Adapting photovoice to explore identity expression amongst people with intellectual disabilities who have limited or no verbal communication

Background: Inclusive research requires adapting methodologies to meet the needs of people with all degrees of intellectual disabilities. However, it must also balance this with the requirements of academic research. Building from previous research a study was completed to illustrate how photovoice could not only be adapted to meet the needs of people with intellectual disabilities who have limited or no verbal communication but to also explore how they express their identity. Methods: A qualitative multiple case study method was used to explore identity expression amongst three participants with intellectual disabilities and limited or no verbal communication. The methodology integrated ethnographic observations, photovoice and interview techniques. Findings: Integrating the ethnographic observations, photovoice and interview techniques offered families and carers the opportunity to become curious about participants' identities, and this methodology was considered valuable in getting to know more about the person. Conclusions: It is hoped that through conducting research that directly involves people with intellectual disabilities, more creative and inclusive methods can be explored, verified and applied across various research contexts.


| INTRODUC TI ON
People with intellectual disabilities who are nonverbal are often left out of academic research, but new creative research methods, such as inviting participants to take photographs (a method known as photovoice), have gone some way to re-address this in recent years.
However, there are challenges to balancing creative methodological approaches to what is considered reliable and valid research. In the past, this has led to the exclusion of people with more severe forms of intellectual disabilities (Cluley, 2016;Mietola et al., 2017). This paper will describe how a recent study, built from previous research (Baxter & Jack, 2008;Cluley, 2016;Povee, 2014;Booth and Booth, 2003;Thompson, 2018;Yin, 2004), to develop an inclusive methodology to involve people with intellectual disabilities who have limited or no verbal communication. The paper will focus on the reasons why this research is important, how visual methodologies have been applied in inclusive research and how an adapted methodology was created and utilised to explore identity expression. Attention will specifically be paid to the development and implementation of the adapted methodology rather than reporting on the research findings from the study.
Throughout this paper, the terms 'people with intellectual disabilities' and 'people with severe and profound intellectual disabilities' will be used to reflect people's level of need and functioning.

The Diagnostic Statistical Manual (DSM-V; American Psychiatric
Association 2013) identifies severity codes that reflect the clinician's impression of the severity of adaptive functioning; 'profound', 'severe', 'moderate' or 'mild'. These categories are not rigid, nor are there clear dividing lines between the different groups (Mietola et al., 2017). In the United Kingdom, these terms are determined by society and we use them to make distinctions between levels of need (Povee, 2014; British Institute of Learning Disabilities 2019).
For example, people described as having more severe and profound intellectual disabilities are likely to experience cognitive difficulties, to use nonverbal forms of communication and to be unable to attend to their own basic needs (World Health Organization 1992).

| Identity expression
The word 'identity' is often used in everyday discourse, yet it is difficult to provide a succinct summary that captures the range of its meanings (Beart et al., 2005;Fearon, 1999;Vignoles, 2017). Whilst the dictionary may define it as "who a person is, or the qualities of a person or group that make them different from others" (Cambridge Dictionary, 2019), this does not fully capture the meaning(s) of 'identity' (Fearon, 1999). Much of the work exploring identity amongst people with intellectual disabilities has considered identity as a fluid concept, developed within the contexts of ongoing relational experiences with others and not something that relies solely on the internal world of a person. These ideas adopt a social constructionist view, that is, our understandings of the world are socially derived and "what we take to be knowledge of the world, and self, finds its origins in human relationships" (Gergen, 2011, p. 109). This perspective argues that a person cannot be separated from their social context but instead, they derive their identities from social interactions (Beart et al., 2005). Therefore, we can learn about a person's identity through their communication and interactions with others and their environment.
Intellectual disability is "commonly conceptualised as a stigmatising identity" (Dorozenko et al., 2015, p. 1,345) and a "master status that overrides all other identities and social roles a person may have" (Povee, 2014, p. 232). For people with intellectual disabilities, the embodiment of these labels has resulted in a broad range of biases and social assumptions being made about a person's competence, abilities and access to opportunities (Beart et al., 2005;Davies & Jenkins, 1997;Povee, 2014). However, taking a fluid and relational perspective can open new ways of understanding identity and hopefully impact the way intellectual disabilities are viewed within society. To do this, we need to consider the methods we adopt within academia and research to ensure they are inclusive and not exclusive of the needs of people with severe and profound intellectual disabilities.

| Involving people with intellectual disabilities in research
Prior to 1980, it was "unusual for people with intellectual disabilities" to be included in research (Box all & Ralph, 2010, p. 174), and if they were, the approach was "very much research on rather than research with" (Kiernan, 1999, p. 44). Furthermore, much of the research involved people who were connected to the person with intellectual disabilities, rather than the person themselves. Over subsequent decades, there has been more interest and investment in involving people with varying degrees of intellectual disabilities in research. 'Inclusive research', an umbrella term for emancipatory and participatory research, has grown in practice and is underpinned by social model theorists. Walmsley (2004) argued that people with intellectual disabilities must be actively involved in research rather than passive recipients and that research should be pursued in the best interests of the research subjects.
Described as "probably the most marginal group of disabled people in both society and in research" (Mietola et al., 2017, p. 264), people with severe and profound intellectual disabilities continue to be excluded from theoretical, methodological and empirical discussions, regardless of the efforts of inclusive research (Box all & Ralph, 2010;Cluley, 2016;Mietola et al., 2017). Cluley (2016) argues that the epistemological parameters of traditional research methods are not inclusive of people who have severe and profound intellectual disabilities. In other words, through using interviews and focus groups (methods typically used within inclusive research), there is an implicit expectation that participants have certain cognitive and communicative capacities that are less accessible for people with severe and profound intellectual disabilities (Kiernan, 1999;Mietola et al., 2017). There have also been questions raised about whether it is possible for people with severe and profound intellectual disabilities to have views on complex issues, such as identity, but also whether researchers can accurately capture these (Box all & Ralph, 2010;Cluley, 2016;Ware, 2004). Therefore, it is important that researchers be aware of the communication abilities of their participants, acknowledge the degree to which inferences are being made, and the limits of what can be achieved (Porter et al., 2001;Ware, 2004). Boxall and Ralph (2009) argue that these uncertainties and concerns about capturing the views of people with severe and profound intellectual disabilities are exacerbated by developments in research governance and ethical review processes in the UK. They question whether the tightening of ethical approval measures will extend towards limits being placed on the application of novel methodologies that are required to involve people with severe and profound intellectual disabilities in research, for example visual methodologies.
There is of course, an important role for governance and ethical review processes within disability research. Yet, as Boxall and Ralph (2009) (Walmsley, 2004) and the challenges of capacity and consent (Cameron & Murphy, 2007).

| Visual research methodologies
Over the last decade, several studies have set out to explore how to directly involve people with severe and profound intellectual disabilities in research (Boxall & Ralph, 2010;Brewster, 2004;Cluley, 2016;Robinson & Eagle, 2018;Rojas & Sanahuja, 2011).
Utilising visual methodologies (such as taking photographs, videos or making drawings), these studies have actively involved participants in research and offered the "opportunity to voice their worlds visually" (Cluley, 2016, p. 42). Visual methods offer a "medium to explore, know and understand" (Rojas & Sanahuja, 2011, p.36) more about participants and are considered invaluable by many researchers in the field for engaging and empowering participants who are typically excluded from research (Robinson & Eagle, 2018).

| Photovoice
One form of visual methodology which has a growing literature base is photovoice (Booth & Booth, 2003;Cluley, 2016;Povee et al., 2014;Shumba & Moodley, 2018). Conceptualised by Caroline Wang and Mary Ann Burris in the early 1990s, it was originally termed Photo Novella, meaning 'picture stories'. Developed as a participatory action research tool, it centres participants in the study and offers "greater decision-making agency than traditional researcher-directed studies" (Sutton-Brown, 2014, p. 171). Over time it was redefined by Wang and Burris (1997), to 'photovoice' and described as "a process by which people can identify, represent and enhance their community through a specific photographic technique" (Wang, 1999, p. 185). This meets the aims of inclusive research and researching with people who have intellectual disabilities rather than researching on people with intellectual disabilities (Cluley, 2016;Ellis, 2014).
Photovoice involves a series of nine procedural steps; see Table 1. Whilst there is a prescriptive element to these steps, Wang and Burris (1997) emphasise that there are many ways in which photovoice can be applied across different contexts with different groups and communities and for different purposes. This adaptability within the photovoice methodology has led to variation in both its delivery and application within a wide range of contexts to meet the needs of its participants (see Overmars-Marx et al. (2018); Sutton-Brown, 2014).
Of the research completed with people who have intellectual disabilities, a limited number of these have included participants with more severe cognitive disabilities. Photovoice as a method "emphasises action over cognition" (Booth & Booth, 2003, p. 432) therefore making it accessible to participants who have limited linguistic ability.
However, some have argued that photovoice is not suitable for participants who are unable to communicate verbally (Jurkowski, 2008;Overmars-Marx et al., 2018). This has mainly been due to the challenges faced in gaining participants' reflections on their photo-

TA B L E 1
The process of implementing photovoice (Cluley, 2016;Wang, 1999) Process of photovoice Step 1 Select and recruit target audience Step 2 Recruit participants Step 3 Introduce photovoice methodology Step 4 Obtain informed consent Step 5 Identify an initial theme Step 6 Distribute cameras Step 7 Provide time to take pictures Step 8 Meet to discuss photographs Step 9 Plan a format to share photographs and stories with policymakers or community leaders.
In another study, Cluley (2016) outlines how photovoice can be successfully used to include people with severe and profound intellectual disabilities in research. Cluley (2016) emphasised the importance of a flexible approach to inclusive research that accommodates a range of abilities to avoid unwarranted claims, generalisations or further marginalisation of people with intellectual disabilities. Cluley (2016) also stresses the importance of being realistic about the type of research questions asked, and acceptance that the structure and outcomes will be different from research involving those that do not have an intellectual disability. Cluley (2016, p. 44) advocates for the involvement of carers as co-researchers or 'allies' and emphasises the "plurality of voices is a necessary condition" when including people with severe and profound intellectual disabilities in research. If applied, Cluley (2016) concludes that it would be possible to conduct inclusive research that is accessible to people of all cognitive abilities and focuses on limitations of methodology rather than individual limits.
As noted above, there have been criticisms in relation to involving participants in research who are unable to provide their own account or validate accounts made by those around them (Ware, 2004); the interpretative nature of such visual approaches runs the risk of "putting words into their mouths" (Brewster, 2004, p. 166). Whilst inviting family members to participate allows the opportunity to draw on wider experiences, their accounts must not be considered 'absolute' (Cluley, 2016). Rather the process of ascertaining views should be considered an ongoing process (Brewster, 2004), one that utilises multiple sources of data and adopts methods to explore response from carers and family members (Cluley, 2016). Ultimately, it is important that not only do researchers take responsibility for conducting mediated approaches, but ethical bodies and academics accept that "facilitating voices are sometimes necessary" (Cluley, 2016, p.45) to avoid the exclusion of people with intellectual disabilities in research.
In summary, there has been a growing interest in the application of visual methodologies as a way of directly involving participants with intellectual disabilities in research. This participation can support people with intellectual disabilities to tell their own stories and change the way in which they are not only supported day to day, but viewed within society.
At present, there is limited research involving people with more severe and profound intellectual disabilities. Arguably, it is people with severe and profound intellectual disabilities, whose identities are more likely to be misrepresented, due to the inability for them to confirm or deny the narratives that surround them. Therefore, identifying creative ways of involving participants with severe and profound intellectual disabilities in research, through giving them a visual voice, could help encourage people to re-evaluate how they perceive people with such needs and challenge the idea of being seen as 'less than human' (Kamlager, 2013).

| DE VELOPING A ME THODOLOGY
The project outlined in this paper set out to research whether photovoice could explore identity expression amongst people with a diagnosis of intellectual disabilities and limited or no verbal language.
Of the three research questions explored in the project, this paper will focus on the following: • Can photovoice be used as a research methodology to engage people with intellectual disabilities in research? •

| Adapting photovoice to be inclusive of people with intellectual disabilities and limited or no verbal communication
It was important to identify a qualitative methodology, which supported creative and flexible methods of data collection, whilst remaining academically rigorous. Therefore, drawing on previous research (Baxter & Jack, 2008;Ellis, 2014;Gustafsson, 2017;Llewellyn 1995;McDonald et al., 2012;Thompson, 2018), a multiple case study approach was adopted. Defined by Baxter and Jack (2008, p.544) as "research that facilitates exploration of a phenomenon within its context using a variety of data sources…this ensures the issue is not explored through one lens, but rather a variety of lenses." Collecting data from multiple sources supports a flexible research methodology that is responsive to the needs of participants and appreciates the complexity of exploring identities (Ellis, 2014). The different layers of data collection methods incorporated into this project's design are outlined below and adopt a similar method to that of Thompson (2018; see Figure 1).

| A layered approach
A combination of data collection strategies made up the different stages of this project's methodology including ethnographic field notes, photovoice, transcribed interviews and the researcher's reflections (see Figure 2).

| Stage 1: Ethnography
The project adopted an ethnographic approach to collecting data (Finlay et al., 2007;Ellis, 2014;Hubert & Hollins, 2010). Ethnography "is the study of people in naturally occurring settings or 'fields' by methods of data collection which capture their social meanings and ordinary activities" (Brewer, 2000, p. 6). It is the researcher's aim to immerse themselves within the group, observing and interpreting everyday behaviour (Holloway et al., 2010;Fusch et al. 2017).
Whilst traditional ethnographic research is longitudinal, the project adopted a mini-ethnographic approach, only lasting several months (Ellis, 2014;Fusch et al., 2017). This approach particularly suited the aims of the project since it allowed for naturalistic observation of how individuals with intellectual disabilities expressed their identities in their own contexts, allowing for the opportunity to gather richer data.
The ethnographic aspect of the project mainly involved observing participants at college, with one participant also visited at their residential address. These visits occurred several times a week over the course of a month. Each participant was observed on different days, times and contexts (e.g. in college or on trips out in the community) to allow for a variation in data collection and opportunity to see the participant in different contexts. During each visit, field notes were taken describing the events that occurred throughout the observation period including how the young person presented themselves (e.g. clothes), their interactions with others, gestures and involvement in activities (see Ellis, 2014;Fusch et al., 2017). In addition to this, conversations and statements made by those supporting the individual were also noted.
F I G U R E 1 A diagram illustrating the different methods of data collection and process of analysis (Adapted from Thompson, 2018) F I G U R E 2 A diagram illustrating the stages of data collection 2.2.2 | Stage 2: Photovoice Each young person was asked to take photographs over a period of two weeks. Participants were provided with a visual information sheet. In line with photovoice guidelines, limited instruction was given to participants around what they take pictures of. The only direction parents and carers received was to support the participant to take pictures of things that were meaningful to them. Two of the participants were provided with a camera, the third utilised their own iPad. Those provided with a camera were shown how to use it.
After the two weeks, the cameras were collected and photographs printed. For the participant using the iPad photographs were shared electronically. Family members and carers were asked to keep notes on how the participant engaged in the activity and any challenges that were faced.

| Stage 3: Interviews
Typically Due to the global outbreak of coronavirus, it was not possible to complete two of these interviews as intended. Therefore, alternative methods were used, one via Skype and another by telephone.
Family members were further invited to 'step into the participant's shoes' and answer questions in the first person, that is from the participant's perspective (Head, 2017 Therefore, in line with Cluley (2016), this study adopted Boxall's (2010)

| Reflexive journal
In line with the positioning of the researcher in this project, an important aspect of the design is the researcher's reflexivity. As defined by Ellis (2014, p. 64) reflexivity is used to study the interactions between researcher and participants at a deeper level by moving the observational lens from "The aim was to encourage conscious awareness of the researcher's values and make visible the 'constructed nature of research outcomes'" (Ortlipp, 2008, p. 695). A reflexive journal was kept throughout the duration of the project. Written through the researcher's lens, the journal contained "thoughts, opinions, musings, discussions, and reflections on the process and the participants" (Fusch et al., 2017, p. 930).

| A PRO CE SS OF TRIANG UL ATI ON AND ANALYS IS
One of the benefits of utilising multiple methods of data collection is that the data can be triangulated to identify converging lines of evidence. Triangulation can be described as combining research methods to answer particular research question(s). It is a systematic process that involves the researcher identifying patterns, across and between data, to validate the analytic process (Mays & Pope, 2000).
Through combining methods, it can help avoid biases that may arise out of a singular method, help explore and explain complex issues, and increase credibility and validity of research findings (Noble & Heale, 2019;Yin, 2004). It has also been identified as a useful method when conducting research with people with intellectual disabilities (Llewellyn, 1995), as it offers flexibility and allows for participants' preferences to be met through different methods of data collection.

| Analysis procedure
The analysis procedure followed recommendations from Yin (2004) and Baxter and Jack (2008). The process of analysis involved triangulating the data (field notes and interview transcripts), initially within each case and then across the three cases (Yin, 2004) using reflexive thematic analysis (TA; Braun & Clarke, 2006, 2018, 2019. Braun and Clarke define TA as "a method for systematically identifying, organising, and offering insight into patterns of meaning (themes) across a data set" (2012, p.57). Data were coded line by line using phrases and sentences. Both inductive and deductive coding processes were adopted. It is important to note the photographs themselves were not analysed but incorporated into the interviews to prompt discussion. The process of presenting the within-case data was guided by previous papers, some of which included vignettes as a way of introducing the reader to the case and illustrating themes within each case pertinent to the research questions (see Hubert & Hollins, 2010;Johnson, 1998;Thompson, 2018). A summary of the analysis process is illustrated in Figure 3.

| FINDING S
Utilising all three components (ethnographic observations, photovoice and interview) contributed to understanding aspects of a person's perceived identity. The ethnographic observations often reinforced what was discussed with families and carers during the interview. For example, one participant was described as 'mischievous' and 'fun loving', by their family, and this was observed during interactions with them at college and captured in particular pictures taken by the participant. These pictures were further brought to life through the accompanying stories of their family. See Table 2 for an illustration of this. These findings suggest that all three components were important to building a rich understanding of a person's identity.

| D ISCUSS I ON
The Viewing identity as something that is co-constructed between people and their environment and expressed through interaction can account for how we might understand a person who is less able to express themselves through language. Therefore, these findings suggest This approach emphasises the importance of directly involving people with severe and profound intellectual disabilities in research, as well as those closest to them. Inviting others to act as co-researchers, as part of photovoice, was something explored by Cluley (2016). Cluley (2016, p. 43)

| Avenues for future research
The main aim of this study was to trial an innovative methodology and process of analysis to include and capture the views of people with severe and profound intellectual disabilities. Building on the study's findings, two future avenues for research are of particular interest. The first concerns how to evaluate research using this type of methodology. The second considers the use of videography as an alternative to photography.
As noted by Noble and Smith (2015, p. 34), "qualitative research is frequently criticised for lacking scientific rigour with poor justification of the methods adopted" and it is therefore important to identify a process for formally assessing the quality of the method itself. This may include using several researchers so that the analysis process could be cross-validated, or family members and carers could be offered the opportunity to comment on the vignettes produced. Alternatively, researchers could collect pre/post-statements

Photographs taken by participants Family interview data Field note observations
Muddy walks in the countryside Family members described this as "things like mud I mean, she is just like one of those youngsters, who likes, you know, if there is a dry bit of the path and a muddy bit of the path, you know where [she] will be!" Observations included noticing the participants love for the outdoors and choosing to go outside no matter the weather.

Selfies
Family members talked about the participants' love of photographs and them being "a way of him expressing himself…I like seeing him laugh when he takes a picture of himself." The participant was often described as "cheeky" and "funny." During interactions with the participant "I noticed his big eyes and cheeky grin." I also witnessed his cheeky behaviour during a cooking session when he placed the "whole pot of gravy granules in the saucepan" when prompted to put more in.

Pictures of family members and peers
During the interview, the participants' TA B L E 2 The overlap of themes across different methods of data collection from family and carers to explore similarities and differences in the data collected following ethnographic observations and application of photovoice.
Photographs are just one method of involving participants with severe and profound intellectual disabilities in research. However, the photographs themselves are limited by only capturing a fixed moment and it can be difficult for families and carers to remember exactly what was going on beyond this picture when providing narrative accounts. One way of building on this method would be to utilise videography. There are some studies that have started to involve participants with intellectual disabilities in video ethnographic studies (see Kaley et al., 2019). Although, like other studies, they have mainly involved participants with less severe forms of intellectual disabilities since they have been able to participate in interviews whilst watching the videos. Depending on the approach taken, videography may offer the opportunity to walk in the shoes of participants and would not rely on them having to learn to use a camera. Despite this, the challenges remain when it comes to eliciting participants views and perspectives since they cannot provide the narratives themselves (Kaley et al., 2019). Additionally, individuals with physical and visual impairments would also continue to struggle to engage in this type of activity. Whilst it may not solve all the challenges of including people with severe and profound intellectual disabilities in research, it may offer another medium of inclusive research.

| CON CLUS IONS
This research provides further evidence that people with all degrees of severe intellectual disabilities can and should be directly involved in research. It is evident from this study that directly involving people with intellectual disabilities can also influence relationships and quality of life. Attempting to give a visual voice to people with intellectual disabilities and using research to create the opportunity for these voices to be heard can challenge stigmatising assumptions and biases that so often overshadow the lives of people with intellectual disabilities. The methodology used in this project provides one-way researchers can directly involve people with severe and profound intellectual disabilities in research and challenge the idea they are 'less than human'. Moving forward, it is important that researchers continue to develop ways of directly involving people with all degrees of intellectual disabilities in research and develop ways of validating creative methodologies.

ACK N OWLED G EM ENTS
A special thank you to all those who contributed to this project,