Abstract
Introduction
Our mental and physical wellbeing is influenced by our social surroundings. Patients and their families at risk of loneliness and social isolation, which can increase depression and pain, and decrease life satisfaction and coping resources. Hospices offer a range of day and outpatient services that involve a component of social support, representing an innovative area of practice - but evidence for outcomes is limited by persistent research challenges.
Aims
This presentation reports on PhD research into social support in palliative care (ESRC-funded 2016-2020). The project asks how the effectiveness of hospice day services might be appropriately understood, demonstrated, and improved. We aim to share findings and to reflect on the experience of realist evaluation in psychosocial palliative care.
Method
Using multiple research locations and mixed methods: • systematic review of the literature • online survey of hospices (n=103) • longitudinal cohort study observing patient outcomes (n=30) • qualitative interviews with hospice service-providers (n=19) • researcher observations of hospice day services (n=12)
Results
Palliative care patients can experience loneliness and social isolation from the losses associated with illness, their changing support needs, and constrained emotional communication. To reduce patient loneliness, hospices might seek to facilitate reciprocal social support and collective opportunities to acknowledge mortality. Autonomy and familiarity within the group could enable reciprocity and honesty.
Conclusion
In some contexts, social opportunities can lead to changes in emotions and behaviour that ultimately increase resources to cope with illness and prepare for dying. This could alleviate burden on families and healthcare providers as well as improving quality of life for the patient. Impact Interventions challenging to evaluate using traditional methods can benefit from realist approaches. Dissemination and ongoing collaboration with hospices allows this work to inform practice, at a time when the sector critically reflects on the equity of service provision.
Our mental and physical wellbeing is influenced by our social surroundings. Patients and their families at risk of loneliness and social isolation, which can increase depression and pain, and decrease life satisfaction and coping resources. Hospices offer a range of day and outpatient services that involve a component of social support, representing an innovative area of practice - but evidence for outcomes is limited by persistent research challenges.
Aims
This presentation reports on PhD research into social support in palliative care (ESRC-funded 2016-2020). The project asks how the effectiveness of hospice day services might be appropriately understood, demonstrated, and improved. We aim to share findings and to reflect on the experience of realist evaluation in psychosocial palliative care.
Method
Using multiple research locations and mixed methods: • systematic review of the literature • online survey of hospices (n=103) • longitudinal cohort study observing patient outcomes (n=30) • qualitative interviews with hospice service-providers (n=19) • researcher observations of hospice day services (n=12)
Results
Palliative care patients can experience loneliness and social isolation from the losses associated with illness, their changing support needs, and constrained emotional communication. To reduce patient loneliness, hospices might seek to facilitate reciprocal social support and collective opportunities to acknowledge mortality. Autonomy and familiarity within the group could enable reciprocity and honesty.
Conclusion
In some contexts, social opportunities can lead to changes in emotions and behaviour that ultimately increase resources to cope with illness and prepare for dying. This could alleviate burden on families and healthcare providers as well as improving quality of life for the patient. Impact Interventions challenging to evaluate using traditional methods can benefit from realist approaches. Dissemination and ongoing collaboration with hospices allows this work to inform practice, at a time when the sector critically reflects on the equity of service provision.
| Original language | English |
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| Publication status | Published - 30 Jan 2022 |
| Externally published | Yes |
| Event | The Marie Curie Research Conference Improving End of Life for All - Duration: 30 Jan 2022 → 04 Feb 2022 |
Conference
| Conference | The Marie Curie Research Conference Improving End of Life for All |
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| Period | 30/01/2022 → 04/02/2022 |