Welcome to the survey on "Providing care and support for parents of premature babies at home: Health Visitor (HV) and nursing knowledge”.
In Australia and the UK, around 9% of babies are born prematurely (before 37 weeks’ gestation) every year. Most babies who are premature are born between 32 and 36 weeks’ gestation, and almost all of these babies grow up to be healthy children. More babies of extreme prematurity (27 weeks’ gestation and less) are surviving, and it is likely that health visitors and nurses in acute care and the community are likely to come into contact with these growing babies and their parents. These growing extremely premature babies have ongoing needs for health care services because they are more likely to have ongoing chronic illness, hearing or eyesight problems, movement disabilities, learning difficulties, developmental delay and behavioural problems.
We are a group of researchers from the University of Technology Sydney (Australia) and the University of Hertfordshire (UK). The purpose of this research/online survey is to find out about your experiences, current knowledge and perceived learning needs about caring for extremely premature babies who are now growing in the community after discharge from the neonatal intensive care unit/nursery.
The survey has 3 sections. The first section is some general demographic information, the second section is about your role and the final section is about your current and future educational needs.
The survey has 30 questions and should take no longer than 20 minutes to complete.
There are no right or wrong answers! Please complete all of the questions as honestly as possible. You can skip a question if needed. You can also stop the survey and come back to complete it.
You can change your mind at any time and stop completing the survey without consequences.
There is also the option to leave your details at the end of the survey, or contact the researchers directly if you wish to participate in a short interview regarding your experience working with growing premature babies. Interviews will either be face-to-face or hosted via skype. You will be provided with more information prior to interviews taking place, if you wish to participate in an interview[j1] . [j1]In response to including information about survey in participant information prior to survey.
If you have an concerns about the research that you think we can help you with, please contact any of us at:
University of Technology Sydney
Dr. Janet Green: Chief Investigator; Janet.Green@uts.edu.au; +61 2 9514 5740
Professor Catherine Fowler: Chief Investigator; Cathrine.Fowler@uts.edu.au; +61 2 9514 4847
Professor Doug Elliot: Chief Investigator; Doug.Elliott@uts.edu.au; +61 2 9514 4832
Ms Chris Rossiter: Research assistant Christine.Rossiter@uts.edu.au; +61 2 9514 4860
University of Hertfordshire
Dr Lisa Whiting: Chief Ivestigator;L.Whiting@herts.ac.uk
Ms Julia Petty: Chief Investigator; J.Petty@herts.ac.uk
Risks/benefits to the participants
Risks to you are minimal, and benefits are expected to outweigh any risks of participation. Although there are no direct or immediate benefits to you by participating in the study, you will be sharing valuable insights about your experience with extremely premature babies who are growing. Your experiences will contribute to a better understanding of nursing staff who care for ex premature babies in hospital and the community, and the specific knowledge and skills that are required to support these infants and their families.
NOTE: There is a possibility that recalling negative events may cause you to feel upset or distressed. If you feel uncomfortable revisiting these issues, you are free to discontinue your participation. Please consider seeking the advice of a professional counselling service if needed.
Costs and payments to the participants
There are no costs to you or payments made for participating in this survey
Confidentiality
You will not be asked for any information in this survey that could be linked to you. All information is stored online by Survey Gizmo which is secure and encrypted. All information obtained in this survey will be strictly confidential and no individuals or institutions will be identified in any reporting.
If you agree to be part of the research and to research data gathered from this survey to be published in a form that does not identify you, please continue with answering the survey questions.
NOTE:
This study has been approved by the University of Technology, Sydney Human Research Ethics Committee. If you have any complaints or reservations about any aspect of your participation in this research which you cannot resolve with the researcher, you may contact the Ethics Committee through the Research Ethics Officer (ph: +61 2 9514 2478 Research.Ethics@uts.edu.au), and quote the UTS HREC reference number. Any complaint you make will be treated in confidence and investigated fully and you will be informed of the outcome.