Parents making medical decisions for a child living with a life-threatening condition confront, sometimes repeatedly, an extremely daunting task, one almost beyond imagination: how to decide when to set aside the therapeutic goal of cure or of life prolongation and instead prioritize the goals of comfort or quality of life. Over the past five years, our research team has developed an integrative psychosocial conceptual model that we employ to aid parents in palliative care decision making. Components of this model include a) evaluating goals and potential re-goaling, b) assimilating cognitive information, c) managing emotional input and influences, and d) working collaboratively between parents and health care providers. We propose to conduct cohort study of parents whose children are confronting life-threatening illnesses (responding to PA-09-122- Research on Clinical Decision Making in People with or at Risk for Life-Threatening Illness (R01)) in intensive care, palliative care, and complex care settings, enrolling 200 parents with follow-up measures at transition to home, 6, 12, 18, and 24 months, specifically aiming to quantify the association between baseline measurements of parental hopeful patterns of thinking, positive and negative affect, thoughts regarding the child's health trajectory, degree of social support, concordance within parental dyads regarding the major problems and hopes for their child, and judgments regarding potential attributes of "being a good parent" for their child, and the subsequent decisions made regarding the care of the children and potential reprioritization of therapeutic goals over time. We hypothesize that parents with higher levels of hopeful patterns of thinking will be more likely, upon formal reassessment, to subsequently 1) have changed the child's limit of intervention order status;2) reprioritize goals of care for the child, and 3) report higher levels of achieving what they deem to be important attributes of being a "good parent" for their child. The resulting improved understanding of parental decisionmaking can subsequently be used to enhance the quality of palliative care decisionmaking, with future development and testing of an evidence-based intervention for parental decisionmaking support. The multi- disciplinary research team will benefit from the guidance of a panel of consultants, including parents and national pediatric palliative care experts.
Efforts to improve the care of children with life-threatening complex chronic conditions are currently hampered by limited understanding of the decisionmaking process actually engaged in by parents when they are confronted with often uncertain and dire situations. Building on a previous study of decisionmaking by parents of children receiving palliative care consultative services, this cohort study will follow 125 children and approximately 200 parental adults, examining the process of decisionmaking longitudinally and the impact on decisionmaking of hopeful patterns of thought, positive and negative affect, and the child's illness trajectory.