Development of an eHealth information resource for family carers supporting a person receiving palliative care on the island of Ireland

David Scott, Peter Hudson, Karen Charnley, Cathy Payne, Gareth Westcott

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Abstract

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.

Original languageEnglish
Pages (from-to)74
JournalBMC palliative care
Volume18
Issue number1
DOIs
Publication statusPublished - 30 Aug 2019

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Telemedicine
Palliative Care
Ireland
Islands
Caregivers
Consensus
Pain Management
Emotions
Emergencies
Equipment and Supplies

Cite this

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abstract = "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 pr{\'e}cis 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.",
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Development of an eHealth information resource for family carers supporting a person receiving palliative care on the island of Ireland. / Scott, David; Hudson, Peter; Charnley, Karen; Payne, Cathy; Westcott, Gareth.

In: BMC palliative care, Vol. 18, No. 1, 30.08.2019, p. 74.

Research output: Contribution to journalArticle

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