Giving voice by doing with not doing through : Collaborating with tactile sign language interpreters in interpretative phenomenological analysis research involving older deafblind people

Abstract

There is a dearth of qualitative research into deafblind people’s experiences, impoverishing our understanding of the phenomenon and contributing to deafblind people’s social exclusion. As an approach which seeks to amplify the perspectives of participants from so called ‘vulnerable groups’, interpretative phenomenological analysis (IPA) appears ideally suited to qualitative research exploring the experiences of the deafblind population. However, one strategy for facilitating the inclusion of deafblind people in qualitative research is the involvement of tactile sign language interpreters, and some have argued that phenomenological methods, such as IPA, be avoided where interpreters are involved. Nevertheless, those promoting IPA encourage flexibility and creativity in its use. Using the example of a UK based study exploring vulnerability among older deafblind people, this paper illustrates how tactile sign language interpreters were involved in IPA research. The criteria for evaluating the management of interpreters in qualitative research devised by Squires are used to frame critical reflection on the necessary adaptation of IPA, and the authors contend that IPA study involving tactile sign language interpreters can successfully give voice to older deafblind people when careful attention is paid to the interpreters’ credentials, role, and positionality, and it is acknowledged that IPA research is completed with not through the interpreters.

Keywords

Critical reflection interpretation language inclusion disability older adults

Introduction

Although research into deafblindness was recently described as being in its infancy (Dammeyer, 2015), there is now a body of clinical research examining its aetiologies a range of prevalence studies, and research exploring difficulties associated with the condition (Simcock, 2020). Nonetheless, in their scoping review of global deafblind literature, Jaiswal et al. (2018) observe a particular lack of qualitative research into deafblind people’s experiences. Writing about the marginalisation of deafblind people in qualitative research, Watharow and Wayland (2022: 8) argue that such paucity leads to ‘data invisibility’. This not only impoverishes our understanding of deafblindness, its impact and the experiences of those who have the condition, but is also a consequence of, and possible contributing factor to, deafblind people’s exclusion from decision-making processes and public participation (Simcock and Wittich, 2019). While the prevalence of deafblindness increases with age (Wittich and Simcock, 2019; World Federation of the Deafblind, 2018), older deafblind people, especially those using sign languages and tactile communication methods, appear to be particularly ‘invisible’ (Simcock, 2017a), notwithstanding a reported desire to be involved in research (Roy et al., 2018). For example, Werngren-Elgström et al. (2006) noted the absence of older sign language users in mainstream gerontological research, and Hulme et al. (2021) more recently highlight the exclusion of sign language users from cultural competence studies exploring minority language users’ experiences of health care. Consequently, their voices are either overlooked or become ‘ghettoized in specialist literature’ (Harris and Roberts, 2003: 21).

Ungar and Nicholl (2002) argue that qualitative research aims to give voice to marginalised populations. As a qualitative research approach fundamentally concerned with lived experiences and how people make sense of these (Smith et al., 2022), interpretative phenomenological analysis (IPA), in particular, seeks to amplify the perspectives of participants, including those from so called ‘vulnerable groups’, an aim it shares with the social work profession (Loo, 2012). IPA therefore appears ideally suited as an approach to adopt when responding to the call of Jaiswal et al. (2018) for more qualitative research exploring the experiences of the deafblind population. However, a challenge in involving tactile sign language using older deafblind people is that this language is rarely the same as that used by researchers. As Rubinstein-Ávila (2013: 1059) observes, while qualitative research is inherently complex, ‘cross-linguistic… inquiries are likely to be even more unpredictable and messier’. In research involving participants who do not share the language of the researcher, language interpreters and language translation may be needed, further increasing its complexity (Stone and West, 2012; Yunus et al., 2022). This complexity is not restricted to practical matters, but is also concerned with epistemology, as approaches to interpretation and translation may affect researcher-participant interaction, data quality, and perceptions as to what knowledge and whose knowledge are important (Young and Temple, 2014). As Young and Temple (2014: 1) argue, decisions researchers make about interpretation and translation have epistemological significance: they ‘have the power to close down some voices and enable others’.

Although she posits that most qualitative research approaches are suited to interpreter involvement, Squires (2009) recommends that phenomenological methods, such as IPA, be avoided, arguing that ‘phenomenological studies can only take place in the language of the participant and cannot involve use of interpreters’ (Squires, 2009: 281). Nevertheless, such a position arguably overlooks the important interpretative role of researchers (termed analysts hereafter) in IPA study, in which they seek to make sense of the participants’ interpretations of their experience: the ‘double hermeneutic’ (Smith et al., 2022). The involvement of a tactile sign language interpreter undoubtedly adds a complex layer to this ‘double hermeneutic’. However, this paper uses the example of a United Kingdom (UK) based IPA study (‘Vulnerability among older deafblind people’), conducted by the first author and supervised by the co-authors, to contend that IPA study involving interpreters can successfully give voice to older deafblind people, when careful attention is paid to the interpreters’ credentials, role and positionality, and it is acknowledged that the study is completed with not through the interpreter. First, an overview of the ‘Vulnerability among older deafblind people’ study is provided, followed by a definition of tactile sign language and a brief overview of the examination of interpreter involvement in qualitative research. The paper then presents its central argument, through critical use of Squires’ (2009) criteria for the evaluation of interpreter involvement in research.

The ‘vulnerability among older deafblind people’ study

The concept of vulnerability has underpinned much adult protection policy and practice in England (Lonbay, 2018), and being identified as vulnerable has sanctioned state intervention (Brown et al., 2017). Nevertheless, it is largely ‘under-examined’ in social work (Philips, 2021), notwithstanding recognition that the way in which vulnerability is understood influences both relationships between social workers and services, and approaches taken to intervention (Brown, 2017; Fawcett, 2009). The ‘Vulnerability among older deafblind people’ study is the first known UK based study of the lived experience of vulnerability among this population. The research was completed in two stages: first, a systematically conducted review, the findings of which are published elsewhere (Simcock, 2017a, 2017b); and second, a qualitative study adopting IPA as the research approach. Data were collected via 18 semi-structured interviews, with eight participants aged 49–83. Two participants used tactile sign language receptively and are pseudonymised here as Celia and Anthony.

Problematising the notion of deafblind people as permanently and immutability vulnerable, participants interpreted their vulnerability as layered, describing what they feel vulnerable about, what they feel vulnerable to and when they feel vulnerable. Although interrelated, the latter layer is predominant: vulnerability is experienced as time-limited, and situation and setting specific. The experience of being misunderstood or perceived as incapable was observed as a shared experience of situational vulnerability and adversely affected participants’ lives, negating their own coping strategies and the effectiveness of available support. Although participants experienced vulnerability, they adopted various coping strategies, and demonstrated creativity as they developed solutions to the challenges they encounter. Though these vary, the ways in which participants managed their difficulties responded to the elements they identified as engendering their felt vulnerability. Detailed study findings are published elsewhere (Simcock et al., 2022a, 2022b).

Tactile sign languages

Reflecting its heterogeneity is the wide range of communication methods and languages used by members of the deafblind population (Hersh, 2013; Watharow and Wayland, 2022). This includes tactile sign language, used by some deafblind people within the UK’s population of 87,000 British Sign Language (BSL) users (Hulme et al., 2021). Largely unknown prior to the 1980s (Gabarró-López and Mesch, 2020), tactile sign languages are essentially adaptations of visual sign languages, used by deafblind people who are no longer able to access sign language visually owing to sight loss (Checchetto et al., 2018). The approach to adaptation is dependent on the needs of the deafblind user (Willoughby et al., 2018); it includes the tactile adaptation of existing cultural sign languages (for example, BSL), but also other systems using touch, movement, and idiosyncratic signs (Chen et al., 2001).

Referring to features of tactile sign language as forming a ‘group of methods of communication’, which he terms ‘the tactile sign language family’, Rose (2020) highlights that methods such as ‘hands-on signing’ and ‘hand-under-hand signing’ are similar in presentation but have important differences. In the UK, ‘hands-on signing’, also termed ‘tactile signing’, is a nationally recognised method of sign language and is based upon BSL. Predominantly used by congenitally Deaf people who subsequently acquire sight loss, such as ‘Vulnerability among older deafblind people’ study participants Celia and Anthony, it involves the deafblind person placing their hands on those of the signer, enabling them to follow the movements and feel the shape of the signs, in order to perceive the language (Reed et al., 1995). As the non-manual features of BSL, such as facial expression and body movement, cannot be seen, these are perceived via the tactile modality; this involves feeling tension, speed of movement, lightness or heaviness of touch, and muscle control (Gabarró-López and Mesch, 2020).

The involvement of interpreters in qualitative research: Background

While the involvement of interpreters can have an influence on studies, including those with deafblind participants (Temple, 2002; Watharow and Wayland, 2022; Yunus et al., 2022), exploration of their role and influence was largely absent in the research methods literature up until the early 2000s (Squires, 2009). Writing in 2002, Temple observed that the involvement of interpreters often went unacknowledged, and, in research practice, was often considered as straightforward. Where it was noted, there was little discussion of practical matters relating to interpretation and translation (Murray and Wynne, 2001) nor any examination of associated methodological concerns (Almalik et al., 2010; Yunus et al., 2022). Although a body of research using various methods explores interpreting and translation, including sign language interpretation, as a discipline in itself (Hessman, 2018; Napier, 2012; Tipton, 2014), there is a paucity of published material considering approaches to evaluating interpreter quality and impact on qualitative inquiry in other disciplines (Almalik et al., 2010; Yunus et al., 2022).

Temple (2002: 845) argues that the insights of interpreting and translation studies have been ‘hidden from mainstream research’; however, her work on cross-language and cross-cultural studies, and that of others (for example, Birgit Jentsch, Rosalind Edwards, Alys Young and Allison Squires), has nevertheless increased the visibility of interpreters and translation in qualitative research. Temple and Young (2004), in particular, advanced the field by exploring the epistemological, methodological, and ethical implications of interpretation and translation involvement in qualitative inquiry, including sign language interpretation. Emphasizing that those using different languages, particularly signed languages, may construct different views of the social world to both researcher and interpreter, they highlight the limitations of strategies such as ‘back translation’ (the process of translating translated material back into the original language, without referring to the original material in order to check accuracy) (ibid.). In their exploration of the uncritical inclusion of English translations of BSL using participants’ quotations, Temple and Young (2004: 166) argue that researchers ‘reinforce the political invisibility of [BSL] and its users’. This political and ethical dimension is also acknowledged in their consideration of the impact of interpreter presence on the status of the participant as a constructor of knowledge, and their examination of the ways in which BSL users may adapt their language for the benefit of hearing interpreters and researchers (ibid.). Such work has continued, as social researchers have begun to explore approaches to analysing the impact of interpreters, the characteristics of interpreters (for example, whether they are demographically ‘matched’ to the participants) and the influence of transcribers of sign language data (Alexander et al., 2004; Young and Temple, 2014). Young and Temple (2014: 130) deftly summarise the epistemological nature of these matters, noting that ‘they mediate what is known, how it is known and who is seen to tell’.

Giving voice: Deciding to collaborate with tactile BSL interpreters in the ‘vulnerability among older deafblind people’ study

Reflecting concerns that ‘degrees of articulateness’ have influenced involvement in social research (Coles, 2001: 503), there are increasing calls for researchers to ensure that voices once unheard are now rendered audible (Borer and Fontana, 2012; Poland and Birt, 2018). Two tactile BSL users, Celia and Anthony, had expressed an interest in participating in the ‘Vulnerability among older deafblind people’ study; therefore, the first author, Peter, had to decide whether his own linguistic abilities could facilitate their involvement. Reflecting Young and Temple’s (2014) observation that researchers’ linguistic proficiency in two or more languages is not necessarily equal in different settings, although Peter possesses BSL qualifications, his use of BSL has principally been in the context of social work practice, not qualitative interviewing. It was therefore determined that the involvement of tactile BSL interpreters was the only way to enable Celia and Anthony’s participation and thus give voice to their experiences.

As the study adopted IPA as its qualitative approach, it was essential that all stages of the research were critically reflected upon (Smith et al., 2022), including this decision to involve interpreters (Young and Temple, 2014). There were positive reasons for adopting IPA for the ‘Vulnerability among older deafblind people’ study, including its focus on detailed and nuanced analysis of lived experience, which highlights variation between participants (Smith et al., 2022). This was particularly important owing to the paucity of research on the topic and the critique of previous studies for homogenising the deafblind population (Dammeyer, 2015; Smith, 1993). Furthermore, Griffin and May (2012: 448) maintain that IPA’s detailed attention to the experiences of marginalised groups can challenge ‘prevailing assumptions that others may make about them’; this was significant owing to bold statements made about the vulnerability of deafblind people with limited empirical evidence to support them (Simcock, 2017b). Informed by the theoretical insights of hermeneutics, IPA recognises the interpretative role of both the participant and the analyst (Biggerstaff and Thompson, 2008; Shinebourne, 2011). In undertaking this role, the analyst must first move from their own world to that of the participant (Smith et al., 2022). In relation to Celia and Anthony’s participation, interpreter involvement was deemed necessary to facilitate this; nevertheless, it must also be acknowledged that for many tactile BSL users, including Celia and Anthony, interpreter mediated communication is not the reserve of research participation, but very much part of their world, owing to the limited number of communication partners with the requisite linguistic proficiency (Simcock, 2020; Watharow and Wayland, 2022). Whilst it has been argued that IPA studies are not suited to interpreter involvement (Squires, 2009), such arguments overlook this reality. Moreover, failure to involve Celia and Anthony as tactile BSL users could negate the study’s claim to represent ‘the older deafblind person perspective’ on vulnerability. Certain older deafblind voices would have been silenced, arguably engendering an epistemic injustice (Fricker, 2007): knowledge production effectively becomes reserved for speech using deafblind individuals.

In their study of interpreter-mediated Mental Health Act 1983 assessments, Young et al. (2023) acknowledge that, in some situations, such assessments would be practically impossible without interpreter involvement. Challenging the notion that ‘working with an interpreter means working in exactly the same way as you always have’ whilst the interpreter ‘sorts out the language barrier’, they argue that practitioners must consider the impact of interpreter involvement and the ways in which they will work differently (Young et al., 2023: 16). Analogously, Celia and Anthony’s involvement in the ‘Vulnerability among older deafblind people’ study would have been practically impossible without interpreter involvement. Noting its rejection of a single standardised method (Smith et al., 2022) and its encouragement of flexibility and creativity (Pietkiewicz and Smith, 2014), rather than dismiss IPA as a suitable approach, consideration was similarly given to the ways in which the study could work differently when collaborating with tactile BSL interpreters. This included addressing practical challenges, such as the need for increased time during data collection to ensure both participants and interpreters had breaks owing to the tiring nature of tactile communication (Hersh, 2013; Simcock, 2020). However, it also involved reflection on epistemological and methodological challenges (Oleson and Jansbøl, 2005; Plumridge et al., 2012; Young and Temple, 2014), such as those described earlier.

Reflecting a lack of evidence-based guidance on working with interpreters in practice settings (Young et al., 2022), there are curiously few guides to using interpreters in qualitative research (Plumridge et al., 2012). Additionally, established guidelines on the reporting of qualitative research do not explicitly comment on the process (Yunus et al., 2022). This is particularly apparent in relation to studies with participants using signed languages (Arndt, 2010; Young and Temple, 2014), notwithstanding the substantial increase in studies of sign language interpretation (Napier, 2012) and the fact that signed languages themselves have been researched using a range of methodologies for over five decades (Hessman, 2018). This paucity of guidance is mirrored by a lack of literature on approaches to evaluating interpreter impact on research processes (Almalik et al., 2010) and the limited exploration of interpreter involvement in, and impact on, studies with deafblind people (Simcock, 2017a, 2017b). Consequently, the criteria for evaluating the management of interpreters in qualitative research devised by Squires (2009), drawing on her review of the nursing and health journals’ methods literature on cross-language research, were used to frame critical reflection on the necessary adaptation of IPA in the ‘Vulnerability among older deafblind people’ study. Careful attention was paid to the ways in which the research was completed with and not merely through the interpreters, by considering their credentials, role, and positionality. Squires (2009) argues that such consideration increases the trustworthiness of the research.

Tactile sign language interpreter as facilitator in IPA study: Credentials

Some social work practitioners are reported to view interpreters as a barrier to relationships rather than facilitators of communication (Pollock, 2023). These barriers are associated with the indirect nature of interpreter-mediated communication, a disruption in communicative flow, and, where the interpreter is perceived to have a better understanding of the service users’ cultural background, a loss of professional standing (Oram et al., 2024; Young et al., 2023). However, interpreters are described as an ‘important way’ of facilitating the inclusion of non-English users in research (Plumridge et al., 2012: 192) and interpreter involvement is listed in Watharow and Wayland’s (2022) process map of strategies to enhance the accessibility of research for deafblind people.

Owing to IPA’s prioritisation of participants’ perspectives (Smith et al., 2022), it is imperative that analysts accurately represent them (Regmi et al., 2010). As such, as Jentsch (1998) observes, the decision to involve interpreters in the ‘Vulnerability among older deafblind people’ study therefore necessitated further decision-making, relating to the skill and qualification level of the interpreters used, their professional status, and whether they are known to the participants. Although ‘interpreting provision in the UK and elsewhere is highly heterogeneous’, consisting of trained and untrained individuals (Tipton, 2014: 466), Squires (2009) recommends use of professional and qualified interpreters. This recommendation is supported by Almalik et al. (2010), who observed significant differences in the accuracy of interpreting between lay and professional interpreters; they suggest that use of lay interpreters has the potential to affect the quality of the data collected and subsequent analysis.

In the ‘Vulnerability among older deafblind people’ study, interpreters registered with the National Registers of Communication Professionals working with Deaf and Deafblind People (NRCPD) were recruited. NRCPD is a voluntary regulator of language service professionals; notwithstanding increased professionalisation of interpreters since the 1980s, there is currently no national mandatory regulatory framework for interpreters in the UK (O’Brien et al., 2023; Young et al., 2023). Furthermore, when working with deafblind people using tactile BSL, the question of qualification is complex. A ‘Registered Interpreter for Deafblind People’ is ordinarily a professional qualified to interpret using deafblind manual (a tactile communication method used by some deafblind people, in which each letter is spelled out onto the hand of the recipient), not tactile BSL (Department for Work and Pensions, 2017). Formal qualifications in interpreting in tactile BSL have only recently been developed by the accrediting body Signature (formerly the Council for the Advancement of Communication with Deaf People), and these are not, at the time of writing, available (Signature, 2023). As such, it was necessary to involve NRCPD registered and qualified ‘BSL interpreters’, rather than ‘interpreters for deafblind people’.

Research has identified differences between visual signed languages and signed languages received and expressed in through the tactile modality (Dammeyer et al., 2015; Gabarró-López and Mesch, 2020; Schwartz, 2008). These differences respond to the necessity of encoding the visual non-manual features of signed language tactually, and are embodied in variations to, inter alia, hand-shape, location, morphology, orientation, the marking of questions and syntax (Gabarró-López and Mesch, 2020; Schwartz, 2008). It is important to note that this research has predominantly considered tactile American Sign Language, tactile Auslan (the official sign language of Australia), tactile Japanese Sign Language and tactile sign languages across mainland Europe (Gabarró-López and Mesch, 2020) and not tactile BSL. Nevertheless, owing to such differences in visual and tactile sign language, NRCPD registered and qualified BSL interpreters who possessed additional experience and skill in tactile communication were involved in the ‘Vulnerability among older deafblind people’ study. Involving interpreters with such experience and skill proved crucial to the collection of credible data. Akin to social work practice with individuals using a different language (Westlake and Jones, 2018), Edwards (2013) observes that in cross-language research, there may be occasions when it is necessary for interpreters to rephrase questions in ways more culturally and linguistically appropriate. Almalik et al. (2010) contend that such rephrasing may be required to secure a valid response to an interview question posed by a researcher, as illustrated in the following interview extract from the ‘Vulnerability among older deafblind people’ study:

Interviewer: How do you think other people see you?

[Interpreter translates question; Anthony looks confused]

Anthony: [vocalises] What?

Interviewer: How do you think other people, what other people think about you?

[Interpreter qualifies question by adding to it: How do you think other Deaf and Hearing people see you?]

Anthony: [signed] when people look at me, you mean?

Interviewer: Yeah

Anthony: [signed to the interpreter] again please, explain please, ‘look at me’?

[Interpreter translates question again using sign ‘THINK’ not ‘SEE’]

Anthony: [signed and vocalised] Oh, what do they think of me?

Despite Squires’ (2009) recommendation, Young and Temple (2014) challenge the notion that professional status and qualification are the priority of research participants, noting that trust in the interpreter may be more important. Nonetheless, writing from their perspective as native sign language users, O’Brien et al. (2023) question the utility of the concept of trust in the context of effective interpretation, and argue that attention is better focused upon demonstrable skill and proof of competence. However, given the relatively small size of the deafblind population (Watharow and Wayland, 2022), participants may have concerns about the maintenance of confidentiality (Plumridge et al., 2012; Watharow and Wayland, 2022), particularly in research on sensitive topics (Oleson and Jansbøl, 2005). Indeed, in the ‘Vulnerability among older deafblind people’ study, Anthony did not wish to be interviewed in the presence of an interpreter known to him owing to such concerns. Honouring this request necessitated considerable and sensitive liaison with various interpreter agencies. This reflects the reality that IPA research is undertaken with interpreters and not merely through them.

In addition to qualification and professional status, Squires (2009), and indeed others (see, for example, Edwards, 2013; Levinger and Ronen, 2008; Plumridge et al., 2012), recommend the use of consistent interpreters through the life of a study, and use of interpreters with knowledge of research processes. Nonetheless, Temple and Young (2004) highlight the role that resources and funding availability play in a researcher’s choice of interpreter and the extent of their involvement. As the first author’s doctoral research, the ‘Vulnerability among older deafblind people’ study was subject to resource constraints. However, lack of funding was not the only challenge; the limited availability of appropriately skilled professional interpreters in England and Wales restricts the options available to researchers working with deafblind people. A search of the National Registers of Communication Professionals working with Deaf and Deafblind People at the commencement of data collection (repeated in February 2024) identified only six professionals with the appropriate qualifications and experience across England and Wales. This challenge is not acknowledged in Squire’s (2009) criteria, perhaps reflecting the fact that only one of the 40 papers she reviewed involved signed language, and this was visual not tactile sign language. It was especially difficult to source an interpreter with the required experience and skill in Celia’s location. After some considerable time, a local specialist interpreter agency identified a BSL user who was proficient in tactile BSL; however, as this person was Deaf, an English/BSL interpreter was also required.

Tactile sign language interpreter as interpreter in IPA study: Role and positionality

Emerging from its theoretical foundation in hermeneutics, a fundamental concept in IPA research is the ‘double hermeneutic’: the interpretative role of both participant and analyst is recognised, as the latter seeks to interpret, or make sense of, the former’s interpretation of his or her experience (Griffin and May, 2012; Smith et al., 2022). In the ‘Vulnerability among older deafblind people’ study, the impact of tactile BSL interpreter involvement upon this ‘double hermeneutic’ required careful consideration. It was necessary to recognise that the analyst must work with the interpreters to make sense of participants’ interpretations of their experiences; this required extending their role beyond data collection and rendering their positionality explicit.

Acknowledging that interpreting is not merely a mechanical process involving the objective conveyance of meaning across languages (Berman and Tyyskä, 2011; Stone and West, 2012), the first author invited the tactile BSL interpreters to collaborate on the first stage of analysis: the interpreters became fellow analysts in the ‘double hermeneutic’ process, working jointly with the first author to make sense of the participants’ interpretations of experience. The first author met in person with the tactile BSL interpreters, and the video recordings of Celia and Anthony’s interviews were watched and rewatched. This afforded an opportunity for the interpreters to pay careful attention to conceptual equivalence and nuance of meaning (Berman and Tyyskä, 2011; Squires, 2009), in addition to correcting translation errors in the accompanying draft written transcripts. However, it was during these meetings that the interpreters took an active role in the hermeneutic process, as participants’ meanings were discussed, queried, and debated, whilst jointly observing the interview in the source language.

Reflecting this active role, which moved beyond the facilitation of data collection, the tactile BSL interpreters were also involved in the production of the final interview transcripts; a potential role not commented upon by Squires (2009) in her evaluative criteria. Johnson and Rowlands (2012: 106) contend that ‘obtaining a verbatim [transcript of an interview] is the ideal, if the subsequent analysis is to be valid and meaningful’. Nevertheless, the notion of a verbatim written transcript is problematised when transcribing interviews with participants using visual and tactile BSL, as this language has no written form (Young and Temple, 2014). As Young and Temple (2014) highlight, moving from signed language to a written transcript involves not only a change in language, but also a change in modality: signed expression, which occurs in four dimensions, is represented on paper in two dimensions. Informed by the discussions and debates described above, the tactile BSL interpreters contributed to the production of the transcriptions, which are better termed ‘translations’ (Young and Temple, 2014). Whilst their involvement during the interviews was ‘in the moment’, production of these translations was completed over time, with opportunities to review and revisit; this reflects the intrinsic difference between interpreting and translation (Napier, 2012). Nonetheless, in producing these written records, the interpreters engaged in both interpretation and translation: translation from one visual/tactile language to another in written form, and, in collaboration with the first author, in interpretation of the sense making of the participants.

A second fundamental idea in IPA research emerging from its theoretical foundation in hermeneutics is the ‘hermeneutic circle’ (Larkin et al., 2006; Smith et al., 2022). Analysts seek to engage closely with the participants’ words, as they seek to describe and interpret their own experiences; here they move from their world to that of the participant (Smith et al., 2022). The analysis moves back and forth, as the meanings of the participant are interpreted, until analysts return to their own perspective, which is now transformed as a result of engaging with the participant’s account (Smith, 2007). In engaging in this ‘hermeneutic circle’, IPA recognises that whilst the analyst seeks to bracket their own preconceptions, experiences, and concerns, this can only ever be achieved in part (Larkin et al., 2006; Smith et al., 2022). Indeed, as the role of the analyst as interpreter is as important as the participants’ descriptions, the influence of his or her preconceptions and concerns is seen as a ‘positive component of analysis rather than unhelpful bias’ (Oram et al., 2024: 96). Nonetheless, such influence is only conceptualised in this way when it is rendered explicit (ibid.). Interpreters too have their own perspectives, experiences, background, and culture, which will influence the knowledge produced in the research (Field et al., 2021; Spooner et al., 2018; Tipton, 2014; Young and Temple, 2014; Yunus et al., 2022). In the ‘Vulnerability among older deafblind people’ study, that the research was undertaken with and not merely through the tactile BSL interpreters was recognised: they were considered co-constructors of knowledge, alongside the participants and analyst (Young and Temple, 2014). Accordingly, their identity and role were rendered visible in the write up of the study. Interpreter biographies were included in the methods section, with express permission, covering matters such as social location, sex, family background, education and qualifications, experiences, and specialist skills (Simcock, 2020).

Conclusion

The ostensible methodological challenges of involving deafblind people in research, combined with the paucity of qualitative literature on strategies to facilitate it, contribute to the invisibility of deafblind people and impoverish our understanding of their experiences. A research priority, therefore, appears to be determining and describing effective ways of involving deafblind people in qualitative inquiry, particularly those using tactile communication methods, as participants, co-researchers, and collaborators. Offering more detailed descriptions of qualitative research methods in published papers would assist other researchers exploring deafblindness and the experiences of deafblind people; this work has begun and is to be welcomed (see, for example, Bacchini and Simcock, 2020; Jaiswal et al., 2020; Roy et al., 2018; Skilton et al., 2018; Watharow and Wayland, 2022).

As an approach which seeks to amplify the perspectives of participants from so-called ‘vulnerable groups’, interpretative phenomenological analysis (IPA) appears ideally suited to qualitative research exploring the experiences of the deafblind population. However, one strategy for facilitating the inclusion of deafblind people in qualitative research is the involvement of tactile sign language interpreters, and some have argued that phenomenological methods, such as IPA, be avoided where interpreters are involved. Nevertheless, such a position arguably overlooks the important interpretative role of analysts in IPA study, and the reality that interpreter mediated communication is not the reserve of research participation, but very much part of tactile sign language users’ worlds. Using the example of a UK based study, this paper illustrates that IPA study involving interpreters can successfully give voice to older deafblind people, when careful attention is paid to the interpreters’ credentials, role, and positionality, and it is acknowledged that IPA research is completed with not through the interpreter.

Footnotes

Acknowledgements

The authors are very grateful to the editor and reviewers for very helpful and constructive comments on earlier drafts of this paper. We are also very grateful to the eight participants and three tactile BSL interpreters who took part in the ‘Vulnerability among older deafblind people’ study. The first author received monies from the British Association of Social Workers’ Social Workers’ Educational Trust (BASW SWET) to support the ‘Vulnerability among older deafblind people’ study, which was much appreciated.

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) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by British Association of Social Workers (BASW) Social Workers’ Educational Trust (SWET).

ORCID iD

Peter Simcock

References

Alexander

Edwards

Temple

(2004) Access to Services with Interpreters: User Views. York: Joseph Rowntree Foundation.

Almalik

Kiger

Tucker

(2010) “What did she say? What did she say?” The impact of interpretation on recruiting and interviewing European migrant women in the United Kingdom. International Journal of Qualitative Methods 9: 252–269.

Arndt

(2010) Conducting interviews with people who are deafblind: issues in recording and transcription. Field Methods 23: 204–214.

Bacchini

Simcock

(2020) A Silent Minority, unheard and unseen? A reflective account of methodological and lingustic challenges in research with older people ageing with deafblindness. Expression 1: 147–166.

Berman

Tyyskä

(2011) A critical reflection on the use of translators/interpreters in a qualitative cross-language research project. International Journal of Qualitative Methods 10: 178–190.

Biggerstaff

Thompson

(2008) Interpretative phenomenological analysis (IPA): a qualitative methodology of choice in healthcare research. Qualitative Research in Psychology 5: 214–224.

Borer

Fontana

(2012) Postmodern trends: expanding the horizons of interviewing practices and epistemologies. In: Gubrium

Holstein

Marvasti

, et al. (eds) The Sage Handbook of Interview Research. 2nd edition. London: Sage, 45–60.

Brown

(2017) Introduction: vulnerability and social justice. Social Policy and Society 16: 423–427.

Brown

Ecclestone

Emmel

(2017) The many faces of vulnerability. Social Policy and Society 16: 497–510.

10.

Checchetto

Geraci

Cecchetto

, et al. (2018) The language instinct in extreme circumstances: the transition to tactile Italian Sign Language (LISt) by deafblind signers. Glossa: A Journal of General Linguistics 3: 1–28.

11.

Chen

Downing

Rodriguez-Gil

(2001) Tactile strategies for children who are deaf-blind: considerations and concerns from project SALUTE. Deaf-Blind Perspectives 8: 1–6.

12.

Coles

(2001) The social model of disability: what does it mean for practice in services for people with learning difficulties? Disability & Society 16: 501–510.

13.

Dammeyer

(2015) Deafblindness and dual sensory loss research: current status and future directions. World Journal of Otorhinolaryngology 5: 37–40.

14.

Dammeyer

Nielsen

Strøm

(2015) A case study of tactile language and its possible structure: a tentative outline to study tactile language systems among children with congenital deafblindness. Journal of Communication Disorders, Deaf Studies & Hearing Aids 3: 133–139.

15.

Department for Work and Pensions (2017) Market Review of British Sign Language and Communications Provision for People Who Are Deaf or Have Hearing Loss: Summary of Responses. London: Department for Work and Pensions.

16.

Edwards

(2013) Power and trust: an academic researcher’s perspective on working with interpreters as gatekeepers. International Journal of Social Research Methodology 16: 503–514.

17.

Fawcett

(2009) Vulnerability: questioning the certainties in social work and health. International Social Work 52: 473–484.

18.

Field

Barns

Chung

, et al. (2021) Messiness in international qualitative interviewing: what I did, what I didn’t do, and a little bit about why. Qualitative Social Work 21: 833–849.

19.

Fricker

(2007) Epistemic Injustice: Power and the Ethics of Knowing. Oxford: Oxford University Press.

20.

Gabarró-López

Mesch

(2020) Conveying environmental information to deafblind people: a study of tactile sign language interpreting. Frontiers in Education 5: 1–12 (accessed 30 2022).

21.

Griffin

May

(2012) Narrative analysis and interpretative phenomenological analysis. In: Seale

(ed) Researching Society and Culture. 3rd edition. London: Sage, 441–458.

22.

Harris

Roberts

(2003) Challenging barriers to participation in qualitative research: involving disabled refugees. International Journal of Qualitative Methods 2: 14–22.

23.

Hersh

(2013) Deafblind people, communication, independence, and isolation. Journal of Deaf Studies and Deaf Education 18: 446–463.

24.

Hessmann

(2018) Researching sign languages, interpreting and translation. Signed Language Interpreting and Translation 13: 150–161.

25.

Hulme

Young

Munro

(2021) Exploring the lived experiences of British Sign Language (BSL) users who access NHS adult hearing aid clinics: an interpretative phenomenological analysis. International Journal of Audiology 61: 744–751.

26.

Jaiswal

Aldersley

Wittich

, et al. (2018) Participation experiences of people with deafblindness or dual sensory loss: a scoping review of global deafblind literature. PLoS One 13: 1–26.

27.

Jaiswal

Aldersey

Wittich

, et al (2020) Conducting qualitative research with individuals living with deafblindness. Sage Research Methods Cases. https://bcu.idm.oclc.org/login?url=https://methods.sagepub.com/case/conducting-qualitative-research-with-individuals-living-with-deafblindness (accessed 10 08 2020).

28.

Jentsch

(1998) The ‘interpreter effect’: rendering interpreters visible in cross-cultural research and methodology. Journal of European Social Policy 8: 275–289.

29.

Johnson

Rowlands

(2012) The interpersonal dynamics of in-depth interviewing. In: Gubrium

Holstein

Marvasti

, et al. (eds) The Sage Handbook of Interview Research. 2nd edition. London: Sage, 99–113.

30.

Larkin

Watts

Clifton

(2006) Giving voice and making sense in interpretative phenomenological analysis. Qualitative Research in Psychology 3: 102–120.

31.

Levinger

Ronen

(2008) Is it really clear? Adapting research tools for the needs of the deaf population. Journal of Social Work 8: 399–430.

32.

Lonbay

(2018) These are vulnerable people who don’t have a voice’: exploring constructions of vulnerability and ageing in the context of safeguarding older people. British Journal of Social Work 48: 1033–1051.

33.

Loo

EWH

(2012) Every contact leaves a trace: IPA as a method for social work research. In: International Conference: Innovative Research in a Changing and Challenging World, Phuket, Thailand. 16th-18th May. (Accessed: 26 02 2024).

34.

Murray

Wynne

(2001) Using an interpreter to research community, work and family. Community, Work & Family 4: 157–170.

35.

Napier

(2012) Signed language interpreting. In: Malmkjær

Windle

(eds) The Oxford Handbook of Translation Studies. Oxford: Oxford University Press, 357–376.

36.

O’Brien

Hodge

Gulamani

, et al. (2023) Deaf professionals’ perceptions of ‘trust’ in relationships with signed language interpreters. The International Journal of Translation and Interpreting Research 15: 25–42.

37.

Oleson

Jansbøl

(2005) Experiences From People With Deafblindness - A Nordic Project. Herlev, Denmark: Information Center for Acquired Deafblindness.

38.

Oram

Young

Cartney

(2024) Now you see them, now you don’t: professional recognition of specialist professionals working with Deaf British Sign Language parents in child safeguarding. Qualitative Social Work 23: 91–107.

39.

Philips

(2021) Where has vulnerability gone? Qualitative Social Work 20: 179–185.

40.

Pietkiewicz

Smith

(2014) A practical guide to using Interpretative Phenomenological Analysis in qualitative research psychology. Czasopismo Psychologiczne-Psychological Journal 20: 7–16.

41.

Plumridge

Redwood

Greenfield

, et al. (2012) Involving interpreters in research studies. Journal of Health Services Research and Policy 17: 190–192.

42.

Poland

Birt

(2018) Protecting and empowering research with the vulnerable older person. In: Iphofen

Tolich

(eds) The Sage Handbook of Qualitative Research Ethics. London: Sage, 382–395.

43.

Pollock

(2023) Social work with interpreters: using practitioner knowledge to improve practice. British Journal of Social Work 53: 3685–3703.

44.

Reed

Delhorne

Durlach

, et al. (1995) A study of the tactual reception of Sign Language. Journal of Speech & Hearing Research 38: 477–489.

45.

Regmi

Naidoo

Pilkington

(2010) Understanding the processes of translation and transliteration in qualitative research. International Journal of Qualitative Methods 9: 16–26.

46.

Rose

(2020) A Framework for Learners Developing Bodily-Tactile Communication and Tactile Sign Language Skills. London: Steve Rose Therapy.

47.

Roy

McVilly

Crisp

(2018) Preparing for inclusive consultation, research and policy development: insights from the field of Deafblindness. Journal of Social Inclusion 9: 71–88.

48.

Rubinstein-Ávila

(2013) Accounting for–and owning up to–the messiness in cross-cultural/linguistic qualitative research: toward methodological reflexivity in South America’s Internet cafés. International Journal of Qualitative Studies in Education 26: 1041–1061.

49.

Schwartz

(2008) Tactile sign language corpora: capture and annotation issues. In: Language Resources and Evaluation Conference: 3rd Workshop on the Representation and Processing of Signed Languages: Construction and Exploitation of Sign Language Corpora. Marrakech, Morrocco, 170–173.

50.

Shinebourne

(2011) Interpretative phenomenological analysis. In: Frost

(ed) Qualitative Research Methods in Psychology: Combining Core Approaches. Maidenhead: Open University, 44–65.

51.

Signature (2023) Deafblind Communication. Wolverhampton: Signature. Available at: https://www.signature.org.uk/deafblind-communication/.

52.

Simcock

(2017a) Ageing with a unique impairment: a systematically conducted review of older deafblind people’s experiences. Ageing and Society 37: 1703–1742.

53.

Simcock

(2017b) One of society’s most vulnerable groups? A systematically conducted literature review exploring the vulnerability of deafblind people. Health and Social Care in the Community 25: 813–839.

54.

Simcock

(2020) The Lived Experience of Vulnerability Among Adults Ageing with Deafblindness: An Interpretative Phenomenological Analysis. London: Institute of Gerontology, King’s College London.

55.

Simcock

Wittich

(2019) Are older deafblind people being left behind? a narrative review of literature on deafblindness through the lens of the United Nations principles for older people. Journal of Social Welfare and Family Law 41: 339–357.

56.

Simcock

Manthorpe

Tinker

(2022a) A salutogenesis approach to ageing with impairment: the managing and coping experiences of older people ageing with deafblindness. Ageing and Society 43: 2957–2982.

57.

Simcock

Manthorpe

Tinker

(2022b) Vulnerability among older people ageing with deafblindness. Journal of Social Work 23: 60–84.

58.

Skilton

Boswell

Prince

, et al. (2018) Overcoming barriers to the involvement of deafblind people in conversations about research: recommendations from individuals with Usher syndrome. Research Involvement and Engagement 4: 40–51.

59.

Smith

(1993) Psychosocial services: reaction. In: Reiman

Johnson

(eds) National Symposium on Children and Youth Who Are Deaf-Blind. Monmouth, OR: Teaching Research Publications, 21–40.

60.

Smith

Flowers

Larkin

(2022) Interpretative phenomenological analysis. In: Theory, Method and Research. 2nd edition. London: Sage.

61.

Spooner

Sutton-Spence

Lerner

, et al. (2018) Invisible no more: recasting the role of the ASL-English literary translator. Signed Language Interpreting and Translation 13: 110–129.

62.

Squires

(2009) Methodological challenges in cross-language qualitative research: a research review. International Journal of Nursing Studies 46: 277–287.

63.

Stone

West

(2012) Translation, representation and the deaf ‘voice. Qualitative Research 12: 645–665.

64.

Temple

(2002) Crossed wires: interpreters, translators, and bilingual workers in cross-language research. Qualitative Health Research 12: 844–854.

65.

Temple

Young

(2004) Qualitative research and translation dilemmas. Qualitative Research 4: 161–178.

66.

Tipton

(2014) Perceptions of the ‘occupational other’: interpreters, social workers and intercultures. British Journal of Social Work 46: 463–479.

67.

Ungar

Nicholl

(2002) The harmony of resistance: qualitative research and ethical practice in social work. In: van den Hoonaard

(ed) Walking the Tightrope: Ethical Issues for Qualitative Researchers. Toronto: University of Toronto Press, 137–151.

68.

Watharow

Wayland

(2022) Making qualitative research inclusive: methodological insights in disability research. International Journal of Qualitative Methods 21: 1–10.

69.

Werngren-Elgström

Brandt

Iwarsson

(2006) Everyday activities and social contacts among older deaf sign language users: relationships to health and well-being. Occupational Therapy International 13: 207–223.

70.

Westlake

Jones

(2018) Breaking down language barriers: a practice-near study of social work using interpreters. British Journal of Social Work 48: 1388–1408.

71.

Willoughby

Iwasaki

Bartlett

, et al. (2018) Tactile sign languages. Handbook of pragmatics 21: 239–258.

72.

Wittich

Simcock

(2019) Aging and combined vision and hearing loss. In: Ravenscroft

(ed) The Routledge Handbook of Visual Impairment. London: Routledge, 438–451.

73.

World Federation of the Deafblind (2018) At risk of exclusion from CRPD and SDGS implementation: inequality and persons with deafblindness. In: Initial Global Report 2018. Oslo, Norway: World Federation of the Deafblind.

74.

Young

Temple

(2014) Approaches to Social Research: The Case of Deaf Studies. Oxford: Oxford University Press.

75.

Young

Ferguson-Coleman

Keady

(2014) Understanding the personhood of Deaf people with dementia: methodological issues. Journal of Aging Studies 31: 62–69.

76.

Young

Rodríguez Vicente

Tipton

, et al. (2022) A scoping review of interpreter-mediated assessments under the mental health act (1983) and international equivalents. In Inplasy Protocol 202220086. Milton Keynes: The Open University. Available at: https://inplasy.com/inplasy-2022-2-0086/.

77.

Young

Vicary

Tipton

, et al. (2023) Mental health professionals (AMHPs) perspectives on interpreter-mediated mental health act assessments. Journal of Social Work 24: 219–239. DOI: 10.1177/14680173231197987.

78.

Yunus

Hartman

Lucassen

, et al. (2022) Reporting of the translation process in qualitative health research: a neglected importance. International Journal of Qualitative Methods 21: 1–6.