Journal article

Background: Multiple family groups (MFG) have shown to have promising results for children with behavioral difficulties. The 4Rs and 2Ss is a curriculum-based multiple family group model for families of children with disruptive behavior disorders, who live in poverty-impacted communities. Methods: This study aimed to explore group processes and caregiver perceptions of the benefits of participating in the 4Rs and 2Ss MFG.

Celiac disease (CD) is an autoimmune disorder triggered by the ingestion of gluten and affects approximately 1% of the global population. Currently, the only treatment available is lifelong strict adherence to a gluten-free diet (GFD). Chronic diseases such as CD affect patients and their family members’ quality of life (QoL); particularly parents and caregivers who play an essential role in the child’s care and treatment.

Background: Food allergy is a substantial health burden, which disproportionately affects children. Among children with food allergy, as many as 70% have multiple food allergies. Whereas the overall burden of food allergy on quality of life has been described, little is known about the burden of individual allergens.

Importance: There is increasing literature on the role of health literacy in asthma outcomes. Despite less than half of Americans having proficient health literacy, health literacy is an essential component in providing quality medical care. Observations: Most of the literature on the impact of health literacy on asthma outcomes is from the adult asthmatic population, where lower health literacy is associated with poorer asthma outcomes, including decreased quality of life, worse asthma control, and more Emergency Department visits for asthma.

Rates of engagement in mental health care are disproportionately low for low-income, racial/ethnic minority youth. We will present novel research on caregiver-reported challenges to engagement in care, and the results of research on strategies supporting caregivers to overcome barriers to engagement.

Background: Parents caring for children with complex and long‐term conditions at home take on responsibility for technical health‐care procedures that may cause their child distress. Little evidence exists about parents’ experience of this specific aspect of their caring role.

Aims: To explore and understand parents’ experiences of administering distressing health‐care procedures as part of caring for their child at home.

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.

This quality improvement project aimed to identify barriers and opportunities for successful transition from pediatric to adult health care for a clinic sample of youth with spina bifida. Pediatric patients (N = 16) with spina bifida between the ages of 14 and 21 years and a family member were recruited from the Spina Bifida Clinic at a large regional medical center to participate in a face-to-face semi-structured interview.