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?

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.

Toward enhanced decentralized palliative care services in Neno District, Malawi: a qualitative study.

“…The study also found that patients in peripheral health facilities face challenges accessing social support compared to those in referral facilities. The lack of a vibrant social support system in rural areas means that palliative care services are not holistic, as psychosocial support services are often unavailable [ 2 , 39 , 40 ]. Therefore, it is imperative for district-level programs to devolve power to rural facilities, allowing them to function optimally and provide comprehensive care that includes psycho-social support services [ 41 – 43 ].…”

Toward enhanced decentralized palliative care services in Neno District, Malawi. A qualitative study

“…Our study also found that patients in peripheral health facilities face challenges accessing social support compared to those in referral facilities. The lack of a vibrant social support system in rural areas means that palliative care services are not holistic, as psychosocial support services are often unavailable [2,22,23]. Therefore, it is imperative for district-level programs to devolve power to rural facilities, allowing them to function optimally and provide comprehensive care that includes psycho-social support services [24][25][26].…”

Feasibility of Patient Reported Outcome Measures in Psychosocial Palliative Care: Observational Cohort Study of Hospice Day Care and Social Support Groups

“…Research locations were the day services at four independent hospices in England. Selection of research locations was informed by a survey of hospice day services undertaken by the research team [ 4 ]. A detailed understanding of each hospice day service was sought by the researcher (NB) during a concurrent qualitative component of research involving non-participant observations and service-provider interviews.…”

“…Most hospices are independent charities working within and alongside the healthcare system, with varying remits and stated aims. Hospice day services facilitate social support for palliative care outpatients, in conjunction with other clinical or professional inputs, with the intention to improve quality of life so that beneficiaries can ‘live well’ [ 4 ]. Referral is often via a healthcare provider, such as by a General Practitioner or Hospital Consultant, but many hospices also accept self-referrals.…”