A study funded by Marie Curie and Dimbleby Cancer Care published today shows the potential benefits of a new nurse-led intervention in supporting carers to manage pain medication in people with terminal cancer.1
Researchers from the University of Southampton, Cardiff University and University of Leeds have developed a nurse-led intervention to help carers with medication management, and evaluated its use in routine practice.
The Cancer Carers' Medicines Management (CCMM) intervention addresses carers' beliefs, knowledge and skills and promotes self-evaluation of competence. It centres on a structured conversational process between a nurse and carer.
It is the first time that a study has attempted to integrate an intervention developed using input from carers and nurses into routine palliative care.
The research showed that the CCMM intervention compared favourably with current practice as it offered a more systematic and comprehensive approach to supporting carer management of pain medicines.
Researchers noted that nurses particularly valued the toolkit resource - which included information about opioids and simple charts for documenting pain and medication, because they were of immediate practical value to carers.
The findings also identified some positive changes in medicines management, such as increased acceptance of the need for opiates, and behavioural changes, responding more readily to patients' request for pain relief and improved systems in place for giving and recording medicines.
Many people with advanced cancer experience persistent pain and are typically prescribed analgesics, including opioids. Carers often help patients to manage pain medicines, especially near the end of life, but often do not receive the support they need.
Professor Sue Latter, the lead researcher from the University of Southampton, said: "Despite the heavy burden placed on carers to help manage pain medication at home, there is a real lack of reliable research on effective methods of supporting carers with medicines management.
"Medication management requires knowledge and practical skill, and involves carers in monitoring and interpreting symptoms, as well as selecting, administering and evaluating the effectiveness of medicines. Often, carers will not have trainingfor their role and will have preconceived views about pain and analgesics, particularly opioids."
Professor Jane Hopkinson from Cardiff University, and co-author, said: "Cancer Carers' Medicines Management made clinical sense to nurses, who recognised the challenges faced by carers managing analgesics at the end of life and saw potential benefits in improving education and support."
Most studies conclude that healthcare professionals need to provide carers with more information, training and continuing support.
Dee Sissons, Director of Nursing at Marie Curie, said: "The responsibility of taking on a caring role for someone who is terminally ill can be immensely rewarding, but also daunting. Family carers play a critical role in supporting people with a terminal illness so they can be cared for and die at home when this is their wish.
This new study shows that nurses and carers can work together to better manage pain medication at home and enable carers to respond more readily to their loved ones request for pain relief with greater confidence."
The nurses who participated in the study also provided feedback on how to use the intervention more widely in palliative care nursing practice. Their suggestions included: involving patients with other terminal illnesses, including other 'end of life care' medication and introducing it earlier in the course of a patient's illness, which could increase benefits to carers.
The study results have informed further NIHR funded research on nurses supporting self-management of medicines at the end of life.
The research published in Palliative Medicine was funded by the Dimbleby Marie Curie Research Fund.
Notes to editors
1 Supporting family caregivers to manage pain medication in cancer patients at end of life: a feasibility trial - Palliative Medicine
The link for the paper is: http://journals.sagepub.com/doi/full/10.1177/0269216317715197
A two arm, parallel group, randomised controlled feasibility trial of CCMM was conducted at two sites, in South Wales and southern England.
In South Wales health board-employed district nurses had generic caseloads that included patients with palliative care needs and in southern England two independent hospice palliative care providers employed nurse specialists to work in the community. These contrasting models are typical of nurse-delivered end of life care in the UK and were chosen to assess feasibility issued associated with each.
Marie Curie - care and support through terminal illness
Marie Curie is the UK's leading charity for people with any terminal illness. The charity helps people living with a terminal illness and their families make the most of the time they have together by delivering expert hands-on care, emotional support, research and guidance. Marie Curie employs more than 2,700 nurses, doctors and other healthcare professionals, and with its nine hospices around the UK, is the largest provider of hospice beds outside the NHS.
Call the Marie Curie Support Line on 0800 090 2309 for free confidential support and practical information on all aspects of terminal illness.
Dimbleby Cancer Care provides practical and psychological support for people in South East London living with cancer, their families and carers. The charity was set up in 1966 in memory of renowned broadcaster Richard Dimbleby and is based at Guy's Cancer Centre in London and at the Dimbleby Macmillan Support Centre at Queen Mary's Sidcup. Its mission is to raise money to continue its commitment to support and expand the Dimbleby Cancer Care Information and Support Services which includes drop-in information centres, Welfare Benefits advice, psychological support, complementary therapies and the provision of Dimbleby pillows for cancer patients. The charity is also developing a website resource to help people find care and support services nearest to them. In addition, the Dimbleby Cancer Care Research Fund has awarded over £2.5million in research funding to projects looking at all aspects of cancer care. http://www.dimblebycancercare.org
The University of Southampton drives original thinking, turns knowledge into action and impact, and creates solutions to the world's challenges. We are among the top one per cent of institutions globally. Our academics are leaders in their fields, forging links with high-profile international businesses and organisations, and inspiring a 24,000-strong community of exceptional students, from over 135 countries worldwide. Through our high-quality education, the University helps students on a journey of discovery to realise their potential and join our global network of over 200,000 alumni. http://www.southampton.ac.uk
Cardiff University is recognised in independent government assessments as one of Britain's leading teaching and research universities and is a member of the Russell Group of the UK's most research intensive universities. The 2014 Research Excellence Framework ranked the University 5th in the UK for research excellence. Among its academic staff are two Nobel Laureates, including the winner of the 2007 Nobel Prize for Medicine, Professor Sir Martin Evans. Founded by Royal Charter in 1883, today the University combines impressive modern facilities and a dynamic approach to teaching and research. The University's breadth of expertise encompasses: the College of Arts, Humanities and Social Sciences; the College of Biomedical and Life Sciences; and the College of Physical Sciences and Engineering, along with a longstanding commitment to lifelong learning. Cardiff's flagship Research Institutes are offering radical new approaches to pressing global problems.http://www.cardiff.ac.uk
The University of Leeds is one of the largest higher education institutions in the UK, with more than 33,000 students from 147 different countries, and a member of the Russell Group of research-intensive universities.
We are a top 10 university for research and impact power in the UK, according to the 2014 Research Excellence Framework and we are The Times and The Sunday Times University of the Year 2017. Additionally, the University has been awarded a gold rating by the Government's Teaching Excellence Framework recognising its 'consistently outstanding' teaching and learning provision. http://www.leeds.ac.uk
Palliative Medicine is a highly ranked, peer reviewed scholarly journal dedicated to improving knowledge and clinical practice in the palliative care of patients with far advanced disease. It reflects the multidisciplinary approach that is the hallmark of effective palliative care. http://journals.sagepub.com/home/pmj