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Can social support work virtually? Evaluation of rheumatoid arthritis patients' experiences with an interactive online tool.

Kostova Z, Caiata-Zufferey M, Schulz PJ - Pain Res Manag (2015 Jul-Aug)

Bottom Line: The general purpose was to identify where the support provided did - or did not - help patients, and to judge whether the determinants of success lay more within patients - their engagement and willingness to participate - or within the design of the website itself.A more specific purpose was to elaborate qualitatively on results from a quantitative survey of users, which indicated that any positive impact was confined to practical matters of pain management rather than extending to more fundamental psychological outcomes such as acceptance.Overall, online learning and interaction can do much to help patients with the everyday stresses of their disease; however, its potential for more durable positive impact depends on various individual characteristics such as personality traits, existing social networks, and the severity and longevity of the disease.

View Article: PubMed Central - PubMed

ABSTRACT

Background: There is strong empirical evidence that the support that chronic patients receive from their environment is fundamental for the way they cope with physical and psychological suffering. Nevertheless, in the case of rheumatoid arthritis (RA), providing the appropriate social support is still a challenge, and such support has often proven to be elusive and unreliable in helping patients to manage the disease.

Objectives: To explore whether and how social support for RA patients can be provided online, and to assess the conditions under which such support is effective. An online support tool was designed to provide patients with both tailored information and opportunities to interact online with health professionals and fellow sufferers. The general purpose was to identify where the support provided did - or did not - help patients, and to judge whether the determinants of success lay more within patients - their engagement and willingness to participate - or within the design of the website itself.

Methods: The present study reports qualitative interviews with 19 users of the tool. A more specific purpose was to elaborate qualitatively on results from a quantitative survey of users, which indicated that any positive impact was confined to practical matters of pain management rather than extending to more fundamental psychological outcomes such as acceptance.

Results and conclusions: Overall, online learning and interaction can do much to help patients with the everyday stresses of their disease; however, its potential for more durable positive impact depends on various individual characteristics such as personality traits, existing social networks, and the severity and longevity of the disease.

No MeSH data available.


Related in: MedlinePlus

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Mentions: The informational part of the site (Figure 1) was divided into sections according to the key problems identified in the previous interviews. For example, it became clear that late diagnosis – often following a period of scepticism and distrust of general practitioners – was common and had many negative physical and psychological effects. Therefore, a section referred to as ‘the Library’ was created in which information was provided emphasizing the importance of early diagnosis and the recognition of the first symptoms, as well as other educational material about the nature, etiology and evolution of the disease. Another example of providing tailored support concerned common postdiagnosis reactions such as denial, self-isolation, anger and depression. These were examined in the section on living with arthritis, which not only informed patients about the negative consequences of these reactions but also gave advice about more appropriate strategies for confronting and accepting RA. Addressing one key aspect of the social support deficit, a section entitled ‘Family’ was created, with suggestions about what patients need in terms of support and how to avoid conflict dynamics. These sections were not confined to text information; there were also videos presenting advice on, for example, occupational therapy and physical exercise. The aim of all of this informational support was to boost patients’ health literacy and, in turn, their constructive self-management behaviour.


Can social support work virtually? Evaluation of rheumatoid arthritis patients' experiences with an interactive online tool.

Kostova Z, Caiata-Zufferey M, Schulz PJ - Pain Res Manag (2015 Jul-Aug)

Informational section
© Copyright Policy
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC4532206&req=5

f1-prm-20-199: Informational section
Mentions: The informational part of the site (Figure 1) was divided into sections according to the key problems identified in the previous interviews. For example, it became clear that late diagnosis – often following a period of scepticism and distrust of general practitioners – was common and had many negative physical and psychological effects. Therefore, a section referred to as ‘the Library’ was created in which information was provided emphasizing the importance of early diagnosis and the recognition of the first symptoms, as well as other educational material about the nature, etiology and evolution of the disease. Another example of providing tailored support concerned common postdiagnosis reactions such as denial, self-isolation, anger and depression. These were examined in the section on living with arthritis, which not only informed patients about the negative consequences of these reactions but also gave advice about more appropriate strategies for confronting and accepting RA. Addressing one key aspect of the social support deficit, a section entitled ‘Family’ was created, with suggestions about what patients need in terms of support and how to avoid conflict dynamics. These sections were not confined to text information; there were also videos presenting advice on, for example, occupational therapy and physical exercise. The aim of all of this informational support was to boost patients’ health literacy and, in turn, their constructive self-management behaviour.

Bottom Line: The general purpose was to identify where the support provided did - or did not - help patients, and to judge whether the determinants of success lay more within patients - their engagement and willingness to participate - or within the design of the website itself.A more specific purpose was to elaborate qualitatively on results from a quantitative survey of users, which indicated that any positive impact was confined to practical matters of pain management rather than extending to more fundamental psychological outcomes such as acceptance.Overall, online learning and interaction can do much to help patients with the everyday stresses of their disease; however, its potential for more durable positive impact depends on various individual characteristics such as personality traits, existing social networks, and the severity and longevity of the disease.

View Article: PubMed Central - PubMed

ABSTRACT

Background: There is strong empirical evidence that the support that chronic patients receive from their environment is fundamental for the way they cope with physical and psychological suffering. Nevertheless, in the case of rheumatoid arthritis (RA), providing the appropriate social support is still a challenge, and such support has often proven to be elusive and unreliable in helping patients to manage the disease.

Objectives: To explore whether and how social support for RA patients can be provided online, and to assess the conditions under which such support is effective. An online support tool was designed to provide patients with both tailored information and opportunities to interact online with health professionals and fellow sufferers. The general purpose was to identify where the support provided did - or did not - help patients, and to judge whether the determinants of success lay more within patients - their engagement and willingness to participate - or within the design of the website itself.

Methods: The present study reports qualitative interviews with 19 users of the tool. A more specific purpose was to elaborate qualitatively on results from a quantitative survey of users, which indicated that any positive impact was confined to practical matters of pain management rather than extending to more fundamental psychological outcomes such as acceptance.

Results and conclusions: Overall, online learning and interaction can do much to help patients with the everyday stresses of their disease; however, its potential for more durable positive impact depends on various individual characteristics such as personality traits, existing social networks, and the severity and longevity of the disease.

No MeSH data available.


Related in: MedlinePlus