Usa

Background: Chronically ill children and their parents are at risk for sleep disorders and associated morbidity. Sleep disturbance prevalence and the relationships between parent and child sleep among children with CF are not well defined. Clarifying the presence and impact of sleep disturbances among pediatric CF patients and their parents could lead to improved health in this population. Methods: Cross-sectional study assessing parent-reported sleep in ninety-one CF patients (mean age 8.8 years; 53.8% female) and their primary caregivers.

Context: As children with life-limiting illnesses (LLIs) and life-threatening illnesses (LTIs) live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families. Objectives: The purpose of this integrative review article is to explore factors that are associated with the use of CBPPC for U.S.

Families of children with disabilities or special healthcare needs report respite care as a great need, yet availability of such care is scarce. A partnership developed between a nursing school in the Southeast and a faith community, to provide respite care and summer camps, resulted in a win-win situation for families, children, interprofessional students and educators, the faith community, and volunteers. This article explains the need for respite, how schools of nursing and faith communities can partner, and the benefits to all stakeholders.

Objective: Low-income caregivers of young children with high-risk asthma experience social stressors and illness-related demands that may impede effective home asthma management. Knowledge of the caregiving experience in the context of poverty is limited. Methods: Convenience sampling methods were used to recruit low-income caregivers of children aged 7-12 years, who are frequently in the Emergency Room (ED) for uncontrolled asthma.

The article calls on hospitals to dedicate a space for family caregivers to relieve them from stress and loneliness when a family member is hospitalized. Burke Rehabilitation Hospital in White Plains, New York established the first caregiver resource center inside a rehab hospital. Several factors were cited by caregiver advocates that will convince hospitals to create caregiver centers, including the addition of penalties under the Affordable Care Act for avoidable readmissions.

Background: Although the extant literature identifies resistance to care (RTC) as one of the most frequently reported and impactful caregiver (CG) stressors, typical studies that rely on quantitative measures of RTC do not fully explain how and why RTC negatively influences CGs’ well-being. As such, it is difficult to develop specific intervention strategies to support CGs in dealing with RTC.

Introduction: Depressive symptoms, negative life changes, poor self-care, and higher caregiver burden are common in caregivers who assist individuals with heart failure (HF) in managing daily activities and disease-related symptoms. Previous research findings suggest social support, problem solving, and family function may influence these outcomes. However, the influence of these factors on outcomes in rural HF caregivers is unknown.

Anticipatory mourning is a phenomenon that has received limited attention. This study is a retrospective, qualitative study of caregivers' perception of this process. Twenty-two participants who had received services from Hospice were interviewed, and themes were identified that elucidate the essence of this phenomenon. Participants reveal what was helpful for them, thus providing insight into potential interventions to support care at the end of life.

Health care for individuals with disability is increasingly shifting from institutional settings to the "community," with assistance by those in the formal sector. In this article, the authors examine 5 case studies illustrating interactions and relationships between people with disability and their caregivers, using qualitative data collected as part of a community study of disability conducted in a medium-sized city in the northeastern United States.

Approximately 1,500 people a day die of cancer. Most are cared for by an informal caregiver. The purpose of this study was to identify the unmet spiritual needs of informal caregivers and explore the relationships between the patient's symptom distress, caregivers' unmet needs, and caregivers' depressive symptomatology at the time of admission to hospice. The sample consisted of 110 caregivers of hospice home care patients with cancer. The Spiritual Needs Inventory and Center for Epidemiological Studies Depression Scale were administered to caregivers of newly admitted patients.