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Impact of caring for children with medical complexity on parents' employment and time

Objectives: This study examined parental care of children with medical complexity (CMC) in terms of time spent providing care and impacts on employment and career.

Methods: We recruited caregivers of 153 CMC in a tertiary center complex care program to participate in a cross-sectional mail survey.

Tue, 01/17/2023 - 16:58

The need to support caregivers during pediatric bone marrow transplantation (BMT): A case report

Objective: Pediatric bone marrow transplants represent a medically stressful, potentially traumatic experience for children and caregivers, and psychological support for parental caregivers is paramount to their long-term well-being. However, many medical centers do not have protocols in place to sustain caregiver well-being during these distressing experiences.

Tue, 01/17/2023 - 16:56

Measures for social support in raising a child with a disability: A scoping review

Background: The benefits of social support for caregivers raising a child with a disability have been identified in the literature. These benefits include the improvement of the mental and physical well‐being of the caregivers, improvement in caregiving styles, and overall improvement of family quality of life. Whilst the benefits of social support are widely reported, the definitions and measures of social support in the literature are varied.

Tue, 01/17/2023 - 16:52

Parent-child interactions and childhood OCD: Comparing OCD families with other clinical and non-clinical families

Background and objectives: Family factors, such as family accommodation and parent-child characteristics, are hypothesised as important maintaining factors in paediatric OCD. There is limited research assessing parent and child behaviour amongst young people with OCD during family interactions. Thus, the current study sought to further explore parent-child interaction variables in OCD, using an observational design with three groups.

Tue, 01/17/2023 - 16:50

Transition experiences between hospital‐ and home‐care for parents of children with hypoplastic left heart syndrome

Purpose: Children with hypoplastic left heart syndrome (HLHS) experience numerous vulnerabilities during transitions from hospital to home during their first year of life. This paper examines the parents’ responses to the situations they experience during the initial interstage transition as described through illness blogs.

Tue, 01/17/2023 - 16:44

Depression, anxiety and quality of life impairment in parents of children with functional lower urinary tract dysfunction

Background: Lower urinary tract dysfunction (LUTD) is a common clinical condition in children, frequently associated with emotional issues both among the patients and their families. The objective of the present study was to measure depressive and anxious symptoms and quality of life (QoL) in parents of LUTD patients.

Tue, 01/17/2023 - 16:42

Assessing the Impact of Atopic Dermatitis on the Patients' Parents with the Visual Instrument 'Caregiver-PRISM'

Background: There is a need to improve the quality of communication between clinicians and parents of young patients with atopic eczema (AE).

Objective: To create a tool to measure the suffering that caregivers experience in association with their child's AE (Caregiver Pictorial Representation of Illness and Self-Measure, Caregiver-PRISM), assess the validity and reliability, and identify factors associated with caregiver suffering.

Tue, 01/17/2023 - 16:39

The needs and service preferences of caregivers of youth with mental health and/or addictions concerns

Background: Caregivers experience significant strains as a result of navigating the complex mental health and/or addiction (MHA) system for their youth with MHA issues. We examined the characteristics of Ontario families with youth with MHA issues and their service needs.

Methods: A cross-sectional survey study investigated the characteristics and service needs of families with youth with MHA issues across the province of Ontario, Canada. A total of 840 caregivers were recruited.

Tue, 01/17/2023 - 16:36

Factors Affecting the Health of Caregivers of Children Who Have an Intellectual/Developmental Disability

There are a growing number of children with an ID/developmental disability. As well, there is evidence of poor health in the caregivers of these children. This article describes a narrative review of the literature regarding the mental and physical health of caregivers of children with ID/developmental disability. The review examined 162 papers. Twenty‐three different factors were identified that may have an effect on the health of these caregivers.

Tue, 01/17/2023 - 16:34

Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines

Epidermolysis Bullosa (EB) is a group of rare genetic disorders resulting in skin fragility and other symptoms. Commissioned by DEBRA International and funded by DEBRA Norway, this evidence-bases guideline provides recommendations to optimise psychosocial wellbeing in EB.An international multidisciplinary panel of social and health care professionals (HCP) and people living with EB was formed. A systematic international literature review was conducted by the panel following the Scottish Intercollegiate Guidelines Network (SIGN) methodology.

Tue, 01/17/2023 - 16:32

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