148 Social Networks of Self-Management and Care Coordination Among Patients on Dialysis

Background Children with medical complexity (CMC) present rewarding but complex challenges for the health care system. Transforming high-quality care practices for this population requires multiple stakeholders and development of innovative models of care. Importantly, care coordination requires significant self-management by families in home- and community-based settings. Self-management often requires that families of CMC rely on vast and diverse social networks, encompassing both online and offline social relationships with individuals and groups. The result is a support network surrounding the family to help accomplish self-management of medical tasks and care coordination. Objective The goal of this study is to use a theoretically driven perspective to systematically elucidate the range of self-management experiences across families of CMC embedded in diverse social networks and contextual environments. This approach will allow for characterization of the structure and process of self-management of CMC with respect to social networks, both in person and digitally. This research proposal aims to address the significant gaps in the self-management literature surrounding CMC, including the following: (1) how self-management responsibilities are distributed and negotiated among the social network and (2) how individual-, family-, and system-level factors influence self-management approaches for CMC from a theoretically driven perspective. Methods This study will encompass a qualitative descriptive approach to understand self-management practices among CMC and their social networks. Data collection and analysis will be guided by a theoretical and methodological framework, which synthesizes perspectives from nursing, human factors engineering, public health, and family counseling. Data collection will consist of semistructured interviews with children, parents, and social network members, inclusive of individuals such as friends, neighbors, and community members, as well as online communities and individuals. Data analysis will consist of a combination of inductive and deductive methods of qualitative content analysis, which will be analyzed at both individual and multiadic levels, where interview data from two or more individuals, focused on the same experience, will be comparatively analyzed. Results This study will take approximately 18 months to complete. Our long-term goals are to translate the qualitative analysis into (1) health IT design guidance for innovative approaches to self-management and (2) direct policy guidance for families of CMC enrolled in Medicaid and private insurance. Conclusions Multiple innovative components of this study will enable us to gain a comprehensive and nuanced understanding of the lived experience of self-management of CMC. In particular, by synthesizing and applying theoretical and methodological approaches from multiple disciplines, we plan to create novel informatics and policy solutions to support their care within home and community settings. International Registered Report Identifier (IRRID) PRR1-10.2196/14810

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Self-Management Characterization for Families of Children With Medical Complexity and Their Social Networks: Protocol for a Qualitative Assessment (Preprint)

10.2196/preprints.14810 ◽

2019 ◽

Author(s):

Rupa S Valdez ◽

Christopher Lunsford ◽

Jiwoon Bae ◽

Lisa C Letzkus ◽

Jessica Keim-Malpass

Keyword(s):

Social Networks ◽

Social Network ◽

Data Collection ◽

Care Coordination ◽

Support Network ◽

System Level ◽

Qualitative Assessment ◽

Self Management ◽

Children With Medical Complexity ◽

Medical Complexity

BACKGROUND Children with medical complexity (CMC) present rewarding but complex challenges for the health care system. Transforming high-quality care practices for this population requires multiple stakeholders and development of innovative models of care. Importantly, care coordination requires significant self-management by families in home- and community-based settings. Self-management often requires that families of CMC rely on vast and diverse social networks, encompassing both online and offline social relationships with individuals and groups. The result is a support network surrounding the family to help accomplish self-management of medical tasks and care coordination. OBJECTIVE The goal of this study is to use a theoretically driven perspective to systematically elucidate the range of self-management experiences across families of CMC embedded in diverse social networks and contextual environments. This approach will allow for characterization of the structure and process of self-management of CMC with respect to social networks, both in person and digitally. This research proposal aims to address the significant gaps in the self-management literature surrounding CMC, including the following: (1) how self-management responsibilities are distributed and negotiated among the social network and (2) how individual-, family-, and system-level factors influence self-management approaches for CMC from a theoretically driven perspective. METHODS This study will encompass a qualitative descriptive approach to understand self-management practices among CMC and their social networks. Data collection and analysis will be guided by a theoretical and methodological framework, which synthesizes perspectives from nursing, human factors engineering, public health, and family counseling. Data collection will consist of semistructured interviews with children, parents, and social network members, inclusive of individuals such as friends, neighbors, and community members, as well as online communities and individuals. Data analysis will consist of a combination of inductive and deductive methods of qualitative content analysis, which will be analyzed at both individual and multiadic levels, where interview data from two or more individuals, focused on the same experience, will be comparatively analyzed. RESULTS This study will take approximately 18 months to complete. Our long-term goals are to translate the qualitative analysis into (1) health IT design guidance for innovative approaches to self-management and (2) direct policy guidance for families of CMC enrolled in Medicaid and private insurance. CONCLUSIONS Multiple innovative components of this study will enable us to gain a comprehensive and nuanced understanding of the lived experience of self-management of CMC. In particular, by synthesizing and applying theoretical and methodological approaches from multiple disciplines, we plan to create novel informatics and policy solutions to support their care within home and community settings. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/14810

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The ecosystem of a ‘wealth-tech’ culture: the birth of networked financial subjects in South Korea

Media Culture & Society ◽

10.1177/0163443719853497 ◽

2019 ◽

Vol 42 (2) ◽

pp. 207-224

Author(s):

Bohyeong Kim

Keyword(s):

Social Networks ◽

South Korea ◽

Social Networking ◽

Financial Information ◽

Self Management ◽

Public Place ◽

Third Place ◽

Simultaneous Production ◽

New Form

Starting with an online financial community in South Korea, this article explores the simultaneous production of a new form of subjectivity and a networked ecosystem of financial cultures. Using a multi-sited ethnography to track the movements of users as they moved across different spaces, this article finds that users gifted financial information to each other, blended laity and expertise, and reappropriated financial communities into a third place defined as an informal, public place hosting sociable conversations. Through the grafting of prosocial activities (e.g. sharing, gifting, and social networking) onto financial self-management, users were shaped as networked financial subjects and exhibited a distinctive mode of selfhood informed by both financial subjectivity and neoliberal networked subjectivity. At the same time, their practices spawned countless social, convivial groups as well as entrepreneurial financial gurus. By demonstrating the complex webs of on- and off-line groups, programs, relationships, and social networks, this article illustrates how the networked ecosystem of financial cultures brought the markets and commons into coalescence.

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The Three-Legged Stool: Synthesizing and Extending Our Understanding of the Career Advancement Facilitators of Persons With Disabilities in Leadership Positions

Business & Society ◽

10.1177/0007650320907134 ◽

2020 ◽

pp. 000765032090713

Author(s):

Daniel Samosh

Keyword(s):

Social Networks ◽

Role Models ◽

Career Advancement ◽

Management Strategies ◽

Self Management ◽

Leadership Positions ◽

Persons With Disabilities ◽

Societal Factors ◽

The Social

I examine the career advancement facilitators of organizational stakeholders who may be identified as simultaneously “core” and “fringe” in this article, via the insights of 21 leaders with disabilities. To navigate barriers and advance their careers, these leaders benefited from three categories of facilitators, including career self-management strategies, social networks, and organizational and societal factors. Facilitators are synthesized with a metaphor, the three-legged stool, which depicts three foundational pillars that underlie the leaders’ success. Focusing on an understudied element of the social networks pillar, I examine how leaders’ external networks (family, friends, acquaintances, and role models) facilitated their career advancement. Findings point to the role of strong and weak ties in developing leaders’ career self-management strategies as well as their access to core stakeholder positions. Last, contributions, implications, and limitations of this article are discussed.

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The influence of social networks on cancer survivors’ self-management support: A survey analysis

Annals of Oncology ◽

10.1093/annonc/mdy341.026 ◽

2018 ◽

Vol 29 ◽

pp. viii689 ◽

Cited By ~ 1

Author(s):

G.H. Howard-Jones ◽

A. Richardson ◽

I. Vassilev ◽

D. Fenlon ◽

S. Ewings

Keyword(s):

Social Networks ◽

Cancer Survivors ◽

Self Management ◽

Management Support ◽

Survey Analysis

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The influence of social networks on self-management support: a metasynthesis

BMC Public Health ◽

10.1186/1471-2458-14-719 ◽

2014 ◽

Vol 14 (1) ◽

Cited By ~ 91

Author(s):

Ivaylo Vassilev ◽

Anne Rogers ◽

Anne Kennedy ◽

Jan Koetsenruijter

Keyword(s):

Social Networks ◽

Self Management ◽

Management Support

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A Usability and Feasibility Study: GENIE - An App Supporting Self-Management among Older Adults who are High Users of the Health Care System (Preprint)

10.2196/preprints.25285 ◽

2020 ◽

Author(s):

Ruta Valaitis ◽

Laura Cleghorn ◽

Ivaylo Vassilev ◽

Anne Rogers ◽

Jenny Ploeg ◽

...

Keyword(s):

Older Adults ◽

Primary Care ◽

Health Care ◽

Social Networks ◽

Social Services ◽

Health Care System ◽

Self Management ◽

Health And Social Services ◽

Primary Care Clinicians ◽

Care System

BACKGROUND Primary care providers have been tasked with fostering self-management through managing referrals and linking patients to community-based health and social services. This study evaluated a web-based tool –GENIE (Generating Engagement in Network InvolvEment)– as a component of the Health TAPESTRY program to support self-management of older adults who are high health care system users. GENIE aims to empower patients to leverage their personal social networks to access community services towards reaching their health goals. GENIE maps client’s personal networks, elicits preferences, and filters local health and social resources from a community service directory based on results of a questionnaire that explores client’s interests. In the Health TAPESTRY program, volunteers conducted home visits to gather health information on tablets and implemented the GENIE tool. A report was generated for the primary care team for follow up. OBJECTIVE This study examined the usability, feasibility, and perceived outcomes of the implementation of GENIE with older adults who were enrolled in Ontario’s Health Links Program, which coordinates care for the highest users of the health care system. METHODS This study involved two primary care clinician focus groups, one clinician interview, a volunteer focus group, client telephone interviews, field observations, and GENIE utilization statistics. RESULTS Eight patients, three volunteers, and 16 primary care clinicians participated. Patients were most interested in services that were health-related (exercise and socialization). Overall, participants perceived GENIE to be useful and easy to use, despite challenges related to email set up, disease terminology, instructions for personal network mapping, and clarity of questionnaire items. Volunteer facilitation was critical to support implementation of Genie. Tool completion averaged 39 minutes. Almost all patients identified a community program or activity of interest using GENIE. Half followed up on health and social services and added new members to their network over 6 months, while one participant lost a member. Clinicians had concerns about accuracy, suitability, and quantity of suggested programs and services generated from the tool and believed that they could better tailor choices for their patients highlighting the inherent tension between user-centred preferences focused on capabilities and bio-medical definitions of need shaping professional judgement. However, clinicians did note that GENIE strengthened their understanding of patients’ personal social networks. CONCLUSIONS This study demonstrated GENIE’s potential, facilitated by volunteers, to expand patients’ social networks and link them to relevant health and social services to support self-management. Volunteers require training to effectively implement GENIE for self-management support and can help overcome time limitations that primary care clinicians face. Refining the filtering capability of GENIE to allow for better tailoring of results to address the complex needs of those who are high system users may help to improve primary care provider’s confidence in such tools. CLINICALTRIAL Not applicable

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Interventions for Improving Outcomes in Patients With Multimorbidity in Primary Care and Community Setting: A Systematic Review

10.21203/rs.3.rs-144669/v1 ◽

2021 ◽

Author(s):

Susan Smith ◽

Emma Wallace ◽

Barbara Clyne ◽

Fiona Boland ◽

Martin Fortin

Keyword(s):

Mental Health ◽

Primary Care ◽

Care Coordination ◽

Health Behaviours ◽

Self Management ◽

Management Support ◽

Medicines Management ◽

Experience Of Care ◽

Patient Health ◽

Improve Patient

Abstract BackgroundMultimorbidity, defined as the co-existence of two or more chronic conditions, presents significant challenges to patients, healthcare providers and health systems. Despite this, there is ongoing uncertainty about the most effective ways to manage patients with multimorbidity. This review aimed to determine the effectiveness of interventions designed to improve outcomes in people with multimorbidity in primary care and community settings, compared to usual care.MethodsWe searched eight databases and two trials registers up to 9th September 2019. Two review authors independently screened and selected studies, extracted data, evaluated study quality and judged the certainty of the evidence (GRADE). Interventions were grouped by their predominant focus into care-coordination/self-management support, self-management support and medicines management. Main outcomes were health related quality of life (HRQoL) and mental health. Meta-analyses were conducted, where possible, but the synthesis was predominantly narrative.ResultsWe included 16 RCTs with 4,753 participants, the majority being older adults with at least three conditions. There were eight care-coordination/self-management support studies, four self-management support studies and four medicines management studies. There was little or no evidence of an effect on primary outcomes of HRQoL (MD 0.03, 95% CI -0.01 to 0.07, I2 = 39%) and mental health or on secondary outcomes with a small number of studies reporting that care coordination may improve patient experience of care and self-management support may improve patient health behaviours. Overall the certainty of the evidence was graded as low due to significant variation in study participants and interventions. Conclusions There are remaining uncertainties about the effectiveness of interventions for people with multimorbidity, despite the growing number of RCTs conducted in this area. Our findings suggest that future research should consider patient experience of care, optimising medicines management and targeted patient health behaviours such as exercise.

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