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Journal article

Experiences of family caregivers caring for critically ill children hospitalized in a pediatric intensive care unit: a qualitative systematic review protocol

Review Objective: This review aims to synthesize the best available evidence on the experiences of family caregivers in caring for their critically ill children who have been hospitalized in a pediatric intensive care unit.

Tue, 12/13/2022 - 12:16

Exploring the Experiences of Parent Caregivers of Adult Children With Schizophrenia: A Systematic Review

This is a qualitative evidence synthesis on the experiences of parents caring for their adult child with schizophrenia. The Joanna Briggs Methodology for systematic reviews guided the study and standard systematic review procedures were followed.

Tue, 12/13/2022 - 12:11

Family Caregivers of Children With Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination

OBJECTIVE: To examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL).

Tue, 12/13/2022 - 12:07

Presurgical Concerns of Primary Family Caregivers of Children With Cerebral Palsy

Background: Primary family caregivers (PFCs) of children with cerebral palsy have many worries and concerns when their children face orthopedic surgery. Levels of PFC stress about the upcoming surgery is related to the child's level of gross motor function as well as the support they receive from medical professionals.

Tue, 12/13/2022 - 12:02

Age of Parental Concern, Diagnosis, and Service Initiation Among Children With Autism Spectrum Disorder: AJMR

Children with autism spectrum disorder (ASD) require substantial support to address the core symptoms of ASD and co-occurring behavioral/developmental conditions. This study explores the early diagnostic experiences of school-aged children with ASD using survey data from a large probability-based national sample. Multivariate linear regressions were used to examine age when parent reported developmental concern to doctor, received ASD diagnosis, and first obtained services.

Tue, 12/13/2022 - 11:58

Caring strategies in parents of children with cancer

Background: The increased prevalence of cancer in children influences the family as the main child caregiver. Regarding the spiritual dimension for increasing the life quality of parents and its effect on the management of the conditions induced by the disease, the goal of this study was to determine the strategy of care in parents of cancer children. Materials and Methods: This study was performed with a qualitative method using the content analysis approach.

Tue, 12/13/2022 - 11:53

Vulnerability and agency across treatment-seeking journeys for acutely ill children: how family members navigate complex healthcare before, during and after hospitalisation in a rural Kenyan setting

Background: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations and ability to make choices and act (their agency). We examined vulnerability and agency across treatment-seeking journeys for acutely ill children and considered the implications for policy and practice.

Tue, 12/13/2022 - 11:24

Awareness of genetic testing for children with autism spectrum disorder among caregivers in an autism support group

Recent discoveries have improved our understanding of the complex genetic mechanisms underlying autism spectrum disorder (ASD). Despite current guidelines, genetic testing for children with ASD is largely underutilized. This has been attributed to a lack of public awareness regarding genetic testing. The role that autism support groups play in this awareness has not been previously described. A web-based survey was developed and distributed through a community support group to assess the awareness and utilization of genetic testing among caregivers for children with ASD.

Tue, 12/13/2022 - 11:17

Caring for a Child with Phenylketonuria: Parental Experiences from a Eurasian Country

Objectives: Phenylketonuria (PKU) and mild hyperphenylalaninemia (HPA) are characterized by increased blood phenylalanine concentrations varying from mild to severe. Management of PKU was reported to be time consuming and burdensome for caregivers. This study intended to explore the experiences of families caring for a child with PKU/HPA in a country with a high PKU rate.

Tue, 12/13/2022 - 11:13

Walking in the shoes of caregivers of children with obesity: supporting caregivers in paediatric weight management

To incorporate the perspectives and experiences of family caregivers of children with obesity, the KidFit Health and Wellness Clinic, a paediatric weight management programme, embedded feedback opportunities into various stages of programme development. Caregivers were eligible to participate if their children had completed initial 4-week group-based pilot programming or were currently receiving treatment in 10 or 12 week group-based programming. Data were collected through feedback session discussions, audio-recorded, transcribed verbatim and analysed thematically.

Tue, 12/13/2022 - 11:06

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