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Parents/*psychology

Medical care experiences of children with autism and their parents: A scoping review

Children with autism spectrum disorder (ASD) and their families may benefit from the provision of additional supports in health care settings, particularly when preparing for and attending medical appointments. This review examined literature that describes experiences in medical care settings from the perspective of patients under age 18 with ASD and their caregivers. A scoping review was conducted to examine the experiences of children with ASD and their families in medical care settings. Twenty-nine studies meeting inclusion criteria were identified and reviewed.

Tue, 12/13/2022 - 14:04

Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment

Background: Pediatric obsessive-compulsive disorder (OCD) is associated with deleterious familial effects; caregivers are often enmeshed in the disorder and can experience considerable burden and decreased quality of life (QoL). Consequently, this study examined burden and QoL in caregivers of youth with OCD enrolled in an intensive outpatient or partial hospitalization program.

Tue, 12/13/2022 - 13:11

Caring for a Child with Phenylketonuria: Parental Experiences from a Eurasian Country

Objectives: Phenylketonuria (PKU) and mild hyperphenylalaninemia (HPA) are characterized by increased blood phenylalanine concentrations varying from mild to severe. Management of PKU was reported to be time consuming and burdensome for caregivers. This study intended to explore the experiences of families caring for a child with PKU/HPA in a country with a high PKU rate.

Tue, 12/13/2022 - 11:13

Mediating Effects of Social Support on Quality of Life for Parents of Adults with Autism

The aim of this study was to examine the mediating effect of formal and informal social support on the relationship of caregiver burden and quality of life (QOL), using a sample of 320 parents (aged 50 or older) of adult children with autism spectrum disorder (ASD). Multiple linear regression and mediation analyses indicated that caregiver burden had a negative impact on QOL and that informal social support partially mediated the relationship between caregiver burden and parents' QOL. Formal social support did not mediate the relationship between caregiver burden and QOL.

Mon, 01/21/2019 - 14:45

Cancer Communication on Social Media: Examining How Cancer Caregivers Use Facebook for Cancer-Related Communication

Background: Americans are increasingly using social media (such as Facebook, YouTube, and Twitter) for health-related communication. Much of the previous research on social media and health communication has focused on Facebook groups related to a specific disease or Facebook pages related to an advocacy organization.

Wed, 07/04/2018 - 16:31