iLIVE Volunteer Study

University of Liverpool

Status: Completed

Conditions: Terminal Illness

Treatments: Other: Support from the hospital palliative and end of life care volunteer service (developed for this study).

Study type: Observational

Funder types: Other

Identifiers

NCT04678310

UoL001538 iLIVE Volunteer

Details and patient eligibility

About

The aim of this study is to develop and evaluate the implementation of an international volunteer training programme to support patients dying in the hospital setting and their families. It has the following objectives:

1. Explore the experience and perceptions of the international hospital palliative and end of life care volunteer programme, including care delivery, from the perspectives of:

   • Patients and their family members who receive the service
   • Volunteers who deliver the service
   • Health care professionals caring for patients who receive the service

2. Assess the implementation and impact of a hospital volunteer service for dying patients

Full description

An excess of 5 million people die in the EU each year, with 77% of deaths resulting from chronic disease and illness. Of these 4 million deaths, many people will have died in pain or symptomatic distress, died alone, and/or died without structured health or social care for the patient and/or their family. Volunteer support represents an important and necessary community resource to enhance the experience of living at the end of life, and dying, however, a Cochrane review in 2015 concluded: "research is needed on the impact of training and support for palliative care volunteers on patients, their families, volunteers and palliative care services". Palliative care volunteer services are relatively uncommon and empirical evidence of the usefulness of such services in the hospital setting remains scarce.

An EU H2020 funded study, iLIVE, will address this concern. The iLIVE Volunteer Study, one of 8 workpackages within the iLIVE project, has developed an international hospital palliative care volunteer training programme, to support the implementation of palliative care volunteer services within five hospitals in five countries. The study will evaluate the implementation, use and experience of the iLIVE Volunteer Service across the five countries, embedded within the current iLIVE Cohort Study (ClinicalTrials.giv reference number: NCT04271085).

Aim/Rationale:

The aim of this study is to develop and evaluate the implementation of an international volunteer training programme to support patients dying in the hospital setting and their families.

Objectives:

1. Explore the experience and perceptions of the international hospital palliative and end of life care volunteer programme, including care delivery, from the perspectives of:

   1. Patients and their family members who receive the service
   2. Volunteers who deliver the service
   3. Health care professionals caring for patients who receive the service

2. Assess the implementation and impact of a hospital volunteer service for dying patients

Enrollment: 105 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Patient is >18 years old;
• The patient has already been recruited to the iLIVE Cohort Study (fulfilling the eligibility criteria);
• The physician or clinical team estimates the patient's life expectancy to be one month or less, based on a modified version of the 'Surprise Question' "Would you be surprised if this patient would die within one month?"
• The physician or clinical team agrees that the patient is eligible for involvement of the hospital palliative care volunteer service.

Exclusion criteria

• Patient is <18 years old;
• The patient has not already been recruited to the iLIVE Cohort Study and does not fulfil the eligibility criteria;
• The physician or clinical team does not estimate the patient's life expectancy to be one month or less, based on a modified version of the 'Surprise Question' "Would you be surprised if this patient would die within one month?"
• The physician or clinical team do not agree that the patient is eligible for involvement of the hospital palliative care volunteer service.

Trial design

105 participants in 2 patient groups

Intervention Group

Description:

A patient will be assessed as 'eligible' for participation in the iLIVE Volunteer Study if they have an advanced, incurable illness that is unlikely to be cured, and they have been assessed by their clinical team as being in the last month of life. If patients meet this criteria, they will be offered support from the hospital palliative and end of life care volunteer service (developed for this study). Patients who agree to support will be recruited to the 'Intervention Group'.

Treatment:

Other: Support from the hospital palliative and end of life care volunteer service (developed for this study).

Case Control Comparison Group

Description:

If a patient is 'eligible' to receive support from the hospital palliative and end of life care volunteer service (see 'Intervention Group'), but declines involvement, they will be approached for inclusion in the study, as part of the 'Case Control Comparison' group for comparative analysis to assess the 'impact' of the volunteer service.