Family caregivers of older adults on home enteral nutrition have multiple unmet task-related training needs and low overall preparedness for caregiving

Objectives We used stress process theory to identify family caregiving variables that are salient to the experience of managing older adults' home enteral nutrition. In this article, we describe the specific tasks family caregivers performed and their unique training needs in the context of caregiver preparedness, competence, effectiveness, and health care use. Design Hospital billing lists from two university-affiliated institutions in Miami, FL, were used to identify older adults who had enteral tubes placed over a 6-month period. Consent was obtained from those older adults discharged for the first time on home enteral nutrition and their family caregivers at the first scheduled outpatient visit. Subjects/Setting In-home interviews were conducted with a diverse sample of 30 family caregivers (14 white, 8 Hispanic, 7 African-American, I Asian) during their first 3 months (mean=1.83+/-0.69 months) of home enteral nutrition caregiving. Statistical Analyses Performed Descriptive statistics were used to summarize data for all variables; chi(2) analysis was conducted to analyze differences in categorical variables. One-way analysis of variance was used to analyze mean differences among caregivers grouped by ethnicity for total number of hours and tasks performed. Post hoc comparisons were conducted using the Tukey HSD test. The Spearman rho correlations were calculated to assess bivariate associations between quantitative variables. Results Caregivers reported providing from 6 to 168 hours of care weekly (mean=61.87+/-49.67 hours), in which they performed an average of 19.73+/-8.09 caregiving tasks daily. Training needs identified were greatest for technical and nutrition-related tasks. Preparedness for caregiving scores were low (mean=1.72, maximum=4.0) and positively correlated with caregiver competence (P<.001) and self-rated caregiver effectiveness (P=.004). Preparedness negatively correlated with health care use (P=.03). Conclusions Caregivers of older adults on home enteral nutrition need training for multiple nutrition-related and caregiving tasks. Multidisciplinary interventions, involving dietitian expertise, are needed to better prepare caregivers to improve both caregiver effectiveness and enteral nutrition outcomes.