Toward New Understandings of a Good Life for People Experiencing Impairment: An Art- and Community-Based Research Protocol

Current Conceptualizations of Impairment and a Good Life

Contemporary research on chronic impairment has been dominated by discourse suggesting that life with impairment is “lesser than” and requires normalization to ensure quality of life (Gibson, 2016). Rehabilitation research tends to be more focused on the difficulties of living with impairment rather than broader human issues such as identity, interconnection, and growth (Miller-Keane & O’Toole, 2003; Playford et al., 2009). While biomedical conceptualizations are key to medical advances, the absence of a broader understanding of life with chronic impairment places people at risk for an all-consuming search for a cure that does not exist. The current biomedical focus crowds out imaginings of a rich life, with thoughts that normalization precedes quality of life (Gibson, 2016). These attitudes permeate rehabilitation, so that dominant rehabilitation discourses reflect biomedical foci in the emphasis upon “falling bodies and atrophied muscles” (Abrams, 2016, p. ix), rather than how one may pursue a good life. This leads to care focused on fixing rather than living well.

At a societal level, biomedical perspectives generate limited knowledge about living a satisfying life with chronic impairment. For instance, those experiencing illness are subject to “othering” discourses that promote stigma, isolation and exclusionary social policies (Walton & Lazzaro-Salazar, 2015). When people are born with or develop an impairment, they find themselves in a world that is not supportive of their pursuit of a good life, a world that contains few public images of such a life and no tools that may help them develop a personal image of living well (Gibson, 2016; Moola et al., 2020).

An emphasis on chronic illness as a linear experience to be problem-solved by health professionals is not limited to biomedical discourse and practices, however. In similar ways, the predominant problem-focused lens in social sciences research has resulted in limited engagement with positive life experiences, such as happiness (Thin, 2014). For example, women with cancer who participated in one of our team’s studies of creative writing did not report high levels of distress quantitatively despite living with cancer-related impairments (Thomas et al., 2017). Aspects of well-being, such as joy and flow, were experienced in the writing workshops (as they were in our pilot study), but participants reported there were few, if any, resources outside of the workshops that facilitated these aspects of well-being. This reflects an emphasis on the measurement of well-being and happiness as an individually determined psychological state (Morrison & Thomas, 2015; Thin, 2014). In contrast, Cieslik (2015, 2016), for example, looks to notions of happiness as a social process that arises from a reflexive engagement with life’s challenges and hardships. As such, experiences of impairment, bereavement, and disappointment “compel us to ponder the meaning and significance of things that we value” (Cieslik, 2016, p. 45). In summary, biomedical or cure-based discourse permeates both individual experience, policy, and the education of health professionals even though there is increasing evidence of the limitations of such discourse for understanding impairment and well-being. Such limitations are acknowledged in recent rehabilitation and social sciences scholarship which calls for innovation in research methodologies.

Narrative Studies and Well-Being

Narrative studies have a solid foundation in the social sciences and humanities. It has been well-established that people make sense of life transitions, such as those associated with the onset of impairment, through storytelling and the ways in which they are socially positioned (Thomas et al., 2019). Bury’s theory of “biographical disruption” is particularly relevant to our research and has been used to describe the disruption that illness can have on a person’s life circumstances and self-concept (Bury, 1982). For instance, the concept of disruption has been used to explore “identity transitions between health and illness” through cancer diagnosis, treatment, and follow-up (Lockock & Ziebland, 2015, p. 593). While narrative theory has been widely discussed within the context of chronic illness, few researchers have explored the relationships between narrative and creative practices. Their relationship to well-being also remains underexplored, particularly within the context of community-based creative practices, such as visual arts.

Community-Based Creative Practices

While this research domain is relatively new, there is evidence to suggest that such creative practices include social processes and other aspects of well-being that merit further exploration. Social relationships (e.g., experiences of belonging) may be connected to well-being; however, researchers in the social sciences have focused almost exclusively on relationships between individuals instead of interaction (Ellis, 2009; Sani, 2012). One exception is a study in rehabilitation by Cutler and colleagues (2016) that employed Bury’s biographical/repair framework to explore relationships within a peer support group for adults recovering from brain injury. The group experience provided participants with personal validation, social connection, and information sharing opportunities. Likewise, art-making among peers with shared experiences may provide a safe, social space to express emotions, transcend experiences, and adapt illness narratives (Collie et al., 2006; Predeger, 1996).

McNiff (2008) argues that the arts provide new ways of thinking about identity and impairment: “the use of our hands, bodies, and other senses as well as the activation of dormant dimensions of the mind, may offer ways of solving and re-visioning problems that are simply not possible through descriptive and linear language” (p. 33). For example, by combining audio diaries and interviews with photography, Gibson and colleagues (2013) explored disabled young men’s identity practices without requiring participants to fully articulate these practices, thereby facilitating conversations about potentially sensitive topics. Visual images also encourage reflexivity and storytelling because they are multi-layered and evoke stories (Weber, 2008). For instance, in their ongoing storybook study for young people living with cystic fibrosis and muscular dystrophy, Moola and colleagues (2020) gathered original artwork and written narratives from participants to allow participants to “have their stories heard and affirmed in contemporary cultural spaces” (p. 1). Thus, there is a nascent body of research suggesting that community-based creative practices include social processes and other experiences that facilitate aspects of well-being during transitions associated with impairment. However, these phenomena are not yet well understood, nor have researchers extensively explored the potential of visual research methods to generate knowledge about such experiences.

Pilot Work

Our team’s research program incorporating several interdisciplinary studies of creative practices in community settings as well as a successful pilot study exploring visual arts for women with cancer have led to the current Creating a Good Life (CGL) project (Hamilton et al., 2018; Ranger et al., 2019; Thomas & Hamilton, 2016; Thomas et al., 2017, 2018, 2019). While the pilot study generated themes relevant to understanding life with impairment, the study was not focused on a good life. Nevertheless, a striking and unexpected finding was the extent to which art prompted spontaneous discussions of aspects of well-being such as freedom, inspiration, joy, and peace—phenomena that are difficult to put into words and that are largely absent from existing literature. Further, the analysis of the pilot data also indicates that art made emotions tangible through creative practice. For example, participants made connections between the textures they used, such as smooth fabrics versus coarse molding paste, and different emotions. As another example, participants developed “work arounds” when materials would not “cooperate” which may parallel workarounds developed while living with impairment. However, because the pilot study was limited to audio recordings and smaller sample size (n = 11), our understanding of such processes is not comprehensive or well-documented. Therefore, the CGL project was a logical next step as it incorporates a larger sample and visual methods (video) which will help to illustrate social and narrative processes associated with well-being. Such processes may include gestures, facial expressions, non-verbal signs, and the ways in which artifacts and tools are manipulated or shared (Mondada, 2006).

Study Objectives

The first main goal of the CGL project is to document and describe how creative practices can contribute to new understandings of a good life while living with impairment. The second is to explore the potential of visual methods as an innovative approach to generating new knowledge about this topic. Building upon our pilot work, we aim to

(a) explore experiences with visual arts and their relationships to various aspects of a good life via mixed media workshops and in-depth interviews;

Explanation and Justification of Method

The CGL project utilizes a qualitative, art-based and community-based research design. Art-based research is defined as “the systematic use of the artistic process […] as a primary way of understanding and examining experience by both researchers and the people that they involve in their studies” (McNiff, 2008, p. 29). While various art forms can be utilized throughout the research process, we chose visual methods because of their ability to capture “the tacit, ‘seen but unnoticed’ character of human activity and social organization” and to highlight “the interpersonal” (Bell, 2010, p. 519). In the context of the CGL project, visual methods such as mixed-media art enable us to explore aspects of well-being from participants’ perspectives and access phenomena otherwise unavailable via words (Leavy, 2009; Weber, 2008).

We also incorporate elements of community-based participatory research (CBPR) given the emphasis that CBPR places on community resilience, resourcefulness, and positive growth, which are all components relevant to the CGL study (Coughlin et al., 2017). CBPR is an orientation to research that facilitates collaboration between researchers and community members (Wallerstein & Duran, 2006), showcasing each party’s strengths and insights for “framing health problems and developing solutions” (Coughlin et al., 2017, p. 2).

The combination of art-based and community-based approaches is particularly well suited for the CGL study given that—as our previous studies have shown—participatory arts workshops can empower participants to generate data and create their own visuals (Ranger et al., 2019; Thomas & Hamilton, 2016; Thomas et al., 2017), thereby increasing the visibility of experiences of a good life while living with impairment. In addition to creating a meaningful experience for participants (Bell, 2010), visual products can promote accessible knowledge translation to a wide range of audiences in an informative, engaging, evocative, and esthetically powerful way (Leavy, 2009; Mitchell & Sommer, 2016; Weber, 2008). As such, the use of visuals during the public video screening and exhibit of participants’ artwork may help educate the wider public, such as caregivers and health care professionals, on the topic of wellbeing and impairment.

Our project consists of two phases (see Figure 1 for an overview). Mainly, the first phase involves workshop delivery and interviews with participants. The second phase includes video production as well as a public screening of our video and exhibit of participants’ artwork.

OPEN IN VIEWER

Figure 1.

Overview of both phases of the research project.

Phase I

Phase I addresses the first two research objectives and encompasses the delivery of two series of visual arts (mixed-media) workshops. The first series of workshops was delivered from January to February 2021. The second series has not been delivered yet but will follow the same format as the first series.

Phase II

The second phase of our study addresses Objectives 3 and 4. We will begin by producing a video based on key themes emerging from the analysis completed in Phase I, using the workshop video recordings. Next, participants will be invited to view and discuss a rough cut of the video. As participants discuss the video and their experiences, they will add another layer of reflexivity to the analysis associated with the methodological exploration of visual data (Objective 3). This session (rough cut screening and discussion) is expected to take 3 hours and will be audio-recorded and transcribed. The transcript will then be analyzed to support video editing.

Ethics

Before data collection, the study underwent an ethics review and received approval from the University of Ottawa’s Research Ethics Board.

Rigour

We use established qualitative criteria such as credibility, analytic logic and interpretive authority to ensure rigour (Thorne, 2016). Credibility is supported by data collection from multiple sources such as workshop discussions, interviews, as well as participants’ artwork and feedback in the second phase of the study. Analytic logic, the process by which the researchers’ reasoning is made explicit, is supported by creating an audit trail. Clear records of the raw data are kept as well as reflexive notes. These notes help to confirm the research team’s interpretations of the data as the analysis progresses. We sustain interpretive authority, which refers to the trustworthiness of the researchers’ interpretations, by following independent coding alongside team discussions throughout data collection and analysis. Participants’ feedback on the video in the second phase of the study ensures participants are included in data interpretation and that findings are grounded in the data.

Significance and Implications

The knowledge generated by this research will contribute substantively to what is known about well-being (i.e., a good life) while living with an impairment—a crucial focus given the number of Canadians living with chronic illness. The project also addresses calls for more comprehensive approaches to rehabilitation and health care, representing a shift from cure-focused and deficit-based discourses to one that more holistically captures the range of experiences associated with impairment. Additionally, the study results will inform future methodological developments in visual research methods, furthering exploration of the intersections between narrative inquiry and video. Canadian researchers have developed promising programs of research in arts-based inquiry, but to date, Canada does not have a network of scholars comparable to those established in the United Kingdom and the United States. There is some movement toward the establishment of such a network, but more research and capacity are required to strengthen this field in Canada. Finally, the unique approach of an art exhibit/video screening is expected to have a high impact, given the novel approach. Findings will be conveyed in ways that will supplement and enhance traditional approaches to knowledge mobilization. The availability of the video on YouTube will ensure that findings are accessible not only to researchers and policymakers, but to those living with impairment, their families, and their communities.