Parenting with Life-Limiting Illness: Strategies to Support Families with Dependent Children (FR437)

Abstract

•Understand common psychological concerns at the end-of-life for parents with life-limiting medical illness and their children and how these concerns influence parental medical decision-making and advance care planning.•Describe methods to elicit parental concerns among adult patients from a range of cultural backgrounds, identify available resources and communication strategies to help address their parenting concerns. Patients living with life-limiting illness who are raising dependent children face unique stressors during the period of terminal illness and end-of-life. Parents have concerns about the impact of their disease and potential death on their children and their ability to simultaneously manage treatment and caregiving responsibilities. They also have concerns about how to optimally communicate with children, particularly when treatment choices or prognosis is uncertain. Among parents with advanced cancer, the severity of parental concerns is linked to increased symptoms of anxiety and worse health-related quality of life. Thus, understanding and knowing how to address the concerns of parents with life-limiting illness is critically important to providing quality care for these individuals. Most adult palliative medicine providers do not receive extensive training on how to promote parental communication with dependent children based upon developmental stage. Further, differences exist across families and cultures in the value placed on openness of communication. Developing skills to elicit and address parental concerns, particularly for patients and families with diverse household structures and cultural backgrounds, can substantially reduce their psychological distress. This concurrent session aims to address a critical gap in knowledge about how to meet the supportive care needs of adult patients with dependent children. Presenters will address the unique concerns of parents with life-limiting illness and their challenges around medical decision-making and advance care planning. Presenters will also review strategies to elicit parental concerns both clinically and with a standardized measure, and discuss strategies for developmentally-appropriate parental communication with children. In this interactive session, presenters will use their clinical experience in pediatrics, psychology, and psychiatry as well as case studies, review of literature, and evidence-based research to facilitate learning.