RESUMEN
Background and Objectives: Caregiving is a social process and commonly involves more than a single caregiver, especially for older adults with multimorbidity, including dementia. This study was to characterize informal caregiving networks of older adults with dementia superimposed on multimorbidity (e.g., end-stage kidney disease) and to examine the relationships of network properties to outcomes of caregivers and older adults. Research Design and Methods: An egocentric social network survey was conducted. Up to 3 family caregivers of older adults on dialysis who had moderate-to-severe irreversible cognitive impairment with or without a documented diagnosis of dementia were recruited from 11 dialysis centers in 2 states. Caregivers completed a social network survey about individuals providing caregiving to the older adult and measures of caregiving burden and rewards, depression, and financial hardship. Older adults' emergency department visits and hospital admissions during the past 12 months were abstracted from the medical records. Results: A total of 76 caregiver informants of 46 older adults (78% Black) participated in the study. Of the 46 older adults, 65% had a multimember network (median size of 4). As the network density (the proportion of ties between members among all possible ties) increased, primary caregivers' financial hardship decreased whereas nonprimary caregivers' financial hardship increased. Further, for every 1-unit increase in mean degree (the average number of connections among members), there was a nearly fourfold increase in the odds of no hospital admission during the prior year for the older adult. Discussion and Implications: The network dynamics of informal caregiving networks may have an impact on the well-being of caregivers and older adults with dementia, but confirmatory longitudinal studies are needed.
RESUMEN
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.