Key considerations when interviewing individuals with expressive language difficulties

Abstract

Qualitative research comes with its fair share of challenges; however, those challenges are often amplified when interviewing individuals with intellectual and developmental disabilities. A research project, Friendly Housemates, was conducted where people with intellectual and developmental disabilities were matched with post-secondary students to live together as housemates. Drawing on experience gleaned from interviews conducted for the study and earlier research, recommendations are made for collecting, analyzing, and reporting data from participants who are quiet or have expressive language difficulties. These practices will help to ensure that the voices that are so often relegated to the fringes are brought to the disability research discourse.

Keywords

Intellectual disability developmental disability communication disorder interviews best practices

The purpose of this paper is to describe challenges, experiences, and insights we gained regarding interviewing people with an intellectual or developmental disability who also have expressive language problems. Developmental Service Worker faculty and researchers from a community college and staff from a large urban Canadian social service agency partnered to launch Friendly Housemates, a research study that matched post-secondary students with individuals with intellectual and developmental disabilities such as autism and Down syndrome to live together as roommates (Atack et al., 2019). The primary purpose of the project was to determine the ways in which shared living might lead to positive relationship building and bolster semi-independent living for people with disabilities. Through careful consideration of our positionality within the research relationship, critical analysis of our research, and purposeful attempts to facilitate storytelling on the part of the housemates, we attempted to create a research environment that reflected our position of putting the needs of the housemates at the forefront.

A pilot project was conducted to determine the feasibility of recruitment, implementation, and support processes and to test the data collection plan. It quickly became apparent when interviewing participants who were labeled with intellectual or developmental disabilities who also had expressive language difficulties that the techniques and considerations required by the interviewer surpassed those required in more typical interview situations. The structure of the interviews and the challenges faced by the participants meant that accessing information from their perspectives and hearing their part of the story often proved quite challenging and those findings informed the larger, subsequent study.

The full study was launched and was conducted using a qualitative Appreciative Inquiry approach (Whitney et al., 2003), where semi-structured interviews were used to explore the participants’ experiences of shared living. This approach takes a capacity-building, asset-based, empowerment stance. Research participants are viewed as equal partners in the research process; this approach is founded on the philosophy and values of ownership, collaboration, access, and control. This approach was developed for research with Indigenous populations and is now widely used when conducting research with people with disabilities in a critical disability studies context (National Aboriginal Health Organization, 2005).

The data collection plan was structured so that an interviewer, skilled in communicating with people with intellectual and developmental disabilities, met with each member of the household cluster (the person with a disability (referred to as ‘the housemate’), their parent, their case manager, and the student) at 6-month intervals, in some cases up to 2 years. The interviews were taped and transcribed. The purpose of the interviews was to explore participants’ experiences and to chart the progress being made by the household members in terms of independent living, learning opportunities, and relationship development. The study was approved by the local Research Ethics Board and informed consent was sought from all research participants using guidelines developed by Dalton and McVilly (2004).

Cambridge and Forrester-Jones (2003) in their extensive study with people with intellectual disabilities identified four different stages or project components to consider when interviewing people with intellectual and developmental disabilities: planning, location and exchange, conducting, and design. Their model served as the framework for this paper.

Planning interviews

Reflexivity

The process of ensuring that individuals with intellectual disabilities and their experiences are honored and respected begins in the planning stage, well in advance of the first interview. It begins with the researchers, their commitment to equitable research practices, and their ability to critically analyze not only the social position of the participants, but their own positionality as well.

The overarching viewpoint regarding disability has traditionally been from the medical perspective (Withers, 2012) where disability is viewed as intrinsic and as something that needs to be fixed. Conversely, the social model of disability differentiates impairment (a functional difference in one or more areas of the body, such as a spinal malformation or blindness) from disability, which is viewed as the effect of social and structural oppression that results in impaired individuals facing barriers that prevent their active participation in their communities and beyond (Oliver, 1996). The social model is not a deficit framework: it does not assume that if a disabled individual is not completing a task or participating in an endeavor in a way that is typical of their peers there is a lack on the part of the individual. Instead, the social model provides an opportunity to see how the social environment is creating disability by enacting barriers that prevent that individual’s full participation. These barriers can permeate every aspect of disabled people’s lives, including interactions with researchers, who are well intentioned but who nonetheless may harbor their own prejudices.

In order to analyze the lived experience of individuals with disabilities and counteract the paternalistic notions that permeate some empirical research, researchers must reflexively examine their own positionality and prejudices in order to better understand the ideas and influences that they are bringing to their research (Berger, 2015). Reflexivity is particularly important in researching areas of oppression as it is one way in which researchers can consciously attempt to mitigate the effects of the distinct power dynamic at play which sees the researcher receiving significantly greater benefits than the researched (Ashby, 2011; Vernon, 1997). By taking a good hard look at where we are coming from as researchers, and as outsiders to the world of intellectual disability, we can consciously work to counterbalance any biases that we have, and work to ensure that we are not colluding with established, damaging ideas about individuals with intellectual disabilities as perpetual children or objects of pity.

Combined with the ongoing work of reflexivity, there are several ways in which researchers who are working with individuals with intellectual disabilities can foster an environment that is comfortable and supportive and that assists individuals in being able to tell their own stories. Even something as simple as understanding that these individuals have stories to tell, and that it is worth taking the time to hear them even when it is hard work, can make a significant difference (Gillies, 2000). Unfortunately, it appears that even in the body of research regarding disability, one is hard pressed to find work that uses appropriate qualitative research techniques with individuals with expressive language difficulties (Paterson and Scott-Findlay, 2002; Thorne and Paterson, 2000). Researchers who do not make the effort to overcome barriers and assist these individuals in their communication continue to conspire with the overarching ethos that dictates that these individuals are not worth listening to (Lloyd et al., 2006).

Access

One of the barriers that we faced with some families in Friendly Housemates was access to the housemates themselves, which limited data collection from a small number of participants. Researchers often have to go through gatekeepers when conducting research with people with intellectual or developmental disabilities (Nind, 2008). These gatekeepers make decisions on behalf of the individual, and sometimes do so without asking the individual themselves about whether or not they are interested in participating in the study. We tried to overcome resistance in Friendly Housemates with the researcher gently explaining to concerned parents the benefits their adult child might gain by participating; however, in one instance, the parents continued to decline. They were concerned about potential stress on the individual despite assurances that the interviewer and parents could work together to mitigate any stress, and that the individual would be able to stop speaking with the researcher at any time. This is a complex situation, however, and research has recently emerged (McDonald et al., 2017) that suggests that people with intellectual disabilities and other stakeholders agree that ‘someone else’ making the research participation decision, hindering research access, is harmful. Hall et al. (2017) recommend contacting gatekeepers well in advance to explain the study and answer questions, making clear to them that the process and interview guide can be adapted as needed.

Location and exchange

Cambridge and Forrester-Jones (2003) described the importance of interview location and exchange or building rapport. When individuals and their families are amenable to participating in research interviews, studies have shown that the importance of building relationship and trust with the individual is very important (Wilkenfeld, 2015). Building rapport not only results in greater comfort on the part of the interviewee, leading to more revealing discussions (Wilkenfeld, 2015), but also allows the researcher to gain a better understanding of the individual, their communication style, and the best ways to adjust questions in order to facilitate the discussion (Lloyd et al., 2006). Booth and Booth (1996) recommend that interviews should take place over several sessions and ideally be supplemented by time shared between the researcher and respondent in other settings or circumstances. With respect to Friendly Housemates, all interviews were conducted in a place identified as most comfortable for the housemates with intellectual or developmental disability: the shared home. This not only allowed the participants to feel psychologically comfortable, but offered insight into the housemates’ lives and the shared relationship. For example, one housemate would always be watching wrestling when the interviewer arrived—this brought relaxed conversations about favorite wrestlers and the history of wrestling, which were not only interesting for the researcher, but also allowed the housemate to demonstrate mastery over a subject and to become more used to speaking with the interviewer. Further, when the participants were amenable, the interviewer met with the housemate for one or more advance introductory meetings. In one case, the interviewer visited the housemate on four occasions before conducting the interviews, simply to increase rapport. An important consideration when undertaking this technique is that because these individuals often have few relationships that are not family or staff based, and because the interviews take place at home, the line between researcher and friend can quickly become murky in the eyes of the interviewee (Nind, 2008). Researchers must be particularly careful not to lead these individuals into believing that they are friends as they are more prone to coercion than other participants (Coons and Watson, 2013).

Conducting interviews

Communication challenges

Booth and Booth (1996), in their analysis of the lived experience of a man with intellectual disability, painted the following picture:

Danny Avebury was chronically short of words. Would only speak when spoken to and then as little as possible. During 3 interviews running almost 2.5h of recorded conversation he uttered only 10 complete sentences, including 4 ‘don’t know’s and a ‘can’t remember.’ His longest sentence was made up of five words. Otherwise, his responses to three out of every four questions consisted of a single word only. (p.60)

And yet, from this minimal articulation, they wove a tapestry of Danny’s life—his likes, dislikes, concerns, and salient experiences. Danny, with his propensity toward silence, mirrors the majority of the individuals in Friendly Housemates, who often offered few words or articulations during interviews.

Interviewing individuals with intellectual disabilities can be challenging (Coons and Watson, 2013) and requires greater thoughtfulness and patience on the part of the researcher. To sum it up succinctly, ‘the interview process is by no means easy’ (McVilly, 1995: 138). Booth and Booth (1996) identified the common interview concerns as inarticulateness, unresponsiveness, a concrete frame of reference, and difficulties with the concept of time. Before addressing any of these challenges, it is important to enter the research with a presumption of credibility on the part of the individual with intellectual disability (Goodley, 1999; Mactavish et al., 2011), and move forward from there.

Inarticulateness

Inarticulateness, or the inability to communicate fluently in words, can be viewed as:

[Going beyond] mere shyness, anxiety, or reserve. It originates with restricted language skills but is generally overlaid by other factors including a lack of self-esteem, learned habits of compliance, social isolation or loneliness, and the experience of oppression. (Booth and Booth, 1996: 56)

In this description, inarticulateness does not focus on grammar, pronunciation, articulation, or rates of speech, as noted elsewhere (Dykens et al., 2000), but is firmly rooted in experiences of marginalization, inviting the researcher to consider social position and personal history in their analysis of the individual’s interactions and communication. It is therefore once again important to continue with the work of unpacking power and relationship throughout this stage of interviewing, and beyond.

To address inarticulateness, earlier researchers suggested that augmentative and alternative communication approaches, such as sign language, picture stories, or symbols, may provide a bridge between the thoughts and articulations of respondents (Summers and Pittman, 2004). Interviewing may be augmented with participant observation or videotaping (Ashby, 2011; Mactavish et al., 2000) although it makes the research more demanding from an ethics and analysis perspective.

Researchers also advocate for the technique of using ‘successive approximations’, where the researcher slowly gathers information using a series of yes/no questions, taking care to not lead the conversation but instead, following the lead of the individual (Biklen and Mosely, 1988; Booth and Booth, 1996). This understanding of the need to follow rather than lead is of particular importance with respect to interviewing individuals with intellectual disabilities, who have been shown to be particularly vulnerable to acquiescence and coercion (Caldwell, 2014; Wilkenfeld, 2015).

With respect to Friendly Housemates, the primary way we addressed inarticulateness was to have a close family member present during the interviews to elaborate on or interpret the meanings of the individual’s articulations, a technique recommended by Nind (2008). This technique must be used cautiously as the supporter’s personal biases may color the way that the supporter rearticulates the individual’s words (Lewellyn, 2009), reflecting his or her ideas rather than the ideas of the individuals themselves (Lloyd et al., 2006). In order to mitigate this bias, Caldwell (2014) recommends the use of a dyadic interviewing technique, where the individual chooses their own support person, and the individual’s voice is strongly prioritized in the reporting stage, a technique that we used in Friendly Housemates with some success. We also used a technique recommended by Wilkenfeld (2015) where the researcher constantly summarizes information, subtly changes wording and re-poses the question, and checks back with individuals to make sure that they are not leading or misinterpreting. We also used field notes; observations of an individual’s responses, actions, and mood; and interactions between the housemates, which were helpful.

Regardless of the technique used, these means of using supportive or proxy respondents both pose a risk for continued marginalization of the individual as the potential for prioritizing supporter voices over the individual’s voice is ever present. Further, these techniques can also result in challenges in reporting, discussed later in this paper.

Unresponsiveness

Unresponsiveness can be viewed as an inability, or lack of desire, to answer questions. Researchers have noted that open-ended interview questions frequently result in either no information or very little information being gathered in these situations (Lloyd et al., 2006). Finlay and Lyons (2001) offer a more nuanced understanding, indicating that open-ended questions can be answered provided that they do not contain complex concepts.

Closed-ended questions may be used with some success. Some researchers focus on the use of yes/no style questions (Booth and Booth, 1996), while others indicate that either/or style questions are not only more readily answered but may result in more valid responses when triangulated with supporter responses (Sigelman et al., 1981). The problem, however, with closed-ended questions is that they do not allow individuals to take the conversation where they want it to go, which is one of the purposes of qualitative research. Therefore, there is an even greater risk that the data collected will be shaped by the questions being asked, rather than the story that the individual wants to tell (Ashby, 2011).With respect to Friendly Housemates, the interviewer used both open- and closed-ended techniques, altering the interview guide when needed, depending on the individual being interviewed, enacting Coons and Watson’s (2013) directive that interviewers must be flexible when working with individuals with expressive language difficulties. The interviewer altered the order of the questions depending on the housemates’ interest or ease in answering, using the ‘successive approximations’ technique of Biklen and Moseley (1998), as described above, and took frequent breaks to discuss issues that were more to the individual’s liking in between questions.

It is important to keep in mind that unresponsiveness may also indicate a lack of willingness to participate, rather than a lack of ability to respond. Booth and Booth (1996) urged researchers to read into silences, some of which reflect a lack of desire to answer, and others which beg to be broken. This requires nuanced understanding on the part of the interviewer and may only be feasible where the interviewer has taken the time to build rapport with the individual over multiple sessions. Wilkenfeld (2015) also noted that interviewers should attend to nonverbal cues both in these contexts and throughout the interview process, as body language, eye contact, and behavior are critical components of communication in interviews with individuals with expressive language difficulties. Field notes, used in our project, were helpful in this respect.

Frame of reference and the concept of time

Concrete frames of reference and challenges with the concept of time go hand in hand and are often referenced as important to keep in mind when conducting interviews with people with intellectual disabilities (Booth and Booth, 1996; Mactavish et al., 2000; McVilly, 1995). Booth and Booth (1996) pointed out that many people with intellectual disabilities often do not have access to the same markers of time (such as graduations, passing driver’s tests, getting married) that are available to many nondisabled individuals. Without these markers of the passage of time, it can be difficult for individuals to create an internal timeline of events that may be pertinent for research.

The challenge in the context of Friendly Housemates was that the interview guide questions required some flexible thought and an understanding of time. At the beginning of the relationship, the questions centered around the future—what individuals thought it will be like to live with their roommate, what they would like to do and learn. Later, we asked individuals to reflect upon their time spent together, which was challenging for individuals who are very much centered within the present moment. To address this challenge, we revised the questions, shortened them, and made them more focused on the present for some individuals. Parents who were present often helped to jog the housemate’s memory by saying, ‘Remember the time. . ..’

Analysis and reporting

In addition to the four stages identified by Cambridge and Forrester (2003) the analysis and reporting stages can present challenges in studies with people with intellectual or developmental disabilities (Ashby, 2011). In addition to interviewing the housemates with intellectual disabilities, researchers with the Friendly Housemates project also interviewed each household’s student, family members, and support staff in order to gain a more complete picture of the experiences and impact of the Friendly Housemates relationship. The amount of data collected from each individual ranged widely from hours of speech in the context of parents or students, to just a few short words or sentences from some of the housemates. This imbalance regarding the volume of data collected increases the risk of misinterpreting individuals’ experiences (Ashby, 2011). As such, it was important that the researchers kept the needs, interests, and feedback from the disabled individuals at the forefront throughout the analysis process in order to ensure that their voices did not get lost.

Data analysis begins with the transcription process and during the project, we saw how even this process can be complicated, where the transcriptionist attributed recorded words to the housemate, when actually, it was an amalgamation of information given not only by the housemate, but also some prompting by that individual’s parent. One transcript read:

So Eric, what kind of special things do you do with Kate that you wouldn’t do with your other workers. Or what things are special because you do them with Kate?

Eric:

We like to walk, and do karaoke, and go for swims in the pool.

Here it can be tempting to analyze this as is, and to then report these words as belonging to Eric, the housemate. When listening to the tape, however, we found that while this information is shared, it is not stated in this manner, or vocalized completely by Eric; it is presented largely by his mother. This leads to confusion in reporting, where it can be tempting for researchers to provide direct quotes on the part of the individual in an effort to prioritize their voice. In our project, we worked closely with the transcriptionist and cross checked each transcript while listening to the interview.

With respect to data analysis, to stay ‘true’ to the data, coding and theme development were done by two researchers, one of whom had conducted the interviews and knew participants well. Regarding reporting, Booth and Booth (1996) advise that poor self-expression should not inhibit storytelling but it does require attention when turned into text. It is important to note that when analyzing the interview data from persons with intellectual disabilities, we triangulated that data with the data collected from all participants (students, family, and staff) and from field notes of observations made in the home regarding housemates and students. Grove et al. (1999) refers to this as a ‘continuous process model’ where meaning and the validity of participant statements are interpreted in light of the context in which the communication takes place, an invaluable approach to validating communication when conducting research with this population. When reporting results from the Friendly Housemates project we gave priority to verbatim quotes from the participants with intellectual disability; we ensured when possible their voice was presented in each theme that was generated from the data. Earlier studies suggest that one of the best ways to counter the risk of researcher or supporter bias unduly influencing research interpretation and reporting is simply to check back in with the respondent with intellectual disabilities to see whether the story as analyzed and told is that which makes sense to them (Coons and Watson, 2013; Nind, 2008). Participants in our study were invited to review their transcripts and comment. Major themes were shared at a stakeholder meeting and these were validated by participants.

Conclusion

The privilege we were given to conduct the Friendly Housemates project resulted in a tremendous learning experience and a sense of obligation to share lessons learned directly from participants and from the literature regarding best practices in interviews. These learnings suggest that there are multiple techniques that can be used to improve the quality of data collected when participants are not expressive. Foremost however, comes a commitment to wanting to capture the participant’s voice, the techniques are secondary to that overriding principle. We hope that our experiences in the Friendly Housemates project add to the body of knowledge regarding interviewing these individuals and hope this paper provides a jumping-off point for further discussion regarding how researchers approach disabled individuals as research partners and participants.

Footnotes

Acknowledgements

We would like to thank all of the families and individuals who participated in the Friendly Housemates project. We would also like to thank the entire Friendly Housemates team: Marilyn Herie, Dianne McCauley, Donald Easson, Matthew Poirier, Frances MacNeil, Michelle Grimley, Rahul Malik, and Natalie Oakwell-Morgan. Finally, thanks to the Social Sciences and Humanities Research Council (SSHRC-CRSH) for funding this important and meaningful work (grant # 890-2015-1012).

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This journal article draws on research supported by the Social Sciences and Humanities Research Council. Friendly Housemates was funded through the Partnership Development Grants - community and college social innovation fund, file number 890-2015-1012.

ORCID iD

Judy Verseghy

Author biographies

Judy Verseghy holds a Master’s degree in Critical Disability Studies from York University. Her work primarily centers around disability, motherhood, and fatness, and the is co-editor of the forthcoming book Heavy Burdens: Stories of Motherhood and Fatness, set to release in 2018.

Lynda Atack is a senior researcher at Centennial College, Toronto, Ontario. She has conducted many qualitative studies funded by provincial and national funding agencies, including the Office of Learning Technologies, Health Canada, CANARIE, the Ontario Hospital Association, Inukshuk, SSHRC and the Canadian Council on Learning.

Janet Maher holds a PhD in Sociology, and has over 30 years’ experience in applied social and evaluation research for educational institutions and community organizations. Her work primarily focuses on planning, health, social services, women’s rights, corrections, and international development.

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