South Asian heritage myself was considered
a unique asset in providing extensive knowledge
of this cultural group and thus
supporting a greater understanding that
other researchers might not have had.
Method
The study was guided by a social constructivist
lens (Denzin & Lincoln, 2011) and
utilised a grounded theory approach. This
methodology was originally designed to facilitate
the emergence of theory arising from
complex social situations in real world
settings (James & Leydon, 2010) with the
important purpose of allowing researchers
to develop theories to help them understand
their data. The model of grounded theory
adopted was that of Corbin and Strauss
(2008) who argued that it is necessary for
researchers to capture the full complexity of
human experience by understanding it
within the context of the individual’s social,
political, cultural and racial frameworks.
They also offer clearly defined and systematic
procedures for analysing data and the
eventual generation of a theoretical model
to help explain the findings.
This research was undertaken as a
doctoral research project and ethical
approval was gained from the University of
Bristol Ethics Committee in March 2012,
before any parents were contacted and
invited to take part. Professionals based in a
south-east England Local Authority that
worked closely with parents and families
(such as Educational Psychologists, specialist
teachers, area SENCO’s) were approached
and asked to contact parents who might be
interested in taking part in the research.
They were asked to contact parents they had
worked with who identified themselves as
South Asian and who had a child with
autism. These professionals passed on an
information sheet and consent form and
asked any parents that wanted to take part to
send their signed consent form directly to
the researchers, hence protecting their
anonymity.
In total nine parents agreed to take part,
five mothers and two sets of mother and
father. Two parents were born in the UK,
whilst the others were born in South Asia.
The range of South Asian countries they
originated from included Pakistan, India
and Sri Lanka. All discussions took place in
the parents’ home and were in English. With
their consent the interviews were recorded
and lasted between 50 and 120 minutes with
the average interview lasting 70 minutes.
The age of the parents varied from around
30 to 60 years old and they came from a
range of working backgrounds including
teaching, psychiatry, housewife, nursing,
factory work and adult care-work.
In April 2012 a pilot interview was
conducted to help refine questions in preparation
for the first interview. In line with the
grounded theory framework, the responses
given by parents influenced the context of
subsequent interviews, to help follow lines of
enquiry and generate a grounded theory
model. Therefore, no set interview schedule
was used to structure discussions.
To analyse the data it was first necessary
to transcribe the interviews and then
conduct a line by line analysis of the data in
order to identify keywords and phrases that
were recurring in the discussion or that were
felt to be particularly relevant to the research
questions and should be explored further.
For example, very early on in a discussion
with a parent they talked about their difficulty
in understanding the term autism and
the fact that it did not exist in their home
country. This was something that stood out
as significant and required further exploration
as it seemed very important in understanding
the experience of having a child
that has been labelled with autism.
After the line by line analysis, the next
stage was to write detailed descriptions (or
‘memo’s’) of words, phrases or extracts in
the transcript and explore them in depth to
help develop ideas about possible themes or
things to find out more about. This was a
long process and a key vehicle of the analysis,
as the memo’s enabled a generation of ideas