Journal article

A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently unique, collectively, these conditions are quite common. Many rare diseases are diagnosed during childhood, and therefore parents become primary caregivers in addition to their parental role. Despite the prevalence of rare diseases among children, there has been little research focused on parents' experiences of navigating the healthcare system, a gap we begin to address in this study.

Purpose: To test the effects of a single-session parent sleep educational intervention, led by a pediatric nurse, on sleep in a group of school-aged children attending a National Health Service mental health clinic in Murcia, Spain. Design and Methods: Parents/caregivers of 26 children (mean age = 8.58 years; standard deviation = 0.58; 80.8% male) with neurodevelopmental or mental health disorders (84.6% pervasive developmental disorder), and with a suspicion of a behavioral sleep problem, participated in a 45-min group educational session about healt

Background: Infants with medical complexity are increasingly cared for at home, creating unique challenges for their caregivers. The sickest of these are those with chronic critical illness (CCI). These infants’ medical fragility and resource‐intensive needs puts them at increased risk for suboptimal transitions from hospital‐ to home‐based care. It is unclear whether, and if so, to what extent clinicians gather and use knowledge of a family's home context during discharge planning.

Aim: This qualitative study examined the lived experience of associative stigma for parents of adolescents at clinical high risk for psychosis. A central goal was to empower families to tell their stories and to use the themes that emerge from this narrative data to make recommendations that might support families coping with a loved one being diagnosed with risk for psychosis. Methods: Twelve parents of adolescents diagnosed with the clinical high risk for psychosis syndrome were interviewed using a semi‐structured approach.

Objective: This study investigated a quality indicator for children's mental health, caregiver attendance in youth psychotherapy sessions, within a system-driven implementation of multiple evidence-based practices (EBPs) in children's community mental health services. Method: Administrative claims from nine fiscal years were analyzed to characterize and predict caregiver attendance. Data included characteristics of therapists ( n = 8,626), youth clients ( n = 134,368), sessions (e.g., individual, family), and the EBP delivered.

Background: The study aimed to make comparison between the resilience, life satisfaction, care burden and social support of mothers with a child with acute lymphoblastic leukaemia (ALL) and those with a healthy child. Methods: The study was carried out using the comparative and descriptive methods, and the study group included mothers with ALL children hospitalised in the Paediatric Haematology Clinic of a university hospital (n = 51) and those with healthy children who applied to a family health centre (n = 53).