Journal article

Dyadic coping strategies may play a pivotal role in relationship satisfaction and explain why some couples adapt positively to the challenges associated with raising a child with ASD and others do not. Survey data from 127 caregivers of a child with ASD were used in generalized estimating equation analyses to investigate the factors associated with relationship satisfaction, including socio-demographics, parenting stress and dyadic coping.

Objective: This study sought to understand caregivers' (CGs') responses to early cleft lip/palate care for their infants.

Aims: Tuberous sclerosis complex (TSC) is a multi-organ autosomal-dominant, genetic disorder with incomplete penetrance. The multiple manifestations of TSC and impacts to numerous organ systems represent significant disease, healthcare, and treatment burden. The economic and employment burden of the disease on individuals and their families is poorly understood. This study assessed the cost of illness and work and school productivity burden associated with TSC in a cross-sectional web-survey sample.

Evidence suggests that children with fetal alcohol spectrum disorder (FASD) experience challenges across many areas of their daily lives and often require interprofessional supports. Recent studies have emphasized the need for an integrated system of care for children with FASD, incorporating medical, allied health, and education services, to facilitate open communication and support for the complex needs that many children experience.

Aim: The care of a child with a life-limiting condition proves an emotional, physical and financial strain on the family that provides care for their child. Respite care is one way which allows carers to receive some relief and support in the context of this burden of care. The provision of and the requirements for respite in this context is poorly understood. This survey aims to describe the types of respite care families receive, the respite that they would ideally receive and the barriers that prevent this.

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.

Aims: The aims were to: (i) examine perceptions of family‐centred care of parents of children with cystic fibrosis and healthcare professionals who care for them; (ii) test design and tools in a regional population.

Design: Quantitative pilot study of existing questionnaire.

Background: The Zika virus outbreak in Brazil (2015-2016) affected thousands of children who were born with Congenital Zika Syndrome (CZS). Families play an important role in their care of children with complex needs, yet their knowledge, experience and skills are rarely harnessed in existing interventions to best support these families.; Objective: This study explores the use of mothers as facilitators for a community-based group intervention for children with CZS and their caregivers in Brazil.

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.

Rationale: In 2016, the American Thoracic Society released clinical practice guidelines for pediatric chronic home invasive ventilation pertaining to discharge practices and subsequent management for patients with invasive ventilation using a tracheostomy. It is not known to what extent current U.S. practices adhere to these recommendations. Objectives: Hospital discharge practices and home health services are not standardized for children with invasive home mechanical ventilation (HMV). We assessed discharge practices for U.S. children with HMV.