Family caregiving, family dynamics, and preparedness for the transition to end-of-life care

2021 Summer.Includes bibliographical references.Taking on the role of family caregiver to an adult family member with health or functional needs can be a time consuming, stressful, and physically demanding responsibility, and often leads to adverse psychological or physical outcomes. As family members near the end of their life, their physical, emotional, social, and spiritual care needs may become increasingly complex, and family caregivers are an integral part of providing care and comfort during this time. Yet, individuals providing end-of-life (EOL) care for a family member are vulnerable to additional emotional and psychological stress and strain, and often indicate they do not have the knowledge or skills needed for providing this type of care. Little is known about what factors may help family caregivers feel more prepared for EOL caregiving, or how family dynamics (such as relationships, interactions, and communication) between the caregiver, care receiver, and other family members may affect these feelings of preparedness. Thus, the purpose of this dissertation was to explore how family caregivers perceive their preparedness for the transition to EOL caregiving and how family dynamics may be associated with feelings of preparedness. To frame this work, the manuscript in Chapter 2 presents the Conceptual Framework for a Bioecological Model of Family Dynamics and the Transition to EOL Caregiving. This model is an innovative theoretical approach to investigating the various individual- and family-level contexts that may affect family caregiver outcomes. The conceptual framework provides a tool to examine family caregivers' personal characteristics, family contexts (such as the familial relation between the caregiver and care receiver), factors of time (such as duration of care and hours of care provided each week), and family processes (such as advance care planning conversations) that may be connected to perceived preparedness for the transition to EOL caregiving. The study presented in Chapter 3 utilizes the conceptual framework to explore family caregivers' perceived preparedness for caregiving. Results indicate that overall, family caregivers feel somewhat prepared to provide care to their care receiver but feel not too well prepared for the transition to EOL caregiving, regardless of age, gender, race, ethnicity, or education. The study presented in Chapter 4 builds on these findings and explores how family dynamics may be associated with family caregivers' feelings of preparedness. The results of this study failed to demonstrate an association between the constructs of family dynamics and caregiver preparedness, and several theoretical and methodological considerations are examined to potentially explain these findings. It may be that family dynamics are not well understood in caregiving families, and different elements of family dynamics are important at different stages of caregiving and during the transition to EOL care. The results, strengths, and limitations of this comprehensive dissertation study should inform future basic and applied studies to advance family caregiving research. Importantly, there is a need to development more valid and reliable measures of family dynamics for aging and caregiving families, and interventions to help families prepare for future care needs and caregiving transitions such as the transition to EOL care. As researchers and practitioners learn more about how to prepare family caregivers and their families for the transition to EOL care, this may improve family caregiver and family-level outcomes, and help families best meet the care wishes and improve life satisfaction for individuals at the end of their life