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American Academy of Pediatrics

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

Family Caregiver Partnerships in Palliative Care Research Design and Implementation

The article discusses the effectiveness of family caregiver partnerships in the design and implementation of pediatric palliative care (PPC) research. Also cited are the importance of the perspectives of family caregivers, clinicians and researchers in improving research, and the principles of patient- and family-centered research like honesty, cultural competency, and transparency.

Wed, 05/25/2022 - 10:54

Children With Special Health Care Needs and Forgone Family Employment

BACKGROUND: Family income is known to affect child health, but this relationship can be bidirectional. We sought to characterize this relationship by quantifying forgone family employment (FFE) due to a child's health condition in families of children with special health care needs (CSHCN) with updated figures. METHODS: We conducted a secondary data analysis from the 2016-2017 National Survey of Children's Health. CSHCN with previously employed caregivers were included (N = 14 050).

Fri, 01/28/2022 - 15:30