Dataset Information

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

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.

SUBMITTER: Song MK

PROVIDER: S-EPMC7380407 | biostudies-literature | 2019 May-Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Song Mi-Kyung MK Paul Sudeshna S Plantinga Laura L Henry Carrie C Turberville-Trujillo Linda L

Kidney medicine 20190510 3

<h4>Background</h4>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.<h4>Study design</h4>A cross-sectional ...[more]

PMID: 32734190

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Project description:Note: Data Use Restrictions: <ul> <li>The data must only be used for genetic research projects solely in the area of health-related social-network research.</li> </ul> This study compiles detailed information on family and social ties linked to participants in the offspring cohort of the Framingham Heart Study. The investigators took computerized information from self-report data used by the FHS for over 30 years to facilitate health exam scheduling. These tracking sheets asked participants to identify people close to them, which were assumed by the investigators to indicate a social tie. Individuals are listed as "egos" (if the ties are from their perspective) and/or "alters" (if they are linked as a friend or family members to one of the other participants). All egos were FHS offspring participants while alters could be FHS participants in any cohort or non-participants. This information was combined with internal FHS pedigree data on family ties to list family member alters (as well as the nature of their relationship). The resultant dataset therefore includes each ego-alter tie, the nature of their relationship and the start and end dates for their ties for each of seven waves for the offspring study. Due to privacy concerns, all exam dates for individuals are listed relative to the initial FHS exam date. The study investigators chose a random, confidential date, to which all initial exam dates are linked (by number of months from random date to initial exam date). With this information, researchers can have access to the temporal relationships among participants' exam dates while remaining unaware of the actual exam dates for individual participants. During each clinic exam cycle, the participants undergo a detailed examination including physical examination, medical history, laboratory testing, and electrocardiogram. Over the years, other tests (that may not be performed at every exam cycle) have included pulmonary function, lifestyle, physical function, cognitive function questionnaires, and various noninvasive cardiovascular tests including echocardiograms. This study involves phenotypic data from these exams including (when available) basic body measurements (height, weight, blood pressure), laboratory values (blood sugar levels, LDL levels), information on smoking and alcohol use, and tests of depression and cognitive functioning. Important links to apply for individual-level data <ol> <li><a href="http://dbgap.ncbi.nlm.nih.gov/aa/wga.cgi?view_pdf&stacc=phs000153.v3.p3" target="_blank">Data Use Certification Requirements (DUC)</a></li> <li><a href="GetPdf.cgi?id=phd001183.1" target="_blank">Instructions to Request Authorized Access</a></li> <li><a href="http://view.ncbi.nlm.nih.gov/dbgap-controlled" target="_blank">Apply here for controlled access to individual level data</a></li> <li><a href="GetPdf.cgi?id=phd000317" target="_blank">Participant Protection Policy FAQ</a></li> </ol> In 1948, researchers recruited men and women from the town of Framingham, Massachusetts, beginning the first round of extensive physical examinations and lifestyle interviews that would later be analyzed for common patterns related to CVD development. Initially, the Framingham Heart Study enrolled 5,209 men and women from the Framingham area who were between the ages of 28 and 62 years. Beginning in 1971, the Framingham Heart Study enrolled 5,124 men and women, who were either offspring of the original cohort or spouses of those offspring. In 2002, 4,095 third generation participants (men and women) were enrolled.

Dataset Information

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

Background

Study design

Setting & participants

Factors

Measurements/outcomes

Results

Limitations

Conclusions

Publications

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

Similar Datasets

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