Journal of Intellectual & Developmental Disability, 2015

Vol. 40, No. 1, 78–91, http://dx.doi.org/10.3109/13668250.2014.964191

CONCEPTUAL PAPER

Qualitative research with families living with autism spectrum disorder:

Recommendations for conducting semistructured interviews

ELIZABETH K. CRIDLAND1,2, SANDRA C. JONES2,3, PETER CAPUTI1,2 &

CHRISTOPHER A. MAGEE2
1
School of Psychology, University of Wollongong, Wollongong, Australia, 2Centre for Health Initiatives, University of
Wollongong, Wollongong, Australia, and 3Centre for Health and Social Research, Australian Catholic University, Melbourne,
Australia

Abstract
In this paper, the insights and experiences of a research team involved in conducting qualitative research with families living
with autism spectrum disorder are drawn upon to provide reflections and recommendations across all stages of the qualitative
research process. Particular attention is given to the steps involved in semistructured interviews, specifically, interview guide
preparation, participant recruitment, obtaining informed and voluntary consent/assent, conducting effective interviews,
accurate analysis and interpretation of data, ways to involve participants in data analysis, effective communication of
research findings, and providing feedback to participants. In addition, reflections and recommendations are provided for
maintaining researcher health throughout the qualitative research process.

Keywords: autism spectrum disorder, qualitative, family systems, research methodology, semistructured interviews, self-care

Introduction and emphasis on presenting rich descriptions rather

than on testing a priori hypotheses (Krogh &
Research focusing on the experiences of individuals Lindsay, 1999). In addition, qualitative approaches
with autism spectrum disorder (ASD) and their are considered an appropriate method when involving
families is on the rise (Bayat, 2007; Bradford, 2010; children (Dockett, Einarsdottir, & Perry, 2009;
Hastings & Taunt, 2002). Reasons for this growing Mishna, Antle, & Regehr, 2004) and individuals with
research attention include the increase in individuals disability (Barnes, 1992; Cocks, 2008) in research.
being diagnosed with ASD (Boelte & Poustka, 2000; Of the range of qualitative methods (e.g., unstruc-
Duchan & Patel, 2012; Fombonne, 2002, 2003), and tured interviews, focus groups, observations, diaries,
a growing recognition of the importance of under- etc.), semistructured interviews are one of the most
standing the complex impact ASD has on families commonly used in this research area (Krogh &
(Cridland, Jones, Magee, & Caputi, 2014; Morgan, Lindsay, 1999). Semistructured interviews involve
1988; Seligman & Darling, 2007). Many of the in-depth conversations between the researcher and
studies in this area have used qualitative methodologies interviewee, which have an overall purpose prompted
(Cocks, 2008; Mascha & Boucher, 2006). The by the research aims, but are strongly guided by the
benefits of using qualitative approaches when investi- interviewee’s perceptions, opinions, and experiences
gating families living with ASD include their capacity (Carrington & Graham, 2001; Minichiello, Aroni,
to measure complex issues (such as family dynamics Timewell, & Alexander, 1995). The benefits of
and mixed or ambiguous attitudes; Cridland, Jones, using semistructured interviews with families living
et al., 2014; Dew, Balandin, & Llewellyn, 2008; with ASD include flexibility to focus on issues that
King et al., 2006; Meadan, Stoner, & Angell, 2010) are meaningful to participants (Barbour, 2000),

Correspondence: Elizabeth K. Cridland, School of Psychology, Building 41, University of Wollongong, Wollongong, NSW 2522, Australia. E-mail: ekc977@
uowmail.edu.au

© 2014 Australasian Society for Intellectual Disability, Inc.

 ASD and qualitative research 79

permitting diversity of perceptions rather than being These and other experiences warrant specific
inhibited by “standard” or “expected” response cat- considerations for conducting research with this
egories (Mascha & Boucher, 2006; Petalas, Hastings, population.
Nash, Dowey, & Reilly, 2009), and minimisation of The reflections and recommendations throughout
researcher control over participants’ expression of this paper cover all stages of the qualitative research
their experiences (Brewin, Renwick, & Fudge Schor- process. Figure 1 depicts these stages, which
mans, 2008). include research preparation, data collection, data
Literature exists for conducting qualitative analysis, and dissemination of research findings.
research with children (Docket et al., 2009; Mishna Consideration is also given to the health and well-
et al., 2004) and individuals with learning disability being of researchers in this area across all stages of
(Cocks, 2008; Krogh & Lindsay, 1999). However, the research process.
despite the increase in qualitative research conducted
with families living with ASD, we were unable to
identify guidelines specifically for conducting Preparation
research with this population. Identification of Interview guide development
specific considerations for conducting qualitative
research with individuals with ASD and their families Preparation is an important aspect of all research
is needed, as literature based on either neurotypically (Dickson-Swift, James, Kippen, & Liamputtong,
developing (NTD) children or individuals with other 2007, 2008; Sandelowski, 1995). A critical
disabilities cannot be directly applied to individuals component of preparation in qualitative research
with ASD. Central to this are the various social and using semistructured interviews is the development
communication impairments, behavioural difficul- of the interview guide (Minichiello et al., 1995). The
ties, and cognitive processing differences inherent interview guide underpins the interview process
in ASD (Attwood, 2007; Deruelle, Rondan, and therefore influences subsequent research stages
Gepner, & Fagot, 2006; Sachse et al., 2013). There (Minichiello et al., 1995). Given the range of consider-
are also various unique experiences for family ations related to interviewing an individual with ASD
members of individuals with ASD that are worthy (such as discomfort discussing certain topics, prefer-
of consideration when conducting qualitative ring to discuss topics of interest to them), a strong
research with this population. Such unique experi- interview guide is likely to help researchers focus on
ences include positive and rewarding aspects of these aspects rather than on practical components of
having a family member with ASD (Bayat, 2007; the interviews (e.g., appropriate wording of interview
Pakenham, Samios, & Sofronoff, 2005), ongoing questions).
grief responses (O’Brien, 2007), and management
of a range of unique intolerances, social misunder-
Participant recruitment
standings, and sudden mood changes exhibited by
their family member with ASD (Attwood, 2007; Effective recruitment strategies are another critical
Heiman & Berger, 2008; Macks & Reeve, 2007). component of all research studies, as recruitment of

Figure 1. Stages of qualitative research discussed in the paper.

80 E. K. Cridland et al.

an appropriate sample is a founding element to valid Data collection

research data (Minichiello et al., 1995). Tradition-
ally, recruitment of participants has relied on flyers, Appropriate interview settings
posters, and information in community newsletters In this field of research, semistructured interviews
(Minichiello et al., 1995). However, there may be are often conducted within the family home
various barriers to using traditional approaches (Mascha & Boucher, 2006). Benefits of this approach
when recruiting individuals with ASD given that include avoiding connotations of a clinical assess-
responding to such material requires a willingness ment, promoting familiarity for participants, and
to engage socially (usually by phone contact) with gaining a unique understanding of family dynamics
the researchers. Social discomfort inherent in such (Mascha & Boucher, 2006).
engagement may present as a barrier to some individ- The main challenge of conducting interviews within
uals with ASD signing up for the study. the family home is ensuring interviews are completed
There may also be barriers to using such approaches in an appropriate private space to maintain participant
when recruiting families of individuals with ASD. confidentiality (Mascha & Boucher, 2006). Partici-
First, families living with ASD may frequently pants may not recognise the importance of conducting
receive invitations to participate in research and, the interviews in a private space, particularly if they
given the impersonal nature of traditional recruitment indicate that their family is “open” with discussing
approaches, they may be less likely to read and all issues in front of each other (Dockett et al.,
respond to them (Krogh & Lindsay, 1999). Addition- 2009). If this is the case, it is important to discuss
ally, responding to a study flier is unlikely to be a the need for participant confidentiality. Other possible
priority for families living with ASD, given they are drawbacks of conducting interviews within the family
busy with the pressures of having a family member home include safety issues and practicalities of travel
with ASD in addition to the usual stressors of family for researchers (Minichiello et al., 1995).
life (Heiman & Berger, 2008; Macks & Reeve, 2007;
Pakenham et al., 2005). Further, there is the possi-
bility of recruiting a skewed sample when relying on
Practicalities of conducting interviews
these approaches as “high-functioning” families may
be more likely to respond (Kirkland, 2012). Numerous practical issues need to be considered
when conducting qualitative research with families
living with ASD. Such issues include organising
Obtaining informed and voluntary assent/consent
interviews at an appropriate time of day for partici-
Obtaining informed and voluntary consent is a pants, allowing ample time to travel to scheduled
necessary component of all research (Agre & interviews, conducting interviews at an appropriate
Rapkin, 2003). It ensures that individuals understand pace, and considering the most appropriate method
the study aims, the commitment of being involved in of recording the interview (e.g., scribing, voice-
the study, any potential risks and benefits of being recording, or video-recording). Consideration of
involved, and the expected outcomes of the research such issues during the planning stages of research
(Agre & Rapkin, 2003; van den Hoonaard, 2002). will help facilitate effective interviews. Additionally,
Further, informed consent is an ongoing process, it may be necessary to reflect on the processes in
rather than a time-limited event, and is best sought place during the data collection stages and make
at all stages of research (van den Hoonaard, 2002). appropriate changes if warranted.
Although parents/carers of individuals with ASD The skill base of interviewers is an important
are likely to be the family members who initially consideration in all qualitative research (Brinkmann,
show interest in the study, it is important to ensure 2007). Generally it is recommended that, at a
they do not provide consent on behalf of other minimum, interviewers are well acquainted with the
members of their family. Individuals with ASD interview guide and familiar with the interview
(Cocks, 2008) and children (e.g., NTD siblings; process (Brinkmann, 2007; Minichiello et al.,
Mishna et al., 2004; Potter & Hepburn, 2005) may 1995). Additionally, personality characteristics such
be particularly vulnerable to having their consent as patience, an open and empathetic attitude, and
provided for them (Cocks, 2008). Similarly, although an ability to listen are highly valued (Brinkmann,
parental/carer consent is generally the primary 2007). In the context of ASD research, it is also
requirement needed for children to be involved in important that researchers have a clear understand-
research, this should not replace obtaining assent ing of the characteristics of ASD and how these
from the individuals with ASD and children them- may present in participants (Cocks, 2008; Krogh &
selves (Dockett et al., 2009). Lindsay, 1999).
 ASD and qualitative research 81

Data analysis participants to read other family members’ tran-

scripts (i.e., participant confidentiality).
Accurate analysis and interpretation of data
In qualitative research, data analysis and interpret-
ation are overlapping, yet conceptually different,
processes. More specifically, qualitative analysis Dissemination of findings
involves the breaking down of data, whereas qualitat- Effective communication of research findings
ive interpretation illuminates a new way of under-
standing the data while remaining faithful to the The communication of qualitative research studies is
original data (van den Hoonaard, 2002). It is impor- traditionally confined to academic journal articles
tant to note that the analysis and interpretation stages and/or conference proceedings (Keen & Todres,
of qualitative research are influenced by all other 2007). This can often limit the application of research
stages of research, including preparation, data collec- findings in facilitating positive change for the lives of
tion, transcribing, and reading of transcripts (van den those affected by the research—in this case families
Hoonaard, 2002). living with ASD. Put another way, the dissemination
Issues to be considered during data analysis and of research findings to practice is often seen as a task
interpretation include considering transcribing as beyond the research process (Keen & Todres, 2007).
an integral component to the data analysis process, However, we recommend considering the dissemina-
reflecting on what participants discuss as well as tion of research findings as an integral component of
issues they do not discuss in interviews, and having the research process (see Figure 1).
multiple researchers involved in the analysis and The intended target audience of the research is
interpretation of data. the criteria on which dissemination strategies
should be based. Target audiences for research
focusing on individuals with ASD include families,
clinicians, health practitioners, teachers, policy-
Involving participants in data analysis makers, and so on. Therefore, dissemination strat-
Involving participants in data analysis is a relatively egies may include a range of approaches from
recent concept (Dockett et al., 2009). The rationale presenting to local ASD community groups to pre-
behind involving participants in data analysis is to senting to key stakeholders such as governments
ensure data are accurate (Dockett et al., 2009) and and other policymakers.
in line with the process of ongoing informed
consent (van den Hoonaard, 2002). There are
benefits of including participants in data analysis,
Providing feedback to participants
such as giving participants the opportunity to reflect
on their interviews and brainstorm “themes” emer- Communicating feedback to participants about the
ging from their interviews, and developing an results of the study is not considered a necessary
appreciation of the research process (Dockett et al., component of the research process. However, there
2009). Further, some participants may find such may be a range of benefits for doing so. First, feedback
involvement to be rewarding and/or therapeutic provides participants with findings of the study and
(Dockett et al., 2009). overall outcomes of the research (e.g., policy
One challenge of involving participants in data changes, publications, funding, etc.) that they may
analysis processes is the possibility that participants not otherwise have learned. Additionally, families
may reflect on certain things they had said (particu- living with ASD who participate in ASD research are
larly discussion of negative aspects of living with likely to have a genuine interest in the research
ASD) and express a desire for such aspects of the outcomes and therefore appreciate feedback. Feed-
interview to not be included in analysis (Barbour, back also acknowledges the significant commitment
2000). Another challenge may be participants of participating in research and may facilitate partici-
asking to read other family members’ transcripts, pants having positive experiences of being involved
particularly parents asking to read their children’s in qualitative research. Further, providing feedback
transcripts. Strategies to manage these challenges to participants may help consolidate research findings
include normalising experiences of discomfort when for the researcher and highlight the issues of impor-
reading transcripts, discussing the use of deidentified tance for families living with ASD (Keen & Todres,
data when reporting results, discussing the rights of 2007). Feedback about research findings and
participants to withdraw consent from the study, outcomes may occur periodically or at the conclusion
and discussing the rationale regarding not allowing of the research, depending on the nature of the project.
 82
E. K. Cridland et al.
Table 1. Recommendations

Research stage Recommendation General rationale Rationale for ASD research

1a. Preparation: Interview guide Include an introductory An introductory statement before commencing the interview An introductory statement may be particularly relevant for
development statement. can be helpful in reminding participants about the general individuals with ASD given their general preference for
content of the interview and the expected length of the preparedness (Solomon, Miller, Taylor, Hinshaw, & Carter,
interview. It may also facilitate a clear and concise 2012).
introduction to the interview process.
1b. Preparation: Interview guide Begin interviews with a A warm-up question will “set the scene” for the interview Initial nervousness may be of particular relevance when
development “warm-up” question. while also allowing participants to experience mastery and interviewing individuals with ASD due to the social and
relax into the interview. Example warm-up questions may communicative impairments associated with their condition
be “Tell me who is in your family” or “What activities do (Cridland, Caputi, Jones, & Magee, 2014; Solomon et al.,
you like doing with your family?” 2012).
1c. Preparation: Interview guide Provide a prelude to A prelude prepares participants for the upcoming question There are topics that individuals with ASD are likely to find
development challenging questions. and normalises any feelings of confusion or discomfort they challenging to talk about, such as discussing abstract
may have. An example of a prelude is, “Some people find concepts, social difficulties, emotions, perspective talking,
the next few questions difficult … ” etc. A prelude to challenging questions may help prepare
participants with ASD and their families for questions they
may find difficult.
1d. Preparation: Interview guide Structure interview guide Oscillating between challenging and less challenging topics Efficacious “easy” questions should either aim to foster
development to have challenging can help reduce the emotional and psychological demands mastery without beginning a lengthy conversation or relate
questions followed by of the interview on participants. in some way to the research topic (Minichiello et al., 1995).
easier topics. Easy questions for individuals with ASD about hobbies or
special interests are best avoided as they may lead to lengthy
conversations of little relevance to the focus of the study. It
may also be difficult to redirect participants back to the
interview.
1e. Preparation: Interview guide Develop single-faceted Single-faceted questions are easier for participants to Single-faceted questions suit the processing style of
development questions. understand and accurately interpret. Examples of single- participants with ASD and facilitate accurate interpretation
faceted questions are, “What are your favourite subjects at of the question (Cridland, Caputi, et al., 2014; Solomon
school?” and “How do you find homework?” This is et al., 2012).
opposed to a multifaceted format: “What are your favourite
subjects at school and how do you find homework?”
1f. Preparation: Interview guide Use both positively and Using positively and negatively framed questions facilitates It is recognised that living in a family with ASD involves both
development negatively framed discussion of both rewarding and challenging experiences, rewarding and challenging experiences, attitudes, and
questions. attitudes, and feelings, which contributes to a balanced feelings (Cridland, Jones, et al., 2014; Davis & Gavidia-
understanding of issues. Payne, 2009; Pakenham et al., 2005) and these issues need
investigation. In doing so, it may be important to
acknowledge that not all participants will share the range of
experiences. A prelude such as “Some people find positive
aspects of living with ASD. Have you experienced this?”
may help normalise discussion of challenging aspects of
living with ASD and encourage open discussion.
1g. Preparation: Interview guide Avoid using leading All research studies have aims and hypotheses; however, it is When responding to questions, individuals with ASD may be
development questions. important that interview questions do not elicit responses more likely to provide answers that are specific to the
solely in support of these hypotheses. An example of a question posed rather than using that question as a platform
leading question in a study focusing on the challenges of on which to elaborate, as NTD participants may. Therefore,
transitioning to high school would be, “What have been the continuing with the current example, if participants with
hardest parts of transitioning to high school?” An example ASD are asked about the challenges of high school they are
of a “neutral” question for investigation of this issue would likely to only discuss challenges even if they think there are
be, “What has been your experience of transitioning to high also positive aspects (Cridland, Caputi, et al., 2014).
school?”
1h. Preparation: Interview Pilot test the interview Pilot testing the interview guide is helpful in estimating the Pilot testing with an individual with ASD may be useful in
guide development guide. time needed to conduct the interview and promote identifying questions that may be confusing or open to
researcher familiarity with the interview guide. misinterpretation.
1i. Preparation: Participant Provide multiple methods Providing multiple methods of contacting the research team Some methods of contact (such as emails) may be less socially
recruitment of contact when gives participants flexibility in response options. Methods demanding on individuals with ASD, which may encourage
advertising the study. of contact may include text message services, email, or better response rates to the study. Additionally, options such
social media such as Facebook. as text messages may be less time demanding for family
members.
1j. Preparation: Participant Provide clear and detailed Providing participants with transparent and detailed Providing detailed study information when recruiting
recruitment information about the information about the study during recruitment may individuals with ASD may improve response rates. This is
study in recruitment encourage potential participants to respond to the study likely to be associated with the social and communicative
information. advertisement. Such information may include study aims, impairments inherent with ASD.
participant requirements, study timeframe (e.g.,
recruitment cut-off, data collection phases, etc.), and
expected benefits to participants.
1k. Preparation: Participant Employ some Employing some nontraditional recruitment approaches will Approaches that may be effective when recruiting families
recruitment nontraditional increase the number of potential participants that the study living with ASD include attending community ASD support
recruitment approaches. is advertised to. groups, outlining the study to school teachers so that they
can personally provide information to families of students
with ASD enrolled in their school, and snowballing from
recruited participants.
1l. Preparation: Participant Include information about Being involved in qualitative research has been found to be a The positive outcomes of being involved in qualitative research
recruitment the expected positive rewarding and enriching experience for participants for families living with ASD may include having an

ASD and qualitative research

outcomes of being (Dickson-Swift et al., 2007, 2008; Dockett et al., 2009; opportunity to discuss issues important to them, developing
involved in the study. Rager, 2005a, 2005b). Sharing this information with greater awareness and understanding of family members’
potential participants may increase their interest in being perspectives, and having an opportunity to “give back” to
involved in the study. the ASD community.
1m. Preparation: Obtaining Organise a “preliminary A preliminary meeting is useful for providing potential During this meeting it may be useful to ask what terminology a
informed and voluntary meeting” with potential participants with written and verbal information about the family uses to refer to the ASD diagnosis (e.g., autism,
assent/consent families to outline the study and requirements of participants (e.g., time Asperger’s, Aspie, etc.) and ensure that all relevant family
study. commitment). It is also useful for answering participant members have knowledge of the ASD diagnosis.
questions and ensuring that research eligibility criteria are
satisfied.

(Continued )

83
 84
Table 1. Continued

Research stage Recommendation General rationale Rationale for ASD research

E. K. Cridland et al.
1n. Preparation: Obtaining Obtain informed assent While written assent from child participants is not always Child participants in this research area include children with
informed and voluntary from child participants. necessary to fulfil ethical requirements of research (Agre & ASD and NTD siblings. If using assent forms for children
assent/consent Rapkin, 2003; van den Hoonaard, 2002), its inclusion is with ASD a “checklist” format may be appropriate as
important to ensure all participants are voluntarily participant requirements can be clearly outlined.
participating in the study.
1o. Preparation: Obtaining Remind participants of the Discussing research aims and participant commitments Ongoing consent is of particular relevance when involving
informed and voluntary research aims and regularly facilitates informed and voluntary assent/consent. individuals with ASD in research, as they may have
assent/consent participant commitments These discussions may involve providing participants with additional queries about the study which they may not raise
at each contact. a study information sheet and/or consent form and asking if unless overtly given the opportunity.
they would like to continue their involvement in the study.
1p. Preparation: Obtaining When conducting research Although parents/carers may be the family members who Individualised consent procedures are equally important in
informed and voluntary with families, ensure initially show interest in the study, it is important that they families living with ASD. Further, the literature highlights
assent/consent consent is obtained from do not provide consent on behalf of other members of their that individuals with ASD (Cocks, 2008) and children
individual family family. Additionally, we advise against requiring all family (e.g., NTD siblings; Mishna et al., 2004; Potter & Hepburn,
members. members to be involved in the study in order for a family to 2005) are particularly vulnerable subgroups in having their
be eligible for study participation. This flexibility will consent provided for them.
reduce the possibility of some family members feeling
pressured to provide consent and also reduce the number
of families deemed ineligible for the study.
1q. Preparation: Obtaining When conducting research Clearly outlining confidentiality issues ensures participants Participants may feel reluctant to speak openly about the
informed and voluntary with families, clearly are aware that information provided during interviews will challenging aspects of living with ASD if they are uncertain
assent/consent outline confidentiality not be shared with other family members (unless the study whether their interviews will be shared with other family
procedures. has an open nature). This awareness may encourage members. This may result in denial or minimisation of such
openness during the interviews and prevent participants topics.
asking about other family members’ responses.
2a. Data collection: Appropriate Ensure home interviews are Conducting home interviews in an appropriate private space, Conducting home interviews in a private space may facilitate
interview settings conducted in an such as a quiet living area or study, ensures confidentiality discussion of challenging issues, such as the difficulties of
appropriate private space. of information shared. Additionally, there will be fewer living in a family with ASD, which participants may
distractions for participants and a quiet environment for otherwise feel hindered to discuss openly if they felt family
clear recording (if used). members could overhear.
2b. Data collection: Appropriate Consider using an Alternative venues should be considered if there is no Alternative venues may need to be considered if interviews
interview settings alternative venue if home appropriate space within the family home (e.g., open-plan involve discussion of difficult topics associated with living
interviews are not living, strained family relationships, etc.), or if participants with ASD, and the researcher or participant feel it is more
appropriate. and/or the researcher do not feel comfortable or safe appropriate to discuss these outside the family home. Safety
conducting the interview within the home. Suitable venues issues of particular relevance when conducting interviews
include a quiet room in the researchers’ workplace or a with individuals with ASD involve unexpected responses or
bookable room in a community building, such as a library. behavioural reactions. For example, a participant may
become highly aroused if feeling confused about a question
or feeling uncomfortable about discussing a particular topic.
Strategies to promote a safe environment include
conducting the interviews with two researchers (a primary
researcher conducting the interview and a second to observe
or scribe), and/or ensuring a parent/carer is available but not
present.
2c. Data collection: Practicalities Schedule interviews at a Participants are more likely to be engaged in the interview The engagement of participants with ASD may be particularly
of conducting interviews preferred time for process if it is conducted at a time suitable for them. influenced by the timing. For example, mornings may be
participants. identified as a “good” time for an interview rather than
shortly after school or work when the participant may be
stressed or tired.
In order to conduct interviews at appropriate timeslots, Additionally, contacting participants with ASD before the
researchers may need to be flexible, which may include interview to check the arranged time is still appropriate is
conducting interviews outside of business hours (such as recommended. Rescheduling if needed is important, as
on weekends). conducting an interview with an individual with ASD who is
not in an appropriate frame of mind may result in tainted
responses (e.g., negatively framed responses or lack of
responses).
2d. Data collection: Practicalities Allow ample time when Apart from a general sign of courtesy, punctuality portrays Punctuality may be of particular relevance for interviews with
of conducting interviews travelling to interviews to a professional attitude toward the research. Arriving on individuals with ASD, as they may become agitated or upset
ensure punctuality. time is also a sign of respect for the participant’s time if the researcher is late.
commitment of being involved in the study.
2e. Data collection: Practicalities Take time to build rapport The importance of rapport building in qualitative research is Rapport building is essential in this research area given the
of conducting interviews with participants. well established (Brinkmann, 2007; van den Hoonaard, highly personal nature of research topics. Rapport with
2002; Lavis, 2010). However, in building rapport it is families living with ASD is likely to be established by
important to not just “do” rapport, where the researcher showing a genuine interest in their experiences, having an
engages in “faking friendship” to obtain knowledge from open attitude throughout the interview, and regarding the
the participant (Brinkmann, 2007). participant as the expert on the interview topic.
2f. Data collection: Practicalities Be aware of your rate of Asking interview questions in a measured, slow pace A slower pace of information presentation has been shown to
of conducting interviews speech when asking facilitates accurate interpretation. suit the processing style of individuals with ASD (Deruelle,
interview questions. Rondan, Gepner, & Fagot, 2006; Myles & Simpson, 1998;
Sachse et al., 2013).
Related to this, individuals with ASD may require a longer
length of time to provide an answer to interview questions
(Deruelle et al., 2006) and researchers should allow ample
time for a participant to respond before checking in that they
understood the question.
2g. Data collection: Practicalities Consider video-recording The benefit of using video recordings over voice recordings Video-recording interviews is an emerging methodological
of conducting interviews interviews. is the ability to analyse both verbal and visual information approach in this field (Meirsschaut, Roeyers, & Warreyn,

ASD and qualitative research

(e.g., facial expression, hand gestures, body movements, 2011; Mossman Steiner, 2011; Naber et al., 2008). The
etc.). benefits of this approach when interviewing participants
with ASD includes ability to analyse inconsistencies
between verbal responses and body language, individualised
uses of hand gestures, and use of eye contact.
2h. Data collection: Practicalities Leave recording device Participants may continue to speak after the last interview Participants often continue to share their experiences of living
of conducting interviews going until the interview question and useful information may be missed if not in a family with ASD after the interview.
has come to an absolute recorded.
conclusion.

(Continued)

85
Table 1. Continued

86
Research stage Recommendation General rationale Rationale for ASD research

3a. Data analysis: Accurate Transcribe interviews rather Transcribing has been considered an integral component Improving interview techniques as a result of transcribing may

E. K. Cridland et al.
analysis and interpretation than use scribes. of preliminary data analysis (van den Hoonaard, 2002). be particularly important when interviewing individuals
of data Transcribing is also an important way to improve interview with ASD, given the heightened importance of appropriate
techniques, such as the wording of questions, smooth wording of questions and suitable beginnings and
transitioning between topics, and beginning and conclusions of interviews with these individuals.
concluding the interview.
3b. Data analysis: Accurate Attend to issues that There is a focus on what a participant says in qualitative Participants may find it difficult or even taboo to discuss the
analysis and interpretation participants do not research. However, it is also important to reflect on issues challenges of living in a family with ASD. Similarly,
of data discuss. participants do not discuss. Participants may not discuss participants may wish to portray an image of resilience or
issues due to legitimate irrelevance of a topic, minimal positivity by focusing on the rewarding aspects of living in a
rapport with the researcher, or a desire to portray a certain family with ASD.
image during the interview.
3c. Data analysis: Accurate Have multiple researchers The credibility of qualitative data analysis is improved with Multiple coders are important when conducting research with
analysis and interpretation code the data. multiple researchers coding the data (Barnes, 1992; Braun families living with ASD because it is common for
of data & Clarke, 2006). The process of coding with multiple researchers in this field to have strong connections and
researchers includes a primary researcher conducting, investment with the research topic (Potter & Hepburn,
transcribing, and analysing the data, while other members 2005) and this background may interfere with objective data
of the research team read and independently code the data analysis. It is important that researchers are aware of their
for comparison (Braun & Clarke, 2006). potential for bias (Brinkmann, 2007; van den Hoonaard,
2002).
3d. Data analysis: Accurate Use analytical techniques In using analytical techniques that model the characteristics In researching families living with ASD there may be
analysis and interpretation that model the of family data researchers are able to gain insights into discrepant perceptions across family members (e.g., a
of data characteristics of family interpersonal relationships within the family, in addition to sibling reporting that they take on significant caregiving
data. the perceptions from individual family members. responsibilities, whereas parental reports indicate they do
not contribute enough). These issues are worthy of
investigation.
3e. Data analysis: Involving Include participants in data Including participants in data analysis may involve giving Including individuals with ASD and their families in data
participants in data analysis analysis. participants the opportunity to read their own transcripts analysis is in line with recommendations in the literature
(member checks), and encouraging participants to (Cocks, 2008; Dockett et al., 2009; Mishna et al., 2004).
brainstorm “themes” emerging from their interviews. In The benefits of including these participants in data analysis
addition, participants may be invited to read drafts of include giving participants the opportunity to reflect on their
reports and provide feedback to researchers. interviews, develop ownership of their data, and an
appreciation of the research process. Further, some
participants may find this process rewarding and
therapeutic.
4a. Dissemination of findings: Provide feedback about the The benefits of providing feedback to relevant individuals Relevant individuals and community groups for research
Effective communication of study’s findings to and community groups include sharing of research focusing on individuals with ASD may include local ASD
research findings relevant individuals and information and fostering networks, which may be community groups, ASD research centres, as well as
community groups. used in future research endeavours. mainstream and ASD-specific schools.
4b. Dissemination of findings: Consider target audience To facilitate effective communication of research findings, Target audiences for research focusing on individuals with
Effective communication of when choosing journals it is important to consider the intended target audience ASD may include families, clinicians, health practitioners,
research findings to publish research of the research when choosing journals to publish in rather teachers, policymakers, etc.
findings. than focusing on other research criteria such as the prestige
of the journal. Additionally, be prepared that the target
audience may change over the course of the research.
4c. Dissemination of findings: Consider presenting Academic journals and conferences have their place in When disseminating research findings to community
Effective communication of findings to community disseminating research findings; however, it may be members interested in ASD research it may be efficacious to
research findings members. efficacious to also pursue other avenues when present findings to local ASD community groups, forums,
disseminating findings to the broader community. Such etc. Additionally, when using mainstream media avenues, it
avenues may include community forums, radio stations, may be useful to advertise upcoming programs through local
and newspapers and/or television news programs. ASD community groups.
4d. Dissemination of findings: Provide participants with Information sheets are an appropriate method for providing When developing information sheets for individuals with
Providing feedback to written feedback about feedback to participants because they provide a succinct ASD, a structured format (i.e., use of headings, bullet
participants the study’s findings. outline of information, they are a tangible resource for points, etc.) may facilitate their understanding of the
participants to refer to, and they are economical and information.
practical.
The main drawback of information sheets is that they may be Additionally, it may be useful to provide information about
considered impersonal. local ASD community groups for participants who do not
access support services.
4e. Dissemination of findings: Provide participants with Group feedback sessions are useful for conveying in-depth A secondary benefit of group feedback sessions is an
Providing feedback to the opportunity to come findings and provide participants with an opportunity ask opportunity for participants to interact with other families
participants to a group feedback questions and provide comments. living with ASD. The social support provided by such
session. feedback sessions may be equally as important to
participants as receiving information about the outcomes of
the study.
Considerations when conducting feedback sessions for
families include running sessions at various times/dates to
cater for commitments such as work and after-school
activities, providing a venue with suitable child minding
facilities, and providing written information for
participants who are unable to attend.
4f. Dissemination of findings: Reflect on the impact of Reflections from the research team may include professional Qualitative research investigating the experiences of
Providing feedback to being involved in the and/or personal insights, and challenges and rewards of individuals with ASD and their families is likely to involve
participants study with participants. conducting the research. Additionally, reflections from the participants sharing a range of highly personal experiences,
research team acknowledge the significance of participants meaning that the reflections from the research team about
sharing their experiences for the research. their experiences of being involved in the research may be
particularly warranted.
5a. Researcher health: Importance Be involved in debriefing Debriefing sessions allow researchers to reflect on Researchers should not underestimate the emotional impact of

ASD and qualitative research

of self-care sessions to manage the challenging experiences, discuss ways of improving conducting interviews with individuals with ASD and their
emotional impact of research processes, and experience moral support. families. Reasons for this include listening to difficult
conducting qualitative Debriefing personnel may include research team members experiences, being with participants who are emotional or
research. and/or supervisors. Importantly, debriefing sessions should have behavioural outbursts, and providing a supportive and
not replace professional support, which may be necessary if nonjudgemental attitude throughout interviews.
researchers are seriously affected by the study.
5b. Researcher health: Importance Maintain a journal to Journal keeping has been shown to help manage the As outlined in section 5a., managing the emotional impact of
of self-care manage the emotional emotional impact of being involved in qualitative research conducting interviews with families living with ASD is an
impact of conducting and also promote reflective thinking that facilitates data important issue in this research area. Journal keeping may be
qualitative research. interpretation (Rager, 2005b). one strategy that assists with this.

(Continued)

87
 88
E. K. Cridland et al.
Table 1. Continued

Research stage Recommendation General rationale Rationale for ASD research

5c. Researcher health: Importance Space interviews apart to Organising interviews over an extended period may Adequately spaced interviews may be particularly warranted
of self-care manage the emotional contribute to researcher self-care as it reduces the intensity when conducting research with families living with ASD
impact of interviewing. of conducting the interviews and allows time for reflection given the range of emotionally laded topics that may be
between interviews. inherent to the research topic.
5d. Researcher health: Developing Be aware of the potential for Boundary confusion can occur when researchers or Being aware of the potential for boundary confusion may be
and maintaining healthy boundary confusions. participants become unclear around the researchers’ particularly important when conducting qualitative research
boundaries primary role (which is to collect data rather than being a with families living with ASD. First, children and
friend or clinician). The potential for boundary confusion individuals with ASD may find it difficult to understand the
is high in qualitative research due to the personal nature of unique role of a researcher, particularly when interviews are
research topics and the supportive method in which they conducted with a supportive nature and within the family
are conducted. home. Second, the emotionally laden topics that are often
Strategies to minimise boundary confusion include clearly inherent to this research area may lead participants to
outlining the roles of the researcher prior to interviews, become confused about the researchers’ role. Additionally,
having multiple researchers attend interviews, having researchers themselves may become confused about their
transcripts read by other researchers to monitor boundary role, particularly if they have a personal connection to the
maintenance, and ongoing debriefing sessions for research topic and/or professional roles other than a
researchers. researcher (e.g., counsellor, support worker, teacher, etc.).
5e. Researcher health: Developing Consider the differences in In most research, there is a power difference between It may be helpful to acknowledge the participants’ unique role
and maintaining healthy power in the roles of researcher and participant due to the researcher’s in-depth as “expert” regarding being an individual/family member
boundaries researchers and knowledge of the particular research area. However, in living with ASD. Such acknowledgement may facilitate
participants. qualitative research it is acknowledged, and even participants’ sense of mastery and highlight the value of
embraced, that participants are the expert in their own right sharing their experiences in the research.
as it is their personal experiences and opinions that are
under investigation (Brinkmann, 2007).

Note. ASD = autism spectrum disorder; NTD = neurotypically developing.

 ASD and qualitative research 89

Researcher health based on the literature and experiences from the

authors’ involvement in qualitative research focusing
Importance of self-care on families living with ASD.
Self-care involves a range of activities aimed at ensur-
ing the physical, emotional, and psychological well-
being of the researcher, such as exercise, social Conclusion
activities, hobbies, and travelling. The importance Conducting qualitative research with individuals with
of self-care for qualitative researchers investigating
ASD and their families is not easy, as highlighted by
emotionally laden topics is recognised but often over- the range of challenges and considerations discussed
looked (Rager, 2005a, 2005b; Stamm, 1999). throughout this manuscript. However, with these
Researcher self-care is imperative across all aspects
challenges also comes a multitude of rewards; predo-
of the research process. minantly, the opportunity to meet a range of different
In discussing the potential for emotional effects of people and hear their stories. Just as we attempt to do
conducting qualitative research with families living
justice to the significance of participants’ experiences
with ASD, it is not our intention to recommend that during the write-up of empirical papers, we aim to
researchers guard against all emotional reactions to honour the significance of our research practices by
research. On the contrary, we recognise the important
sharing our experiences with other researchers with
role of emotion in qualitative research (Brinkmann, this paper. The issues discussed contribute to exist-
2007; Rager, 2005a, 2005b), such as the ability to ing knowledge regarding conducting qualitative
empathetically consider the psychological world of
research with individuals with ASD and their families
participants. Rather, we recommend that researchers and promotes our understanding of ASD in general.
use strategies to manage the possible negative
emotional effects of conducting qualitative research.
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