HOW MELANOMA AFFECTS PATIENTS AND THEIR CARERS?
A diagnosis of melanoma can have a significant psychological impact upon the patient and their loved ones.
At Melanoma Institute Australia we are conducting a study to explore the unmet needs of melanoma patients and their carers.
Our aim is to use this information to create resources that may be helpful to help ease the burden of this diagnosis.
About the study
You are invited to take part in a research study exploring supports that may help melanoma patients and their carers cope better with melanoma diagnosis, treatment and survivorship. The information gained from this study will be used to create resources that may be helpful, as well as research the areas that are of biggest importance to melanoma patients and carers.
Participation in this research study is voluntary. Full details of the study can be found here.
Who can take part in the study?
We are interested in learning about the experiences of both patients diagnosed with melanoma and their carers. A carer is considered a person who has been most involved in supporting a patient with melanoma. Carers can be someone from immediate family (e.g. husband, wife, partner, parent, child, sibling), extended family (e.g. relative) or a friend. This study does NOT involve carers that provide formal (paid) supports.
To be able to take part in this study you need:
▸ You are 18 years of age or older
▸ You are proficient in English
▸ (PATIENTS ONLY) You have been diagnosed with Stage 0-IV melanoma and
Are currently undergoing treatment for your melanoma (e.g. surgery, immunotherapy, targeted therapy, radiation therapy or chemotherapy) OR you have completed your melanoma treatment no longer than 2 years ago.
Have NOT had any other cancer diagnoses in the last 5 years to ensure that the results we obtain relate to melanoma specifically, rather than another cancer.
▸ (CARERS ONLY) You have been caring for a person diagnosed with Stage 0-IV melanoma. The melanoma patient that you provided care for:
Is currently undergoing treatment for their melanoma (e.g. surgery, immunotherapy, targeted therapy, radiation therapy or chemotherapy) OR they have completed melanoma treatment no longer than 2 years ago.
Has NO other cancer diagnoses in the last 5 years to ensure that the results we obtain relate to melanoma specifically, rather than another cancer.
How much of my time will the study take?Participation in this study will take about 35 minutes of your time. The participation in two additional parts of this study is voluntary and information about them will be provided in a separate Participant Information Statement.
Are there any risks or costs associated with being in the study?The greatest anticipated cost of participating in this study is giving up your time. This survey will ask you to reflect on your experiences of diagnosis, treatment and living with melanoma, or caring for a melanoma patient, which may result in you experiencing mild distress. If you are experiencing distress during this study, you are encouraged to contact the following support lines for support: Cancer Council Helpline (PH: 131 120), a free and confidential telephone information and support service with experienced cancer health professionals and counsellors. LifeLine (PH: 131 114), a free and anonymous telephone counselling service. (if you are under 25 years of age) CanTeen (PH: 1800 835 932, Website: www.canteen.org.au), a free, confidential service that provides online and face-to-face counselling for people under 25 years of age that have been affected by cancer. Melanoma Patients Australia (PH: 1300 884 450, Website: www.melanomapatients.org.au), an independent, not for profit organisation that provides free emotional support, education and support groups online, over the phone or face to face.
What if I would like further information about the study?When you have read this information, Dr. Iris Bartula will be available to discuss it with you further and answer any questions you may have. If you would like to know more at any stage during the study, please feel free to contact: Dr. Iris Bartula Head of Research Psychology email@example.com OR firstname.lastname@example.org PH: (02) 9911 7398
Are there any benefits associated with being in the study?We cannot guarantee that you will receive any direct benefits from being in the study. However, in the future, you may indirectly benefit from the development and implementation of the resources that are based on the findings of this study.
Will I be told the results of the study?You have a right to receive feedback about the overall results of this study. You can tell us that you wish to receive feedback by providing contact details during the consent procedure (which will NOT be linked to your responses) or emailing Dr. Iris Bartula directly on email@example.com OR firstname.lastname@example.org. Alternatively, the study summary will be published on the Melanoma Institute Australia website and reported in the quarterly newsletter. This feedback will be in the form of a one-page summary that outlines main findings from this study. You will receive this feedback after the study is finished.
What will happen to information about me that is collected during the study?By providing your consent, you are agreeing to us collecting personal information about you for the purposes of this research study. Your information will only be used for the purposes outlined in this Participant Information Statement, unless you consent otherwise. If you complete the questionnaire online, the questionnaire will be hosted on REDCap, a well-accepted, secure, password-protected online platform for questionnaire administration and data collection that complies with University of Sydney Research Data Management Policy 2014. During the study, the data will be stored on REDCap servers that are located in Sydney, Australia. If you complete the questionnaire in paper, your returned questionnaire will be stored in locked filing cabinets on Melanoma Institute Australia premises. For analysis, data will be exported in a de-identified format to files that are suitable for statistical analyses, which will be stored on Research Data Store, a cloud storage that also complies with Research Data Management Policy 2014. The data will be retained on the Research Data Store for 5 years or until you reach the age of 25, whichever occurs later. Only researchers listed on this form will have access to your information. Since the data will be exported and stored in de-identified form, it will be impossible for you to gain access to your personal information following submission of your responses to this survey. Your information will be stored securely, and your identity/information will be kept strictly confidential, except as required by law. Study findings may be published, but you will not be individually identifiable in these publications. A short summary of the aims and findings of the research will be made available to Melanoma Institute of Australia, Melanoma Patients Australia and upon your request (by providing your contact details when you provide consent to participate in this study).
Can I tell other people about the study?Yes, you are welcome to tell other people about the study.
What will the study involve for me?To participate in this study, you will be asked to complete a confidential survey either online or in paper format that will involve answering questions about your general health and well-being, experiences, thoughts and feelings and any areas where you may need additional help or supports. The questions can be answered completely anonymously. This study has two additional parts that you can participate in if you wish (you can choose to participate in neither, one or both of those additional research studies): Telephone (or face-to-face) interview that will reflect on your melanoma / caring experience that will last about 30-60 minutes. Towards the end of the survey you will be asked to provide your email ONLY if you are interested in participating in this second, optional part of the study. Provide details of your carer OR the patient that you care for so they can also provide their point of view. Towards the end of the survey, you will be asked to provide their email (if they are happy to be contacted about this study).
Who is running the study?The study is being carried out by the following researchers: - Dr. Iris Bartula, Northern Clinical School, Faculty of Medicine and Health, University of Sydney; Melanoma Institute Australia - Prof. Kerry Sherman, Department of Psychology, Macquarie University - Mr. Jake Thompson, Melanoma Institute Australia - A/Prof. Robyn Saw, Melanoma Institute Australia; Sydney School of Medicine, University of Sydney; Royal Prince Alfred Hospital - Prof. Fran Boyle, Patricia Ritchie Centre for Cancer Care, University of Sydney - Ms. Hong Fu, Melanoma Nurse Practitioner, Princess Alexandra Hospital, Queensland - Mrs. Victoria Beedle, Melanoma Patients Australia