You are here

  1. Home
  2. Wiley

Wiley

Psychosocial Needs and Facilitators of Mothers Caring for Children with Duchenne/Becker Muscular Dystrophy

Care guidelines for Duchenne/Becker muscular dystrophy (DBMD) include recommendations for assessment of caregivers of patients with DBMD followed by proactive psychosocial interventions. To inform clinical assessment, this study described appraisals of psychosocial needs and caregiving facilitators of mothers of individuals with DBMD. Two hundred and five mothers completed an online survey. More than 50% endorsed unmet needs for managing uncertainty about the future and managing DBMD fears.

Wed, 01/11/2023 - 16:39

School satisfaction in parents of children with severe developmental disabilities

Background: Previous research suggests parents' level of satisfaction with their child's school experience is highly variable. The present author explored school satisfaction in a Canadian sample of parents of children with severe and often complex developmental disabilities.

Wed, 01/11/2023 - 16:24

Six‐Month Follow‐up of the Families on Track Intervention Pilot Trial for Children With Fetal Alcohol Spectrum Disorders and Their Families

Background: When the primary disabilities associated with fetal alcohol spectrum disorders (FASD) are not well supported, individuals are at higher risk for mental health problems and other secondary conditions. The Families on Track (FOT) intervention was designed to prevent secondary conditions and improve family functioning in children with FASD. Promising results from a pilot study demonstrated positive effects on child and caregiver outcomes immediately following the intervention.

Wed, 01/11/2023 - 16:19

Caregiver distress and patient health-related quality of life: psychosocial screening during pediatric cancer treatment

Background: Reports of acceptability of psychosocial screening are limited, and the utility of screening in identifying risk factors for health-related quality of life (HRQL) of children with cancer has not been established.

Wed, 01/11/2023 - 13:57

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

Parents’ satisfaction with child psychiatry

Aims: Effective social and healthcare services are important for recipient point of view. Reforms in field of social and health care affect straight to the lives of children, adolescents and families. Voice of the parents’ of the child psychiatric patient must be heard during reforms. The purpose of this study was to explore the parents’ satisfaction with the child psychiatric clinic in southern Finland in the autumn 2017.

Wed, 01/11/2023 - 11:50

Being a dad to a child with Down’s syndrome: Overcoming the challenges to adjustment

Background: Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers’ experiences of parenting a child with Down's syndrome (DS), their contributions, influences on family functioning and inclusion in their child's support provision.

Tue, 01/10/2023 - 16:21

Young adult carers—Transitioning to adulthood or to adult caring?

Social care policy in the UK emphasises the importance of supporting young adult carers to make positive transitions to adulthood. This paper reports findings from a qualitative study which explored whether young adult carers' services in England are facilitating transitions. The research found that young adult carers' services were endeavouring to raise young adult carers' aspirations and achieve personalised outcomes, in line with the Care Act 2014. However, formal provision for young adult carers in England, in the main, designates them as adult carers.

Tue, 01/10/2023 - 15:28

The importance of family support in pediatrics and its impact on healthcare satisfaction

Aims: To evaluate predictors of healthcare satisfaction for parents whose children received hospital-based healthcare services at the Children's hospital at Landspitali University Hospital.

Methods: In this cross-sectional study, data on perceived family support, family quality of life, expressive family functioning, coping strategies and healthcare satisfaction were collected from 159 mothers and 60 fathers (N = 177 families) of children and adolescents from 2011 to 2012.

Thu, 01/05/2023 - 16:37

Home nursing for children with home mechanical ventilation in the United States: Key informant perspectives

Objectives & Hypothesis: Children with home mechanical ventilation (HMV) require skilled care by trained caregivers, and their families feel the impacts of ubiquitous home nursing shortages. It is unknown which factors determine allocation; no standards for private duty nursing intensity exist. We sought to characterize provider experiences with and opinions on home nursing for children with HMV, hypothesizing providers would describe frequent home nursing gaps across clinical scenarios.

Thu, 01/05/2023 - 15:27

Page 3 of 22