Veterans who survive multiple traumatic injuries, including traumatic brain injuries (TBI), must often rely on family caregivers for ongoing care and support with reintegration. Understanding factors associated with caregiving that help or harm caregivers' health is critical for identifying appropriate and effective interventions that support caregiver health and promote the provision of quality care to veterans. This study utilized cross-sectional data from the Family and Caregiver Experiences Study, a survey of 564 caregivers caring for veterans who served after September 11, 2001, survived TBI/polytrauma during service, and received inpatient rehabilitation care in a Veterans Affairs Polytrauma Rehabilitation Center. Structural equation modeling was used to examine the relationship between caregiver stress (i.e., veterans' neurobehavioral problems and intensity of care required), and caregiver well-being (i.e., caregiver burden and mental health). Analyses also examined how intrapersonal, family or social, and financial resources mediate and moderate the relationship between caregiver stress and well-being. Results indicate that veterans' neurobehavioral problems and intensity of required care were associated with more caregiver burden, and more burden was associated with poor mental health. Intrapersonal and family or social resources mediated the relationship between veteran functioning and mental health. Family or social resources also moderated the relationship between care intensity and burden. The model explained a moderate amount of variability in burden (59%) and a substantial amount in mental health (75%). We conclude that caregivers of veterans with neurobehavioral problems who require intense care are at risk for burden and poor mental health. Increasing resources to bolster family or social resources may reduce risks. (PsycINFO Database Record
Results contribute to an emergent body of research that utilizes patient preferences to achieve the goals of person-centered care. The complexity of these responses substantiates the use of qualitative inquiry to thoroughly assess and integrate NH resident preferences into the delivery of person-centered care.
Knowledge of individuals’ everyday preferences is a cornerstone of person-centered care (PCC). Initial evidence demonstrates the positive impact of honoring preferences in care for older adults receiving long-term services and supports (LTSS). Yet, the mechanisms through which preference-based care affects individual well-being remain poorly understood. This article proposes a theoretical model of PCC entitled the Preference-Based Model of Care that integrates the Theory of Human Motivation, Self-determination Theory, the Competence-Press Model of person and environment fit, the Living Systems Framework, and the Broaden-and-Build theory of positive emotions to deepen our understanding of the processes through which preference-based care affects well-being among older adults receiving LTSS. The Preference-Based Model of Care illustrates how goal-directed behaviors facilitate need fulfillment through the expression of individual preferences and how these behaviors mediate the relationship between person–environment fit and affect balance within a particular social, cultural, and political context. The Preference-Based Model of Care can advance research on PCC in LTSS and can inform LTSS clinical practice guidelines for older adults, regardless of functional or cognitive capacity.
While dementia caregivers are regarded as a population with high unmet needs, there is little consensus as to how caregivers' needs should be conceptualized and measured. This article describes how dementia caregivers' needs are currently assessed in the scientific literature with the goal of suggesting guidelines for the enhancement of future measurement of caregiver needs. A review of 26 articles identified overarching themes within measurement approaches including variation in methodological rigor, proxy indicators of need, dual needs assessment of caregiver and person with dementia (PWD), and third-party needs assessment. We recommend future research dedicate theoretical attention to the conceptualization and classification of caregivers' needs to build a stronger foundation for measurement. The measurement development process should capitalize on mixed-methodology and follow instrument development and validation guidelines set forth by measurement theory. Reliable and valid instruments are essential to developing services and policies that address dementia caregivers' needs.
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