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Barriers and Facilitators to Caring for a Child with Cerebral Palsy in Rural Communities of the Western Cape, South Africa

Family members of children with disabilities have become more involved in their children's care and have adopted the role of primary caregiver. Due to the varying degrees of the condition, children with cerebral palsy (CP) often require greater involvement from their caregivers. Fifteen caregivers for children with CP residing in rural communities of the Western Cape, South Africa, were interviewed to explore the barriers and facilitators that they encountered.

Wed, 01/11/2023 - 12:46

The role of hospice in the transition from hospital to home for technology-dependent children--A qualitative study

Aims and objectives: To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom.

Background: In recent years, increasing numbers of children-dependent on long term assisted ventilation have been noted. Meeting the complex physical, emotional and social needs of the child and family is challenging. Many of these children spend extended periods in hospital even when medically stable.

Wed, 01/11/2023 - 12:43

The influence of patient, caregiver, and family factors on symptoms of anxiety and depression in children and adolescents with intractable epilepsy

Objective: The objective was to evaluate the association of caregiver and family factors with symptoms of anxiety and depression in children and adolescents with medically refractory localization-related epilepsy (i.e., failed at least two epilepsy medications).

Wed, 01/11/2023 - 12:40

Severity of disease and quality of life in parents of children with alopecia areata, totalis, and universalis: A prospective, cross-sectional study

Background: Caregiver-oriented quality of life (QoL) research in alopecia areata is limited. No study has used a parent-tailored survey to examine the relationship between QoL and severity of alopecia as measured by Severity of Alopecia Tool (SALT) scores.

Objectives: This is a prospective study that describes QoL in parents of pediatric patients with all subtypes of alopecia areata and investigates the relationship between QoL and severity of disease, duration of disease, and age of patients.

Wed, 01/11/2023 - 12:38

Telehealth Interventions for Improving Self-Management in Patients With Hemophilia: Scoping Review of Clinical Studies

Background: The introduction of home therapy for hemophilia has empowered patients and their families to manage the disease more independently. However, self-management of hemophilia is demanding and complex.

Wed, 01/11/2023 - 12:34

Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy

Objective: This study examines theoretical covariates of health-related quality of life (HRQL) in parents of pediatric brain tumor survivors (PBTS) following completion of tumor-directed therapy.; Methods: Fifty PBTS (ages 6-16) completed measures of neurocognitive functioning and their parents completed measures of family, survivor, and parent functioning.

Wed, 01/11/2023 - 12:30

Health care and societal costs of the management of children and adolescents with attention-deficit/hyperactivity disorder in Spain: a descriptive analysis

Background: Attention-deficit/hyperactivity disorder (ADHD) is a common neurodevelopmental condition in childhood (5.3% to 7.1% worldwide prevalence), with substantial overall financial burden to children/adolescents, their families, and society.

Wed, 01/11/2023 - 12:28

Long-Term Pain and Recovery After Major Pediatric Surgery: A Qualitative Study With Teens, Parents, and Perioperative Care Providers

Research developing targeted treatment focused on coping with children's long-term pain after surgery is needed because of the high prevalence of chronic pain after surgery. This qualitative study aimed to: 1) understand the child's and family's experiences of pain over the course of their surgical experience, and 2) gather stakeholder input regarding potential barriers and facilitators of perioperative intervention delivery. Fifteen children ages 10 to 18 years who underwent recent major surgery, their primary caregivers, and 17 perioperative health care providers were interviewed.

Wed, 01/11/2023 - 12:24

Meaning making and religious engagement among survivors of childhood brain tumors and their caregivers

Purpose: To describe how adolescent and young adult survivors and their mother-caregivers ascribe meaning to their postbrain tumor survivorship experience, with a focus on sense making and benefit findings and intersections with religious engagement.

Participants & Setting: Adolescent and young adult survivors of childhood brain tumors and their families, living in their community settings.

Wed, 01/11/2023 - 12:21

"You Are Not Alone": Advice Giving for Parents of Children Living with Complex Chronic Conditions

Parental advice giving serves as an important form of informational support for parents of children living with complex chronic conditions (CCCs). These messages can provide backchannel insights into social challenges, best practices, and may offer different forms of experiential wisdom garnered from their own parental caregiving experiences. Contributing to the naturalistic, health-context investigations of advice messages, we interviewed 35 parents who discussed their experiences with parenting their medically complex child.

Wed, 01/11/2023 - 12:19

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