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Routledge

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

Barriers and Facilitators to Caring for a Child with Cerebral Palsy in Rural Communities of the Western Cape, South Africa

Family members of children with disabilities have become more involved in their children's care and have adopted the role of primary caregiver. Due to the varying degrees of the condition, children with cerebral palsy (CP) often require greater involvement from their caregivers. Fifteen caregivers for children with CP residing in rural communities of the Western Cape, South Africa, were interviewed to explore the barriers and facilitators that they encountered.

Wed, 01/11/2023 - 12:46

Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy

Objective: This study examines theoretical covariates of health-related quality of life (HRQL) in parents of pediatric brain tumor survivors (PBTS) following completion of tumor-directed therapy.; Methods: Fifty PBTS (ages 6-16) completed measures of neurocognitive functioning and their parents completed measures of family, survivor, and parent functioning.

Wed, 01/11/2023 - 12:30

"You Know the Medicine, I Know My Kid": How Parents Advocate for Their Children Living With Complex Chronic Conditions

Caring for a child with a chronic condition has received considerable attention in the pediatric health literature. Today, approximately 1 out of 5 North American children are diagnosed with a chronic condition that requires parents to become caregivers and advocates. Although advocacy is regarded as a significant aspect to parental caregiving, more research is needed to better define this oversimplified and misrepresented concept in clinical practice and research. Subsequently, we interviewed 35 parents of children diagnosed with complex chronic conditions.

Wed, 01/11/2023 - 12:13

The power of siblings and caregivers: under-explored types of social support among children affected by HIV and AIDS

Children affected by HIV and AIDS have significantly higher rates of mental health problems than unaffected children. There is a need for research to examine how social support functions as a source of resiliency for children in high HIV-prevalence settings such as South Africa. The purpose of this research was to explore how family social support relates to depression, anxiety, and post-traumatic stress (PTS).

Thu, 01/05/2023 - 18:08

When my four-year-old got cancer: a retrospective on resilience in a paediatric oncology ward

The author presents an interpersonal experience between the author and her son during childhood cancer treatment and care, illustrating the complex relationship between childhood cancer and the term 'resilience'. During treatment and care, nurses used the term 'resilience' in an apparent attempt to reassure her. However, the author found that the concept distanced her from her and her son's experience, creating emotional distress for him.

Sun, 01/01/2023 - 15:30

Caregiver Attendance as a Quality Indicator in the Implementation of Multiple Evidence-Based Practices for Children

Objective: This study investigated a quality indicator for children's mental health, caregiver attendance in youth psychotherapy sessions, within a system-driven implementation of multiple evidence-based practices (EBPs) in children's community mental health services. Method: Administrative claims from nine fiscal years were analyzed to characterize and predict caregiver attendance. Data included characteristics of therapists ( n = 8,626), youth clients ( n = 134,368), sessions (e.g., individual, family), and the EBP delivered.

Sun, 01/01/2023 - 14:11

Quality of Life and Socioeconomic Status: A Comparative Study among Mothers of Children with and without Disabilities in Saudi Arabia

Background: A child's disability affects not only that child but also their caregivers. This study compares the quality of life (QoL) of Saudi mothers (primary caregivers) of children with Cerebral Palsy (CP) and Down Syndrome (DS) and mothers whose children do not have a disability, and explores its relationship with socioeconomic status. Methods: Two hundred mothers of children with disabilities and 99 mothers of children without disabilities were recruited from rehabilitation centers and regular schools, respectively.

Wed, 12/28/2022 - 23:47

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