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.


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Digital health priorities for palliative care research

We have deposited our paper “Technology in Palliative Care (TIP): the identification of digital priorities for palliative care research using a modified Delphi method” on the medRxiv preprint server (ahead for formal peer reviewed publication)

The aim of this study was to identify research priority areas for digital health in palliative care.

This is first study to identify digital health research priorities for palliative care and provides guidance for researchers, funders and policy makers to consider areas for future research and development. 

We identified 16 research priority areas for technology in palliative care, representing 8 themes of big data, mobile devices, telehealth, virtual reality, artificial intelligence, the smart home, biotechnology and digital legacy.  Our findings will support researchers, clinicians and policy makers to improve the evidence base in these areas, through further research and development. This work is timely and important, as global palliative care need is increasing but there is a lack of evidence of how digital health can be meaningfully used to support care needs of people with advanced illness.  Therefore, it is important that the risks of using these technologies in palliative care are properly addressed to ensure that these tools are used meaningfully, wisely and safely and do not cause unintentional harm

The pre-print is freely available from the following link. Please note, that this has not been peer reviewed so should not yet be used to guide clinical practice.

Nwosu AC, McGlinchey T, Sanders J, Stanley S, Palfrey J, Lubbers P, Chapman L, Finucane A, Mason S. Technology in Palliative Care (TIP): the identification of digital priorities for palliative care research using a modified Delphi method. Medrxiv 2021. https://doi.org/10.1101/2021.06.24.21259307

health technology design, vector illustration eps10 graphic


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Robotic technology for palliative and supportive care: Strengths, weaknesses, opportunities and threats

How could robots help us at the end of life? Check out this open access article I published with some great co-authors.

https://journals.sagepub.com/doi/full/10.1177/0269216319857628

What is already known about the topic?

  • Medical robots have mainly been used to support surgical procedures and for a variety of assistive uses in dementia and elderly care.
  • There has been limited debate about the potential opportunities and risks of robotics in other areas of palliative, supportive and end-of-life care.

What this paper adds?

  • The potential opportunities of robotics in palliative, supportive and end-of-life care include a number of assistive, therapeutic, social and educational uses.
  • There is concern that robots will exacerbate healthcare inequalities, disrupt the workforce and reduce face-to-face human interaction.

Implications for practice, theory or policy

  • Future work should evaluate the health-related, economic, societal and ethical implications of using robotic technology in palliative, supportive and end-of-life care.
  • There is a need for collaborative research to establish use-cases and policy recommendations to guide the appropriate use of robots for people with serious illness.

CLICK below to access the artilce

Nwosu AC, Sturgeon B, McGlinchey T, Goodwin CDG, Behera A, Mason S, Stanley S, Payne TR. Robotic technology for palliative and supportive care: strengths, weaknesses, opportunities and threats. Palliative Medicine 2019.