Participant Information Sheet
1. Introduction
Study Title:
Understanding age friendly public libraries for people living with dementia and Alzheimer's in Ireland
Researchers:
Primary Investigator: Dr. Amber L. Cushing PhD, Associate Professor, School of Information and Communication Studies, University College Dublin
2. What is this research about?
This research explores the role of Ireland’s public libraries in age friendly communities for people living with dementia and Alzheimer’s disease. We would like to speak with library workers and dementia and Alzheimer’s community stakeholder groups about the physical environments, collections, programming, and training requirements for public libraries in Ireland to improve the accessibility, relevance, and welcoming of public libraries for older adults living with dementia or Alzheimer’s.3. Why am I doing this research?
Over the next 20 years, Ireland will experience rapid growth in the number of older adults who are 65 years of age or older. This demographic shift will increase demand for space, information resources, programming, and assistance from public libraries as older adults seek to live healthier, more active, and socially connected lives. This research aims to collect information that can support the transformation of Irish public libraries into more age-friendly spaces for people living with dementia or Alzheimer’s whose service needs may differ from other older adults groups.4. How will your data be used?
If you participate in an interview, we will make an audio-recording that we will then create a de-identified transcription of the audio file. Zoom or Microsoft Word will be used to machine transcribe your audio file, which will then be reviewed by the researcher to ensure its accuracy and full de-identification. The de-identified transcript will leave out any identifying information you may provide in the interview and will be saved under a unique pseudonym you provide to ensure your confidentiality.The de-identified transcripts will be used in our thematic analysis using a local copy of nVivo or Atlas.TI software. We will look for key themes and shared experiences across participants that indicate ways to make Irish public libraries age-friendly for people living with dementia or Alzheimer’s disease. We may use portions of your transcript in presentations at academic conferences and/or in manuscripts. We may also use portions of your transcript in social media to disseminate our findings.
Data generated in the study, including transcripts, handwritten notes, and consent forms, will be retained in a password-protected file on a secure University College Dublin server for up to 5 years to give time for the use of data for publications. At the end of the data collection period, all interview audio files will be deleted. At the end of the study, de-identified transcripts will be deposited in University College Dublin’s Research Repository for secondary analysis in accordance with open-science principles.
5. What will happen if you decide to take part in this research study?
You will be asked to participate in an online or telephone interview at a time of your convenience for a duration of 45-60 minutes. Participants will be asked to select a pseudonym and register for the interview using a Google Form. This interview will be conducted by investigator Dr. Robert Douglas Ferguson. The interview will be audio-recorded and he may take handwritten notes that will be digitised and stored on a secure University College Dublin server.If you are a person living with dementia or Alzheimer’s and are unsure about your ability to participate in the research, please discuss this with a support person of your choice and a member of the research team. All participants have the right to have a support person of their choice present at all times during the interview. Only those who retain the capacity to give informed consent can participate in this study.
6. How will I protect your privacy?
Unless requested otherwise, all information you provide during the interview will be kept confidential and your name will not appear in any report or publication of the research. You will be asked to provide a pseudonym, which will be used throughout the interview process. Transcripts will be de-identified or potentially identifying information and audio recordings will be destroyed at the end of the study. We will use the pseudonym you provide in all publications and research outputs.7. What are the benefits of taking part in this research study?
By participating in the interview, you will have the opportunity to share your observations and make suggestions for how we can make public libraries in Ireland more age friendly for people living with dementia or Alzheimer’s. You will also have the opportunity to recommend training for current and future librarians. Participants may find this experience enjoyable and empowering, and you may feel proud about representing your community in research that makes Irish public libraries more inclusive and responsive to the needs of older adults with age-related cognitive challenges. Participants will receive a €20 one-for-all voucher in exchange for their time.8. What are the benefits to the researcher if I take part in this study?
From your participation, the researchers will benefit from a better understanding of the ways in which the library’s physical environment, collections, programming, and the training of librarians can be adapted to be more welcoming, accessible, and relevant to people living with dementia and Alzheimer’s disease. The researchers will also benefit through the opportunity to disseminate the results in academic journals, conferences and professional settings.9. What are the risks of taking part in this research study?
There are minimal risks to participation. Some participants may experience mild negative emotions (e.g., frustration, anger, sadness) when reflecting on deficiencies of existing library physical spaces, collections, programming, and training. You will never be pressured or compelled to answer any questions nor to share anything you do not wish to share. Some participants may also experience mild fatigue from answering questions. If you feel negative emotions or fatigue, you can choose to pause the interview for as long as required or end the interview at any time.10. Can I change my mind at any stage and withdraw from the study?
Yes, you can end the interview and withdraw from the study without penalty at any time. If you change your mind, would like to end the interview, and withdraw from the study, please inform the researcher. Any communications, audio-recordings, and handwritten notes will be destroyed immediately and not included in the final analysis or any research output.11. How will I find out what happens with this project?
You can learn more about the survey’s results and access the information resources developed from it by visiting the researcher’s website at www.robertdouglasferguson.com.12. What can I do if I have any questions or concerns about this research?
Please contact the investigator Dr. Robert Douglas Ferguson by email at robert.ferguson@ucd.ie. You can also contact the primary investigator Dr. Amber L Cushing at amber.cushing@ucd.ie or 01 716 8441.This study was ethically reviewed and approved by University College Dublin’s Human Research Ethics Committee 122-HS-C-25-Ferguson-Cushing.
This research is supported under the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No 101034252.