Finding pathways to belonging for young adults with intellectual and developmental disabilities: Socio-spatial mapping as an arts-based methodology

Original Research

By Tania Ruiz-Chapman & Rebecca Renwick

Pathways to Belonging (P2B) is a government-funded qualitative research project that uses an arts-based methodology to study how young adults (YA) (ages 18-35 years) with intellectual and developmental disabilities (IDD) come to feel and experience a sense of belonging (1). The project aims to uncover the contexts and conditions that foster and promote a sense of belonging for YA with IDD, in part, through using a socio-spatial mapping methodology (2,3) which is highlighted in this article.

Socio-spatial mapping is an arts-based, visual methodology that involves creating a representation, drawing, or map in which each study participant depicts social and spatial aspects of their lived experiences relating to a specific topic or research question (2).  A key advantage of socio-spatial mapping methodology is that it can elicit expression and in-depth discussion of each participant’s complex lived experiences.

In the P2B project, we ask each participant to create a ‘map’ or picture of the people, relationships, places, activities, strategies, and objects that are related to how a sense of belonging is fostered (or hindered) for them and how they come to feel like they belong.

Background

Rehabilitation researchers, professionals, and programs have employed a social inclusion approach as a means of helping people with IDD participate in their communities. After decades of focusing on social inclusion, many people with IDD are often more present than engaged in community life (4). A more recent and promising approach is to focus on promoting a sense of belonging (5) for people with IDD.

Research on belonging is at a very early stage and there are many gaps in the literature, most notably for YA with IDD. The gaps in the research include: (a) how do YA with IDD come to feel that they belong (or not belong) – what is the process; (b) what conditions and contexts contribute to this process (e.g., relationships, places, activities); and (c) what are the perspectives of YA with IDD on how they come to feel that they belong, or not? (5)

P2B seeks to address these knowledge gaps by asking these questions to a group of participants, as well as the family members and community service organization professionals who support them. The P2B project builds on earlier research, the Voices of Youths (VOY) project (5,6), which identified a theoretical framework of belonging for teens and YA (ages 13-24 years) with IDD. The framework developed by the VOY research encompasses four aspects of belonging based on the lived experiences and perspectives of youths:

  1. Interacting with similar people (e.g., others with IDD, people of the same socio/ethnic/religious background, and people who share similar values and interests);
  2. Having social relationships;
  3. Negotiating meaningful roles in their communities;
  4. Finding a good fit between what youths want and expect for themselves, and what others (e.g., parents, community) want and expect for them (5,6)

However, this framework did not fully illuminate how the process and sense of belonging (or not) come about for youths (5). It also did not include information from other individuals who likely play a key role in this process, namely, family members and professional service providers.

Capturing multiple perspectives in answering these research questions will help to identify and understand areas of agreement and overlap, and capture points of tension and synergistic processes important to fostering and promoting these YA’s sense of belonging (or not). This enhanced understanding can in turn be utilized by rehabilitation science professionals to help create and foster places where YA with IDD feel they can belong and therefore thrive.pexels-photo-1231230

Using Socio-Spatial Mapping in the P2B Study

Each YA participates in an individual, video-recorded socio-spatial mapping session and in an additional interview, while family members and service providers each take part in one audio-taped interview that is shaped by the data collected from the YA.  Participants are each asked to create a visual representation of belonging through drawing and attaching images and photos to their maps.

Visual methods are useful when working with YA with IDD because they serve as tools upon which the individual can reflect (2). Moreover, the interviewer may ask follow-up questions about the participants’ map. Thus, each completed map can offer more meaningful information related to our research questions (1).

Visual methods also allow participants to express themselves more diversely to bring out ideas not easily accessed through a traditional interview (2,3). The maps that participants produce guide the interviewer through the second session (a semi-structured interview), such that the images, objects, and words depicted on the map can serve as prompts or cues to conducting a guided conversation about how the participant came to experience a sense of belonging (or not belonging).

Discussion

According to Bagnoli (2), “arts-based research is an ‘umbrella term’ that includes a variety of different methodologies employing some art form as a method.” For the P2B project, we utilize a visual, arts-based methodology with projective techniques, meaning that we encourage YA participants to express their own take on the content and organization of their own socio-spatial maps.

For us researchers to better understand the process of map-making, we have made our own socio-spatial maps (Figure 1). The end results differ in content, organization, and artistic style based on researcher experiences, self-expression, and artistic abilities. Such diversity in resulting maps is anticipated for participants who will also have individual differences.

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Figure 1. Examples of two socio-spatial maps created by the researchers.

We engaged more deeply with the ideas presented on the participants’ maps, by conducting a semi-structured interview with each participant. It is therefore, “not the drawings as such, that constitute the data, but the whole process of their production.” (2) Yet, for this project, the drawings themselves do serve as important data to be interpreted, coded, and examined along with data from the other sources described above.

Through this socio-spatial mapping activity, we seek to engage YA with IDD  with their experiences and thoughts concerning belonging. Belonging is not as simple a concept as it may seem at first. We seek to uncover the nuances of how YA with IDD come to a sense of belonging, according to their own understandings.

Furthermore, “the use of visual and creative methods can generally facilitate investigative layers of experience that cannot easily be put into words.” (2) This benefit of socio-spatial mapping may be particularly important for partially- and non-speaking participants and those with limited vocabulary.

The utility of socio-spatial mapping can be taken up by rehabilitation science as it can uncover thoughts and feelings which are not always evident even to the participant. Rehabilitation science professionals and researchers can therefore have deeper insight into their clients, patients, or participants’ perceptions, feelings, struggles, or traumas on a variety of themes beyond ‘belonging.’

It is important to note that not all participants will be able to engage in the same type of map-making. For example, due to sensory issues or varying ability to draw or cut and paste, some participants may prefer to create a digital socio-spatial map. We are considering the value of offering this option by encouraging participants to use a computer tablet to create their map. Although we want to avoid influencing participants’ responses, we will provide stock images from among which participants may choose items to add to their map. This stock images option may also encourage participants to think about other items to include.

Overall, the goal is to create a space and activity that allows participants to be creative and expressive. The interviewer will foster this conducive environment while prioritizing accessibility, which includes being mindful of the wording of questions for participants.  Therefore, we have given considerable attention to ensuring that instructions, guidelines, questions, and consent forms associated with the mapping activity are presented in clear, plain language, such that diverse participants are able to understand and engage as fully as possible in the research. For example, we offer other terms to help participants think about belonging by asking them:  What people/places/activities/things make you feel safe/welcome/accepted/like you matter? Where do you feel important/needed? What person/ place/activity makes you feel like you belong the most/belong sometimes/not belong at other times?

Ultimately, we prioritize developmentally appropriate approaches and are guided by the participants themselves to create these approaches. By prioritizing accessibility in rehabilitation science research, participants’ voices are better acknowledged. Participants are recognized as having expertise over their own lived experiences.

By prioritizing accessibility in rehabilitation science research, participants’ voices are better acknowledged.

Conclusion

Arts-based approaches provide participants the “time and opportunity to tap into their internal, sensory cues and then use these cues to organize their thoughts before they are asked to share them.” (7)

When engaging with YA with IDD, the time and space for mapping facilitates the interview process and helps get to the essence of what participants seek to articulate. This benefit is especially important when working with YA with IDD who have diverse language skills and/or who may be non-speaking.

The findings from the arts-based socio-spatial mapping used in the P2B project can help inform future work in rehabilitation by researchers, service professionals, and program developers, by shifting the focus from social inclusion to pathways to belonging for YA with IDD.

Acknowledgments

Support for this project is provided through funding from the Social Sciences and Health Research Council of Canada.

Featured illustration by Caitlin Chang for rehabINK.

To refer to this article, it can be cited as:

Ruiz-Chapman T, Renwick R. Finding pathways to belonging for young adults with intellectual and developmental disabilities: Socio-spatial mapping as an arts-based methodology. rehabINK. 2019;6. Available from: https://rehabinkmag.com

References

  1. Pathways to Belonging [Internet]. [cited 2018 December 8]. Available from: https://pathwaystobelonging.ca/
  2. Bagnoli A. beyond the standard interview: the use of graphic elicitations and arts based methods. Qualitative Research. 2009;9(5):547-570.
  3. Emmel N. Participatory mapping: an innovative sociological method. Real Life Methods. UK: University of Leeds; 2008 (Report and toolkit).
  4. Milner P, Kelly B. Community participation and inclusion: people with disabilities defining their place. Disability & Society. 2009;24(1):47-62.
  5. Renwick R, DuBois D, Cowen J, Cameron D, Fudge Schormans A, Rose N. Voices of youths on engagement in community life: a theoretical framework of belonging. Disability & Society. 2018 (under review).
  6. From the margins: voices of youths with disabilities, on friendship, inclusion and quality of life [Internet]. [cited 2018 November 8]. Available from: https://voicesofyouthresearch.com/
  7. Driessnack M, Ryoko F. Arts based data collection techniques used in child research. Journal for Specialists in Pediatric Nursing. 2011;17:3-9.