'To wait or not to wait':lessons from running a wait-list controlled trial (ELSA) of a volunteer befriending service at the end of life within NHS, hospice and voluntary sectors

Background: Many innovations in palliative care are implemented without robust understanding of their effect. Trials are underused as they can be considered ethically and pragmatically challenging. Wait-list designs show promise as they enable all participants to receive the intervention, but with the rigour of a controlled trial. Aim: To provide recommendations on running wait-list trials in partnership with lay researchers within the hospice and voluntary sectors. Methods: A wait-list controlled trial testing volunteer delivered social action befriending services across 11 hospice, charity and NHS sites. Many non-clinical staff are responsible for site trial management and informed consent procedures, prepared with innovative face to face role play workshops. Participants are estimated to be in their last year of life, randomly allocated to receive the befriending intervention immediately or after a four week wait. Data collection at baseline, 4, 8 weeks: WHO QOL BREF, Loneliness scale, mMOS-SS, social networks. Intention to treat analysis includes fitting a linear mixed effect model to each outcome variable at 4, 8 and 12 weeks. ISRCTN 12929812 Results: Participants (currently n=117, recruitment commenced 6/15, completes 12/15) are currently at all trial stages. Methodological challenges centre on ‘the wait’. Initiation issues include acknowledging site staff design concerns and involving them in developing the protocol and documentation. Ongoing ‘wait’ issues involve providing support to address informed consent concerns and understanding trial procedures, addressing disappointment of ‘the wait’ allocation, allocating volunteers in a timely fashion, and the impact this has on understanding effect for this design. Conclusions: It is possible to run a rigorous and ethical wait-list trial in partnership with non-clinical site staff and volunteers. Key considerations include assessment of the wait period and data collection timing, understanding providing a service in the context of a trial, and clear responsive communications to support staff

Quantifying the differential contributions of deep groundwater to streamflow in nested basins, using both water quality characteristics and water balance

This paper describes use of a hydro-chemical mixing model and a water budget to investigate the presence of deep runoff pathways in two small, nested sub-catchments of the Eden basin, UK (8.8 km2 Blind Beck and 1.0 km2 Low Hall stream). A linear relationship between bicarbonate concentration and electrical conductivity was used in a two-component mixing model. End-members were identified as a high-solute, deep groundwater and a low-solute, soil-water. The mixing model indicated 69% ±10% deep groundwater in Low Hall for September–December 2008 and 46% ±8% in Blind Beck for the same period. The water budget also indicated more deep groundwater in Low Hall stream. These results were consistent with the findings of rainfall–runoff models which also indicated the presence of high storage, deeper pathways

The effect of topography, subsurface strata and land-use on observed distributions of soil moisture within a sub-catchment of the River Eden, Cumbria.

The location of saturated areas, generating saturation overland flow by return-flow and direct rainfall, affects the rates and pathways of nutrients and sediment moving into streams, thereby having implications for river water quality. The prediction of saturated areas is difficult as it depends on many factors such as topography, subsurface strata, land-use and aspect. This study, in the Blind Beck sub-catchment of the Eden River (Cumbria), investigates how these factors affect soil moisture patterns. Intensive spatial measurements of soil moisture are made during different seasons across research plots affected by different contributing factors. Geostatistical analysis is used to quantify differences in spatial patterns observed. Measured soil moisture distributions are to be compared to spatial distributions of relative wetness predicted by existing topography-only indices. This paper presents the results of a preliminary set of soil moisture plots

Hospice volunteers:bridging the gap to the community?

Current demographic, policy and management changes are a challenge to hospices to develop their volunteering practices. The study upon which this paper is based aimed to explore good practice in volunteer involvement and identify ways of improving care through developing volunteering. The project consisted of a narrative literature review; a survey of volunteer managers; and organisational case studies selected through purposive diversity sampling criteria. A total of 205 staff, volunteers, patients and relatives were interviewed across 11 sites in England in 2012. This article focuses on one of the findings – the place that volunteers occupy between the hospice and the community beyond its walls. External changes and pressures in society were impacting on volunteer management, but were viewed as requiring a careful balancing act to retain the ‘spirit’ of the hospice philosophy. Honouring the developmental history of the hospice was vital to many respondents, but viewed less positively by those who wished to modernise. Hospices tend to be somewhat secluded organisations in Britain, and external links and networks were mostly within the end-of-life care arena, with few referring to the wider volunteering and community fields. Volunteers were seen as an informal and symbolic ‘link’ to the local community, both in terms of their ‘normalising’ roles in the hospice and as providing a two-way flow of information with the external environment where knowledge of hospice activities remains poor. The diversity of the community is not fully represented among hospice volunteers. A few hospices had deliberately tried to forge stronger interfaces with their localities, but these ventures were often controversial. The evidence suggests that there is substantial scope for hospices to develop the strategic aspects of volunteering through greater community engagement and involvement and by increasing diversity and exploiting volunteers’ ‘boundary’ position more systematically to educate, recruit and raise awareness

ELSA:a randomised wait-list controlled trial and embedded qualitative case study evaluation assessing the causal impact of social action services on end of life experience

Background: Volunteers are central to the provision of much end of life care, but their impact is little understood. Volunteer befriending services could work to reduce isolation, meet emotional needs and maintain a sense of community connectedness. The primary aim of this study is to evaluate the effectiveness of receiving care from a volunteer service plus usual care at improving quality of life than usual care alone for adults in the last year of life. Here we provide descriptive baseline data on trial participants. Study participants: Patients (estimated to be in their last year of life) referred to volunteer befriending services across 11 end of life care providers in England. Study design and methods: A wait-list controlled trial, with participants randomly allocated to intervention (immediate receipt of volunteering intervention) or wait list arm (four week wait for intervention). Data collection at baseline, 4, 8 (12) weeks: WHO QOL BREF, Loneliness scale, mMOS-SS, social networks. Intention to treat analysis includes fitting a linear mixed effect model to each outcome variable at 4, 8 and 12 weeks. ISRCTN 1292981

How effective are volunteers at supporting people in their last year of life?:a pragmatic randomised wait-list trial in palliative care (ELSA)

Background: Clinical care alone at the end of life is unlikely to meet all needs. Volunteers are a key resource, acceptable to patients, but there is no evidence on care outcomes. This study aimed to determine whether support from a social action volunteer service is better than usual care at improving quality of life for adults in the last year of life. Methods: A pragmatic, multi-centre wait-list controlled trial, with participants randomly allocated to either receive the volunteer support intervention immediately or after a four week wait. Trained volunteers provided tailored face to face support including befriending, practical support and signposting to services, primarily provided within the home, typically for 2-3 hours per week. The primary outcome was rate of change of quality of life at 4 weeks (WHO QOL Bref, a general, culturally sensitive measure). Secondary outcomes included rate of change of quality of life at 8 weeks and Loneliness (De Jong Gierveld Loneliness Scale), social support (mMOS-SS) and reported use of health and social care services at 4 and 8 weeks. Results: 196 adults (61% (n=109) female), mean age 72. No significant difference found in main or secondary outcomes at 4 weeks. Rate of change of quality of life showed trends in favour of the intervention: physical quality of life domain (b= 3.98 (CI -0.38 to 8.34), psychological domain (2.59 [CI -2.24 to 7.43], environmental domain (b= 39 [-4.13 to 4.91]). Adjusted analyses to control for hours of volunteer input found significantly less decrease in physical quality of life in the intervention group (slope (b) 4.43 (CI 0.10 to 8.76). While the intervention also favoured the rate of change of emotional (b=-.08 [CI -.52 to .35] and social loneliness (b=-.20 [CI -.58 to .18]), social support (b=.13 [CI-.13 to .39], and reported use of health and social care professionals (b = .16 [CI -.22 to .55]), these were not statistically significant. No adverse events reported. Conclusions: Clinicians can confidently refer to volunteer services at the end of life. Future research should focus on 'dose' to maximise likely impact. ISRCTN 12929812 20.5.201