Publications by authors named "Kari R Hexem"
Parents' satisfaction with repair of paediatric cleft lip/cleft palate in Honduras.
Paediatr Int Child Health
August 2013
Background: Operation Smile is a non-profit organization that provides free cleft lip and cleft palate repair to impoverished children worldwide. To date, no longitudinal studies of satisfaction among these patients or their families have been published.
Objectives: In a cohort of parents of children receiving cleft lip/cleft palate repair, to assess parental satisfaction and fulfillment of expectations.
Background: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child.
Objective: (i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left 'hopeless'.
Method: Seventy-one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care.
Context: Conflicts between families and clinicians in pediatric end-of-life (EOL) care cause distress for providers, dissatisfaction for patients' families, and potential suffering for terminally ill children.
Objectives: We hypothesized that family factors might influence clinician decision making in these circumstances.
Methods: We presented vignettes concerning difficult EOL decision making, randomized for religious objection to therapy withdrawal and perceived level of family involvement, to clinicians working in three Children's Hospital intensive care units.
Context: Communication is widely acknowledged as a crucial component of high-quality pediatric medical care, which is provided in situations in which parents typically experience strong emotions.
Objectives: To explore emotion using the Linguistic Inquiry and Word Count (LIWC) and a self-report questionnaire to better understand the relationship between these two measures of emotion in a pediatric care context.
Methods: Sixty-nine parents of 47 children who were participants in the Decision Making in Pediatric Palliative Care Study at The Children's Hospital of Philadelphia took part in this study.
Objective: To assess parental decision-making preferences in the high-stress environment of the pediatric intensive care unit and test whether preferences vary with demographics, complex chronic conditions, prior admissions to the pediatric intensive care unit, and parental positive and negative emotional affect.
Design: Institutional Review Board-approved prospective cohort study conducted between December 2009 and April 2010.
Setting: Pediatric intensive care unit at The Children's Hospital of Philadelphia.
Background And Objective: Trisomy 13 and trisomy 18 are generally considered fatal anomalies, with a majority of infants dying in the first year after birth. The inpatient hospital care that these patients receive has not been adequately described. This study characterized inpatient hospitalizations of children with trisomy 13 and trisomy 18 in the United States, including number and types of procedures performed.
View Article and Find Full Text PDFBackground: Parental decision making is a critical component in the provision of palliative and end-of-life care, yet factors that parents perceive as influencing this process, when they are making decisions for their children, have not been well characterized.
Methods: As part of a mixed-methods cohort study, we interviewed 73 parents of 50 pediatric patients who were referred to the hospital's pediatric palliative care service. The semistructured interviews focused on "decision making for your child"; the interviews were recorded and transcribed.
Background: The work of care for parents of children with complex special health care needs may be increasing, while excessive work demands may erode the quality of care. We sought to summarize knowledge and develop a general conceptual model of the work of care.
Methods: Systematic review of peer-reviewed journal articles that focused on parents of children with special health care needs and addressed factors related to the physical and emotional work of providing care for these children.
Prevalence of polypharmacy exposure among hospitalized children in the United States.
Arch Pediatr Adolesc Med
January 2012
Objective: To assess the prevalence and patterns of exposure to drugs and therapeutic agents among hospitalized pediatric patients.
Design: Retrospective cohort study.
Setting: A total of 411 general hospitals and 52 children's hospitals throughout the United States.
Objective: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations.
Design, Setting, And Patients: Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008.
Results: There were 515 new (35.
Background: Although pediatric nurses working in children's hospitals often provide care to dying children, little is known about their palliative care beliefs and experiences as individuals or members of groups within the hospital.
Objective: To describe pediatric nurses' ratings of palliative care goals and problems, as individuals and members of clusters of nurses with similar views, and nurses' degree of collaboration with an inpatient palliative care team across hospital units.
Method: A cross-sectional survey of nurses at a freestanding children's hospital in 2005.
Background: How parents of children with life threatening conditions draw upon religion, spirituality, or life philosophy is not empirically well described.
Methods: Participants were parents of children who had enrolled in a prospective cohort study on parental decision-making for children receiving pediatric palliative care. Sixty-four (88%) of the 73 parents interviewed were asked an open-ended question on how religion, spirituality, or life philosophy (RSLP) was helpful in difficult times.
Objective: To test the hypothesis that hopeful patterns of thoughts and emotions of parents of pediatric patients receiving palliative care consultative services are related to subsequent decisions, specifically regarding limit of intervention (LOI) orders.
Design: Prospective cohort study.
Setting: Children's hospital and surrounding region.
Background: The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children.
Objective: To develop a prognostication models using administratively available data to predict the probability of in-hospital and 1-year postdischarge death.
Methods: Retrospective cohort study of 0-21 year old patients admitted to Pennsylvania hospitals from 1994-2001 and followed for 1-year postdischarge mortality, assessing logistic regression models ability to predict in-hospital and 1-year postdischarge deaths.