PARAMOUNT
Research type
Research Study
Full title
End-of-Life pain management by carers and healthcare professionals in infants, children and young people in out of hospital settings
IRAS ID
262102
Contact name
Christina Liossi
Contact email
Duration of Study in the UK
0 years, 9 months, 28 days
Research summary
Research Summary
We would like to hear about the experiences of patients, carers and healthcare professionals when managing pain relief medicines for infants, children and young people (ICYP) at the end of their lives, when they are not in hospital. We plan to develop a guide to help educate and empower both carers and healthcare professionals in the best ways to manage pain in this group of patients. This guide will contain basic, easily understood information depending upon both the patient’s and carers’ needs.
Family carers are important in looking after their ICYP with life-threatening illnesses, so they can be cared for at home if they wish. Even with varying levels of support from hospice, hospital or family doctors, such responsibility can be rewarding and scary. Community based healthcare professionals often have little experience to be able to support good end of life pain care in these patients when at home and there may be problems which prevent them from giving effective treatment. If pain and other symptoms are not well controlled by medicines families often move from their chosen place of care. Carers need to be able to check symptoms to decide which medicines to give and how well they are working, without having any special training; some may have unhelpful views about medicines such as morphine. Not much research has looked at the problems that carers and healthcare professionals come across when trying to manage a child’s pain when they are not in hospital.
Research has already shown that being able to provide the right medicine at the right time means children can be looked after where they want, without unnecessary hospital admissions. We hope the guide will make carers feel more confident in managing pain relief safely, so lessening any worries. In the future we hope to show the value of the guide in a larger study.
Summary of Results
Family caregivers play a critical role in supporting infants, children and young people with life-threatening or life-limiting illnesses so they can be cared for and die at home if they wish. Pain is common in these illnesses but managing this at home can be difficult. Caregivers may not have the special skills and confidence to decide which treatments to give. They may also struggle to balance complicated pain relief medications and side effects. Many community-based healthcare professionals do not have enough experience to support good pain management.
If pain is not well controlled, families often move their child to a hospital or hospice. Very little research has looked at the problems that caregivers and healthcare professionals face when trying to manage a child’s pain at home. To investigate this, Professor Christina Liossi, head of the Pain Research Lab at the University of Southampton, was awarded a grant by Great Ormond Street Hospital Charity to run the PARAMOUNT project. The project ran from January 2019 to September 2021. The extended team included three parent/caregiver representatives, psychology researchers and healthcare professionals.
Professor Liossi and her team completed the following for the PARAMOUNT project:
1. A systematic review of the research on this topic. The review protocol is published here [https://eur03.safelinks.protection.outlook.com/?url=http%3A%2F%2Furl6570.hra.nhs.uk%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbYLcu6Wa5jZlZ-2Fw7JrIX24fZLoVOCEb38xkVyCVqdfDPvlF0Dl4q5FDss8fE4M-2FaOw-3D-3D0ykr_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YJjOXdRh2WSiOQ7Z3wdy1E-2BOkBV8nmT0B3vfPaS5lFs5y6fp-2B5r30R3YqlWdbj7Z0aWWmV5-2BAQijRTEQCXN07o4bEoS3MX8SnsP9ln1bPAmgXmCS0wJd8c5160yyIOTsYx1OcoUlJ-2Bp2UdZ-2Fk9XYhL82nguuaizIyGG57Sbmz6FfA-3D-3D&data=04%7C01%7Capprovals%40hra.nhs.uk%7C77701d04ac4342dd7aa008d9f77952ed%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C637812922716112164%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=bKRNMueRBfcjAy0cwXNzJ6EKqDgAjYM8txzpeBxpLaI%3D&reserved=0] and the completed review is published here [https://eur03.safelinks.protection.outlook.com/?url=http%3A%2F%2Furl6570.hra.nhs.uk%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbUDusdECazRYlSZVNJulVTaq5uIYIfIvs4iZyOl7s-2Bc-2BdptBSCnZ4Wr8r3KGI91KWrSRmxVuZlG89BJWKn5WZ4w-3D4dzH_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YJjOXdRh2WSiOQ7Z3wdy1E-2BjEAFBgDDMX8MzIVbHTgNeHtBUsX9SoHSfa0lG04raiH9eT91MTrLpX-2B1KLBcP9dp5yQOU-2FOSIFLVRQwyDbBRbAo-2FzTFDKXKlqkd8GCU3bMwJp4lnf5v2FKFnbd1kTAps2jRUTvTXVIiWoexIOtSPow-3D-3D&data=04%7C01%7Capprovals%40hra.nhs.uk%7C77701d04ac4342dd7aa008d9f77952ed%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C637812922716112164%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=aHweKpt3bgxFSBFUz%2FKey6jprYQrqkgGa%2BD%2FuhTVJ0o%3D&reserved=0]
2. Interviews with 25 family caregivers and 29 healthcare professionals who manage pain in children with life-limiting/life-threatening conditions at home in England. The participants were recruited from 8 healthcare sites including hospices and hospitals. The findings from the interviews with healthcare professionals are published here: [https://eur03.safelinks.protection.outlook.com/?url=http%3A%2F%2Furl6570.hra.nhs.uk%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbfBkV8STyx-2BNg3HoA191NasM0GzXDgROx2PPWQJTYTZmvb23xvkJKkQ0-2B1A1l6HcC8c-2Fh5TJPCr8Icg0flISk0yXQUGzLsOfF2OaT1UhD-2FW4fq8aILe5S2rh32OtMrkQqB09vYveTrVEGONPnnzBeBKlKBkI90wROMKBEjytUd4Lr36bEq4vanzF1CtgmugG65kf6Wk9b5-2BIYgcpXGrHwqL1gVT-2BS4YeRiFWGcuFQUQxsw52_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YJjOXdRh2WSiOQ7Z3wdy1E-2BegQ89uLujFqfr4-2F7DoSxFaEXglfs52XKSr3H2xFbroo9DFjvXP2fvv4cgIxhZ8s8DvHCYukGiUBTI7YCdMl0t6K-2FPw9XyVyJpFzd06-2Br6-2BziYCxzuiKyee5l-2FDMpWx6JTKrDre-2BdD-2FQLHbZIIljNlw-3D-3D&data=04%7C01%7Capprovals%40hra.nhs.uk%7C77701d04ac4342dd7aa008d9f77952ed%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C637812922716112164%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=XDR%2BoObiGyiqL1LQ%2BDnk%2BZJrGO5aDL%2F2u710lU0WZ%2Bk%3D&reserved=0] . The team are currently writing up findings from the family caregiver interviews.
3. Using the findings from parts 1 and 2, the team co-produced an eBook with parents and healthcare professionals. The eBook aims to support and empower caregivers to manage pain in children. It includes information and guidance on what pain is, how to assess it and how it can be managed using medicines and physical and psychological interventions. The eBook contains information and guidance on the relationship between pain and sleep; how caregivers can look after themselves; and parenting a child with a life-limiting/life-threatening condition. It includes an interview with a parent as well as resources to help parents work in partnership with healthcare teams and schools, and to assess and record pain and medication.
Next, the team are applying for funding for a project to develop an eLearning module, website and conference for healthcare professionals to help them to introduce and use the eBook with family caregivers. We thank all the caregivers, healthcare professionals and parent/caregiver representatives who gave up their time to be involved in the PARAMOUNT project. If you would like to hear about updates or are interested in being involved in future projects, please contact paramount@soton.ac.uk.REC name
London - Bloomsbury Research Ethics Committee
REC reference
19/LO/0783
Date of REC Opinion
2 Aug 2019
REC opinion
Further Information Favourable Opinion