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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Investigation and management of iron deficiency anaemia in a specialist palliative care setting and the role of intravenous iron: a descriptive analysis of hospice data

Anaemia is common in hospice populations and associated with significant symptom burden. Guidelines recommend investigating for and treating iron deficiency (ID), but there is little evidence of this practice in palliative care populations. Our paper (published in AMRC Open Research) describes the results of investigations for and subsequent management of ID in Marie Curie Hospice Liverpool.

Our data demonstrates that iron deficiency is common and can be safely treated with intravenous iron replacement, within current guidelines, in a hospice setting. Further research should define the optimum use of this approach in palliative care patients.

More information can be found here:

Steele T, Bonwick H, Nwosu AC and Chapman L. Investigation and management of iron deficiency anaemia in a specialist palliative care setting and the role of intravenous iron: a descriptive analysis of hospice data [version 1; peer review: awaiting peer review]. AMRC Open Res 2021, 3:6 (https://doi.org/10.12688/amrcopenres.12963.1)

Medical photo created by rawpixel.com – www.freepik.com


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Evaluating the use of video communication technology in a hospital specialist palliative care team during the COVID-19 pandemic

Healthcare professionals’ use of video communication technology has increased during the novel coronavirus disease (COVID-19) pandemic, due to infection control restrictions. Currently there is little published data about the experiences of specialist palliative care teams who are using technology to communicate during the COVID-19 pandemic. The aim of this evaluation (published in AMRC Open Research) was to describe the experience of a UK based hospital specialist palliative care team, who were using video communication technology to support care during the COVID-19 pandemic.

Video communication technology has the potential to improve specialist palliative care delivery; however, it is essential that healthcare organisations address the existing barriers to using this technology, to ensure that these systems work meaningfully to improve palliative care for those who are most vulnerable beyond the COVID-19 pandemic.

More information can be found here:

Crosby B, Hanchanale S, Stanley S and Nwosu AC. Evaluating the use of video communication technology in a hospital specialist palliative care team during the COVID-19 pandemic [version 1; peer review: awaiting peer review]. AMRC Open Res 2021, 3:5 (https://doi.org/10.12688/amrcopenres.12969.1)

Abstract vector created by vectorjuice – www.freepik.com


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The use of advance consent to enable hydration assessments, for research, at the end of life

As the need for palliative care increases, it is essential for research opportunities to be offered to patients with palliative care needs to ensure patients can receive evidence-based treatments and services to improve care. Although it is recognised that palliative, and in particular end of life, research can be both methodically and ethically challenging it is important to note that palliative patients are keen to be involved with research.
Over the past three years, patients in Marie Curie Hospice Liverpool have been recruited to a research study evaluating hydration, where advance consent methodology is used to facilitate participation at the end of life. In this study, participants provided ‘advanced consent’ to receive research assessments, in anticipation of the deterioration of their health and loss of the ability to provide consent to ongoing research participation. During this process, recruiting participants will nominate a consultee (who can be any family member, friend or healthcare professional), who is contacted by the researcher prior to completion of research assessments. Participants will generally choose a caregiver or friend to act as a personal consultee; however, there may be some instances where a healthcare professional is chosen.
In this, we share our experiences using advanced consent methodology and a healthcare professional acting as a consultee, to facilitate research assessments in a patient who was lacking capacity at the end of life.

More information can be found in our case report here:

Stanley S and Nwosu AC. Case Report: The use of advanced consent methodology and healthcare professional consultee to facilitate research participation in dying patients [version 1; peer review: awaiting peer review]. AMRC Open Res 2021, 3:3 (https://doi.org/10.12688/amrcopenres.12961.1)


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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.


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MyPal Podcast: Undergraduate medical education in palliative care – interview with Dr Daniel Monnery – episode 10

I interview Dr Daniel Monnery (Speciality trainee registrar in Palliative Medicine in the Mersey Deanery) to discuss a variety of topics including: postgraduate training in palliative medicine, medical handover, undergraduate medical education and its relevance to palliative care.

Student in library

Copyright Dr Amara Nwosu, KingAmi media 2014. www.amaranwosu.com

Music by ‘Year of the Fiery Horse’ (YOTFH). Soundcloud link: @year-of-the-fiery-horse


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Peer Led Learning In Palliative Care #8

Dr Amara Nwosu discusses his paper about peer-led learning as a mechanism to facilitate palliative care education in medical undergraduates.

Nwosu A, Mason S, Roberts A, Hugel H. Does peer-led education have a role in teaching medical students about palliative care? The evaluation of an examination question-writing task. The Clinical Teacher 2013;10(3):151-4
http://www.ncbi.nlm.nih.gov/pubmed/23656675

Peer learning pic

Copyright Dr Amara Nwosu, KingAmi media 2014. http://www.amaranwosu.com

Music by ‘Year of the Fiery Horse’ (YOTFH). Soundcloud link: https://soundcloud.com/year-of-the-fiery-horse


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MyPal podcast: Integrated Clinical Academic Training #3

I discuss my recent appointment to his Academic Clinical Lecturer (ACL) position in Palliative Care at the University of Liverpool. I then provide a brief overview of the Integrated Clinical Academic Training (ICAT)pathway in the UK which started in 2007.

Copyright Amara Nwosu
www.amaranwosu.com

Music by Year of the Fiery Horse
https://soundcloud.com/year-of-the-fiery-horse
References:

Nwosu AC. Integrated clinical academic training: an exciting new dawn for academic palliative medicine. Journal of Palliative Medicine 2012;15:507-8. (link to full article)
https://docs.google.com/file/d/0B4-vyPlJKkMgZVFwVGtVS2hVN2s/edit


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MyPal podcast: Research and innovation in palliative care (episode 2). Now available on Soundcloud and iTunes

In the second episode of MyPal I the importance of research and innovation in palliative care. Catch it on SoundCloud. It’s also now available on iTunes!

iTunes link:
https://itunes.apple.com/gb/podcast/mypal-palliative-care/id955964346?mt=2

Copyright Amara Nwosu
www.amaranwosu.com

Music by Year of the Fiery Horse
@year-of-the-fiery-horse

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References:

World Health Organization definition of palliative care:
www.who.int/cancer/palliative/definition/en/

Research in palliative care: can hospices afford not to be involved? (Payne et al. Lancaster University)

www.lancaster.ac.uk/shm/research/io…esearch-hth.pdf

Research into end-of-life cancer care—investment is needed. Sleeman et al
www.thelancet.com/journals/lancet/…60230-X/fulltext

Patients want to be involved in end-of-life care research. Nwosu et al (BMJ spcare subscription needed)
spcare.bmj.com/content/3/4/457.extract