Review and Selection of Online Resources for Carers of Frail Adults or Older People in Five European Countries: Mixed-Methods Study

17.06.2020. BACKGROUND: Informal 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. OBJECTIVE: This 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). METHODS: A 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. RESULTS: From 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. CONCLUSIONS: The 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.This study was co-funded by the Erasmus+ programme of the European Union, under the Project “Apps for carers”, Grant Agreement n. 2016-1-SE01-KA204-022067. This study was partially supported by Ricerca Corrente funding from the Italian Ministry of Health to IRCCS INRCA

Report on SHAFE policies, strategies and funding

The objective of Working Group (WG) 4 of the COST Action NET4Age-Friendly is to examine existing policies, advocacy, and funding opportunities and to build up relations with policy makers and funding organisations. Also, to synthesize and improve existing knowledge and models to develop from effective business and evaluation models, as well as to guarantee quality and education, proper dissemination and ensure the future of the Action. The Working Group further aims to enable capacity building to improve interdisciplinary participation, to promote knowledge exchange and to foster a cross-European interdisciplinary research capacity, to improve cooperation and co-creation with cross-sectors stakeholders and to introduce and educate students SHAFE implementation and sustainability (CB01, CB03, CB04, CB05). To enable the achievement of the objectives of Working Group 4, the Leader of the Working Group, the Chair and Vice-Chair, in close cooperation with the Science Communication Coordinator, developed a template (see annex 1) to map the current state of SHAFE policies, funding opportunities and networking in the COST member countries of the Action. On invitation, the Working Group lead received contributions from 37 countries, in a total of 85 Action members. The contributions provide an overview of the diversity of SHAFE policies and opportunities in Europe and beyond. These were not edited or revised and are a result of the main areas of expertise and knowledge of the contributors; thus, gaps in areas or content are possible and these shall be further explored in the following works and reports of this WG. But this preliminary mapping is of huge importance to proceed with the WG activities. In the following chapters, an introduction on the need of SHAFE policies is presented, followed by a summary of the main approaches to be pursued for the next period of work. The deliverable finishes with the opportunities of capacity building, networking and funding that will be relevant to undertake within the frame of Working Group 4 and the total COST Action. The total of country contributions is presented in the annex of this deliverable

Report on Shafe Policies, Strategies and Funding

The objective of Working Group 4 of the COST Action NET4Age-Friendly is to examine existing policies, advocacy, and funding opportunities and to build up relations with policy makers and funding organisations. Also, to synthesize and improve existing knowledge and models to develop from effective business and evaluation models, as well as to guarantee quality and education, proper dissemination and ensure the future of the Action. The Working Group further aims to enable capacity building to improve interdisciplinary participation, to promote knowledge exchange and to foster a cross-European interdisciplinary research capacity, to improve cooperation and co-creation with cross-sectors stakeholders and to introduce and educate students SHAFE implementation and sustainability. To enable the achievement of the objectives of Working Group 4, the Leader of the Working Group, the Chair and Vice-Chair, in close cooperation with the Science Communication Coordinator, developed a template to map the current state of SHAFE policies, funding opportunities and networking in the COST member countries of the Action. On invitation, the Working Group lead received contributions from 37 countries, in a total of 85 Action members. The contributions provide an overview of the diversity of SHAFE policies and opportunities in Europe and beyond. These were not edited or revised and are a result of the main areas of expertise and knowledge of the contributors; thus, gaps in areas or content are possible and these shall be further explored in the following works and reports of this WG. But this preliminary mapping is of huge importance to proceed with the WG activities. In the following chapters, an introduction on the need of SHAFE policies is presented, followed by a summary of the main approaches to be pursued for the next period of work. The deliverable finishes with the opportunities of capacity building, networking and funding that will be relevant to undertake within the frame of Working Group 4 and the total COST Action. The total of country contributions is presented in the annex of this deliverable

Global variations in diabetes mellitus based on fasting glucose and haemogloblin A1c

Fasting plasma glucose (FPG) and haemoglobin A1c (HbA1c) are both used to diagnose diabetes, but may identify different people as having diabetes. We used data from 117 population-based studies and quantified, in different world regions, the prevalence of diagnosed diabetes, and whether those who were previously undiagnosed and detected as having diabetes in survey screening had elevated FPG, HbA1c, or both. We developed prediction equations for estimating the probability that a person without previously diagnosed diabetes, and at a specific level of FPG, had elevated HbA1c, and vice versa. The age-standardised proportion of diabetes that was previously undiagnosed, and detected in survey screening, ranged from 30% in the high-income western region to 66% in south Asia. Among those with screen-detected diabetes with either test, the agestandardised proportion who had elevated levels of both FPG and HbA1c was 29-39% across regions; the remainder had discordant elevation of FPG or HbA1c. In most low- and middle-income regions, isolated elevated HbA1c more common than isolated elevated FPG. In these regions, the use of FPG alone may delay diabetes diagnosis and underestimate diabetes prevalence. Our prediction equations help allocate finite resources for measuring HbA1c to reduce the global gap in diabetes diagnosis and surveillance.peer-reviewe

The association of health literacy and eHealth literacy with caring concepts among carers of people with dementia

Τις δύο τελευταίες δεκαετίες, υπάρχει αύξηση των τεχνολογικών καινοτομιών. Η προσβασιμότητα σε ευάλωτες ομάδες αποτελεί προτεραιότητα για τους εκπαιδευτές και τους επαγγελματίες υγείας. Η πρόσβαση υπηρεσιών μέσω του διαδικτύου θα μπορούσε να διευκολύνει τους οικογενειακούς φροντιστές ατόμων με άνοια στην καθημερινότητα τους. Οι φροντιστές ατόμων με άνοια αντιμετωπίζουν τις συνέπειες της επιβάρυνσης της φροντίδας, συναισθήματα άγχους, κατάθλιψης, ενοχής, κάνουν αυξημένη χρήση αντικαταθλιπτικών και είναι πιο επιρρεπείς σε λοιμώξεις σε σύγκριση με τον γενικό πληθυσμό. Επιπρόσθετα αντιμετωπίζουν προβλήματα στη φροντίδα των ασθενών λόγω της φύσης της νόσου και των συνοδών προβλημάτων μνήμης και συμπεριφοράς τους. Οι υπηρεσίες για φροντιστές μπορεί να περιλαμβάνουν εκπαιδευτικές πλατφόρμες και ιστοσελίδες, μέσα κοινωνικής δικτύωσης και άλλες διαδραστικές υπηρεσίες, υπηρεσίες τηλεϊατρικής και εφαρμογές για στήριξη και νοητική ενδυνάμωση. Η προσφορά και η ζήτηση αυτών των υπηρεσιών διαφοροποιείται στις χώρες της Ευρωπαϊκής ένωσης και επηρεάζονται από τις ψηφιακές δεξιότητες και τις στάσεις του πληθυσμού στην τεχνολογία. Η Εγγραμματοσύνη σε θέματα για την υγεία (Health Literacy-HL) και η Ψηφιακή Εγγραμματοσύνη σε θέματα για την υγεία (eHealth Literacy-eHL) είναι δύο έννοιες που μπορούν να διευκολύνουν τους φροντιστές να ψάξουν, να βρουν , να αξιολογήσουν και να εφαρμόσουν πληροφορίες σχετικές με την άνοια μέσω διαφορετικών πηγών (φίλοι, συγγενείς, γείτονες, επαγγελματίες υγείας, διαδίκτυο). Αυτή η μελέτη ερευνά το επίπεδο της Εγγραμματοσύνης σε θέματα για την υγεία (HL) και την Ψηφιακή Εγγραμματοσύνη σε θέματα για την υγεία (eHL) και τις συσχετίσεις τους με τις άλλες μεταβλητές για τη φροντίδα. Η έρευνα είναι μία περιγραφική μελέτη συσχετίσεων και η μεθοδολογία ακολουθεί 5 φάσεις. Αρχικά, πραγματοποιήθηκαν 2 αναζητήσεις διερεύνησης και δύο βιβλιογραφικές αναζητήσεις για την εύρεση σχετικών μελετών. Κατά δεύτερον, εγκυροποιήθηκαν τα εργαλεία που δεν ήταν διαθέσιμα στην Ελληνική γλώσσα. Η τρίτη φάση περιελάμβανε την ομάδα σύγκλισης απόψεων για την ελληνική ορολογία του Health Literacy και eHealth Literacy. Στη συνέχεια, ακολούθησαν η πιλοτική και η έρευνα πεδίου. Συνολικά, 174 πρωτοβάθμιοι φροντιστές ατόμων με άνοια (76% γυναίκες, ν=132) και 67 δευτεροβάθμιοι φροντιστές (οικογένεια, φίλοι, γείτονες που στηρίζουν τους πρωτοβάθμιους φροντιστές και τα άτομα με άνοια) συμμετείχαν στη μελέτη. Οι πρωτοβάθμιοι φροντιστές συμπλήρωσαν μία δια ζώσης έρευνα για το επίπεδο της HL και της eHL, τη χρήση του διαδικτύου, τη χρήση του διαδικτύου για την εύρεση πληροφοριών για την άνοια, την αυτό-αποτελεσματικότητα στη φροντίδα, τις στρατηγικές αντιμετώπισης, τις αντιλήψεις για τη φροντίδα και την κοινωνική στήριξη. Οι δευτεροβάθμιοι φροντιστές συμπλήρωσαν την έρευνα για την HL, την eHL και δημογραφικά στοιχεία. Σε αυτή την έρευνα, οι πρωτοβάθμιοι φροντιστές αναφέραν υψηλό επίπεδο eHL (29.21/40, Τ.Α=4.8) και HL (13.64/16, Τ.Α.=1.92). Παρόμοια αποτελέσματα αναφέρουν και οι δευτεροβάθμιοι φροντιστές (eHL =30.54/40, Τ.Α.=4.34 and HL=13.09, Τ.Α.=2.05). Η ανάλυση συστάδων εμφάνισε 3 προφίλ φροντιστών: 1) φροντιστές με υψηλή HL, eHL και αυτό- αποτελεσματικότητα, 2) φροντιστές με προβληματικές στρατηγικές αντιμετώπισης και αρνητικές αντιλήψεις για τη φροντίδα, 3) φροντιστές με υψηλή HL, eHL και ισχυρό κοινωνικό δίκτυο. Οι φροντιστές με υψηλή HL ήταν πιο πιθανό να δηλώσουν υψηλή eHL, αυτό-αποτελεσματικότητα για την ανακουφιστική φροντίδα και τη διαχείριση των διαταραχών συμπεριφοράς. Οι φροντιστές με υψηλή eHL είναι πιο πιθανό να δηλώσουν θετικές αντιλήψεις για τη φροντίδα και στρατηγικές αντιμετώπισης εστιασμένες στο συναίσθημα. Οι φροντιστές ατόμων με άνοια σε αυτό το δείγμα ανέφερε ικανοποιητικό επίπεδο HL και eHL, μιας και δρουν για τη φροντίδα ενός άλλου ανθρώπου. Οι υπηρεσίες που είναι σχεδιασμένες να καλύπτουν τις ανάγκες του πληθυσμού με αυτό το προφίλ HL και eHL θα μπορούσαν να ενισχύσουν την βιωσιμότητα των υπηρεσιών μέσω διαδικτύου. Επιπλέον, οι νοσηλευτές και άλλοι επαγγελματίες υγείας εάν αποκτήσουν τα εργαλεία αναγνώρισης φροντιστών με χαμηλή HL, θα μπορούσαν να παρέχουν υπηρεσίες σχεδιασμένες για τις ανάγκες των φροντιστών και την ενίσχυση των HL δεξιοτήτων τους.During these two last decades, there is an increase in health technological advances. Making them accessible to groups with vulnerability is a priority for educators and health care professionals. Access to web-based services could facilitate the informal carers of PwD in their everyday life. Carers of PwD are facing the consequences of the burden of care, feelings of anxiety, depression, guilt, make higher use of antidepressants and are more vulnerable to infections than the general population. Web-based services for informal carers may include training platforms and diseasespecific websites, forums, social networks and other interactive services, telehealth, telemedicine, applications for support and cognitive rehabilitation. The offer and demand for these services are differentiated among European countries. They are influenced by the digital skills and attitudes of the population towards technology. Health Literacy (HL) and eHealth literacy (eHL) are two concepts that can facilitate carers to search, find, assess and apply information related to dementiaspecific issues from different resources (friends, family, neighbours, health professionals, internet). This study investigates the level of HL and eHL and the associations with other caregiving variables. The study used a descriptive correlational study design and the methodology followed 5 phases. Initially, two scoping and two literature reviews organised to identify available research. Secondly, tools not available in Greek or for the specific population of carers were validated. The third phase included the consensus meeting on the terminology of eHealth Literacy and Health Literacy. Then, the pilot and the full-scale study followed. In total, 174 primary carers of PwD, (76% women, n=132) and 67 secondary carers (family, friend or neighbour who provide support to the primary carer and to the care-recipient), participated in a descriptive correlational study. Primary carers completed a face to face survey for the level of HL, eHL, internet use, dementia-specific internet use, caregiving self-efficacy (SE), coping strategies, caregiving perceptions and social support. Secondary carers completed the survey for HL, eHL and demographics. In this study, primary carers report a high level of eHL (29.21/40, SD=4.8) and HL (13.64/16, SD=1.92). The above is also the case for the secondary carers (eHL=30.54/40, SD=4.34 and HL=13.09, SD=2.05). The cluster analysis presented with 3 carers’ profiles: 1) carer with High HL, eHL and SE 2) carers with problematic coping and negative caregiving attitudes 3) carers with High HL, eHL and a strong Social Network. Carers with higher HL were more likely to report higher score of eHL, SEOR and SE-BM. Carers with higher eHL were more likely to report higher score of positive perceptions towards caring and emotion-focused coping. Carers of PwD in this sample, report an adequate level of HL and eHL, as they may act on behalf of the care-recipient. Services designed to meet the needs of a population with this HL and eHL profile could assist in the sustainability of the web-based services. Furthermore, nurses and other health care professionals if they obtain the tools to identify informal carers with low HL, could provide more tailored services according to carers’ needs and enhance their HL skills.Middleton Nicos, Charalambous AndreasComplete

The association of health literacy and electronic health literacy with self-efficacy, coping, and caregiving perceptions among carers of people with dementia: research protocol for a descriptive correlational study

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

Health literacy and eHealth literacy and their association with other caring concepts among carers of people with dementia: A descriptive correlational study

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