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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

Psychosocial Risk Profiles Among American and Dutch Families Affected by Pediatric Cancer

Objective: Little is known about relations between domains of psychosocial risk among pediatric cancer populations. The Psychosocial Assessment Tool 2.0 (PAT2.0) is one internationally validated screening measure that can examine these relations. This study aimed to examine risk profiles and predictors of these patterns exhibited by American and Dutch families.

Thu, 01/05/2023 - 18:04

Burden of Care Among Mothers Having Children with Congenital Heart Diseases

Introduction: Congenital Heart Disease (CHD) is a problem with structure and function of the heart that is present at birth. Children with CHD require special care, treatment and follow up for a number of common conditions which may be quite straining to the care givers. The objective of the study was to find out the burden of care among mothers having children with CHD.

Thu, 01/05/2023 - 18:00

Satisfaction With Care Coordination for Families of Children With Disabilities

Introduction: Children with disabilities have significant health care needs, and receipt of care coordinator services may reduce caregiver burdens. The present study assessed caregivers' experience and satisfaction with care coordination.

Thu, 01/05/2023 - 17:57

Improved quality-of-life of caregivers of children with asthma through guideline-based management

Objective: The quality of life (QOL) of caregivers of children with asthma may be related to children's responses to asthma management.

Aim: To evaluate change in QOL over time of caregivers of children with asthma through guideline-based management.

Thu, 01/05/2023 - 17:53

Delay in pediatric epilepsy surgery: A caregiver's perspective

The timing of epilepsy surgery is complex, and there is not a structured pathway to help families decide whether to continue medical management or pursue surgical treatment. We surveyed caregivers of pediatric epilepsy surgery patients. Fifty-eight respondents answered the majority of questions. Thirty caregivers wished their child had undergone epilepsy surgery earlier compared with twenty who felt surgery was done at the appropriate time, and eight were unsure.

Thu, 01/05/2023 - 17:05

How and why should we engage parents as co‐researchers in health research? A scoping review of current practices

Background: The importance of engaging parents in health research as co‐researchers is gaining growing recognition. While a number of benefits of involving parents as co‐researchers have been proposed, guidelines on exactly how effective engagement can be achieved are lacking. The objectives of this scoping review were to (i) synthesize current evidence on engaging parents as co‐researchers in health research; (ii) identify the potential benefits and challenges of engaging parent co‐researchers; and (iii) identify gaps in the literature.

Thu, 01/05/2023 - 17:02

Cluster analysis for family management of Chinese children with chronic kidney diseases

This study aimed to identify patterns of family management and its predictors based on the perception of the care experience from 339 caregivers of Chinese children with chronic kidney disease in multiple medical centers. Each caregiver completed the Family Management Measure questionnaires. Cluster analysis generated five patterns: effective (12.7%), impaired (14.5%), burdensome (21.2%), disorganized (27.7%), and concerning (23.9%). Multinomial logistic regression indicated that child's age, disease duration, family income, and paternal employment predicted cluster membership.

Thu, 01/05/2023 - 16:59

Family management affecting transition readiness and quality of life of Chinese children and young people with chronic diseases

Transition from pediatric to adult health care is a key milestone for children and young people (CYP) with chronic conditions. Family management (FM) and self-management are two important concepts during the process. This study aimed to explore the relationships between FM, self-management and transition readiness, and quality of life (QoL), and identify the potential CYP or family factors influencing the relationships. Data about FM, self-management and transition readiness, QoL, and various contextual factors were collected from 268 caregiver-child pairs.

Thu, 01/05/2023 - 16:57

The burden of systemic juvenile idiopathic arthritis for patients and caregivers: an international survey and retrospective chart review

Objectives: To investigate the burden of systemic juvenile idiopathic arthritis (SJIA) on health-related quality of life (HRQOL) and resource use of patients and caregivers (families) on biologic therapy.

Thu, 01/05/2023 - 16:54

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