The impact of social action services on end of life experience

INTERVENTION: 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. 2. Control group: patients are put on a 4 week waitlist before being given access to the volunteer‐provided social action services. CONDITION: Health services and delivery research ; Not Applicable PRIMARY OUTCOME: 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 OUTCOME: 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. 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.