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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

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

Tobacco smoke exposure in pediatric cystic fibrosis: A qualitative study of clinician and caregiver perspectives on smoking cessation

Objective: Tobacco smoke exposure has negative impacts on the lung health of children with cystic fibrosis (CF), yet evidence-based strategies for smoking cessation have not been tested with or tailored to CF caregivers. This qualitative study identified barriers and facilitators of smoking cessation in this population and outlined potential interventional approaches.

Mon, 01/16/2023 - 12:08

Caring for a child with type 1 diabetes during COVID-19 lockdown in a developing country: Challenges and parents' perspectives on the use of telemedicine

Background and Aim: Jordan implemented abrupt and extreme lockdown measures to prevent the spread of COVID-19. This study aims to evaluate the effect of these measures on paediatric patients with type 1 diabetes in terms of acute metabolic complications and shortages in insulin and glucose measuring supplies. It also evaluates the caregivers' perceptions of the use of telemedicine during the lockdown.<bold>Methods: </bold>This is a questionnaire-based cross-sectional study.

Mon, 01/16/2023 - 12:04

Understanding Barriers to Initial Treatment Engagement among Underserved Families Seeking Mental Health Services

This mixed method study examined factors associated with parents not attending their child's mental health treatment after initially seeking help for their 2-5 year old child. It was part of a larger study comparing two evidence-based treatments among low-income racial/ethnic minority families seeking child mental health services. Of 123 parents who initiated mental health treatment (71% African American or multi-racial; 97.6% low-income), 36 (29.3%) never attended their child's first treatment session.

Mon, 01/16/2023 - 12:02

Children with medical complexity: Neglect, abuse, and challenges

This review on recognizing and responding to suspected maltreatment of children with medical complexity is organized around several questions: 1) What is meant by the term, "children with medical complexity?" Does this term represent something distinct from "children with special health care needs," or "children who are medically fragile?" 2) What constitutes medical neglect of children with medical complexity? How can it be distinguished from expected and reasonable shortcomings in the care that can realistically be provided to a child?

Mon, 01/16/2023 - 11:59

The needs of siblings of children with a life-threatening illness, part 2: Psychometric validation of the IBesFEMS

Life-threatening illnesses in children have a significant impact on the lives of their brothers and sisters. Consequently, special attention must be paid to the specific needs of these siblings to help them cope with their situations. To address this issue, we developed an inventory of the needs of the adolescent siblings of severely ill children, the Inventaire des Besoins de la Fratrie d'Enfants Malades Severement (IBesFEMS) [Needs Inventory for Siblings of Critically Ill Children]. The present article describes a preliminary validation study of this new instrument.

Mon, 01/16/2023 - 11:57

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