Development and validation of the parent experience of child illness
Family; Parents; PedPal Lit; Caregiver; Child Illness
Objective To develop a measure of parent adjustment related to caring for a child with achronic illness and to evaluate the reliability and validity of the measure with a group of parentsof children with brain tumors. Methods One-hundred forty-nine parents of patients(age <1–17 years) diagnosed with a brain tumor were assessed using the 25-item self-reportParent Experience of Child Illness (PECI). Internal consistency, construct validity, and factorstructure were assessed. Results Exploratory factor analysis yielded four theoreticallycoherent factors including: Guilt and Worry, Emotional Resources, Unresolved Sorrowand Anger, and Long-term Uncertainty. Internal reliability for the PECI scales ranged from.72 to .89, suggesting acceptable reliability. As evidence of construct validity, the PECI scalesshow significant, positive correlations with scales from established measures of parentadjustment. Conclusion The PECI augments the current literature by providing a briefmeasure of parents’ subjective distress and perceived Emotional Resources, domains that arecritical but understudied in children with chronic illness and their caregivers.
2005
Bonner MJ; Hardy KK; Guill AB; McLaughlin C; Schweitzer H; Carter K
Journal of Pediatric Psychology
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj034" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj034</a>
Inpatient Pediatric Palliative Care Consult Requests and Recommendations
children; Pediatric palliative care; inpatient palliative care; palliative care consults
INTRODUCTION: Little is known about the requests for and recommendations from inpatient pediatric palliative care (PPC) consults and whether they differ by patient location (ward vs. intensive care unit) or patient type (new vs. established with PPC). METHODS: Single-center, retrospective cohort study comparing PPC consult requests and recommendations for children who received a PPC consult between January 1, 2018 and June 30, 2019. Comparisons were made by patient location and patient type using bivariate statistics. RESULTS: Three hundred twenty-seven PPC encounters were evaluated. Symptoms were more likely to be addressed in consults for ward patients than for intensive care unit patients. Compared with established patients, consults for new patients occurred significantly later in the hospital course and were more likely to be for psychosocial support or goals of care. DISCUSSION: We found variability in PPC consult requests and recommendations that may inform future work and targeted education for primary providers.
Carter K; Raybin J; Ambroggio L; Frydenlund M; Thomas J; Squiers K; Brittan M
Journal of Pediatric Health Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.pedhc.2021.10.004" target="_blank" rel="noreferrer noopener">10.1016/j.pedhc.2021.10.004</a>
Paying Family Medical Caregivers for Children's Home Healthcare in Colorado: A Working Medicaid Model
children with medical complexity; Medicaid; children with special health care needs; Colorado; Caregiving
OBJECTIVE: To compare the characteristics and healthcare utilization of children with medical complexity (CMC) who receive paid certified nursing assistant (CNA) care by a family member (family CNA) and by a traditional non-family member (non-family CNA). STUDY DESIGN: This was retrospective cohort study of children who received CNA care through Colorado's Medicaid paid family caregiving program between 2017-2019 by a home healthcare agency. We compared patient characteristics between the family CNA and non-family CNA groups. A multivariable Poisson regression model was used to compare hospitalization rates (days in the hospital per year), adjusting for patient age patient sex, nursing care, and complex chronic condition. RESULTS: Of 861 patients, 79% (N=680) received family CNA care and 21% (N=181) received non-family CNA care. Patient demographics and hospitalization did not differ between the groups, although family CNA patients were less likely to receive additional nursing-level care (42% versus 60%, p<0.01). Family and non-family CNA caregivers had similar characteristics, except that family CNA caregivers had substantially better 3-year retention (82% versus 9%, p<0.01) despite lower average hourly pay ($14.60 vs. $17.60 per hour, p<0.01). Hospitalizations were rare (<10% of patients). In the adjusted model, family CNA patients experienced 1 more hospitalized day per year, compared with non-family CNA patients (p<0.001). CONCLUSIONS: Paid family caregivers provided CNA level care to CMC with a greater employee retention compared with non-family CNA caregivers, with marginally different hospitalization rates using a family-centered approach. This model may help address workforce shortages while also providing income to family caregivers.
Foster C; Kwon S; Blakely C; Carter K; Sobotka SA; Goodman DM; Agrawal R; Brittan M
The Journal of Pediatrics
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2022.12.043" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2022.12.043</a>