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BuildCARE

The International Access, Rights and Empowerment study (IARE)

The International Access, Rights and Empowerment (IARE) study wants to better understand the needs of patients aged 65 and over who have received palliative care for cancer and non-cancer conditions, and their families. This knowledge will be used to help improve access to these valuable services for this group.

Where is the study taking place?

The IARE study, which is part of the BuildCARE project, is an international study and is being carried out in four different cities where palliative care is given differently. All of these cities have ageing populations that will pose challenges to the healthcare system in the future. These cities are:

Aims of our study

In each city the study is split into 3 components of work so that we can gain a full picture of people’s experiences and needs:

Component 1 - Patient survey

Aims to find out more about who gets palliative care, what their needs are and what they would like, and what does and doesn’t help with accessing palliative care.

What are we doing?

In this part of the study we are surveying patients who have received palliative care to find out more about who gets palliative care, what their needs are and what they would like, and what does and doesn’t help with accessing palliative care. For more information, please see the Patient Information Leaflet (PDF, 684kb).

IARE-Component1-Diagram

Progress to date

Recruitment has now closed and we are in the analysis phase. The following numbers of patients were were surveyed in this part of the study:

 

 

Number of patients

London

81

New York City

35

Dublin

80

How can I get involved?

 

Recruitment has now closed and we are in the analysis phase. We look forward to sharing our findings with you shortly!

 

Component 2 - Patient, carer & staff interviews and hospital observation

Aims to find out what helps and what blocks access to specialist palliative care. We also wish to find out what helps empower patients receiving palliative care.

What are we doing?

In this part of the study we want to find out what helps and what blocks access to specialist palliative care. We also want to find out what helps empower palliative care patients.

To gather this information we are interviewing patients, carers and hospital staff in each city. We are also conducting observation in the hospital and community environment where patients receive palliative care.

Resources

Progress to date

Recruitment has now closed and we are in the analysis phase. The following numbers of patients, carers and hospital staff (specialist palliative care clinicians and non-specialist palliative care clinicians) were interviewed in this part of the study:

 

Number of patients

Number of carers

Number of specialist palliative care clinicians

Number of non-specialist palliative care clinicians

London

10

10

5

5

Dublin

10

11

5

6

San Francisco

6

11

5

7

In addition, we completed many hours of observation at each site, which included shadowing palliative care and non-specialist palliative care clinicians.

How can I get involved?

Recruitment has now closed and we are in the analysis phase. We look forward to sharing our findings with you shortly!

Component 3 - Postal survey for bereaved carers

Aims to help improve services for patients and to better support carers before and after the death of their relative or friend.

What are we doing?

Participants will be asked to self-complete a postal questionnaire with questions about the services and the care received by their relative or friend in the last months before death and whether needs and preferences were fully met. The questionnaire also includes questions about the ways in which their relative or friend’s death may have affected the participants.

This information will be used to help us improve services for patients and to better support carers before and after the death of a relative or friend.

Progress to date

Recruitment has now closed and we are in the analysis phase. The following numbers of carers were surveyed in this part of the study:

 

Number of patients

London

248

New York City

131

Dublin

237

San Francisco

110

We are very grateful to all the people who, having recently lost a relative or friend, have taken part by completing the survey.

How can I get involved?

 

Recruitment has now closed and we are in the analysis phase. We look forward to sharing our findings with you shortly!

Further information

Meet the London team
To hospital clinicians, GPs and local care services

It is likely that some patients, relatives or friends who we invite to participate in the IARE study will want to discuss the opportunity with their GP or another health professional they are in touch with, for example from palliative care and bereavement support services. If you find that you require any further information about this study, please contact us on 020 848 5143.

The IARE study can give no clinical advice to participants. However we provide a leaflet (produced by the Royal College of Psychiatrists) with information about bereavement and sources of support if people wish to find out more about this.

If participants express any worries about their health we will suggest to them that they discuss this matter with their GP or other local services, as appropriate.

Patient & public involvement

We welcome your involvement in the IARE study; for example, in helping us promote what our study is about to others and write a lay summary of findings. You may have your own ideas too. Please contact the research team on 020 7848 5143.

Bereavement and sources of support

Dealing with the loss of a loved one is not easy. Bereavement can be a distressing experience and remembering the last months of life of a relative or friend takes up time and energy. Writing or talking about it may help but it may also bring back painful memories.

The Royal College of Psychiatrists has produced a leaflet with clear and well-researched information for anyone who has been bereaved, their family and friends, and anyone else who wants to learn more about bereavement. In this leaflet you will find information about:

  • How people normally grieve after a loss
  • Unresolved grief
  • Places to get help
  • Other sources of information
  • How friends and relatives can help

More information and translations into Chinese, Urdu, Hindu and Spanish are available through the Royal College of Psychiatrist’s website.

Contact us

You can phone the research team on 020 7848 5143.

Alternatively please write to:

Dr Barbara Daveson or Melinda Smith
Department of Palliative Care, Policy & Rehabilitation
Cicely Saunders Institute
Bessemer Road
London SE5 9PJ
Email: Barbara.daveson@kcl.ac.uk or Melinda.smith@kcl.ac.uk

 

 

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