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Papa, R., Efthymiou, A., Lamura, G., Piccinini, F., Onorati, G., Papastavrou, E., . . . Hanson, E. (2020). Review and Selection of Online Resources for Carers of Frail Adults or Older People in Five European Countries: Mixed-Methods Study. JMIR mhealth and uhealth, 8(6), Article ID e14618.
Open this publication in new window or tab >>Review and Selection of Online Resources for Carers of Frail Adults or Older People in Five European Countries: Mixed-Methods Study
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2020 (English)In: JMIR mhealth and uhealth, E-ISSN 2291-5222, Vol. 8, no 6, article id e14618Article, review/survey (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
JMIR Publications, Inc, 2020
Keywords
informal carers, mobile apps, websites, usability, reliability
National Category
Nursing
Research subject
Health and Caring Sciences, Health Informatics
Identifiers
urn:nbn:se:liu:diva-175033 (URN)10.2196/14618 (DOI)000540701200001 ()32554378 (PubMedID)
Available from: 2021-04-16 Created: 2021-04-16 Last updated: 2021-04-16
Andréasson, F., Andreasson, J. & Hanson, E. (2018). Developing a carer identity and negotiating everyday life through social networking sites: An explorative study on identity constructions in an online Swedish carer community. Ageing & Society, 38(11), 2304-2324
Open this publication in new window or tab >>Developing a carer identity and negotiating everyday life through social networking sites: An explorative study on identity constructions in an online Swedish carer community
2018 (English)In: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, Vol. 38, no 11, p. 2304-2324Article in journal (Refereed) Published
Abstract [en]

An overarching reason why carers do not utilise support services is that many people who perform care-giving do not necessarily self-identify as a carer. Understanding the development of carer identities is therefore crucial for the utilisation of different carer-focused health services. This study arose from the European Union-funded INNOVAGE project and aimed to describe how older carers conceptualise and understand their identity as carers on a Swedish online social forum. Theoretically the study adopts a constructionist approach and the method of netnography was applied. The findings reveal that a change in self-perception occurs in the process through which a carer role is acquired. The presence or absence of recognition for the older carers’ capacity, knowledge and life situation is seen as filtered through the needs of the care recipient, making the carer identity into an invisible self. This is not least the case when the identity is constructed in alliance with conceptual and moral obligations found within a marital discourse. Nevertheless, the opportunity for online communication may help to create a virtual space of social recognition through which different experiences attached to caring can be discussed. The significance of online communication is here understood as the possibility it presents for carers to be recognised by other carers. It is a process through which an invisible self can become visible.

Place, publisher, year, edition, pages
Cambridge University Press, 2018
National Category
Nursing Sociology
Research subject
Social Sciences, Sociology
Identifiers
urn:nbn:se:liu:diva-175035 (URN)10.1017/S0144686X17000551 (DOI)000446465900006 ()2-s2.0-85020271213 (Scopus ID)
Available from: 2017-06-08 Created: 2021-04-16 Last updated: 2021-04-16
Andréasson, F., Andreasson, J. & Hanson, E. (2017). Developing a carer identity and negotiating everyday life through social networking sites. Paper presented at 21st IAGG World Congress of Gerontology and Geriatrics, San Francisco, California, USA, July 23-27, 2017. Innovation in Aging, 1(Suppl_1), 465-466
Open this publication in new window or tab >>Developing a carer identity and negotiating everyday life through social networking sites
2017 (English)In: Innovation in Aging, E-ISSN 2399-5300, Vol. 1, no Suppl_1, p. 465-466Article in journal, Meeting abstract (Other academic) Published
Abstract [en]

Research highlights that a key overarching reason why family carers do not utilize support services is that many people who perform the duties of caregiving do not necessarily self-identify as a carer. Understanding the development of carer identities may thus be understood as crucial for the utilization of different health services directed towards carers. Based on the EU funded Innovage project, this project aims to describe and analyse how older carers supporting and caring for an older person understand and socially negotiate their life situation and identity as carers on a Swedish online social forum. Theoretically the project departs from a constructionist approach and methodologically it has been inspired by a specifically designed method for studying the cultures and communities that emerge from online computer-mediated or Internet-based communications, called netnography. The results indicate that in the process through which a carer role is acquired, a significant change in self-perception occurs. The presence or absence of recognition for the older carers’ capacity, is understood as filtered through the needs of the cared for person, making the carer identity into an invisible self. At the same time, the opportunity for online communication may help to create a virtual space of social recognition through which negative and positive experiences attached to caring can be discussed. The significance of online communication is here understood as the possibility to be recognized, and feel empowered by other carers.

Place, publisher, year, edition, pages
Oxford University Press, 2017
National Category
Sociology Nursing
Research subject
Social Sciences, Sociology
Identifiers
urn:nbn:se:liu:diva-175037 (URN)10.1093/geroni/igx004.1659 (DOI)
Conference
21st IAGG World Congress of Gerontology and Geriatrics, San Francisco, California, USA, July 23-27, 2017
Note

Poster

Available from: 2017-08-17 Created: 2021-04-16 Last updated: 2021-04-16
Andréasson, F., Hanson, E., Poli, A., Barbabella, F., Lancioni, C., Papa, R. & Lamura, G. (2016). The use of on-line social network and services by family carers with high digital skills: The case of the Swedish sample. In: : . Paper presented at The 23rd Nordic Congress of Gerontology (23 NKG), Tampere, Finland, June 19–22, 2016.
Open this publication in new window or tab >>The use of on-line social network and services by family carers with high digital skills: The case of the Swedish sample
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2016 (English)Conference paper, Oral presentation only (Other academic)
Abstract [en]

AIMS. The InformCare platform aimed to complement the offer of already available web services to carers through the provision of a new comprehensive package.

METHODS. 36 family carers were enrolled in Sweden and used the platform during the intervention. They could access the following web-based services: information resources; individual support via e-mail and private messages; group support via social network and forum. Periodical writing activities were asked to active users in the forum, alternating expressive writing (EW) and time management (TM) writing tasks.

FINDINGS. Users were predominantly older, female carers, who considered the web platform as a flexible tool, potentially accessible at anytime, which could empower users and improve their sense of solidarity and mutual learning.

CONCLUSIONS. Although results confirmed usefulness and appropriateness of implemented web services, some carers experienced problems in accessing and navigation, which required continuous technical support by web developers.

National Category
Social Work Nursing
Identifiers
urn:nbn:se:liu:diva-175041 (URN)
Conference
The 23rd Nordic Congress of Gerontology (23 NKG), Tampere, Finland, June 19–22, 2016
Available from: 2017-01-30 Created: 2021-04-16 Last updated: 2021-04-16
Barbabella, F., Efthymiou, A., Poli, A., Lancioni, C., Andréasson, F., Salzmann, B., . . . Lamura, G. (2015). A multilingual web platform supporting informal carers in 27 EU member states. In: Adrian Curaj & Ioana Trif (Ed.), Broader, bigger, better: AAL solutions for Europe. Proceedings of the 6th AAL Forum 2014: . Paper presented at 6th AAL Forum, BUCHAREST, ROMANIA 9-12 SEPTEMBER, 2014 (pp. 169-172). Bucharest: UEFISCDI
Open this publication in new window or tab >>A multilingual web platform supporting informal carers in 27 EU member states
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2015 (English)In: Broader, bigger, better: AAL solutions for Europe. Proceedings of the 6th AAL Forum 2014 / [ed] Adrian Curaj & Ioana Trif, Bucharest: UEFISCDI , 2015, p. 169-172Conference paper, Published paper (Refereed)
Abstract [en]

Informal care is a hot topic in research and policy agendas at European and national level, since it greatly contributes to the sustainability and efficiency of national health care systems. A specific intervention – part of the wider INNOVAGE project funded by FP7 – was planned for developing and testing a new multilingual web platform for informal carers of dependent older people in the EU-27. Preliminary results of the pilot study, conducted in Italy, Germany and Sweden will be discussed. The final platform will be accessible in all official languages of the EU-27 and publicly available in spring 2015.

Place, publisher, year, edition, pages
Bucharest: UEFISCDI, 2015
Keywords
informal care, innovation, web-based services
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Gerontology, specialising in Medical and Health Sciences Information Systems, Social aspects
Research subject
Medicine, Gerontology; Health and Caring Sciences
Identifiers
urn:nbn:se:liu:diva-175042 (URN)978-973-0-20119-2 (ISBN)
Conference
6th AAL Forum, BUCHAREST, ROMANIA 9-12 SEPTEMBER, 2014
Available from: 2016-03-25 Created: 2021-04-16
Andréasson, F., Hanson, E., Lamura, G., Barbabella, F., Lancioni, C., Papa, R., . . . Efthymiou, A. (2015). Anhörigstöd via internet: InformCare. In: : . Paper presented at Anhörigriksdagen 2015: "Olika men ändå lika", Varberg, Sweden, May 5-6, 2015.
Open this publication in new window or tab >>Anhörigstöd via internet: InformCare
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2015 (Swedish)Conference paper, Oral presentation only (Other (popular science, discussion, etc.))
National Category
Nursing Social Work Gerontology, specialising in Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-175043 (URN)
Conference
Anhörigriksdagen 2015: "Olika men ändå lika", Varberg, Sweden, May 5-6, 2015
Available from: 2017-01-30 Created: 2021-04-16 Last updated: 2021-04-16
Andréasson, F. & Hanson, E. (2015). Dissemination event Sweden. In: : . Paper presented at Providing online support services to informal carers, care professionals and employers across Europe, EU event, Brussels May 6-7, 2015.
Open this publication in new window or tab >>Dissemination event Sweden
2015 (English)Conference paper, Oral presentation only (Other (popular science, discussion, etc.))
National Category
Gerontology, specialising in Medical and Health Sciences Social Work Nursing
Identifiers
urn:nbn:se:liu:diva-175044 (URN)
Conference
Providing online support services to informal carers, care professionals and employers across Europe, EU event, Brussels May 6-7, 2015
Available from: 2017-01-30 Created: 2021-04-16 Last updated: 2021-04-16
Andréasson, F., Hanson, E., Lancioni, C., Papa, R., Barbabella, F. & Lamura, G. (2015). Online support for carers: using a social forum and social network as a means of developing the role of informal caregiving. In: Presented at the 6th International Carers Conference - Care and caring: future proofing the new demographics, Gothenburg, Sweden, September 3-6, 2015: . Paper presented at The 6th International Carers Conference - Care and caring: future proofing the new demographics, Gothenburg, Sweden, September 3-6, 2015.
Open this publication in new window or tab >>Online support for carers: using a social forum and social network as a means of developing the role of informal caregiving
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2015 (English)In: Presented at the 6th International Carers Conference - Care and caring: future proofing the new demographics, Gothenburg, Sweden, September 3-6, 2015, 2015Conference paper, Oral presentation only (Other academic)
National Category
Social Work Nursing Gerontology, specialising in Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-175047 (URN)
Conference
The 6th International Carers Conference - Care and caring: future proofing the new demographics, Gothenburg, Sweden, September 3-6, 2015
Note

“Technology-Enabled Care and Support" INNOVAGE seminar

Available from: 2017-01-30 Created: 2021-04-16 Last updated: 2021-04-16
Lindqvist, G., Magnusson, L., Andréasson, F., Broling, L. & Hanson, E. (2015). Slutrapport SAFE, Steg 1. Utmaningsdriven innovation: Hälso- och sjukvård: Ökad delaktighet och inflytande, trygghet och säkerhet för äldre och deras anhöriga med hälsostödjande e-tjänster. VINNOVA
Open this publication in new window or tab >>Slutrapport SAFE, Steg 1. Utmaningsdriven innovation: Hälso- och sjukvård: Ökad delaktighet och inflytande, trygghet och säkerhet för äldre och deras anhöriga med hälsostödjande e-tjänster
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2015 (Swedish)Report (Other academic)
Place, publisher, year, edition, pages
VINNOVA, 2015. p. 14
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:liu:diva-175048 (URN)
Projects
VINNOVA, SAFE projektet
Available from: 2016-02-12 Created: 2021-04-16 Last updated: 2021-04-21
Andréasson, F., Hanson, E., Lancioni, C., Papa, R., Barbabella, F. & Lamura, G. (2015). The INNOVAGE-Eurocarers platform and current ICT-based services for informal carers of older people in Sweden. In: : . Paper presented at 8th International Association of Gerontology and Geriatrics (IAGG) European Region (ER) Congress, Symposium "Implementing web-based support services for family carers of older people in Europe: The INNOVAGE-Eurocarers web platform", Dublin, Ireland, April 23-26, 2015.
Open this publication in new window or tab >>The INNOVAGE-Eurocarers platform and current ICT-based services for informal carers of older people in Sweden
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2015 (English)Conference paper, Oral presentation only (Other academic)
Abstract [en]

Background: Different support services for family carersare available in Sweden through information andcommunication technologies (ICTs) since late 1990s, likeACTION, My Joice, IPPI, ‘The Gap’, and Carer Sweden’son-line ‘Carer’s Book’. The INNOVAGE-Eurocarersplatform aimed to complement the offer of web services tocarers through the provision of a new tailored package.

Methods: The Swedish pilot test enrolled around 50carers through contacts with professionals working withcarers in different municipalities. They could access thefollowing web-based services: information resources;individual support via e-mail and private messages; groupsupport via social network and forum. Periodical writingactivities were asked to active users in the forum,alternating expressive writing (EW) and time management(TM) writing tasks. Periodical reminders were sent in orderto increase user involvement.

Results: Users were predominantly older, female carers,of which two thirds were over 65 years old. The webplatform was perceived as a flexible tool, potentiallyaccessible at any time, which gave users the possibility toexploit their experience as carers with others in similarsituations. This peer exchange seemed to improve selfempowerment,sense of solidarity and mutual learning.However, usage of the web platform was limited due to thelow level of digital skills of some carers.

Conclusions: Although results confirmed usefulness andappropriateness of implemented web services, it isfundamental to address the issue of usability andaccessibility in order to ensure a wider accessibility. Anoption might be to offer initial digital skill training andcontinuous technical support for computer novices.

National Category
Gerontology, specialising in Medical and Health Sciences Nursing Social Work
Identifiers
urn:nbn:se:liu:diva-175050 (URN)
Conference
8th International Association of Gerontology and Geriatrics (IAGG) European Region (ER) Congress, Symposium "Implementing web-based support services for family carers of older people in Europe: The INNOVAGE-Eurocarers web platform", Dublin, Ireland, April 23-26, 2015
Available from: 2017-01-30 Created: 2021-04-16
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-7609-4822

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