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?

BMC Palliative Care Bradley et al. BMC Palliative Care (2022) 21:170 https://doi.org/10.1186/s12904-022-01061-9 Open Access RESEARCH 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? NM Bradley1*, CF Dowrick2 and M Lloyd-Williams3 Abstract Introduction Social support is described by patients and other stakeholders to be a valuable component of palliative day care. Less is known about the range of hospice services that have been used in practice that facilitate social support. An online survey aimed to gain an overview of all hospice day services that facilitated social support for adults outside of their own homes. Methods An online survey was distributed via email to people involved in managing hospice day services. Questions were asked on hospice characteristics, including staff and volunteer roles. Respondents were asked to identify services they felt offered social support to patients. Data collection took place between August 2017 and May 2018. Results Responses were received from 103 hospices in the UK and ROI (response rate 49.5%). Results provide an overview of hospice day and outpatient services that offer social support to patients. These are: multi-component interventions, activity groups, formal support groups, befriending, and informal social activities. Multi-component interventions, such as palliative day care, were the most commonly reported. Their stated aims tend to focus on clinical aspects, but many survey respondents considered these multicomponent interventions to be the ‘most social’ service at their hospice. The survey also identified a huge variety of activity groups, as well as formal therapeutic support groups. Informal ‘social-only’ activities were present, but less common. Over a third of all the services were described as ‘drop in’. Most responding hospices did not routinely use patient reported outcome measures in their ‘most social’ services. Conclusions The survey documents hospice activity in facilitating social support to be diverse and evolving. At the time of data collection, many hospices offered multiple different services by which a patient might obtain social support outside of their own home and in the presence of other patients. Keywords hospice day services, palliative care, social support *Correspondence: NM Bradley 1 Research Fellow in Realist Evaluation, Centre for Health & Clinical Research, University of the West of England, Glenside Campus, BS16 1DD., Bristol, United Kingdom 2 Emeritus Professor, Department of Primary Care and Mental Health, University of Liverpool, Waterhouse Building, L69 3BX., Liverpool, United Kingdom 3 Professor & Honorary Consultant in Palliative Medicine, Department of Primary Care and Mental Health, University of Liverpool, Waterhouse Building, L69 3BX, Liverpool, United Kingdom © The Author(s) 2022. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. Bradley et al. BMC Palliative Care (2022) 21:170 Introduction ‘Social support’ is defined as the resource we gain through interaction with others, including tangible, emotional, or informational support, and companionship.[1] We are a social species – social support is an essential need that is tied to our survival.[2] The presence of social support, the absence of positive social relationships, and the subjective feeling of loneliness have each been demonstrated to be predictive of morbidity and mortality. [3–6] Furthermore, this risk exists on a continuum so that the socially isolated are most affected, but those who experience mild to moderate isolation are also affected. [7]. People living with life-limiting illness experience declining social support because their ability to participate in usual activities can be obstructed by changes in mobility, pain and other symptoms, and treatment burden.[8–12] For some, the experience of illness is characterised by increasing social isolation over time.[13] Loneliness in palliative care could stem from threats to personal autonomy, and fears of being or becoming a burden that constrain communication.[11] Personal inauthenticity, interpersonal avoidance, negative healthcare interactions, and the societal stigma of illness and dying contribute multiple layers of patient loneliness. [14–15] Those approaching the end of life with loneliness are more likely to experience depression, feelings of abandonment, and unbearable suffering.[16–19]. The objective of palliative care is to prevent and relieve the suffering of people with life-limiting illness, and their families, by responding simultaneously to physical, psychological, spiritual, social, cultural, and situational needs. Responding to unmet needs for social support could prevent suffering by helping to preserve a sense of purpose and allow threats to be redefined with new meaning and hope.[20] Implications of this for patient care are to maintain social networks where possible, and to arrange relationships with other patients so as to facilitate confidential connections that might lessen the pain of loneliness. One-to-one peer support in cancer care has been reported to be beneficial for some patients [21–23], but there is limited evidence to guide intervention in palliative care [24]. Hospice day services Hospices are prominent providers of palliative care; supporting more than 225,000 people in the UK each year to cope with the challenges of illness, dying and bereavement.[25] 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 numerous services, with the intention to provide holistic and person-centred responses to the varied and fluctuating needs of different patients.[26] Only a minority Page 2 of 12 of hospice services involve staying overnight, with the majority (83%) in 2015 occurring as homecare, outpatient services and hospice day care.[27]. The first hospice day care centre was opened by St Luke’s hospice in Sheffield in 1975– described as a ‘rallying point’ for patients and families to come together to cope with loss.[28] By the turn o (...truncated)