Staying just one step ahead: providing care for patients with motor neurone disease
MetadataShow full item record
This article has been accepted for publication in BMJ Supportive & Palliative Care following peer review and can also be viewed at <a href="http://spcare.bmj.com/">http://spcare.bmj.com/</a>
Introduction: There is limited information about the experiences and educational needs of health professionals who may be required to provide care for people with Motor Neurone Disease(MND) especially in the later stages of the disease. The aim of this study was to determine the experiences of, and need for, education of these health professionals. Methods: Interviews and focus groups were conducted with 31 health professionals with some experience in providing palliative care for people with MND. Thematic content analysis was used to identify common themes. Results: A key theme, Just One Step Ahead, emerged, that describes the central capability health professionals identified as necessary to help individuals plan and prepare for disease and lifestyle changes just before they arise. Two subthemes also emerged: Expertise in MND and Bespoke Communication. Expertise in MND described the required understanding of the disease and the particular individual’s version of the disease to allow the health professional to plan, advise, support and anticipate the needs of the person living with MND. Bespoke Communication was the facility to tailor care messages sensitively and effectively to the range of people involved in care (patients, family, healthcare team members).Conclusions: Care of people with MND requires up-to-date expertise about the disease and skilled communication abilities to manage complexity and change. Timely and focused education and specialist MND support for care providers are essential to tailored and responsive care and a widely available education programme has been developed to address these needs.
Showing items related by title, author, creator and subject.
The provision of physical health care by nurses to young people with first episode psychosis: A cross-sectional studyChee, G.; Wynaden, Dianne; Heslop, Karen (2018)© 2018 John Wiley & Sons Ltd What is known on the subject?: This paper addresses an identified gap in the international literatures related to physical health care of young people with first episode psychosis. Previous ...
A phenomenological study of the health-care related spiritual needs of multicultural Western AustraliansHawley, Georgina (2002)This study was designed to identify the spiritual needs of multicultural Australians with a health problem, in order to understand the educational implications for health care professionals. The rationale for the research ...
Implementation and evaluation of an education program to guide palliative care people with motor neurone disease.McConigley, Ruth; Aoun, Samar; Kristjanson, Linda; Colyer, S.; Deas, Kathleen; O'Connor, M.; Harris, R.; Currow, D.; Yates, P. (2011)Background: Despite a recognized need for a palliative approach to caring for people with motor neurone disease (MND), access to palliative care is often limited. Aim: This project aimed to improve the knowledge of health ...