What types of research are available?

There are different types of research that someone living with a life-limiting illness or their family may be invited to be involved with. Some will be purely drug-based trials that are aimed at improving physical or psychological symptoms of the person living with the illness. Others may be more psychosocial in nature and are interventions to improve wellbeing or quality of life. These may include the carer as well as the person living with the illness. Different research studies will have different requirements for participation and some will be more intrusive or require a larger time commitment than others.

We all have the right to have an opportunity to participate in research

Sometimes, health professionals will not want the people they care for to be approached about research, particularly people with a life-limiting illness or their families. Health professionals may feel like they need to protect patients and families from additional possible stress during an already stressful time. Families also may not want the person living with a life-limiting illness to participate as they may be worried about the possible risks or the person’s fatigue levels.

While these concerns are understandable, it is important that people (who have capacity) get to decide for themselves and make an informed choice about participating in research. There may be more perceived benefits to the person making the decision than others may be aware of.

Unfortunately, people from rural areas and people who are non-English speaking have less opportunity to participate in research.

What are the benefits of being involved in research?

There are many possible benefits to being involved in research for people living with a life-limiting illness or their family carer, such as:

• Early access to a drug or intervention that may be effective - The intervention or drug being evaluated might have a physical or emotional benefit to the person living with illness or to the family carer. Research trials will often be evaluating whether an intervention or drug is more effective than ‘usual care’. If the results show an increased benefit then they will likely go on to become part of usual care in the future. So being involved in a trial may result in early access to a beneficial intervention or drug.
• Access to additional information, insights or support – Sometimes the participant will receive more time and support from health professionals, or more detailed information about their illness because of their involvement in research.
• Validation and reassurance – A sense of validation for what you are experiencing (as a patient or carer) and that there are others going through a similar thing.
• Learning or new skills – Sometimes the person who is ill or the family carer of the person may learn new skills by participating in research.
• Altruistic benefit - The participant may feel a sense of ‘altruism’ by contributing to greater knowledge or awareness that may benefit others in the future who are experiencing a similar situation.
• Making meaning of your illness – To use your illness in a constructive way can help you feel like there is meaning to it or some form of purpose.
• To feel useful – Often people living with a life-limiting illness are not able to actively contribute and this is a way that people can still contribute and feel useful.

Are there risks?

Often there are risks in being involved in research. Remember the goal of some research studies is to find out if an intervention is beneficial or potentially harmful. Both are possible. However, research studies in Australia have to go through a Research Ethics Committee and this ensures that any risks are clearly outlined in the research information sheet. It is up to potential participants to decide if the potential benefits outweigh any potential risks.

How can people find out about research opportunities?

People are often told about research opportunities by their health care team or they are advertised through newsletters. However there are also public trial registries that anyone can access online and look for research trials that might be appropriate for them. We would encourage anyone interested in research to be informed, read the Participant Information and Consent Forms, and discuss research opportunities with their health care team.

Research Opportunity: The FOCUSau Study for people with advanced cancer and their family carer

The FOCUSau is an example of a research trial that anyone with advanced cancer with their primary support person can be involved with. The FOCUSau program is an online initiative of the University of Melbourne and St Vincent’s Hospital. It aims to improve emotional wellbeing and quality of life whilst offering coping strategies, future planning advice and symptom management.

It is delivered over the internet and is made of four guided sessions. It incorporates evidence-based tailored strategies which encourages participants to:

• Talk to each other about their needs and concerns
• Build coping strategies
• Deal with feelings of uncertainty
• Plan for the future
• Manage common symptoms related to cancer

The FOCUSau program is funded by the National Medical and Research Council with ethics approval from St Vincent’s Hospital, Melbourne.

Anyone with advanced cancer who is interested in finding out more can register their interest at www.medicine.unimelb.edu.au/focusau#get-involved

Please note that CarerHelp does not endorse the FOCUSau study. Dr Tina Thomas has a dual role and works on both the CarerHelp project and the FOCUSau project.