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Family-centred care for children and young people with cerebral palsy: results from an Italian multicenter observational study

Background: Family‐centred care (FCC) is recognized as the model of best practice for the provision of services for children who have physical disabilities and their families.

Tue, 01/17/2023 - 09:35

"There Is No Before Cancer… There Is Only Cancer." Perceived Late Effects of Pediatric Cancer on Survivors

Background: Although "late effects" connotes experiencing effects later in life, they can emerge immediately after active treatment. The effects that survivors experience have been reported but rarely from the point of view of the survivors regarding their life after treatment.

Objective: To examine the perceived late effects of pediatric cancer on survivors and their self-identified primary support persons in order to understand the multifaceted nature of living after a pediatric cancer diagnosis.

Tue, 01/17/2023 - 09:33

The Balancing Act: Mothers' Experiences of Providing Care to Their Children With Cancer

The effect of pediatric cancer and its treatment are overwhelming-these effects are multifaceted and felt by the entire family unit throughout the diagnosis and treatment process. Children experience a plethora of effects as a result of the treatment process; however, it is imperative to remember that a pediatric cancer diagnosis affects parents physically, emotionally, and psychologically as well.

Tue, 01/17/2023 - 09:30

Parent Perceptions on Transfers to Pediatric Emergency Departments and the Role of Telemedicine

Objective: Real-time audiovisual consultation (telemedicine) has been proven feasible and is a promising alternative to interfacility transfer. We sought to describe caregiver perceptions of the decision to transfer his or her child to a pediatric emergency department and the potential use of telemedicine as an alternative to transfer.

Tue, 01/17/2023 - 09:28

Correlates of Subjective Caregiver Strain in Caregivers of Youth Evaluated in a Pediatric Psychiatric Emergency Room

Background: Although caregiver burden is relevant to the outcome for psychiatrically ill youth, most studies have focused on caregiver burden in the community or research settings. Therefore, we aimed at evaluating the subjective caregiver strain (SCS) at the time of presentation of youth to a pediatric psychiatric emergency room (PPER), assessing potential correlates to provide leads for improvements in formal support systems.

Tue, 01/17/2023 - 09:25

The relationship between barriers to care, caregiver distress, and child health-related quality of life in caregivers of children with cancer: A structural equation modeling approach

The current study examined the relationship between demographic variables, treatment factors, and perceived barriers to care to both caregiver distress and caregiver-reported child health-related quality of life in caregivers of children diagnosed with cancer utilizing path analysis. Parental distress is examined as a potential mediator between barriers to care and income, as well as child age and caregiver-reported health-related quality of life (HRQOL). The final model demonstrated close fit to the data.

Tue, 01/17/2023 - 09:21

The Implementation of Parent–Child Interaction Therapy for the Treatment of Tourette Syndrome and Disruptive Behavior

A diagnosis of Tourette syndrome (TS) can confer a plethora of negative outcomes including impaired psychosocial functioning, academic difficulties, disruptive behavior, and mood dysregulation. Further, children diagnosed with TS can engender immense amounts of burden and stress experienced by their caregivers which can put strain and tension on the parent–child relationship.

Tue, 01/17/2023 - 09:19

A Study to Assess the Quality of Life (QOL) Among Parents of Children with Acute Lymphoblastic Leukemia (ALL) Attending Oncology Out Patient Department (OPD) In Selected Hospital of Kolkata, West Bengal, India

Introduction: Acute Lymphoblastic Leukemia (ALL) is the most common childhood cancer. The leukemia affects not only the quality of life (QOL) of children but also their caregivers. This study aimed to identify the Quality of Life of parents of children with ALL and to find out the association between QOL of parents of children with ALL and the selected demographic variables.

Tue, 01/17/2023 - 09:17

Therapeutic endings: Reflections on the termination of counselling-based research relationships among patients with cystic fibrosis and their caregivers

Some time and temporarily scholars suggest that separation is one of the most arduous of human experiences. Given what is often a long history of unpleasant relationship endings, the clients of therapy themselves may be particularly susceptible to painful ruptures. Informed by a qualitative approach, I describe and explain how 10 Canadian children living with cystic fibrosis and their caregivers felt at the end of a research-based counselling support programme. At the programmes' end, the participants reluctantly but unquestioningly accepted the decision.

Tue, 01/17/2023 - 09:15

Parent moral distress in serious pediatric illness: A dimensional analysis

Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear.

Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness.

Tue, 01/17/2023 - 09:12

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