Parents' decision-making regarding whether to receive adult-onset only genetic findings for their children: Findings from the BabySeq Project.

PURPOSE: Most professional guidelines recommend against genetic screening for adult-onset only (AO) conditions until adulthood, yet others argue that there may be benefit to disclosing such results. We explored parents' decision-making on this issue in the BabySeq Project, a clinical trial of newborn genomic sequencing. METHODS: We conducted interviews with parents (N = 24) who were given the option to receive actionable AO results for their children. Interviews explored parents' motivations to receive and reasons to decline AO genetic disease risk information, their decision-making process, and their suggestions for supporting parents in making this decision. RESULTS: Parents noted several motivations to receive and reasons to decline AO results. Most commonly, parents cited early intervention/surveillance (n = 11), implications for family health (n = 7), and the ability to prepare (n = 6) as motivations to receive these results. The most common reasons to decline were protection of the child's future autonomy (n = 4), negative effect on parenting (n = 3), and anxiety about future disease (n = 3). Parents identified a number of ways to support parents in making this decision. CONCLUSION: Results show considerations to better support parental decision-making that aligns with their values when offering AO genetic information because it is more commonly integrated into pediatric clinical care.

The Influence of Parents' Religiosity or Spirituality on Decision Making for Their Critically Ill Child: An Integrative Review.

Background: Religion and/or spirituality are important values for many parents of critically ill children; however, how religion and/or spirituality may influence which treatments parents accept or decline for their child, or how they respond to significant events during their child's illness treatment, remains unclear. Objective: To summarize the literature related to the influence of parents' religiosity or spirituality on decision making for their critically ill child. Design: Integrative review, using the Whittemore and Knafl approach. Setting/Subjects: Data were collected from studies identified through PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL plus), Embase, Scopus, and PsychInfo. Databases were searched to identify literature published between 1996 and 2016. Results: Twenty-four articles of variable methodological quality met inclusion criteria. Analysis generated three themes: parents' religiosity or spirituality as (1) guidance during decision making, (2) comfort and support during the decision-making process, and (3) a source of meaning, purpose, and connectedness in the experience of decision making. Conclusion: This review suggests that parents' religiosity and/or spirituality is an important and primarily positive influence on their decision making for a critically ill child.

Reducing Preschool Behavior Problems in an Urban Mental Health Clinic: A Pragmatic, Non-Inferiority Trial.

OBJECTIVE: This pragmatic, randomized, non-inferiority trial compared the effectiveness and cost of group-based parent management training with mastery-based individual coaching parent management training in a low-income, predominantly African American sample. METHOD: Parents seeking treatment for their 2- to 5-year-old children's behavior problems in an urban fee-for-service child mental health clinic were randomized to the Chicago Parent Program (CPP; n = 81) or Parent-Child Interaction Therapy (PCIT; n = 80). Consent followed clinic intake and diagnostic assessment and parent management training was delivered by clinicians employed at the clinic. Primary outcome measures were externalizing child behavior problems, assessed at baseline and postintervention follow-up, using the Child Behavior Checklist (CBCL) and average per-participant treatment cost. RESULTS: Data from 158 parents were analyzed. Most were mothers (75.9%), African American (70.3%), and economically disadvantaged (98.7% Medicaid insured). Of children, 58.2% were boys, and mean age was 3.6 years (SD 1.03). Based on CBCL scores, behavior problems improved in the 2 conditions (Cohen d = 0.57 for CPP and 0.50 for PCIT). CPP was not inferior to PCIT (90% CI -1.58 to 4.22) at follow-up, even after controlling for differences in treatment length (90% CI -1.63 to 4.87). Average per-participant treatment cost was higher for PCIT (mean $2,151) than for CPP (mean $1,413, 95% CI -1,304 to -170). CONCLUSION: For parents of young children living in urban poverty, CPP is not inferior to PCIT for decreasing child behavior problems. CPP requires less time to complete and costs a third less than PCIT. CLINICAL TRIAL REGISTRATION INFORMATION: Early Parenting Intervention Comparison (EPIC); https://clinicaltrials.gov/; NCT01517867.

Patient navigation and clinical trial participation: A randomized controlled trial design.

BACKGROUND: To our knowledge, no published studies utilizing a randomized controlled design have examined the efficacy of patient navigation for improving clinical trial enrollment. METHODS: This patient navigation and clinical trial participation study is a randomized controlled trial to assess the effect of a patient navigator on enrollment into therapeutic cancer clinical trials. Participants are randomly assigned to high intensity, patient navigator-delivered patient educational materials (PEM) and needs assessment vs. low intensity patient navigation (patient navigator-delivered patient educational materials [PEM] alone). Discussion: Effective enrollment strategies may include utilization of patient navigators as away to meet individual needs, barriers, and concerns of participants enrolled in clinical trials.