Section 2.1 - Individual Experiences Monitoring in Practice

Objectives

By the end of this module, participants will:

Understand the responsibilities of Monitors and other people involved in monitoring individual experiences.
Know how to conduct a monitoring interview, including obtaining the informed consent of the Interviewee.
Understand the qualities and skills of a good Monitor.
Know how to make sure monitoring information is kept confidential.

1. Before the Interview

I. People involved in Monitoring:

Information about the life experiences of persons with disabilities is collected through interviews by Monitors. Monitors are also persons with disabilities. Two Monitors conduct each interview together.

The persons with disabilities who are interviewed are called Interviewees. One Site Coordinator works in each area where interviews take place. Site Coordinators work closely with the Monitors and the Project Coordinator to make sure that the interviews run smoothly including:

assisting Monitors to schedule interviews,
arranging disability-related adaptations,
collecting information from the Monitors after the interviews and
helping Monitors to solve any problems that may arise.

Site Coordinator duties are looked at in more detail later in this module.

Every country where monitoring takes place has a Project Coordinator. The Project Coordinator has overall responsibility for all of the monitoring activities. He or she:

hires the Monitors and Site Coordinators,
oversees their training,
works closely with the Site Coordinators to make sure that monitoring moves forward in all the places where interviews take place,
helps the Site Coordinators to solve any problems that arise,
coordinates the analysis of the interviews,
participates in writing the monitoring report and raises awareness about the monitoring project and data collected.

II. Getting ready for the Monitoring Interview

Here are a number of steps Monitors take to prepare for the interview:

(a) Know about the monitoring site

The Project Coordinator, Site Coordinators and Monitors together will prepare a brief report containing background information about each monitoring site including:

size of the area
total population
description of organizations of persons with disabilities
major cities – names, population
major religions
languages spoken
major ethnic groups
standard of living, poverty and unemployment
major causes of impairments in the area (for example, polio, war, and mines, toxic chemicals, etc.)
percentage of the total population of persons with disabilities in the area who:
- have specific impairments or types of disability (mobility, blind/low vision, deaf/hard of hearing, intellectual, psycho-social, others)
- are men or women
- fall within these age groups (18-25), (26-40), 41-55), (56-70) and (over age 70)
type of terrain (for example, mountains, plains, etc.) (affecting transportation)
cultural practices that will affect interviews

This background information will give Monitors and Site Coordinators an overview of the areas where they are working, and will help Site Coordinators and the Project Coordinator decide who will be interviewed. It will also be used in the final monitoring report.

(b) Choose an appropriate location for the interview

The location should be:

Accessible - The location should be easy to reach by transport and be fully accessible to both the Interviewee and the monitoring team.
Safe - The location should be secure from outside distractions. Interviews should not take place in a location where a lot of people will be able to see the Interviewee participating. This is one way of ensuring that the interview is confidential and the person being interviewed feels comfortable. The interview location should not raise suspicion among people who see the participants in the middle of a discussion.
Calm - The location should have limited noise and distractions so that the interview will not be interrupted.
Private - The interview should take place in private without family members or other people present. The Interviewee might not want to talk about traumatic experiences with other people present (for example, a family member, caretaker or other person). In some cases, it could be that family member, caretaker or other person who is responsible for a human rights violation (for example: abuse, withholding food or restricting movement). If the interview takes place in the Interviewee’s home, make sure that there is privacy. No one should be able to overhear the conversation.

Some possible locations to consider include:

quiet place in a public park
place of worship
private office
quiet place in a community centre
quiet tea or coffee shop

(c) Address Language Issues

It is best for the interview to be conducted in the language the Interviewee wants to use. This will make the Interviewee more comfortable and will allow Monitors to collect more detailed information. Wherever possible, the Interview Guide found in Appendix A will be translated into all of the languages in which interviews might take place. In all cases, the Information Sheet found in Appendix C and the Free and Informed Consent Form found in Appendix D will be translated and available in the language of the Interviewee.

Monitors should only conduct interviews when they speak the same language as the person being interviewed. This is one of the reasons why it is important to have Monitors come from the communities in which the interviews are taking place.

In the case where a Monitor or Interviewee is deaf, the interviews can go ahead using sign language interpretation or real time captioning.

Where an Interviewee has a communication disability, it may be possible to conduct an interview with the assistance of a communication facilitator and/or communication aid, depending on the particular situation of the Interviewee.

(d) Be sure that any disability-related adaptations required by Monitors or the Interviewee are in place

Adaptations for Monitors: Monitors should consider whether they require any adaptations to participate fully in the interview and arrange for these in advance (for example, scheduling a support worker to assist, having the interview questions in the correct format such as Braille, using a sign language interpreter, etc.)

Adaptations for Interviewees: When scheduling the interview, Interviewees will be asked if there are any adaptations they require in order to participate fully (e.g., use of a sign language interpreter, materials in Braille, etc.). The Monitors and Site Coordinator will work together to arrange these adaptations.

(e) Recognize differences that may affect the interview including cultural norms, gender, age and status

Differences between the Monitors and the Interviewee can make doing the interview more difficult. These differences may be related to things that come up in the interview. They may include attitudes about gender, age differences, and roles that people hold in their communities (for example, elder, chief, healer, professor) or appropriate topics of conversation. Even culturally specific ideas about the meaning or appropriateness of physical interaction (eye contact, personal space) can lead to misunderstandings. Find out about any differences before the interview and be sensitive to them during the interview.

(f) Wear the appropriate clothing for the interview

Wear clothes that will allow everyone to feel comfortable and confident, including the Interviewee. In some cultures, it may be important to dress more formally for some Interviewees than for others. Consider cultural rules on this matter. In other cases, dressing too formally may make people feel uncomfortable. So the good judgment of the Monitor is important.

(g) Know and feel comfortable with the Interview Guide

It is important for Monitors to know the Interview Guide very well so that they are comfortable moving between topics and questions. It is absolutely necessary for Monitors to review the Interview Guide at least once before every interview. (See Appendix A).

(h) Gather all of the equipment and forms needed for the interview

See the Checklist of Equipment and Forms in Appendix G for a full list of what each pair of monitors will need for their interviews.

(i) Make sure the audio recorder is working properly

Practice using the audio recorder before the interview. This will help Monitors to appear professional and avoid confusion during the interview. For example, practice changing the cassette tape, moving between digital file folders or turning the recorder on and off. Bring extra cassette tapes (where necessary) and extra batteries to be sure that there are enough for the entire interview.

III. Qualities and Skills of a Good Monitor

Here are some of the qualities and skills of a good Monitor:

Communication
- Good Questioner
- Good Listener
Personal Interaction
Precision
Sensitivity / Empathy
Flexibility
Objectivity
Commitment
Honesty
Social and Political Awareness
Confidence
Essential Knowledge / Information

Communication

(a) Being a Good Questioner when interviewing means:

Asking questions in a way that is respectful and easy for the Interviewee to understand. Using familiar everyday language that will be understood.
Avoiding asking questions too fast or questions that are confusing.
Avoiding asking questions in a way that will suggest the answer to the Interviewee. For example, instead of asking, Were you discriminated against? ask the Interviewee, How were you treated by the school officials?.
Allowing time for the Interviewee to think about their answer to the question. A moment of silence is fine. Since the Interviewee has not heard the questions before, Monitors should give Interviewees time to think about their answers. Also, some people take time to open up.
Balancing the need to let the Interviewee tell their story with the need to gather particular details for analysis purposes. The free-flow of conversation is more important than sticking to the order of questions in the Interview Guide.
Not pushing the Interviewee beyond what he or she wishes to discuss. Remember that it is not about getting the interview at any cost. If someone does not want to answer a particular question, move on to another question unless the Interviewee states that they want to terminate the interview altogether.

Important Tip: Conducting interviews in pairs will make this easier to be sure that the Monitors collect all the information they need. While one Monitor asks the questions, the second Monitor can take notes and identify any issues to follow-up.

(b) Being a Good Listener when interviewing means:

Being able to listen carefully to what the Interviewee is saying.
Avoid repeating questions the Interviewee has already answered. Pay close attention to the Interviewee so that he or she is not put in the position of having to say, As I’ve told you before.... If, during the course of the interview, Monitors realize that there is information that they did not completely understand or that they would like the Interviewee to repeat, tactfully ask them a question like, Am I correct that you said [repeat back what you remember hearing here]? This prompts the Interviewee to clarify their comments.
Being patient with repetitive statements that you may not think are in a logical order. Let the Interviewee tell his or her story in his or her own way. Otherwise, he or she may be reluctant to talk about sensitive issues – people need time to tell their stories and they need to tell them in the way they think about them. But, if the Monitors find they cannot follow the details of the story, it is appropriate to ask the Interviewee to narrate the story in a chronological order. This may help the Interviewee to structure the story and include important details.

Important Tip: Avoid finishing the sentences of Interviewees even if this is the usual way of talking in your culture or language. By finishing the Interviewee’s sentence, Monitors will be getting their own experiences and not the Interviewee’s experience.

Personal Interaction

Personal Interaction when interviewing means:

Knowing how to relate to Interviewees including showing respect for their knowledge, experiences and feelings, showing an interest in the Interviewee as an individual who is worthy of respect and concern and being respectful in the way Monitors dress for the interview.
Being aware and receptive to nonverbal communication. Be aware that posture and how one sits in relation to the Interviewee can affect how comfortable the Interviewee feels. For example, in a confined space, leaning forward may appear threatening but, under other circumstances, not doing so may be seen as a lack of interest. Some Interviewees may prefer to sit closer to the Monitors; others may be very protective of their personal space or shy away from being touched. Observe the body language of the Interviewee to gain a sense of what is most appropriate in the situation.

Important Tip: Monitors should be very careful about communicating through body language, facial expressions or other means, that they do not believe or disagree with what is being said, even if that is the case.

Precision

Precision and Probing when interviewing means:

Being observant and accurately recording the information received. Asking the right questions and probing to getting the information needed by probing or inquiring further whenever necessary.
Probing means making sure that you find out all the information you need. Tips on how to probe for more information are found later in this module.
Guiding the interview and redirecting whenever necessary to keep the Interviewee focused on the information they are giving. Avoiding falling into situations where the Interviewee begins to attempt to ‘interview’ the Monitors. Where necessary, bring the Interviewee back to the purpose of the interview.
Clarifying generalization: Interviewees might begin to talk about ‘persons with disabilities in general’, rather than their own personal experiences. If this happens, there are several strategies Monitors can use to bring the Interviewee back on topic:
Ask the Interviewee if he or she is part of the group they are generalizing about. This moves the conversation from the ‘we’ (or ‘they’) to the ‘I’.
Ask increasingly specific questions. This will often get the Interviewee to tell his or her own story and to give more details about the story they are telling.

Sensitivity / Empathy

Sensitivity/Empathy when interviewing means:

Paying attention to how the Interviewee experiences the interview and responding in a caring way. Their story is important to them and they may find it difficult to tell.
Being sensitive of subjects that are cultural taboos. For example, in certain places and cultures, it is forbidden to speak about sexual abuse. Talking about these types of abuses can be even more difficult for the Interviewee than talking about other issues.
Developing and maintaining a feeling of acceptance and trust with the Interviewee.

Flexibility

Flexibility when interviewing means being able to improvise in the interview and take initiative when necessary to make it easy and comfortable for the Interviewee to tell their story.

Objectivity

Objectivity when interviewing means observing things as they are and not judging the interviewee according to personal views or expectations. Not expressing personal opinions when interviewing.

Commitment

Commitment when interviewing means being dedicated to protecting and promoting human rights and to performing the tasks of a Monitor.

Social and Political Awareness

Social and Political Awareness in interviewing means being aware of things like local traditions and customs as well as being aware of political structures and possible tensions.

Confidence

Confidence in an interview means being able to assert oneself in their role as Monitor where necessary, for example, by redirecting the Interviewee to the question asked.

2. Using the DRPI Interview Guide

I. Background to the Interview Guide

The Interview Guide used by Monitors is included as Appendix A.

The Interview Guide includes mainly open-ended and semi-structured questions. It has been designed to help Monitors find out information about the human rights experiences of the Interviewee. Information can be collected about all types of rights (civil, cultural, economic, political and social) and in relation to the general human rights principles (dignity; autonomy; participation, inclusion & accessibility; non-discrimination & equality; respect for difference). The Interview Guide is designed to give persons with disabilities an opportunity to tell their own story and to identify the rights issues that are most important to them.

II. Steps of the Monitoring Interview

This section reviews the steps of the monitoring interview following the order of the Interview Guide (Appendix A).

A. Beginning the Interview

Introductions

Monitors begin the interview by greeting the Interviewee, thanking them for agreeing to be interviewed and introducing everyone who is with them (for example, Monitors, support worker, interpreter and anyone else attending the interview).

As few people as possible should be with the Interviewee and Monitors during the interview. For example, support workers who are not directly assisting with the interview should wait in a location near enough to respond to a signal for assistance but far enough away to not overhear the interview.

Important Tip: Remember that the Interviewee’s friends and family members should not be present for the interview. In cases where members of the Interviewee’s family ask Monitors why they are doing the interview, Monitors can give them a copy of the Information Sheet (Appendix C) which provides background information about the project. If family members or friends have more questions, Monitors can ask them to contact the Site Coordinator or Project Coordinator whose names and contact information is on the Information Sheet.

Monitors should remember to:

Greet the Interviewee in a friendly way. (Smile, shake hands, etc., according to local customs). The first few minutes of the interview are very important because they set the tone and hopefully put the Interviewee at ease.
Introduce themselves providing their names and give a little of their own background. For example, Monitors might want to tell the Interviewee about the town they come from, the disability organization they work with, etc.
Monitors also introduce any interpreters, support workers or other people who are with them, clearly explaining each person’s role.
Introduce all of the equipment the Monitors have brought with them (for example, audio recorder, notebook, etc.).
Ask the Interviewee if he or she is comfortable.

Request written, free and informed consent

Next, the Monitors ask the Interviewee whether he or she agrees or ‘consents’ to participate in the monitoring interview. This is a very important step in the interview process. Many times, persons with disabilities have had research ‘done on them’, without their consent. Human rights monitoring involves working with persons with disabilities, not on persons with disabilities.

Note that in DRPI projects, we are not interviewing children (that is people under the age of 18). We are also not interviewing people who cannot give their own consent or who cannot agree themselves that they want to be interviewed.

If an Interviewee refuses to grant his or her consent to be interviewed in writing, the interview cannot proceed.

An Interviewee’s decision to participate in the monitoring interview must be ‘free’, ‘informed’ and ‘in writing’.

Free Consent

To be a ‘free’ consent, the Interviewee must not feel forced to participate in the interview. He or she must be free to choose whether or not to take part and feel confident that they will not experience any negative consequences if they decide not to participate.

Also, Interviewees must be informed that even if they decide to participate, they will be able to stop participating at any time during the interview.

Monitors must make sure that they do not influence Interviewees with their authority or their own feelings of how important the interviews are. Respect the needs and views of the Interviewee. If someone does not wish to participate, that is fine; there will be other people who will want to be interviewed.

Informed Consent

To be an ‘informed’ consent, the Interviewee must understand all aspects of the monitoring project including:

what will happen during the interview;
how the information provided by the Interviewee will be kept confidential;
how the information will be used;
possible consequences of participation – Interviewees must be informed of any potential risks involved in providing information but, at the same time, these risks should not be overemphasized.
if there are any situations where the Monitors are required by law to report things said during the interview (only if the Project Coordinator tells the Monitors that this is something that applies in their country).

Important Tip: All of the issues dealing with ‘free’ and ‘informed’ consent are covered in detail in the Information Sheet found in Appendix C.

Every person who might be interviewed should be given a copy of the Information Sheet in his or her language and in a format that is accessible to them (for example,12pt font, large print, Braille, etc.). If a potential Interviewee cannot read the Information Sheet, Monitors must read the document aloud to them. In all cases, the Monitors will review the Information Sheet with the potential Interviewee, making sure that everything is understood and answering any questions. A copy of the Information Sheet will be left with the Interviewee.

Written Consent

Finally, the Interviewee must provide written proof that his or her consent to participate is free and informed by signing or officially marking the Free and Informed Consent Form found in Appendix D. Verbal consent is not enough. If an Interviewee refuses to provide written consent to be interviewed, the interview cannot proceed.

Monitors take 2 copies of the Free and Informed Consent Form with them to each interview. Both copies will be signed. One copy is kept by the Interviewee and one is kept by the Monitors and given to the Site Coordinator following the interview.

Request Written Permission to Audio Record the Interview

In order to make sure that there is a complete and accurate record of the information provided by the Interviewee, the Monitors will make an audio recording of the interview.

Monitors must ask the Interviewee for permission to tape or digitally record the interview. When asking for permission, the Monitors should emphasize that all written and audio records of the interview will be kept confidential.

In cases where a hearing person is interviewing a person who uses sign language, the audio recorder will record both the hearing person’s voice and the voice of the sign language interpreter. In cases where both the Monitors and Interviewee use sign language, two interpreters will be used, and each of their voices will be audio recorded. If real-time captioning is used, the digital transcript of the interview can supplement the audio recording.

If the Interviewee consents to have the interview taped or digitally recorded, he or she must sign and date the Free and Informed Consent Form (in Appendix D)on the line indicated.

Recall that Monitors take 2 copies of the Free and Informed Consent Form with them to each interview. Both copies will be signed. The Interviewee keeps one and one is kept by the Monitors and given to the Site Coordinator following the interview.

The Monitors can begin audio recording the interview once the Interviewee has given this signed consent.

Write the Interviewee’s Name on the Identification Sheet: The Interviewee’s name is not recorded in the audio recording of the interview or in the Interview Notes. This protects the privacy of the Interviewee. The audio recorder is stopped when this information is received. The Interviewee’s name is only written on a separate document called the Identification Sheet where it is assigned an ‘Interview Code’.

The Interview Code is composed as follows:

2 letters for the region where the interview is taking place. For example:
- Africa - AF
- Asia-Pacific – AP
- Europe – EU
- Latin America - LA
- North America – NA
2 letters for the country. For example:
- Rwanda – RW
- South Africa – SA
- Uganda – UG
- Argentina – AR
- Chile – CH
2 letters for the monitoring site. For example:
- Kigali – KG
- East Region – ER
- West Region – WR
1 letter for the pair of Monitors conducting the interview. For example:
- when Jean and Maria are Monitors working in a pair - A
- when Sujit and Nur are Monitors working in a pair - B
- when Jean and Esteban are Monitors working in a pair - C
2 digit number for the particular interview conducted by the monitoring pair, in sequence. For example:
- first interview done by Jean and Maria – 01
- eleventh interview done by Jean and Maria - 11

Using the above examples, the code for the fourth interview conducted by the Monitors Jean and Maria working in the East Region of Rwanda, Africa would be: AF-RW-ER-A-04.

Important Tip: The Interview Code is recorded on each page of the Interview Notes. If a cassette tape is used to audio record the interview, Monitors write the Interview Code on the tape. If the interview is recorded using a digital recorder, the Interview Code is used in the digital file name. The Interviewee’s name is not recorded on either the cassette tape or the digital file name for the interview. At both the beginning and end of the audio recording, one of the Monitors should state the Interview Code for that interview, by stating: This is the beginning/end of interview AF-RW-ER-A-04.

A sample Identification Sheet is included as Appendix E.

Only the Monitors, Site Coordinator and Project Coordinator will ever see the Identification Sheet and know the names of the people who have been interviewed.

The Identification Sheet must always be kept separate from the Interview Notes and any tape or digital recordings of the interview. It will remain with the Project Coordinator and will not be used or even looked at when the interview is being analyzed.

B. Experiences faced by the Interviewee

In order to put the Interviewee at ease and to encourage him or her to speak about the rights issues that he or she feels are most important to them, Monitors begin by asking broad questions about the Interviewee’s life and his or her daily experiences (called ‘open-ended’ questions).

Here are the three open-ended questions in the Interview Guide:

Please tell me a little about your life during the past five years. What things do you do? Where do you go? Who do you meet?
What are the things in your life that are most satisfying?
What are the most difficult barriers or challenges that you face in your life?

Identifying the 1st Experience

Having found out something about the person being interviewed and their lives, it is now the time to explore some particular events in the individual Interviewee’s life in some detail.

To do that, the Monitors ask the Interviewee to speak about a particular time when their rights have been violated.

The question in the Interview Guide does not use the words ‘human rights’ since some Interviewees might not know what ‘human rights’ are. Instead, other words have been used to describe human rights.

In order to make sure that the information collected is current, it is important that the issues or experiences raised happened within the last 5 years. Monitoring is about the present situation of people so we want to get stories that have happened recently.

Here is the question in the Interview Guide:

1.1 Do you recall a particular time or event in the last five years when you were left out or treated badly or prevented from participating because of your disability?

Background Information about the 1st Experience

After identifying the experience or issue, Monitors ask questions to find out more details. The goal is to get as much information as possible about the experience that the Interviewee has raised and wants to talk about.

Like a journalist investigating a story, Monitors want to find out Who? What? Where? When? and How? The questions asked are:

1.2 What happened? Where and how did it happen?

1.3 Is this still happening or did it just happen once?

1.4 Are there other details that you want to share with us about what happened, when and how in this experience?

When asking these questions, it is very important to probe, dig or explore for as much information as possible about the experience. See Section 2.1(3)(a) below for further information about probing.

Relating the 1st Experience to the Human Rights Principles

Next, the Monitors ask questions that attempt to link the experience raised by the Interviewee to the general human rights principles identified in Module 1 (dignity; autonomy; participation, inclusion & accessibility; non-discrimination & equality; respect for difference). Remember that these are general principles set out in the Convention on the Rights of Persons with Disabilities and other United Nations human rights instruments.

Here are examples of some of the questions about human rights principles asked in the Interview Guide:

[ Dignity ]

1.5 How did this experience make you feel and why? (For example, did you feel respected/not respected, ignored/cared for, worthy/ unworthy?)

1.6 What made you feel that way?

1.7 What do you think made people treat you that way?

[ Autonomy ]

1.8 Did you feel that you had a choice about what happened to you? Why or why not?

1.9 If you had a choice, would it have made a difference to what happened? In what way?

For experiences where there are clear issues related to choice and making a decision for yourself (autonomy) ask:

(a) Did you want to make a different decision or did you want to do something else? What was the different decision or what did you want to do?

(b) Did you have enough information to make that decision?
If not, what prevented you from having enough information?

(c) Did you feel pressured to act the way you did? Who/what was pressuring you? How did it make you feel?

Refer to the complete version of the Interview Guide, found in Appendix A for a full list of the questions related to the general human rights principles. (See questions: 1.5 to 1.15; 2.5 to 2.15 and 3.5 to 3.15)

The questions in the Interview Guide have been developed to draw out information related to the human rights principles without naming the principle being discussed. When asking the questions, the Monitors should not name the principle. For example, Monitors will not say: The following questions deal with the general principle of ‘Dignity.’ Instead, Monitors will simply move directly to the questions under each principle, for example: How did this experience make you feel and why? We have put in the principles as guideposts for the Monitors.

Note that when asking these questions, it is very important to probe for as much information as possible. See Section 2.1(3)(a) below for further information about probing.

Reporting History

Now the Monitors want to know something about whether the Interviewee told anyone what happened to him or her. So the Monitors find out whether or not the Interviewee reported the experience to anyone. If the experience was not reported, the Monitors ask why not? If it was reported, the Monitors ask what, if any, action was taken by the person or organization it was reported to?

The ‘reporting history’ questions are asked to see whether persons with disabilities have a way to get help in situations when their human rights are violated. Did they feel they had anyone who could assist them? The questions are not asked in order to make a judgment about the Interviewee’s decision to report, or not to report, a particular experience. It is understood that there are many reasons why an Interviewee may choose not to report an issue.

For example, sometimes there is no authority responsible for the issue; other times, the Interviewee may not have known about people who could help them; or, perhaps the Interviewee did not feel safe reporting the experience because he or she feared that something bad would happen to him or her.

If the Interviewee seems uncomfortable with the reporting history questions, the Monitors should use their own words to explain to the Interviewee why these questions are being asked.

Here are the reporting history questions in the Interview Guide:

1.16 Did you report the experience to anyone? Yes or no?

If you reported the experience, what kind of person/ organization did you report it to?

government official / social worker

police officer

religious leader

human rights commission

disability organization (DPO)

other (specify)

How did that person react? What action was taken?

If you did not report the experience to anyone why did you not report it?

Possible Solutions, Ways to Avoid Future Violations

Monitors also ask Interviewees for their opinion about the actions they think should be taken to improve the situation they experienced and/or to prevent that type of rights violation from taking place again, in the future.

These questions are asked because:

the Interviewee is often in the best position to identify the solution to the problem; and
this type of information might be useful to local disability organizations and policy makers when they are trying to avoid future violations of human rights

When asking for this information, Monitors must be sure that that they do not make the Interviewee believe that suggested solutions will be acted upon by those doing the study. The information collected will be used by disability organizations to call for changes, but there is no guarantee that people in power will listen or that changes will happen quickly.

Here is the possible solutions question in the Interview Guide:

1.17 In your opinion, what action[s] should be taken to improve [or prevent] the experience in the future?

Final Comments About the Experience

Finally, the Monitors ask the Interviewee if he or she has any further information to add about the issue.

Here is the question in the Interview Guide:

1.18 Is there anything else that you would like to tell us about that experience?

Identifying & Getting Information about the 2nd Experience

Next, where time permits, the Monitors ask about a 2nd experience. The Interviewee is asked:

2.1 Do you recall another particular time or event in the last five years when you were left out or treated badly or prevented from participating because of your disability?

Note that it is important not to rush the telling of the first experience that the Interviewee wants to talk about just to get to a 2nd or 3rd experience. But, it is helpful if the Monitors have time to collect information on more than one experience.

The Monitors then cover the questions from (b) to (f) above, about that 2nd experience. For a full list of the questions related to the 2nd Experience, see questions 2.1 to 2.18 in the Interview Guide found in Appendix A.

Identifying & Getting Information about the 3rd Experience

Next, if the Monitors still have time, they will ask about a 3rd experience. Questions (b) to (f) above are asked about that experience.

For a full list of the questions related to the 3rd Experience, see questions 3.1 to 3.18 in the Interview Guide found in Appendix A.

Important Tip: We have included the same questions three (3) times in the interview guide so that the Monitor does not have to flip back and forth as they move from the 1st experience to the 2nd experience to the 3rd experience.

C. Follow-up & Verification Information

After gathering the details regarding one or more experiences, Monitors ask the Interviewee if there are one or more people who could be contacted to provide further details regarding the issues that have been raised – that is, whether there are any other people who know about the experience(s) the Interviewee has told the Monitor about.

Monitors write the names of these people on the Identification Sheet and ask the Interviewee whether he or she consents to having someone on the monitoring team contact these people. Contacting these people without the Interviewee’s consent would violate the Interviewee’s privacy. Many times there will be no one who knows of the experience that the Interviewee has faced so there will be no need to record any information here.

If the Interviewee wants to give you the name of a person who saw what happened, it is helpful to find out the name and contact numbers of that person. If consent to contact one or more people is given by the Interviewee, the Monitors should write their contact details - for example, telephone number; email address; regular mail address, etc. on the Identification Sheet which is always kept confidential.

Here are the questions in the Interview Guide:

Is there anyone you would like us to could contact who saw what happened to you or who you would want to provide us with more information about the experiences you have raised?

For 1st Experience:

What is their name? [write name on Identification Sheet]

Can we contact this person? Yes or no?

If yes, what is the best way for us to contact him or her? [Monitor: write details on Identification Sheet]

For 2nd Experience:

What is their name? [write name on Identification Sheet]

Can we contact this person? Yes or no?

If yes, what is the best way for us to contact him or her? [Monitor: write details on Identification Sheet]

D. Collecting Background Information about the Interviewee

Next, the Monitors collect background information about the Interviewee. Here, it is very important for the Monitors to ask all of the questions in the Interview Guide one by one. This information is important to get a more complete picture of the living conditions of the persons with disabilities interviewed. For example, if Monitors do not record this information it will be impossible to understand whether certain types of discrimination are related to individual characteristics such as age, sex, type of impairment, etc.

Here are examples of some of the questions asked in this part of the Interview Guide:

Now, if you don’t mind, we would like to ask you a few questions about yourself.

4.1 What is your sex?

4.2 In what year were you born?

4.3 How would you describe your disability? [choose as many as apply]

mobility

sensory

blind

low vision

deaf

hard of hearing

intellectualpsychiatric

other (ask Interviewee to describe)

4.4 How long have you had your disability?

since birth

since (ask Interviewee to state the year)

For a full list of the questions about the Interviewee’s Background, see questions 4.1 to 4.14 in the Interview Guide found in Appendix A.

E. Ending the Interview & Finding Other People to Interview

After collecting the Interviewee’s background information, the Monitors ask, Do you have anything else that you would like to add? Be sure to give the Interviewee time to think and respond.

Next, the Monitors ask, Do you have any final questions for us? The Monitors answer any questions that are raised.

Finding Other People to Interview

Monitors always ask the Interviewee if they know any other person with a disability in their community who might be interested in participating in an interview. This is important because the Site Coordinator and the Project Coordinator will use these names when they decide who will be interviewed. They may not use all the names collected but they will use some so the more names they have, the better.

Here are the questions in the Interview Guide:

Do you know someone with a disability who lives in your community who we could interview for this study?
What is his or her name?
What type of disability does he or she have?
Is he or she a man or a woman?
How old is he or she?
How can we contact him or her?

This information is written on the Identification Sheet.

There is no guarantee that the person who is referred to the Monitors by the Interviewee will be interviewed. Monitors will pass the suggestions on to the Site Coordinator who will consider whether, given what is known about the potential Interviewee (sex, type of disability), he or she is the type of person that is underrepresented in the group that has been interviewed so far. More information about how this decision is made is found in section 2.2 (2)(a), below.

Concluding the Interview

Finally, the Monitors briefly review the following with the Interviewee:

what will happen with the information the Interviewee has provided
how the information will be kept confidential
the purpose of the project
important timeframes (for example, when the report from the interviews will be ready)

Monitors make sure the Interviewee knows that the information he or she has provided will make a valuable contribution to improving the lives of persons with disabilities in their region, their country, and internationally, Monitors should be careful not to raise unreasonable expectations on the part of the Interviewee. They should make sure to let the interviewee know that there will not be any particular follow up to the specific situations they have brought up in the interviews but the very fact that this work is going on is an indication of the progress that is being made. Do not promise rewards or results.

Remember to leave the Information Sheet with the Interviewee so that they have the contact details for the Site Coordinator, Project Coordinator and the disability organization running the project. Monitors can add their personal contact details to the Information Sheet if they wish.

Monitors should be sure to thank the Interviewee for his or her time.

Important Tip: After the interview, Monitors should not begin a personal conversation with the Interviewee. There may be many things that Monitors would like to continue to discuss but it is better to leave those for another day. There may be confusion about what is to be kept confidential if a conversation continues.

F. Completing Interview Notes & Transferring Data

There are a number of important things that have to be done by the Monitors after the interview. They need to be completed as soon as possible.

Following the interview, Monitors have to:

Secure the audio recording and mark it with the correct Interview Code (see Identification Sheet).
Listen to the audio recording of the interview. If part of the audio recording is not clear, Monitors should explain what is missing (if they remember) in the Interview Notes (see Appendix F). This should be done as soon as possible after the interview. The fresher the interview is in the Monitors’ minds, the easier it will be to fill in the blanks or make comments.
Complete the Interview Notes including the following observations:
- overall impression of the interview (for example, Interviewee seemed nervous or anxious over certain questions, the atmosphere was comfortable, etc.).
- details about the location of the interview (for example, whether it was held indoors or outdoors, type of building where it was held, type of room, who else was around, and any other information that the Monitors think is important).
- information about who was present at the interview (number of Monitors, and interpreters (if there were any).
- details about any challenges faced or interruptions that occurred during the interview (for example, airplane flew overhead making it difficult to hear, lost electrical power so could not see, etc.) at what stage in the interview theyoccurred and what steps were taken to address them
- things that made the interview go smoothly and what made it more difficult
- any concerns about the truthfulness and/or accuracy of anything the Interviewee said - explain why the Monitors have these concerns (for example, answers were very inconsistent, answers seemed rehearsed, etc.)
Be certain that one of the Monitors has signed and dated the Free and Informed Consent Form.
Provide the Site Coordinator with the following documents:
- audio recording of the interview – labeled with the Interview Code
- completed Interview Notes
- completed Identification Sheet
- 1 copy of the signed Free and Informed Consent Form

In order to protect the confidentiality of the information, no copies should be made of any of the written or audio interview records.

The Site Coordinators and Project Coordinator will make sure that the written and audio records are stored in locked cabinets in secure locations. Where records are stored in electronic format (for example, digital audio recordings), the computer systems and access to files will also be secured.

3. Interviewing Skills & Issues

(a) Probing for More Information

Probing involves asking follow-up questions when:

a response is not fully understood,
answers are vague, ambiguous, confusing or unclear
more specific or in-depth information is needed.

When using monitoring tools like the Interview Guide, probes or ways of digging for more information cannot be planned in advance. It is not possible to know what issues the Interviewee might raise and how Monitors might need to probe or question further to learn more. But, it is helpful to be aware of the possible need to probe and some general ways to do so.

Here are some examples of probing questions:

Could you please tell me more about…?
I just want to make sure I really understood you. What was it exactly that …?
I’m not certain what you mean by… Could you give me some examples?
You mentioned… What stands out in your mind about that?
This is what I thought I heard…Did I understand you correctly?
How does it make you feel? What makes you feel that way?
You just told me about… I’d also like to know about…
Can I take you back to something you said earlier?..
When you said…, what gave you that impression?
What makes you say that?

Questions beginning with ‘what’ or ‘how’ are good probing questions because they ask for more detail.

Important Tip: Avoid questions that begin with ‘why’. They may make the Interviewee feel defensive. Instead of ‘why’, start the question with ‘what’.

The questions in the Interview Guide have been designed to avoid ‘yes’ and ‘no’ responses, but it will also be important to probe for depth and ask more questions to get more details. Probing is especially important at the beginning of the interview since this lets the Interviewee know that you want to know the whole story and not just a summary. It sets the tone. If an Interviewee realizes that every brief response to an open-ended question is going to be followed by a set of extra direct questions, he or she may begin to give more details without the Monitors having to prompt.

Important Tip: The quality of the final monitoring report depends to a great extent on the quality and richness of the data collected through personal interviews. Probing to get more complete answers to the questions or clarify the meaning of a particular statement is a very important technique for Monitors to develop.

This information about Probing is also found in Appendix H. Monitors can have it with them when they do their interviews.

(b) Working with People with Different Types of Disabilities

Monitors will be working with people with many types of disabilities or impairments. In some cases, even people with disabilities themselves have not had a chance to work with people with impairments that are different than their own. In this section, Participants have a chance to get to know about disabilities other than their own.

The guiding principle is that all people should be treated with dignity and respect. People will have their own preferences regarding how they want to be treated. The general tips provided below are meant as suggestions only. The best advice is: "When in doubt, ask the person what they want."

General Tips for Communicating with Persons with Disabilities

Where shaking hands is the custom, it is appropriate to offer to shake hands when introduced to a person with a disability. People with limited hand use or who wear an artificial limb can also shake hands in many cases. There may be other ways of greeting someone and this will be particular to the culture.
When speaking with a person with a disability, talk directly to that person, not through his or her companion or support person. This applies whether the person has a mobility impairment, an intellectual impairment, is blind or is deaf and uses an interpreter.
Use a normal speaking tone and style. If someone needs you to speak in a louder voice, they will ask you to do so.
Treat adults as adults. Address people who have disabilities by their first names only when extending the same familiarity to all others.
If offering assistance, wait until the offer is accepted. Then listen to or ask for instructions.
Do not be afraid to ask questions when unsure of what to do. It is you who is uncomfortable, not the person with the disability. For example, if you are not sure how a person communicates, or what they want, the best thing to do is ask.
Listen to the person with the disability. Do not make assumptions about what that person can or cannot do. Remember that persons with disabilities, like all people, are experts about themselves. They know what they like, what they do not like and what they can and cannot do.
Do not focus on the details of a person’s disability or impairment. Questions asked during interviews should deal with the circumstances of the Interviewee’s life, not the details of his or her impairment.
Respect all assistive devices (i.e., canes, wheelchairs, crutches, communication boards, service dogs, etc.) as personal property. Unless given specific permission, do not move, play with, or use them.
Treat persons with disabilities with the same common courtesies you extend to others.

(c) Dealing with Inconsistencies

Getting accurate information is very important in the process of monitoring. If Monitors get a sense that what an Interviewee is saying is not true or accurate, they should ask more probing questions. If there still seems to be an inconsistency in the story, Monitors should continue with the interview as normal, however, after the interview, Monitors should take the following steps:

discuss the concerns with their monitoring partner
write their concerns in the Interview Notes, explaining their reasons
discuss their concerns with the Site Coordinator. He or she will let the Monitors know what to do about these doubts. There may be ways of checking the story told or that particular interview may not be used as part of the overall data.

When making a decision whether the Interviewee is telling the truth, Monitors can consider these general observations about credibility:

Many Monitors consider a person to be credible if he or she is forceful and clear. However, the Interviewee may not be forceful or clear because he or she is powerless or has been traumatized. Also, the culture of some countries or regions may not permit the Interviewee to communicate directly or even to look at the Monitors while talking.
Confusion or inaccuracy about dates does not necessarily mean that the Interviewee’s statements are not truthful. The Monitors need to be patient with an Interviewee who is not very clear about time sequences. Some Interviewees may not refer regularly to the calendar in their daily lives. They may need to be assisted by tying the events to holidays or other dates that are well-known.
Finally, take into account local and cultural patterns of speech. For example, exaggeration may be a common trait in certain areas. An interview coming from that area may report that ‘thousands died’. In this case, it would be important to ask follow-up questions to understand whether the Interviewee only meant to emphasize that ‘many’, although perhaps not ‘thousands of’, people died.

(d) Responding to Emotions

Talking about human rights abuses may be healing for the Interviewee but it can sometimes reopen wounds and cause psychological or even physical stress. For example, telling the story of abuse may lead a person to feel that the abuse is happening again. Monitors should give the Interviewee time to cry or vent their anxiety and assure them that it is okay to do so. Helpful ways to respond include:

Offering to take a short break from the interview and then to come back and finish the interview
Changing the subject and coming back to that subject at a later time in the interview

When returning to the topic, remind the Interviewee that they can pause or stop the interview at any time.

Monitors will have a list of supports available in the community, such as trauma counseling and support networks that Interviewees can choose to contact after the interview.

(e) Dealing with Interruptions

It is important for Monitors to be aware of their surroundings during the interview. For example, if it becomes very noisy and this is disturbing the interview, stop the interview, take a break, and begin again when the environment has become quieter or, move to a quieter location.

If distractions occur, be sure that everyone involved with the interview understands what is going on. For example, if an Interviewee is deaf and is not facing the source of noise, he or she may not realize that there is noise that is disturbing the interview. In that case, the Monitors should let the Interviewee know where and what thedistraction is and how they plan to deal with it.

(f) Ensuring the safety of Monitors, Site Coordinators and Interviewees

Monitors and Site Coordinators could occasionally (it is rare) face physical or emotional dangers when performing their jobs. Here are some steps to keep Monitors and Site Coordinators safe:

If anyone feels unsafe or threatened when working in the field, for example, if Monitors find that the place where they have arranged to meet an Interviewee is dangerous, they should get themselves and the Interviewee (if he or she consents) away from the danger as soon as possible.
Avoid traveling alone if there is a risk of common crime, getting lost or getting arrested.
Make sure someone (either the Site Coordinator or a responsible family member) knows where the Monitors are going and when they plan to return. Have a plan of action in place in case you do not return as scheduled.

There may be cases when Interviewees face physical and emotional threats because of their participation in the interview process. This is not common but Monitors and Site Coordinators want to be aware of this possibility and take steps to secure the safety of Interviewee:

If doing an interview will put the Interviewee in danger, the interview must not continue.
When requesting that the Interviewee provide consent, Monitors need to review any possible negative consequences of participating in the interview and allow the Interviewee to make his or her own free and informed decision about whether he or she wants to participate.
At the end of the interview, Monitors will let Interviewees know that if the Interviewee finds that there are bad or unpleasant consequences to them because of their participation in the interviews, they should contact the disability organization running the project using the contact information provided on the Information Sheet.

(g) Keeping the Monitoring Information Confidential and Private

The Monitors assure the person before interviewing them that the information they share as well as their personal information (name, contact information) will be kept confidential. It is important that this promise be kept.

Here are some ways to make sure that the Monitors protect the privacy and confidentiality of the information given in the interviews:

Choosing a location for the interview that is safe and private.
Ensuring that no identifying information about the Interviewee (for example, names and contact information of Interviewees and people who can give more information about the situations raised) is included on the audio recording of the interview or in the Interview Notes. Identifying information will only be written on the Identification Sheet and Consent Form. Site Coordinators will review the interview records to make sure that personal information is kept separate from all other reports of the interview.
Labeling the audio recordings (tape cassettes or digital files) and Interview Notes from the interview with the alphanumeric Interview Code assigned to the interview.
Giving all interview records (Consent Form, audio recording, Identification Sheet, Interview Notes) to their Site Coordinator as soon as possible after each interview. As soon as possible, Site Coordinators will then transfer all interview records to the Project Coordinator. When Monitors, Site Coordinators and the Project Coordinator have the interview records in their possession, they are responsible for keeping them in a secure, locked location. Note that Identification Sheets and Consent Forms should be kept in a different secure location from the audio recordings and Interview Notes. Where records are stored in electronic format (for example, digital audio recordings), access to the computer where the files are stored will also be secured.
Never referring or talking about statements made by one Interviewee when interviewing another Interviewee.
Not discussing the information shared by Interviewees with anyone other than their monitoring partner and the Site Coordinator (this means Monitors should not talk about Interviewees’ experiences with family members friends or anyone else).

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