Objective To identify factors important to parents making decisions for their critically ill child. Design Prospective cross-sectional study. Setting Single center, tertiary care PICU. Subjects Parents making critical treatment decisions for their child. Intervention One-on-one interviews that used the Good Parent Tool-2 open-ended question that asks parents to describe factors important for parenting their ill child and how clinicians could help them achieve their definition of “being a good parent” to their child. Parent responses were analyzed thematically. Parents also ranked themes in order of importance to them using the Good Parent Ranking Exercise. Measurement and Main Results Of 53 eligible parents, 43 (81%) participated. We identified nine themes through content analysis of the parent’s narrative statements from the Good Parent Tool. Most commonly (60% of quotes) components of being a good parent described by parents included focusing on their child’s quality of life, advocating for their child with the medical team, and putting their child’s needs above their own. Themes key to parental decision making were similar regardless of parent race and socioeconomic status or child’s clinical status. We identified nine clinician strategies identified by parents as helping them fulfill their parenting role, most commonly, parents wanted to be kept informed (32% of quotes). Using the Good Parent Ranking Exercise, fathers ranked making informed medical decisions as most important, whereas mothers ranked focusing on the child’s health and putting their child’s needs above their own as most important. However, mothers who were not part of a couple ranked making informed medical decisions as most important. Conclusion These findings suggest a range of themes important for parents to “be a good parent” to their child while making critical decisions. Further studies need to explore whether clinician’s knowledge of the parent’s most valued factor can improve family-centered care.
OBJECTIVE Health care disparities have been described for children of limited English-proficient (LEP) families compared with children of English-proficient (EP) families. Poor communication with the medical team may contribute to these worse health outcomes. Previous studies exploring communication in the PICU have excluded LEP families. We aimed to understand communication experiences and preferences in the 3 primary communication settings in the PICU. We also explored LEP families’ views on interpreter use in the PICU. PATIENTS AND METHODS EP and Spanish-speaking LEP families of children admitted to the PICU of a large tertiary pediatric hospital completed surveys between 24 hours and 7 days of admission. RESULTS A total of 161 of 184 families were surveyed (88% response rate); 52 were LEP and 109 EP. LEP families were less likely to understand the material discussed on rounds (odds ratio [OR] 0.32, 95% confidence interval [CI] 0.11–0.90), to report that PICU nurses spent enough time speaking with them (OR 0.15, 95% CI 0.05–0.41), and to report they could rely on their nurses for medical updates (OR 0.07, 95% CI 0.02–0.25) controlling for covariates, such as education, insurance type, presence of a chronic condition, PICU length of stay, and mortality index. LEP families reported 53% of physicians and 41% of nurses used an interpreter “often.” CONCLUSIONS Physician and nurse communication with LEP families is suboptimal. Communication with LEP families may be improved with regular use of interpreters and an increased awareness of the added barrier of language proficiency.
Family presence increased the length of family-centered rounds despite a small percentage of time spoken by families, suggesting longer rounds are due to changes in provider behavior when families are present. Also, non-English-speaking families may need more support to be able to attend and benefit from family-centered rounds. Lastly, in an era of full family-centered rounds acceptance, families and most providers, except fellows, report benefit from family presence during family-centered rounds. However, providers should be aware of the perception of their behaviors to optimize the experience for families.
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