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Family Perspectives on Telemedicine for Pediatric Subspecialty Care

Background: Children often have difficulty accessing subspecialty care, and telemedicine may improve access to subspecialty care, but information is lacking on how best to implement telemedicine programs to maximize acceptance and, ultimately, maximize impact for patients and their families.

Tue, 01/10/2023 - 17:11

Take A Breath: study protocol for a randomized controlled trial of an online group intervention to reduce traumatic stress in parents of children with a life threatening illness or injury

Background: A substantial proportion of parents whose child is diagnosed with a life-threatening illness, experience high levels of distress that can lead to long-term difficulties in mental health, family functioning and child adjustment. This study evaluates the efficacy of an Acceptance Commitment Therapy-based group intervention designed to reduce distress symptoms in these parents. The program is delivered using videoconferencing to overcome factors that prevent participation in traditional face-to-face therapy.

Tue, 01/10/2023 - 17:08

Relationship Between Early Social-Emotional Behavior and Autism Spectrum Disorder: A High-Risk Sibling Study

Social-emotional behavior in autism spectrum disorder (ASD) was examined among high-risk (HR; siblings of children diagnosed with ASD) and low-risk (LR; no family history of ASD) toddlers. Caregivers completed the Infant-Toddler Social Emotional Assessment (ITSEA) at 18 months, and blind diagnostic assessment for ASD was conducted at 36 months.

Tue, 01/10/2023 - 17:03

Family Resilience From the Perspective of Caregivers of Youth With Sickle Cell Disease

Families coping with sickle cell disease (SCD) often face heightened psychosocial risk factors, and research in pediatric SCD has often focused more on this area than resiliency factors. The aim of this study was to gain a better understanding of family resiliency in SCD based on caregiver perspectives. A secondary qualitative analysis was conducted with data from a mixed-methods study of caregivers of youth with SCD (n=22).

Tue, 01/10/2023 - 16:59

The Lived Experience of Parents of Children with Special Healthcare Needs on Public and Private Insurance: A Phenomenological Study

Due to recent advances in medical technology, the number of children with special healthcare needs (CSHCN) is steadily growing in the United States. CSHCN comprise more than 40% of overall healthcare costs nationwide, even though this group is only comprised of 16% of the U.S. child population. There are significant differences between private and public health plans in terms of cost, adequacy, and parent satisfaction. As an added benefit, some public and private health insurance plans offer nursing care coordination (or nursing case management) services.

Tue, 01/10/2023 - 16:56

Perceived discrimination and self-esteem among family caregivers of children with autism spectrum disorders (ASD) and children with intellectual disabilities (ID) in Spain: The mediational role of affiliate stigma and social support

Background: People with autism spectrum disorders (ASD) and people with intellectual disabilities (ID) are stigmatized, and therefore discriminated against worldwide and, on many occasions, this stigma and discrimination are expanded to include their family caregivers. The main objective of this research was to examine the consequences of perceived discrimination on family caregivers of children with ASD and children with ID.

Tue, 01/10/2023 - 16:54

Caregiver and family quality of life for children with fetal alcohol spectrum disorder

Background: Fetal alcohol spectrum disorder (FASD) is a common neurodevelopmental condition. Given that individuals with FASD can experience lifelong challenges, one field of research that could be applicable is the paediatric chronic health literature.

Aims: The aim of the current study was to investigate the utility of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module, designed to measure the impact of paediatric chronic health conditions on caregivers and families.

Tue, 01/10/2023 - 16:50

Direct and indirect costs of families with a child with acute lymphoblastic leukaemia in an academic hospital in China: a cross-sectional survey

Objectives: To estimate the direct and indirect costs in families with a child with acute lymphoblastic leukaemia (ALL) in China.

Tue, 01/10/2023 - 16:48

Determinants of health-related quality of life proxy rating disagreement between caregivers of children with cancer

Purpose: Proxy reports of health-related quality of life (HRQoL) are commonly used in pediatric oncology. However, it is not known if caregivers' reports differ. This study therefore aims to compare paternal and maternal proxy reports, and explore determinants of couple disagreement (sociodemographic and medical characteristics, and parental QoL and distress).

Tue, 01/10/2023 - 16:45

Pediatric Traumatic Brain Injury: Families and Healthcare Team Interaction Trajectories During Acute Hospitalization

Purpose: To identify common or unique family-healthcare team interactions during acute hospitalization for pediatric patients with a traumatic brain injury (TBI) using a life course trajectory (LCT) theoretical approach.

Tue, 01/10/2023 - 16:41

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