Articles: caregivers.
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Caregiver health literacy (HL) in patients' transition from hospital to home care is an important factor for good results. ⋯ Key findings showed that caregivers with higher HL were typically younger, male, better educated, and more likely to be healthcare professionals. These caregivers managed patients with lower dependence on daily activities, while those with lower HL, mainly females, cared for patients with higher dependence. The study highlights the need for targeted interventions and public policies to enhance HL among caregivers, particularly to improve outcomes for patients with complex needs.
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Randomized Controlled Trial
An investigation of the effect of the universal model of family-centered care on patient and family outcomes in patients under home invasive mechanical ventilation.
The number of patients under home mechanical ventilation is increasing worldwide. The unique nature of these patients and their complex health needs exposes home caregivers to various needs and challenges regarding different dimensions of care. ⋯ Given the significant impact of the universal model of family-centered care on the clinical outcomes of the patient and the family, pre-discharge training and its post-discharge follow-up and continuity of education with an active presence of nurses, as one of the main pillars of the treatment, seems essential.
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Having a family member hospitalized in the intensive care unit (ICU) can be a stressful experience for family members, encompassing both psychological and spiritual distress. With over 5 million ICU admissions annually in the United States, it is imperative to enhance the experiences and coping mechanisms of ICU family members. In particularly challenging situations, some family members even face psychological effects known as post-intensive care syndrome-family, which includes anxiety, depression, and posttraumatic stress. ⋯ This affects both their ICU experience, decision making, and outcomes for the patient and family. This process is also affected by characteristics of the family such as race, ethnicity, and economic status. This model helps identify gaps in research, including the need for randomized trials of spiritual care that identify mechanisms underlying outcomes and demonstrate impact of spiritual care, and consider race, ethnicity, and other characteristics.
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J Pain Symptom Manage · Oct 2024
The Home-Based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of Psychometric Properties.
Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the provision and quality of home-based PPHC in the U.S. Ensuring equitable, high-quality home-based PPHC for all children requires the evaluation of families' care experiences and assessment of whether these experiences are aligned with their needs and priorities. ⋯ The EXPERIENCE Measure is a tool with evidence for reliable and valid scores to evaluate family-reported home-based PPHC experiences at the time care is being received. Future work will evaluate the usability (i.e., acceptability, feasibility, and clinical actionability) of EXPERIENCE, including the sensitivity of the instrument to change over time and its impact on real-time clinical actions.
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Approximately 95% of children treated in emergency departments (EDs) in Alberta, Canada, are discharged home. Discharge teaching is an opportunity to provide caregivers with the information that they need to manage their child's condition at home and ensure appropriate follow-up. Our ED lacked a standard discharge instruction process. In preparation for local quality improvement, we sought to understand caregiver preferences regarding discharge instructions by assessing the preferred format, need for translated resources, and ability to effectively access electronic information using a Quick Response (QR) code. ⋯ Caregivers had a strong preference for receiving written discharge instructions, with electronic or paper formats preferred equally. Translated resources will be important for some families. QR codes may be an effective tool for distributing electronic resources to most but not all families.