Identification of the problems and needs after stroke

Every year, over 150,000 people in the UK have a stroke. More than 250,000 people live with disabilities caused by stroke – stroke is the single most common cause of disability. Very little is known about the experiences and preferences of patients and their families for those who die in the acute phase of stroke. We also want to find out the things that need to be done to help support the development of palliative care services in acute stroke services.

What are the aims of the study?

The main aim of the study is to identify the palliative care needs of patients in the acute phase of stroke (30 days after the stroke has occurrred), whether or not they are near the end of life.

The study also seeks to:

• Map the profile of care and service provision received by patients and their families, for those who die in the acute stage.
• Identify the experiences and preferences of patients and their families, for those who die in the acute stage.
• Document the clinical, professional and organisational factors likely to support the development of palliative care in acute stroke services.

Methods

Phase 1
190 patients who have had a stroke and been admitted to hospital in Sheffield (or a member of their family) will be asked to complete a questionnaire that will help us find out more about how they feel about their care. About 40 patients (or a member of their family) will be asked to take part in a short interview to explore these issues more deeply. With their consent, the case notes of all the 190 patients will also be examined.

Phase 2
Based on what we have found out in Phase 1, we will hold some discussion groups with members of Stroke Service staff and General Practitioners to see if we can identify things we could improve.

Data will be analysed using SPSS for quantitative data and NVivo for qualitative data.

What will be the study outcomes?

• Information about the palliative care needs of patients with acute stroke.
• An overview of the clinical, professional and organisational issues that affect the ability of the stroke team to support the provision of palliative care.
• Estimates of the demand and capacity that will inform recommendations for service development.

We will feedback results of the study to those participants who have expressed a wish to be informed.

We will present the findings of the study in written publications and at conferences and seminars.

Project start/end dates

March 2006-September 2007