The Paper Is About Moral and Ethical Challenges and Pitfalls One Is Likely to Encounter

Introduction

The paper is about moral and ethical challenges and pitfalls one is likely to encounter as a qualitative researcher interviewing families of disabled children and youth in a small society where face to face interaction characterizes social encounters.

Background

Iceland In a country like Iceland, a prosperous, highly modern, Nordic welfare society with a population of 300.000 people, it is inevitable that it is hard to disguise any research informants. This applies even more to disabled people and the families with disabled children and youth. This poses all kinds of research challenges. Further, geographic and social proximity within such a small society invites other concerns like role conflicts both for the researcher and his or her research participants, over identification of the researcher with the research participants, and last but not least over use and the exploitation of such research participants.

Ethical concerns

Most concern in the literature and practice of qualitative research revolves around issues of harm, consent, deception and privacy (de Laine, 2000: Punch, 1998: Christians, 2000). In qualitative research the researcher enters into a relatively close relationship with the research participants, for example in the interview situation. Participation is grounded in trust. Bad mistakes may do harm both to the researcher and to the research participant and close the door for further research. But too much concern with the possible pitfalls can reduce the flexibility of the fieldwork situations, reduce the quality of the data to platitudes of little use for analysis.

Qualitative studies frequently make use of unstructured or semi structured open ended interviews rather than structured interviews. From the perspective of disability studies such interviews can be seen as a particular kind of intimate person to person encounter between the researcher and the research participant. Such encounters entail ethical considerations involving the researchers role,

1 the consequences of the use of information, confidentiality, anonymity and so forth. For example, both in interviews conducted within disability studies

Personal baggage The paper draws upon lessons I have learned over the past 25 years from doing qualitative research for almost thirty years As much qualitative research is carried out in local communities in or near research institutions and Universities these lessons may be of use to researchers in communities within larger societies.

I have committed many of the errors reported in the qualitative research literature. I have however consciously tried to stay with the basic rules of building trust with informants, keeping confidentiality and doing no harm, but even here I have found myself on slippery slopes. And the experience of being a mother of a son with significant impairment.

My current research project focuses primarily on parents experiences of formal and informal support provided to them and their disabled children and youth. The data is primarily gathered through semi-structured open ended interviews with parents. I use examples from that research to illustrate some of the ethical dilemmas under discussion here.

Ethical issues

Ethics issues are always present in qualitative research which is filled with unanticipated occurrences, feelings, lies, unexpected revelations, and unequal roles and power balance. In qualitative research the researcher is himself the research instrument. The researcher, with his or her research participant, creates the text of the research material, interviews, observation, field notes and the research reports. The readers engaged with the text of the final report then carry out the final interpretations – each according to his or her interpretation of the finished document.

There are different stances regarding ethical issues in qualitative research. Two of those are of particular concern here. They are the absaloutist stance, which addresses the following four ethical concerns; protection of participants from harm, prevention of deception, protection of privacy and

2 informed consent. Those who adopt this stance argue that social scientists have no right to invade the privacy of others because such invasion may cause harm to research participants. In contrast the relativist stance states that investigators have absolute freedom to study what they see fit, but they should study only those problems that flow from their own experiences. Agenda setting is determined by personal biography of the researcher. Thus the only reasonable ethical standard is one directed by the researchers conscience. No single ethical standard can be developed because each situation requires a different ethical stance. From this point of view the researcher is advised to build open sharing relationships with his or her research participants and involve them as much as possible in each and every state of the research process and interpretations (www.sahealthinfo.org).

The difference between these two stances is not clear cut in practice.

Punch summarizes the kind of questions that are asked in the research literature on ethical standards in qualitative research as follows:

“What is public and what is private? When can research be said to be “harming” people? Does the researcher enjoy any immunity from the law when he or she refuses to disclose information? In what way can one institutionalize ethical norms –such as respect, beneficence, and justice (Reiss, 1979) – to ensure accountability and responsibility in the use and control of human subjects? And to what extent do betrayal of trust, deception and invasion of privacy damage field relationships, make the researcher cynical and devious, enrage the “participants” in research, harm the reputation of social scientific research, and lead to malpractice in the wider society? (Punch, 1998 p.169)

Feminist and disability studies research is carried out not only to develop “new knowledge” or open up new perspectives, but also to give voice to groups that are normally not heard or listened to, unmask injustice, oppression, exploitation and exclusion with the stated aim of improving life for oppressed or vulnerable people. Feminist scholars for example emphasize identification, trust, empathy and nonexploitive relationships in all their research (Finch 1984, Oakeley 1998).

3 Examples from the field

Access Much has been written about problems researchers have had with gaining access to their field and getting past gatekeepers. I have had problems getting access to research participants in the past. But mostly I have found it relatively easy to gain access, particularly access to parents, professionals and disabled people.

The willingness of mothers of disabled children to participate in my research is gratifying but it also courses me concern. Many of the mothers/parents I have enlisted to help me with my research apply to do so because they want to contribute their experiences in order to inform and enlighten professionals, politicians and the general public about the fate of their children, and thus combat stigmatization and prejudice. Each story is a unique gift. By accepting it, blurring individual details in the writing up process, publishing articles in academic journals and often in English, and using them in teaching, I am taking these valuable gifts and applying them for my own ends. Even though I hope that my work gets published and read, I cannot even guarantee that. Thus the giving of the gift rests on trust and faith.

I am concerned when I learn that some of these parents have over the years been swamped with requests for interviews by students from upper secondary schools, universities and university departments for their essays.

One mother, Sigrun, a parent of a child with an unusual impairment said, when I phoned her to ask for an interview:

It is OK, you can come because I know who you are. But I am getting a little tired of telling our story. Only this year I have contributed to at least nine or ten essays. I have never seen any of them…Students just come with their questions about difficult aspects to our lives, tape my answers and leave. I never know what they do with the stuff. I want to help …and I do it because I want young people to understand…but sometimes it is very difficult.

4 I have found it difficult to get fathers of disabled children to an interview, especially if I ask to interview them without having their wife or partner present. Typical explanations are: “ I cannot find time”, “I work away from home”, “ask the wife, I know much less about what happens around my (disabled) child, she sees to all that and tells me if there is something I need to do”. Sometimes an appointment is made, but when I turn up the father is at work or out on an errand. To reschedule can be difficult.

The explanation may come down to gender issues and trust. The mothers are more likely to trust in our shared experience as mothers, and many welcome the opportunity to talk about their experiences to an insider. This poses questions about ethics. I as the interviewer, am also an outsider, the mothers may tell me more than they ever expected or wanted to tell. The telling can be hard and the interview is not a therapy session. I use my empathy, but I am not trained as a therapist and cannot go down that road even if I wanted to.

Parents tell their stories in the hope that by the telling they can affect change in services, social policy or societal attitudes. It poses the researcher with moral dilemmas to dampen such hopes and yet try in some way to live up to them when publishing.

The interview situation

In interpretive (hermeneutic) social science there is a general acceptance that present experiences shape who we think we are and who we become. How we read our experiences and those reported by others is not what happened but an outcome of a transaction between ourselves and the text. The interview situation is a good example of such transaction. The telling and the listening may reconstruct our understanding of both the text and of who we think we are.

Bulding raport When interviewing parents, I always start by explaining what I am doing without going into a great detail. I talk about what the research is about, explain that I have a list of topics but not pre- designed questions, promise confidentiality, ask permission to record the interview, and answer any questions they may have. I also tell them that it is up to them what they chose to tell me and that we

5 can stop the interview any time, or if they regret anything they said later, I will erase the interview and not use it for the research purpose. All this is standard procedure.

I normally start the interview by asking about the family: Tell me who are the people in your family? ...Most respondents find it easy to sketch out a brief description of their families and the interview can move on.

The interview Next I move on by asking the parent to describe their child – or in some cases children – labeled with disability, the child’s strengths, personality, charm and needs. Most, but not all the parents use this question to draw up the strengths, abilities and charm of their disabled child.

A few parents answered the question by giving a detailed medical account of everything that was seen to be not right with their child. One mother, Gudrun went as far as explaining to me using Latin medical terms which of her daughters chromosome was irregular, why and how that might have happened – and what the future prognoses of her child’s condition might imply.

Face to face with ethical dilemmas in the field

The interview with Gudrun highlights a number of ethical dilemmas that are related to the role of the researcher vis a vi the research participant in the field. These include questions about roles and role-conflict, unequal power relations, overconcern and the researcher - therapist dilemma. An extract from the typed interview with Gudrun and my fieldnotes will therefore be quoted at length.

Gudrun, who described her daughter by her medical condition and labels, seemed surprised when I stooped her and asked her about her daughters strengths and interests. She said with tears in her voice:

6 Gudrun: She is lovely, of course, but nobody wants to know that. Everybody asks about her problems.

D. How is that?

Gudrun does not get a word out, cries.

Gudrun: I do not know why I am crying…

D. [Hands her a tissue]:It is OK, I understand. Do you want to try or shall we stop the interview for now?

Gudrun: No, no [smiles but keeps crying]. Just give me a moment and I will try…

D. [tears blur her own vision, holds them back. Waits]

Gudrun: When she was borne, she could not suck milk from my breast…it took hours to feed her.. I had lots of milk but it sort of dribbled into her mouth…that was when I first suspected that she was not OK [keeps on crying]

D. Mmm. It is hard to have to remember…we can move on to…

Gudrun: No, it is all right, I just get so angry… there was no understanding here...you see, this was all my fault. I was not considered diligent enough when trying to feed her, and if I start thinking about that I get so very angry. Nobody wants to be seen as incapable. The midwife caused me so much heartache..

D. Well? [hands more tissue]..

Gudrun: But, it soon became clear that this was not my incompetence…she simply did not have the strength to suck….and then when she was a few months old I noticed that

7 her movements were not as.... She could not turn over from her back to her stomach and such. Something was obviously wrong…

D: I had the same experience but I did not know enough about babies to realize ... [what this might mean].

Gudrun: [has now almost stopped crying] I was in a group for young mothers here and could compare my daughter’s development with that of other babies…I took her to our GP who sent her to a physiotherapist… After a while the physiotherapist suggested that I take her to a paediatrician…I did that and the paediatrician sent us on to a neurologist…He eventually found that my daughter has a muscular disease…even now nine years later problems keep popping up, and we do not know where this is going to lead…

D. And??

Gudrun [trying to hold back her tears and fisting her fingers]: But... after the first couple of consultations my daughter’s case got lost in the system. He [the specialist] was very busy, you see, I do blame it on that. Anyhow nothing happened. Everything stopped, I find this a bit difficult. You are so easily forgotten in this system. You are interesting while the diagnosis is being carried out, then when they have found out what is the matter, then you are instantly forgotten. This is how I experience this, is this also your experience?? [more crying].

D. Yes and no, but…?

Even though there were problems with breastfeeding at the maternity ward, mother and child were sent home. The baby became undernourished. The mother felt that the midwife blamed her. The mother and baby were then sent to a main hospital far away from their home, without a significant other for support. At the hospital the doctors found nothing wrong, and they returned home. The mother felt that this became the talk of her village and that no one stood by her except

8 her mother. She felt that neither her husband, her siblings or in-laws believed that she was a good mother. In the interview I opened up this particular can of worms.

This episode poses a number of questions. Should I have stopped her when the telling was so obviously painful and personal? I could have done so despite her wanting to tell her story. Or may be my status as a researcher compelled her to tell. After all, she had promised to be a research participant. Unequal power relationship tends to be part and parcel of the interview situation, unless this is specially controlled for in the research design (Atkinson 2004). Or perhaps she was first and foremost talking to me as one mother of a disabled child to another whom she believed would understand her and empathize. I am not, even now, certain whether I should have gone on with the interview or not - or how I could have dealt with it better. But perhaps I am being over concerned? I did offer her to stop, but Gudrun wanted to continue. Stopping her in her track might have been abusing, implying that I did not respect her enough to listen - that her story was not worth telling, that she was wrong, her story too detailed - and more. I think I respected her by listening. I also tried to show that I respected her feelings. Yet, my probing caused her to revisit some of the most difficult moments in her life. Was that right? I have dealt with similar interview situations in this manner before, but the overarching question remains: how far can one go in the interview situation without transgressing acceptable ethical standards in the pursuit of research?

Does the telling of Gudrun’s story and my listening to it impinge upon her as a person, who she thinks she is and who she will become? Does the listening affect my interpretation of my self as a researcher and as a mother of a disabled son? And if so , how does the telling and the listening and the interpretation of the text affect our understanding and the reading of the text?

Conclusion

The paper has raised only a few of the questions about ethical conduct that most qualitative researchers are bound to ask themselves when engaging research participants in semi-structured or open ended interviews.

It is easier to pose difficult questions than to answer them, but I hope the posing of the questions in this paper will further stimulate thought amongst students of disability research and that of students

9 and scholars using interviews in qualitative research. What is particularly problematic for the particular research drawn upon in this paper is that by asking parents questions about their disabled child or children may involve adding to “the Othering” of these children and their families. That is also a dilemma I will try to address elsewhere. Immanuel Kant’s categorical imperatives provide an ethical guide to help conclude this paper..... “One cannot ever suppose a right to treat another person as a mere means to an end. To do that in disability research is not only unethical but also contrary to the hope shared by our field, which is that research explores, explains, but also improves the lot of disabled people, gives a voice to people not normally heard and leads to their empowerment.