Children

Introduction: 169 U.S. health systems now engage in OpenNotes: a movement to share clinical notes with patients. Few studies have focused on releasing notes during hospitalization, pediatrics, or parents/caregiver perspectives.

Objectives: Administration of oral corticosteroids at the onset of an upper respiratory tract infection (URTI) can be effective in the management of acute asthma exacerbations in children. This study was designed to identify barriers to parent-initiated implementation of clinical practice guideline-recommended use of oral corticosteroids for prophylaxis against severe asthma exacerbations in children.

An initial problem frequently found in children born with cleft palate is difficulty feeding. This problem can be magnified in rural areas where healthcare resources are limited. A 29-item questionnaire was developed and administered to 24 families whose children were born with a cleft palate. Many parents experienced difficulties in both instruction and in feeding their children. It was necessary for them to seek information and assistance from different sources.

Objectives & Hypothesis: Children with home mechanical ventilation (HMV) require skilled care by trained caregivers, and their families feel the impacts of ubiquitous home nursing shortages. It is unknown which factors determine allocation; no standards for private duty nursing intensity exist. We sought to characterize provider experiences with and opinions on home nursing for children with HMV, hypothesizing providers would describe frequent home nursing gaps across clinical scenarios.

Background: Many rare diseases of childhood are life-threatening and chronically debilitating, so living with a rare disease is an on-going challenge for patients and their families. MPS is one of a range of rare inherited metabolic disorders (IMDs) that come under category 3 of life-limiting conditions, where there is no curative treatment available at present.

Objective: To assess the lived experience of parents whose child has suffered a stroke.

Various care approaches are provided to support families with newly diagnosed children in their task of diabetes management. We conducted qualitative interviews with 36 parents of 23 children, newly diagnosed with type 1 diabetes. The parents were recruited from participants in a Randomized Controlled Trial (RCT) evaluating hospital-based care (HBC) and hospital-based home care (HBHC), to explore their experiences of two different approaches to diabetes care. The HBC was considered as being safe but not family- or diabetes-oriented.

An understanding of health related quality of life (HRQoL) in children and families affected by methylmalonic acidemia (MMA) is important in planning counseling and therapeutic intervention. Liver transplantation (LT) is used as a treatment for MMA; however, its risks and benefits continue to be investigated. The purpose of this study was twofold: (1) to measure HRQoL in children and families affected by MMA using the Pediatric Quality of Life Inventory (PedsQL™) parent version, and (2) to assess the impact of LT on HRQoL by comparing LT and non-LT patient scores and free responses.

Objectives: Importance of HSB is increasing being recognized in understanding patient compliance, adequacy of followup, and seeking of alternative therapies (AT), which impact glycemic control. We looked at HSB of T1D caregivers.

Methods: 56 families: Child's T1D duration >1 y, were interviewed: 49 coming to a private clinic, 7 in government hospitals. SES was low in 20, upper/middle ("non-poor") in 36.