Palliative medicine
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Palliative medicine · Jul 2013
ReviewTools to measure quality of life and carer burden in informal carers of heart failure patients: a narrative review.
Heart failure is a complex cardiac syndrome prevalent in an older population. Caring for heart failure patients through the disease trajectory presents physical and emotional challenges for informal carers. Carers have to deal with clinically unstable patients, the responsibility of managing and titrating medication according to symptoms and frequent admissions to acute care. These challenges compound the demands on caregivers' physical and psychosocial well-being. Alongside the negative impact of being a carer, positive aspects have also been demonstrated; carers describe feelings of shared responsibility of caring with professional carers and the reward of supporting a loved one, which creates a new role in their relationship. ⋯ This review highlights evidence that informal carers supporting patients with heart failure face many challenges impacting their physical and mental well-being. The studies described provide an insight into the individual dimensions that make a carer particularly vulnerable, namely, younger carers, female carers and carers with existing physical and emotional health issues. Additionally, there are external influences that increase risk of burden, including New York Heart Association Score status of the patient, if the patient has had recurrent emergency admissions or has recently been discharged home and the level of social support available to the carer. A further finding from conducting this review is that there are still limited measures of the positive aspects of caregiving.
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Palliative medicine · Jul 2013
Signs of post-traumatic stress disorder in caregivers following an expected death: a qualitative study.
Complications of grief are an important area of investigation with potential to improve the well-being of palliative care caregivers. There has been little study of the prevalence or significance of post-traumatic stress disorder for those bereaved after an expected death. ⋯ This exploratory study demonstrates the phenomenon of the 'shocked caregiver'. If trauma symptoms are present in bereaved carers in palliative care, it has implications for palliative care provision. Given that trauma symptoms may be distinct from prolonged grief disorder, this may also have implications for provision of bereavement counselling. Further research into this phenomenon is required.
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Palliative medicine · Jul 2013
A multicenter survey of Hispanic caregiver preferences for patient decision control in the United States and Latin America.
Understanding family caregivers' decisional role preferences is important for communication, quality of care, and patient and family satisfaction. The family caregiver has an important role in a patient's decisional role preferences. There are limited studies on family caregivers' preferences of the patient's decision control at the end of life among Hispanics. ⋯ Most Hispanic family caregivers preferred the patient to make shared decisions. Hispanic Latin American caregivers more frequently preferred patients to assume a passive decisional role. Acculturation did not influence the preferences of Hispanic American caregivers.
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Palliative medicine · Jul 2013
Informal hospice caregiver pain management concerns: a qualitative study.
Informal, unpaid, family caregivers provide much hospice care in the United States. These caregivers suffer physically, psychologically, emotionally, and socially from the burden of caring. The most often identified area of caregiver burden is the management of end-of-life pain. However, little empirical evidence exists of effective interventions to help caregivers manage end-of-life pain, and issues surrounding caregiver pain management remain vague and undefined. Understanding these concerns will inform the design of effective caregiver interventions. ⋯ This analysis clearly articulated and classified caregiver issues surrounding pain management. Future hospice research may benefit from the use of this analysis and framework in the development of tools to alleviate this major cause of caregiver burden.
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Palliative medicine · Jul 2013
Bereaved relatives' perspectives of the patient's oral intake towards the end of life: a qualitative study.
Patients approaching death often have a decreasing oral intake, which can be distressing for relatives. Little is known about the relatives' experiences with and perceptions of oral intake at the end of life. ⋯ This study revealed the complexity of meaning relatives' experiences with dying patients' decreasing oral intake. Their perceptions and concerns were related to their awareness of the imminent death. These findings can guide staff involved in care delivery to better support relatives.