A novel exploration of the support needs of people initiating insulin pump therapy using a social network approach: a longitudinal mixed‐methods study

et al. 2021

Preprint

BACKGROUND Individuals' social network and social support are fundamental determinants of self-management and self-efficacy. OBJECTIVE To identify how online and offline social networks play a role in health management for patients with chronic respiratory conditions. To explore the role of support from online peers in patients’ self-management, and understand the barriers and potential benefits to digital social interventions. METHODS We recruited participants from a hospital-run singing group to a workshop in London, UK, and adapted PERSNET, a quantitative social network assessment tool on a secure open-source web platform (REDCap), to generate social maps of online and offline individuals involved in managing participants’ chronic respiratory conditions. The second workshop was replaced by telephone interviews due to COVID-19 lockdown. We analyzed the transcripts using thematic analysis. RESULTS Seven participants (2M, 5F), with an age range of 64 to 81, produced network maps that comprised between 5 and 10 individuals, including family members, healthcare professionals, colleagues, activity groups, offline and online friends, and peers. Participants with small, close-knit networks received physical, health, and emotional support, whereas those with more diverse and large networks benefited from accessing alternative/complementary sources of information. Participants in the latter type of network tended to communicate more openly about their illness, shared the impact their illness had on their day-to-day life, and demonstrated distinct traits in terms of identity and perception of chronic disease. During the COVID-19 lockdown, additional themes emerged, including the need to develop the ability to switch from offline to online communication. Participants described potential benefits of expanding their network to include online peers, as source of novel information, motivation, and access to supportive environments. Lack of technological skills, fear of being scammed, or preference for keeping illness-related problems for themselves/immediate family were reported as barriers to engage with online peer support. CONCLUSIONS The social network assessment tool proved feasible and acceptable. The visual maps facilitated reflections and enhanced participants’ understanding of the role of offline and online social networks in the management of chronic respiratory conditions. It also highlighted the work undertaken by the networks themselves in the self-management support of people with asthma or COPD. These data show the value of using a social network tool as an intervention that can support self-management, and as a research tool that can help assess and understand network structure and engagement in the self-management support of people with chronic respiratory conditions. Patients’ preferences to share illness experiences with online peers, and the contexts in which this can be acceptable, should be considered when developing and offering digital social interventions. Future studies can explore the evolution of the social networks of people with chronic illnesses to understand whether willingness to engage with online peers can change over time. CLINICALTRIAL n/a

Section: Clinical and Research Implicationsmentioning

confidence: 90%

Understanding Online and Offline Social Networks in Illness Management of Older Patients With Asthma and Chronic Obstructive Pulmonary Disease: Mixed Methods Study Using Quantitative Social Network Assessment and Qualitative Analysis (Preprint)

Andreou¹,

Dhand²,

et al. 2021

Preprint

“…This process of visualization and reflection has been referred to previously as a positive disruption [ 53 ]. Previous work has shown how network visualization and reflection lead to improved network engagement and can improve outcomes [ 54 - 56 ]. Future studies should investigate whether encouraging people with LTCs who are willing to engage in OHCs to expand their social networks to include online peers could enhance their access to novel information and potentially improve their self-management.…”

Section: Discussionmentioning

confidence: 99%

Understanding Online and Offline Social Networks in Illness Management of Older Patients With Asthma and Chronic Obstructive Pulmonary Disease: Mixed Methods Study Using Quantitative Social Network Assessment and Qualitative Analysis

Andreou¹,

Dhand²,

et al. 2022

JMIR Form Res

Background Individuals’ social networks and social support are fundamental determinants of self-management and self-efficacy. In chronic respiratory conditions, social support can be promoted and optimized to facilitate the self-management of breathlessness. Objective This study aimed to identify how online and offline social networks play a role in the health management of older patients with chronic respiratory conditions, explore the role of support from online peers in patients’ self-management, and understand the barriers to and potential benefits of digital social interventions. Methods We recruited participants from a hospital-run singing group to a workshop in London, the United Kingdom, and adapted PERSNET, a quantitative social network assessment tool. The second workshop was replaced by telephone interviews because of the COVID-19 lockdown. The transcripts were analyzed using thematic analysis. Results A total of 7 participants (2/7, 29%, men and 5/7, 71%, women), with an age range of 64 to 81 years, produced network maps that comprised between 5 and 10 individuals, including family members, health care professionals, colleagues, activity groups, offline and online friends, and peers. The visual maps facilitated reflections and enhanced participants’ understanding of the role of offline and online social networks in the management of chronic respiratory conditions. It also highlighted the work undertaken by the networks themselves in the self-management support. Participants with small, close-knit networks received physical, health, and emotional support, whereas those with more diverse and large networks benefited from accessing alternative and complementary sources of information. Participants in the latter type of network tended to communicate more openly and comfortably about their illness, shared the impact of their illness on their day-to-day life, and demonstrated distinct traits in terms of identity and perception of chronic disease. Participants described the potential benefits of expanding their networks to include online peers as sources of novel information, motivation, and access to supportive environments. Lack of technological skills, fear of being scammed, or preference for keeping illness-related problems for themselves and immediate family were reported by some as barriers to engaging with online peer support. Conclusions In this small-scale study, the social network assessment tool proved feasible and acceptable. These data show the value of using a social network tool as a research tool that can help assess and understand network structure and engagement in the self-management support and could be developed into an intervention to support self-management. Patients’ preferences to share illness experiences with their online peers, as well as the contexts in which this can be acceptable, should be considered when developing and offering digital social interventions. Future studies can explore the evolution of the social networks of older people with chronic illnesses to understand whether their willingness to engage with online peers can change over time.

“…Research has shown that social support can influence chronic disease self-management [ 45 , 46 ]. In a GENIE study involving older adults with diabetes, facilitators used GENIE as “a positive disruption to self-management by prompting reconsideration of network members and how they impact on self-management as well as an avenue to connect to new activities and sources of support” [ 47 ]. Given the partial understanding of the purpose of GENIE, this study highlights the need to improve GENIE training to ensure that users have a clear understanding of its purpose and how the components are meant to work together.…”

Section: Discussionmentioning

confidence: 99%

A Web-Based Social Network Tool (GENIE) for Supporting Self-management Among High Users of the Health Care System: Feasibility and Usability Study

Valaitis¹,

Cleghorn²,

et al. 2021

JMIR Form Res

Self Cite

Background Primary care providers are well positioned to foster self-management through linking patients to community-based health and social services (HSSs). This study evaluated a web-based tool—GENIE (Generating Engagement in Network Involvement)—to support the self-management of adults. GENIE empowers patients to leverage their personal social networks and increase their access to HSSs. GENIE maps patients’ personal social networks, elicits preferences, and filters local HSSs from a community service directory based on patient’s interests. Trained volunteers (an extension of the primary care team) conducted home visits and conducted surveys related to life and health goals in the context of the Health TAPESTRY (Teams Advancing Patient Experience: Strengthening Quality) program, in which the GENIE tool was implemented. GENIE reports were uploaded to an electronic medical record for care planning by the team. Objective This study aims to explore patients’, volunteers’, and clinicians’ perceptions of the feasibility, usability, and perceived outcomes of GENIE—a tool for community-dwelling adults who are high users of the health care system. Methods This study involved 2 primary care clinician focus groups and 1 clinician interview (n=15), 1 volunteer focus group (n=3), patient telephone interviews (n=8), field observations that captured goal-action sequences to complete GENIE, and GENIE utilization statistics. The patients were enrolled in a primary care program—Health TAPESTRY—and Ontario’s Health Links Program, which coordinates care for the highest users of the health care system. NVivo 11 (QSR International) was used to support qualitative data analyses related to feasibility and perceived outcomes, and descriptive statistics were used for quantitative data. Results Most participants reported positive overall perceptions of GENIE. However, feasibility testing showed that participants had a partial understanding of the tool; volunteer facilitation was critical to support the implementation of GENIE; clinicians perceived their navigation ability as superior to that of GENIE supported by volunteers; and tool completion took 39 minutes, which made the home visit too long for some. Usability challenges included difficulties completing some sections of the tool related to medical terminology and unclear instructions, limitations in the quality and quantity of HSSs results, and minor technological challenges. Almost all patients identified a community program or activity of interest. Half of the patients (4/8, 50%) followed up on HSSs and added new members to their network, whereas 1 participant lost a member. Clinicians’ strengthened their understanding of patients’ personal social networks and needs, and patients felt less social isolation. Conclusions This study demonstrated the potential of GENIE, when supported by volunteers, to expand patients’ social networks and link them to relevant HSSs. Volunteers require training to implement GENIE for self-management support, which may help overcome the time limitations faced by primary care clinicians. Refining the filtering capability of GENIE to address adults’ needs may improve primary care providers’ confidence in using such tools.