ABC4Nurses Participant Information Leaflet and Consent
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  • Participant Information Leaflet: Evaluation
    ABC4Nurses: Quality of care improvement in metastatic breast cancer patients

     
    Principal Investigator:Dr Amanda Drury, Associate Professor in General Nursing
    School of Nursing, Psychotherapy and Community Health,
    Dublin City University,
    Glasnevin,
    Dublin 

    E-mail: amanda.drury@dcu.ie.
    Research Team Members

    Professor Theresa Wiseman, The Royal Marsden NHS Foundation Trust & University of Southampton, United Kingdom.
    Dr Gulcan Bagcivan, Koc University, Istanbul, Turkey.
    Dr Grigorios Kotronoulas, University of Glasgow, Glasgow, United Kingdom.
    Ms Celia Diez de Los Rios, European Oncology Nursing Society, Brussels, Belgium.
    Ms Iveta Nohavova, , European Oncology Nursing Society, Brussels, Belgium.
    Ms Amanda Shewbridge, Breast Cancer Now, United Kingdom. 

    Dr Maura Dowling, University of Galway, Galway, Ireland.

    Ms Sarah Sheehan, University College Dublin, Ireland.
    Ms Sema Erdem, Europa Donna, Turkey.
    Ms Violet Aroyo, Europa Donna, Turkey.


    You are being invited to take part in a research study led by Dr Amanda Drury who is a nurse researcher from Dublin City University. This information sheet is to help you decide if you would like to take part in a research study to evaluate an advanced breast cancer care online education programme.

    Before you decide whether or not you wish to take part, please read this information leaflet carefully.
    You are being invited to take part in a research study. Before you decide, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Ask us if there is anything that is not clear or if you would like more information.

    This study is funded by Pfizer. This study will be conducted independently by the research team, and the funding body will not have any impact on the conduct of this study or dissemination of the study results.

     

  • What is this research about?

    We would like to evaluate an online education programme, teaching nurses specialist knowledge and skills in advanced breast cancer care

  • Why are we doing this research?

    This study will help to evaluate whether the online education programme meets the objectives for specialist training in advanced breast cancer care and the impact of the programme on the learning and behaviour of nurses.

  • Why have I been invited to take part?
    You are being invited to take part in this study as you have registered to study the ABC4Nurses online education programme. You are eligible to take part in this study if you are:

    1) A registered nurse,
    2) Primarily work in cancer nursing, and
    3) Speak, read and write in either English, Spanish, Turkish or Czech.

  • What will happen if I decide to take part in this research study?
    If you choose to participate in this study, you will be asked to complete:
    1) A pre-programme questionnaire (10-15 minutes) about your expectations for the programme, and
    2) An end of programme questionnaire (10-15 minutes) about your experiences of the programme.
     
    After completion of the questionnaire and online education programme you may opt in to participate in a 30–40-minute interview about your experience. These interviews will take place on Zoom and will be recorded for the purpose of the research. Interviews will be conducted in English, Turkish, Spanish and Czech according to your preference and will be recorded.

    We would also like to understand the impact of learning from this programme in clinical practice. To assist this, we wish to interview a small number of clinical managers or supervisors of nurses who have taken part in the programme. To facilitate this, we ask that participants of the programme would share information about this study with their line manager, to consider their willingness to take part in the study. Interviews with line managers are only concerned with the impact of the education programme. The interviews are not concerned with the job performance of any individuals, it aims to understand the clinical impact of the training programme only. No information about you or your participation in the educational programme or the evaluation study will be disclosed by the researchers to a manager who participates in the study.

    We will ask for your electronic consent before you participate in the study. The consent form is included after this information sheet, and can be used to indicate which components of the study you wish to take part in. By completing any subsequent questionnaires associated with this study, it will imply your continued consent.

  • Do I have to take part?
    You may study the ABC4Nurses programme without participating in the evaluation. Alternatively, you may participate in the evaluation to the extent you are interested (e.g. participating in questionnaires, but not an interview). Your decision to participate or not participate in this study will not affect your access to or experience of the ABC4Nurses education programme.

  • Can I change my mind at any stage and withdraw from the study?
    If you decide to take part and then change your mind, you can leave the study at any time. You do not have to give us a reason. Should you wish to withdraw from the study, we will destroy any personal data which could be used to identify you. If you withdraw from the study, we will keep anonymised interview and survey data that we have already collected, as we need to manage your information in specific ways to ensure the research is reliable and accurate. You may withdraw from the study by contacting Dr Amanda Drury via email at amanda.drury@dcu.ie.

  • What are the benefits of taking part in this research study?
    By taking part in the evaluation of the ABC4Nurses programme you will provide information that will help us to understand the impact of the programme, and areas which could benefit from revision or improvement.

  • What are the potential risks of taking part in this research study?
    There are no anticipated risks in taking part in the study.

  • How will I find out what happens with this project?
    If you wish, we will send you a written copy of the study results.

  • How will my data be used?
    We will be using your name and email address to contact you about the research study, and to support data collection procedures. We will not keep your name or contact information once the study is completed. You will be asked some demographic questions in the survey to provide background information for the study, including your age, gender, clinical role and country of residence.

  • How will my privacy be protected?
    All information which is collected about you, or responses that you provide, during this study will be kept strictly confidential. You will be asked to generate an identifier code from questions in the consent form. The same questions will be used to generate your unique identifier in each of the following questionnaires. This identifier will be used to ensure your responses remain confidential and to enable us to link each round of the survey throughout the duration of the project. Any information you share will have your name and email address removed so that you cannot be recognised from it. Please note that assurances on confidentiality will be strictly adhered to.

    Your name and contact information will be stored in a password protected database on a secure, encrypted folder which will only be accessible by members of the research team with responsibility for conducting this study. We will not keep your name or contact information once the study ends, including the recording of your interview. After this time, your personal information will be removed from the participant database.

    Your consent form will be retained for seven years after completion of the study. After that time, Dr Amanda Drury will destroy all data relating to the study.

  • Will my personal data be used in future studies?
    The data collected for the purpose of this study will not be used in future studies.

  • What is the lawful basis to use my personal data?
    We are carrying out this research in the public interest and will process personal data for scientific research purposes under Articles 6(1)(a)(e) and 9(2)(j) of the General Data Protection Regulations (2018). This means that we will only use your data in the ways needed to conduct the research study.

  • What are my rights?
    As a participant in this research study, you have a number of rights under data protection (GDPR) regulations:

    • You have the right to access all personal information held about you by the researchers.
    • You have the right to change or request deletion of personally identifiable information held about you for the purpose of this research, including your name, address or contact information.
    • You have the right to data portability; this means you may request the research team move, copy or transfer your personal information to other organisations or services in a readable format. 
    • You have the right to restrict or object to the processing of personally identifiable information.


    Should you wish to withdraw from the study, we will destroy any personal data which could be used to identify you. If you withdraw from the study, we will keep the data that we have already collected, as we need to manage your information in specific ways to ensure the research is reliable and accurate. You may withdraw from the study by contacting Dr Amanda Drury via email at amanda.drury@dcu.ie.

    If you have any concerns about this study and wish to contact someone independent and in confidence, you may contact:

    Under GDPR, if you are not satisfied with how your data is being processed, you have the right to lodge a complaint with the Office of the Data Protection Commission, 21 Fitzwilliam Square South, Dublin 2, Ireland. Website: www.dataprotection.ie.

  • Ethical Permission:
    This study has received ethical approval from University College Dublin Human Research Ethics Committee and Dublin City University Research Ethics Committee.

  • Indemnity:
    This study is covered by standard institutional indemnity insurance. Nothing in this document restricts or curtails your rights.

  • Contact details for further information:
    Dr Amanda Drury, Associate Professor in General Nursing
    School of Nursing, Psychotherapy and Community Health,
    Dublin City University,
    Glasnevin,
    Dublin 

    E-mail: amanda.drury@dcu.ie

  • Thank you for taking the time to read this information sheet. If you still have questions, please do not hesitate to contact the researchers who are conducting this study using the details provided.

That's all, folks!

* End page and disqualification logic can only be seen in the live survey

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