Making space for the participant with complex communication (access) needs in social work research

Abstract

Despite the advancement of disability rights and augmentative and alternative communication, people with complex communication access needs (CCAN) are often absent from social work, and other qualitative study cohorts. After exploring the underlying reasons for this, the purpose of the study was to investigate successful exceptions of prior research in the field and to bring these together with the findings from a group of 10 participants with CCAN who reveal what they believe is needed to include people with CCAN in qualitative research. These insights are applied specifically to the context of social work research so as to advance an alignment between the ethos of the profession and inclusive practice.

Keywords

Ethics disability communication complex communication needs inclusive research augmentative and alternative communication

Introduction

The term ‘complex communication needs’ (CCN) is used to refer to individuals with limited or no use of functional spoken language to meet daily communication needs (Beukelman and Mirenda, 2013). People with CCN, like the rest of the community, are different in demography, interests, abilities and so forth; the underlying conditions associated with CCN are also diverse. Perry et al. (2004) explain that complex communication needs arise from developmental conditions such as cerebral palsy, autism, intellectual disability, and psychiatric and progressive neurological conditions such as multiple sclerosis, and can also be acquired through stroke or acquired brain injury. The presence of CCN has led to the formal development of augmentative and alternative communication (AAC), an area of research and clinical specialization within the broader field of speech-language pathology (Sigafoos et al., 2014). The focus of AAC intervention being to assist people with CCN (and their families) in the use of communication systems and devices (Pennington et al., 2007).

The Australian Bureau of Disability’s (2015) Survey of Disability, Ageing and Carers (SDAC), estimates that 1.2 million Australians have communication disability, ranging from those who can get their message across with assistance of a communication aid to those who cannot be understood at all. Despite the significant population there is little awareness of the day to day lives of people with CCN (Hodge, 2007) although some broad experiences of people with CCN are reported including the ongoing serious challenges to participating in educational, vocational, healthcare and community environments (Light and McNaughton, 2015). People with CCN are also at heightened risk of becoming a victim of crime, of suffering abuse, and neglect (Bornman and Bryen, 2013) with significant barriers to the criminal justice system (Togher et al., 2006).

Despite inroads into accessible research methods, the thoughts and insights of people with complex communication needs are often not collected and therefore not present amongst research findings (Gatherer and Kalsy, 2006; Hodge, 2007; Ison, 2009; Lloyd et al., 2006; Stafford, 2017). Without access to research participation a significant slice of insight and knowledge is missing from the field of sociology. Notions of access tend to be limited to physical barriers with communication barriers not understood in the same way as parking spaces, curb cuts and ramps (Collier et al., 2012). The notion of access aligns with the social model of disability, a model evolving from the influential work of former social work lecturer and disability activist, late Emeritus Professor Michael Oliver and others which views disability as a consequence of disabling conditions (Emerson et al., 2011; Oliver, 1990). Yet, unlike other forms of impairment, CCN appears to have not traversed the social model in the same way as others, such as physical disability and wheelchair access. In recognition of these environmental factors, the phrase complex communication ‘access’ needs (CCAN) is used, hereafter, in this paper.

Theoretical underpinnings of the study

As observed by Levin (2013), the field of AAC emerges from speech pathology historically entrenched, in what is commonly termed ‘the medical model’ of disability, where disability is attributed to the person with impairment(s). ‘The social model’, however, proposes a distinction between impairment and disability, with impairment being the bodily dimension, and disability, being what society makes of a person’s impairment (Goggin and Newell, 2004). The underlying model for disability used in the field of AAC today is the International Classification of Function (ICF) and the derived version for Children and Youth (ICF-CY). Transcending the binary of the medical and social models, it encompasses universal human experience, classification of body function, the performance of activities, participation in roles and situations, and environmental factors (Simeonsson et al., 2012). While the ‘ICF model’ includes notions of environmental influence, it was not considered ideal for the current study because although the field of AAC has grown extensively, the status and participation of people with CCAN has not, which will be outlined further on.

This study, founded in social work, considered material from disability theorists Elizabeth DePoy and Stephen French. They present the notion of disjuncture theory which positions disability as an interactive ill-fit of bodies and environments rooted in the design values that serve the creation of everyday objects (Depoy and Gilson, 2015). When considering barriers to communication, these design values might be interpreted to include research design but this is a grey area. Furthermore, there is the challenge of translating the disjunction between ill-fit bodies and spaces into the dynamism of complex communication, which to some degree echoes the spoken language breakdowns that can occur in interview settings. In this situation, the participant who does not speak the language of the researcher is not likely to be considered a subject of disjuncture. When AAC is considered from the perspective of skill, not disability, the view is different again as reflected by a group of international research academics who formed a website titled The Interest Group on The Intersection of Linguistic Research and Augmentative and Alternative Communication (2011).

We do not ask what they can teach us about disabled language, or about the language of disabled speakers. We ask what these very abled AAC-speakers can teach us about human language, because we do not consider them linguistically disabled (2015) available at http://www.linguist.org/AAC.html

Seen in this light, the disability could be perceived as located with the researcher who is unable to operate a communication device, for example, Talking Mats.¹

In line with the purpose of the study, and despite its lengthy pockets of critique, the investigation utilized the social model of disability as its theoretical underpinning. It examined theoretical barriers within the field of social work before turning to successful exceptions of exploratory and innovative research to unearth possibilities for moving forward in this area.

A commitment to evolving, innovative processes appears to be an important feature of communication inclusive research. As noted by DePoy and Gilson (2015), rather than moving with technology and innovation, social work has clung to outdated practices which are no longer relevant to the technological, global universe of the 21st century. This is concerning particularly in light of the extensive access technology inroads made in the field of AAC (Kent-Walsh and Binger, 2018; Light and McNaughton, 2015; Williams et al., 2008) and the reliance people, with CCAN, have upon these to participate in society.

The theoretical dilemma facing the study was the knowledge that while the field of AAC is achieving innovations and new intervention approaches, few inroads into the research participation of people with CCAN have emerged. At the same time, social work, while committed to the principles of justice and equity, has essentially ‘bailed out of’ the technical innovations required to help instil the qualities of its ethos for people with CCAN. Both fields, and their current dominant theoretical constructs of disability, have essentially left participant voices enclosed in an access van of inclusion without a driver.

Methodological gaps and CCAN

These methodological gaps span qualitative research with the literature offering other reasons for the omission of participants with CCAN. The time it takes to interview people with CCAN, accompanied by extraordinary exertion and fatigue on the part of the person using AAC is identified by some authors (Boggis, 2011; Castrodale and Crooks, 2010; Teachman and Gibson, 2018). Societal assumptions about bodily impairments such as speech which can lead researchers to generalised perceptions of the capacity of people with CCAN to participate ( Stafford, 2017).

Noted too are more general gaps in research ethical standards and methodological guidance (Cascella and Aliotta, 2014; Iacono, 2009). ‘Scant information is available to guide the selection and modification of methods for doing research with people with communication impairments’ (Teachman and Gibson, 2018). Resource restrictions and institutional pressures are highlighted. ‘When one is working with deadlines and tight budgets, it is not always possible to use emancipatory or even participatory approaches. One must generally be pragmatic’ (Castrodale and Crooks, 2010: 96).

Others point to the barriers erected by human research ethics committees in adopting an overtly protective stance towards ‘vulnerable’ participants underestimating the capacity of people with communication access barriers to participate (Forster and Iacono, 2008; Iacono, 2009; McDonald et al., 2016). The research ethics of the Australian Association of Social Workers (AASW) Code of Ethics (2010) offers little to dispel this claim. The AASW emphasises such qualities as valuing uniqueness and addressing inequities, but they appear misaligned with the section within the code dedicated to social work research. Herein the focus is limited to the protection of the vulnerable research participant and the ethical attainment of informed consent. With the focus upon ‘protecting the vulnerable’ there is little to guide the researcher to include people with significant disability (Stafford, 2017). Nor is the researcher compelled to consider, or adopt, practical expressions of valued ‘uniqueness’ or ‘justice’ so as to manifest the agency of potential research participants faced with participation barriers. There is an inherent tension between ‘protecting the vulnerable’ and enabling, what Nind (2014) refers to as, ‘inclusive research’. The ethical statement of inclusive research, alongside guidelines for identifying, engaging and benefiting from the competency and the legitimacy of the impaired research participant are missing from current social work research.

Social work parameters of communication inclusive research

The study sought social work literature to help illuminate field-specific factors which might explain impediments to the advancement of inclusive research. According to Selvamani and Rajan (2017), disability-related content in social work education is taught largely from a diagnostic perspective with elements of practice congruent with the norms, procedures and interdisciplinary arrangements encountered in health and rehabilitation services. This observance aligns with Rees (2012) who claims little has changed in the fundamental role of social work in relation to disabled people with the core role being to assess needs, provide supports and co-ordinate resources.

Issues of exclusion, denial of privileges and rights of people with disabilities would appear to be a natural fit for the field yet social work education affords little attention to specific issues (Laws et al., 2010). In conducting a literature review of communication impairment and social work, Calderwood and Degenhardt (2010) in their Canadian study, report only 17 articles all of which are dedicated to ‘service users’. Hearn et al. (2014) after investigating the experience of social work students with disability (in general) highlighted extensive gaps in the learning environment. These include the university environments in general, the low attention to the topic within social work research and support access problems such as negotiating field placements for students with disabilities. If there are practicing social workers with CCAN their experiences have not been published, at least at the time of the study. This is concerning in view of the awareness gaps. There is also the unmet need of capacity building beyond the field of AAC (McNaughton and Light, 2019) which might include the pre-service and in-service coursework of a broad range of professional fields including social work.

Alongside the rest of the community, social workers are subject to influence and social stereotypes and assumptions about people with disabilities which in turn can affect their practice (Hepworth et al., 2013; Rothman, 2018). Researchers, as everyday participants in wider society, are still shaped by the context and limitations of human perception. It appears that social work knowledge and investment in the lived experience of disability becomes a matter of chance rather than a matter of course.

When looking broadly across the field of disability, it is evident that social work research has advanced inclusive research practice yet it appears mostly limited to intellectual disability (ID) in a handful of works such as Bigby et al. (2013). Bigby and Frawley (2010) and in learning disabilities as described in Milner and Frawley (2018) and Nind (2017) or dementia as in Novek and Wilkinson (2017) People with severe, multiple disabilities are virtually missing from key theoretical and methodological discussions, and in empirical studies in the field (Mietola et al., 2017).

When communication barriers are referred to in studies of people with disabilities, they are often not a core focus. Furthermore, there are other problems when applying material from a specific field such as ID to that of CCAN. The two fields focus on entirely different impairments; different needs and experiences. Yet they appear hinged together on a platform of false assumptions such as – people who cannot speak or write have severely diminished intellectual capacity, and people with severe cognitive impairments cannot communicate. The bearing of such assumptions is evidenced in the campaign ‘Just because I don’t speak doesn’t mean I have nothing to say’ spearheaded by Scope UK (2015). In a research setting, these types of assumptions not only potentially influence the conceptual orientation of the researcher towards the participant but can also shape the study design, the types of resources brought into the study, the preparatory adjustments made as well as chosen methods and how they are applied and evaluated. Relying on methods used in impairment-specific fields is also problematic. The late Professor Stephen Hawking provides an unusual, but recognisable, example of a person with CCAN and how methodological studies from the field of ID may fall short in practice application.

There are examples of inclusive methodology in social work research. Cocks (2008) reports on the benefits of observational research in a study of child participants with communication impairment. However, with a focus upon the activity of young children an observational approach did not require an in-depth appreciation of the thoughts and ideas of the participants. The use of a communication tool called Talking Mats, features in the works of Germain (2004), Hill (2002) and Mitchell et al. (2009) has been successfully applied and evaluated (Bradshaw et al., 2018; Mackay and Murphy, 2017). Offered both as a physical mat, and in electronic application, Talking Mats comes with several subject-based sets of vocabulary that can be extended and modified in accordance with the capacity of the person(s) using the mat. Participants can make selections by pointing to an icon either by hand or by eye pointing which involves looking an item from a selected range long enough for the communication partner to identify the direction of the gaze and confirm the selected item (Beukelman and Mirenda, 2005). A downside of Talking Mats is highlighted by Bornman and Bryen (2013) who note vocabulary as selected by someone else or preselected, not spontaneously chosen by the person. This suggests a need to extend beyond simply relying upon a communication tool or explanations provided by others. In a study of children with disabilities, Mitchell et al. (2009) recommend Talking Mats but emphasise the importance of spending time learning each participant’s communication method(s) as well as placing value in moving beyond what is deemed acceptable and appropriate knowledge.

Photovoice, a participatory action research method has been successfully used in social work research across varying cohorts, including disability, as revealed in the works of Agarwal et al. (2015) and Jurkowski and Paul-Ward (2007). The method involves photographs, taken by participants, forming the basis of discussion (often in a group). When considering research in the field of ID, St John et al. (2018) describe Photovoice as suitable due to not being reliant upon an individual’s verbal communication or cognitive ability. However, few Photovoice studies provide detail about how the thoughts of participants with CCAN are captured in relation to the meaning(s) of the images. Seed (2016) suggests Photovoice can be effective in stimulating conversation however, there is little description of how discussion was facilitated in Seed’s study.

Study design

This article details a section of findings within a broader qualitative investigation of the meaning of home for people with CCAN. The broad study was designed using sensory and visual ethnographies and case study analysis. Due to the complexity of the methods being used, the intensity of the data being sought, and the relatively small population group, the cohort was limited to 10 participants.

For the purposes of evaluation and to inform ongoing projects, an open question was presented to a cohort of adult participants with CCAN at the end of the interview. What suggestions or ideas might you have to help (guide) researchers to interview people with CCAN? Participants were encouraged to answer the question in whatever way wished. In addition to using their own communication tools/AAC, communication supports were offered, such as the use of a Talking Mat, two versions of Pragmatic Organised Dynamic Display (PODD),² an iPad with communication apps, and access to the internet. Due to the reflective nature of the question, participants were offered the opportunity to provide their responses at a later stage through, for example, email. The interviews were videoed to ensure all communication was identified.

The study sought an understanding of the communication methods used by participants to answer the question alongside the actual recommendations made by the participant. Essentially, it was useful to identify whether the method(s) they were recommending for undertaking research with people with CCAN were the same as the methods they used to answer the question. If there was a close match between the recommendation and methods used, then it would provide some indication of success as related to the communication access aspect of the study design. Descriptive and comparative analyses were the planned methods for analysing participant responses. The study would also attempt to categorise the recommended strategies, ideas or methods, with known methodologies and report on findings.

Method

The researcher, with a close family member with CCAN, had completed training in the use of AAC including Talking Mats. After receiving ethics approval from the Human Research Ethics Committee of Flinders University, South Australia, 10 study participants were recruited with the support of disability agencies and an Australian AAC list-serve advertisement. Four female and six male participants ranging in age from 23 to 77 years were recruited; most were people with cerebral palsy, two had lost the capacity to speak and write due to stroke and one person with an unknown neurological condition. Three of the 10 participants were identified as having intellectual impairment, three indicated they had attended ‘special schools’, one had no known history of schooling and four had completed university degrees, two with higher degrees. Five reported previous participation in research projects. Four had access to a computer (two with assistance) and five could speak words, however these were usually laboured and very difficult to understand.

As anticipated from the literature, there was an absence of guidelines to support the interviewing of people with severe communication impairment, both generally, and specific to social work. Without these guidelines, the study sought to create a consent-to-research process to accommodate participants with severe communication impairment. Wherever possible, the AAC used by the participant was identified at the earliest point of contact with the participant.

Part of the consent phase criteria involved the researcher learning and demonstrating to the participant, the ability to identify and respond to the individual’s ‘yes’, ‘no’ and ‘neutral’ communication signals in ‘small-talk’ conversation. Only once the researcher had demonstrated, and was ‘signed-off’ by the participant as having a clear understanding of the participant’s ‘yes’ ‘no’ ‘neutral’ responses, were the rest of the consent questions presented to the potential participant.

Results

Each of the 10 participants possessed unique language in this area. For example, saying ‘yes’ included vocalisation such as humming; eye movements such as eyes looking up and left or eyes looking down and left at a ‘yes’ symbol on the tray of their wheelchair or gestures such as a thumbs up.

The following transcript extract provides an example of how ‘yes’ and ‘no’ communication was used in the interview (R = researcher, P = participant).

R. What do you think might help researchers to interview people with CCN? Do you have suggestions or ideas to help (guide) researchers?

P. Looking at researcher for a few moments. Participant turns head to the left and then looks down at the ground at the pile of photographs on the floor.

R. Are you saying use photographs?

P. Facial movement (yes).

R. These in particular or any photographs? (Lifts hands up – waves right) My right hand is “these in particular” the left (waves left) is “photographs in general”.

P. Gazes at right hand then at left.

R. Are you saying both?

P. Facial movement (yes)

R. Pictures and drawing too or just photographs. My right hand is “photographs mainly” the left is “any sort of image/drawing/picture”.

P. Gazes at right hand.

R. Ok I’m listing your suggestion as “use photographs” – is this right?

P. Facial movement (yes).

The responses were recorded in writing as well as video so as to ensure all communication was identified and what was perceived and written down by the researcher, during the interview, was congruent with the video material.

Responses from 7 of the 10 participants were collected; one participant chose not to answer the question, another was unable to respond due to fatigue, and the responses of one participant could not be clearly discerned from those of accompanying support persons and therefore this information was excluded. The methods the participants used to communicate their responses together with their actual answers to the question were compared and then aligned with existing methodologies. The analysis is outlined in Table 1 with the five columns from left to right indicating the following:

Table 1.

Analysis of responses and methods.

No.	Response to question (participant’s own words/message)	How answer was communicated	Method(s) used to provide answer	Method(s) identified in answer
1^a	‘Email, Skype, social media, face-to-face, face-to-face interviews, no detailed writing’.‘Relax’ (meaning researcher to relax)	Emailed word document received after interviewVerbal utterance (message to researcher to ‘relax’ so can better understand dysarthric speech)	NetnographyVerbal response	NetnographyVerbal response
2	‘Photos/pictures’ (use photos/pictures)	Eye-gaze ‘point’ to the pile of photographs with a vocalization (grunt).Affirmed by eye-gaze ‘point’ to ‘yes’ symbol on tray	Pointing (eye-gaze)	Photo elicitation
3^a	‘Him and her’ (indicating support worker and mother), photos	Eye-gaze ‘point’ to mother, support worker and the pile of photographs with a facial gesture ‘yes’	Pointing (eye-gaze)	Participant support Photo elicitation
4	‘Him’	Single spoken word, leaning over and touching the support worker	Verbal response	Verbal response
5	–	–	–	–
6	–	–	–	–
7^a	‘Spend a little time with the carer. A sound knowledge of the subject of aphasia and dyspraxia’.	Email received after interview – typed and sent by participant’s spouse who stated this was the participant’s message	Netnography	Researcher skills, knowledge and orientation
8^a	‘iPad, Google maps, Facebook’.	Finger pointed to the iPad and the applications on the desktop of the iPad	Pointing (hand/finger)	Netnography
9^a	‘Training’, ‘yes’, ‘researchers’, ‘this’	Single word utterances. Hand gesture towards Talking Mat and photographs	Verbal responsePointing (hand/finger)	Verbal responsePhoto elicitation
10	–	–	–	–

Participants who indicated they have participated in qualitative research studies in the past.

Column 1. Number allocated to the participant.

Column 2. Participant’s response to the question.

Column 3. How the response was communicated by the participant.

Column 4. Analysis of the participants’ method of response. Does the response align with a known research method or does it suggest something else?

Column 5. Analysis of the participants’ response to the question. Does the response align with a known method or suggest something else?

Participant responses were diverse, as were the methods used to convey them. Methods included the use of communication devices such apps from a personal iPad operated by hand, or an electronic eye-gaze application programmed into a personal computer and operated by the participants eye movements. More than half of the responses aligned with the methods participants used to convey their recommendations, such as, pointing at icons, using email or involving a supportive communication partner etc. The responses also aligned with previous methods employed to interview people with severe communication impairment such as photo elicitation and Talking Mats. For instance, most of the participants appeared familiar and comfortable with the use of visual icons. The photographs as well as images selected by participants from the internet, together with the use of Talking Mats, informed the study of the effective use of visual ethnography with the cohort.

The importance of including supportive communication partners was strongly conveyed. There were also notable differences in the language used by participants to describe this role; ‘support worker’ ‘carer’ ‘attendant’ and ‘friend’. Two of the participants highlighted the ‘support worker’ and ‘carer-partner’ as integral to the interview process. One participant used email to recommend researchers spending a little time with ‘carers’. The two participants studying towards higher degree qualifications did not wish to have a support person present in the interview; however, one called upon a support worker/attendant to assist with the translation of speech at various points in the interview. Three of the study groups consistently provided verbal answers in combination with varying levels of reliance upon personal AAC.

There were additional methods, suggested by participants, that were not anticipated, such as the use of social media and ‘Google Maps’. An investigation of literature identified an emerging field of ethnography from which these recommendations appeared to fit. Netnography is described as ‘a specific approach to conducting ethnographic research that uses the archival and communications functions of contemporary Internet‐based technologies such as mobile phones, tablets, and laptop computers’ (Kozinets et al., 2018). Ison (2009) and James (2007) outline the benefits of email interviews for both participant and researcher, highlighting such things as convenience, time and cost savings, and the opportunities to gain a longitudinal perspective and to clarify points over time. However, Ison (2009) also notes significant limitations such as barriers for people without access to a computer or an email account.

Overall, the collated participant responses formed four key themes:

The use of digital tools as research methods, for example email and social media.

Researcher qualities (background knowledge/training/awareness, ability to be comfortable/at ease, connecting effectively with a participant’s support network).

The involvement of a supportive communication partner.

Pictures, images and symbols are valuable research tools.

From the responses it is possible to affirm the value of using visual ethnography and to identify the possibilities offered by netnography. Social media, too, was indicated; however, despite inroads into the topic as related to function and outcomes of social media use of people with CCN (Grace et al., 2014), the role of social media as a research method, particularly for people with CCAN, had not been reported at the time of the study.

Researcher qualities were raised by participants such as encouraging the researcher to ‘relax’ in order to better understand the speech of the participant. The importance of researcher training in AAC, as well as the researcher having enough background knowledge about communication impairment were also highlighted.

Other factors arose from the results of the study. The time it took to receive responses from some of the participants as well as fatigue borne by participants, particularly as this was the last question of the interview, align with points raised by authors Boggis (2011), Castrodale and Crooks (2010) and Teachmann and Gibson (2018) about interviews needing longer time, as well as the fatigue that can be experienced by participants with CCAN in their efforts to provide answers.

Discussion

The study covered considerable ground with research and literature collectively revealing implications spanning the macro world of scientific disciplines through to the micro world of communication engagement with individual research participants. The theoretical position of the study was influenced by its purpose which was to find ways to assist social work researchers, and others, to include people with CCAN into social work cohorts on any topic, not limited to disability issues. It was specifically interested in notions of access and the environmental conditions from which research welcomes or excludes the participation of people with CCAN. The social model, in helping to lay a neglected issue on the table, points to environmental change, in this case, researchers compelled to make adaptations, not only on the basis of inclusion, but with organic, attitudinal and behaviour responses rooted in an evolving world of advancing technology and experimental research.

The two aspects of the study are inter-related but different from one another. One is imbedded in theory and discipline jurisprudence, the other reveals practical insights into inclusive research approaches for people with CCAN. Both areas need to evolve simultaneously with implications for social work in forging a commitment to advancing its knowledge and evolving research technologies. Goggin (2014) emphasises the importance of access technologies in research. He refers to the creative explosion of digital technology use by people with disabilities, but also points to implications outside the field of research such as the United Nations Convention of the Rights of Persons with Disabilities (CRPD) to account for, and address, aspects of technologies as well as the orientation of designers and providers around ensuring accessibility. This might entail expanding the United Nations CRPD, article 9 (Access) to include research participation, and the requirement of access technologies to to be available broadly across research practice.

As seen in the study, some participants could use their hands to point or gesture, others could operate a computer through the calibration of their eyes using advanced technology, some had no access to a computer, some required a partner to assist in the selection of icons from which they could point to symbols to convey meaning, some used speech to convey their messages. Interviews took more time than what might be expected with participants without CCAN. The fatigue expressed by participants, did not mean they were unsuitable participants, it meant that some participants could not be interviewed in one session, others required frequent rest breaks. Research in this area requires planning and problem solving to ensure the comfort of the individual.

The study required the researcher to be willing to extend herself beyond the familiar boundaries of communication. As outlined by Sunderland et al. (2012), ‘As researchers, we must continuously ask: who gets to speak and how? To what extent are we limiting this interaction to match our own abilities as researchers?’ (p. 54). With this comes an invitation for sociologists to extend their skill repertoire to include such things as knowledge and use of AAC as well as good communication partnering, and a willingness to expand into alternative areas of research. Extending the notion of partnership even further is a point raised by Pullin et al. (2017). ‘Fully inclusive research implies not just the participation of people who use AAC but also their shared ownership of this research’. (p. 146)

The outcomes of this study reveal the need for social work, and qualitative research in general, to examine ethos and practices so as to forge better corridors of communication access. This entails the training and education of social workers and the support structures afforded to them within research, and in professional practice. The social work researcher needs to be prepared for the 1.2 per cent of the population (Australia) that has the right to not only claim their space within a research cohort, but to also receive services from, or employment within, the field of social work. This requires flexibility and a deeper understanding of diversity which insists upon a workable awareness and knowledge of people with CCAN including their unique needs. In doing this, researchers play a pivotal role in the manifestation of awareness and understanding in this neglected area.

This study identified the value in embracing alternative research methodologies such as visual ethnography and netnography, and adapting these to support the communicative strengths of diverse participants. It also highlighted the importance of sensitively involving, and valuing, support (person(s) chosen by participant to assist in the interview) with the aim of facilitating the best possible first-person insights of participants. Finally, and perhaps, most importantly, the study highlights the attitudinal gateway to communication inclusive research. The challenge being to encourage social work and other fields to view CCAN from the perspective of access; the right to communication access, the right to expect communicative adaptations in the research environment, and the right to be heard and understood.

There were shortfalls in the study including the small size of the cohort and the need for more extensive investigation with diverse groups of people. The study had not factored in how participants with vision impairment might access visual ethnography and netnography. The fundamental strengths of these ethnographies rely upon their availability to the research participant. The pioneering of new methods that can take into consideration those who are visually impaired and without computer or technology access is a critical part of an ongoing journey into inclusive research.

The study was unable to report on other, related, challenges such as how to build capacity in AAC as acknowledged by McNaughton and Light (2019) as well as a commitment to advancing accessible technologies in social work research and practice. These are broad responsibilities which, although affecting research values, fall outside the scope of research practice.

Conclusion

Making space for the research participant with CCAN in social work research relies upon a range of progressive shifts. The first of these is the reconceptualising of inclusive research to include CCAN; extending the meaning of inclusion to embrace communication access in the social work research environment. Alongside this is the disruption to the underlying concept of people ‘who can’ and ‘cannot’ communicate. Emerging from this study is the knowledge that people, including those with profound intellectual impairments, can communicate and participate in sociological research. If there is any cause to implement the concept of ‘cannot communicate’ it is perhaps best directed to that of researchers in relation to their use, or not, of AAC.

The knowledge gained from participants offers an invitation for researchers to extend their skill base in such a way as to transcend normative communication. It requires a willingness to question the status quo; to expand one’s knowledge and use of AAC, to spend additional time with some participants, to learn new communication partnering skills as well as a willingness to move beyond traditional fields of research to include new methodologies such as visual ethnography, netnography and sensory ethnography, to mix methods and offer participants choice in responding to a question and to become familiar with generic communication tools such as Talking Mats.

Social work research is embedded in the communication environment but this space must also embrace justice. The ethos of the profession is pitched to help lead qualitative research through the neglected gateway of communication inclusive research but first it must address the disabling conditions within its own science. This will likely entail the forming of solid communication bridges between researchers and participants, adapting research methods to support communication access options, and developing ethical guidelines which reinforce these practices. Without these supports in place, the social work researcher is impeded in the effort to overcome barriers, and is bound to the continuation of scientific papers which not only fail to represent the knowledge and input of people with CCAN, but do little to support the access of people with CCAN and their connection to social work more broadly.

Footnotes

Acknowledgements

Heartfelt gratitude is extended to the participants of this research for their generosity, patience and enthusiasm for the study. Thank you to Associate Professor Kathy Arthurson and Associate Professor Lorna Hallahan from Flinders University for your wisdom and humanity and to the Southgate Institute for Health, Society and Equity, Flinders University. Thank you to the journal reviewers who challenged and encouraged this work in equal measure. Finally, gratitude is extended to Max Saul – the best of teachers.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Notes

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