Article Text
Abstract
Background Unmet social needs in palliative care can be a component of suffering towards the end of life. Social isolation or loneliness in patients is associated with low mood, pain, and increased caregiver burden. Hospices in the UK provide a range of day and outpatient services that facilitate social support for patients and caregivers. These interventions are thought to improve wellbeing and quality of life, however, there is limited work interrogating the contexts and mechanisms through which these groups can lead to positive outcomes.
Aims This research aims to develop evidence-based explanations of how social support interventions can improve outcomes in palliative care, for whom, and in what circumstances.
Methods Previous work has developed initial programme theories, initially through interviews with hospice staff (n=19) and researcher observations of day services (n=12), followed by focus groups with hospice staff (n=30). These theories have now been ‘tested’ through interviews with palliative care patients from five hospices in England (n=18).
Results The physical and social restrictions of life-limiting illness can give rise to social isolation and loneliness. The hospice group environment provides opportunities to engage in reciprocal support – patients share useful information, empathy, and humour – which can contribute to feelings of belonging, or peace of mind about the future. Engaging in new or adapted activities can help to restore meaning and boost mood. These experiences help attendees to cope with the challenges of life-limiting illness and reach a point of acceptance with their mortality.
Conclusion The findings of this research detail how and why social support with others ‘in the same boat’ enables people with life-limiting illness to adapt to change and prepare for the future. Social settings within hospice day services may be impactful in reducing or preventing distress for patients, and in alleviating perceived burden on caregivers or family members.
Funded by: UWE Bristol Vice-Chancellor’s Early Career Researcher Award.