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Impact of childhood Dravet syndrome on care givers of patients with DS, a major impact on mothers

Background: The aim of this study was to understand the impact of Dravet syndrome (DS) on patients with Dravet syndrome and their families, with a focus on the social and economic impact on both mothers and fathers.

Mon, 01/16/2023 - 13:45

Psychosocial issues in erythropoietic protoporphyria - the perspective of parents, children, and young adults: A qualitative study

Erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) are rare photodermatoses, generally presenting in childhood with severe and painful phototoxicity. EPP has been reported to negatively affect quality of life (QoL), but there is limited information on the psychosocial issues faced by patients and families. To address this, an online focus group study was conducted to explore the perspective of parents of children with EPP, and young adults and children with EPP.

Mon, 01/16/2023 - 13:38

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

Delay in pediatric epilepsy surgery: A caregiver's perspective

The timing of epilepsy surgery is complex, and there is not a structured pathway to help families decide whether to continue medical management or pursue surgical treatment. We surveyed caregivers of pediatric epilepsy surgery patients. Fifty-eight respondents answered the majority of questions. Thirty caregivers wished their child had undergone epilepsy surgery earlier compared with twenty who felt surgery was done at the appropriate time, and eight were unsure.

Thu, 01/05/2023 - 17:05

Augmented naturalistic developmental behavioral intervention for toddlers with autism spectrum disorder: A community pilot study

In the United States, all families with children under the age of 3 years with disabilities or delays in development are eligible to receive public Early Intervention (EI) services. Many researchers are investigating Naturalistic Developmental Behavioral Interventions (NDBI), which have shown positive outcomes for young children with ASD. However, NDBIs have been mostly developed and implemented in university laboratories, and their effectiveness when delivered in community settings is not well understood.

Wed, 12/21/2022 - 10:18