19/07/2023
PARTICIPANT INFORMATION SHEET
Project Title: The ways in which the voice of persons living with a life-limiting illness is expressed during interactions with healthcare professionals. A hermeneutic phenomenological exposition
Invitation
You are invited to take part in a study that aims to understand your experiences and perceptions about expressing your views during interactions with nurses, doctors, physiotherapists, social workers, and other healthcare workers. This letter will give you the information required to make an informed decision regarding taking part in this study. Detailed information about what your role in this study involves will be given. You can keep the participant information sheet as a record of the details of the research you were involved in. Knowing what is involved will help you decide if you want to take part in the research. Please read this sheet carefully and ask questions about anything that you do not understand or want to know more about. Participation in this research study is voluntary.
The following researchers are carrying out the study:
1. Nqobile Sikhosana -Ph.D. research candidate University of Wollongong, Australia.
2. Professor Ritin Fernandez -Professor of Nursing, School of Nursing, University of Newcastle, Australia.
3. Professor Lorna Moxham- Professor of Mental Health Nursing, School of Nursing, University of Wollongong, Australia.
1. What is the purpose of this study?
The purpose of this study is to (1) understand your experiences and perceptions about expressing your views during interactions with nurses, doctors, physiotherapists, social workers, and other healthcare workers.
Why have I been invited to participate in this study?
You are eligible to participate in this study because you have experience in living with a potentially life-limiting illness and engaging in conversations with nurses, doctors, physiotherapists, social workers, and other healthcare workers.
2. ‘What does this study involve?’
You will be asked to participate in an audio-recorded interview with your consent. The interview will be conducted at your usual home address. However, should you wish for another place where you feel comfortable, the researchers are willing to adjust accordingly. If for any reason you cannot be interviewed in person, telephone, zoom or Microsoft teams interviews can be arranged. The Interview will consist of flexible questions about your experience and is expected to last for about an hour. The questions that you will be asked are about your experiences during interactions with nurses, doctors, physiotherapists, social workers, and other healthcare workers. An example of the type of questions that will be asked is as follows: I am interested in understanding your experience during conversations with nurses, doctors, physiotherapists, social workers, and other healthcare workers.
Probes:
a) Were you able to share your thoughts, feelings views, and beliefs?
b) Do you feel people listened to you?
c) What aspects of the conversation do you feel helped or prevented you from sharing your views, thoughts, feelings, and preferences?
d) Did you get asked about your thoughts, feelings, views, and preferences?
3. What do I need to do to participate in this study?
If you want to participate in this study, please call or email the following researchers:
Nqobile Sikhosana- Co-investigator/Student/Study co-ordinator
Email 451@uowmail.edu.au
Mobile: 0451051231
Professor Ritin Fernandez- chief investigator and principal supervisor
Tel T +61 (02) 4048 4184
M: +61 (0)400827173
Email: ritin.Fernandez@newcastle.edu.au
Professor Lorna Moxham- Co-Supervisor and Co-investigator
T + 61 2 4239 2559
Email: lmoxham@uow.edu.au
4. What if I don’t want to take part in this study, or if I want to withdraw later?
Participating in this study is completely voluntary, you are not under any obligation to consent or complete the interview. If you do consent, you can withdraw at any time during or up to 2 weeks after the interview. Your non-participation or withdrawal will not affect your relationship with healthcare services or healthcare workers helping you.
How is this study being paid for?
This is a non-funded study conducted by the principal researcher and his supervisors as part of Ph.D. research activities.
5. Are there risks to me in taking part in this study?
Questions about your experiences may bring up disturbing memories and emotional distress. and should there be any concerns, the researchers will signpost you to the relevant counseling services. Rossmoyne waters independent living has a 24-hour counseling service, and you can reach it by calling 0893544133 or by mobile at 0418946246. You also have an option of contacting the Mental Health Emergency Response Line on 1300 555 788.
6. What are the alternatives to participation?
You do not have to take part in this research project to continue receiving the care that you are getting. If you decide not to participate, your healthcare needs will continue as usual.
7. Will I benefit from the study?
Although you may not directly benefit from this study, sharing your experiences will contribute by potentially informing healthcare professionals and policymakers to draw up policies, standards, and quality indicators, which are informed by those who experience the illness.
8. Will taking part in this study cost me anything, and will I be paid?
Aside from giving up your time, participation in this study will not cost you anything. There are no payments made to study participants. A gratuity of $25 voucher will be given to you after the interview.
9. How will my confidentiality be protected?
Confidentiality is assured, as no individual participant will be identified in any part of the research or any reports, publications, or presentations stemming from the study. A pseudonym chosen by you will be used in any publication. Therefore, it is not possible to identify your interview responses from the pool of responses provided by other people who participated in the study.
All identifiable interview audio recordings will be stored securely on the University of Wollongong Storage Grid. De-identified data will be stored securely on the University of Wollongong Cloudstor. All data will be stored for five years following the publication of results before being permanently destroyed as per the Australian Code for the Responsible Conduct of Research 2007.
10. What happens with the results?
Findings from the study will be disseminated via peer-reviewed publications in Nursing Journals, at national and international conferences, and at Nursing grand rounds. Furthermore, the results can also be obtained by directly contacting the researchers if they would like to be provided with a summary of the results. The option to get the findings of this research is provided in the consent form.
11. Is the information that I provide going to be used in future research?
The data collected during this interview may be used in future research related to this study.
12. Under what conditions will the data that I provide be accessed for future research?
Only non-identifiable data will be accessed for future research. The non-identifiable data may be shared with other researchers not listed in this project and the use of this data in the future will be subject to ethics review and approval.
13. What should I do if I want to discuss this study further before I decide?
If after reading this information, you still have any questions relating to this study please contact any one of the researchers using the contact details provided in item four of this participant information sheet.
14. Who should I contact if I have concerns about the conduct of this study?
This study was reviewed by the University of Wollongong Human Research Ethics Committee (reference: 2022/360). Any person with concerns or complaints about the conduct of this study should contact the Research Support Office which is nominated to receive complaints from research participants. You should contact them on T + 61 2 42392191 | Mon-Wed, or email mailto:uow-humanethics@uow.edu.au
Thank you for taking the time to consider this study.
