Knowing the limmits: Some ethical issues in interviewing parents of disabled children 1

1. Knowing the limmits: Some ethical issues in interviewing parents of disabled children1 Dóra S. Bjarnason: the NNDR Conference in Gothenburg 10th to 12th of May 2007 NNDR 07 D. S. Bjarnason

2. Introduction • The paper is about moral and ethical challenges and pitfalls • one is likely to encounter as a qualitative researcher • interviewing parents of disabled children and youth • in a small society where face to face interaction • characterizes social encounters. NNDR 07 D. S. Bjarnason

3. Iceland • In a country like Iceland, a highly modern, Nordic welfare society • with a population of 300.000 people. • , It is hard to disguise research participants. • This poses challenges re trust and of protecting the identity • of research participants. • Geographic and social proximity invites concerns re role conflicts both for • the researcher and theresearch participants • , and over identification of researcher with research participants • , and last but not least the small scale society also invites the over use • and the exploitation of parents and disabled people as research participants. NNDR 07 D. S. Bjarnason

4. In Qualitative research • Semi-structured interviews involve intimate person to person • encounter between the researcher and the research • participant. • Such encounter entail ethical considerations involving • the researchers role, the consequences of the use of • information, confidentiality, anonymity and so forth. • Personal baggage NNDR 07 D. S. Bjarnason

5. Punch summarizes questions asked in the research literature on ethical standards in qualitative research: “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) NNDR 07 D. S. Bjarnason

6. Face to face with ethical dilemmas in the field The interview with Gudrun highlights a number of ethical dilemmas 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. NNDR 07 D. S. Bjarnason

7. Gudrun, who described her daughter by her medical condition and labels, seemed surprised when I asked her about her daughters strengths and interests. Gudrun [with tears in her voice] : 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] NNDR 07 D. S. Bjarnason

8. 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 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… took her to our GP who sent her to a physiotherapist… NNDR 07 D. S. Bjarnason

9. 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…? NNDR 07 D. S. Bjarnason

10. 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 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. NNDR 07 D. S. Bjarnason

11. Whas the interview carried out in an ethical manner? Should it have been stoped? How could it have been done in a “better” way? NNDR 07 D. S. Bjarnason

12. Conclusion • The problem of Othering • Kant´s categorical imperatives provide • an ethical guide: a person has • perfect duty not to use itself or others merely as a • means to some other end. • Thus, one cannot ever suppose a right to treat • another person as a mere means to an end. • To do that in disability research is unethical and contrary • to the research purpose - to explore and interperate, • but also improve the lot of disabled people, • give a voice to people not normally heard. NNDR 07 D. S. Bjarnason