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Genomics and Nursing in Australian & New Zealand PICU's

Invitation to Participate


Paediatric Intensive Care Unit Nurses,
 
Researchers at the University of Sydney are seeking Registered Nurses working in Australian or New Zealand Paediatric Intensive Care Units (PICU’s) to be involved in this research study.
 
You are invited to participate in this online survey if you are a Registered Nurse currently working in an Australian or New Zealand PICU.
 
The aim of this research is to understand how your patients’ DNA and genetic family history relate to the care you provide.
 
Even if you don’t feel your clinical practice has much to do with genetics, we highly value your opinion and perspective on the issue, as we are trying to understand your experience of nursing in the Genomic Healthcare era.
 
As a participant of this survey, you will be contributing to information that will inform models of support for PICU nursing practice in the future.
 
Your answers are anonymous and will not personally identify you. We expect that this survey will take 5 minutes to complete. 
 
If you have any questions about the project or would like a copy of the participant information sheet, then please contact the lead researcher Christina Whitehead, at Christina.Whitehead@sydney.edu.au  
 
This project has been approved by the Nepean Blue Mountains Local Health District Human Research Ethics Committee as low or negligible risk research. If you have any concerns about the conduct of the survey, or your rights as a survey participant, you should contact:
 
The Nepean Blue Mountains Local Health District HREC Ethics Officer, at NBMLHD-Ethics@health.nsw.gov.au.
 
Quote Project Ref. No: 2022/ETH01189

To start the survey click OK below.

Before we start, here are some helpful definitions;
 
Genomics is the study of our DNA and the role our genes play in disease and health. Genomic technology and tests can help determine disease risk, diagnose, and be used to guide treatment options. Genomic healthcare takes into account the potential ethical, psychological and social implications of genomic information for patients and their families.

Genetic tests look at specific groups of genes to check for variations that are known to be related to certain diseases or health states.

Genomic tests look at the whole genome (DNA) of a person usually to identify variations that a person may not be aware are present, and may or may not be linked to disease
1.Participant Information Sheet

Project Title: Genomic Healthcare: Paediatric Intensive Care Unit (PICU) Nurse Perspectives Survey

 

Investigators: Christina Whitehead, A/Professor Stuart Lane

 

Organisation: University of Sydney, Faculty of Medicine & Health.

 

Who can participate in the survey?

 

To ensure responses reflect contemporary clinical practice we are asking registered nurses who currently work within a Paediatric Intensive Care Unit (PICU). Any registered nurse providing either direct or indirect patient care working in an Australian or New Zealand PICU is invited to participate in this survey. 

 

What does my participation involve?

 

Complete an anonymous survey, anticipated to take 5 minutes. 

 You are invited to participate if you are a registered nurse currently working in a PICU in Australia or New Zealand. You are receiving this invitation for participation because you are a mailing list member of a professional nursing group that supports paediatric Intensive Care nurses, (e.g. ACCCN, NZCCCN, ANZICS-PSG, ACN).

  

Participation in this survey is voluntary. If you don’t wish to take part, you don’t have to.

 

The aim of this research is to explore the current clinical practice of Australian and New Zealand nurses as it relates to engagement with genomic healthcare.

 

What are the expected benefits and risks of the study?

 

Benefits: Your participation in this research may not benefit you directly. However, it is hoped that this research will support the education and learning needs of PICU nurses in the future.

 

Risks: There is negligible risk to you in participating in this research and is no more than the inconvenience of time spent. We have consciously kept the survey brief so as not to be onerous for participants.

 

How will data be collected and stored?

 

Data will be kept securely on a restricted access storage drive, within a secure drive owned by the lead researcher. Given the unidentifiable nature of the data, it won’t be possible to remove your submitted survey responses once submitted. At the end of the survey you will be given the option to leave an email address to express your interest in participating in a subsequent phase of the research, in the form of an interview. If you choose to do so, your contact details will not be linked to your previous survey responses, so as to maintain anonymity between you and your responses.  

 

Who has reviewed the research project?

                       

All research in Australia and New Zealand involving humans is reviewed by an independent group of people called a Human Research Ethics Committee (HREC). The ethical aspects of this research project have been approved by the HREC of the Nepean Blue Mountains Local Health District.

 

This project will be carried out according to the National Statement on Ethical Conduct in Human Research (updated 2018). This statement has been developed to protect the interests of people who agree to participate in human research studies.

 

Complaints can be made to NBMLHD-Ethics@health.nsw.gov.au.
2.Are you a Registered Nurse currently working in an Australian or New Zealand PICU?(Required.)
3.Are you also a Registered Midwife?(Required.)
4.Your Clinical Practice - 

Select all the answers that applied to your clinical practice in the last 6 months.(Required.)
5.Your views on genomics - (Required.)
Strongly agree
Somewhat agree
Undecided
Somewhat disagree
Strongly disagree
PICU nurses should keep up to date with current genomic technology, tests, and knowledge
Continued professional development in genomics should be encouraged for all PICU nurses
I have a good awareness of how genomics affects my area of practice
Genomics is not relevant to my current practice
Developments in genomics offer real potential to improve health outcomes for PICU patients and their families
Genomics is not a priority for me in my practice currently
I would like to incorporate genomics more as part of my everyday practice
6.Education & Training - 

Which answers best describe your exposure to genomics education and training? Select all that apply to you.(Required.)
7.Global standards - 

The following four statements are global 'competencies' that are commonly used to guide nursing practice in genomics in other parts of the world, particularly the UK and the USA. Indicate how relevant you feel these competencies are in your PICU nursing practice(Required.)
Not relevant
Somewhat relevant
Essential
Identifying individuals who might benefit from genomic services and/or information through a comprehensive nursing assessment
Demonstrating knowledge and understanding of the role of genomic factors on disease and risk of disease, to underpin effective practice
Applying knowledge and understanding of the utility and limitations of genomic information and testing to underpin care and support for individuals and families prior to, during, and following decision making
Obtaining and communicating credible, current information about genomics, for self, patients, families and colleagues
8.Workplace support and environment - (Required.)
Yes
Unsure
No
Would your line manager support your attendance at a genomics training course? eg. grant you paid study leave
Would you be willing to attend genomic professional development activity in your personal, unpaid time?
Do senior nursing staff encourage, or do you think they would encourage, you to apply new knowledge about genomics to your practice?
Do you think your colleagues expect you to have some sort of knowledge of genomics?
Is there someone in your workplace you feel you could approach for advice on genomic concepts?
Do you think your workplace values the genomic knowledge of nurses?
9.About you - 

What is your highest qualification?(Required.)
10.How many years have you worked in a PICU?(Required.)
11.Which best describes your current role? Select all that apply to you(Required.)
12.Which region do you currently work in?(Required.)
13.Have your say...

If you have any comments or views (positive or negative) that you would like to share in relation to genomics and your nursing practice and/or genomics in the PICU setting, we welcome your comments here.
14.If you are interested in being contacted for participation in future research, exploring through interviews, how PICU nurses engage with genomics, please provide your name and contact email so as you can be contacted by the primary researcher of this project. Your name and email will not be linked to your responses in the survey.

Thank you kindly for your participation in this survey.
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