Health services and delivery research Not Applicable
Conditions
Interventions
1. Intervention group: patients are given access to volunteer-provided social action services at the end of life tailored to individual needs of patients e.g. befriending, social support straight away
Sponsors
Lancaster University
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Sites participating in this study will be selected as part of a government Cabinet Office funded initiative to support social action at the end of life in England. Twelve sites that provide these services will be shortlisted for interview. Selection considerations at shortlisting and interview will include the sites’ match to the tender, their capacity to deliver the proposed service, and their ability and willingness to contribute to the evaluation of these services. All sites will be made aware at interview that they are providing their services in the context of this study design (wait list RCT and case study evaluation). Patient inclusion criteria: 1. Those eligible to be referred to an end of life care service determined by the referring organisation/individual. They should be able to answer 'no' to the 'surprise question': ‘would you be surprised if the patient dies within a year?’ 2. Able to give informed consent Carer inclusion criteria 1. Those identified by participating patients as people who provide lay or unpaid support. These may be family, friends or other informal carers 2. Able to give informed consent Volunteer/staff inclusion criteria (for interview): 1. Those volunteering for a participating befriending service, and providing support to a trial participant (who was allocated to either trial arm) OR those working for a participating befriending service who are involved in the provision or management of these services 2. Able to give informed consent
Exclusion criteria
Exclusion criteria: Patient exclusion criteria: 1. Age <18 2. Those who only who only understand or speak a language in which our main outcome measure (the WHOQOL BREF) is unavailable. This is anticipated to be a very small number of potential participants as the WHOQOL BREF is available in a wide range of languages, including the main languages spoken in the participating sites 3. Those with an anticipated prognosis of <4 weeks Carer exclusion criteria: 1. Age <18 years 2. Those who only who only understand or speak a language in which our carer outcome measure is unavailable
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The World Health Organization Quality of Life (WHOQOL)-BREF questionnaire will be used at baseline, 4 weeks and 8 weeks in the intervention group. For the control group, the WHOQOL-BREF will be used at baseline, 4 weeks, 8 weeks and 12 weeks. | — |
Secondary
| Measure | Time frame |
|---|---|
| Taken at baseline, 4 weeks and 8 weeks in the intervention group. For the control group, the measures are taken at baseline, 4 weeks, 8 weeks and 12 weeks: 1. Loneliness is measured using the De John Greiveld 6-item Loneliness Scale, a short, well-used, reliable and valid measurement instrument for overall, emotional, and social loneliness, chosen for brevity and relevance of the items when mapped onto anticipated outcomes 2. Social Support is measured using the 8-item modified Medical Outcomes Study Social Support Survey (mMOS-SS), a short validated scale covering two domains (emotional and instrumental social support) designed to identify potentially modifiable social support deficits, chosen for brevity and relevance of the items when mapped onto anticipated outcomes 3. Carer Burden is measured using the Caregiver Burden Scale-End of Life Care (CBS-EOLC), a reliable and valid measurement tool designed to specifically assess family caregivers’ burden within the palliative care context, chosen for brevity and relevance of the items when mapped onto anticipated outcomes Social network (network size, number of confidante, number and percentage of relatives in network and number and type of main helpers) will also be measured as mediator/moderator (not outcome) using an adapted Hirsch matrix. Socio-demographic data (age, gender, disease diagnosis, education, marital status, living status, spirituality and ethnicity) in the form of a questionnaire will be collected from both patients and informal carers at baseline. | — |
Countries
England, United Kingdom
Contacts
Public ContactCatherine Walshe
Outcome results
None listed