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Families of children with medical complexity (CMC) face many types of health-related decisions. These decisions vary in magnitude of consequences, degree of risk, time scale, degree of tradeoffs, degree of uncertainty, degree of linkage with other decisions, and reversibility. There are many influences on decision-making, including evidence, hopes, and values. Primary care pediatricians are in a unique position to assist families of CMC with decision-making. Pediatric clinicians have an opportunity to establish a trusting relationship with a family over time and to understand the family's values, beliefs, and preferences during periods of relative health and stability. This allows primary care pediatricians to support families in decision-making by helping to clarify their values and goals and apply those values to the decision at hand. [Pediatr Ann. 2020;49(11):e473-e477.]., (Copyright 2020, SLACK Incorporated.)

Background: Hopes of parents of children with serious illness play an important role in decision-making and coping. Little is known about how parent hopes change over time. We describe the changes in parent hopes across multiple domains and time intervals, examine hopes in a subgroup of parents whose child died, and explore the maintenance of domains over time., Methods: In a mixed-methods prospective cohort study on decision-making, parents of seriously ill children reported demographic characteristics and hopes at baseline and reported any changes in hopes at 4-, 8-, 12-, 16-, and 20-month follow-up visits. Hopes were coded into 9 domains. Hope changes and domain changes were identified for each parent at each visit., Results: One hundred and ninety-nine parents of 158 patients most often reported hopes in the domains of quality of life (75%), physical body (69%), future well-being (47%), and medical care (34%). Hope percentages increased over time for quality of life (84%), future well-being (64%), and broader meaning (21%). The hope domains reported by parents of children who died were similar to the rest of the sample. The majority of parents who completed 5 to 6 follow-up visits changed at least 1 domain. At the individual parent level, some domains revealed considerable change over time, whereas other domains were stable among a subset of parents., Conclusions: The specific hopes and overall areas of hope of parents of seriously ill children vary over time, although most hopes fall within 4 major areas. Accordingly, clinicians should regularly check with parents about their current hopes., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2018 by the American Academy of Pediatrics.)

Objective: To assess parental decision-making preferences when caring for a child with serious illness and to evaluate for an association between preferences and parental trust in physicians, and potential modification of this association by parental anxiety or depression. Methods: We analyzed cross-sectional data from 200 parents of 158 children in the United States who had life-threatening illnesses and whose attending physicians thought that the parents would have to make major medical decision in the next 12 to 24 months. Parents completed measures of decision-making preferences, trust in physicians, anxiety, and depression. Results: Higher reported levels of trust were associated with lower preferences for autonomous decision making (Spearman correlation = −0.24; 95% confidence interval [CI] = −0.36 to −0.01; p < 0.008). Among parents with higher levels of trust, increasing anxiety scores were associated with decreasing preference for autonomy, whereas among parents with lower levels of trust, increasing anxiety scores showed an increasing preference for autonomy (regression coefficient = −0.01; 95% CI = −0.02 to −0.001; p ≤ 0.03). Conclusions: Decreasing trust in physicians is associated with a higher preference for autonomous decision making. Parents who have higher levels of anxiety exhibit this association more strongly. Decision support for parents of children with serious illness should use strategies to respect parental decision-making preferences, address potential distrust, and provide mental health support to parents who are anxious or depressed. [ABSTRACT FROM AUTHOR]

Context: Parents of seriously ill children hold personal beliefs about what they should do to be good parents. How these beliefs change over time is unknown.Objectives: The objectives of this study were to describe the pattern of Good-Parent Beliefs over time, and determine whether parents' hopeful patterns of thinking, affect, and perceived child's health are associated with changes in beliefs at 12 and 24 months.Methods: Our longitudinal sample included 124 parents of 100 children hospitalized with serious illness. We used latent transition models to classify parents into groups with similar Good-Parent Beliefs during the baseline and follow-up periods and modeled the change in good-parent beliefs over time as a function of covariates using generalized linear mixed models.Results: Two parent belief profiles emerged from the latent transition model: Loved ("Making sure my child feels loved," n = 61 at baseline) and Informed ("Making informed decisions," n = 63 at baseline). At 12 months, 21 parents (20.4%) had moved into the Loved group and no parents transitioned to the Informed group. By 24 months, eight parents transitioned to the Loved group and four to the Informed group (13.04%). Transition into the Loved group was associated with parents' baseline degree of hopeful thinking and positive perceptions of child's health at baseline.Conclusion: Some parents change their parenting priorities over time. Hopeful patterns of thinking and perception of child health appear to predict change. Clinicians should regularly reevaluate Good-Parent Beliefs over time to promote priority-congruent dialogue. [ABSTRACT FROM AUTHOR]

The article presents a study which determines the problems and hopes reported by parents and physicians of children receiving palliative care. The researchers detail the study methodology to observe concordance between participants and to calculate the most common problem domains. It suggests that asking parents and physicians to discuss the problems and hopes may help provide a straightforward means to improve the quality of shared and informed decision making for critically ill children.

Background: Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child's quality of life. We call this process of transitioning from one set of goals to another regoaling. Discussion: Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care. Summary: The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process. [ABSTRACT FROM AUTHOR]