You are here

  1. Home
  2. Parents

Parents

Severity of disease and quality of life in parents of children with alopecia areata, totalis, and universalis: A prospective, cross-sectional study

Background: Caregiver-oriented quality of life (QoL) research in alopecia areata is limited. No study has used a parent-tailored survey to examine the relationship between QoL and severity of alopecia as measured by Severity of Alopecia Tool (SALT) scores.

Objectives: This is a prospective study that describes QoL in parents of pediatric patients with all subtypes of alopecia areata and investigates the relationship between QoL and severity of disease, duration of disease, and age of patients.

Wed, 01/11/2023 - 12:38

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

Parents’ satisfaction with child psychiatry

Aims: Effective social and healthcare services are important for recipient point of view. Reforms in field of social and health care affect straight to the lives of children, adolescents and families. Voice of the parents’ of the child psychiatric patient must be heard during reforms. The purpose of this study was to explore the parents’ satisfaction with the child psychiatric clinic in southern Finland in the autumn 2017.

Wed, 01/11/2023 - 11:50

Determinants of health-related quality of life proxy rating disagreement between caregivers of children with cancer

Purpose: Proxy reports of health-related quality of life (HRQoL) are commonly used in pediatric oncology. However, it is not known if caregivers' reports differ. This study therefore aims to compare paternal and maternal proxy reports, and explore determinants of couple disagreement (sociodemographic and medical characteristics, and parental QoL and distress).

Tue, 01/10/2023 - 16:45

Parents’ decision-making about attending an emergency department with their child

There is a possibility that front-line services, particularly out-of-hours services, are not accessible to some parents. The aim of this service evaluation was to gain a better understanding about visits to one emergency department (ED) in the south of England by children and their parents or carers. The specific focus was to elucidate the reasons behind frequent ED attendance and indicate a potential redesign of services.Semi-structured interviews were conducted with 13 parents.

Tue, 01/10/2023 - 16:26

Quality of Life in Caregivers of Patients With Cystic Fibrosis: An Integrated Literature Review

Cystic fibrosis (CF) is a life-shortening genetic disease with many treatment requirements that necessitate the participation of a caregiver, especially if the patient is a child. We performed an integrated literature review of original research evaluating quality of life in caregivers of patients with CF. We searched the terms quality of life, cystic fibrosis, and caregivers in the MEDLINE, CINAHL, Child Development and Adolescent Studies, PsycARTICLES, and Psychology and Behavioral Sciences Collection databases from 2007 to 2017.

Thu, 01/05/2023 - 18:11

The Applicability of the "Revised Burden Measure" in Pediatric Settings: Measuring Parents' Caregiving Burdens and Uplifts

In pediatric settings, a valid and reliable assessment of negative and positive dimensions of caregiving can inform intervention processes and improve parent–child adaptation outcomes. While caregiving is a normative component of parenting, the experience can be quantitatively and/or qualitatively different for parents of children with a chronic health condition. The aim of this study was to systematically examine the psychometric properties of the "Revised Burden Measure" in a sample of parents of children with and without chronic health conditions.

Thu, 01/05/2023 - 16:11

Parent Perspectives on Pediatric Inpatient OpenNotes

Introduction: 169 U.S. health systems now engage in OpenNotes: a movement to share clinical notes with patients. Few studies have focused on releasing notes during hospitalization, pediatrics, or parents/caregiver perspectives.

Thu, 01/05/2023 - 15:51

Physician and parent barriers to the use of oral corticosteroids for the prevention of paediatric URTI-induced acute asthma exacerbations at home

Objectives: Administration of oral corticosteroids at the onset of an upper respiratory tract infection (URTI) can be effective in the management of acute asthma exacerbations in children. This study was designed to identify barriers to parent-initiated implementation of clinical practice guideline-recommended use of oral corticosteroids for prophylaxis against severe asthma exacerbations in children.

Thu, 01/05/2023 - 15:43

Page 4 of 15