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Hospitalized Children - Parents' and Nurses' Collaboration in Procedural Situations

Background: When children are hospitalized, collaboration between parents and nurses is initiated. This qualitative study explored parents' and nurses' experiences of collaboration, and the sharing of responsibility and tasks in the care of hospitalized children regarding procedural and treatment situations.

Wed, 12/21/2022 - 10:26

Dietary treatment of Crohn's disease: perceptions of families with children treated by exclusive enteral nutrition, a questionnaire survey

Background: Diet is strongly associated with the aetiology of Crohn's Disease (CD) and exclusive enteral nutrition (EEN) is the primary induction treatment in paediatric CD. This study explored opinions around the use of EEN and alternative novel, solid food-based diets (SFDs) expressed by paediatric patients with CD, previously treated with EEN and their parents.

Wed, 12/21/2022 - 10:22

Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18

The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method.

Wed, 12/21/2022 - 10:14

Relationships between caregiver decisions about communication approach and language outcomes for children using cochlear implants*

With regard to parents making communication approach decisions for their children with hearing loss, Crowe et al. (2014) suggested that key themes were: feasibility; sources of information; child characteristics; and, future opportunities. For children using cochlear implants (CI/s), the present study aimed to understand parental preferences regarding communication, the sources of information they used, and child language outcomes. Demographic and language data were available for 162 children using CI/s (mean age at CI 3.74 years; SD 3.83).

Wed, 12/21/2022 - 10:11

Patient and parental assessment of factors influencing the choice of treatment in pediatric hydrocephalus

OBJECTIVE: Choosing between competing options (shunt or endoscopic third ventriculostomy) for the management of hydrocephalus requires patients and caregivers to make a subjective judgment about the relative importance of risks and benefits associated with each treatment. In the context of this particular decision, little is known about what treatment-related factors are important and how they are prioritized in order to arrive at a treatment preference.

Wed, 12/21/2022 - 10:05

Quality of life of the family of children with asthma is not related to asthma severity

The quality of life for the family is an important outcome of childhood asthma. The aim of the study was to describe the quality of life in families who have a child with asthma. The Pediatric Quality of Life Inventory Family Impact Module was completed by the parents of 527 children with asthma. The median overall score was 75.0 (interquartile range 63.9, 87.5).

Wed, 12/21/2022 - 10:01

Caregiver Stress, Coping Strategies, and Support Needs of Mothers Caring for their Children Who Are Undergoing Active Cancer Treatments

The diagnosis of childhood cancer not only affects the life of the child but also impacts the lives of the caregivers as well. This study aims to explore the caregiving stress, coping strategies, and support needs of mothers caring for children/adolescents with cancer during the active treatment phase. Individual semi-structured interviews were conducted, and two authors independently and thematically analyzed data. Caregiving mothers went through a process of emotional changes and a change in lifestyles when their children were diagnosed with cancer and undergoing treatments.

Wed, 12/21/2022 - 09:55

Assessing the needs of caregivers of children with disabilities in Penang, Malaysia

Disability in a child not only affects the child but also presents socioeconomic and psychological impacts to the child's family. This study aims to describe the service needs of caregivers of children with disabilities in the state of Penang, Malaysia, and to determine the child and family characteristics predisposing to having more caregiver needs. A cross-sectional survey was conducted between February and June 2013 among caregivers of children aged 0-12 years with disabilities registered with the Penang Department of Social Welfare.

Wed, 12/21/2022 - 09:53

A systematic review of instruments assessing dimensions of distress among caregivers of adult and pediatric cancer patients

Objective: Caregivers of cancer patients face intense demands throughout the course of the disease, survivorship, and bereavement. Caregiver burden, needs, satisfaction, quality of life, and other significant areas of caregiving are not monitored regularly in the clinic setting, resulting in a need to address the availability and clinical effectiveness of cancer caregiver distress tools.

Wed, 12/21/2022 - 09:50

Perspectives on Palliative Care Among Duchenne Muscular Dystrophy Patients and Their Families in Singapore

Introduction: With better medical care, patients with Duchenne muscular dystrophy (DMD) now live longer but face more complex medical and social needs. This study described the perceptions of DMD patients and their families of disease-specific palliative care services in Singapore.

Wed, 12/21/2022 - 08:52

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