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The lived experience of volunteer-supported palliative care

Authors:

Elizabeth Drummond ,

Scholl Academic Centre, Hospice Isle of Man, IM
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Wendy Smith,

Scholl Academic Centre, Hospice Isle of Man, IM
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Sarah M McGhee,

Scholl Academic Centre, Hospice Isle of Man, IM
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Anne Mills

Scholl Academic Centre, Hospice Isle of Man, IM
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Abstract

Introduction: The care needed at end of life can go beyond what services can offer. This is where volunteers can make a difference, however the nature of their support can vary. Dodd et al. [1] recognised two types of input: ‘being there’ and ‘doing for’. Similarly, Burbeck et al. [2] examined the volunteer role and found three themes; the distinctness, characteristics and experience of the role. Here, a volunteer can be mediating between patients and staff, sometimes acting as a surrogate family member. Such complexity requires further study and more detailed information about the impact on care recipients, and the volunteers themselves, would greatly assist the training and development of volunteers as well as decisions on how to maximise the use of volunteers to achieve the most benefit.

Compassionate Isle of Man (IOM) has been developing the role of volunteers as Palliative Care Companions in the community. This evaluation aims to capture the impact and experience of volunteers and care recipients and examine the explicit and implicit needs for palliative care that they address. This paper will report on the pilot of the methods and initial findings.

Aims: To use capability measures, qualitative and other data to identify the implicit and explicit needs for volunteer support, the short-term impact(s) on care recipients and volunteers and the implications for the training of volunteers.

Methods: A prospective study will enrol care recipients and their carers at the outset of Compassionate IOM support. Baseline data will include stated needs as well as the ICEpop CAPability (ICECAP) measures [3] and interviews. Data collection will be repeated at 6 and 12 weeks and will include specially designed questionnaires and interviews to elicit perceptions of impact, satisfaction and details of the support experience. This information will be set within a cost-benefit framework to quantify the extent to which declared and undeclared needs are met, at what cost and with what benefits to care recipients and volunteers.

The initial pilot study will test the methods and include at least 10 care recipients, their main carers and the related volunteers.

Conclusion and implications: This pilot study will form the basis for a longer-term study which will provide essential information on the potential scope of volunteer support and their place in the overall service delivery of palliative care in the community.

References

1. Dodd S, Hill M, Ockenden N, Algorta GP, Payne S, Preston N, et al. ‘Being with’ or ‘doing for’? How the role of an end-of-life volunteer befriender can impact patient wellveing: interviews from a multiple qualitative case study (ELSA). Supportive Care in Cancer 2018;26(9):3163-3172. doi: https://doi.org/10.1007/s00520-018-4169-2

2. Burbeck R, Candy B, Low J, Rees R. Understanding the role of the volunteer in specialist palliative care: a systematic review and thematic synthesis of qualitative studies. BMC Palliative Care 2014;13(3):1-12. doi:https://doi.org/10.1186/1472-684X-13-3

3. University of Birmingham. ICECAP capability measures [webpage on the Internet]. [cited 2021 30 Nov]. Available from: https://www.birmingham.ac.uk/research/activity/mds/projects/haps/he/icecap/index.aspx

 

How to Cite: Drummond E, Smith W, McGhee SM, Mills A. The lived experience of volunteer-supported palliative care. International Journal of Integrated Care. 2022;22(S3):265. DOI: http://doi.org/10.5334/ijic.ICIC22131
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Published on 04 Nov 2022.

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