“All I need to know, that you know, that within my body there is me”/ Michaela Psaila-Savona in conversation with Amanda Levey

Introduction

I embarked on this research journey filled with trepidation, as art-based research (ABR) was foreign to me. Weighed down by preconceived ideas of what research entailed, I feared creative expression would be suppressed by the rigid structure of scientific research. To resolve this dilemma, I turned to books published by Shaun McNiff (2013) and Patricia Leavy (2018), with their words providing encouragement and guidance. McNiff (2013) notes that ABR uses artistic expression as a primary mode of enquiry to understand and express individuals’ experiences. Furthermore, having an art background, I understood that art can be used to promote healthy expression, and challenge and highlight new ways of thinking (Leavy, 2020). Insights from the ABR literature gave me the confidence to write authentically and to use my lived experience of artistic expression as a springboard for this research (Leavy, 2018).

As both an artist and creative arts therapist, following the ABR approach enabled the creation of a platform where a participant’s and my lived experiences of cancer could be voiced and studied. Hopefully, by communicating such experiences, the reader may ultimately gain knowledge about the importance of ABR and art therapy practices in the long-term treatment of cancer patients (Kapitan, 2010; Link, 2013). These practices may assist non-verbal expression to explore, find insight and make meaning of individuals’ lived experiences (Leavy, 2020).

Cancer refers to any cancerous disease that occurs at any stage during a person’s lifetime, affecting any part of the body (Geue et al., 2010), and is considered a disruptive event with long-term implications on quality of life (Gour & Chaudhary, 2023; Hubbard et al., 2010). For this study, quality of life is defined as “the value assigned to duration of life as modified by the impairments, functional states, perceptions and social opportunities that are influenced by disease, injury, treatment or policy” (Patrick & Erickson, 1993, p.22).

The beginning: A snippet of my cancer experience

I was diagnosed with thyroid cancer at 24 years of age, which required a partial thyroidectomy and lifelong medication. When I was 34 years old, my cancer re-emerged, metastasising to the rest of my thyroid, parathyroids and lymph glands in my neck. After further surgery and a year of treatment, I commenced ongoing check-ups. These occurred religiously every six to 12 months, with in-depth investigations conducted every three to five years. At the time of my second surgery, I became aware that both my father (a doctor) and my surgeon had previously taken a paternalistic stance and withheld information regarding the seriousness of my initial diagnosis. At 44 years old, during one of the in-depth investigations, I was informed by a newly appointed registrar that I had terminal thyroid cancer. After two days of anguish and fear, I was able to contact my specialist, who clarified that the information I had received was incorrect and was meant for someone else. To this day, I still think about the trauma this other person would have experienced upon receiving their tragic diagnosis.

Ten years on, and after years of personal therapy, I can now address the enduring impact these disruptive events have had on my life. They include mistrust of medical professionals, physical changes brought on by high pharmaceutical doses resulting in further medical conditions, anxiety, depression, fear, pain, achievement pressures, a sense of urgency and a foreshortened future, and questioning of my religious beliefs. These experiences were the catalysts for my research study.

Throughout the past 40 years, I have used creativity to deal with the impacts of my diagnoses, as words alone have failed to express how I feel inside. My art practice history has included journaling, painting, sewing and collage, which have given a visual account of how living through these experiences can feel (Bochner & Ellis, 2016). This practice has assisted me to understand issues about myself, my thoughts, my relationships, and my existence in the world.

My cancer experience led me to question whether other women had used art as therapy and how this had impacted their mental health in their post-diagnosis life. Furthermore, I wanted to identify whether there were other commonalities observable between my own experience and the participant’s. I commenced my exploration of current literature to find answers to my questions.

Reviewing current literature

Cancer is a disease that has had an impact on the life of most Australians. By the age of 85, one in two Australian women will have had a cancer diagnosis, with 70% of these women surviving five years or longer post-diagnosis (Cancer Council, 2021). Although cancer survival rates have significantly improved, survivors still experience long-term mental and physical health problems that impact their quality of life (Fenner et al., 2024; National Cancer Institute, 2022; Ross et al., 2022). Furthermore, the potential for cancer recurrence remains a constant threat for survivors, further contributing to their decline in quality of life (National Cancer Institute, 2022; Ross et al., 2022). The disruptions to quality of life have been observed to impact cancer survivors for, on average, five years following cessation of treatment (Green & Young, 2015; Hubbard et al., 2010; Reynolds & Prior, 2006; Salander et al., 2011).

To explore the authentic experiences of other cancer survivors, I sought articles written from an autoethnographic ABR stance, authored by healthcare professionals or artists who are cancer survivors. Although results were limited, a collection of sources was identified (Chansky, 2007; Petrone, 2004; Sibbett, 2005; Wadeson, 2011). In all the literature found, art was used to regain control and personal identity during the author’s cancer journey. For Wadeson (2011), art therapy was an outlet in which she turned to after experiencing helplessness in her cancer journey:

For me, I needed to do something, to be active to oppose my resignation to the tortures imposed upon me. I needed to assert my personhood as I passively underwent frightening, debilitating, and humiliating procedures. Writing and making art were my saviours in times of trouble or pain in the past, so it was only natural for me to turn to them to help me through the cancer challenge to my life. (p.7)

This sentiment was also reflected in Petrone’s (2004) commentary: “this illness has invaded my life, knocked me off balance and made me feel out of control … But I still feel a need to direct my life, to feel this life of mine is still mine” (p. 65). Petrone (2004) turned to art to help communicate his internal sufferings to those around him, “but most of all I need to know that you know that within my body there is me” (p.65). Due to medical professionals being hyper-focused on killing cancer cells, survivors report feeling dehumanised, with the conventional medical system often neglecting their psychosocial needs (Chansky, 2007; Hart, 2010). Consequently, there is a call for healthcare professionals to utilise a more holistic approach, addressing the individual’s body, mind and spirit, in their practice (Winlaw, 2023). Using this approach may lead to improvements in the long-term mental and physical health of cancer survivors. A second theme observed in ABR literature is the frequency of miscommunication between health professionals and patients, thus highlighting the importance of establishing trusting relationships in a safe environment (Chansky, 2007; Furzer et al., 2014; Gilbert et al., 2016; Sibbett, 2005).

Given cancer significantly disrupts the lives of cancer patients, providing them with the tools to process and overcome the trauma of a cancer diagnosis is imperative to their long-term health (Oster et al., 2006; Rieger et al., 2023; Wood et al., 2011). Studies have shown that art and art therapy can be highly beneficial to cancer patients, as they enable them to experience healing, reframing, meaning, and reaffirmation of self (Gilbert et al., 2016; Sabo & Thibeault, 2011; Thomson, 2019). The benefits of art therapy include improved mental health and better quality of life, with some patients also experiencing reductions in their cancer symptoms (Geue et al., 2010; Hertrampf & Wärja, 2017; Nainis et al., 2006; Regev & Cohen-Yatziv, 2018; Zhou et al., 2023). Cheng et al. (2021) found that women with breast and gynaecological cancers who received art therapy had reduced depression levels and an improved quality of life. Furthermore, in women with breast cancer, a reduction in their pain, fatigue and anxiety was also observed. Similar findings were reported by Kievisiene et al. (2020) and Jiang et al. (2020), with art therapy found to significantly reduce anxiety, depression and fatigue symptoms, while also significantly improving the cancer patient’s quality of life. Age has been observed to impact art therapy efficacy, with cancer patients older than 55 years having more successful results in the reduction of depression and anxiety (Xu et al., 2020). It is important to also understand that not all cancer patients are receptive to art therapy. In Nainis et al. (2006), 6% of participants said art therapy had no effect, with 4% saying that they did not like their completed artwork. Given the emotionally vulnerable state of cancer patients, incidents which trigger buried feelings of insecurity may nullify any benefits gained from art therapy (Nainis, 2008). Thus, it is important for art therapists to establish a safe environment which supports the choices and needs of each patient (Nainis et al., 2006, Nainis, 2008).

To advise cancer patients about art therapy, medical professionals must understand that there is a difference between using art for therapeutic purposes and art therapy, as they provide different goals and outcomes for cancer patients (Chandler, 2020; de Witte et al., 2021). Art-making is inherently an expressive process, with individuals who use art for therapy finding it promotes self-esteem and relaxation (Reynolds & Lim, 2007). Conversely, art therapy is a clinical practice conducted by qualified art therapists, for the purpose of safely addressing psychological conditions using visual and symbolic mediums (Chandler, 2020; de Witte et al., 2021; Oster et al., 2006). As cancer patients undergo intense and complex emotions, it is important that an art therapist is present, to help the patient safely navigate the thoughts and emotions evoked during the art-making process (Chandler, 2020; de Witte et al., 2021).

The overarching issues identified from this literature review include the lack of holistic support, miscommunication between healthcare professionals and patients, and mistrust of healthcare providers. These issues contribute to the prolonged impact that a cancer diagnosis has on a survivor’s quality of life. Although many articles acknowledge that art therapy can provide much-needed support for cancer patients in their cancer journey, more evidence-based research is needed to firmly establish the efficacy of art therapy in cancer treatment (Geue et al., 2010). Thus, this study aims to further explore the relationship between cancer diagnoses and art therapy in respect to improving a survivor’s long-term quality of life.

Research questions

To help organise the knowledge I had gained from literature and fieldwork, I curated my artwork that related to my cancer history (see Appendix A). This evoked memories and prompted reflection on past experiences. I was able to recall moments that I believed significantly impacted the trajectory of my life; these are described as ‘epiphanies’ by Ellis et al. (2011). Through correlation of my artwork, recurring themes in my epiphanies were identified. I used these themes to guide the development of three primary research questions, which are the focus of this study:

• How has the cancer diagnosis impacted the quality of life of a cancer survivor?

• How was the cancer survivor’s mental health affected by the cancer diagnosis and medical treatment?

• In relation to post-diagnosis life, what impact does visual art, as therapy, have on the quality of life and mental health of female cancer survivors?

Methodology

Study design

The methodology employed in this single case study integrated an autoethnographic ABR framework. The term ‘autoethnography’ describes personal experience (‘auto’) to produce a representation (‘graphy’) of cultural (‘ethno’) experiences, societal expectations, and shared beliefs, values and behaviours (Adams et al., 2017). Autoethnographies humanise research by focusing on life as ‘lived through’ in its complexities, showing that you, as readers, and we, as authors, matter. It also shows to other individuals, involved in or implicated by our projects, that they matter too (Adams et al., 2017). This methodological approach provided a framework that guided the selection criteria, data collection, data analysis and discussion.

Searching for a participant

In an ethnography, researchers gain insight from interviewing and observing cultural community members. The researchers then use these interactions to help guide their writing (Adams et al., 2017). Similarly, in autobiographies, researchers converse with other individuals to help evoke and reflect on past experiences (Adams et al., 2017). As this study applied an autoethnographic approach, it allowed me to work alongside the participant to explore and elicit past thoughts and feelings, while also gaining insight from someone who has similar lived experiences (McNiff, 2011; Rieger et al, 2021).

Prior to the commencement of participant recruitment, ethical approval was obtained from the Murdoch University Ethics Committee (Ethics approval # 2022/095). I aimed to recruit one participant through public methods, including snowball sampling and third-party agencies. A study-participant recruitment flyer was emailed to two agencies, Solaris and the Cancer Council. The flyer detailed the study’s purpose and the participant selection criteria. Through snowball sampling, one expression of interest was received from a friend of a friend and seven expressions of interest from the Cancer Council.

The criteria for inclusion were women over the age of 18, with a history of cancer, who were not currently undergoing physical cancer treatments and who had engaged in arts-based practice. Participants were excluded if they did not consent to having interviews audio or visually recorded.

Out of the eight expressions of interest, only one fulfilled all selection criteria. This participant viewed the research flyer advertised in the Cancer Council Newsletter. An invitation to participate was emailed to the participant, detailing the nature of the study, their rights as a voluntary participant and the potential risks associated with their participation in the study. The selected participant was a 69-year-old single female, who did not have children. She had experienced two separate diagnoses of breast cancer, with her first experience occurring 26 years ago in her right breast and the second in her left breast. Her breast cancer therapy was concluded in 2022. The participant has engaged in the arts, specifically drawing, journaling, drama and public speaking, and is a published author.

Interview process

All interviews, including artmaking, were performed in accordance with the Murdoch University’s code of ethics and current professional standards of practice. The participant gave informed written consent for audio and visual recordings and photography, and deidentified publication of research outcomes.

Data was derived from three one-hour in-person video/audio-recorded interviews, incorporating discussion and creative expression. All interviews were conducted in a small and quiet room, with the participant and me sitting next to each other and the materials laid out in front of us. Each interview began with a question and three follow-up sub-questions (see Appendix B). The participant was then asked to discuss her experiences relating to the impact of her cancer diagnosis while engaging in art-making (drawing, painting and/or collage). As the participant declined to use collaging, stating she “was not a crafty person”, only drawings and paintings were completed. After she completed her image in a session, I asked follow-up questions derived from Knill’s aesthetic analysis process (Knill et al., 2005) (Appendix C). This entails focusing on the participant’s process of image-making, the emotional experience of the creative process and the participant’s interpretation of the content of her image.

After every interview, I used response art as a creative process for self-reflection. Response art is the practice of creating artwork in response to client interactions within the clinical context (Nash, 2019). I explored and reflected on my impression of the participant’s narrative, as it evoked emotions I had experienced after my diagnosis and treatment. Furthermore, this process aided in the development of themes that I then used in the data analysis.

Interview transcription

During the interview and art-making process, the participant was observed and recorded to generate a deidentified transcript. All four artworks created by the participant and three artworks created by me were incorporated into the transcription process. All three transcripts were included in the data analysis. NVivo (v12) was used to code more than 30,000 words and seven images. Data saturation occurred by the third transcription. At this point, no new information was generated by the additional data (Morse, 1995).

Emerging themes with many layers

Initially, eight interchangeable themes were identified. It was difficult to allocate a name to each overarching theme, due to the multiple layers of information and the connections between all the codes. Two creative processes (see Appendix D) were used to embody the data, which provided a new perspective on pattern recognition, categories and their relationships (Braun & Clarke, 2013).

Two overarching themes, Information and Change, emerged (see Figure 1). These themes were structured both laterally and hierarchically, indicating the relationship between them (Braun & Clarke, 2013). The key subthemes were grouped, and codes were categorised (see Appendix E).

Figure 1. The relationship between emerged themes.