A Proposal to Investigate Polish Immigrants' Experiences of Public Libraries in Edmonton

Appendix A: HERO Ethics Application

HERO – New Study Ethics Application Form

1.1 Study Identification – EEASJ Application

2.0 Study Title: Polish Immigrants' Experiences of Public Libraries in Edmonton

5.0 Name of Principal Investigator (at the University of Alberta, Caritas, or Capital Health): Agnieszka Hayes

6.0 Investigator's Supervisor (Required for graduate students, trainees, or researchers from Capital Health, Caritas who do not have a University of Alberta academic appointment): Dr. Lisa Given, School of Library and Information Studies

7.0 Type of study:

1.3 Study Funding Information

1.0 Type of Funding:

2.0 Funding Source

2.2 Write the Sponsor/Agency name(s) in full (you may add multiple funding sources): Not applicable

3.0 Location of funding source (required if study is funded): Not applicable

1.4 Conflict of Interest

1.0 Are any of the investigators or their immediate family receiving any personal remuneration (including investigator payments and recruitment incentives but excluding trainee remuneration or graduate student stipends) from the funding of this study that is not accounted for in the study budget?

If YES, explain: Not applicable

2.0 Do any of investigators or their immediate family have any proprietary interests in the product under study or the outcome of the research including patents, trademarks, copyrights, and licensing agreements?

7.0 Do you have any other relationship, financial or non-financial, that, if not disclosed, could be construed as a conflict of interest?

If YES, explain: Not applicable

If you answered YES to any of the questions above, you may be contacted by the REB for more information or asked to submit a Conflict of Interest Declaration.

1.5 Study Locations and Sites

1.0 Specify research locations: Interviews will be conducted in participants' homes. The permission form is appended. Transcription and analysis of interviews will occur in the researcher's home office.

3.0 If the study involves researchers in other institution(s), will ethics approval be sought from other institutions/organizations (e.g. another university, Alberta Cancer Board, school district board, etc)?

If YES, provide a list: Not applicable

2.1 Study Objectives and Design

1.0 Proposed Start Date: September 7, 2010

2.0 Proposed Start Date of working with human participants (can be the same as item 1.0): September 7, 2010

3.0 Anticipated End Date of working with human participants: December 28, 2010

3.1 Risk Assessment

1.0 After reviewing the Minimal Risk Criteria (inserted from User Help), provide your assessment of the risk classification for this study:
Per the Tri-council Policy Statement, the standard of minimal risk is commonly defined as follows: if potential participants can reasonably be expected to regard the probability and magnitude of possible harms implied by participation in the research to be no greater than those encountered by the subject in those aspects of his or her everyday life that relate to the research, then the research can be regarded as within the range of minimal risk. Above the threshold of minimal risk, the research warrants a higher degree of scrutiny and greater provision for the protection of the interests of prospective participants.

2.0 In a scale of 0 to 10 where 0 = No Likelihood, 5 = Moderate Likelihood and 10 = Extreme Likelihood, put a numerical rating in response to each of the following:
Rate Description of Potential Risks and Discomforts

3.0 Provide details of short- and long-term risks and discomforts:
Participants may experience discomfort during the interview while recounting unpleasant experiences. They may become tired over the course of the hour-long interview. There are no reasonably foreseeable short- or long-term risks resulting from their participation.

4.0 Describe how you will manage and minimize risks and discomforts, as well as mitigate harm:
The interview will be conducted with a semi-structured schedule of open-ended questions. Participants are free to disclose as much information as they wish, and are equally free to withhold any information. They are also free to withdraw from the study during the interview. They are free to withdraw any and all of their data from the study by December 28, 2010. These rights will be included on the informed consent form. If the researcher notes discomfort in participants, she will remind them of their right to withhold information, their right to refuse answering any questions, and their right to withdraw from the study.

5.0 If your study has the potential to identify individuals that are upset, distressed, or disturbed, or individuals warranting medical attention, describe the arrangements made to try to assist these individuals. Explain if no arrangements have been made:
If individuals are upset, distressed, or disturbed, the researcher will provide them with contact information for the Assessment and Counselling Services provided by the City of Edmonton. If individuals warrant medical attention, the researcher will assist them by calling an ambulance. Since she is not a medical professional, she will not attempt to intervene in any treatment of the participants.

3.2 Benefits Analysis

1.0 Describe any benefits of the proposed research to the participants:
Participants will be able to express themselves and have their opinions about public libraries heard. They may also learn more about themselves. The dissemination of the study report may change professional practice, and therefore improve the public library experiences of the participants specifically, and the population which they represent in general.

2.0 Describe the scientific and/or scholarly benefits of the proposed research:
This study will benefit LIS scholarship by exploring the attitudes and needs of a seldom studied ethno-linguistic group that has a significant presence in Canada.

3.0 Describe any benefits of the proposed research to society:
Suggestions implemented as a result of the findings of this study will improve the public library experiences of the specific ethno-linguistic group being studied, which may improve the public library experiences of the general population.

4.0 Benefits/Risks Analysis - describe the relationship of benefits to risk of participation in the research:
Although some participants may experience discomfort at revealing certain information, they may benefit by influencing changes in public libraries that will allow them to use libraries more effectively.

4.1 Participant Information

1.0 Describe and justify the inclusion criteria for participants:
The participants will be first-generation Polish immigrants who lived in Communist Poland, since the study is investigating whether Polish immigrants' experiences in public libraries in Communist Poland affect their experiences with public libraries in Edmonton. Participants must live in Edmonton, so as to be able to apply for an Edmonton Public Library membership.

2.0 Describe and justify the exclusion criteria for participants:
Participants are restricted to first-generation immigrants, since this group faces unique challenges regarding integration into a new society and retaining links with their previous society. Polish immigrants that did not live in Communist Poland are excluded from this study, since they cannot comment on experiences in public libraries under the Communist government. Residents of areas outside of Edmonton are excluded, since they face more challenges in obtaining Edmonton Public Library memberships.

3.0 Are there any direct recruitment activities for this study? Yes.

4.0 Participants

Total number of participants you expect to enroll (if applicable):
Thirty (30)

If this is a multi-site study, how many participants (including controls, if applicable) do you anticipate will be enrolled in the entire study?
Thirty (30)

5.0 Justification for sample size:
Pre-testing of the interview schedule will be conducted with five (5) participants. It is expected that twenty-five (25) participants will produce data saturation, and therefore will be sufficient to analyze data and draw conclusions.

6.0 If possible, provide expected start and end date of the recruitment/enrollment period:

Expected Start Date: September 7, 2010
Expected End Date: November 23, 2010

4.2 Recruit Potential Participants

1.0 Recruitment

1.1 Will potential participants be recruited through pre-existing relationships with researchers (e.g. employees, students, or patients of research team, acquaintances, own children or family members, etc)?

1.2 If YES, identify the relationship between the researchers and participants that could compromise the freedom to decline (e.g. professor-student). How will you ensure that there is no undue pressure on the potential participants to agree to the study?
Not applicable

2.0 Outline any other means by which participants could be identified (eg. response to advertising such as flyers, posters, ads in newspapers, websites, email, listservs; pre-existing records or existing registries; physician or community organization referrals; longitudinal study, etc):
Potential participants will reply to the researcher's contact information on posters placed in several locations frequented by the Polish community in Edmonton, such as churches, cultural organizations, and merchants. They will also reply to the researcher's contact information included on snowball sampling forms distributed by initial participants.

4.3 Recruitment Contact Methods

1.0 How will initial contact be made? Select all that apply:

2.0 If contact will be made through an intermediary (including snowball sampling), select one of the following:

3.0 If contact will be made through an intermediary, explain why the intermediary is appropriate and describe what steps will be taken to ensure participation is voluntary:
Intermediaries will be able to reach members of the Polish community who may have missed the recruitment posters. Intermediaries will be able to alert their family members and friends about the study, and since they are familiar with the inclusion criteria, they may aid the researcher in selecting only individuals who meet the criteria. Voluntary participation will be ensured through potential participants' initial contact with the researcher. The researcher will not have access to potential participants' contact information, so she will not be able to coerce them into participation. During initial contact, the researcher will verify whether potential participants are being coerced by intermediaries. If she detects any instances of coercion, she will prevent such individuals from participating in the study. All participants will read and sign the informed consent form, which explains the voluntary nature of participation.

4.0 Provide the locations where participants will be recruited, (i.e. educational institutions, facilities in Capital Health or Caritas, etc):

Our Lady Queen of Poland Roman Catholic Church
9906 83 Ave.
Edmonton, AB T6E 2C1

Holy Rosary Roman Catholic Church
11485 106 St.
Edmonton, AB T5G 2P8

Polish Hall
10960 104 St.
Edmonton, AB T5H 2W6

Baltyk Bakery
10557 Kingsway Ave.
Edmonton, AB T5H 4K1

Baltyk Meat Products & Deli Ltd.
10559 Kingsway Ave.
Edmonton, AB T5H 4K1

Polonia Sausage & Deli
10135 Princess Elizabeth Ave.
Edmonton, AB T5G 0X9

4.4 Informed Consent Determination

1.0 Describe who will provide informed consent for this study:

2.0 How is consent to be indicated and documented?

3.0 What assistance will be provided to participants, or those consenting on their behalf, who have special needs (e.g. non-English speakers, visually impaired, etc):
A Polish version of the consent form will be provided for participants, so that participants may choose to sign either the English or Polish version. The researcher will read the informed consent form to participants who are visually impaired. If these participants are unable to sign the consent form, they will be requested to give oral consent.

4.0 If at any time a participant wishes to withdraw or not participate in certain aspects of the research, describe the procedures and the last point at which it can be done:
The right to withdraw from the study, as well as the right to withhold answers to any questions will be included on the informed consent form. If the researcher notes discomfort in participants during interviews, she will remind the participants of these rights. Participants may withdraw from the interview at any point during the interview. Participants may withdraw from the study until December 28, 2010, after which point their data will be included in the final research report. To withdraw from the study after the interview, participants will contact the researcher by phone or email.

5.0 Describe the circumstances and limitations of data withdrawal from the study, including the last point at which it can be done:
The right to withdraw any and all collected data will be included on the informed consent form. Participants may withdraw their data from the study until December 28, 2010, after which point their data will be included in the final research report. To withdraw data from the study after the interview, participants will contact the researcher by phone or email. All data that is withdrawn will be destroyed after the request for withdrawal has been made.

6.0 Will this study involve an entire group where non-participants are present? No

7.0 Describe the incentives and/or reimbursements, if any, to participants and provide justification: Not applicable

4.5 Informed Consent Details

1.0 Provide justification for requesting a waiver of consent (if applicable): Not applicable

2.0 Oral consent: explain how oral consent will be documented (if applicable):
If a participant cannot sign the consent form, for example due to visual impairment, the researcher will read the informed consent form to the participant, and will request him or her to provide oral consent. The oral consent will be recorded on a digital audio recorder, and the researcher will make a note of this occurrence on the consent form for the particular participant.

3.0 Overt action: explain the overt action that will signify consent (if applicable): Not applicable

4.0 Inaction/non-objection: describe the procedures and justification for this type of consent (if applicable): Not applicable

4.6 Authorized Representative or Third Party Consent – if applicable

1.0 Explain why the participant is unable to give informed consent (eg, young age, mental, or physical condition, etc): Not applicable

2.0 Will the participant who is not competent to give full informed consent be asked to give assent? No

If YES, explain how assent will be sought. If applicable, attach a copy of assent form(s) in the Documentation section: Not applicable

3.0 In cases where participants gain capacity to consent during the study, how will they be asked to provide consent on their own behalf? Not applicable

4.7 Group Research Documentation – if applicable

1.0 How will you ensure that non-participants are excluded from data collection? Not applicable

2.0 How will you provide appropriate activities for non-participants? Not applicable

3.0 How will you address discomfort or disadvantage, if any, arising out of non-participation? Not applicable

4.8 Study Population Categories

1.0 This study is designed to TARGET or specifically include the following (does not apply to co-incidental or random inclusion). Select all that apply:

4.9 Aboriginal People – if applicable

1.0 If you will be obtaining consent from Elders, leaders, or other community representatives, provide details: Not applicable

2.0 If leaders of the group will be involved in the identification of potential participants, provide details: Not applicable

3.0 Provide details if:

Not applicable

4.0 Provide information regarding consent, agreements regarding access, ownership and sharing of research data with communities: Not applicable

5.0 Provide information how final results of the study will be shared with the participating community (eg. via band office, special presentation, deposit in community school, etc)? Not applicable

5.1 Research Methods and Procedures

1.0 This study will involve the following (select all that apply)
The list only includes categories that trigger additional page(s) for an online application (and biomedical options have been removed, for LIS 505).

4.0 Internet-based research

4.1 Will you be doing any internet-based research that involves interaction with participants? No

4.2 If YES, will these interactions occur in private spaces (e.g. members only chat rooms, social networking sites, email discussions, etc)? Not applicable

4.3 Will these interactions occur in public space(s) where you will post questions initiating and/or maintaining interaction with participants? Not applicable

5.5 Use of Deception or Partial Disclosure – if applicable

1.0 Describe the information that will be withheld from, or the misinformation that will be provided to, the participants: Not applicable

2.0 Provide a rationale for withholding information: Not applicable

3.0 Indicate how and when participants will be informed of the concealment and/or deception. Describe the plans for debriefing the participants. Indicate when the participants will be debriefed, and describe the nature and extent of debriefing:
Not applicable

4.0 Describe the procedure for giving the participants a second opportunity to consent to participate after debriefing. Explain if debriefing and re-consent are not viable:
Not applicable

5.0 Indicate how participants may follow-up with researchers to ask questions or obtain information about the study: Not applicable

5.6 Sound or Image (other than audio- or video-recorded interviews) or Material Created by Participants – if applicable

1.0 Explain if consent obtained at the beginning of the study will be sufficient, or if it will be necessary to obtain consent at different times, for different stages of the study, or for different types of data:
Not applicable

2.0 If you or your participant's audio- or video-records, photographs, or other materials artistically represent participants or others, what steps will you take to protect the dignity of those that may be represented or identified?
Not applicable

3.0 Who will have access to this data? For example, in cases where you will be sharing sounds, images, or materials for verification or feedback, what steps will you take to protect the dignity of those who may be represented or identified?
Not applicable

4.0 When publicly reporting data or disseminating results of your study (eg presentation, reports, articles, books, curriculum material, performances, etc) that include the sounds, images, or materials created by participants you have collected, what steps will you take to protect the dignity of those who may be represented or identified?
Not applicable

5.0 What opportunities are provided to participants to choose to be identified as the author/creator of the materials created in situations where it makes sense to do so?
Not applicable

6.0 If necessary, what arrangements will you make to return original materials to participants? Not applicable

5.7 Interviews, Focus Groups, Surveys and Questionnaires – if applicable

1.0 Are any of the questions potentially of a sensitive nature? No

If YES, provide details: Not applicable

2.0 If any data were released, could it reasonably place participants at risk of criminal or civil law suits? No

If YES, provide the justification for including such information in the study: Not applicable

3.0 Will you be using audio/video recording equipment and/or other capture of sound or images for the study? Yes

If YES, provide details: The interviews will be recorded on a digital audio recorder.

5.8 Internet-based Interaction with Human Participants – if applicable

1.0 Describe how permission to use the site(s) will be obtained, if applicable: Not applicable

2.0 If you are using a third party research tool, website survey software, transaction log tools, screen capturing software, or masked survey sites, how will you ensure the security of data gathered at that site?
Not applicable

3.0 If you do not plan to identify yourself and your position as a researcher to the participants, from the onset of the research study, explain why you are not doing so, at what point you will disclose that you are a researcher, provide details of debriefing procedures, if any, and if participants will be given a way to opt out, if applicable:
Not applicable

4.0 How will you protect the privacy and confidentiality of participants who may be identified by email addresses, IP addresses, and other identifying information that may be captured by the system during your interactions with these participants?
Not applicable

6.1 Data Collection

1.0 Will the study team know the participants' identity at any stage of the study? Yes

2.0 Primary/raw data collected will be (check all that apply):

3.0 If identifying information will be removed at some point, when and how will this be done?
The researcher will assign pseudonyms to participants during transcription of interviews, and they will be used at all following stages of the study, including the final report. The master list matching participant names to pseudonyms will be stored separately from the transcripts and audio recordings in a locked drawer.

4.0 If this study involves secondary use of data (i.e., data previously collected by another researcher for another study), list all sources:
Not applicable

5.0 In research where total anonymity and confidentiality is sought but cannot be guaranteed (eg. where participants talk in a group) how will confidentiality be achieved?
At the end of each interview, the researcher will ask participants whether there is any information that they would like to not be included in the study. She will remind them that they can contact her until December 28, 2010 to remove any data from the study. If participants do not indicate their wishes for not including, or removing, any data, the researcher will be able to include it in the study.

6.2 Data Identifiers

1.0 Personal Identifiers: will you be collecting any of the following (check all that apply):

If OTHER, please describe: Not applicable

3.0 If you are collecting any of the above, provide a comprehensive rationale to explain why it is necessary to collect this information:
The researcher may need to contact participants for follow-up clarification, so she requires their names in order to address them politely. Their address is requested to verify that they live in Edmonton. Additionally, interviews will be conducted in participants’ homes, so the researcher needs the address in order to locate these dwellings. The researcher will contact participants through email and phone conversations, therefore she requires this information.

4.0 Specify information that will be RETAINED once data collection is complete, and explain why retention is necessary. Include the retention of master lists that link participant identifiers with de-identified data:
All personal information will be retained once data collection is complete, so that the researcher may follow-up with participants. The master list linking pseudonyms with identities will be retained, so that the researcher is able to contact the correct participants.

6.3 Data Confidentiality and Privacy

1.0 How will confidentiality of the data be maintained? Explain the steps you propose to maintain data confidentiality and privacy. (For example, study documents must be kept in a locked filing cabinet and computer files encrypted, etc.)
The audio recorder used during interviews will be stored in a locked drawer. The audio recordings will be transcribed solely by the researcher, and she will be the only individual who has access to partial and finished transcripts. The audio recordings will be deleted from the audio recorder after two copies (main and backup) have been made as computer files. The main copies will be stored in encrypted computer files on a password-protected computer. The backup recording computer files will be stored on CD-Rs, which will be stored in a locked drawer. The printed transcripts will be stored in a locked drawer that is separate from the drawer with the audio CD-Rs of the interviews. Computer files of the transcripts will be encrypted and stored on a password-protected computer. Pseudonyms will be used for all participants. Transcripts will use pseudonyms, as will the final report. The master list which matches pseudonyms with actual names will be stored in a locked drawer, separately from the printed transcripts and CD-R recordings. The researcher will be the sole individual who will possess the password for the sole computer used in this study. The researcher will be the sole individual who will decrypt all files. The researcher will be the sole individual who possesses the keys to all locked drawers.

3.0 If you involve colleagues, assistants, transcribers, interpreters and/or other personnel to carry out specific research tasks in your study, how will you ensure that they properly understand and adhere to the University of Alberta standards of data privacy and confidentiality?
Not applicable, as researcher will carry out all tasks in the study.

4.0 Data Access

4.1 Will the researcher make raw data that identify individuals available to persons or agencies outside of the research team? No

4.2 If YES, describe in detail what identifiable information will be released, to whom, why they need access, and what safeguards will be used to protect the identity of subjects and the privacy of their data.
Not applicable

4.3 Provide details if identifiable data will be leaving the institution, province, or country (eg. member of research team is located in another institution or country, etc.)
Not applicable

6.4 Data Storage, Retention, and Disposal

1.0 Where will the research data be stored? Specify the physical location and how it will be secured to protect confidentiality.
The research data will be stored in the researcher's home office. The office will be locked, and the researcher is the only individual who possesses keys to it. The researcher will be the sole individual entering the office. No data will leave the office until they are destroyed. All data will be stored in separate locked drawers, and encrypted files will be stored on a password-protected computer, as previously mentioned.

2.0 Describe what will happen to the data once the study is completed. Indicate your plans for the destruction of the identifiers at the earliest opportunity consistent with the conduct of the research and/or clinical needs:
The data will be kept for five years. Transcripts and the master list of pseudonyms and real names will be shredded by the researcher, so that there will be no opportunity for any other individuals to access the data. The shredded data will be recycled. Computer files of transcripts will be deleted. Audio recordings will be deleted from the hard drive of the computer and CD-Rs.

3.0 You must keep your data for a minimum of 5 years according to GFC Policy 92.2. How will you provide for data security during this time?
The data will be stored in the same manner as outlined previously for five years until it will be destroyed.

7.1 Documentation

Attach the following documents (as appropriate for your study) to this application, along with any other relevant documents pertaining to your project.

1.0 Recruitment Materials
2.0 Letter of Initial Contact
3.0 Information Letter
4.0 Consent Forms
5.0 Assent Forms
6.0 Questionnaires, Cover Letters, Surveys, Tests, Interview Scripts, etc.
10.0 Confidentiality Agreement (e.g., for hired transcriptionists)