Paediatric Palliative Care Pain Management in the Community
PARAMOUNT
End-of-Life Pain Management by Carers and Healthcare Professionals in Infants, Children and Young People in Out of Hospital Settings
1 other identifier
observational
68
1 country
1
Brief Summary
To describe the the barriers and facilitators experienced by carers and healthcare professionals when managing medicines for pain relief for infants, children, and young people approaching the end of life in out of hospital settings.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P25-P50 for all trials
Started Jul 2019
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
June 27, 2019
CompletedStudy Start
First participant enrolled
July 15, 2019
CompletedFirst Posted
Study publicly available on registry
August 19, 2020
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 31, 2020
CompletedStudy Completion
Last participant's last visit for all outcomes
January 31, 2021
CompletedAugust 19, 2020
August 1, 2020
1.5 years
June 27, 2019
August 18, 2020
Conditions
Outcome Measures
Primary Outcomes (1)
Qualitative data obtained from semi-structured interviews
Barriers and facilitators to managing pain in infants, children, and young people at end of life as reported by parents, caregivers, healthcare professionals and children and young people.
Baseline
Study Arms (3)
Parents
Qualitative interviews
Healthcare Professionals
Qualitative interviews
Children
Children and young people aged 6-18 years, Qualitative interviews
Interventions
Eligibility Criteria
Parents and carers of infants, children and young people at the end-of-life being cared for in the community, the healthcare professionals supporting them, and the children and young people who receive this care
You may qualify if:
- Carers of infants, children, and young people up to 18 years being cared for outside hospital at the end of life (defined as those patients who score as 'orange' or 'red' on the Spectrum of Palliative Care Needs tool and/or who have a symptom management plan (including pain management) written by a specialist palliative care team.
- Self-reported full or partial responsibility for managing the patient's medicines, in particular having to select PRN (pro re nata or 'taken as needed') for pain and being responsible for the clinical decision making and the physical process of administering medicines.
- Healthcare professionals in primary, secondary and tertiary care who are involved in the care of children at end-of-life (defined as those patients who score as 'orange' or 'red' on the Spectrum of Palliative Care Needs tool) outside hospital, some of whom may be caring for the families taking part.
- Children and young people aged 6-18 years who are being cared for outside hospital at the end of life defined as those patients who score as 'orange' or 'red' on the Spectrum of Palliative Care Needs tool).
You may not qualify if:
- Carers judged by consultants or nurses to lack capacity to consent.
- Carers judged by nurses to be 'struggling' too much (however, these carers will still be able to approach the researcher directly if they wish to take part as posters will be used to advertise the study).
- CYP judged by carers or nurses to lack capacity to take part in an interview, who are too unwell or those who might find it too distressing.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- University of Southamptonlead
- Great Ormond Street Hospital for Children NHS Foundation Trustcollaborator
- Alder Hey Children's NHS Foundation Trustcollaborator
- Helen & Douglas House Hospice, Oxford, UKcollaborator
- Rainbow Hospicecollaborator
Study Sites (1)
University of Southampton
Southampton, SO17 1BJ, United Kingdom
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Christina Liossi, PhD
University of Southampton
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- OTHER
- Time Perspective
- CROSS SECTIONAL
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
June 27, 2019
First Posted
August 19, 2020
Study Start
July 15, 2019
Primary Completion
December 31, 2020
Study Completion
January 31, 2021
Last Updated
August 19, 2020
Record last verified: 2020-08