Amara Nwosu

MBCHB FRCP PhD


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Development of ‘use-cases’ for a digital palliative care bereavement service [new study for 2022]

We are delighted that our research funding application to develop ‘use cases’ for digital palliative care bereavement service was successful. The project will be funded by Liverpool Clinical Commissioning Group and is part of the Research Capability Funding stream.

We will aim to conduct the study in 2022. The lay summary is below.

Please contact me on Twitter @amaranwosu for further information:

Lay Summary

Grief, bereavement and the need for bereavement services

Grief is a natural process, in which many people will cope with help from their friends and family. However, many people will need professional help.1-3 People who are bereaved are more likely to have problems with their mental health and wellbeing. 4-6 These problems can affect many people in society.7-9 Therefore, good bereavement care is important to ensure that people get the support they need when they are grieving.3

Challenges facing bereavement services

There are many challenges to delivering bereavement care, these include:

  • There is not enough resources to meet current demand.10 
  • Some people may not easily receive support because they live in an area where there are few services.11 
  • Some people struggle to find time to receive support during working hours due to their other commitments.
  • The COVID-19 pandemic has increased demand and has made it difficult for people to access services.3 2 
  • Palliative care need is increasing and is expected to increase by 42% in 2040, this will also increase need for bereavement support.12

Can digital bereavement services help more people receive support?

It is possible technology can be used to help more people to access bereavement support.13 However, it is important we carefully design these systems so they work properly.

In this project we will create the ‘blueprint’ needed to design a new digital bereavement serviceIn this study we will interview staff and caregivers about bereavement support, to understand what a digital bereavement service should look like. We will use this information to design the ‘blueprint’ which is needed to design a new digital bereavement support service. In computer science this ‘blueprint’ is called a ‘use-case’.14 15 We will partner with computer developers to design ‘use-cases’ which we can then use to build a digital bereavement service. After this study we will do more research to test whether the new digital bereavement service is helping more people to get the support they need.

References

1. Aoun SM, Breen LJ, Howting DA, et al. Who needs bereavement support? A population based survey of bereavement risk and support need. PloS one 2015;10(3):e0121101.

2. Pattison NA, White C, Lone NI. Bereavement in critical care: A narrative review and practice exploration of current provision of support services and future challenges. Journal of the Intensive Care Society 2020:1751143720928898.

3. Harrop E, Selman L, Farnell D, et al. 6 End of life and bereavement experiences during the COVID-19 pandemic: Interim results from a national survey of bereaved people. BMJ Supportive & Palliative Care 2021;11:A3-A3.

4. Guldin M-B, Vedsted P, Zachariae R, et al. Complicated grief and need for professional support in family caregivers of cancer patients in palliative care: a longitudinal cohort study. Supportive care in cancer 2012;20(8):1679-85.

5. Wittouck C, Van Autreve S, De Jaegere E, et al. The prevention and treatment of complicated grief: A meta-analysis. Clinical psychology review 2011;31(1):69-78.

6. Stroebe M, Schut H, Stroebe W. Health outcomes of bereavement. The Lancet 2007;370(9603):1960-73.

7. Birrell J, Corden A, Macduff C, et al. Socio-economic costs of bereavement in Scotland: main study report. 2013

8. van den Berg GJ, Lundborg P, Vikström J. The economics of grief. The Economic Journal 2017;127(604):1794-832.

9. Genevro J, Miller T. The emotional and economic costs of bereavement in health care settings. Psychologica Belgica 2010;50(1-2)

10. Harrop EJ, Goss S, Farnell DJ, et al. Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic. medRxiv 2021

11. Wakefield D, Fleming E, Howorth K, et al. Inequalities in awareness and availability of bereavement services in north-east England. BMJ Supportive & Palliative Care 2020

12. Etkind SN, Bone AE, Gomes B, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Medicine 2017;15(1):102. doi: 10.1186/s12916-017-0860-2

13. Morris SE, Ryan AK. Bereavement via Zoom during COVID-19. Journal of psychosocial oncology 2021:1-4.

14. Cockburn A. Writing Effective Use Cases. https://books.google.co.uk/books?id=TUZsAQAAQBAJ: Addison-Wesley 2001.15. Clausen M, Apel R, Dorchain M, et al. Use Case methodology: A progress report. Energy Informatics 2018;1(1):273-83.

15. Clausen M, Apel R, Dorchain M, et al. Use Case methodology: A progress report. Energy Informatics 2018;1(1):273-83.