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Paediatric end-of-life care at home
Signe Hoff Kobborg Larsen1, Inger Bording2, Margit Bjergegaard2
1Medical student, Aarhus University, Denmark.
Insights
Primary care nurses found a shared care model beneficial for supporting terminally ill children at home. This model improved nurses' preparedness in end-of-life care, cooperation, and emotional management.
Area of Science:
- Pediatric Nursing
- Palliative Care
- Healthcare Models
Background:
- Terminally ill children benefit from end-of-life care at home with family.
- Primary care nurses (PCNs) are essential for this care.
- A model for specialized pediatric palliative care teams (SPPCTs) supporting PCNs is lacking.
Purpose of the Study:
- To evaluate a shared care model between SPPCTs and PCNs in pediatric end-of-life care.
- To understand PCNs' perceptions of this collaborative model.
Main Methods:
- A 23-item questionnaire was administered to PCNs.
- The study involved PCNs caring for 14 terminally ill children.
- Descriptive statistics were used to analyze the data.
Main Results:
- 78.9% of nurses felt better prepared for a child's death after an introductory meeting.
- 70.6% reported improved cooperation with family members.
- 88.9% felt the model positively influenced their future involvement in pediatric palliative care.
Conclusions:
- The shared care model received positive evaluations from PCNs.
- Clear agreements and specialist support are vital for effective end-of-life care.
- Further research is needed to confirm if the model optimizes palliative care and family security.
Background:
A terminally ill child should have the possibility to be at home with their family during the end of life. Provision of care from primary care nurses (PCNs) is crucial, but no model exists on how specialised paediatric palliative care teams (SPPCTs) support the PCNs to perform this task.
Aim:
To investigate how PCNs evaluated a shared care model between a SPPCT and PCNs in paediatric end-of-life care.
Method:
A 23-item questionnaire was distributed to PCNs involved in care of 14 terminally ill children in November 2019 and January 2020. Descriptive statistics were used.
Findings:
A total of 20 questionnaires were returned from nurses who agreed/completely agreed that an introductory meeting made them better prepared (78.9%) to deal with the death of a child in their care, cooperating with family members (70.6%) and dealing with own emotions (73.7%). A total of 69.2% felt the meeting helped coping with parents' pressure and 88.9% stated that the trajectory changed how they saw themselves involved in future paediatric palliative care.
Conclusion:
The shared care model was evaluated positively. Clear agreements and specialist support were prerequisites for good trajectories at the end of life. Further research is needed to investigate if the shared care model optimises palliative care and security in relation to child and family.
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