CAREN logo

You are here

  1. Home
  2. Wiley

Wiley

Medical care experiences of children with autism and their parents: A scoping review

Children with autism spectrum disorder (ASD) and their families may benefit from the provision of additional supports in health care settings, particularly when preparing for and attending medical appointments. This review examined literature that describes experiences in medical care settings from the perspective of patients under age 18 with ASD and their caregivers. A scoping review was conducted to examine the experiences of children with ASD and their families in medical care settings. Twenty-nine studies meeting inclusion criteria were identified and reviewed.

Tue, 12/13/2022 - 14:04

The impact of pediatric atopic dermatitis on families: A review

Background: Atopic dermatitis (AD) is an extremely common childhood disease, with considerable impact on the quality of life of affected children and their families. While pruritus is the hallmark symptom of this disease, AD has been well-documented to impact patients beyond physical symptoms, resulting in behavior problems, mood disorders, and sleep disturbance.

Objective: This literature review outlines how atopic dermatitis impacts the quality of life of families of children affected by AD.

Tue, 12/13/2022 - 12:44

Being in control and striving for normalisation: A Norwegian pilot study on parents’ perceptions of hospital‐at‐home

In recent decades, there has been a shift from hospitalisation to home care throughout the Western world, even for children. Hospital‐at‐home for children is in a developmental phase and represents a new service model in Norway. The aim of this pilot study conducted in a Norwegian healthcare setting was to explore how parents with a sick child experienced early hospital discharge and further care at home. The qualitative data are drawn from nine interviews with parents with a child admitted to hospital‐at‐home.

Mon, 12/12/2022 - 13:04

Psychological well-being and family distress of Italian caregivers during the COVID-19 outbreak

Objecives: The present study aimed to investigate the personal well-being and family distress of Italian caregivers during the lockdown. Methods: Five hundred sixty-five family caregivers and 638 age- and sex-matched noncaregivers completed a web-based survey. The following scales were administered to all participants: General Health Questionnaire-12 items (GHQ-12), Insomnia Severity Index (ISI), Brief Resilient Coping Scale (BRCS), and Family Distress Index (FDI).

Thu, 09/01/2022 - 16:43

The Tele-STELLA protocol: Telehealth-based support for families living with later-stage Alzheimer's disease

Objectives: We aim to establish the feasibility and acceptability of the Tele-STELLA (Support via Telehealth: Living and Learning with Advancing Alzheimer's Disease and Related Dementias) intervention. We will also assess the efficacy of the intervention in reducing the frequency of behavioural symptoms of dementia as well as family Care Partner reactivity to the symptoms. Methods: This is a multi-component, quasi-experimental study that focuses on facilitating effective management of behavioural symptoms that occur in the later stages of dementia.

Wed, 08/31/2022 - 21:10

Labor market participation and productivity costs for female caregivers of minor male children with Duchenne and Becker muscular dystrophies

Introduction/Aims: Duchenne and Becker muscular dystrophies (DBMD) are X-linked neuromuscular disorders characterized by progressive muscle weakness, leading to decreased mobility and multisystem complications. We estimate productivity costs attributable to time spent by a parent caring for a male child under the age of 18 y with DBMD, with particular focus on female caregivers of boys with Duchenne muscular dystrophy (DMD) who have already lost ambulation.

Wed, 08/31/2022 - 14:42

Estimating an exchange-rate between care-related and health-related quality of life outcomes for economic evaluation: An application of the wellbeing valuation method

Background: Quality of life outcomes for family carers and patients may be measured in different ways within the same economic evaluation. Methods: We used the wellbeing valuation method to calculate "exchange rates" between care-related outcomes (the Carer Experience Scale and CarerQoL-7D) and health-related (the EQ-5D-5L) outcomes. Data on quality of life outcomes were collected through a postal quality of life survey in the UK.

Tue, 08/30/2022 - 17:19

Enablers and barriers in hospital‐to‐home transitional care for stroke survivors and caregivers: A systematic review

Aims and objectives: To synthesise qualitative research evidence on the experience of stroke survivors and informal caregivers in hospital‐to‐home transitional care. Background: Due to a shortened hospital stay, stroke survivors/caregivers must take over complex care on discharge from hospital to home. Gaps in the literature warrant a meta‐synthesis of qualitative studies on perceived enablers and barriers during this crucial period.

Tue, 08/30/2022 - 16:07

e-Health as a tool to improve the quality of life of informal caregivers dealing with stroke patients: Systematic review with meta-analysis

Objective: The objective of this review was to elucidate the evidence related to utilizing e-Health as a tool in improving the quality of life of informal caregivers of dependent patients due to cerebrovascular accident (CVA). Methods: This systematic review with meta-analysis includes 13 studies. For these studies, seven databases were searched between 2009 and 2019. A random-effects model was adopted for overall estimation and to explain the heterogeneity.

Wed, 08/24/2022 - 22:14

Determinants of primary and non‐primary informal care‐giving to home‐based palliative care cancer care‐recipients in Ontario, Canada

Background: Informal care plays an important role in the care of care‐recipients. Most of the previous studies focused on the primary caregivers and ignored the importance of non‐primary caregivers. Moreover, little is known about the provision of informal care in the context of home‐based palliative care. Objectives: The purpose of this study was to examine the provision of primary and non‐primary informal care‐giving and their respective determinants.

Wed, 08/24/2022 - 15:19

Page 6 of 22