English

Home mechanical ventilation is an alternative to institutional management for some children with chronic or degenerative respiratory and neuromuscular disorders. Over the past 20 years, Children's Hospital of Philadelphia has enhanced its Home Care Home Ventilator Program, designed to transition hospitalized children requiring long-term mechanical ventilation safely home. Program goals include supporting patient safety, medical stability, and caregiver competence while promoting quality of life.

Parents of children with autism are faced with higher risks of unemployment, divorce, and poorer mental health than parents of children with other disorders. Such parenting stress can be further exacerbated by cultural and environmental factors such as the more conservative and collectivistic Asian values. Therefore, this review identifies and synthesizes literature on the parenting experiences and needs of Asian primary caregivers of children with autism using a critical interpretive method. A qualitative meta-summary was conducted.

The expectations and role of families in the care of children with autism spectrum disorder are increasingly important. Nonetheless, no study has thus far explored the perspectives of siblings about the care received by a brother or sister with this disorder. The objective of this study was to fill this gap in the literature. This multicentre qualitative study took place in France, where we conducted semi-structured interviews with adolescents who were older siblings of children receiving care in a day hospital for an autism spectrum disorder.

Background: We sought to understand the experiences of parents/caregivers of children with inherited metabolic diseases (IMD) in order to inform strategies for supporting patients and their families. We investigated their experiences regarding the management of disease, its impact on child and family life, and interactions with the health care system.

Aims: To evaluate predictors of healthcare satisfaction for parents whose children received hospital-based healthcare services at the Children's hospital at Landspitali University Hospital.

Methods: In this cross-sectional study, data on perceived family support, family quality of life, expressive family functioning, coping strategies and healthcare satisfaction were collected from 159 mothers and 60 fathers (N = 177 families) of children and adolescents from 2011 to 2012.

Family relationships are related to the cohesion between family members and their interaction and the ability to solve everyday problems and crisis situations. The family is influenced by internal and external factors that affect relationships between family members. These factors also affect intimate life of partners. The family naturally faces a developmental and situational crisis. These crises are milestones that can impact the future life of the family.

The aim was to evaluate the oral health care of children/adolescents with Cerebral Palsy (CP) according to severity through the perceptions of parents/caregivers. A case series study was conducted at health services in the state of Pernambuco, Brazil with 94 mothers/caregivers of subjects with CP from 5 and 18 years old. Sociodemographic factors, oral health care and use of dental services (DS) were evaluated. The Gross Motor Function Classification System showed 67% with severe motor impairment.

In pediatric settings, a valid and reliable assessment of negative and positive dimensions of caregiving can inform intervention processes and improve parent–child adaptation outcomes. While caregiving is a normative component of parenting, the experience can be quantitatively and/or qualitatively different for parents of children with a chronic health condition. The aim of this study was to systematically examine the psychometric properties of the "Revised Burden Measure" in a sample of parents of children with and without chronic health conditions.

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.