Jour

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.

Background: Many rare diseases of childhood are life-threatening and chronically debilitating, so living with a rare disease is an on-going challenge for patients and their families. MPS is one of a range of rare inherited metabolic disorders (IMDs) that come under category 3 of life-limiting conditions, where there is no curative treatment available at present.

This integrative literature review examines the facilitators and barriers to open and clear parent-child communication in the context of childhood cancer (for this literature review, child refers to ages 0 to 19 years). The Resilience in Illness Model (Haase et al., 2017) was employed to organize the findings and link to resilience outcomes among children with cancer. In a search of three international databases (PubMed, CINAHL, and PsycINFO), 18 studies met inclusion criteria and were selected for review.

PURPOSE: To examine the family communication experience of Korean adolescents with cancer and their parents, including how adolescents and their parents verbally share feelings and concerns related to the adolescent's cancer diagnosis with one another, and how emotional communication affects parent-adolescent relationships and the family's coping abilities.

Objective: To assess the lived experience of parents whose child has suffered a stroke.

Objective: To know the experiences of family members of children with cystic fibrosis under the light of the theory of Callista Roy.

Method: Qualitative research that used the adaptation theoretical framework of Callista Roy for inductive content analysis. Fifteen family members, in a university hospital, between 23 and 63 years old, participated in the study, from September to October 2018.

Background: Autism spectrum disorders (ASDs) are characterised by impairments in communication and reciprocal social interaction. These impairments can impact on relationships with family members, augment stress and frustration, and contribute to behaviours that can be described as challenging. Family members of individuals with ASD can experience high rates of carer stress and burden, and poor parental efficacy.