Paediatric Voices in Rehabilitation Research: Art as a Communicative Tool

Topical Commentary

By Stephanie Posa

The Tri-Council Policy Statement (TCPS): Ethical Conduct for Research Involving Humans is a joint policy crafted by Canada’s federal research funding agencies, which outlines ethical practices for conducting human-centred research (1). Within the policy’s overview of fairness and equity in research participation, it is emphasized that children have been historically and wrongly excluded from research (1). Being young is often tied to the assumption that one lacks the capacity to make informed decisions and, thereby, the ability to effectively participate in research (1-3). These TCPS ethical guidelines uphold that such exclusive perspectives marginalize the voices of children and youth in research, and that such voices are central to advancement of equity and knowledge in research (1,4).

Despite the recognition that paediatric research should amplify the voices of youth, the majority of scientific methods used in the field continue to privilege adult modes of communication above those of children (5). Purely literacy-based research methods, such as interviews and questionnaires are most prominent and maintain the centrality of language and verbal communication, which in turn, serves to exclude various paediatric participants (2,6,7). Indeed, the use of research designs that limit the expression of participants during the research process is considered to be a form of exclusion by researchers well versed in the field of childhood learning and pedagogy, such as Blaisdell (2) and Wall (6).

To increase accessibility, rehabilitation researchers may employ data collection methods that facilitate, rather than stifle, the communicative styles of diverse children and youth (2). This article will explore arts-based research (ABR) as one such methodology in rehabilitation research that is aiming to privilege the voices of children and youth alongside those of adults. Specifically, it will highlight how ABR may address the communicative limitations of literacy-based research methods that are still prominently employed by researchers.

Being young is often tied to the assumption that one lacks the capacity to make informed decisions and, thereby, the ability to effectively participate in research “

Limitations of Literacy-Based Research Methods

Driessnack and Furukawa (5) conducted a systematic review to explore the use of arts-based data collection methods with paediatric participants in health research. Findings revealed that these creative methodologies are lacking in health research, as only 19% of included studies used arts-based techniques (5). Instead, literacy-based research methods that uphold conventional verbal and textual exchanges as the basis for communication between the researcher and participant remain prominent (2,6,7). Such methods include focus groups, interviews and questionnaires (6).

The reliance on literary-based research methods may lead to misunderstandings and inaccurate responses from children and youth. For example, children are susceptible to answering questions in ways that aim to “please” adult researchers (8), and have difficulty responding to retrospective questions that rely on memory and reflection (9). They are also more likely to interpret the semantics of questions too literally (10). For example, Holoday and Turner-Henson (10) describe a scenario in which children under the age of eight were asked if they had been on a school field trip (10). They responded negatively to the question, as they had been on what they termed a class field trip (10). Thus, dependence on literacy-based research methods can yield inaccurate responses from children and youth and, when used in isolation, may prevent children from meaningfully participating in research (2,6).

Research suggests that inaccessibility particularly occurs in scenarios where there are:

  1. Developmental, cognitive or social difficulties among participants: Research designs that focus on textual and verbal interactions alone are often exclusionary to children with certain developmental and cognitive conditions that limit their capacity to communicate through speech alone (11), such as autism spectrum disorder (ASD). Furthermore, very young children are regarded as being “pre-social”, meaning that they have not yet developed a formal set of social habits and instincts (12). It may be inferred then that methodologies relying heavily on social interaction (e.g., focus groups, interviews) may be difficult for children to navigate.
  1. Youth participants from minority groups: The authoritative presence of researchers can often cause feelings of limited power among children (6), especially for members of ethnic or racial minority groups (1, 12). Thus, research methods that uphold more conventional exchanges may serve to re-assert the dominance of the researcher as a powerful and authoritative presence leading the research process (6).

Artful expressions, on the other hand, have been described as a child’s “first literacies” (13). This article therefore argues that introducing artful expressions as an approach research can compliment the literacies that are absent or continuing to develop in young research participants.

Image source: Sigmund (unsplash)

Enter Arts-Based Research

Arts-based research is a qualitative research methodology that seeks to generate or disseminate knowledge through the art–making process (14). Art-making refers to the creation of various art forms, such as visual art, dance, music and theatre during any point of the research process (14).

ABR enhances understanding among participants as the decision making process in artistic creation is inherently knowledge producing. Thereby, individuals may learn that they have gained an understanding of artistic principles, or of research phenomena (15). ABR is also highly regarded for broadening accessibility, as art-making is not restricted to the realm of artists. Conversely, all participants, including children, are seen as capable knowledge makers (15). An example of arts-based research is Project Re-Vision, a research project, in which participants were asked to take part in the artistic process of creating their own digital stories using images, audio clips and videos that they composed themselves, and thereby highlighted the lived experiences of members of the marginalized individuals with disabilities (16).

Art Therapy in the Rehabilitation Science

ABR can often be confused with art therapy, however the two disciplines are distinct. Art therapy is a clinical service that uses the process of art making to help inspire, motivate, or promote individual well-being, and to confront maladaptive beliefs, experiences and behaviours (17).

In the context of rehabilitation, art therapy has been used among children and youth living with developmental disorders such as autism, illnesses such as cancer, as well as addictions to various substances (18-20) For example, in a study by Altay, Kilicarslan-Torunder and Sari (19), youth (aged 9-16) living with cancer completed a five-day program in which they were asked to create drawings about their hospitalization, and to elaborate upon the drawings with written and verbal descriptions. Scores on the State Trait Anxiety Inventory revealed that children who received the intervention experienced reduced anxiety compared to their baseline scores (19).

Various rehabilitation professionals have also employed art therapy to improve occupational performance, motor functioning, and psychosocial well-being (21). The field of occupational therapy has historically been rooted in the creative tradition. The field began the arts and crafts movement of the 20th century, which saw creative exercises such as painting and woodworking as ways to engage individuals with psychiatric illnesses and injuries during the war (21). Arts based approaches are still common in the of field occupational therapy. A recent web-based survey conducted in Sweden showed that 75% of occupational therapists integrate creative therapies when conducting client assessments, ranging from crafts such as woodworking and painting to less conventional activities of gardening, baking and visiting museums (22). Unlike arts-based research, the purpose of art therapy is not to generate knowledge through research, but rather to treat individuals through applied therapy.

In addition to arts use within clinical rehabilitation, art is increasingly being integrated into rehabilitation research. The next two sections will highlight two visual arts-based studies in the field of rehabilitation science.

Image source: Pixabay (pexels)

Arts-Based Research in the Rehabilitation Sciences

Portraiture Case Study

Martin (23) used the arts-based method of Portrait Drawing Assessment (PDA) to examine how children and adolescents between the ages of 6-20 years with ASD engage in the process of drawing faces. ASD is a neurodevelopmental disorder associated with social and communicative impairments, which may manifest in the form of patterned and repetitive behaviours (23). Individuals with ASD can reportedly experience difficulties in integrating sensory information to accurately “read” and interact with the faces of others (23).

The method of PDA applied by Martin involved asking children with ASD to draw the face of the study facilitator using a standardized set of drawing materials (23). During this process, the drawing features and behaviours were documented and scored according to the Portrait Drawing Assessment (23). This assessment evaluated how strongly certain artistic techniques were used (i.e. shading, colouring, line quality), as well as whether participants exhibited certain behaviours (i.e. eye contact, verbal communication) (23). Despite differences in the quality of drawings and ability to follow instructions, findings revealed that children and adolescents with ASD were rated as being more “interested/focused,” and engaged in more active dialogue during the drawing activity compared to their neurotypical peers (23).

It is worth noting that although the ASD population may find verbal communication frustrating, overwhelming, or too direct, (23) participants used visual features and symbols to stimulate their speech and dialogue. Thus, this study shows how arts-based alternatives offer children with ASD an adaptive means of expressing themselves, despite experiencing difficulties in verbal communication. Furthermore, this study also exemplifies the notion of neurodiversity (24). That is, children with ASD possess behavioural, and cognitive differences, rather than deficits, that may require active accommodation (24). This study exemplified how the use of creative, rather than conventional methodological approaches allow us to better understand the strengths and communicative preferences of this population.

Photovoice Case Study

In a study by Valenzuela et al. (12), researchers used photovoice to explore the experiences of youth with sickle cell disease (SCD)—a genetic condition that results in complications to the renal and pulmonary systems, causing chronic pain and delayed pubertal growth. Photovoice is qualitative research methodology in which participants use photography to express their thoughts and feelings during the research process (12).

In this study, participants, aged 8 to 17 years old, were instructed to photograph freely, in order to convey their experiences living with SCD (12). Participants then engaged in collective discussions about the content/interpretations of certain photographs. Findings revealed that photographs allowed children to express and discuss the impact of their SCD, the importance of maintaining a sense of normalcy, as well as their relationships with family and friends (12). Understanding the impacts of disease has important implications for rehabilitation by uncovering aspects of lived experiences that may warrant therapeutic intervention.

SCD is particularly common in racial and ethnic minority groups (12). Thus, youth with SCD may experience feelings of diminished power, especially when verbal communication is the basis for the exchange of ideas and information between the researcher and participant (12). Photovoice may be used to mitigate feelings of diminished power, as it allows participants to construct knowledge using mediums that are visual and symbolic rather than linguistic. By granting participants photographic freedom, this research instilled participants with a sense of self-efficacy and self-awareness that ranges beyond the semantic traditions upheld by literacy-based research methods (12).

Photovoice may be used to mitigate feelings of diminished power, as it allows participants to construct knowledge using mediums that are visual and symbolic rather than linguistic.”

Conclusion

Participatory exclusion of youth remains an ongoing issue in field rehabilitation science, as inaccessible research methods remain prominent in the field. Literacy-based research methodologies such as interviews and questionnaires can marginalize the voices of children who are still undergoing cognitive and social development. The use of ABR in rehabilitation science promotes the equitable inclusion of youth, as it decentralizes textual and verbal expression as the hallmarks of participant contribution. This approach should be further encouraged in rehabilitation research as it emphasizes symbolic and pre-verbal modes of communication, allowing diverse paediatric populations to reclaim agency, interest, and engagement in the research process.

Acknowledgements

Featured illustration by Cassie Ren for rehabINK.

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

Posa S. Paediatric Voices in Rehabilitation Research: Art as a Communicative Tool. rehabINK. 2021:10. Available from: https://rehabinkmag.com

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