Managing Medicines for patients with serious illness being cared for at home

Project Duration

1 March 2017 - 31 August 2019

Aim

To explore how seriously ill patients, their family care givers, friends (FCGs) and the health care professionals who support them, engage collaboratively in managing medicines prescribed for relief of symptoms at the end of life and provide evidence from a detailed study of barriers, facilitators, information and training needs for the improved support at home of terminally ill people and their families.

Objectives

• To explore how patients, family care givers and friends (FCGs), particularly from minority, under-served and hard to reach groups (MHRG) (e.g. Black, Asian and Minority Ethnic groups, the economically disadvantaged, and those affected by severe mental health problems), manage medicines prescribed for patients with serious and terminal illness being cared for and dying at home.

• To compare and contrast the experience of symptom control and FCG involvement in medicines management for patients who have been referred to specialist palliative care services and those who have not.

• To establish what further support, information and training family care givers and health care professionals need to feel confident in managing medicines, including those for end of life care, for patients being cared for and dying at home.

• To explore lay and professional stakeholder perspectives (including those of GPs, community pharmacists and nurses) about how community pharmacists (CPs) could be better integrated into the network of care and support for families and professionals in medicines management and end of life care.
• To use the knowledge gained, from the perspective of all stakeholders, to make empirically founded recommendations for service development and effective commissioning in relation to medicines management to improve the care and experience of patients being cared for and dying at home and their family care givers.

Methods

This is a two and a half year study set in the East Midlands, UK. We will access purposive samples of participants recruited through general practices, community and hospital palliative care services, and hospices in Nottinghamshire and Leicestershire. The study will be undertaken in three phases:

• Interviews (n=40) with 20 bereaved family care givers and 20 health care professionals with experience of managing end of life medicines for patients being cared for and dying at home.
• Longitudinal family case studies with 20 family care givers, patients (where possible), and health care professionals to understand the issues from different perspectives. Baseline and follow-up Interviews will take place over approximately 3 months. Observation will be carried out of how family care givers, patients and health care professionals discuss medicines and medicine taking to enable an understanding of how communication and decision making occurs. With permission we will also review patient’s medical records to establish what medicines have been prescribed and used.
• Workshops will take place in Nottingham and Leicester to bring together a range of stakeholders to review the findings and suggest how improvements in the management of medicine for patients being cared for and dying at home may be applied in practice, including future training and educational resources for professionals and family care givers.

Stage of Development

Recruitment to the study began in August 2017 and is proceeding well. We have almost completed the interviews with health professionals and are now targeting specific occupational groups in order to complete a variable spread across the health professions. Recruitment of bereaved family/friend carers continues to be steady with potential participants being identified by a range of partners across the cities and counties of Leicester and Nottingham. Participants, including patients, family members and friends, have also been recruited to several longitudinal, family-centred case studies.

Our aim is to include a wide range of stakeholder perspectives in each strand of the study, representing experience of different kinds of illness conditions, including cancer, COPD, dementia, Parkinson’s Disease. We are also keen to include patient and carer participants from minority, diverse and hard to reach groups, including from BAME communities, and those affected by serious mental illness. 

It is anticipated that data collection will continue until March 2019.