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Author Notes:

Mi-Kyung Song, PhD, RN, Center for Nursing Excellence in Palliative Care, Nell Hodgson Woodruff School of Nursing, Emory University, 1520 Clifton Rd NE, Atlanta, GA 30322. mi-kyung.song@emory.edu

Study concept and design: M-KS, SP, LP; acquisition of data: MS, CH, LT-T; analysis and interpretation of data: M-KS, SP, LP, CH, LT-T; statistical analysis: SP; obtained funding: M-KS; administrative, technical, or material support: M-KS; study supervision: M-KS.

Each author contributed important intellectual content during manuscript drafting or revision and accepts accountability for the overall work by ensuring that questions pertaining to the accuracy or integrity of any portion of the work are appropriately investigated and resolved.

The authors declare that they have no relevant financial interests.

Subjects:

Research Funding:

This study was supported by the Center for Nursing Excellence in Palliative Care, Emory University. The funding source had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; or decision to submit the manuscript for publication.

Keywords:

  • Chronic illness management
  • care coordination
  • dialysis
  • kidney failure
  • social network

Social Networks of Self-care and Perceived Treatment Burden Among Patients on In-Center Hemodialysis

Tools:

Journal Title:

Kidney Medicine

Volume:

Volume 1, Number 3

Publisher:

, Pages 97-103

Type of Work:

Article | Final Publisher PDF

Abstract:

Background: Dialysis patients manage not only the demand of dialysis but also other complex chronic conditions. These individuals may draw upon personal and social resources to cope with the demands of self-management and care coordination. This study was designed to describe social networks for self-management and care coordination among hemodialysis patients and explore the association between network characteristics and perceived treatment burden. Study Design: A cross-sectional study using social network analysis. Setting & Participants: 20 patients from an outpatient dialysis center. Factors: Social network characteristics (eg, size and connectivity) and perceived treatment burden. Measurements/Outcomes: Participants completed a battery of questionnaires, including the Patient Experience With Treatment and Self-management Questionnaire (measuring perceived treatment burden) and a social network survey asking the respondent to name up to 5 people to whom he or she turned for help with self-care and care coordination tasks and their characteristics and relationships. Results: Participants were aged 53.4 years on average, half were women, and 18 were African Americans. On average, network size was 3.1 members, most of whom were women and family members. 7 patient networks included at least 1 health care provider. The clustering coefficient (the overall connection between members) was 0.54, suggesting that not all members within the patient's network were connected with each other. Multimorbidity was not associated with treatment burden domain scores, but greater network connectivity was associated with lower treatment-related financial burden (r = −0.61). Limitations: The small sample was racially homogeneous and precluded controlling for potential confounding factors. Conclusions: Dialysis patients used networks of people to manage self-care and coordination tasks, but interconnectedness between members of individual patients’ networks was limited, which might negatively affect their perceived treatment burden. The social context of dialysis patients could play an important role in their illness management and treatment burden and calls for future research.

Copyright information:

© 2019 The Authors

This is an Open Access work distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (https://creativecommons.org/licenses/by-nc-nd/4.0/).
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