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Adapting the eHealth Literacy Scale for Carers of People With Chronic Diseases (eHeals-Carer) in a Sample of Greek and Cypriot Carers of People With Dementia: Reliability and Validation Study.

ABSTRACT: 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.

SUBMITTER: Efthymiou A

PROVIDER: S-EPMC6908974 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundPeople with dementia living at home represent a growing group of social care services users in England. Many are unable to complete questionnaires due to cognitive impairment. The ASCOT-Proxy is an adapted version of an established measure, ASCOT, which was developed as a way of collecting social care-related quality of life (SCRQoL) data from this group of service users, either alone or alongside the ASCOT-Carer, a measure of SCRQoL for unpaid carers. The ASCOT-Proxy includes two perspectives, the proxy-proxy perspective ('My opinion: What I think') and proxy-person perspective ('What I think the person I represent thinks'). We aimed to establish the feasibility, construct validity and reliability of the ASCOT-Proxy and ASCOT-Carer, with unpaid carers of people with dementia living at home unable to self-report. We also aimed to establish structural characteristics of the ASCOT-Proxy.MethodsCross-sectional data were collected using self-administered questionnaire (paper or online) among unpaid carers living in England between January 2020 and April 2021. Unpaid carers could take part if they supported someone living with dementia who was unable to self-complete a structured questionnaire. The person living with dementia or their unpaid carer had to use at least one social care service. We used the proportion of missing data to establish feasibility, ordinal exploratory factor analysis to establish structural characteristics, Zumbo's ordinal alpha for internal reliability, and hypothesis testing for construct validity. We also conducted Rasch analysis.ResultsWe analysed data for 313 carers (62.4(± 12.0) years, 75.7% (N=237) females). We were able to calculate the ASCOT-Proxy-proxy overall score for 90.7% of our sample, the ASCOT-Proxy-person overall score for 88.8% of our sample and in case of the ASCOT-Carer for 99.7% of our sample. As there was an issue with structural characteristics of the ASCOT-Proxy-proxy we conducted Rasch, reliability and construct validity analysis for the ASCOT-Proxy-person and ASCOT-Carer only.ConclusionsThis was a first study to explore psychometric characteristics of the ASCOT-Proxy and ASCOT-Carer with unpaid carers of people with dementia living at home unable to self-report. There are some aspects of the psychometric characteristics of the ASCOT-Proxy and ASCOT-Carer that warrant further investigation in future. Trial registration NA.

Project description:BackgroundThe prevalence of dementia is increasing, and there are many associated problems that family members face as informal carers, including emotional, physical, and financial difficulties. There are benefits for a person with dementia to live at home for as long as possible, and therefore, supporting their informal carers is crucial. The growing interest in supporting carers through internet-based interventions is evidenced by the volume of systematic reviews on this topic. It is now appropriate to systematically examine this body of work and provide an overview of the literature.ObjectiveThis umbrella review aimed to identify the most effective internet-based intervention content and delivery method to support those caring for someone with dementia living in the community.MethodsPsycINFO, Web of Science, CINAHL, MEDLINE, Cochrane Library, and PubMed were searched for systematic reviews examining the effectiveness of web-based interventions for informal carers of people with dementia. A total of 3 reviewers extracted data and evaluated the quality of the papers. To ascertain the extent to which the systematic reviews reported on the same evidence, the proportion of overlap between their included studies was calculated. Qualitative research findings were extracted and reported.ResultsA total of 21 papers were included in the study. The quality of the review papers was mainly rated as low to moderate, and 10% (2/21) of papers were of high quality. The findings suggest that multicomponent interventions were the most effective in supporting carers. These included combinations of cognitive behavioral therapy and relaxation strategies, educational resources, and online support groups. Interventions that were delivered on the web but included sessions with a personal element, such as telephone contact, showed the best results. When comparing the studies reviewed in all the review papers, a moderate overlap was noted. However, when comparing individual reviews with each other, they showed a high overlap of the included studies.ConclusionsMixed delivery methods and intervention content showed the most effective results in supporting those caring for people with dementia. However, many papers do not separate the results for differing intervention contents or delivery; this needs to be considered when drawing conclusions. There was an overlap among the studies included in the reviews. This suggests a lack of current research on the effectiveness of web-based interventions for people caring for a person with dementia. There was also a lack of consistency in the outcome measures across all papers. Future studies can involve updating research on the effectiveness of these interventions while distinguishing between different intervention types, thus creating guidelines for the use of standardized measures to enable comparisons of intervention effects and improve the scientific quality of the overall research.Trial registrationPROSPERO CRD42021241559; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=241559.

Project description:IntroductionFamily carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people's ability to access health services, and navigate the healthcare system. This study's aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care.MethodWe designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad.FindingsIn a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables.ConclusionThis is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers' HL may have potential to enhance their ability to provide sustainable care over time.

Project description:BACKGROUND:In this digital era, eHealth literacy is an essential skill set to leverage health information available online to promote health outcomes. South Korea has an advanced health information technology infrastructure, including widespread use of the internet and mobile phones. A few studies have explored eHealth literacy in South Korea using translated versions of the eHEALS; however, they were not fully validated. A unified reliable and valid assessment tool is critical to assess and enhance the eHealth literacy level across the population. OBJECTIVE:The aim was to develop a Korean version of eHealth Literacy Scale (K-eHEALS) and evaluate its reliability and validity employing healthy young adults in Korea. METHODS:The K-eHEALS was developed based on eHEALS, a widely used tool that measures eHealth literacy, and was validated using a sample of 500 young adults recruited from a pool of a Korean internet survey panel. Content validity was assessed using the content validity index (CVI) for individual items and for scale. Construct validity was examined using exploratory factor analysis and hypothesis testing. The Cronbach alpha coefficient was used to determine the internal consistency and the Pearson correlation coefficient was used to evaluable the stability of the measure (n=55). RESULTS:Both individual and scale CVIs were acceptable (individual CVIs>0.67; scale CVI=0.83). Single factors accounting for 50.3% of the variance in the scales were extracted revealing the unidimensional latent structure of K-eHEALS. Hypothesis testing showed significant association between eHealth literacy and hours of internet use per day, supporting the construct validity. Items of the K-eHEALS were internally consistent (Cronbach alpha=.88) and stable over a 1-month period (r=.754, P<.001). CONCLUSIONS:The findings of this study suggest that K-eHEALS is a valid and reliable measure of eHealth literacy in Korean young adults. Additional studies are needed with more diverse groups of adults in Korea.

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Adapting the eHealth Literacy Scale for Carers of People With Chronic Diseases (eHeals-Carer) in a Sample of Greek and Cypriot Carers of People With Dementia: Reliability and Validation Study.

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