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Patient education for children with interstitial lung diseases and their caregivers: A pilot study

Objective: Patient education in children with rare chronic diseases like children's interstitial lung disease (chILD) remains a challenge.

Aims: To develop and evaluate a component-based educational program for individual counselling and to improve patients' and caregivers' self-efficacy and treatment satisfaction. Furthermore, to create chILD-specific educational material and assess physicians' satisfaction with the intervention as well as patients' health-related quality of life (HrQoL).

Mon, 01/16/2023 - 12:38

Outcomes of an enhancement study with additional psychoeducational sessions for healthy siblings of a child with cancer during inpatient family‐oriented rehabilitation

Objective: Chronic illness of a child puts healthy children of the family at risk of distress. Previous studies have demonstrated that healthy children's psychological symptoms can be reduced when the child knows more about the disease. So far, there is limited evidence of the effectiveness of psychoeducational interventions for healthy children.

Mon, 01/16/2023 - 12:35

Perceived Stress among Caregivers of Children with Autism Spectrum Disorder: A State-Wide Study

Background: Caregivers of children with autism spectrum disorder (ASD) experience increased stress and more significant negative caregiving consequences than those with typically developing children. There is a lack of studies specifically focusing on stress among caregivers with ASD children in Asian countries. The current study examines levels of perceived stress and factors associated with it among caregivers in Kelantan, Malaysia.

Mon, 01/16/2023 - 12:31

Perspectives of Afghan refugee mothers on the experience of caring for a child with cancer: a qualitative analysis

Background: Cancer in children causes many challenges for the family. When a refugee family experiences it, its impacts may be different and more specific considerations for care may be needed.

Aims: This study aimed to explore the experiences of Afghan mothers living in the Islamic Republic of Iran who had a child with cancer.

Mon, 01/16/2023 - 12:28

Supporting the family of a child with a genetic condition

The health visitor has a fundamental role in supporting families with a child who has a genetic condition to encourage physical and emotional wellbeing, says Amy Noakes.

Mon, 01/16/2023 - 12:26

Family support and family and child-related outcomes among families impacted by disability in low- and middle-income countries: A scoping review

There is a growing interest in understanding the relationship between family support and family or child-related outcomes in high-income countries. However, this has received little attention in low- and middle-income countries. The purpose of this review was to explore the relationship between family support and family and child-related outcomes among families affected by disability in low- and middle-income countries. We conducted a scoping review of five databases using search terms related to 'family', 'support', 'child', and 'disability'.

Mon, 01/16/2023 - 12:23

Unsung heroes, flying blind-A metasynthesis of parents' experiences of caring for children with special health-care needs at home

Aims and Objectives: To aggregate, synthesise and interpret qualitative research studies of parents' experiences of caring for a child with special health-care needs at home.

Mon, 01/16/2023 - 12:21

Family‐centred care of children and young people in the acute hospital setting: A concept analysis

Aims and objectives: To provide an operational definition of family‐centred care as it applies to hospitalised children. The objective was to provide clarification of the concept by comprehensively analysing the evidence.

Background: Terms associated with family‐centred care include partnership‐in‐care, negotiated care, parental participation/involvement in care, care‐by‐parent and child‐centred care. The absence of a universally accepted definition contributes to its inconsistent implementation.

Mon, 01/16/2023 - 12:19

Experiences of children with special educational needs and disabilities and their families in the United Kingdom during the coronavirus pandemic

Purpose: The purpose of this paper is to outline the experiences of children with special educational needs and disabilities (SEND) and their families during the coronavirus pandemic.

Design/methodology/approach: This paper draws on research gathered and collated by three different organisations working with families of children and young people with SEND.

Mon, 01/16/2023 - 12:14

Parent-mediated interventions for promoting communication and language development in young children with Down syndrome

Background: Communication and language development are areas of particular weakness for young children with Down syndrome. Caregivers' interaction with children influences language development, so many early interventions involve training parents how best to respond to their children and provide appropriate language stimulation. Thus, these interventions are mediated through parents, who in turn are trained and coached in the implementation of interventions by clinicians.

Mon, 01/16/2023 - 12:12

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