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The Association between Poverty and Family Financial Challenges of Caring for Medically Complex Children

More than 500,000 children in the United States live with medical complexity. Their families assume responsibility for care and are directly affected by the associated financial costs. In this retrospective, nonexperimental study of children with medical complexity (CMC) and their families, greater than 50% of families experienced financial challenges and left employment to care for CMC. Poverty level was significantly related to financial challenges.

Tue, 01/17/2023 - 09:09

Parenting in Serious Pediatric Illness: A Mixed Methods Study (GP768)

Objectives: Describe how parents prioritize parenting tasks and goals for their seriously ill and healthy children Illustrate how the process of trading-off one child's needs to meet those of another can contribute to parents' distress in serious pediatric illness.

Tue, 01/17/2023 - 09:06

The effectiveness of parental distraction during children's acute pain: The moderating effect of socioeconomic status

Background: Parental responses to children's pain shape how children interpret and cope with pain symptoms through parental modelling and operant conditioning. Evidence suggests that parental distraction is effective in reducing children's acute pain responses, but findings are inconsistent across pain tolerance, intensity and unpleasantness, and are limited to samples of primarily middle and upper-middle class families.

Tue, 01/17/2023 - 09:02

Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

Background: Although research in this area remains sparse, raising a child with some genetic disorders has been shown to adversely impact maternal health and family quality of life. The aim of this study was to investigate such impacts in families with a child with the CDKL5 disorder, a newly recognised genetic disorder causing severe neurodevelopmental impairments and refractory epilepsy.

Tue, 01/17/2023 - 08:59

Abuse and neglect of people with multiple sclerosis: A survey with the North American Research Committee on Multiple Sclerosis (NARCOMS)

Background: An estimated 100,000 Americans with advanced multiple sclerosis (MS) are at risk of mistreatment, yet we lack national prevalence data on abuse and neglect. Our objective was to determine the incidence and prevalence of caregiver abuse and neglect among U.S. adults with advanced MS.

Tue, 01/17/2023 - 08:56

Rewards of parenting children and adolescents with spinal cord injuries

Study Design: Mixed-method study.; Objectives: Describe caregiver perspectives on the rewards of parenting youth with spinal cord injury (SCI) and explore the relationships between rewards and child/caregiver demographic characteristics and child psychosocial outcomes.; Setting: Data collection occurred at three pediatric specialty hospitals within a single hospital system in the United States. 

Tue, 01/17/2023 - 08:54

The Effect of Barkley's family-oriented program on the burden of care on families of children with attention deficit-hyperactive disorder

Background: Attention deficit-hyperactive disorder (ADHD) is the most common behavioral disorders during childhood whose treatment is greatly dependent on families; therefore, families of such children should improve their relation with them so that they could enjoy their lives. Hence, this study was conducted to evaluate the effect of Barkley's family-oriented program on the burden of care on such families.

Tue, 01/17/2023 - 08:51

Pediatric Hearing Aid Management: Parent-Reported Needs for Learning Support

Objectives: The aim of this study was to investigate parent learning and support needs related to hearing aid management for young children, and factors that influence parent-reported hours of hearing aid use.

Tue, 01/17/2023 - 08:49

Medical alert card: a valuable tool in the management of Hirschsprung's-associated enterocolitis from parental perspective

Purpose: Awareness of Hirschsprung's-associated enterocolitis (HAEC) among patient's families and medical staff can lead to prompt recognition of symptoms and earlier implementation of management. We designed an HAEC medical alert card to raise awareness of HAEC among medical staff and carers of children with Hirschsprung's disease (HD).

Tue, 01/17/2023 - 08:46

Longitudinal Trajectories of Caregiver Distress and Family Functioning After Community-Acquired Pediatric Septic Shock

Objectives: To identify trajectories and correlates of caregiver distress and family functioning in families of children who survived community-acquired septic shock. We hypothesized that: 1) a substantial subset of families would demonstrate trajectories of persistent elevated caregiver distress and impaired family functioning 12 months after hospitalization and 2) sociodemographic and clinical risk factors would be associated with trajectories of persistent distress and family dysfunction. 

Design: Prospective cohort.

Mon, 01/16/2023 - 14:09

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