Jour

Objective: The quality of life (QOL) of caregivers of children with asthma may be related to children's responses to asthma management.

Aim: To evaluate change in QOL over time of caregivers of children with asthma through guideline-based management.

The timing of epilepsy surgery is complex, and there is not a structured pathway to help families decide whether to continue medical management or pursue surgical treatment. We surveyed caregivers of pediatric epilepsy surgery patients. Fifty-eight respondents answered the majority of questions. Thirty caregivers wished their child had undergone epilepsy surgery earlier compared with twenty who felt surgery was done at the appropriate time, and eight were unsure.

Background: The importance of engaging parents in health research as co‐researchers is gaining growing recognition. While a number of benefits of involving parents as co‐researchers have been proposed, guidelines on exactly how effective engagement can be achieved are lacking. The objectives of this scoping review were to (i) synthesize current evidence on engaging parents as co‐researchers in health research; (ii) identify the potential benefits and challenges of engaging parent co‐researchers; and (iii) identify gaps in the literature.

This study aimed to identify patterns of family management and its predictors based on the perception of the care experience from 339 caregivers of Chinese children with chronic kidney disease in multiple medical centers. Each caregiver completed the Family Management Measure questionnaires. Cluster analysis generated five patterns: effective (12.7%), impaired (14.5%), burdensome (21.2%), disorganized (27.7%), and concerning (23.9%). Multinomial logistic regression indicated that child's age, disease duration, family income, and paternal employment predicted cluster membership.

Transition from pediatric to adult health care is a key milestone for children and young people (CYP) with chronic conditions. Family management (FM) and self-management are two important concepts during the process. This study aimed to explore the relationships between FM, self-management and transition readiness, and quality of life (QoL), and identify the potential CYP or family factors influencing the relationships. Data about FM, self-management and transition readiness, QoL, and various contextual factors were collected from 268 caregiver-child pairs.

Objectives: To investigate the burden of systemic juvenile idiopathic arthritis (SJIA) on health-related quality of life (HRQOL) and resource use of patients and caregivers (families) on biologic therapy.

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.