Paediatric Palliative Care Pain Management in the Community
- Conditions
- Palliative MedicinePediatric ALL
- Interventions
- Other: Qualitative study
- Registration Number
- NCT04519632
- Lead Sponsor
- University of Southampton
- 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.
- Detailed Description
This study aims 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.
The study plans 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. It is hoped that the guide will make carers feel more confident in managing pain relief safely, so lessening any worries. Future research is planned to show the value of the guide in a larger study.
Recruitment & Eligibility
- Status
- UNKNOWN
- Sex
- All
- Target Recruitment
- 68
Not provided
- 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.
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Arm && Interventions
Group Intervention Description Parents Qualitative study Qualitative interviews Healthcare Professionals Qualitative study Qualitative interviews Children Qualitative study Children and young people aged 6-18 years, Qualitative interviews
- Primary Outcome Measures
Name Time Method Qualitative data obtained from semi-structured interviews Baseline 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.
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (1)
University of Southampton
🇬🇧Southampton, United Kingdom