International journal of palliative nursing
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Comparative Study
Palliative care and support for people with neurodegenerative conditions and their carers.
to identify and compare the needs for supportive care/palliative care services of people in Australia with Motor Neurone Disease (MND), Multiple Sclerosis (MS), Huntington's Disease (HD) and Parkinson's Disease (PD) and the needs of their carers. ⋯ patients and carers who received more tailored services and more palliative care services were the most satisfied. Therefore, results highlight the need for tailored and flexible models of care for these groups with unique care requirements.
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to explore the characteristics and views of the family carers of older people with heart failure. ⋯ carers were mainly older women, often experiencing multiple health conditions. Addressing the practical and emotional support required presents a challenge for specialist palliative care in responding to calls for increased involvement in heart failure. A shared care model with liaison between specialist heart failure nurses, cardiologists, primary care teams and hospice services is advocated.
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Community children's nursing services are well placed to provide palliative care for children and young people living with life-limiting conditions. The provision of home support can make a real difference to the quality of life for these families. Yet families report that services are fragmented and difficult to access. ⋯ The key worker role has been identified as advantageous in co-ordinating care. The community children's nursing team is in a prime position to take on this role. Best practice is achieved through an integrated approach to service provision.
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In the UK the clinical nurse specialist role (CNS) has evolved in an uncoordinated manner resulting in a broad job remit, with clinical, managerial, research and educational elements. CNSs working in specialist palliative care are expected to contribute to the delivery of education but many have received no formal training to support them in this aspect of their role. There has been limited research exploring the role the community palliative care CNS in providing education, making this study timely. ⋯ The CNS has a role in education. However for some CNSs, providing informal education rather than formal education may be appropriate. If the community palliative care CNS provides formal education, they require the knowledge and skills to deliver it effectively. The role of the CNS in palliative care education in the community should respond to personal, professional and local needs.