Opportunity for Participation – Primary Carers

12, Feb 2018

Primary Carers’ Perspectives on Respite Care for Children with Rare and Genetic Diseases

What is the Project About?

Primary carers provide most of the informal assistance to children with rare and genetic diseases. As a result, primary carers experience high levels of stress and isolation from their communities. Respite care provides short breaks to primary carers and has effectively reduced stress. However, rules and regulations of respite care services may make it challenging to access them. Frequent changes in staffing also affected the trust and confidence primary carers have towards staff and the quality of care provided. These findings were not conducted on respite care services for children with rare and genetic diseases but those with complex health needs, life-limiting conditions or children receiving palliative care. As such, we do not know much about respite care services specifically for children with rare and genetic diseases and their primary carers.

This pilot study will focus on understanding what WA primary carers of children with rare and genetic diseases think about current respite care services and their positive and/or negative experiences of it. We will be interviewing 10 to 15 WA primary carers of children with rare and genetic diseases under the age of 18, who are currently accessing, wish to access, or have accessed respite care services in the last five years. This study could help Genetic and Rare Diseases Network to work with other organisations to influence policies, guide recommendations and improve respite care services to meet the needs of children with rare and genetic diseases and their primary carers. The study also helps us to understand the perspectives and experiences of some primary carers in WA on respite care services, and could assist in the formulation of questions for a larger study involving primary carers across WA.

Who is doing the Research?

The project is being conducted by Suat Kee Tieh, and is part of an Honours program. This research project is funded by Curtin University.

Why am I being asked to take part and what will I have to do?

You are invited to take part in this study because of your personal experience and knowledge on respite care services for children with rare and genetic diseases. Your participation will involve an interview session with the student researcher who will be asking questions related to respite care services for children with rare and genetic diseases, including your experience with the services, and the types and frequency of services used.

The study will take place at the Niche, or a room in Independent Living Centre or any other location that is convenient for you, and the interview will take approximately 45 minutes to an hour. There will be no costs to you and you will receive a Coles/Myer voucher as a reimbursement for your time for participating in this project. We will also give you up to $15 to cover your car parking while you attend appointments. We will make a digital audio recording so we can concentrate on what you have to say and not distract ourselves with taking notes. After the interview we will make a full written copy of the recording.

Are there any benefits’ to being in the research project?

Sometimes, people appreciate the opportunity to discuss their opinions/ feelings. We hope the results of this research will allow us to:

  • add to the knowledge we have about respite care services for children with rare and genetic diseases and their primary carers
  • improve advocacy for children with rare and genetic diseases and their primary carers
  • influence policies and improve services related to respite care
  • inform practice guidelines and the provision of respite care services
  • formulate questions for a larger study involving primary carers across WA

Are there any risks, side-effects, discomforts or inconveniences from being in the research project?

We have been careful to make sure that the questions in the interviews do not cause you any distress. But, if you feel anxious about any of the questions, you do not need to answer them.  If the questions cause any concerns or upset you, we can refer you to a counsellor. During the research project we may find out new information about the risks and benefits of this study. If this happens we will tell you the new information and what it means to you. It may be that this new information means that you can no longer be in the study or you may choose to keep going or to leave the study. You might be asked to sign a new consent form to let us know you understand any new information we have told you.

Who will have access to my information?

The information collected in this research will be re-identifiable (coded). This means that the stored information will be re-identifiable which means we will remove identifying information on any data or sample and replace it with a code. Only the research team have access to the code to match your name if it is necessary to do so.  Any information we collect will be treated as confidential and used only in this project unless otherwise specified. The following people will have access to the information we collect in this research: the research team and the Curtin University Ethics Committee. We would like you to consider allowing us to send you information about future research projects. Once you receive the information it is your choice if you decide to take part or not.

Electronic data will be password-protected and hard copy data (including video or audio tapes) will be in locked storage. The information we collect in this study will be kept under secure conditions at Curtin University for 7 years after the research has ended and then it will be destroyed. You have the right to access, and request correction of, your information in accordance with relevant privacy laws. The results of this research may be presented at conferences or published in professional journals. You will not be identified in any results that are published or presented.

Will you tell me the results of the research?

We will write to you at the end of the research and let you know the results of the research. Results will not be individual but based on all the information we collect and review as part of the research. We may make the results available in publication in peer-reviewed journal, conference presentation and industry partner report or presentation in format or as requested by Genetic and Rare Diseases Network.

Do I have to take part in the research project?

Taking part in a research project is voluntary. If you decide to take part and then change your mind, that is okay, you can withdraw from the project. You do not have to give us a reason; just tell us that you want to stop. Please let us know you want to stop so we can make sure you are aware of any thing that needs to be done so you can withdraw safely. If you choose not to take part or start and then stop the study, it will not affect your relationship with the University, staff or colleagues. If you chose to leave the study we will use any information collected unless you tell us not to.

What happens next and who can I contact about the research?

You can contact Suat Kee Tieh (suatkee.tieh@student.curtin.edu.au) or Courtenay Harris (C.Harris@curtin.edu.au or 08 9266 3683) to obtain further information or if you have any questions about this research.

If you decide to take part in this research we will ask you to sign the consent form. By signing it is telling us that you understand what you have read and what has been discussed. Signing the consent indicates that you agree to be in the research project and have your health information used as described. Please take your time and ask any questions you have before you decide what to do. You will be given a copy of this information and the consent form to keep.

Curtin University Human Research Ethics Committee (HREC) has approved this study (HREC number HRE2017-0801). Should you wish to discuss the study with someone not directly involved, in particular, any matters concerning the conduct of the study or your rights as a participant, or you wish to make a confidential complaint, you may contact the Ethics Officer on (08) 9266 9223 or the Manager, Research Integrity on (08) 9266 7093 or email hrec@curtin.edu.au.


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