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Understanding carers' lived experience of stigma: the voice of families with a child on the autism spectrum

Background: Existing research suggests that there are several unique challenges associated with caring for a child on the autism spectrum. Despite a growing evidence base regarding autism spectrum disorders and their increasing prevalence, children on the autism spectrum and their families continue to perceive stigmatisation from various sources throughout the community. These perceptions of stigma can profoundly impact the quality of life of these children and their carers alike.

Wed, 01/18/2023 - 15:19

The rural mother's experience of caring for a child with a chronic health condition: An integrative review

Aims and objectives: To identify and review the literature on rural mothers’ experiences in caring for a child with a chronic health condition. Background: Families living with a child who has a chronic health condition experience many challenges; these are often amplified for families living in rural areas, where issues such as the distance from services add further challenges the family must manage. Like many children, rural children with chronic health conditions are primarily cared for by their mothers.

Wed, 01/18/2023 - 15:14

“The child’s got a complete circle around him”. The care of younger children (5–11 years) with CFS/ME. A qualitative study comparing families’, teachers’ and clinicians’ perspectives’

Background: Society needs to improve the care of children with complex needs. Guidelines recommend integrating care across health and educational settings, however, there is little research on whether this is achieved or how this can be done in practice. Our aim was to address this gap by examining how the care of children (aged 5–11 years) with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) is shared across home, education and health settings, in order to generate recommendations for integrating care.

Wed, 01/18/2023 - 15:09

Building bridges from hospital to home: Understanding the transition experience for the newly diagnosed pediatric oncology patient

Background: Caregivers of pediatric oncology patients are expected to understand and adhere to a complex medical plan of care while at home; yet little is known about how to assess and evaluate the caregivers' abilities to adequately meet these demands. The purpose of this study was to describe the issues and daily challenges faced by caregivers as they transition from hospital to home after their child's cancer diagnosis.

Wed, 01/18/2023 - 14:58

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

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