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How participating in MND and palliative care research can benefit patients and carers

With COVID-19 still causing so much hardship for people in Australia and across the world, motor neurone disease (MND) researchers are bravely continuing their work, helping to advance understanding of the disease, and the search for effective treatments.

MND researchers are not alone, however. People living with MND, their families, loved ones and others who care for them not only make MND research possible during the pandemic, they make some of the most important contributions to understanding this cruel and life limiting disease. 

Without the very people dealing with MND helping to test experimental drugs, donate blood samples or share their experiences with care and support, especially now as everyone comes to grips with COVID-19, the journey to a world without MND would stop.

Fortunately, there are practical ways to help more people affected by MND to get involved in MND research, as well as research into other highly relevant areas, such as palliative care. Palliative care can help people live more fully and comfortably with MND.


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Prof. Samar Aoun (middle) and staff from MND Western Australia (image supplied).


We looked at some of the evidence about how to encourage participation in research, and spoke with Professor Samar Aoun from the Perron Institute and La Trobe University, who is a palliative care expert. 

Professor Aoun stepped us through the facts, including what people with a life limiting illness and their family carers have said about the importance of having a choice in contributing to research.

People with a life limiting illness and their carers want to participate in research

Past studies find that people have strong desire to participate in research, even when facing the final stages of life. Studies show:

  • there is an eagerness to participate despite the difficulties of managing wounds, discomfort and other disease symptoms
  • it’s seen as a valuable use of the little time that remained, and
  • it’s an opportunity to share what they know to try and help others1.

Health organisations that help set standards in medical practice, such as the National Institute of Clinical Excellence in the United Kingdom and the Australian Commission on Safety and Quality in Healthcare, also encourage people with a life limiting illness to have a voice in their health care, and to make their own decision about participating in research2-3.

Professor Aoun explains that the desire to participate in research is similar for carers of those with a life limiting illness.

Professor Aoun and her team conducted research in Western Australia with 322 primary family carers to try and understand more about what they needed to support their caring role, and found that being involved in research offered them an opportunity to share their experiences and feelings1.

Among a number of important findings, Aoun told us that the research helped carers feel more connected, and that they were making a positive difference to care for people living with a life limiting illness. Aoun told us, “… they felt less isolated and more connected to others. The altruism of participants was evident as they wanted to make a difference and improve support for others in their situation.”

In the study, one carer’s reflection summed up what it felt like to participate in research, and why it’s important:
 

‘‘I am happy to do whatever I can to help if it makes a difference for others. Unless the government knows the details of what we need they can’t make a difference.’’

There are many benefits for people and carers affected by a life limiting illness who participate in research

The emotional, social and personal benefits of participating in research related to life limiting conditions can be a very positive, and meaningful, experience.

Lung cancer patients have reported receiving positive attention and feeling a sense of achievement. Helping to support the wellbeing of others was also seen as important1.

Other patients with cancer and in the final stages of life have reported similar experiences1. Participating in research was seen as contributing to society. Participants also found it helpful to talk and interact with others. Socialising became an opportunity to share reflections about living with a life limiting illness. 

For some, research participation is also about respect, and recognition. Patients report that participation becomes a validation of their own worth and life ‘‘outside of being the dying person”1.

Professor Aoun’s research with carers found that they too have experienced many benefits from participating in research1. The study suggested that with carers being able to talk about their needs, they experienced: 

  • less strain in providing care
  • less distance from others, and
  • comfort and encouragement when talking to researchers.

The study also found that, similar to patients, carers learned that they valued the ability to help others as a benefit of research participation. As one carer explained:
 

‘‘A psychological benefit in knowing that someone is thinking about these issues actually helped me. At least someone is doing research in this area and may make some changes to help others in our situation."

Better and more tailored interventions are possible

According to the evidence, there is a need to find ways of better meeting the needs of carers and patients with a life limiting illness. 

Professor Aoun explains:
 

“Without the perspectives of patients and their family caregivers, it is difficult to understand their needs and develop interventions to meet these needs. Indeed, patients see research as the key to improving care.”


Carers, for example, require training, education, equipment and other approaches to providing support that make it clear their investment will be valued and benefit those receiving care1

People living with an illness may need specific management strategies for pain and other symptoms, linguistically and culturally appropriate information and care, or more choices and control over where and how they spend the last stages of life.

Participating in research makes it possible to develop support for life limiting illnesses that is more suitable for a greater number of people, and more likely to be effective.

People with a life limiting illness and their carers want to decide for themselves whether to participate in research

One of the most important reasons for asking patients and carers if they’d like to be involved in research is that it can help to increase their sense of control over the difficulties of dealing with a life limiting illness1.

Asking someone if they’d like to participate in research gives them a choice they may not have had before.

And it is the ability of health professionals to allow this choice to be exercised that makes them so important for helping to improve the management of life limiting illnesses, and in an ethical way. As Professor Aoun notes:

“Although health professionals might seek to protect those they see as vulnerable, the denial of patients and their family members the opportunity to decide for themselves, whether to participate in research, violates the ethical principle of respect for autonomy.”

And participation is always entirely voluntary. A participant can withdraw from research at any time if they change their mind.

Learn more about MND clinical trials and palliative care research

There are many opportunities for people living with MND to participate in research and help the search for effective treatments, understanding of the disease and improved quality of life.

MND Australia provides up-to-date information about clinical trials for MND across Australia, as well as how to get involved.

Palliative care is also a valuable source of support for people living with MND. Palliative care can help make dealing with a life limiting illness easier, and improve quality of life.

Professor Aoun and her team lead some of the most comprehensive research exploring palliative care in Australia, and how it can better support carers and patients when dealing with a life limiting illness.


References
1. Aoun, S., Slatyer, S., Deas K., & Nekolaichuk, C. 2017. "Family Caregiver Participation in Palliative Care Research: Challenging the Myth." J Pain Symptom Manage, 53(5): 851-861.
2. National Institute for Health and Care Excellence (NICE). 2020. "Shared decision making". NICE, United Kingdom, accessed 17th August 2020, https://www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-guidelines/shared-decision-making
3. Australian Commission on Safety and Quality in Health Care. 2019. "Partnering with Consumers Standard". Australian Commission on Safety and Quality in Health Care, Sydney, accessed 17th August 2020, https://www.safetyandquality.gov.au/standards/nsqhs-standards/partnering-consumers-standard  

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