BackgroundInformal 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.ObjectiveAs 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.MethodsA 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.ResultsA 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.ConclusionsThe 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 InformCa...

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.

BackgroundIn 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.ObjectiveThe 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.MethodsA 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.ResultsAs 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.ConclusionsCarers’ 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.

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.

BackgroundAs 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.ObjectiveThis 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.MethodsThe 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.ResultsThe 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).ConclusionseHeals-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