Ethical considerations

The proposal to conduct this study was approved by two university ethics committees, one being the university at which I am registered as a PhD candidate and the other being the university at which I was employed at the time. The certificates of approval are included in the appendix (University of the Witwatersrand: NM101015; Stellenbosch University: N10/08/247).

4.1 Ethical concerns

The study was conducted on a group of people who are considered by ethical boards to be “vulnerable” (Penn et al., 2009). The concerns included the following:

4.1.1 Coercion: I was cautious not to convince the participants to take part in the

study. Fortunately I had a fairly large sample that I could approach and was not under pressure to find participants.

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4.1.2 False hope and expectations: I was concerned that the participants should

understand that taking part in the study was limited to a 6-month period, and that I would have no contact with them thereafter. Participating in research can be therapeutic and meaningful for participants, but these experiences too can be

problematic. People with communication impairments, particularly if the impairments are significant, are often lonely (Ballin & Balandin, 2007). Many also live with significant physical impairments and cannot get out and mix socially (Orlin et al., 2010). For such participants, the social contact with the researcher may be rewarding, and may be regarded as personally meaningful. It can be difficult to set boundaries as the researcher, and to terminate the connection upon completion of the research. I was aware that I might run the risk of participants misconstruing the interviews and the relationship with me as friendship. On the other hand, there is danger that data can be restricted and narrow when the researcher insists on maintaining a distance, while not allowing reciprocity in the research relationship to develop and become intrinsic to the research process, as articulated by Peterson (2011) in her reflections of her research as a White able-bodied women conducting research with Black disabled women. Throughout the research process, I remained cognisant of these potential problems and was able to manage them by discussing the issues with the participants. In addition, I treated the research relationship as a therapeutic one and worked

towards termination by gently reminding the participants that the research was working to a close.

4.1.3 Benefit: It was important that the participants were made aware that that they

were not necessarily going to derive any immediate benefit from their participation in the study. They were made aware of this issue in the information letter.

4.1.4 Anonymity: I assured the participants that I would not inform anyone of their

participation in the study. I also assured them that I would not reveal their identity through my study to any person, and would not describe their experiences in a way in the study that would reveal their identities. I selected pseudonyms for the participants.

4.1.5 Privacy and confidentiality: The participants took part as adults, and so I

refrained from discussing what they had told me with their caregivers, parents or any other people associated with them. I also insisted on interviewing them in a private place, and alone.

4.1.6 Video-recording: Recording is recommended for research. However, for some

122 were given the option of no recording but I explained that I required an audio

recording, if possible, so that I would be able to analyse the data. I assured the participants that the only people who would have access to the recordings other than myself would be my research assistant, my supervisor, and only if the need arose, members of the University Ethics Committees. All participants agreed to be audio- recorded. Three participants agreed to be video-recorded.

4.1.7 Emotional vulnerability: Sharing personal information with strangers is

unusual. Asking participants about their private lives, to talk about topics that may be difficult in nature and content, might be viewed as being therapeutic (Moyle, 2002) but being therapeutic requires a lot more than simply providing an opportunity to talk. Whether or not the divulging of private, deep and meaningful information is treated as therapeutic or not is of ethical concern (McKeown, Clarke, Ingleton, & Repper, 2010). The topic of the study was personal, and I anticipated that it might have evoked some anxiety or sadness. I mentioned this to the participants at the beginning of the study as throughout the study, I reminded the participants that they were not obliged to talk to me about anything that made them uncomfortable. I also made the participants aware that they would have the choice about reading the final study, to comment on its reflection of their experiences. I informed them that this might be upsetting and that they were prepared for this. All of the participants were offered, before the start of the study as well as at times through the study the opportunity for professional counselling by a social worker, but no participant felt that this was required.

4.1.8 Interviews can be difficult contexts for people with communication

impairments. Interviews are oral contexts, demanding that participants communicate, most of the time orally, and often using AAC (e.g. Brewster, 2004), sign language (e.g. Arndt, 2010) or assistive devices (e.g. Ferm, Sahlin, Sundin, & Hartelius, 2010). By definition, people with communication impairments have difficulties

communicating, so the researcher is placing the participant in an inevitably stressful, demanding context. Researchers have identified distress that participants can

experience from becoming tired in interviews, being upset by the topic, becoming anxious if they think that the interview is an assessment of their ability to

communicate, and from fatigue leading them to misinterpret questions (Carlsson et al., 2007; Paterson & Scott-Findlay, 2002). I discussed these issues with the

123 participants, and remained cognisant of the pressure that they were under to

communicate.

4.1.9 Desire to leave the research process: All participants were informed by me as

well as in the information sheet that they were free to decide to leave the research project at any time. No participant left the study.

4.2 Obtaining informed consent

In the first meeting with each participant, I described the study in full. I had drawn up an information sheet which had been approved by the University Ethics Committees (A copy is in the appendix). I went through the form with the participants and answered any questions that they had. I then informed them that I was not in a hurry for their answer and would leave the information with them for a week or so. If they wished to decline participation, they could let me know by text message to my cellphone, by e mail, or by asking a second party to phone for them. Five participants agreed in the first meeting to participate, and four

participants agreed after a week when I contacted them by e mail, or by texting messages on cell phones. Two potential participants declined the invitation to participate.

I went through the written informed consent form with the participants. Those who could sign did so. I signed on behalf of those who could not sign, in the presence of a witness.

4.2.1 Informed consent from communicative partners

I obtained informed consent from communicative partners for the observations, where appropriate and possible. These participants were given an information sheet and provided written consent to participate (A copy of this form is in the appendix). For example, in a restaurant, I did not get consent from waiters; however, in family interactions, I obtained written consent from participating family members.