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American Academy of Pediatrics

Challenges Following Hospital Discharge for Children With Medical Complexity

Objectives: The transition from hospital to home is a period of risk, particularly for children with medical complexity. Our aim was to identify and address discharge challenges through execution of postdischarge phone calls.

Mon, 01/16/2023 - 13:54

Caregiver Decisional Conflict Before and After Consultation About Gastrostomy Tube Placement

Objectives: Families describe decision-making about gastrostomy tube (g-tube) placement as challenging. We measured caregiver decisional conflict before and after initial g-tube consultation to evaluate the potential benefit of a decision aid and feasibility in testing it.;

Mon, 01/16/2023 - 13:18

Barriers and Facilitators to Asthma Care After Hospitalization as Reported by Caregivers, Health Providers, and School Nurses

Objectives: To develop a comprehensive understanding of the barriers and/or facilitators for asthma management for the health professionals and caregivers of children with >1 hospitalization.

Mon, 01/16/2023 - 09:41

Family-Provided Health Care for Children With Special Health Care Needs

Background and Objectives: Many children with special health care needs (CSHCN) receive health care at home from family members, but the extent of this care is poorly quantified. This study's goals were to create a profile of CSHCN who receive family-provided health care and to quantify the extent of such care.

Tue, 01/10/2023 - 15:57

Identification of Caregiver-Reported Social Risk Factors in Hospitalized Children

Objectives: Although health systems are increasingly moving toward addressing social determinants of health, social risk screening for hospitalized children is largely unexplored. We sought to determine if inpatient screening was feasible and describe the prevalence of social risk among children and caregivers, with special attention given to children with chronic conditions.

Tue, 12/20/2022 - 11:28

Family Strategies to Support Siblings of Pediatric Hematopoietic Stem Cell Transplant Patients

Objective: To describe the strategies families report using to address the needs and concerns of siblings of children, adolescents, and young adults undergoing hematopoietic stem cell transplant (HSCT).

Tue, 12/13/2022 - 16:21

Caregiver Experience in Pediatric Dialysis

Background and Objectives: Pediatric dialysis is thought to be burdensome on caregivers given their need to assume dual responsibilities of parental and medical management of their child's chronic illness. In this study, we seek to describe the experience of parental caregivers of children receiving chronic dialysis for end-stage kidney disease.

Tue, 12/13/2022 - 15:54

Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT

Backgrounds and Objectives: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain.

Sat, 06/11/2022 - 10:21

Medical Device Workarounds in Providing Care for Children With Medical Complexity in the Home

Objectives: Children with medical complexity (CMC) are commonly assisted by medical devices, which family caregivers are responsible for managing and troubleshooting in the home. Optimizing device use by maximizing the benefits and minimizing the complications is a critical goal for CMC but is relatively unexplored. In this study, we sought to identify and describe workarounds families have developed to optimize medical device use for their needs. Methods: We conducted 30 contextual inquiry interviews with families of CMC in homes.

Wed, 06/08/2022 - 14:46

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