Accessing support and empowerment online: The experiences of individuals with diabetes

Brady, Ellen; Segar, Julia; Sanders, Caroline

doi:10.1111/hex.12552

Cited by 43 publications

(79 citation statements)

References 59 publications

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“…Online patient research networks may be able to fill this gap by facilitating connections with patients, rapidly and without geographic bounds, in a space where they are already engaged and activated with others who share their health condition. 26 , 27 …”

Section: Introductionmentioning

confidence: 99%

Patient engagement in type 2 diabetes mellitus research: what patients want

Simacek¹,

Nelson²,

Miller-Baldi³

et al. 2018

PPA

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BackgroundAs patients are the ultimate stakeholder in their health, their perspectives should be included along with researchers, providers, and funders of research design, execution, and interpretation. Despite the high prevalence of type 2 diabetes mellitus (T2DM), patients are rarely directly included in these decisions.PurposeWe sought to determine areas of research most important to patients with T2DM, identify ways through which patients with T2DM want to engage in research, and evaluate online patient research networks as a source for obtaining patient perspectives on research engagement.Patients and methodsThis study used an online patient community forum (PatientsLikeMe) to host two asynchronous moderated discussions, each with three to four prompted discussion posts. A qualitative summary of themes was derived from the posts.ResultsEighty-eight participants with T2DM took part. Participants were mostly white (86%), averaged 58.6 years of age, half were female (50%), and over half (62%) resided in the US. Research priorities included managing T2DM with comorbidities, controlling blood sugar levels, finding a cure, and understanding causes of T2DM. Participants wanted to see direct applications of research to their lives. Clinical research was perceived to have overly restrictive eligibility criteria and to measure outcome sets that do not adequately address patient health concerns. Participants indicated broad interest in partnering in research and a willingness to apply their skills and educational background to specific stages in the research process.ConclusionPatients with T2DM would like researchers to address outcomes that have meaning in patients’ daily lives. Initiatives to involve patients in research should leverage and enable patients to contribute as participants, advisors, or co-investigators, going beyond research topic prioritization to full participation throughout the research process based on their abilities and interest. This study provides support for the use of online patient research network discussions to generate rich qualitative data to engage patients in research.

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Section: Introductionmentioning

confidence: 99%

Patient engagement in type 2 diabetes mellitus research: what patients want

Simacek¹,

Nelson²,

Miller-Baldi³

et al. 2018

PPA

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show abstract

“…Research has alluded to the empowering processes of online communities (Brady et al 2017) and earlier work in this area has pointed towards the increased access to health information that the internet affords, as being likely to bring about such changes in the role and place of formal care in LTC management (Hardy 1999). Patient choice is no longer based solely on the options presented by formal care; with an increasing role being seen for online ties in this context.…”

Section: Discussionmentioning

confidence: 99%

The work and relatedness of ties mediated online in supporting long‐term condition self‐management

Allen

Vassilev

Kennedy

et al. 2019

Sociology Health & Illness

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The ‘care transition’ is characterised by reduced state involvement in chronic illness management in response to socio‐political movements aimed at meeting the challenges presented by an increased prevalence of chronic illness. Amongst these changes has been online communities’ rising importance in everyday interactions and attention is being increasingly paid towards the ways online contacts might contribute to self‐management. Whilst research has illuminated the relevance of personal networks in long‐term condition management, it is relevant to extend this work to consider the place of ties mediated online in this bricolage of support, including better understanding the work drawn from them and the strategies involved in eliciting it. This study examined the work and relatedness of 30 participants, who used online communities. Participants were asked about the role of on and offline ties and ego network mapping was used to frame conversations about the nature of this support. The context of engagement followed three main themes. Participants drew from online communities in response to deficits in offline support, they used online ties to leverage support or action from offline ties and they used online ties to substitute offline support, with less intimate online ties.

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“…First, previous studies have shown that older adults will use online communities to obtain health information related to chronic conditions [6 14]. In order to understand diabetes patients' use of online resources to seek health information, prior studies have frequently employed interviews [46][47][48] and surveys [49 50]. Even in situations where they used content analysis, researchers performed only traditional quantitative content analysis [12].…”

Section: Discussionmentioning

confidence: 99%

Understanding Why Older Adults With Type 2 Diabetes Join Diabetes Online Communities: Semantic Network Analyses (Preprint)

Lewis¹,

Gee²,

Ho³

et al. 2018

Preprint

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Objective: As individuals age, chronic health difficulties may disrupt physical and social well-being. Individuals can turn to online communities to interact with similar peers, which may help buffer negative effects resulting from health difficulties. However, because the specific resources sought remain unclear, the present study investigated the reasons that older adults join a Diabetes Online Community (DOC). Method: We used semantic network analyses to categorize the reasons participants provided for joining during the sign-up process. Results: The most frequent reasons for joining were: to seek information about their health condition, to help with self-management of health difficulties, for feelings of informational and social support, and for having a community with whom to share. Women were more likely to go online for sharing/companionship and information/social support reasons, whereas men were more likely to go online for general information and self-management reasons. Conclusion: This study shows the reasons individuals seek to join a DOC, for increased information and support regarding chronic health difficulties. Practice Implications: Practitioners may want to consider ways to promote access to online communities among their older patients as a source of health information and a resource to provide a sense of community.

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Accessing support and empowerment online: The experiences of individuals with diabetes

Cited by 43 publications

References 59 publications

Patient engagement in type 2 diabetes mellitus research: what patients want

Patient engagement in type 2 diabetes mellitus research: what patients want

The work and relatedness of ties mediated online in supporting long‐term condition self‐management

Understanding Why Older Adults With Type 2 Diabetes Join Diabetes Online Communities: Semantic Network Analyses (Preprint)

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