Llamar a PTZ

6.1.1 The participants were expected to be in middle adulthood, between 30 and 55 years of age. I wanted to include participants in adulthood, but did not want developmental issues to cloud the data.

6.1.2 The participants were required to have been given a diagnosis of cerebral palsy in their early childhood, by a medical practitioner.

125 6.1.3 I wished to include participants who presented with significant communication

impairments that were associated with their cerebral palsy. However, given the nature of the research, the participants were required to have a form of communication that would allow them to communicate with me, such as AAC, gestures, written language, or speech that was intelligible to me as a stranger at least some of the time. I

determined this in the first meeting with the potential participants.

6.1.4 I expected that the participants would not experience communication impairments that were not related to cerebral palsy, such as acquired communication impairments following stroke.

6.1.5 I required the participants to be able to speak and understand sufficient English so as to participate in the study, including being able to give their consent to participate. I evaluated this in the first meeting with the participants.

6.1.6 I required the participants to be able to understand the research questions, and engage in communication with me such that they could provide argument, information, and could do so spontaneously. Please refer to the “Recruitment” section for more detail on how this criterion was established.

6.1.7 I did not wish to include people with cerebral palsy whom I had seen for speech- language assessment or therapy as children because of the preconceived ideas that I might have brought to the interpretation of the study.

6.2 Recruitment

Many people with cerebral palsy know one another in South Africa, and so I used snowball sampling (King & Horrocks, 2010) where the participants suggested the names of others they thought would be a appropriate participants in the study. To protect anonymity, no

participants were told who had elected to participate in the study. In addition, I recruited the names of potential participants from residential homes for people with disabilities, from speech-language, occupational and physical therapists that I knew were involved with adults with cerebral palsy by virtue of their membership with professional associations, and from people that I knew having been involved with people with cerebral palsy professionally for many years.

The recruitment of Black participants with cerebral palsy proved to be difficult because of the difficulty in determining whether their impairments were indeed due to cerebral palsy. Many disabled adults did not know if they had cerebral palsy, and some labelled themselves as living with cerebral palsy even if this were not accurate – for example, if the person lived in

126 an institution for “cerebral palsied adults”, he or she assumed that they had cerebral palsy. A number of potential participants that I met with turned out to have childhood acquired lifelong conditions, such as post motor vehicle accident TBI; acquired encephalopathy such as that due to childhood meningitis; as well as genetic syndromes. I only accepted

participants who had been given a definite diagnosis in childhood of cerebral palsy.

I contacted the potential participants telephonically or by e mail, and set up appointments to go to see them. In many instances, I had to set up the initial meeting by speaking to a second party because there was no other way to communicate with the potential participant. I wanted to prevent gatekeeping, so indicated to the relevant contacts that I was seeking to include people who had cerebral palsy and significant communication impairments but who had some form of communication.

My initial interview with every potential participant was an informal meeting at the person’s home. The meeting was private and no other people were present in the room. In some cases, I had to persuade the significant others, including parents and caregivers, that I was willing to talk to the person and that I would be able to make myself understood and that I would call on them if need be. At this meeting, I posed one broad question: “I am interested in doing research with adults with cerebral palsy. From your experience, what do you think I should be looking at?”, and if that question was not understood, it was re-worded as “We don’t know much about what it is to be an adult with cerebral palsy. What should we know?” I was interested in two aspects pertaining to the replies:

(i) Could the participants understand that question and subsequent questions so that they would be able to participate in the research? I did not want to include people who could not understand the concepts involved. Although a large percentage of people with cerebral palsy are intellectually disabled, there is a vast range in intellectual ability. In order to better the chances of saturation, it was necessary to limit the group of participants to those who could engage with the concepts that I was intent on researching. This was of course, linked to how they were able to respond.

(ii) Could I use strategies to help the participants to express themselves sufficiently for me to interpret their meaning? I did not exclude anyone on the basis of limited communication expression. My training and experience as a speech-language therapist allowed me to engage with the participants from the start. I took with me

127 a spelling chart that would allow the participant to spell out a word; I also used a basic set of pictures from PCS13; and I used yes/no questions. I did much

interpreting of signs and/or verbalisations and asked “is this what you are telling me?” The decision as to whether to include the participant or not was based on how they responded to my interpretations of what was said: I looked for affirmation but also for argument, as well as if the participant could add any further information without prompting.

At this stage, I rejected four potential participants from the study.

I was concerned about mailing an invitation to participate and information sheet because I was not certain about how much agency and choice the participants would have given their communication impairments. I was more confident that having personal contact with the potential participants was likely to be more effective. At the meeting, I introduced myself, and explained the study, staying as close as possible to the information sheet that had been prepared so that I would not come across as too convincing or as coercive. At the end of the meeting, I left the participants with a copy of the information sheet. The participants were invited to contact me if they wished to participate or if they wished to decline the invitation to participate. They were given my e mail address and cell phone telephone number so that they could message me without having to talk to me if so desired. This lack of personal contact with me would possibly make it easier for them to decline participation. I informed them that I would contact them within a week if I did not hear from them. Five participants agreed at the first meeting to participate. I made contact again with the additional participants about a week later. If they agreed to participate, I made a follow-up appointment with them. The participants were not all recruited at the start of the study but as the study evolved.