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Want to participate in a research study “valuing those that care for people with dementia or Alzheimers Disease”?

Other information:

What is the Aim of the Project?

Support workers and informal caregivers are a vital part of the wellbeing of people as they age.  Valuing and assisting this important group of workers is crucial. In this study we wish to find out about how and what makes support workers and informal caregivers feel valued for the work that they do, and what the main skills and resources they use for caring are. We hope that this information will inform ways in which informal caregivers and paid support workers can be assisted to help those they support.

What Type of Participants are being sought?

We wish to invite 20 paid support workers and 20 informal caregivers who support older adults with memory loss to participate in our study.

What will Participants be Asked to Do?

If you wish to take part in this study please contact the researchers listed at the end of the information sheet. It is up to you whether you wish to inform the organisation you work for or the person you care for that you are taking part in this study or not. If you take part in this study one of our research team will interview you at a mutually agreeable time and venue. The interviews will be audio-recorded. This audio-recording will then be typed out word for word. The interview will take about one hour.

In the interview we will ask you broad open ended questions such as: (1) How can you be supported and valued in the work that you do? (2) What do you consider to be key attributes and skills for your work? (3) How do you think you can best assist the people you support to access health services? (4) What would assist you to provide quality care? (5) What hinders you providing quality care? (6) Tell me about a good caring day? (7) Tell me about a bad day at work. Depending on what you wish to tell us, we may ask other questions. We may also ask if we can briefly interview you again, either in person or by telephone if we have further questions to ask of you or we wish to clarify your answers. This second interview will only take about 20 minutes.

The interview transcripts will be read along with other participants interviews. In our readings we will identify common thoughts or themes. From these themes we will develop an understanding of how informal caregivers and paid support workers can be valued and assisted. We will share a summary of our preliminary findings with you and ask you to tell us if we have understood you correctly or not, to help us refine the findings.

As mentioned above in the interviews we will use an open-questioning technique. The precise nature of the questions which will be asked have not been determined in advance, but will depend on the way in which the interview develops.  Consequently, although the University of Otago Human Ethics Committee is aware of the general areas to be explored in the interview, the Committee has not been able to review the precise questions to be used. In the event that the line of questioning does develop in such a way that you feel hesitant or uncomfortable you are reminded of your right to decline to answer any particular question(s) and also that you may withdraw from the project at any stage without any disadvantage to yourself of any kind.

Please be aware that you may decide not to take part in the project without any disadvantage to yourself of any kind.

There is no payment for taking part in this study. Participants will be reimbursed for any travel expenses they incur as a result of taking part in the study.

What Data or Information will be Collected and What Use will be Made of it?

We will ensure that the information you give us remains anonymous.  Only the researchers working on this project may access your information. The data collected will be securely stored in such a way that only those mentioned will be able to gain access to it.  This information will be kept for at least 5 years in secure storage. Any personal information (such as contact details and audio recordings) may be destroyed at the completion of the research even though the anonymous information from the research will, in most cases, be kept for much longer or possibly indefinitely. Reasonable precautions will be taken to protect and destroy data gathered by email. However, the security of electronically transmitted information cannot be guaranteed.  Caution is advised in the electronic transmission of sensitive material.

The results of the project may be published in scientific journals or presented at scientific meetings, and we may present the results to community groups, such as Age Concern or the Caregiver’s Society. In all publications and presentations every attempt will be made to preserve your anonymity.

You are most welcome to request a copy of the results of the project should you wish.

Can Participants Change their Mind and Withdraw from the Project?

You may withdraw from participation in the project at any time and without any disadvantage to yourself of any kind.

 

Eldernet is in no way associated with this study. If you are interested, please contact the relevant persons.

About Eve Williams

Eve Williams
Eve Williams is the Content Developer and Social Media Administration for Eldernet. She is currently studying towards her Masters at the University of Canterbury. She has a passion for learning new things.