BACKGROUND: Many people receiving palliative care wish to die at home. Often, support from family or friends is key to ensuring that this wish is fulfilled. However, carers report feeling underprepared to undertake this role. This paper describes the process of developing a consensus and evidence based website to provide core information to help people support someone receiving palliative care on the island of Ireland.
METHODS: The project comprised three phases: (1) a review of systematic reviews facilitated the identification of core information needs; (2) content was developed in collaboration with a Virtual Reference Group (VRG) comprising patients, carers and professionals; and, (3) subject experts within the project team worked with a web developer to précis the agreed content and ensure it was in a format that was appropriate for a website. Members of the VRG were then invited to test and approve the website before it was made available to the general public.
RESULTS: Nineteen systematic reviews identified nine consensus areas of core information required by carers; a description of palliative care; prognosis and treatment of the condition; medication and pain management; personal care; specialist equipment; locally available support services; what to do in an emergency; nutrition; and, support for the carer. This information was shared with the VRG and used to develop website content.
CONCLUSIONS: We engaged with service users and professionals to develop an evidence-based website addressing the agreed core information needs of non-professional carers who wish to provide palliative care to a friend or relative.
BACKGROUND:: A key aspect to the provision of palliative care is maintaining the dignity of the individual being cared for. Nurses working in the community setting need knowledge and skills to meet the needs of individuals who need palliative care and their families. Dignity Care Intervention Ireland is a community-based pilot project designed to implement a dignity care intervention for individuals with a life-limiting condition living in their own home. As part of the overall intervention, an education programme was developed for nurses working in the community.
METHOD:: Completion of a locally-designed questionnaire pre- and post-education.
RESULTS:: Nurses working in the community setting welcomed and highly valued the Dignity Care Intervention Ireland education programme. There was an overall improvement in the understanding of palliative care for both groups and improved understanding of the principles of palliative care, with self-evaluated competence to apply these principles in daily clinical practice.
CONCLUSION:: The importance of education about palliative care to support the delivery of dignity-preserving care cannot be underestimated. Ensuring nurses have the requisite knowledge will enhance future practice development and subsequently improve care for patients with life-limiting conditions and their families.