Understanding the Impact of Patients’ Disease Types on Caregiving Time and Caregiver Burden: An Analysis of the Health Information National Trends Survey

Abstract

Background: Patients with different medical conditions often have distinctive caregiving needs that could result in varying levels of caregiver burden. However, despite empirical advances in this area, little is known about how patients’ disease types interact with caregiving time and caregiver burden. To bridge this gap, we examined the impact of patients’ disease types on caregiving time and burden. Methods: Data were analyzed from the 2018 Health Information National Trends Survey 5 Cycle 2. Only participants self-identified as caregivers were included in the final analysis. Data on patients’ disease types, caregiving time (i.e., caregiving duration and caregiving hours spent per week), and caregiver burden (i.e., caregivers’ self-rated health, body mass index, and psychological distress) were examined using logistic regression analysis.Results: Patients’ disease types impacted caregiving time and burden. Caregivers of patients with neurological disease spent the greatest amount of time. For caregiver burden, caregivers of patients with cancer or aging related disease experienced worst self-rated health, caregivers of patients with orthopedic disease have the greatest likelihood to be overweight or obese, while cancer caregivers experienced greatest levels of psychological distress. Conclusions: Patients’ disease types had highly varied effects on caregiving time and burden. This study underscores the need for healthcare researchers to adopt a nuanced approach in acknowledging and addressing the burden of care experienced by caregivers, such as tailoring interventions based on both patients and caregivers’ characteristics and preferences.

Cohort profile: The ENTWINE iCohort study, a multinational longitudinal web-based study of informal care

“…Furthermore, although informal care is often treated as a ‘free’ resource in long-term care systems, it is now well established that informal caregivers’ time might not be costless, while they also incur substantial economic [ 32 , 33 ] and non-economic (e.g., health and well-being) costs [ 34 , 35 ]. Also, these costs are disproportionate among different groups of informal caregivers (e.g., caregivers of patients with different types of conditions) and are associated with negative caregiving outcomes [ 35 – 39 ].…”