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Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?

Purpose: This study aims to evaluate the association between the functional independence of children after postnatal spinal dysraphism correction and informal caregivers' burden. Design and Methods: This is a cross-sectional study conducted in a child neurosurgery clinic at a University hospital. We included informal caregivers of children between six months and seven-and-a-half years old who were operated on for spinal dysraphism correction due to myelomeningocele.

Tue, 01/31/2023 - 10:01

The day-to-day experiences of caring for children with Osteogenesis Imperfecta: A qualitative descriptive study

Aims and Objectives: To explore the day-to-day experiences of family caregivers who are caring for children with Osteogenesis Imperfecta (OI).; Background: Osteogenesis Imperfecta is a rare genetic condition known to cause bone fragility. Family caregivers of children with OI play an important role in helping these children live well at home. Design: A qualitative descriptive design was used.; Methods: A qualitative descriptive study was conducted in accordance with the COREQ guidelines.

Tue, 01/31/2023 - 09:46

Coping Among Parents of Teens With Inflammatory Bowel Disease

Background: Parents of teens with inflammatory bowel disease must prepare their children for independent disease self-management. This study characterizes the stressors and coping strategies adopted among parents of teens with inflammatory bowel disease.

Tue, 01/31/2023 - 07:53

The Lived Experience of Parents of Children with Special Healthcare Needs on Public and Private Insurance: A Phenomenological Study

Due to recent advances in medical technology, the number of children with special healthcare needs (CSHCN) is steadily growing in the United States. CSHCN comprise more than 40% of overall healthcare costs nationwide, even though this group is only comprised of 16% of the U.S. child population. There are significant differences between private and public health plans in terms of cost, adequacy, and parent satisfaction. As an added benefit, some public and private health insurance plans offer nursing care coordination (or nursing case management) services.

Tue, 01/10/2023 - 16:56

Educational video: a training strategy for caregivers of children with cleft lip and palate

Objective: To check the knowledge informal caregivers of children with cleft lip and palate acquire about the postoperative care of cheiloplasty and palatoplasty through the use of an educational video.

Tue, 01/10/2023 - 16:30

Caregiver responses to early cleft palate care: A mixed method approach

Objective: This study sought to understand caregivers' (CGs') responses to early cleft lip/palate care for their infants.

Thu, 01/05/2023 - 16:06

Family‐centred care in cystic fibrosis: a pilot study in North Queensland, Australia

Aims: The aims were to: (i) examine perceptions of family‐centred care of parents of children with cystic fibrosis and healthcare professionals who care for them; (ii) test design and tools in a regional population.

Design: Quantitative pilot study of existing questionnaire.

Thu, 01/05/2023 - 15:39

Experiences of family members of children with cystic fibrosis under the light of Callista Roy

Objective: To know the experiences of family members of children with cystic fibrosis under the light of the theory of Callista Roy.

Method: Qualitative research that used the adaptation theoretical framework of Callista Roy for inductive content analysis. Fifteen family members, in a university hospital, between 23 and 63 years old, participated in the study, from September to October 2018.

Thu, 01/05/2023 - 15:01

Challenges, Coping, and Resilience Among Immigrant Parents Caring for a Child With a Disability: An Integrative Review

Purpose: The aim of this integrative review is to synthesize quantitative and qualitative research evidence on challenges in caring for a child with a disability among immigrant parents and to understand their coping strategies and resiliency factors associated with their coping. Methods: A comprehensive literature search was conducted to identify relevant studies from the following databases: MEDLINE, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Scopus, PsycINFO, Social work abstract, Cochrane library, and EMBASE.

Wed, 12/28/2022 - 23:19

Empowering Children with Autism Spectrum Disorder and Their Families within the Healthcare Environment

Caregivers of patients with ASD have reported dissatisfaction with healthcare experiences due to the lack of healthcare provider confidence, knowledge, and skills in managing the challenging behaviors associated with ASD (Bultas & McMillin, 2016). As healthcare professionals, there is a need for continuous education regarding ASD to increase healthcare provider confidence in working with this population, as well as improve overall healthcare experiences for patients with ASD and their families.

Wed, 12/21/2022 - 10:46

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