Community nurses' participation in palliative care research: The Dignity Care Pathway

Background: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research. Aim: To plan and deliver a Young People’s Advisory Group in palliative care and health research at a secondary school. Findings: Attending an after-school ‘Health and Social Research Methods Club’ for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group. Conclusion: This project has equipped researchers with skills and provided a structured template for future Young People’s Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.

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Palliative care and complex chronic conditions since the perspective of healthcare professionals

European Journal of Public Health ◽

10.1093/eurpub/ckaa166.1095 ◽

2020 ◽

Vol 30 (Supplement_5) ◽

Author(s):

A Doñate-Martínez ◽

L Llop ◽

J Garcés

Keyword(s):

Primary Care ◽

Palliative Care ◽

Early Identification ◽

Chronic Conditions ◽

Healthcare Professionals ◽

Care Pathway ◽

Holistic View ◽

Complex Chronic Conditions ◽

Symptom Intensity

Abstract Background According to the WHO, palliative care (PC) is applicable early in the course of illness together with other curative therapies. Early PC has demonstrated beneficial effects on quality of life and symptom intensity among cancer patients. However, PC is not as early integrated on the care pathway of complex chronic conditions (CCC). This abstract presents barriers and needs identified to effectively implement early PC on CCC performed under the EU-funded InAdvance project (ref.: 825750). Methods Semi-structured interviews were performed with 16 healthcare professionals (HPs) from primary care and hospital settings working with older patients with CCC in Valencia (Spain). Results Interviews reported that main needs identified to provide early PC are: (a) coordinated strategies between multi-setting HPs to an early identification of CCC patients in need of PC; (b) adequate resources to attend patients' PC needs from a holistic view, i.e. psychosocial and spiritual needs; and (c) early integration of basic PC at primary care teams. The main barriers identified were: (a) stereotypes associated to the traditional PC approach; (b) poor knowledge from HPs of the PC holistic approach; and (c) lack of specific protocols or pathways for CCC in need of PC. Conclusions Specific skills and resources are the most relevant needs to effectively provide early PC among patients with CCC. First, it is urgent to demystify the negative culture-related vision of PC that is commonly associated to sedation and last days of a person's life. Also, multidisciplinary HPs require specific training to identify and provide early PC tailored to CCC. And, it is required a strategic and multi-setting organizational approach with fluent information flow and coordinated roles. Key messages Healthcare expenditure would be considerably reduced, especially at hospital and emergency units, with an early identification of patients with CCC in need of PC. Empowering primary HPs in PC would improve the quality of care of patients with CCC.

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