Abstract AimTo describe the co-designing process of an online support programme with and for informal carers of people with heart failure.DesignA co-design process built on core concepts and ideas embedded in co-design methodology.Data sources Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and approval of the final version of the support programme.Outcomes The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal.Conclusion Co-design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process.Relevance to clinical practice Emphasizing equal involvement of end users (e.g. carers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning opportunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme provides the opportunity to address current challenges regarding scarce resources and the lack of healthcare personnel.Reporting methodsConsolidated criteria for reporting qualitative research (COREQ).Patient or public contributionBoth informal carers and content creators were involved in developing the support programme.

The aim of the thesis has been a) to analyse how informal care influences the identity of carers and care recipients, their sense of couplehood and social health, and b) to explore the use of Information and Communication Technology (ICT) in the context of informal care and the everyday lives of older people. Study I focused on how older carers conceptualised their identity as carers on a Swedish online social forum, using a netnographic methodology. The findings indicated a change in self-perception as the carer role was acquired. Carers’ capacities were filtered through the needs of the care recipient, making their carer identities into invisible selves. The findings revealed that online communication had the potential to create a virtual space of social recognition. Study II aimed to reflect on carers’ experiences of participation in a co-design process consisting of user group sessions with carers and researchers. The goal was to develop a web-based support programme for carers. The findings emphasised a need to consider carers’ lifeworlds and to develop flexible human-centred design methodologies, that are able to balance carers’ needs and ideas with proposed research outcomes. Studies III and IV utilised an ethnographic methodology. In study III, the notion of couplehood in informal care was analysed. The findings showed that in the process of becoming a carer and a care recipient previous (often gendered) responsibilities were re- negotiated and new practicalities emerged. Although these changes were understood as a natural part of family life, they nevertheless led to changes in the (power) balance between spouses, expressed in terms of a professionalised relationship and a sense of social isolation. ICT was used as a means to get a respite from caring and uphold a social connection with others. In study IV, the social implications and consequences of spousal informal care and carers and care recipients’ experiences of illness and the ill body was explored. The findings showed that the participants experienced barriers to living life as before. Thoughts about or the presence of ill and “leaking” bodies thus lead to “self-chosen” social isolation or social distancing by others. The thesis highlights that informal care needs to be understood as an identity forming practice, having a significant impact on involved parties’ sense of couplehood, their social health and that ICT can contribute to ease carers’ and care recipients’ daily life.

Purpose – The purpose of this paper is to reflect on carers’ experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodological challenges and opportunities that occurred in the user group sessions conducted.

Design/methodology/approach – This research adopt an explorative design studying a co-design process to develop an information and communication technology based support programme for and with CPwHF. Habermas’ concepts of lifeworld and system are used as a theoretical framework to analyse the co-design process employed in the study.

Findings – Reflecting on the co-design approach adopted, the findings highlight the methodological challenges that arise with carer involvement and the possible tensions that occur between researchers’ ambitions to include users in the design process, and the goal of developing a product or service, in the different phases of the design process.

Originality/value – Findings highlight that there is a tension between the system and lifeworld in the co-design process which are not totally compatible. The paper highlights that there is a need to develop flexible and reflexive human-centred design methodologies, able to meet carers’ needs and ideas, and at the same time balance this with proposed research outcomes.

Purpose

The purpose of this paper is to reflect on carers’ experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodological challenges and opportunities that occurred in the user group sessions conducted.

Design/methodology/approach

This research adopt an explorative design studying a co-design process to develop an information and communication technology based support programme for and with CPwHF. Habermas’ concepts of lifeworld and system are used as a theoretical framework to analyse the co-design process employed in the study.

Findings

Reflecting on the co-design approach adopted, the findings highlight the methodological challenges that arise with carer involvement and the possible tensions that occur between researchers’ ambitions to include users in the design process, and the goal of developing a product or service, in the different phases of the design process.

Originality/value

Findings highlight that there is a tension between the system and lifeworld in the co-design process which are not totally compatible. The paper highlights that there is a need to develop flexible and reflexive human-centred design methodologies, able to meet carers’ needs and ideas, and at the same time balance this with proposed research outcomes.

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.

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.

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.

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.

Background: Different support services for family carers are available in Sweden through information and communication technologies (ICTs) since late 1990s, like ACTION, My Joice, IPPI, ‘The Gap’, and Carer Sweden’s online ‘Carer’s Book’. The INNOVAGE-Eurocarers platform aimed to complement the offer of web services to carers through the provision of a new tailored package.

Methods: The Swedish pilot test enrolled around 50 carers through contacts with professionals working with carers in different municipalities. 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. Periodical reminders were sent in order to increase user involvement.

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

Conclusions: Although results confirmed usefulness and appropriateness of implemented web services, it is fundamental to address the issue of usability and accessibility in order to ensure a wider accessibility. An option might be to offer initial digital skill training and continuous technical support for computer novices.

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.

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.

Background: Different support services for family carers are available in Sweden through information and communication technologies (ICTs) since late 1990s, like ACTION, My Joice, IPPI, ‘The Gap’, and Carer Sweden’s online ‘Carer’s Book’. The INNOVAGE-Eurocarers platform aimed to complement the offer of web services to carers through the provision of a new tailored package.

Methods: The Swedish pilot test enrolled around 50 carers through contacts with professionals working with carers in different municipalities. 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. Periodical reminders were sent in order to increase user involvement.

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

Conclusions: Although results confirmed usefulness and appropriateness of implemented web services, it is fundamental to address the issue of usability and accessibility in order to ensure a wider accessibility. An option might be to offer initial digital skill training and continuous technical support for computer novices.

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.

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.

Building on an ethnographic approach, this study aims to explore how the notion of couplehood and family life is understood and negotiated in everyday life by older carers and their spouses. Inspired by Morgan’s perspective on the doing of family life, and Hochschild’s analysis of emotion work and feeling rules, the article shows how the process of becoming a carer/care recipient creates a new life situation for couples. The findings show that gendered tasks of family life such as housework and financial responsibilities change between spouses, and new practicalities emerge. This in turn changes the power balance between the spouses and how they do couplehood. The findings also reveal how the participants’ sense of we and I are negotiated to do family life, with regards to their health, sense of moral obligation, personal autonomy, love and caregiving. A sense of social isolation is apparent, and social media, apps and online games are sometimes used to create digital spaces in which participants can maintain connections with friends and children, find solitude and regain energy by getting a temporary pause from spousal informal care. Such strategies enable couples to find balance and a sense of autonomy in their lives as a family.

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.

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.

Background: Family carers can be negatively influenced by their situation, in terms of stress, social isolation, economic constraints and other difficulties. Web-based services addressing carers’ needs represent an efficient support. The goal of the INNOVAGE work package 3(WP3) study was to develop and test a new multilingual web platform for supporting family carers of older people, to be implemented in 27 European countries.

Methods: A review of good practices and a consultation with stakeholders were conducted for identifying most appropriate types of services to be developed and tested. The prototype of web platform included information resources and interactive services for both peer and professional support. A convenient, overall sample of around 130 family carers was enrolled in three countries (Italy, Germany and Sweden) and could access services for 12-17 weeks. Data were collected through questionnaires and focus groups concerning impact onquality of life, social support, self-perception of carer’s role, as well as usability, usefulness and appropriateness of services.

Results: Active users were generally satisfied with support (information, advice, counselling) provided by moderators (social workers or psychologists) and peers. Usability and appropriateness were confirmed, although some refinements were suggested and users with low digital skills often needed technical support. A portion of the sample remained inactive even if stimulation strategies were adopted.

Conclusions: The pilot study confirmed the INNOVAGE Eurocarers web platform is a useful tool for family carers. Some challenges still exist for implementation in relation to digital skills required and users’ preferences on services at country level.

Background: Family carers can be negatively influenced by their situation, in terms of stress, social isolation, economic constraints and other difficulties. Web-based services addressing carers’ needs represent an efficient support. The goal of the INNOVAGE work package 3(WP3) study was to develop and test a new multilingual web platform for supporting family carers of older people, to be implemented in 27 European countries.

Methods: A review of good practices and a consultation with stakeholders were conducted for identifying most appropriate types of services to be developed and tested. The prototype of web platform included information resources and interactive services for both peer and professional support. A convenient, overall sample of around 130 family carers was enrolled in three countries (Italy, Germany and Sweden) and could access services for 12-17 weeks. Data were collected through questionnaires and focus groups concerning impact onquality of life, social support, self-perception of carer’s role, as well as usability, usefulness and appropriateness of services.

Results: Active users were generally satisfied with support (information, advice, counselling) provided by moderators (social workers or psychologists) and peers. Usability and appropriateness were confirmed, although some refinements were suggested and users with low digital skills often needed technical support. A portion of the sample remained inactive even if stimulation strategies were adopted.

Conclusions: The pilot study confirmed the INNOVAGE Eurocarers web platform is a useful tool for family carers. Some challenges still exist for implementation in relation to digital skills required and users’ preferences on services at country level.

This contribution provides insights from one of the four social innovations of the INNOVAGE project, focused on the development of the InformCare web platform for supporting informal caregivers of older people in Europe. The platform included information resources on different topics (major diseases in older age, public care services and benefits, coping and reconciliation strategies etc.) and interactive services for professional and peer support (dedicated social network, forum, chat and videochat). The design phase was based on a consultation process involving almost 200 stakeholders and on user tests. The pilot phase was carried out as a mixed-methods study in Germany, Italy and Sweden, which recruited totally 118 caregivers who could access the InformCare platform for 3 months. Positive findings led to its refinement and implementation in 27 European countries. Today, the platform is publicly accessible (www.eurocarers.org/informcare) in 32 versions and 23 languages, with over 2,500 web pages for informal caregivers.

AIMS. The goal of this study was to develop and test a new multilingual web platform for supporting family carers of older people by means of on-line information resources and peer and professional support.

METHODS. A convenient sample of family carers was enrolled in three countries (Italy, Germany and Sweden) and could access services for 3 months. 94 family carers used the web platform. Data were collected through questionnaires and focus groups.

FINDINGS. Active users were generally satisfied with support (information, advice, counselling) provided by moderators (social workers or psychologists) and peers. Usability and appropriateness were confirmed, although some refinements were suggested and users with low digital skills often needed technical support.

CONCLUSIONS. The pilot study confirmed web-based support services can be a useful tool for family carers. Some challenges still exist for implementation in relation to digital skills required and users’ preferences on services at country level.

AIMS. The goal of this study was to develop and test a new multilingual web platform for supporting family carers of older people by means of on-line information resources and peer and professional support.

METHODS. A convenient sample of family carers was enrolled in three countries (Italy, Germany and Sweden) and could access services for 3 months. 94 family carers used the web platform. Data were collected through questionnaires and focus groups.

FINDINGS. Active users were generally satisfied with support (information, advice, counselling) provided by moderators (social workers or psychologists) and peers. Usability and appropriateness were confirmed, although some refinements were suggested and users with low digital skills often needed technical support.

CONCLUSIONS. The pilot study confirmed web-based support services can be a useful tool for family carers. Some challenges still exist for implementation in relation to digital skills required and users’ preferences on services at country level.

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).

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).

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.

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 peoples 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 samples 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.

The INNOVAGE project is dedicated to developing, surveying and cataloguing, social innovations for older people. Four new innovations will be developed and tested: a) social innovation for user – driven housing of older people, b) a web-platform for informal carers of older people, c) social intervention for improving obesity in old age, d) social innovation for activation of people with dementia living in long term care institutions. Italian National Institute of Health and Science on Aging (INRCA) (www.inrca.it) and Eurocarers Association (www.eurocarers.org) are the partners responsible for developing and implementing a multilingual web platform for informal carers in 27 EU Member States. An innovAge carers associations network has been established based on the Eurocarers organisations network. National organizations, members of INNOVAGE network, are responsible for developing national information and disseminating the web platform at national level. Athens Association of Alzheimer‘s Disease and Related Disorders is an official member of the INNOVAGE network and participates in the development of the Greek version of the INNOVAGE web platform. The platform will provide to end-users services such as: national information on care and support services, legal and financial information, information about the most common impairments of older people, strategies and information about coping with caregiving. Interactive services, social network, forum, chat, video conferencing tools will be also available. The Greek version of the web platform will be available in May 2015.

The INNOVAGE project is dedicated to developing, surveying and cataloguing, social innovations for older people. Four new innovations will be developed and tested: a) social innovation for user – driven housing of older people, b) a web-platform for informal carers of older people, c) social intervention for improving obesity in old age, d) social innovation for activation of people with dementia living in long term care institutions. Italian National Institute of Health and Science on Aging (INRCA) (www.inrca.it) and Eurocarers Association (www.eurocarers.org) are the partners responsible for developing and implementing a multilingual web platform for informal carers in 27 EU Member States. An innovAge carers associations network has been established based on the Eurocarers organisations network. National organizations, members of INNOVAGE network, are responsible for developing national information and disseminating the web platform at national level. Athens Association of Alzheimer‘s Disease and Related Disorders is an official member of the INNOVAGE network and participates in the development of the Greek version of the INNOVAGE web platform. The platform will provide to end-users services such as: national information on care and support services, legal and financial information, information about the most common impairments of older people, strategies and information about coping with caregiving. Interactive services, social network, forum, chat, video conferencing tools will be also available. The Greek version of the web platform will be available in May 2015.

Introduction: Involving patients and carers in the development of blended collaborative care (BCC) interventions for multimorbid heart failure (HF) patients is recommended but rarely practised, and research on the patient perspective is scarce. The aim of this study is to investigate patients' and carers' care-related needs and preferences to better customize a novel international BCC intervention.

Methods: A qualitative study design using framework analysis was employed. The study was performed in accordance with the EQUATOR standards for reporting qualitative research (SRQR). Patients aged at least 65 years with HF and at least two other physical diseases as well as their carers completed semistructured interviews in Germany, Italy, and Denmark. Based on these interviews, personas (prototype profiles of patients and carers) were created.

Results: Data from interviews with 25 patients and 17 carers were analysed. Initially, seven country-specific personas were identified, which were iteratively narrowed down to a final set of 3 personas: (a) the one who needs and wants support, (b) the one who has accepted their situation with HF and reaches out when necessary, and (c) the one who feels neglected by the health care system. Carers identifying with the last persona showed high levels of psychological stress and a high need for support.

Discussion: This is the first international qualitative study on patients' and carers' needs regarding a BCC intervention using the creation of personas. Across three European countries, data from interviews were used to develop three contrasting personas. Instead of providing "one size fits all" interventions, the results indicate that BCC interventions should offer different approaches based on the needs of individual patients and carers. The personas will serve as a basis for the development of a novel BCC intervention as part of the EU project ESCAPE (Evaluation of a patient-centred biopSychosocial blended collaborative CAre Pathway for the treatment of multimorbid Elderly patients).

Using ethnographic data, this article aims to analyse the provision of informal care by asylum-seekers in Sweden and how this intersects with the(ir) asylum process. The article argues that asylum-seekers are framed by the Swedish welfare system and immigration authorities as ungrievable and deportable, which not only impedes their access to formal care systems and values, but also creates a strong need for informal care. Further, it is suggested that the informal care provided by asylum-seekers should be included in current debate on informal care and its impact on people’s lives. 

AimTo describe the life situation of spouses having a partner with heart disease and adolescents living at home.DesignQualitative inductive design.MethodParticipants (n = 22) were included from three Scandinavian countries. Semi-structured interviews were analysed using thematic analysis with an inductive and latent approach.ResultsThree themes were derived. 'Being in spousal and parental role transition' described how daily life had been affected and parental responsibilities had been doubled due to their partner's heart disease. 'Living with unpredictability and insecurity' included how the unpredictable illness trajectory caused worries and affected the well-being of the family. 'Managing a challenging life situation' highlights how spouses coped with their partners' heart disease and adapted to a new life situation.ConclusionYoung spouses' life situation was greatly affected by their partner's heart disease, resulting in increased responsibilities and double parenthood. Having a positive attitude and mindset towards life was used as a strategy to cope with the changed life situation and find a new way of life.Implications for the Profession and/or Patient CareAll family members are affected by heart disease. Spouses needed additional professional support and guidance on how to involve the children when a parent is ill.Impacts This study highlights how young spouses, with adolescents living at home, experience their life situation. The life situation is unpredictable due to the partner's heart disease, as they must handle both caring for their partner and taking on double parenthood. Research involving family members can improve person- and family-centred care and treatment outcomes in health care and society.Reporting MethodCOREQ checklist was used preparing the manuscript.Patient or Public ContributionData collection included interviews with spouse.What Does This Paper Contribute to the Wider Global Clinical Community?By highlighting the spouses changed life situation due to heart disease and the importance of including them in health care.

Vilka frågor bör framtida hjälpmedelsförsörjning i Kalmar län beakta?. Hjälpmedelsförsörjning är en komplex verksamhet. Olika län och kommuner i Sverige har hittat olika sätta att bedriva verksamheten. Genomgående är behovet och nödvändigheten av samverkan - samverkan mellan och inom kommunerna, mellan professioner och brukar, samverkan mellan landsting och privata aktörer.

Vilka frågor bör framtida hjälpmedelsförsörjning i Kalmar län beakta?. Hjälpmedelsförsörjning är en komplex verksamhet. Olika län och kommuner i Sverige har hittat olika sätta att bedriva verksamheten. Genomgående är behovet och nödvändigheten av samverkan - samverkan mellan och inom kommunerna, mellan professioner och brukar, samverkan mellan landsting och privata aktörer.

This presentation discusses how new technologies support family carers of older people with reference to the Eurocarers’ hub ‘InformCare’, the web-platform of support services for carers of older people co-funded by the European Union within the INNOVAGE project. After highlighting the status of technology-based services for carers in Europe, the main features of InformCare will be demonstrated. Tested in three European countries (Germany, Italy and Sweden), this tool provides a standardised, integrated, multilingual and culturally adapted set of on-line information and interactive services addressing carers’ needs and preferences which are available for the first time in 27 Member States. The implementation followed a pilot test with 117 carers, showing improvements in carers’ self-awareness and empowerment over a 3 month period. However, to ensure optimal benefit from InformCare, appropriate training and promotion campaigns are needed in order to overcome low digital literacy skills and lack of self-recognition characterising many carers.

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.