Preparedness and Mutuality Affect Quality of Life for Patients With Mechanical Circulatory Support and Their Caregivers

BACKGROUND: Clinical and US regulatory guidelines for patients with mechanical circulatory support (MCS) require the identification of a caregiver to assist with MCS care. There is limited understanding of the impact of MCS caregiving on patients and caregivers. The purpose of this study was to examine how living with MCS affects the quality of life (QoL) of patients and their caregivers through the lens of preparedness and mutuality. METHODS AND RESULTS: The sample included 30 MCS patients and their caregivers. Semistructured qualitative interviews about factors contributing to QoL were conducted with patients and caregivers and analyzed using a 2-phase thematic process. Caregiving impacts QoL of MCS patients and their caregivers long term. When there was limited time to engage in decision-making about MCS implantation, people entered MCS caregiving relationships naive to its full demands. Although most people adjusted to the task demands, MCS caregiving had a significant impact, both positive and negative, on interpersonal relationships. We applied the concepts of preparedness and mutuality to help frame the understanding of the emergent themes of forced choice, adjustment, gratitude, relationship change, strain, and burden (both caregiver and patient perceived). Availability of networks of support was identified as a crucial resource. CONCLUSIONS: MCS caregiving affects QoL for both patients and caregivers. Specifically, preparedness, mutuality, and availability of supportive networks influence QoL of MCS patients and their caregivers. Caregiving relationships change over time. Long-term support by the MCS clinical team can help ensure that physical and emotional needs of MCS patients and caregivers are identified and addressed

Health and Functional Literacy in Physical Rehabilitation Patients

Background: People with disabilities, who face multiple barriers to care, experience health disparities, yet few studies have measured health literacy in this population. Objective: This study evaluated functional literacy, health literacy, fluid cognitive function, and self-reported health in people who live in community dwellings with spinal cord injury, stroke, or traumatic brain injury. Methods: Participants with a traumatic spinal cord injury, stroke, or traumatic brain injury, one-year postinjury, and age 18 to 85 years, completed a battery of instruments at three medical centers in the Midwestern U.S.: functional literacy (word recognition, vocabulary knowledge), health literacy (comprehension of prose, document, and quantitative health information), fluid cognitive function (memory, executive function, and processing speed), and patient-reported outcomes (mobility, fatigue, sadness, anxiety, social function, and overall health). Key Results: There were strong correlations between functional literacy, health literacy, and fluid cognitive function. After adjustment for sociodemographic and clinical characteristics, higher health literacy was associated with better mobility, less anxiety, and better overall health; higher functional literacy was associated with less anxiety and better overall health; and higher fluid cognitive function was associated with better mobility, less sadness, better social function, and better overall health. Conclusions: To effectively address limited health literacy among people with spinal cord injury, stroke, and traumatic brain injury, and ensure that they are able to be informed partners in their health care, intervention is required at the level of patients, providers, and health care delivery systems. A special consideration is to ensure that health information is both well-targeted to people's health literacy levels and accessible for people with a range of physical, cognitive, and sensory limitations. The multimedia self-administered health literacy measure used in this study could be useful to rehabilitation providers and designers of health information and interfaces. [Health Literacy Research and Practice. 2017;1(2):e71-e85.]. Plain Language Summary: Health literacy represents people's abilities to obtain, understand, and use health information to make informed decisions about their health and health care. People with disabilities face physical, attitudinal, economic, and structural barriers to care. Consideration of health literacy in rehabilitation practice can enhance the effectiveness of the patient-clinician relationship and help address the needs of this population