Sage

Introduction: Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with medical providers. In order for providers to support caregivers, this study explores how caregivers make decisions regarding the medical care of their terminally ill children.

Many children and adolescents with type 1 diabetes (T1D) have difficulties reaching the national treatment goal for HbA1c (long-term blood sugar) which is associated with increased risk for complications. This makes it important to explore what patients and their caregivers describe important in coping with everyday life. The study has been conducted within a pediatric diabetes team in the south of Sweden. The aim was to explore how Experienced-Based Co-Design (EBCD) can be used to identify, test, and evaluate improvement efforts in order to support the family with a child with T1D.

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.

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.

Children with cerebral palsy (CP) require ongoing rehabilitation services to address complex health care needs. Attendance at appointments ensures continuity of care and improves health and well-being. The study’s aim was to gain insight into mothers’ perspectives of the factors associated with nonattendance. A qualitative descriptive design was conducted to identify barriers and recommendations for appointment keeping. Semi-structured interviews were conducted with 15 mothers of children with CP. Data underwent inductive qualitative analysis.

Parents of children with autism spectrum condition report increased stress and difficulties compared with parents of typically developing children. Our knowledge and understanding of how autism spectrum condition presents in autistic females is currently limited and parents of this population may experience challenges when raising their daughter. Given that mothers are often the main caregiver of a child with autism spectrum condition, they may have useful insights into the experiences of parenting a daughter with autism spectrum condition.