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Abstract

Almost half of all Canadians live with sensory, cognitive, or physical impairment due to injury, illness, or ageing. Yet, research investigating the complex relationship between well-being and impairment is limited. Existing research has largely rendered invisible peoples’ experiences of a good life while living with impairment. In response, researchers are calling for interdisciplinary research that integrates new paradigms. Using innovative qualitative and visual research methods, our team will work with 24 women living with impairment as a result of cancer and/or its treatments to explore how creative practices can contribute to new understandings of a good life. Participants will be invited to complete mixed-media arts workshops during which they will create artwork representing their experiences of well-being while living with impairment. After the workshops, each participant will be asked to complete an individual interview about their experiences and their creative work. Next, a rough cut of a film will be produced from the workshop recordings and participants will be invited to provide feedback at a private screening. The research will culminate in a public screening of the film and an exhibit of participants’ work. Audience members (health professionals, students, participants, and the general public) will participate in a discussion following the screening and will be asked to complete a short survey about the event. This research will enhance public understandings of what it means to live well with impairment. In addition, the research will potentially impact health practices through querying dominant biomedical paradigms focused on curative approaches and distress.

Keywords

visual methods arts-based research participatory research film cancer survivorship good life impairment

Popular visions of a good life align with biomedical conceptualizations of health as the absence of illness and disability. However, a large proportion of Canadians—almost 44%—live with sensory, cognitive or physical impairment due to injury, illness, or ageing (Public Health Agency of Canada, 2019). Although impairment is a common and “normal” state of being, public and professional understandings of a good life presuppose an absence of impairment. This has resulted in multiple gaps in knowledge of the experience of a good life with impairment, that is a life containing valued activities, social connection, and personal development beyond the pursuit of perfect health (Wendell, 1996). In response, rehabilitation scholars are calling for increasing integration of the social sciences and humanities in order to better understand experiences of impairment and a good life. Our interdisciplinary research is therefore timely as we are using innovative, creative arts methods to expand upon understandings of a good life, thereby contributing to new perspectives both in rehabilitation and the social sciences.

We begin this paper with an overview of current conceptualizations of impairment and a good life, narrative studies, and wellbeing, as well as the potential of community-based creative practices to explore experiences of impairment. Next, we provide an in-depth description of the qualitative, art-based and community-based research methods utilized throughout this study. We conclude by discussing ethics, rigour, and the significance and implications of this study.

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;

(b) document the social and narrative processes associated with community-based visual arts via the analysis of workshop video recordings;

(c) methodologically explore the role of visual data analysis in understanding creative practices in a community-based setting through the analysis of video recordings and the subsequent production of a 30-minute video; and

(d) disseminate the research findings through a combined video screening and exhibit of participants’ creative work.

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.

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.

Sampling

Workshops are being offered to women who (a) are 18 years of age or older; (b) have completed active treatment for cancer; (c) are English speaking; (d) can consent; (e) are willing to be video recorded; (f) are willing to be identifiable in research products; and (g) are willing to participate in online data collection. We include participants who self-identify as women because an emphasis on women’s experiences is reflected in our previous research programs. Additionally, previous research shows that women need the “permission” afforded by workshops to take the time to engage in creative practices, given their social roles (Thomas et al., 2017).

The desired sample size of 24 participants (12 participants in each workshop series) is based on the pilot study, taking into consideration the logistics of space/materials and the generation of sufficient data. It also allows for attrition of one to three participants, as has been the case in similar research projects. For this first workshop series, we only recruited 4 participants using purposeful sampling (Patton, 2015). We identified potential participants who had previously participated in both workshop series offered during our pilot study. Given the unexpected shift in workshop delivery to the online setting due to the COVID-19 pandemic, we believed participants’ previous experience with visual arts would be beneficial. We reduced the sample size for this series because delivering workshops online was novel to the research team and we expected high demand for technical support for which we had minimal resources. Furthermore, we feared including more participants would diminish the quality of the artistic activities and the visual data collected. The second series will include 8 or more potential participants to increase our total sample and will expand beyond participants who took part in previous research.

Recruitment

During the first series, the PI invited potential participants via email. During the second series, we will recruit participants from a waiting list acquired during our pilot study. If needed, the project will be advertised by a local cancer organization via posters and its website. For both series, after showing interest in the study, the research assistant (RA) schedules a pre-workshop onboarding session with potential participants, as described in the following section, to provide greater details and collect informed consent.

Pre-Workshop Support

Other research suggests that supports such as one-on-one pre-sessions with participants and written instructions can help participants become familiar with the video-conferencing platform and prevent technical issues during online data collection (Archibald et al., 2019; Gray et al., 2020; Kite & Phongsavan, 2017; Lobe et al., 2020). Considering this, we have intentionally included opportunities to provide individualized support for participants and the artist facilitator throughout the study. This was essential in our first series as participants had varying levels of technological skill and were new to the online research environment. Examples of support include a pre-workshop onboarding, supplied materials, informational documents, and rehearsals.

Pre-Workshop Onboarding

We schedule an onboarding session individually with each of the participants via Zoom. During this one-hour session, the RA provides details on the study, gathers informed oral consent (see Appendix A for consent form), provides IT coaching with the participant to ensure smooth functioning during the workshop, and answers the participant’s questions. Additionally, the participant completes a demographic form orally (see Appendix B). Answers to demographic questions are audio-recorded. The RA uses an intake form (see Appendix C) to document which devices participants own to tune into the workshops on Zoom, take pictures of their artwork, and create a separate video recording.

Materials

Once participants’ needs are assessed in the onboarding, we gather all materials needed such as electronic supports (e.g., a laptop stand and a phone tripod) and art supplies (e.g., canvases, paint, and mediums). These materials are packaged in bins for each participant. We then arrange to deliver or have participants pick up materials before the workshops.

Informational Documents

We have also prepared informational documents for participants to consult one week before the workshops. These documents include

• instructions and links to videos we created on how to share files with Google Drive or OneDrive;

• a list of pictures of their artwork that participants would need to take (e.g., a picture of their overall artwork, zoomed-in pictures of specific words, images, and symbols in their artwork) as well as photography tips;

• a comprehensive document with visual images showing participants how to set up their workstation the day of the workshop and set up a tripod to record from their phone; and

• a one-page checklist with reminders for before, during, and after the workshop.

These visual guides complement the information provided to participants during the pre-workshop onboarding and aim to increase participants’ comfortability with the online research setting.

Rehearsals

Before the first workshop series, we planned a rehearsal in Zoom with all research team members to identify potential problems and rehearse workshop delivery. This rehearsal was video-recorded to determine what visuals could be gathered in Zoom and how to maximize the quality of our videos. This rehearsal also enhanced the facilitators’ ease with delivering the workshops in a new setting.

Workshops

We deliver a 2-hour workshop once per week for 4 weeks via Zoom. All workshops are video recorded with Zoom’s cloud recording feature. During the workshop series, each participant records themselves during a full workshop using their phone or tablet and a tripod provided by the research team to collect a high-quality video recording of themselves during the session. Participants’ video data supplement the group recordings on Zoom.

We advise participants ahead of time that two RAs will be available to consult via Zoom, up to 30 minutes before the workshop. During this time, the RAs help review participants’ phone placement on their tripod and their laptop placement for the recordings. We use breakout rooms so that one RA can provide individualized support while another helps participants in the main room. Once the workshop begins, the RAs remain on the call to assist with any issues.

During the workshops, the facilitators—the PI and a professional artist previously involved in several arts/wellness initiatives—guide participants as they create artwork representing their experiences of well-being (i.e., a good life) while living with impairment. At the end of each workshop, the participants share and discuss their work.

The workshop themes are “creating a good life” and “wabi-sabi.” Wabi-sabi is commonly defined as finding beauty in imperfection and transience. In our pilot study workshops, this theme helped establish meaningful connections to experiences of living a good life in the face of impairment and helped to create a safe space as the focus on imperfection alleviated concerns with creating “perfect” art. The use of mixed media ensures that there is a great deal of flexibility with respect to creative processes.

After the workshops, participants also take pictures of their at-home set-up, the art-making process, and their artwork. They share these files via a shared Google Drive or OneDrive folder which only research team members have access to.

Post-Workshop Interviews

Semi-structured interviews are scheduled with participants within a month of the last workshop to help ensure adequate recall. The in-depth interviews are approximately one hour in length and audio-recorded using Zoom’s recording feature. The interview guide (see Appendix D) includes open-ended questions encouraging participants to reflect on their artwork and its relationship to a good life or their cancer experience. Examples of questions asked include, “Tell me more about your creations. Do they represent your experiences with cancer? Do you have any titles/what title would you give to these pieces?” and “Was art-making helpful in reflecting on aspects of a good life for you?”

Data Analysis

Verbatim transcripts from the workshops and interviews will be checked and cleaned against the sound files. Photographs of participants’ artwork will be compressed and inserted into the transcripts which will be read holistically and line by line to extract significant statements. We will analyze the video data simultaneously, beginning with repeated viewings of the video. Next, detailed logs will be generated from video clips using Final Cut Pro (video editing software), creating an efficient yet detailed way to work with the video data within NVivo 12 (qualitative data analysis program). We will follow established guidelines for interpretive description studies (Thorne, 2016) and processes used in our pilot and previous studies. Significant statements and actions connected to well-being, creativity, social processes, and narrative will be used to generate codes, which will create a schema within NVivo to be reviewed and modified by the whole team. The resulting thematic categories will then be collapsed into thematic clusters to create a visual model, reflecting the research focus on a good life while living with impairment (Objective 1). The model will be used to inform video production (Phase II) to explore participants’ responses/interactions, as well as facilitators’ roles (e.g., suggestions, prompts, and ideas offered) in order to generate knowledge about the social and creative processes associated with conveying ideas and experiences associated with a good life (Objective 2).

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.

Video Screening and Art Exhibit

Once the video is completed, we will organize a combined video screening and exhibit of participants’ artwork selected for display (Objective 4). Audience members are expected to consist of participants, others living with impairment, family members, health professionals, and students in rehabilitation, nursing, and social work. The screening/exhibit will be held at a local art gallery or online depending on public health and research regulations given the COVID-19 pandemic. Following the screening, if they wish, the audience will also have the opportunity to fill out a short survey (see Appendix E) to elicit responses to both the video and the exhibit. Before completing the survey, the PI will verbally share information relevant to implicit consent (see Appendix F). The survey will consist of open-ended questions (e.g., I liked, I learned, and one question I have is). Afterwards, as is typically done for exhibits of community-created art, the audience members will be invited to participate in a discussion led by the PI. To support knowledge dissemination efforts, the video will also be freely available to the public on YouTube.

Ethics

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

Consent

In the first phase, all participants are provided with a consent form, detailed information about the study and an opportunity to ask any questions before providing informed oral consent, which is recorded during a Zoom call with a RA. During the second phase, participants in the audience at the exhibit/screening will be provided (visually via a projection and orally via the facilitator’s explanations) with information on the study and what the discussion and survey will entail. Audience members will have the opportunity to ask any questions and to take a picture of the information projected to keep for their records. The participants will be made aware that the completion of the survey implies their consent.

Privacy

In the first phase, participants are informed that they may be identifiable in the video created with the workshop video recordings, by their first name across all data and research products, and finally by their artistic signature on their artwork. Given the nature of group work and workshop delivery, absolute confidentiality can never be guaranteed. However, participants will have the chance to review the video during the private screening of the rough cut. At this point, they will be asked to orally approve of the video and their approval (or request to be removed/edited out of the video) will be audio recorded.

To ensure the privacy of non-participants as participants are recorded in their homes during the workshops, we recommend that participants place their set up for the workshop in a private place in their homes. We instruct participants to not have family/household members on camera. If there are parts of the video where family/household members are identifiable, they will not be included in research products.

The audience survey in the second phase will not collect any identifying information.

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.

Footnotes

Acknowledgments

We thank Jinane el Hage for her assistance in editing and formatting the manuscript.

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 in part by a Social Sciences and Humanities Research Council of Canada Insight Grant [435-2020-0175] and the Canada Research Chairs Program.

ORCID iD

Alysson Rheault

Supplemental Material

Supplemental material for this article is available online.

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Supplementary Material

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

Abstract

Keywords

Current Conceptualizations of Impairment and a Good Life

Narrative Studies and Well-Being

Community-Based Creative Practices

Pilot Work

Study Objectives

Explanation and Justification of Method

Phase I

Sampling

Recruitment

Pre-Workshop Support

Pre-Workshop Onboarding

Materials

Informational Documents

Rehearsals

Workshops

Post-Workshop Interviews

Data Analysis

Phase II

Video Screening and Art Exhibit

Ethics

Consent

Privacy

Rigour

Significance and Implications

Footnotes

Acknowledgments

Declaration of Conflicting Interests

Funding

ORCID iD

Supplemental Material

References

Supplementary Material