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Perception of impact of Dravet syndrome on children and caregivers in multiple countries: looking beyond seizures

Aim: To assess the relevance and generalizability across countries of concepts of the impact of Dravet syndrome beyond seizures, as recognized by families.

Mon, 01/16/2023 - 13:42

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

An exploration of caregiver burden for children with nodding syndrome (lucluc) in Northern Uganda

Background: Caregivers of patients with chronic illnesses are often uncompensated for work that is physically demanding, time consuming and emotionally and economically draining. This is particularly true for caregivers of children with nodding syndrome, an emergent neurological disorder of unknown etiology in resource poor settings in Africa. We aimed to explore perceptions of caregivers regarding challenges that a typical caregiver faces when caring for a child with nodding syndrome.

Mon, 01/16/2023 - 13:36

"I feel so bad but have nothing to do." Exploring Ugandan caregivers' experiences of parenting a child with severe malaria and subsequent repeated uncomplicated malaria

Background: Severe malaria in children is often associated with long-term behavioural and cognitive problems. A sizeable minority of children go on to experience repeated malaria due to the high transmission and infection rates in the region. The purpose of this study was to explore caregivers' experiences of parenting a child with a history of severe malaria followed by repeated episodes of uncomplicated malaria in comparison to healthy community children.

Mon, 01/16/2023 - 13:34

Handle the Autism Spectrum Condition during Coronavirus (COVID-19) Stay at Home Period: Ten Tips for Helping Parents and Caregivers of Young Children

COVID-19 has become pandemic [[1]] and many government decrees have declared restrictive measures in order to prevent its wider spread. In this situation the handling of young children with special needs such as autism spectrum condition (ASC) could be challenging for families and caregivers. Shared Video Game and/or Internet Sessions with Parents Video games and the internet are extremely attractive for children with ASC but they could become an absorbent interest [[12]], especially in this period when children are called to stay at home.

Mon, 01/16/2023 - 13:30

Partnering to Prepare Families of Children Who Are Technology-Dependent For Home Care

In 2017, NewYork-Presbyterian Phyllis and David Komansky Children's Hospital/Weill Cornell Medical Center was the Partnership Award recipient, for its innovative "Simulation Discharge Program (SDP)," a new patient education initiative that helps family/caregivers of technologydependent children prepare for hospital discharge (see Figure 2).[...]of her own experience, Courtney understood how difficult a hospital stay can be for families, and she initially focused on providing support to families whose children were hospitalized.In addition to Courtney Nataraj and Dr.

Mon, 01/16/2023 - 13:28

Determinants of care efficiency in a group of Polish parents raising children with different developmental disorders: a cross-sectional study

Objectives: Care efficiency of family can be determined by many factors such as mental and physical health status of family members and their socioeconomic situation. Raising children with disabilities is a burdening and stressful situation for their caregivers. This article examines determinants of care efficiency in a group of Polish parents raising children with developmental disorders.

Mon, 01/16/2023 - 13:24

Examining the impact of COVID-19 in ethnically diverse families with young children with intellectual and developmental disabilities

Background: The COVID-19 pandemic introduced challenges to families with young children with developmental delays. Beyond the widespread concerns surrounding illness, loss of employment and social isolation, caregivers are responsible for overseeing their children's educational and therapeutic programmes at home often without the much needed support of professionals.

Mon, 01/16/2023 - 13:22

Bereavement support after the death of a child with cancer: implications for practice

The effects of bereavement are unique and support must be individually tailored. The role of the general practitioner (GP) in paediatric cancer palliative care is wide-ranging and challenging, yet little is known about offered bereavement support in this context. We carried out an in-depth secondary analysis of text relating to bereavement support from a semi-structured interview study exploring GPs’ and parents’ experiences.

Mon, 01/16/2023 - 13:20

Caregiver Decisional Conflict Before and After Consultation About Gastrostomy Tube Placement

Objectives: Families describe decision-making about gastrostomy tube (g-tube) placement as challenging. We measured caregiver decisional conflict before and after initial g-tube consultation to evaluate the potential benefit of a decision aid and feasibility in testing it.;

Mon, 01/16/2023 - 13:18

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