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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.
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.
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.
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) (
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).
A significant portion of adult individuals worldwide are experiencing increasing responsibilities of, and effects from being involved in, informal care for relatives with long-term care needs. For instance, it is estimated that the number of family caregivers over 18 years of age who care for older people and disabled adults are around 58 million in the European Union (EU) (15% of the adult population) [
Recently, research in the European Union has increasingly concentrated on the development and testing of innovative solutions for providing support services to family caregivers of older people, especially in terms of Web-based programs with psychoeducational and psychotherapeutic purposes [
So far, however, the level of development and coverage of Web-based programs for family caregivers has been rather low and fragmented in the European Union, with a number of small initiatives having limited scope and being sustained by poor funds and resources [
As part of the wider INNOVAGE project, cofunded by the European Union, we addressed this systematic lack of online supports for caregivers by promoting a new social innovation at the European level (ie, an innovative solution to meet health and social needs of caregivers, to sustain their empowerment, and to improve their well-being) [
Thus, this article reports the results from the pilot-testing in three European countries of a multicomponent, Web-based intervention delivered through the InformCare Web platform. The work is based on the assumption that caregiving activities can lead the caregiver to experience both negative feelings, such as subjective burden, stress, and depression [
The multicenter pilot study was conducted in Italy, Sweden, and Germany, and employed a mixed-methods, sequential explanatory design. Structured questionnaires with quantitative measures of the main outcomes were administered to enrolled family caregivers both at baseline and at 3-months postintervention; the study took place from April to July 2014. Postintervention, results from the structured questionnaires were used to organize a focus group in each country, at which a subgroup of users participated. The aim was to gain a more in-depth understanding of caregivers’ experiences, support the final analysis, and better interpret the results. The design and methods of the study were evaluated by competent local ethics committees in each country.
The design and development of the Web platform was based on a review of the main needs and preferences expressed by family caregivers [
Individual user tests with 10 family caregivers were conducted on a first prototype of the Web platform in order to gain preliminary insights on its usability. Based on the feedback received, the platform was further refined for the pilot intervention.
In all three countries, the Web platform included both information resources and interactive services areas, developed in their national official languages. Access was restricted by means of an individual username and password given to each caregiver at the beginning of the study. An overview of the main characteristics of the information and services and a screenshot of the home page are provided in
Within the information resources area, four main sections were developed in order to improve knowledge and self-awareness, mainly concerning the caregiver’s role, coping strategies, and support available. Contents regarding the national range of services, benefits, and contacts available were appositely written by project staff and double-checked by external experts. Contents concerning general information on diseases, coping, and reconciliation strategies were provided by selected reliable websites in English managed by nonprofit organizations with a long-standing expertise in this field. Translation into national languages was carried out by national project staff and double-checked by senior project staff.
The interactive services area enabled communication among caregivers, as well as between caregivers and professional staff. The area included a set of Web tools: a dedicated social network, a forum, a private message feature, a chat feature, and a videochat feature. Interactive services were aimed specifically at improving caregivers’ psychological well-being, self-efficacy, and self-perception of caregiving situation. These services were delivered by means of individual and group online support provided in terms of information, advice, counseling, and emotional and social support. In each country, an interactive services area was managed by a professional moderator—a psychologist in Italy, and social workers in Sweden and Germany—who acted as an online counselor.
Some additional structured services and tasks were also proposed in order to better customize service provision to the sociocultural peculiarities and digital skills of national samples (see
Guidelines for moderators, who were trained prior to the intervention, were developed based on the main recommendations available in the field [
The recruitment process adopted a convenience sample approach. Brochures and promotional materials were distributed in order to reach caregivers through available institutional and informal channels. In Italy, all participants were recruited through the Alzheimer Evaluation Unit at INRCA in Ancona, thus including family caregivers of people with Alzheimer’s disease or other dementias. In Sweden, caregivers were enrolled by exploiting existing networks of the NKA, the Swedish Dementia Association, Carers Sweden, and Linnaeus University in Kalmar and Växjö. In Germany, the nonprofit caregiver organization wir pflegen e.V. and local social care services contributed to recruitment by approaching family caregivers through their networks and websites.
Selection criteria for including family caregivers in the study were the following: (1) providing informal caregiving in activities of daily living (ADLs) and/or instrumental activities of daily living (IADLs) for an older person aged 60 years or more; (2) having basic digital skills, allowing the use of an Internet browser on a computer and/or mobile device; (3) having ordinary access to a computer and/or mobile device with Internet connection.
Screenshot of the home page of the InformCare Web platform for family caregivers of older people (example of Italian version).
Characteristics of information resources and interactive services.
Resources and services | Characteristics | ||
Caring for the older person | Symptoms, diagnosis, and treatments of the 10 most common chronic conditions |
||
Your own needs | Coping strategies |
||
Support by the state | Legal issues (eg, responsibility, rights, and competency) |
||
Get help | Contacts for crisis or emergency |
||
Social network | Channel: asynchronous group communication |
||
Forum | Channel: asynchronous group communication |
||
Private messages/emails | Channel: asynchronous interpersonal or group communication |
||
Chat and videochat/ |
Channel: synchronous interpersonal or group communication |
||
E-learning course and virtual desk (Italy) | E-learning: multimedia training units with a focus on caregiving activities and long-term care services |
||
Writing tasks in forum (Sweden) | Biweekly writing exercises alternating time management and emotional writing, managed by the moderator | ||
Videoconferencing groups (Germany) | Two weekly videoconferencing groups with three family caregivers each, managed by the moderator |
At the outset, each participant caregiver signed an informed consent form and received a guide for accessing and using the platform in both paper and electronic versions. Preliminary face-to-face or videoconferencing meetings were organized on an individual or group basis for presenting and showing the platform.
Participants were invited to use the Web platform whenever they needed to find information, ask advice, or get support. Stimulation strategies were planned according to social and cultural preferences (eg, short message service [SMS] text messages and emails).
Technical support was guaranteed by both the moderator—for immediate help and clarification—and the Web developer—for fixing technical problems. A set of earphones was given to each caregiver allowing for the use of videochat and videocommunication tools.
The primary outcome measures were represented by the caregivers’ psychological well-being and self-perception of both negative and positive aspects of caregiving. A secondary outcome was the social support the caregiver perceived from significant others and from services. Variables were measured with a structured questionnaire administered to all participants, both prior to and after the 3-month intervention, through an online system or, if requested, by post or email.
Sociodemographic characteristics and health problems of family caregivers and of their cared-for older persons—with the caregiver answering as a proxy—were asked through ad hoc categorical or binary questions. Other details were also asked about the care setting and access to public services (eg, home care and care allowances) and private services (eg, privately employed care assistant). As for the older person, ADLs and IADLs were measured, respectively, by means of the Barthel Index [
Among the outcome measures, the 5-item World Health Organization Well-being Index (WHO-5) [
The Carers of Older People in Europe (COPE) Index (15 items) [
Furthermore, the Multidimensional Scale of Perceived Social Support (MSPSS) (12 items) [
Data about access to the information resources area of the platform were tracked through Google Analytics software. The number of times participants used single features of each interactive service were self-reported, then summed and categorized for each service as follows: never (no use), low use (6-12 times), and medium-high use (more than 12 times).
The Kolmogorov-Smirnov test was used to check for normal distribution of quantitative data. Data were expressed as frequencies for categorical variables, and as median (interquartile range [IQR]) and mean (SD) for continuous ones. Bivariate analysis was performed between the country variable and both sociodemographic characteristics and usage of the platform using the chi-square or Kruskal-Wallis tests for categorical or continuous variables, respectively. Comparison of paired data—medians before and after the intervention—on the primary outcome variables was carried out by the nonparametric Wilcoxon signed-rank test for dependent samples; effect size (
A focus group was organized in each country after the intervention for further evaluation, especially with regard to the aspects of self-efficacy and support received online. Standard operative guidelines and a common set of topics to be covered were adopted for all focus groups, including the following: (1) appropriateness and usefulness of the intervention to meet own needs, (2) personal evaluation of using online services, and (3) perceived changes and improvements connected to the use of the services. Moderators of focus groups were senior project staff, whereas other trained researchers participated as observers and note takers.
Participants constituted a subgroup of the overall sample of family caregivers who used the platform. All focus groups took approximately 90-120 minutes; discussions were audiotaped and transcribed, with the support of field notes. Transcriptions and field notes were used for a conventional content analysis [
The analysis of qualitative data integrated quantitative results in an explanatory sequential process [
Overall, 123 family caregivers were initially recruited to the study—59 in Italy, 44 in Sweden, and 20 in Germany—completing both the informed consent form and baseline questionnaire. A total of 5 participants dropped out during the intervention—1 in Italy, 3 in Sweden, and 1 in Germany—due to the death of the older person, changed life circumstances, or lack of time. At the end of the intervention, 94 out of 118 caregivers (79.7%) had accessed the Web platform at least once—42 in Italy, 36 in Sweden, and 16 in Germany.
Family caregivers who used the Web platform at least once were mostly women (64/94, 68%) with a median age of 58 years (IQR 51-69). In Italy, participants were mostly children and children-in-law of the older person, with low confidence with the Internet and high participation rates in the labor market, providing medium-low intensity of informal care. German caregivers were mostly unemployed children or children-in-law with a medium-high education, whereas the Swedish subsample included mostly retired spouses with high education.
Concerning the information resources area, German and Swedish users made more visits than Italian ones in absolute terms (
Characteristics of older persons, family caregivers, and care settings by country.
Participant and setting characteristics | Italy |
Sweden |
Germany |
Total |
|||
Gender (woman), n (%) | 33 (79) | 13 (36) | 11 (69) | 57 (61) | <.001 | ||
Age (years), median (IQRb) | 82 (76-87) | 76 (72-82) | 82 (69-87) | 80 (74-85) | .03 | ||
ADLc index, median (IQR) | 15 (11-18) | 11 (4-17) | 5 (1-8) | 13 (5-18) | <.001 | ||
IADLd index, median (IQR) | 4 (2-6) | 4 (2-6) | 6 (4-6) | 4 (2-6) | .05 | ||
Gender (woman), n (%) | 28 (67) | 26 (72) | 10 (63) | 64 (68) | .73 | ||
Age (years), median (IQR) | 53 (47-58) | 68 (57-73) | 56 (53-67) | 58 (51-69) | <.001 | ||
<.001 | |||||||
Spouse/partner | 1 (2) | 27 (75) | 3 (19) | 31 (34) | |||
Child/child-in-law | 31 (74) | 7 (19) | 10 (63) | 48 (51) | |||
Other | 10 (24) | 2 (6) | 3 (19) | 15 (16) | |||
Children (yes), n (%) | 31 (74) | 30 (83) | 9 (56) | 70 (75) | .20 | ||
Grandchildren (yes), n (%) | 10 (24) | 22 (61) | 2 (13) | 34 (36) | <.001 | ||
.11 | |||||||
Bad | 1 (2) | 4 (11) | 2 (13) | 7 (7) | |||
Fair | 13 (31) | 17 (47) | 8 (50) | 38 (40) | |||
Good | 28 (67) | 15 (42) | 6 (38) | 49 (52) | |||
<.001 | |||||||
Low | 9 (21) | 3 (8) | 2 (13) | 14 (15) | |||
Medium | 25 (60) | 7 (19) | 5 (31) | 37 (39) | |||
High | 8 (19) | 26 (72) | 9 (56) | 43 (46) | |||
Employment (yes), n (%) | 25 (60) | 15 (42) | 4 (25) | 44 (47) | .04 | ||
.002 | |||||||
Same household | 9 (21) | 24 (67) | 8 (50) | 41 (44) | |||
Within walking distance | 13 (31) | 4 (11) | 5 (31) | 22 (23) | |||
Beyond walking distance | 20 (48) | 8 (22) | 3 (19) | 31 (33) | |||
<.001 | |||||||
None/low | 10 (24) | 1 (3) | 1 (6) | 12 (13) | |||
Medium | 24 (57) | 8 (22) | 8 (50) | 40 (43) | |||
High | 8 (19) | 27 (75) | 7 (44) | 42 (45) | |||
Informal care provided per week (hours), median (IQR) | 12 (6-24) | 32 (6-70) | 30 (9-144) | 15 (6-40) | .02 | ||
Duration of caregiving period (years), median (IQR) | 3 (2-4) | 3 (2-7) | 7 (2-9) | 4 (2-5) | .09 | ||
Home care (yes), n (%) | 2 (5) | 14 (39) | 6 (38) | 22 (23) | <.001 | ||
Cash allowances received by older people and/or family caregivers (yes), n (%) | 22 (52) | 4 (11) | 12 (75) | 38 (40) | <.001 | ||
Privately employed care assistant (yes), n (%) | 18 (43) | 11 (31) | 7 (44) | 36 (38) | .38 |
aResults of chi-square or Kruskal-Wallis tests for categorical and continuous variables, respectively. Sum of percentages may not be 100% because of rounding.
bIQR: interquartile range.
cADL: activities of daily living.
dIADL: instrumental activities of daily living.
Usage of the online information resources and interactive services by country.
Usage of resources and services | Italy |
Sweden |
Germany |
Total |
||||
Number of visits | 5 (2-8) | 13 (3-41) | 17 (7-66) | 7 (2-20) | <.001 | |||
Number of pages visited | 123 (75-186) | 267 (66-790) | 423 (121-926) | 157 (67-362) | .001 | |||
Time spent (minutes) | 102 (53-163) | 177 (65-755) | 432 (113-689) | 139 (57-405) | .002 | |||
Pages per visit | 25 (18-40) | 20 (13-34) | 21 (11-25) | 22 (14-35) | .07 | |||
Time per visit (minutes) | 24 (16-30) | 19 (10-27) | 19 (10-25) | 21 (14-29) | .048 | |||
.001 | ||||||||
Never | 20 (57) | 2 (8) | 4 (33) | 26 (35) | ||||
Low use | 8 (23) | 8 (31) | 2 (17) | 18 (25) | ||||
Medium-high use | 7 (20) | 16 (61) | 6 (50) | 29 (40) | ||||
.007 | ||||||||
Never | 16 (46) | 4 (15) | 6 (50) | 26 (36) | ||||
Low use | 12 (34) | 8 (31) | 0 (0) | 20 (27) | ||||
Medium-high use | 7 (20) | 14 (54) | 6 (50) | 27 (37) | ||||
.006 | ||||||||
Never | 28 (80) | 11 (42) | 5 (42) | 44 (60) | ||||
Low use | 6 (17) | 7 (27) | 5 (42) | 18 (25) | ||||
Medium-high use | 1 (3) | 8 (31) | 2 (16) | 11 (15) | ||||
.02 | ||||||||
Never | 26 (74) | 10 (38) | 7 (58) | 43 (59) | ||||
Low use | 8 (23) | 8 (31) | 3 (25) | 19 (26) | ||||
Medium-high use | 1 (3) | 8 (31) | 2 (17) | 11 (15) | ||||
<.001 | ||||||||
Never | 34 (97) | 18 (69) | 5 (42) | 57 (78) | ||||
Low use | 1 (3) | 4 (15) | 2 (16) | 7 (10) | ||||
Medium-high use | 0 (0) | 4 (15) | 5 (42) | 9 (12) | ||||
E-learning course (Italy) (yes) | 25 (60) | N/Ac | N/A | N/A | ||||
Writing task in forum (Sweden) (yes) | N/A | 8 (22) | N/A | N/A | ||||
Videoconferencing sessions (Germany) (yes) | N/A | N/A | 6 (38) | N/A |
aResults of chi-square or Kruskal-Wallis tests for categorical and continuous variables, respectively. Sum of percentages may not be to 100% because of rounding.
bIQR: interquartile range.
cN/A: not applicable.
Impact of the Web-based intervention on users.
Outcomes | Baseline measurement (T0) | Postintervention measurement (T1) | Effect size, |
||||
Mean (SD) | Median (IQRa) | Mean (SD) | Median (IQR) | ||||
WHO-5d | 44.5 (24.2) | 40 (24-60) | 43.4 (23.0) | 40 (24-60) | .41 | -.06 | |
Negative impact | 20.9 (4.1) | 21 (19-24) | 20.4 (4.2) | 21 (18-23) | .22 | -.09 | |
Positive value | 12.6 (2.2) | 13 (11-14) | 12.1 (2.1) | 12 (11-14) | .02 | -.18 | |
Quality of support | 10.4 (2.8) | 10 (8-12) | 9.8 (2.7) | 9 (8-12) | .02 | -.18 | |
Family | 21.0 (5.8) | 22 (17-26) | 20.1 (5.9) | 20 (16-25) | .04 | -.15 | |
Friends | 17.8 (6.1) | 18 (13-23) | 17.5 (6.1) | 18 (13-22) | .71 | -.03 | |
Social support | 21.9 (5.8) | 23 (18-27) | 21.1 (5.5) | 21 (17-26) | .04 | -.16 | |
Total score | 60.7 (14.2) | 63 (50-73) | 58.7 (14.2) | 60 (47-69) | .11 | -.12 |
aIQR: interquartile range.
bWilcoxon signed-rank test for dependent samples, calculated between median values before and after the intervention.
cEffect size,
dWHO-5: 5-item World Health Organization Well-being Index.
eCOPE: Carers of Older People in Europe.
fMSPSS: Multidimensional Scale of Perceived Social Support.
Primary and secondary outcomes were assessed before (T0) and after (T1) the 3-month Web-based intervention (see
Concerning the pretest-posttest scores, the analysis showed that participants changed their perception toward different aspects. There was a statistically significant decrease of values concerning the positive value of caregiving (-1;
A total number of 20 caregivers attended the focus groups: 7 in Italy, 7 in Germany, and 6 in Sweden. All participants in the three countries generally had a positive and satisfying experience with the platform, although there were slight differences in the emphasis of certain aspects. Data analysis identified five main themes: online social support, role awareness, caregiving activities, psychological well-being, and technical concerns. Theme analysis and relevant quotes are provided below (users’ names are fictional).
A consensus across the three focus groups was reported about the positive effects on social inclusion and support derived from using the interactive services. The platform was perceived as a safe virtual environment, which addressed caregivers’ needs to communicate with others and share personal experiences, more than any other available, mainstream, open-access social network (ie, Facebook). The possibility to interact in a protected environment with other people experiencing similar issues—although users did not know each other at first—led to increased mutual learning and understanding, as well as the recognition of not being alone in this condition. Both group and individual support provided by professional counselors was considered optimal and brought clear benefits. In particular, Swedish caregivers openly described that social recognition and confirmation by peers was useful for raising their own self-esteem, mastery over life, and sense of competence.
On other platforms, when I write something about my situation I have to explain. On this platform I don’t need to explain why I feel like I do, the other caregivers understand and know we have difficult times now and then.
Even just knowing that these kinds of support services exist and trustworthy people are working behind them, it is really important and helpful for family caregivers.
Caregivers expressed that they felt a change in their understanding of their caregiving situation, claiming especially of having been stimulated to reflect about and understand more their own condition and needs. In Italy and Germany, participants agreed that reading and sharing caregivers’ experiences was emotionally difficult, but helpful in order to understand and better appraise their roles. Furthermore, many caregivers expressed that they had a better understanding about the future development of the older person’s condition, and what they could expect to face in the months or years to come. In Sweden, older female spouses emphasized the valorization of their role as a direct effect of online interactions, one of them even reporting that she could now see her activity more as a proper “job” and better accept this role.
You got the impression that you are understood, able to talk openly and got to reflect on your own situation. This motivates you to take on new steps to improve your personal situation.
I have felt that my experiences are worth something, that I am not only an old lady in her 70s who should just sit and be quiet.
Most caregivers in Italy and Germany underlined that information available on the platform, as well as tips and advice from other users, were useful to improve caregiving activities and better approach the cared-for person. Talking retrospectively, many users said their lives could have changed if they had had access to the platform earlier, because it could have helped them to recognize certain symptoms and help provide the older person with more adequate care.
My caregiving situation has improved by the tips I got from the other caregivers.
If this Web platform existed when our mum looked upset without any clear reasons, we would have realized more easily what she needed and would have avoided her having to suffer so much.
In terms of subjective well-being, some users in Sweden (both children and spouses) said they felt less burdened after the intervention, especially because they could better accept both positive and negative feelings arising from the caregiving situation. The possibility to express and share them with others, without being judged but rather receiving social recognition and confirmation of their own efforts by peers, helped them to cope with the situation and to reduce their perceived stress.
I feel happier and calmer when I can share the positive and negative things that happen in my situation as a caregiver. I don't know if I would have coped with the situation [without the platform] actually.
I feel less stressed and that can be a result of other people’s posts that I allow myself to have negative feelings and thoughts.
Despite the majority of participants who judged the usability of the platform as sufficient or good, some of them did mention technical or usability issues as a reason for not having used some of the available interactive services more. In particular, Swedish users reported problems with using the mobile version and specific features of some services (eg, uploading pictures on the social network, and using the chat and videochat features), whereas in Italy some caregivers found it difficult to find and reach some internal pages or services. In Sweden, an alternative videocommunication system was used with the moderator in order to overcome technical issues arising with the videochat feature. Support guaranteed by the moderator was in any case highly appreciated by all users across the three countries.
Results from our pilot study showed a statistically significant change of the perception by caregivers of some aspects related to the caregiving context. At the end of the intervention, caregivers reported slightly lower levels of positive feelings and social support received, whereas subjective burden and psychological well-being did not change. On the other hand, qualitative findings from the focus groups pointed out the usefulness and appropriateness of support received by caregivers from information and communication with moderators and peers. The major benefit for users seemed to be their empowerment, by means of increased self-efficacy, role awareness, and social recognition.
An interpretation of these ambivalent results can be that the intervention actually stimulated a new appraisal of the caregiving situation, including coping resources and social support available in the community, with caregivers recognizing ultimately a lack of adequate (external and/or professional) support from family, significant others, and formal services. The online information and support received via the platform could have produced a reappraisal of their own situation, thus allowing participants to identify more clearly and/or for the first time multiple issues of caregiving previously unrecognized, and to understand hidden needs for support.
Our results seem to be in line with previous international research in this field. Studies delivering multicomponent programs comparable to our intervention, that included unstructured support by professionals and peers, did not show significant changes in psychological well-being and burden [
Furthermore, there is a lack of empirical literature regarding the effect of Web-based programs on perceived positive aspects of caregiving [
Available literature also suggests that guidance from a professional counselor or coach is an effective way to address specific needs of caregivers [
Despite the lack of evidence in terms of burden and psychological well-being, the piloted intervention seemed able to provide useful and adequate online support services for family caregivers of older people, even in a short-term time frame, which might lead to increased efforts to alleviate stress by accessing coping resources and social support in the community [
This study has some limitations to be taken into account and results cannot be generalized without caution. First, the study was conceived as a pilot test of a new Web-based program, able to carry out only a short-term and limited assessment of the intervention. Second, although the adopted mixed-methods approach gave the opportunity to integrate quantitative and qualitative results, associations between variables and causal relations could only be inferred. Third, despite the fact that the study was designed to include the main variables of interest, due to project constraints we could not include a control arm and cannot therefore exclude the influence of external variables on the outcomes. Fourth, only a subgroup of caregivers could be enrolled in the focus groups; indeed, we cannot fully exclude the influence of a selection bias in the qualitative findings. In general, the recruitment process was based on a convenience sample approach and bias in the profiles of the recruited caregivers was possible. Difficulties in approaching family caregivers [
Despite these limitations, it should be underlined that only a few studies have been able to involve similar or higher numbers of family caregivers in Web-based intervention research [
activities of daily living
Carers of Older People in Europe
European Union
Seventh Framework Programme
health status 1 variable
instrumental activities of daily living
Italian National Institute of Health and Science on Ageing
interquartile range
Multidimensional Scale of Perceived Social Support
not applicable
National Institute for the Study of Ageing and Later Life
Swedish Family Care Competence Centre
Older Americans’ Resources and Services
short message service
baseline measurement point
postintervention measurement point
5-item World Health Organization Well-being Index
The research leading to these results has received funding from the European Union’s Seventh Framework Programme for Research and Technological Development (FP7/2007-2013) under grant agreement No. 306058 (HEALTH-F3-2012-306058). Additional funding for publication was granted by the FP7 postgrant Open Access Pilot under the OpenAIRE2020 project (H2020-EINFRA-2014-1, 643410).
The authors would like to thank the family caregivers involved in the study; the experts who were involved in the consultation process, especially Elsa Marziali (University of Toronto) and Madeleine Starr (Carers UK) for their valuable feedback and support; Matteo Annibali (INRCA), Aidan Paul MacNally, and Alessio Ritucci (Eurocarers) for their contribution to the development and implementation of the InformCare Web platform in 27 European countries; Frank Goodwin, Stecy Yghemonos, and Francesca Centola (Eurocarers) for their support during the development and implementation phases; Cinzia Giuli and Silvia Valenza (INRCA), and Paul Svensson (NKA) for their contribution to field research; and the Italian nonprofit organization Anziani e Non Solo, which offered one of its e-learning courses to be tested during our intervention.
None declared.