealth literacy of the carers remaining unexplored. Objective: The aim of this study was to investigate the level of eHealth literacy and health literacy of primary and secondary carers of people with dementia, to explore the association between health and eHealth literacy, as well as their association with the caregiving variables: self-efficacy, coping, and caring perceptions. Methods: A sample of 200 primary carers (the carer who supports the people with dementia in everyday living) and 200 secondary carers (family member, friend, or other person in the social network assisting the primary carer in their role) will be recruited from dementia day care centers and Alzheimer's associations in Greece and Cyprus. The study will be a cross-sectional correlational descriptive study. Tools to be used include the eHealth Literacy Scale adapted for carers to measure eHealth literacy, European Health Literacy Survey Questionnaire 16 (HLS- EU-Q16), Single Item Literacy Screener, Revised Scale for Caregiving Self- Efficacy, Carers of Older People in Europe (COPE) index for caregiving perceptions, and COPE brief to measure selected coping strategies. Descriptive statistics will be reported, and correlations between different variables will be explored with parametric and nonparametric measures. Results: As a preliminary study, the HLS-EU-Q16 has been validated in 107 older people. The internal consistency of the scale as estimated using Cronbach alpha coefficient was .77, somewhat lower than other validation studies. Recruitment of pilot study participants started in May 2017. Conclusions: Carers' eHealth literacy is a new field. Whereas previous studies have focused on the role and impact of low eHealth literacy and health literacy among older adults, the eHealth literacy of carers, and in fact carers of people with dementia, has not been explored. We hypothesize an association between eHealth literacy and health literacy level with carers' perceptions about caregiving role, self-efficacy, and coping strategies. A possible moderator in these associations is the secondary carers' eHealth and health literacy level, which will also be explored. By confirming the above hypotheses, tailored eHealth literacy interventions for carers of people with dementia and their families will be developed as a direct outcome of this research. [ABSTRACT FROM AUTHOR]

New web-based services emerge to support carers in their role, but little is known regarding the way that carers use the internet or any related services. In an effort, to improve the health-related digital skills of carers aiming to support their caring role, we have developed eHealth Literacy Learning Skills among Carers of People with Dementia, the eLILY project. This paper presents the findings of a modified Delphi survey planned and delivered in the framework of the project as an effort to integrate stakeholders' knowledge and expertise in the proposed curriculum.

InformCare is a European Web platform that supports informal caregivers of older people by providing access to online information and professional and peer support. The aim of this study was to assess the usage and usability of a psychosocial Web-based program carried out in three European countries (Italy, Sweden, and Germany). A mixed-methods sequential explanatory design was adopted, comprising baseline and postintervention assessments, as well as combined thematic content analysis of results and focus group findings. A convenience sample of 118 caregivers was enrolled, of whom 94 used the services offered by the program at least once. The subsamples in the three countries used the platform in different ways, with a predominance of passive strategies (eg, seeking information and reading other people's comments) for Italian caregivers, and more active usage by Swedish and German caregivers. The usability assessment showed that the platform was perceived well by Italian and German caregivers, whereas technical problems affected the Swedish sample's experiences. Focus group data highlighted user satisfaction with the online support and reliability of the environment. Recommendations for practitioners are to ensure digital training for caregivers who have lower confidence in use of the Internet, to involve different healthcare professionals in the provision of professional support, and to adequately manage online community building.

Background: In the last decade, electronic health (eHealth) literacy has attracted the attention of the scientific community, as it is associated with the self-management of patients with chronic diseases and the quality and cost of care. It is estimated that 80% of people with chronic diseases are cared for at home by a family member, friend, or relative. Informal carers are susceptible to physical and mental health problems, as well as social and financial hardships. Nevertheless, there seems to be a research gap in terms of carers' needs, skills, and available resources in the age of new technologies, with the vital role of eHealth literacy of the carers remaining unexplored., Objective: The aim of this study was to investigate the level of eHealth literacy and health literacy of primary and secondary carers of people with dementia, to explore the association between health and eHealth literacy, as well as their association with the caregiving variables: self-efficacy, coping, and caring perceptions., Methods: A sample of 200 primary carers (the carer who supports the people with dementia in everyday living) and 200 secondary carers (family member, friend, or other person in the social network assisting the primary carer in their role) will be recruited from dementia day care centers and Alzheimer's associations in Greece and Cyprus. The study will be a cross-sectional correlational descriptive study. Tools to be used include the eHealth Literacy Scale adapted for carers to measure eHealth literacy, European Health Literacy Survey Questionnaire 16 (HLS-EU-Q16), Single Item Literacy Screener, Revised Scale for Caregiving Self-Efficacy, Carers of Older People in Europe (COPE) index for caregiving perceptions, and COPE brief to measure selected coping strategies. Descriptive statistics will be reported, and correlations between different variables will be explored with parametric and nonparametric measures., Results: As a preliminary study, the HLS-EU-Q16 has been validated in 107 older people. The internal consistency of the scale as estimated using Cronbach alpha coefficient was .77, somewhat lower than other validation studies. Recruitment of pilot study participants started in May 2017., Conclusions: Carers' eHealth literacy is a new field. Whereas previous studies have focused on the role and impact of low eHealth literacy and health literacy among older adults, the eHealth literacy of carers, and in fact carers of people with dementia, has not been explored. We hypothesize an association between eHealth literacy and health literacy level with carers' perceptions about caregiving role, self-efficacy, and coping strategies. A possible moderator in these associations is the secondary carers' eHealth and health literacy level, which will also be explored. By confirming the above hypotheses, tailored eHealth literacy interventions for carers of people with dementia and their families will be developed as a direct outcome of this research., (©Areti Efthymiou, Nicos Middleton, Andreas Charalambous, Evridiki Papastavrou. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 13.11.2017.)

Background: Informal caregiving is the main source of care for older people in Europe. An enormous amount of responsibility and care activity is on the shoulders of family caregivers, who might experience problems in their psychological well-being and in reconciling caregiving and their personal sphere. In order to alleviate such burden, there is increasing interest and growing research in Europe on Web-based support addressing family caregivers and their needs. However, the level of development and penetration of innovative Web-based services for caregivers is still quite low and the access to traditional face-to-face services can be problematic for logistic, availability, and quality reasons., Objective: As part of the European project INNOVAGE, a pilot study was conducted for developing and testing a Web-based psychosocial intervention aimed at empowering family caregivers of older people in Italy, Sweden, and Germany. The program offered information resources and interactive services to enable both professional and peer support., Methods: A mixed-methods, sequential explanatory design was adopted. Caregivers' psychological well-being, perceived negative and positive aspects of caregiving, and social support received were assessed before and after the 3-month intervention. Poststudy, a subsample of users participated in focus groups to assist in the interpretation of the quantitative results., Results: A total of 94 out of 118 family caregivers (79.7%) from the three countries used the Web platform at least once. The information resources were used to different extents in each country, with Italian users having the lowest median number of visits (5, interquartile range [IQR] 2-8), whereas German users had the highest number (17, IQR 7-66) (P<.001). The interactive services most frequently accessed (more than 12 times) in all countries were the social network (29/73, 40%) and private messages (27/73, 37%). The pretest-posttest analysis revealed some changes, particularly the slight worsening of perceived positive values of caregiving (Carers of Older People in Europe [COPE] positive value subscale: P=.02) and social support received (COPE quality-of-support subscale: P=.02; Multidimensional Scale of Perceived Social Support subscale: P=.04), in all cases with small effect size (r range -.15 to -.18). Focus groups were conducted with 20 family caregivers and the content analysis of discussions identified five main themes: online social support, role awareness, caregiving activities, psychological well-being, and technical concerns. The analysis suggested the intervention was useful and appropriate, also stimulating a better self-efficacy and reappraisal of the caregivers' role., Conclusions: The intervention seemed to contribute to the improvement of family caregivers' awareness, efficacy, and empowerment, which in turn may lead to a better self-recognition of their own needs and improved efforts for developing and accessing coping resources. A major implication of the study was the finalization and implementation of the InformCare Web platform in 27 European countries, now publicly accessible (www.eurocarers.org/informcare)., Competing Interests: Conflicts of Interest: None declared.