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Nurse-led brief sleep education intervention aimed at parents of school-aged children with neurodevelopmental and mental health disorders: Results from a pilot 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

Sun, 01/01/2023 - 14:41

Our life at home: Photos from families inform discharge planning for medically complex children

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.

Sun, 01/01/2023 - 14:22

Risk factors underlying depressive symptoms among parents/primary care providers of kids with autism spectrum disorder: A study from Muscat, Oman

Aim: To explore the prevalence and correlates of depressive symptoms among parents/primary care providers of children with autism spectrum disorder (ASD). Design and Methods: A cross-sectional analytical study was conducted among a systematic random sample of parents/caregivers of children with diagnosis of ASD in Muscat, Oman.

Wed, 12/28/2022 - 23:26

Impaired Health-Related Quality of Life in Children and Families Affected by Methylmalonic Acidemia

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.

Wed, 12/21/2022 - 11:13

Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18

The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method.

Wed, 12/21/2022 - 10:14

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