You are here

  1. Home
  2. Elsevier

Elsevier

Sleep disturbance and sleep insufficiency in primary caregivers and their children with cystic fibrosis

Background: Chronically ill children and their parents are at risk for sleep disorders and associated morbidity. Sleep disturbance prevalence and the relationships between parent and child sleep among children with CF are not well defined. Clarifying the presence and impact of sleep disturbances among pediatric CF patients and their parents could lead to improved health in this population. Methods: Cross-sectional study assessing parent-reported sleep in ninety-one CF patients (mean age 8.8 years; 53.8% female) and their primary caregivers.

Thu, 01/19/2023 - 17:25

Depression, anxiety and quality of life impairment in parents of children with functional lower urinary tract dysfunction

Background: Lower urinary tract dysfunction (LUTD) is a common clinical condition in children, frequently associated with emotional issues both among the patients and their families. The objective of the present study was to measure depressive and anxious symptoms and quality of life (QoL) in parents of LUTD patients.

Tue, 01/17/2023 - 16:42

Unmet needs in PKU and the disease impact on the day-to-day lives in Brazil: Results from a survey with 228 patients and their caregivers

Background: Accumulation of phenylalanine (Phe) due to deficiency in the enzyme phenylalanine hydroxylase (PAH), responsible for the conversion of Phe into tyrosine leads to Phenylketonuria (PKU), a rare autosomal recessive inborn error of metabolism with a mean prevalence of approximately 1:10,000 to 1:15,000 newborns. Physical, neurocognitive and psychiatric symptoms include neurodevelopmental disorder as intellectual disability and autism spectrum disorder.

Tue, 01/17/2023 - 16:25

Evaluation of the measurement properties of the Brazilian version of two quality-of-life questionnaires in food allergy - for children and their parents

Objective: To evaluate the psychometric properties of the Brazilian version of health-related quality-of-life questionnaires of children with food allergy and their parents.

Tue, 01/17/2023 - 10:05

Parenting in Serious Pediatric Illness: A Mixed Methods Study (GP768)

Objectives: Describe how parents prioritize parenting tasks and goals for their seriously ill and healthy children Illustrate how the process of trading-off one child's needs to meet those of another can contribute to parents' distress in serious pediatric illness.

Tue, 01/17/2023 - 09:06

Abuse and neglect of people with multiple sclerosis: A survey with the North American Research Committee on Multiple Sclerosis (NARCOMS)

Background: An estimated 100,000 Americans with advanced multiple sclerosis (MS) are at risk of mistreatment, yet we lack national prevalence data on abuse and neglect. Our objective was to determine the incidence and prevalence of caregiver abuse and neglect among U.S. adults with advanced MS.

Tue, 01/17/2023 - 08:56

Patient education for children with interstitial lung diseases and their caregivers: A pilot study

Objective: Patient education in children with rare chronic diseases like children's interstitial lung disease (chILD) remains a challenge.

Aims: To develop and evaluate a component-based educational program for individual counselling and to improve patients' and caregivers' self-efficacy and treatment satisfaction. Furthermore, to create chILD-specific educational material and assess physicians' satisfaction with the intervention as well as patients' health-related quality of life (HrQoL).

Mon, 01/16/2023 - 12:38

Factors Associated With the Use of U.S. Community–Based Palliative Care for Children With Life-Limiting or Life-Threatening Illnesses and Their Families: An Integrative Review

Context: As children with life-limiting illnesses (LLIs) and life-threatening illnesses (LTIs) live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families. Objectives: The purpose of this integrative review article is to explore factors that are associated with the use of CBPPC for U.S.

Thu, 01/12/2023 - 09:19

Page 1 of 34