2. We want to do this research as partners with people who have Down's.
3. A lot is known about doctors' and nurses' views about screening and life with a disability.
Little research has been done about the views of the people they want to help.
4. The planners need to know more about the views of the people they want to help, if they
are to plan useful health and screening services.”
I interviewed three people, a colleague interviewed John who wrote to us in response
to our article in a self-help journal asking for interviewees, and a speech therapist
interviewed Colin, whose mother contacted us through the journal and who lived a
long distance away. All the other groups in the study were easier to contact and were
each interviewed by one researcher.
During the interviews
With their consent, four of the people with Down’s syndrome were tape-recorded and
notes were made of the other interview. Three people were interviewed at home and
two at their college, from between 30 to 150 minutes. To encourage them to talk
freely, and to share control over the topics, pace and style, open questions were used,
such as: “Will you tell me about the schools you went to?” Prompting questions
elicited varied individual narratives in an informal conversational style. We hoped
that they felt confident that their views were respected and not judged for their
correctness. We aimed to establish mutual trust and rapport (Oakley, 1981; Smith,
1994; Booth and Booth, 1996; Ward, 1996; Rodgers, 1999), and to move from the
formal to the “private” voice when people express more personal views (Cornwell,
1984). Some people with Down’s syndrome speak slowly and rather indistinctly, so
that the whole pace of the interview is slower; I repeated some words to help with
later transcribing of the tape recording, hoping that this sounded respectful.
I felt anxious about asking people, in effect: “What are your views about the value
and quality of your life? Do you feel your life is worth living? Did/do your parents
want you and what might they have decided if prenatal tests had been available to
them before you were born?” These sensitive questions were not asked directly,
although several interviewees, including one with Down’s syndrome, raised the later
ones. Most of the 40 interviewees talked openly about screening, but those with
Down’s syndrome and spina bifida were most likely to express or imply distress about
this topic, so that direct questions were more limited with them. Instead, through
enquiring about their everyday and past lives, and their hopes and concerns, we aimed
to create a picture with each person of their positive and negative experiences, of the
value and quality of their life to them, and of potential lives with their condition.
After the interviews
When I phoned a week later, everyone said they felt all right about the interview and
had nothing to add. I sent transcripts and a short end of project report, asking if they
wished to have details of published reports. No one with Down’s syndrome replied. I
met two of them later at a performance of their play. I analysed transcripts by hand,
and reread them for the overt themes, reported here in the order they were discussed
during interviews, and for underlying themes: quality and value of life, costs,
dependence, contributions to family and society, discrimination, replies which fitted
mainly the medical or social model of disability.
Interviews about living with Down’s syndrome