Jour

Background: Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to characterize the sociodemographic and psychosocial profile of WHS caregivers and analyze how these variables impact their quality of life (QoL) and well-being.

Objective: The death of a child from cancer is an intense and life-changing loss for a parent. Guided by the principles of patient- and family-centered care, hospital-based caregivers developed a program to provide bereavement support for parents through phone calls and mailings.

Empathy is considered a positive aspect of caregiving, although in certain circumstances, being empathic might increase the burden of caregivers. The current study assessed the associations between empathy, parental efficacy, and family burden among parents of children who were hospitalized in a psychiatric unit. Specifically, we examined whether the association between empathy and family burden was moderated by the parents' sense of self‐efficacy.

Background: The early identification and diagnosis of autism is critical to ensure access to appropriate early intervention and support. Few studies have examined the association between potentially modifiable characteristics of the service system and timelier diagnosis. Methods: An online survey was conducted to examine parental experiences of service pathways to an autism diagnosis for their child, and to identify child, family, and service level characteristics that predict the age and timeliness of diagnosis.

Advances in neonatal care have led to increased survival of infants with complex medical needs and technology dependence. Transition of the ventilator-dependent infant from hospital to home is a complex process that requires extensive coordination between the medical team and family. Home caregivers must be prepared to provide routine care for the ventilator-dependent child and respond to life-threatening emergencies. Families should be counseled on the need for home nursing, medical equipment and an adequate home environment to ensure a safe transition to home.

Background and purpose: Parents of children with obsessive-compulsive disorder (OCD) report significant emotional and socio-occupational impacts. There is, however, currently insufficient support for these parents. This study examined a mindfulness-based intervention for parents of OCD-affected children, investigating its feasibility and impact on parental ability to tolerate their child's OCD-related distress, in addition to exploring potential indirect effects.

Background: Costs of dialysis reported in countries where dialysis is government-funded are often those incurred by the state, and only a few take into account the financial burden to the family of the index patient.