Identifying Palliative and End of Life ResearchPriorities in Ireland: An Innovative Approach

Research output: Contribution to journalArticle

Abstract

Background: Palliative and end of life care research is anunderdeveloped research area. The importance of settingresearch priorities has been recognized internationally, howeverto date, this has largely been led by researchers andacademics. James Lind Alliance advocate an approach toresearch priority setting whereby patients, carers and clinicianswork together to agree the most important questions.Aim: To identify and prioritise research questions for palliativeand end of life care from the perspective of patients,carers and health care professionals in Ireland.Method: Mixed methods four stage approach.Stage 1: was part of a larger national study, whichinvolved a survey focused on uncertainties of care,(n=1403 responses), subsequently categorized as interventionalquestions, into a list of questions (n=83).Stage 2: An online survey asking user/carer organizationsand professional groups in Ireland to rate these questionsin terms of low to high priority (n=168 responses).Stage 3: Involved a final prioritization workshop, usingnominal group technique undertaken with user/carers (n=16),resulting in the identification of the top ten research priorityfor Ireland. Stage 4: Comprised a strategic workshop withacademics, researchers and funders from the island ofIreland, to develop action plans for each of the areas.Results: The top ten areas were identified and includeaspects such as co-ordination of care; out of hours; care athome; pain and symptom management, palliative care andnon-cancer and advanced care planning.Conclusions: This process enables researchers to demonstratethat their research is relevant, targeted and valuableto the people who most need it. We will report preliminaryfindings on the process and types of questions proposed.Discussion with key stakeholders contributes to better coordination,seeking to address the highest priority areastogether.
LanguageEnglish
JournalPalliative Medicine
Volume30
Issue number6
Early online date11 May 2016
DOIs
Publication statusE-pub ahead of print - 11 May 2016

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Ireland
Caregivers
Research
Terminal Care
Research Personnel
Education
Pain Management
Palliative Care
Islands
Uncertainty
Patient Care
Delivery of Health Care
Neoplasms
Surveys and Questionnaires

Keywords

  • palliative
  • end of life care
  • research priorities

Cite this

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title = "Identifying Palliative and End of Life ResearchPriorities in Ireland: An Innovative Approach",
abstract = "Background: Palliative and end of life care research is anunderdeveloped research area. The importance of settingresearch priorities has been recognized internationally, howeverto date, this has largely been led by researchers andacademics. James Lind Alliance advocate an approach toresearch priority setting whereby patients, carers and clinicianswork together to agree the most important questions.Aim: To identify and prioritise research questions for palliativeand end of life care from the perspective of patients,carers and health care professionals in Ireland.Method: Mixed methods four stage approach.Stage 1: was part of a larger national study, whichinvolved a survey focused on uncertainties of care,(n=1403 responses), subsequently categorized as interventionalquestions, into a list of questions (n=83).Stage 2: An online survey asking user/carer organizationsand professional groups in Ireland to rate these questionsin terms of low to high priority (n=168 responses).Stage 3: Involved a final prioritization workshop, usingnominal group technique undertaken with user/carers (n=16),resulting in the identification of the top ten research priorityfor Ireland. Stage 4: Comprised a strategic workshop withacademics, researchers and funders from the island ofIreland, to develop action plans for each of the areas.Results: The top ten areas were identified and includeaspects such as co-ordination of care; out of hours; care athome; pain and symptom management, palliative care andnon-cancer and advanced care planning.Conclusions: This process enables researchers to demonstratethat their research is relevant, targeted and valuableto the people who most need it. We will report preliminaryfindings on the process and types of questions proposed.Discussion with key stakeholders contributes to better coordination,seeking to address the highest priority areastogether.",
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N2 - Background: Palliative and end of life care research is anunderdeveloped research area. The importance of settingresearch priorities has been recognized internationally, howeverto date, this has largely been led by researchers andacademics. James Lind Alliance advocate an approach toresearch priority setting whereby patients, carers and clinicianswork together to agree the most important questions.Aim: To identify and prioritise research questions for palliativeand end of life care from the perspective of patients,carers and health care professionals in Ireland.Method: Mixed methods four stage approach.Stage 1: was part of a larger national study, whichinvolved a survey focused on uncertainties of care,(n=1403 responses), subsequently categorized as interventionalquestions, into a list of questions (n=83).Stage 2: An online survey asking user/carer organizationsand professional groups in Ireland to rate these questionsin terms of low to high priority (n=168 responses).Stage 3: Involved a final prioritization workshop, usingnominal group technique undertaken with user/carers (n=16),resulting in the identification of the top ten research priorityfor Ireland. Stage 4: Comprised a strategic workshop withacademics, researchers and funders from the island ofIreland, to develop action plans for each of the areas.Results: The top ten areas were identified and includeaspects such as co-ordination of care; out of hours; care athome; pain and symptom management, palliative care andnon-cancer and advanced care planning.Conclusions: This process enables researchers to demonstratethat their research is relevant, targeted and valuableto the people who most need it. We will report preliminaryfindings on the process and types of questions proposed.Discussion with key stakeholders contributes to better coordination,seeking to address the highest priority areastogether.

AB - Background: Palliative and end of life care research is anunderdeveloped research area. The importance of settingresearch priorities has been recognized internationally, howeverto date, this has largely been led by researchers andacademics. James Lind Alliance advocate an approach toresearch priority setting whereby patients, carers and clinicianswork together to agree the most important questions.Aim: To identify and prioritise research questions for palliativeand end of life care from the perspective of patients,carers and health care professionals in Ireland.Method: Mixed methods four stage approach.Stage 1: was part of a larger national study, whichinvolved a survey focused on uncertainties of care,(n=1403 responses), subsequently categorized as interventionalquestions, into a list of questions (n=83).Stage 2: An online survey asking user/carer organizationsand professional groups in Ireland to rate these questionsin terms of low to high priority (n=168 responses).Stage 3: Involved a final prioritization workshop, usingnominal group technique undertaken with user/carers (n=16),resulting in the identification of the top ten research priorityfor Ireland. Stage 4: Comprised a strategic workshop withacademics, researchers and funders from the island ofIreland, to develop action plans for each of the areas.Results: The top ten areas were identified and includeaspects such as co-ordination of care; out of hours; care athome; pain and symptom management, palliative care andnon-cancer and advanced care planning.Conclusions: This process enables researchers to demonstratethat their research is relevant, targeted and valuableto the people who most need it. We will report preliminaryfindings on the process and types of questions proposed.Discussion with key stakeholders contributes to better coordination,seeking to address the highest priority areastogether.

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