Education on palliative care for Parkinson patients: development of the "Best care for people with late-stage Parkinson's disease" curriculum toolkit.

BACKGROUND: Palliative care education among all stakeholders involved in the care of patients with late-stage Parkinson's disease is not adequate. In fact, there are many unmet educational and training needs as confirmed with a targeted, narrative literature review. METHODS: To address these needs we have developed the "Best Care for People with Late-Stage Parkinson's Disease" curriculum toolkit. The toolkit is based on recommendations and guidelines for training clinicians and other healthcare professionals involved in palliative care, educational material developed in recent research efforts for patients and caregivers with PD and consensus meetings of leading experts in the field. The final version of the proposed toolkit was drafted after an evaluation by external experts with an online survey, the feedback of which was statistically analysed with the chi-square test of independence to assess experts' views on the relevance and importance of the topics. A sentiment analysis was also done to complement statistics and assess the experts positive and negative sentiments for the curriculum topics based on their free text feedback. RESULTS: The toolkit is compliant with Kern's foundational framework for curriculum development, recently adapted to online learning. The statistical analysis of the online survey, aiming at toolkit evaluation from external experts (27 in total), confirms that all but one (nutrition in advanced Parkinson's disease) topics included, as well as their objectives and content, are highly relevant and useful. CONCLUSIONS: In this paper, the methods for the development of the toolkit, its stepwise evolution, as well as the toolkit implementation as a Massive Open Online Course (MOOC), are presented. The "Best Care for People with Late-Stage Parkinson' s disease" curriculum toolkit can provide high-quality and equitable education, delivered by an interdisciplinary team of educators. The toolkit can improve communication about palliative care in neurological conditions at international and multidisciplinary level. It can also offer continuing medical education for healthcare providers.

Spiritual care as an integrated approach to palliative care for patients with neurodegenerative diseases and their caregivers: a literature review.

A literature review of the PubMed and Web of Science was conducted to identify peerreviewed publications on this topic. Additional search was carried out using Google Scholar. This article reflects on the current state of art in spiritual care as an integrated palliative care approach for patients with neurodegenerative diseases and their caregivers. It proposes developing belief and value based care models for people with life-limiting conditions and their caregivers to prevent health related suffering.

A Pilgrim's Journey-When Parkinson's Disease Comes to an End in Nursing Homes.

Our interdisciplinary mixed-methods exploratory study was aimed at gaining empirical data on the medical and nursing demands of residents who are in a late stage of Parkinson Disease (PD) and are cared for in residential homes in Salzburg (Austria). In earlier studies it has been concluded that symptom burden of late stage PD patients is similar to or even higher compared with oncological patients. However, although all nine residents who took part in our study had severe limitations in performing their daily activities and experienced enormous restrictions in their mobility, they were quite content with their present living situations and did not show significant symptom burden. From the ethnographic family interviews that we conducted the following features emerged: a strong closeness in the family, an improved quality of life when the patients lived in the nursing home and fears about the future. Therefore, we concluded that living in a nursing home that provides for the needs of these patients is the best option for PD patients in the final stages of their disease as well as for their relatives.