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The embodied spaces of children with complex care needs: Effects on the social realities and power negotiations of families

This paper presents research findings that advance knowledge around the power and agency families with children with complex care needs (CCN). Our conceptual framework uses concepts from geography towards situating the experiences and social realities of family carers within the 'embodied space of care'. The data originate from a longitudinal qualitative study of Canadian families with children with CCN.

Tue, 12/13/2022 - 13:23

Dads care too! Participation in paid employment and experiences of workplace flexibility for Australian fathers caring for children and young adults with disabilities

This study uses Australian survey data to explore whether caring for children and young people with disabilities affects paid employment participation of fathers who identify as the secondary caregiver. More fathers in the study were in full-time employment than those in the general Australian population, but they worked fewer hours, often in jobs they did not enjoy or roles with less responsibility. Over one third of fathers reported that caring had impacted on their job opportunities or career progression, particularly those whose children had more severe disabilities.

Tue, 12/13/2022 - 13:20

Quality of life of primary caregivers of children with cerebral palsy: a comparison between mother and grandmother caregivers in Anhui province of China

Background: The aims of the study are to evaluate the quality of life of mother and grandmother primary caregivers of children with cerebral palsy (CP) and to compare the difference between these two groups of caregivers.

Tue, 12/13/2022 - 13:16

Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment

Background: Pediatric obsessive-compulsive disorder (OCD) is associated with deleterious familial effects; caregivers are often enmeshed in the disorder and can experience considerable burden and decreased quality of life (QoL). Consequently, this study examined burden and QoL in caregivers of youth with OCD enrolled in an intensive outpatient or partial hospitalization program.

Tue, 12/13/2022 - 13:11

Meanings assigned by families about children's chronic disease diagnosis

Objectives: to understand the meanings assigned by family caregivers about children's chronic disease diagnosis

Methods: qualitative study, which used as theoretical framework the Symbolic Interactionism, and methodological, the Grounded Theory. It was held in a pediatric unit in Southern Brazil, in 2016, through interviews submitted to open and axial analysis, with the participation of 20 family caregivers of hospitalized children.

Tue, 12/13/2022 - 13:07

Health-Related Quality of Life and Related Factors among Primary Caregivers of Children with Disabilities in Shanghai, China: A Cross-Sectional Study

Health-related quality of life (HRQOL) of caregivers of children with disabilities (CWD) is important for both children's rehabilitation and caregivers' life, but the corresponding attention is far from enough in mainland China. Thus, we investigated the HRQOL of 170 caregivers and related factors in Shanghai. The 12-item Short Form Health Survey (SF-12) was used to measure HRQOL. The potential factors were collected, including child characteristics, caregiver characteristics, and environmental factors.

Tue, 12/13/2022 - 12:59

Development and validation of the family management scale for children with asthma (FMSCA)

Objective: This study aims to develop and validate the Family Management Scale for Children with Asthma (FMSCA) in China context.

Tue, 12/13/2022 - 12:55

Factors determining parenting stress in mothers of children with atopic dermatitis

Background: Atopic dermatitis (AD) influences a child's emotional and social well-being, as well as his or her physical health. The influence of AD on the daily lives of parents and caregivers has also been documented. This study examined how parenting stress is affected by demographic background, characteristics of children's AD, and their family systems.

Tue, 12/13/2022 - 12:51

Anxiety among caregivers of children with epilepsy from western China: A cross-sectional survey

The current study aimed to evaluate the status of anxiety among caregivers of children with epilepsy and examine the associated factors.A cross-sectional study was conducted in western China, which consecutively recruited children with epilepsy in 2018. The self-rating anxiety scale (SAS) was used to assess the status of anxiety among caregivers of children with epilepsy.

Tue, 12/13/2022 - 12:47

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

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