Most hospices in the UK and ROI are independent charities, working within and alongside the local health and social care system. Each hospice might offer a number of different services, intending to provide a holistic and person-centred response to the varied and fluctuating needs of different patients. Only a minority of hospice services involve staying overnight, with the majority occurring as homecare, outpatient services, and hospice day care.
The first hospice day care centre was opened by St Luke’s hospice in Sheffield in 1975– it was described as a rallying point for patients and families to come together to cope with loss.
By the turn of the century, there were over 220 day hospices in the UK.
Hospice day centres might host a mixture of formal interventions, activity and support groups, as well as a varied social programme. Volunteers are commonly involved, contributing socially as well as to creative activities, complementary therapies, transport, counselling and pastoral faith-based support.
Variations in practice are well-established and continuing to flourish. However, there is not much known about the full range of service models used within hospice day services to facilitate social support, which could differ markedly in their aims, processes, outcomes, and costs.
Development to service design is ongoing, with some hospice day centres offer a broad menu of options for group support and activity. Yet there is sparse evidence available to guide decision-making, and much of the informal support offered by hospices has not been quantified.
Social support seems important to patients, caregivers, and hospice providers – but this is not often reflected in the choice of outcome measures.
The Covid-19 pandemic has meant a stark shift in service provision for many hospices, and new challenges in the lives of people with long-term or life-limiting health conditions. Innovations in digital or remote delivery were remarkable during the initial shock of the pandemic, and further service redesign is now widespread. However, documentation of practice in the ‘pre-pandemic’ phase of the twenty-first century remains sparse.
This blog accompanies two research articles that have recently been published.
In the first, I report on a survey of hospice day services, asking ‘what services does your hospice provide that offers social support to patients?’. Responses from over 100 different hospices indicated an impressive variety of activity that were categorised as shown in the figure.
On average, each responding hospice reported between 4 and 5 services facilitating social support, and around a third of these were available as a drop-in. The full paper is available open access with BMC Palliative Care : A survey of hospice day services in the United Kingdom & Republic of Ireland : how did hospices offer social support to palliative care patients, pre-pandemic? | Full Text (biomedcentral.com)
The survey captures a moment in time in which the hospice sector was diversifying its provision and engaging in critical reflection of its social offering.
Many respondents reported that they had recently redesigned or are about to redesign their model of services, considering social support to be an important and perhaps under-recognised part of the work they do. Others were in the process of reviewing their day services, expanding what they offer to meet different levels of patient need and provide choice.
Alongside (and possibly propelling) the diversification of hospice day services was a shifting financial landscape, with future funding and staffing levels in uncertainty. This uncertainty has only multiplied in the time since data collection.
The next article explains how patient-reported outcome measures were used as part of the same PhD project, to observe change over time for patients who had recently started attending hospice day services.
The sample size was small – thirty patients were recruited and nineteen completed their second timepoint, but only five completed all three.
The results showed reduced loneliness and increased emotional support. Depression was more likely to be reduced in men, and for people that lived alone.
The full paper is available open access here with the International Journal of Environmental Research and Public Health: Feasibility of Patient Reported Outcome Measures in Psychosocial Palliative Care: Observational Cohort Study of Hospice Day Care and Social Support Groups | Full-Text | (mdpi.com)
More knowledge is needed to better understand effectiveness and evaluation of social support interventions in palliative care. Building on this work, the next phases of research will unpack the processes of facilitating social support between patients, considering the complexity of alternative venues, outdoors, or digital formats.
To hear present more about this research, join this webinar on November 10th, hosted by the Association of Palliative Day Services: Social Support in Hospice Day Services – Moving Forward from the Covid-19 Pandemic | (apds.org.uk)
To ask a question directly, or to express an interest in being involved in the next steps of research on this topic, please contact me directly at natasha.bradley@uwe.ac.uk
Dr Natasha Bradley, Research Fellow in Realist Evaluation, (she/her)
Centre for Health & Clinical Research, School of Health and Social Wellbeing, College of Health, Science and Society, University of the West of England (UWE).
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Figure 1: Overview of survey (Bradley et al, 2022a).
Figure 2: Overview of Patient-Reported-Outcome-Measures (Bradley et al, 2022b).
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