Abstract
Background: Children’s palliative care strategic priorities across the island of Ireland emphasise providing the right care, at the right time,
in the right place. This includes actively involving parents in decision-making and planning location of care for their child. The focus of this research was to
explore factors affecting bereaved parents’ decisions of the place of end-of-life (EoL) care for their child.
Methods: Using a qualitative study design, parents of a child with a life-limiting condition who died across hospital, home, or hospice settings within the
last 4 years, were recruited to take part in semi-structured interviews. Ethical approval was sought and obtained from all study sites. Data were transcribed
and analysed using thematic analysis.
Results: Twenty parents were interviewed across the island of Ireland. Four themes were identified: (1) Familiarity and freedom of home; (2) Safety and
security of hospital; (3) Homeliness and support of hospice; and (4) The child first and foremost. The themes arising give a deeper understanding into
parental decision-making regarding their child’s place of EoL care. Making such a decision was complex and emotionally challenging for all parents. Support,
information about potential choices, and timely guidance from health and social care professionals were crucial.
Conclusions: Communication with and support for parents were both areas that were highlighted as being important to parents when deciding on the
location of EoL care for their child. Key implications from this research confirm the need for additional training for those providing EoL care. The results from
this study will inform the co-production of a decision-making framework for planning the place of EoL care for children and young people.
This research is supported by the Higher Education Authority (HEA) North-South Research Programme, Shared-Island-Fund, on behalf of the Department of
Further and Higher Education, Research Innovation and Science.
in the right place. This includes actively involving parents in decision-making and planning location of care for their child. The focus of this research was to
explore factors affecting bereaved parents’ decisions of the place of end-of-life (EoL) care for their child.
Methods: Using a qualitative study design, parents of a child with a life-limiting condition who died across hospital, home, or hospice settings within the
last 4 years, were recruited to take part in semi-structured interviews. Ethical approval was sought and obtained from all study sites. Data were transcribed
and analysed using thematic analysis.
Results: Twenty parents were interviewed across the island of Ireland. Four themes were identified: (1) Familiarity and freedom of home; (2) Safety and
security of hospital; (3) Homeliness and support of hospice; and (4) The child first and foremost. The themes arising give a deeper understanding into
parental decision-making regarding their child’s place of EoL care. Making such a decision was complex and emotionally challenging for all parents. Support,
information about potential choices, and timely guidance from health and social care professionals were crucial.
Conclusions: Communication with and support for parents were both areas that were highlighted as being important to parents when deciding on the
location of EoL care for their child. Key implications from this research confirm the need for additional training for those providing EoL care. The results from
this study will inform the co-production of a decision-making framework for planning the place of EoL care for children and young people.
This research is supported by the Higher Education Authority (HEA) North-South Research Programme, Shared-Island-Fund, on behalf of the Department of
Further and Higher Education, Research Innovation and Science.
| Original language | English |
|---|---|
| Publication status | Published - 17 Oct 2024 |
| Event | 6th International Maruzza Congress on Paediatric Palliative Care - Auditorium Antonianum Viale Manzoni, 1 – 00185 – Rome, Rome, Italy Duration: 16 Oct 2024 → 18 Oct 2024 https://www.childrenpalliativecarecongress.org/congress-2024/ |
Conference
| Conference | 6th International Maruzza Congress on Paediatric Palliative Care |
|---|---|
| Abbreviated title | Maruzza |
| Country/Territory | Italy |
| City | Rome |
| Period | 16/10/2024 → 18/10/2024 |
| Internet address |