Articles: caregivers.
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Children with medical complexity (MC) must rely on others to notice and address pain. Parents are aware of child pain behaviors and can serve as reliable proxy reporters. Thus, there is a critical need to understand parent perspectives to improve pain practices. ⋯ Parents in this study shared methods helpful to identifying pain in their children, as well as suggestions for discussing pain with caregivers. Priorities for future research include identifying methods for sharing pain information that are thorough, but do not burden parents or providers. Researchers should also determine how parents and caregivers can partner to identify and address pain in children with MC. Going forward, conversations about pain should be a key part of any admission assessment or first encounter. As pain episodes among children with MC can be complex and may not always be re-created in front of a provider, nurses may advise parents to take photos or videos to share with caregivers.
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Background: Little is known about how patients with incurable cancer and caregivers differ in their prognostic awareness, and the relationship between caregiver prognostic awareness and their psychological distress. Objective: To investigate prognostic awareness in caregivers of patients with incurable cancer and prognostic discordance in patient-caregiver dyads and its association with psychological distress. Design: This is a cross-sectional study. ⋯ In 11.6% of dyads (n = 34), patients reported the cancer as incurable while caregivers reported it as curable. Conclusions: More than half of caregivers have misperceptions about the patients' likelihood of cure, and one-third of patient-caregiver dyads have discordant perceptions. Supportive care interventions may facilitate conversations and enhance prognostic understanding in patients with incurable cancer and their caregivers.
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Alzheimer's disease (AD) exerts significant financial expenses on caregivers, and knowledge of caregivers' support for out-of-pocket payment is of great importance for policymaking on the insurance coverage of future AD medication in Taiwan. We aimed to investigate caregivers' willingness to pay (WTP) for a hypothetical curative AD medication and the effect of different factors on the amount of WTP. ⋯ Support for out-of-pocket WTP for a hypothetical curative AD medication was significantly related to caregiver's income.
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Palliative medicine · Apr 2021
Caring ahead: Mixed methods development of a questionnaire to measure caregiver preparedness for end-of-life with dementia.
Family caregivers of persons with dementia often feel unprepared for end-of-life and preparedness predicts caregiver outcomes in bereavement. Existing questionnaires assessing preparedness have limitations. A multi-dimensional questionnaire assessing family caregiver preparedness for the end-of-life of persons with dementia is needed to identify caregivers at risk for negative outcomes in bereavement and evaluate the quality of strategies within a palliative approach. ⋯ Family caregivers' feelings of preparedness for end-of-life need to be assessed and the quality of strategies within a palliative approach evaluated. Future psychometric testing of the Caring Ahead questionnaire will evaluate evidence for validity and reliability.
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Hydrocephalus is a disorder of cerebrospinal fluid dynamics, traditionally treated by placement of a ventricular shunt. Shunts are effective but imperfect as they fail in an unpredictable pattern, and the patient's well-being is dependent on adequate shunt function. The omnipresent threat of shunt failure along with the potential need for invasive investigations can be stressful for patients and caregivers. Our objective was to measure post-traumatic stress symptoms (PTSS) in children with hydrocephalus and their caregivers. ⋯ Results from this study suggest that post-traumatic stress affects caregivers with hydrocephalus, yet levels of resilience for caregivers and pediatric patients are low.