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      A Web-Based Psychosocial Intervention for Family Caregivers of Older People: Results from a Mixed-Methods Study in Three European Countries

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          Abstract

          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).

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          Most cited references50

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          <p>Most writing on sociological method has been concerned with how accurate facts can be obtained and how theory can thereby be more rigorously tested. In The Discovery of Grounded Theory, Barney Glaser and Anselm Strauss address the equally Important enterprise of how the discovery of theory from data--systematically obtained and analyzed in social research--can be furthered. The discovery of theory from data--grounded theory--is a major task confronting sociology, for such a theory fits empirical situations, and is understandable to sociologists and laymen alike. Most important, it provides relevant predictions, explanations, interpretations, and applications.</p><p>In Part I of the book, Generation Theory by Comparative Analysis, the authors present a strategy whereby sociologists can facilitate the discovery of grounded theory, both substantive and formal. This strategy involves the systematic choice and study of several comparison groups. In Part II, The Flexible Use of Data, the generation of theory from qualitative, especially documentary, and quantitative data Is considered. In Part III, Implications of Grounded Theory, Glaser and Strauss examine the credibility of grounded theory.</p><p>The Discovery of Grounded Theory is directed toward improving social scientists' capacity for generating theory that will be relevant to their research. While aimed primarily at sociologists, it will be useful to anyone Interested In studying social phenomena--political, educational, economic, industrial-- especially If their studies are based on qualitative data.</p></p>
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            <p><b>The reissue of a classic work, now with a foreword by Daniel Goleman!</b><p>Here is a monumental work that continues in the tradition pioneered by co-author Richard Lazarus in his classic book <i>Psychological Stress and the Coping Process</i>. Dr. Lazarus and his collaborator, Dr. Susan Folkman, present here a detailed theory of psychological stress, building on the concepts of cognitive appraisal and coping which have become major themes of theory and investigation.</p> <p>As an integrative theoretical analysis, this volume pulls together two decades of research and thought on issues in behavioral medicine, emotion, stress management, treatment, and life span development. A selective review of the most pertinent literature is included in each chapter. The total reference listing for the book extends to 60 pages.</p> <p>This work is necessarily multidisciplinary, reflecting the many dimensions of stress-related problems and their situation within a complex social context. While the emphasis is on psychological aspects of stress, the book is oriented towards professionals in various disciplines, as well as advanced students and educated laypersons. The intended audience ranges from psychiatrists, clinical psychologists, nurses, and social workers to sociologists, anthropologists, medical researchers, and physiologists.</p>
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                Author and article information

                Contributors
                Journal
                JMIR Res Protoc
                JMIR Res Protoc
                ResProt
                JMIR Research Protocols
                JMIR Publications (Toronto, Canada )
                1929-0748
                Oct-Dec 2016
                06 October 2016
                : 5
                : 4
                : e196
                Affiliations
                [1] 1Centre for Socio-Economic Research on Ageing National Institute of Health and Science on Ageing (INRCA) AnconaItaly
                [2] 2Department of Health and Caring Sciences Linnaeus University KalmarSweden
                [3] 3National Institute for the Study of Ageing and Later Life Linköping University NorrköpingSweden
                [4] 4Swedish Family Care Competence Centre (NKA) KalmarSweden
                [5] 5wir pflegen e.V. BerlinGermany
                [6] 6Eurocarers BrusselsBelgium
                [7] 7Cyprus University of Technology LimassolCyprus
                [8] 8Neurology Unit National Institute of Health and Science on Ageing (INRCA) AnconaItaly
                Author notes
                Corresponding Author: Francesco Barbabella f.barbabella@ 123456inrca.it
                Author information
                http://orcid.org/0000-0002-1497-0011
                http://orcid.org/0000-0002-6554-1559
                http://orcid.org/0000-0001-6438-8575
                http://orcid.org/0000-0001-9765-7743
                http://orcid.org/0000-0003-3827-5918
                http://orcid.org/0000-0001-7609-4822
                http://orcid.org/0000-0001-8838-1669
                http://orcid.org/0000-0002-3473-4606
                http://orcid.org/0000-0002-7910-2020
                http://orcid.org/0000-0003-0586-2171
                http://orcid.org/0000-0001-9278-9544
                Article
                v5i4e196
                10.2196/resprot.5847
                5073207
                27713113
                2941ea58-3cdd-4ca6-91a7-6a1b66e3cce3
                ©Francesco Barbabella, Arianna Poli, Frida Andréasson, Benjamin Salzmann, Roberta Papa, Elizabeth Hanson, Areti Efthymiou, Hanneli Döhner, Cristina Lancioni, Patrizia Civerchia, Giovanni Lamura. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 06.10.2016.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org, as well as this copyright and license information must be included.

                History
                : 7 April 2016
                : 25 July 2016
                : 11 August 2016
                : 24 August 2016
                Categories
                Original Paper
                Original Paper

                caregivers,frail elderly,internet,social support,social networking,health education

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