Abstract
Introduction
Children’s palliative care strategic priorities, in both Northern Ireland (NI) and Ireland (ROI), emphasise providing the right care, at the right time, and in the right place. This includes Health and Social Care Professionals (HSCPs) actively involving parents in decision-making and planning location of end-of-life (EoL) care for their child. There is an absence of decision-making tools to assist parents and HSCPs in shared decision making about the place of EoL care for children. Further research on decision-making for place of EoL care is required.
Aims
To explore HSCPs experiences of EoL care for children in different settings, to understand what influences the decision-making process for place of EoL care, and to identify the current service models and supports available for families.
Design/Methods
A qualitative study design was employed. Up to three focus groups across the island of Ireland were conducted, with at least one in both NI and the ROI. HSCPs providing EoL care to children across hospice, hospital, and home settings were invited to participate. Qualitative data is being transcribed and analysed using a six-phase thematic analysis framework.
Results
Preliminary findings include: hospital not being the ideal place for death; families building relationships with hospice so it is seen as more than about death; difficulties in EoL conversations with parents who want to remain hopeful when curative / palliative care are delivered ; and home services challenging to provide, but HSCPs do their best out of goodwill.
Implications
The results will inform a future Delphi survey to further explore factors that influence decision-making processes on the place of EoL care for families, and inform the co-production of a decision-making framework for planning the place of EoL care for children, young people and their families on the island of Ireland.
Children’s palliative care strategic priorities, in both Northern Ireland (NI) and Ireland (ROI), emphasise providing the right care, at the right time, and in the right place. This includes Health and Social Care Professionals (HSCPs) actively involving parents in decision-making and planning location of end-of-life (EoL) care for their child. There is an absence of decision-making tools to assist parents and HSCPs in shared decision making about the place of EoL care for children. Further research on decision-making for place of EoL care is required.
Aims
To explore HSCPs experiences of EoL care for children in different settings, to understand what influences the decision-making process for place of EoL care, and to identify the current service models and supports available for families.
Design/Methods
A qualitative study design was employed. Up to three focus groups across the island of Ireland were conducted, with at least one in both NI and the ROI. HSCPs providing EoL care to children across hospice, hospital, and home settings were invited to participate. Qualitative data is being transcribed and analysed using a six-phase thematic analysis framework.
Results
Preliminary findings include: hospital not being the ideal place for death; families building relationships with hospice so it is seen as more than about death; difficulties in EoL conversations with parents who want to remain hopeful when curative / palliative care are delivered ; and home services challenging to provide, but HSCPs do their best out of goodwill.
Implications
The results will inform a future Delphi survey to further explore factors that influence decision-making processes on the place of EoL care for families, and inform the co-production of a decision-making framework for planning the place of EoL care for children, young people and their families on the island of Ireland.
| Original language | English |
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| Publication status | Published - 07 Dec 2023 |
| Event | All Ireland Institute of Hospice and Palliative Care (AIIHPC): 12th Annual Palliative Care Research Network Symposium - Ashling Hotel, Dublin, Ireland Duration: 07 Dec 2023 → 07 Dec 2023 |
Conference
| Conference | All Ireland Institute of Hospice and Palliative Care (AIIHPC): 12th Annual Palliative Care Research Network Symposium |
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| Abbreviated title | PCRN 2023 |
| Country/Territory | Ireland |
| City | Dublin |
| Period | 07/12/2023 → 07/12/2023 |