Exploring the experiences of individuals living with persistent pain using a visual art diary

Abstract

Introduction

Persistent pain significantly impacts daily living. Visual arts interventions can have positive outcomes, but little is known about benefits for people with persistent pain. This study aimed to explore participant experiences of utilising visual art in expressing and managing their persistent pain experience through a visual diary.

Method

As part of a small exploratory study nested in a larger project, participants with a history of persistent pain were recruited from a local pain management clinic. Six participants with persistent pain attended five weekly intervention sessions involving art observation, creation and discussion, at the Art Gallery of NSW. Participants explored their ideas about their pain experience through artmaking using visual and written data from self-reported pain diaries. Thematic analysis was used.

Results

Analysis of five diaries was conducted. Visual and written expressions of the pain experience varied. Colour was used by participants to represent ideas and emotions. Capital letters were used to convey tone, or emphasis. Three main themes emerged from the written and visual data: ‘The lived experience of pain’, ‘The powerful drive for growth beyond change itself’ and ‘Personal values and perceptions guiding daily living and decision-making’.

Conclusion

This study provides insights into the potential benefits of using visual arts to help manage persistent pain experiences and improve health outcomes.

Keywords

Chronic pain pain management art diary lived experience

Introduction

Pain is a complex and global human experience and persistent pain is a significant health concern. Persistent pain, otherwise known as chronic pain, is pain that persists or lasts for more than 3 months (Treede et al., 2019) or beyond the time required for tissue healing. As pain is fundamentally subjective in nature, defining pain to incorporate the sensory, emotional, cognitive and social aspects of pain is difficult (Ellison, 2017). The universally accepted definition of pain from The International Association for the Study of Pain (IASP) is ‘an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage’ (Raja et al., 2020. p. 21). This definition reflects the multifaceted nature of pain.

Persistent pain has a significant negative association with overall life satisfaction, including impacts on daily living and social participation (McNamee and Mendolia, 2014). Up to a third of the global population lives with persistent pain, and one in 10 individuals are diagnosed every year as having persistent pain (Goldberg and McGee, 2011). In Australia alone, the economic costs of lost workdays and productivity due to pain amount to 1.4 billion AUD per year, with a total estimated cost of 5.1 billion AUD (£2.5 billion) per year (Van Leeuwen et al., 2006) indicating that it is a significant economic burden.

The biopsychosocial model is the standard model of care for individuals with persistent pain (Wijma et al., 2016) and was used as the guiding model for this study. Multidisciplinary pain management approaches have been offered to patients with persistent pain only since the 1990s and 2000s and such approaches are cost-effective (Siddall and Cousins, 2004). The efficacy of several psychosocial interventions has been supported in meta-analyses of randomised control trials (Hoffman et al., 2007) such as cognitive behavioural therapy (Jorn, 2015), physiotherapy, relaxation techniques and gradual exposure to individualised exercises (Marcus, 2009). Self-management strategies can reduce the intensity and duration of pain (Clauw et al., 2019), increasing quality of life, patient autonomy and decreasing social isolation. These include patient education, low impact exercises such as walking and swimming (Marcus, 2009) and engagement in creative activities. One such creative activity is visual art.

Creating visual art can be used as a means of communication which enables individuals to express, synthesise and potentially cope with their lived pain experience. This transcends verbal means of communication, by creating a holistic representation of chronic illnesses to convey the patient’s perspective to others including health professionals and the general public (Henare et al., 2003). While there are limited studies on the role of visual arts in persistent pain management, patients with cancer or chronic illnesses have benefited from interventions involving expressive writing and movement-based creative expression (Khan and Moss, 2017), photography (Rolbiecki et al., 2019) and visual arts (Kirkham et al., 2015). It is known that some patients find drawing an easier method of expressing their pain, as opposed to verbalising their feelings (Marcus, 2009). Existing systematic reviews and studies have documented a positive association between visual arts interventions and mental health, such as promoting a sense of belonging, positive identity development and empowerment (Jensen, 2018). The use of creative art therapies can also improve quality of life while managing pain symptoms and health outcomes, as well as having positive influences on the experiences of hospital staff and students (Khan and Moss, 2017).

As part of creative approaches in recording or expressing pain, some studies have utilised electronic diaries to record daily pain levels (Rost et al., 2016; Van Ryckeghem et al., 2013), and one study used written diaries to explore the experiences of older women with persistent back pain (Broom et al., 2015). An association has been found between negative affect and daily pain experiences (Rost et al., 2016), and attentional bias and disability levels, pain severity and distractibility, but this did not necessarily predict daily pain outcomes (Van Ryckeghem et al., 2013). Broom et al. (2015) conducted diary research to capture insights into the roles, relationships and emotions that participants experienced in their daily lives. These included perceptions of chronic pain, including its legitimacy as an illness, and the impact of fluctuating suffering on individuals’ self-recognition. However, the study was limited to only brief entries of written expression due to the guided diary format. The use of visual diaries has not been researched widely and there is potential to explore the use of art and visual diaries in the expression and management of persistent pain. Therefore, this study aimed to explore the utility of a visual diary in developing understanding of persistent pain experiences through visual arts creation.

Method

The study was part of a pilot quasi-randomised clinical trial exploring the biopsychosocial impacts of visual arts interventions on persistent pain. The larger pilot study was registered on ANZCTR with the universal trial number (UTN) U1111-1233-2338 and received ethics approval from Sydney Local Health District (protocol number X19-0171 & 2019/ETH09852).

Study design

A qualitative description approach was chosen for this study to complement findings from the larger study by exploring the lived experience of people with chronic pain. Qualitative description aims to learn about a phenomenon through participant descriptions of their experience and uses this to inform healthcare interventions (Sullivan-Bolyai et al., 2005).

Recruitment

Participants were recruited from the Royal Prince Alfred Hospital (RPAH) (Sydney) Pain Management Clinic waiting list at the monthly introductory programme called Self Training Educative Pain Sessions (STEPS). Information regarding the research project was provided to eligible potential participants and interested individuals who had provided their contact details to receive further information were sent a consent form and then contacted the research team to give their consent to participate.

Participants

Inclusion criteria were being over 18 years of age with a diagnosis of persistent pain, and no change in the level of pain over the past 3 months. Participants were excluded if they had started new pain-related medication or treatment within the past 3 months. After a presentation at the STEPS programme, eight participants (out of 14) agreed to take part in the study. All participants presented with a history of persistent pain. Of the eight recruited participants, six enrolled in the study and attended all the art intervention sessions.

Study intervention

Participants signed a written informed consent prior to the commencement of the study, and they were able to withdraw from the project at any time. All participants were reminded before and after every session to maintain the privacy and confidentiality of all those in the session. Participants were advised to monitor their pain throughout the sessions and to contact their general practitioner if needed.

Participants attended five sessions of a visual arts intervention at the Art Gallery of NSW over 5 weeks. Each session included art observations, creation and a discussion that was audiotaped, lasting between 3 and 3.5 h with assessments conducted at the beginning (session 1) and the conclusion (after session 5) of the programme. Participants received guidance on the exploration and expression of pain experiences through the artmaking process, including their hopes in the event of sufficient pain management, as well as how pain impacts their life. Guidance for artwork observations was also provided where the participants shared experiences with each other, the artists, researchers and assistants. A group discussion following the creation session explored participants’ views of the artmaking process and the personal significance of the artworks (see outline of the programme in Table 1).

Table 1.

Detailed outline of weekly intervention session components.

Art Session	Topic	Artwork/Mediums	Focus Group
1	Introduction and exploring ways of expressing self through art	Sculptures and paintings	Experience of settling into first session, thoughts on role of artmaking. Direction of personal focus and energy Artmaking as relief or distraction?
2	What is meaningful to you?	Australian Gallery-Works by Margaret Olley	Comparison to last session Energy levels this week Three words about yourself from artworks created.
3	Expressions and exploring their pain	Ben Quality Exhibition	How pain is expresses in the artworks and how the artwork represents you How was the experience of artmaking?
4	Concept of ‘play’ Exploring the idea of not having pain	Australian Gallery European Gallery	Painting and expressing life without pain. How was the experience of artmaking?
5	Sharing joy	European Gallery	Reflection on past five weeks and any perceived benefits/challenges of participation Sharing of joy

Data collection

This study focused on self-reported pain diaries to record pain behaviour as an outcome at the end of week five. Recordings of pain behaviour in a pain diary and from prompting questions were undertaken outside of the sessions throughout the whole 5-week period. Discussions during the 5-week program were recorded and transcribed. Participants were encouraged to record as many diary entries as they desired. Hard copy or electronic diaries have been used as a self-management tool to manage chronic pain (Charoenpol et al., 2019) and can assist in reducing pain intensity and improvement in mood and functioning. For this study, a hard copy version was used to allow art expression as well as words. Solicited diary research allows participants to have the autonomy to share their lived experiences in different forms and enables themes to emerge naturally. The purpose of the project was not to assess the quality of the art, but to explore and develop an understanding of participants’ expression and ideas about their pain experience through artmaking.

Participants recorded changes in their mood, activities, pain behaviour and any other information that they wished to include in the diary. Open-ended written prompting questions were used to align with the exploratory nature of the study. Additional diary documentation included a pain rating scale, and information on medications and healthcare visits. Participants were encouraged to use visual means to express themselves with or without written commentaries. This assisted in ensuring the accuracy of meaning and interpretation due to the subjective, personal nature of art. Participants were also encouraged to record in their diaries as much as possible throughout the 5 weeks, with weekly reminders provided after each intervention session. ‘My Pain Diary’ is presented in Supplementary File 1.

All collected data was scanned, de-identified and stored securely on a password-protected university research server, and participants were assigned code names. The diaries were returned to participants. Participants gave permission for drawings and verbatim quotes to be used in this study, with the context being masked where appropriate to reduce risk of participant identification.

Data analysis

Thematic analysis was used to understand participant experiences through written diary entries, transcripts of discussions and visual drawings with associated written commentary in the participants’ pain diaries, guided by the biopsychosocial model of pain. This approach allowed flexibility in following different data analysis frameworks to identify themes and patterns (Kim et al., 2017). Meaning was analysed within the context of the diaries (Sandelowski, 2010). Data were triangulated from three sources: the pain diary content, the transcribed discussions and written researcher observations recorded from the focus groups during the intervention sessions.

The pain diaries and written prompting questions were read individually to gain a holistic understanding of each participant, as they were used in different ways and to different extents. The diary entries, responses to the prompting questions and discussion transcripts were then transcribed, including any written commentary provided by the participants about their drawings. Visual analysis was conducted by transcribing any visual expression in the diaries through a detailed description of the subject matter, including colours, lines, shapes, motifs and other distinguishing features. Line by line coding of the transcripts was undertaken by three independent researchers to generate codes that also included any commentary of drawings. This established a coding technique that enabled systematic data analysis where codes were generated inductively. All codes for each participant were reviewed by the three researchers to combine similar codes, which were then rearranged to form categories by the primary researcher (JL). These categories were compared across all participants and condensed into succinct categories reflective of the entire data set. Themes emerged from these categories to accurately capture the meaning of the experiences. A thematic mind-map was also produced to visually represent the interconnections between themes, categories and codes.

Trustworthiness

To ensure trustworthiness, member-checking occurred during the 5 weeks of extended contact. Researchers regularly discussed data analysis and the writing process, including use of triangulation, consensus coding and use of key quotes. A detailed audit trail was used to facilitate transparency of data collection and analysis. Active reflection was undertaken by the primary researcher (JL), and in discussion with other researchers, to mitigate preconceived notions of persistent pain and reduce bias when interpreting how the pain experience impacts an individual’s engagement in daily activities.

Results

All six participants attended every art intervention session across the 5 weeks. However, the use of the take-home pain diary and prompting questions varied widely. One person did not have a completed diary as they had lost it, and amongst the five participants who returned data in their pain diaries, four diaries and four sets of prompting questions were complete and were therefore analysed. However, data from all participants who were included in the recorded discussions were included.

Participants in this study identified as male (n = 2), female (n = 3) or non-binary (n = 1), and their age range was from 21 to 71. They had varying diagnoses for their persistent pain including generalised pain and post-traumatic pain, fibromyalgia and connective tissue disorders. Participants had different levels of confidence in art creation and showed wide variations in the number of written entries, drawings and prompting question entries completed. Depending on their pain experience, participants’ frequency of entries ranged from several entries a day, to weekly entries. The time taken for entries varied due to factors ranging from the artwork size and level of detail, to the length of written entries, and the intensity of pain. Participant demographics are presented in Table 2.

Table 2.

Participant demographics and number of entries.

Participant ID	Age	Gender	Diagnosis	Level of Confidence in Art Creation	No. of Written Entries	No. of Drawings	No. of Prompting Questions’ Entries
1	21	Non-binary	Generalised persistent pain; no diagnosis provided	Confident	17 (long and 21 short entries)	21
2	71	F	Rheumatoid arthritis and fibromyalgia	Not confident	12 (short entries)	2	8 (in pain journal)
3	43	F	Persistent and recurring pain due to connective tissue disorder	Confident	9 (long entries)	1	0
4	53	M	Post-traumatic persistent knee and back pain	Somewhat confident	0	0	27
5	21	F	Persistent and recurring pain due and recurring pain due to connective tissue disorder	Somewhat confident	0	3	4
6	47	M	Post-traumatic persistent knee pain	Not confident	NA*	NA	NA

* The pain diary/prompting questions were not returned to the researchers.

Four participants created drawings and other visual expression in their pain diaries, with distinctive differences in style, subject matter and use of art techniques. This took the form of artworks as the focus of the pain diary or using art to complement or emphasise parts of their written diary entries. Two participants also used the pain diary for creative experimentation with different colours and art techniques, including one who used their diary to practice a paper collage technique from the intervention sessions. There was a primary focus throughout their drawings, such as depicting areas and types of pain within the human body, or one participant used Halloween-inspired images as the project started in October 2019. Other drawings were an amalgamation of smaller images, such as balloons, smiley faces and music notes. Colour was used by participants to represent ideas, emotions or for aesthetic purposes. Capital letters were also used to convey tone, or to increase legibility and emphasis. Along with the written entries from the diaries and prompting questions, this visual data forms the basis for the emerging themes of this study. A summary of themes and categories are provided in Table 3.

Table 3.

Themes and corresponding categories based on visual and written datasets.

Theme	The lived experience of pain
Categories	- Description of pain experience aspects
	- Pain management
	- Pain and the physical body
	- Connection between pain and emotion
	- Factors affecting pain
Theme	Expression of pain through art and artmaking process
Category	- Relationship between art and pain
Theme	Personal values and perceptions guiding daily and decision-making
Categories	- Beliefs and perceptions about self/world
Categories	- Activities and demands of daily living

Three main themes developed from the visual and written data: i) the lived experience of pain, ii) the drive for growth beyond the pain experience and iii) personal values and perceptions guiding daily living and decision-making.

1. The lived experience of pain

Contributing factors to pain

The lived experience of pain encompassed a wide range of factors, with notable similarities and differences observed across all participants. Some described their pain experience in detail, utilising metaphorical language such as the capitalised caption of Participant A’s drawing (Figure 1(A)). Participant C also personified the pain as ‘actively suck[ing] the colour out of everything nearby’. They elaborated by detailing reactions and coping strategies for fluctuating pain levels. On the other hand, Participants B, D and E used short, succinct descriptions of the pain area, type and intensity (‘Painful sharp cramps’, ‘intense, whole body’, ‘dull lower back pain’).

Figure 1.

Drawings by Participant A: (a) pencil drawings (1); (b) pencil drawings (2) and (c) pencil drawings (3).

Stress was a recurring factor closely aligned with fatigue for all participants. Words such as ‘tired’ and ‘exhausted’ were repeated across all datasets. Sources of stress ranged from external factors such as environmental changes (‘Too many flights of stairs & stress … Not enough time to rest & recover’. – Participant C), financial instability impacting on socialising (Participant D), university demands and meal preparation, to internal factors including anxiety and negative self-talk. Participant B highlighted the importance of the environment, identifying the Art Gallery as ‘a calming non/threatening environment’. These factors were identified as contributing to pain, but also being exacerbated by pain.

Pain management

Another common topic across all participants was pain management strategies, whether it was through exploring new and existing strategies, expressing concerns about the impact of pain, recording medication changes and adherence, or simply making sense of their pain experience. For example, the sharp and unpredictable transition from no pain to experiencing intense pain was demonstrated through Participant C’s image of a ball bouncing between two worlds: the pain-free world and the pain-filled world.

…I get into a flow, connect with my goals & my beautiful humans, refocus on great habits --- & then the walls cave in & my ball bounces into the other world of pain, fatigue & brain fog’.

For some participants, bed rest was the most common outcome when pain levels increased beyond other coping strategies. Varying descriptions depict being bed ridden (Participants C and D) and difficulty functioning without deep sleep (Participant B).

Participants described routines and habits of daily living disintegrating easily, with a significant negative social impact. Participant C uses the metaphor of a music band to represent the complexity and repetition of re-establishing routines and relationships.

‘…the music stops & the instruments shatter to a million pieces… & it all needs to be rebuilt from scratch.

Even simple functional and cognitive demands were impacted (‘Pain…cuts off my memory. Forget to eat well, forget meds’), which Participants B and D both shared, particularly with the inconsistency and unpredictability of new medication (‘Frustrated - New meds not working’, ‘*Works 4 me!!’) as well as medication adherence (‘Didn’t take meds’, ‘Forgot meds’).

Connections between pain and emotions and the physical body

Several participants attempted to understand their pain experiences through exploring the connections between pain, emotions and the physical body. Participant A expressed their belief that pain was interconnected and purposeful through a drawing of circles forming a human body (Figure 1(B)), whilst simultaneously personifying bacteria to explore their beliefs of a parasitic relationship between pain and the physical body.

Whilst Participant A identified sensory stimuli as a factor negatively affecting pain, they also presented physical and sensory aspects of stretching as an example of positive connection. Participant C extended this by highlighting sensory stimuli as a pain regulator (‘If I’m fully immersed in the cold ocean or a hot sauna…it all stops for a while’, Figure 2(A)).

Figure 2.

Drawings by Participants B and C: (a) drawing by Participant C and (b) a collage by Participant B.

Furthermore, Participant C drew upon their academic background and expertise to view their pain experience from a research perspective. They distinguished between persistent, recurrent and chronic pain by describing their personal experience with recurring new acute injuries, expressing frustration towards researchers and clinicians who do not address recurrent pain. This frustration was echoed by Participant A, who highlighted the misjudgements medical professionals made.

Emotions also positively or negatively impacted a participant’s pain experience, as depicted in the symbolic use of balloons to associate emotions with pain levels in Participant B’s drawings (Figure 2(B)). Conversely, Participant C rejected the notion of pain being psychogenic and from ‘an emotional origin’. They emphasised the importance of pain regulation by highlighting how common coping strategies can ‘backfire’, such as mindfulness and body-scan meditation.

2. The drive for growth beyond the pain experience

For several participants, a focus on skill development and personal growth was central to expressing, managing and transcending their pain experience. Art and the artmaking process was used by several participants to facilitate this growth, including exploring and depicting the relationship between art and pain. Two participants emphasised how pursuing personal growth through art and artmaking facilitated pain management. Their diaries highlighted the role of art in temporarily shifting attention away from the pain to focus on the aesthetics and creative process of artmaking. In answering their prompting questions, Participants A and D shared this sentiment about art exhibits being a distractor that helped pain management.

– Awareness of pain retreats into the background for a while

- Looking at discussing & creating beautiful things is calming

The pursuit of a flow state within structure and routine was also a strong motivator for participants that developed from the artmaking process. This notion of shifting focus was extended by Participant C, who stressed the importance of focusing on elements of artmaking to express pain and achieve a flow state of mindfulness. The entry was written in a strong orange colour.

‘…I am mindful in an attentive flow state (like w writing, art) … focusing on the page & the colours, describing & drawing the pain, giving it shape & texture & size & colour, that’s soooooo much better…’

‘I just want to find… a rhythm & flow in something known & structured…’

Participant B also considered the changing relationship between themselves, art and pain, by highlighting their inexperience with artmaking and developing creativity through acquired art techniques. They further alluded to attending drawing classes for skill development, which is mirrored in Participant C’s desire to have a ‘mini art retreat’. In addition, two participants used their diary to explore creativity through revising previous art skills and testing new techniques, rather than expressing their pain.

Thus, participants displayed a strong motivation for developing meaningful skills and personal growth. By engaging in art appreciation and artmaking, participants sought to generate personally meaningful activities, growth and value beyond being defined by their pain experiences.

3. Personal values and perceptions guiding daily living and decision-making

Guiding beliefs about the self and the world

Two participants shared their personal mindsets, values and worldviews in written entries in their pain diaries. Participant A highlighted the difficulties of reconciling their personal vision and hopes with existing challenges such as society’s definition of ‘worth’. They ultimately highlighted the challenge of balancing self-care and upholding personal values in guiding their daily living and decision-making.

Participant C conveyed maintaining hope and personal values through establishing a positive mindset, which enabled their sense of self-acceptance and preserved aspirations for the future (‘I wanna… just play… find my groove, get better…’). Their personal definition of acceptance facilitated self-love despite their pain:

‘…Acceptance of disability was (for me) a doorway to new levels of rest, restoration, potential, possibility, curiosity, & capability…’

Another common topic amongst participants was the attitude and desire for change. Participants B and C both shared a positive mindset towards trying new things (‘Excited to try something’) but also the uncertainty of change (‘…constant newness is chaotic & disorienting’). Participant C elaborated by discussing the limitations of current practices and models of treatment, and how visual arts transcended these limitations.

Too many of these treatments push round pegs into square cookie-cutter checklists, & make the symptoms worse, not better.

Sometimes you just want to dislocate the dismissive doctor’s shoulder & tell them the pain is all in their head, too.

Activities and demands of daily living

Most participants also tracked daily activities and tasks in the diary and using the prompting questions, including self-care, job-seeking and medication management. Participant D recorded fluctuating moods and pain levels resulting from financial instability, describing his pain worsening when ‘jobless’. Similarly, Participant A shared their financial difficulties impacting basic needs, such as food and rent, which exacerbated their pain. They also highlighted the paradox of sacrificing their health to study and earn enough to maintain their health and manage their pain.

Participants collectively emphasised the importance of self-care in managing their pain experience through different approaches. One participant withdrew into self-protection as a coping mechanism, whilst others emphasised the relationship between rest and fatigue that impacted their daily roles and routines. One participant stressed the importance of structured routines and habits as a coping mechanism and the resulting frustration when disrupted by periods of severe pain. The notion of overworking oneself and exceeding daily energy levels was commonly mentioned. Participant E reflected ‘Did way too much this week. I need to learn to not push myself so hard’. ‘Fatigue’ was a descriptor repeated across almost all the pain diaries and prompting questions, including ‘tired’, ‘exhaustion’ and ‘brain fog’, with Participant A identifying rest as a privilege (Figure 1(C)).

Discussion

This study explored the impact of visual arts creation on persistent pain experiences using a visual diary. Whilst research interest in the integration of art and health has increased in recent years, there have been limited studies exploring lived experiences of persistent pain through visual arts creation (Broom et al., 2015; Henare et al., 2003; Kirkham et al., 2015). Using visual diaries, this study enabled more individualised insights into each participant’s pain experience.

There were three main themes that emerged from the written and visual data about personal pain experiences. Participants communicated about their lived experience, including pain management, factors affecting pain and connections between pain, emotion and the physical body, through the visual arts diaries. Participants wanted to develop skills and personal growth through art appreciation and artmaking as they could express their pain through this process.

Study themes were largely congruent with previous findings from similar studies (Broom et al., 2015; Henare et al., 2003; Kirkham et al., 2015; Larsen et al., 2018), indicating the potential of visual means in effectively communicating and influencing pain experiences. Previous studies have considered how appreciating aesthetic beauty, learning art techniques and enjoying artmaking can play a role in symptom reduction for palliative patients (Lefèvre et al., 2016). Visual representations of pain have also been expressed as metaphors that convey the complexity and intensity of the experience in single case studies and group programmes (Nizza et al., 2018). In this study, the participants used artmaking to manage their pain experience and visual metaphors expressed these experiences. Participants described resilience in living with persistent pain and their desire for meaningful personal development of skills and qualities. Study findings validated previous studies discussing the relationships between the physical and psychological elements, acceptance and resistance, and the invisibility and tangibility of pain as substantial concerns (Tarr et al., 2018; Toye et al., 2013).

Participants commonly focused on symptom management. This concern permeated every aspect of daily living, especially regarding pharmacological interventions. A paradoxical relationship existed between the reliance on medication for relief and pain affecting the ability to take medication. The unpredictability of the effectiveness of medication and any side effects also reflected the pain experience itself. Participants also presented the elusive concept of rest. All participants conveyed a sense of being trapped by their bodies’ fluctuation between needing medication and rest, which is a common theme in pain literature (Tarr et al., 2018). This loss of agency was further exacerbated by frustrations towards clinicians dismissing or misinterpreting their pain experience, or the pain experience being taken seriously by others (Dickman and Simpson, 2008; Toye et al., 2013). Tarr et al. (2018) noted cooperative relationships with clinicians which differed from this study. A common representation of persistent pain being perpetually in the background of daily living, with flare-ups bringing it to the foreground, was consistent with previous research (Nizza et al., 2018).

Whilst all participants were strongly motivated to express their pain through art appreciation and the artmaking process, there were varying perspectives on the value of art creation in generating meaningful growth and distraction from pain. This desire to shift identity and focus beyond pain appeared to stem from a combination of the participants’ prior artmaking experience, personal taste in art and creative exploration over the 5 weeks. Colour was used as a consistent motif for emphasis and symbolism, aligning with representation methods in previous studies that incorporated visual arts programmes (Henare et al., 2003; Kirkham et al., 2015). Whilst some participants generated meaning and fostered self-development through visual and written expression, the visual diaries were equally valuable as a distraction from pain. Indeed, several participants commented on artmaking being a distractor, that sometimes facilitated a flow state, which reflected participant perceptions. The value of art creation was highlighted when compared to other data collection methods, such as rating scales. Several participants expressed dislike towards the pain rating scale due to its limiting descriptors and the inadequacy of a single number representing fluctuating pain.

Participants also emphasised the importance of structure in daily living when navigating the challenges and differences in accepting and resisting pain through their artworks. Participants also reinforced notions such as pain changing their perspectives of the physical ‘real’ self and personal competency, and creating social isolation, which are recurring themes from previous qualitative studies on lived experiences of persistent pain (Dickman and Simpson, 2008). The relationship between acceptance and resistance towards pain has been highlighted throughout pain literature. Pain signals can wholly capture an individual’s attention, often leading to repeated internalisation of the perceived threat of pain and potentially damaging their personal identity (Toye et al., 2013). The value of establishing a personal identity beyond the pain experience was reflected in the participant pain diaries with insights into the importance of remaining connected to others and the wider community, including actively expanding personal capabilities. Participant diaries also emphasised maintaining hope for the future and ‘internalising’ such hope, whether it was for improved treatment or simply maintaining their quality of life despite their pain experiences. Indeed, the notion of hope has been a big focus of previous studies on visual arts and persistent pain (Larsen et al., 2018). Overall, participants found the visual diaries and intervention useful in both expressing their lived experience, fostering self-development and providing a distraction from pain.

Strengths and limitations

As the pain diary and prompting questions were self-recorded outcome measures, there were limitations to the breadth and depth of participant responses. To mitigate this, open questions were used, but there was variation in the depth of responses. Additionally, participants with no prior artmaking experience shared concerns about their visual expression abilities despite assurances that the study was not concerned with artwork quality. Combined with some participants not having artmaking tools at home, this may have impacted upon the artwork produced. Participants consented to verbatim quotes being included in the final study; however, due to COVID-19, artworks could not be analysed in person with the participants.

Implications for practice

The results of this study have emphasised the need to understand the lived experiences of people with chronic pain which will contribute to interpreting the results of the larger study. Results have illustrated how the pain experience influenced personal identity for the participants, which can enhance the relevance and effectiveness of occupational therapy practice for people with chronic pain. As occupational therapists are concerned with the effect of chronic pain on all areas of a person’s life including their competency and identity, the findings from this study provide insight into the individual occupational needs of those with chronic pain (Lagueux et al., 2018). Use of pain diaries and art expression can promote client-centred interventions so that treatment does not create any unintended trauma and negativity. This study also highlighted the usefulness of art as a potential medium for understanding pain experiences and providing an alternative form of communication that occupational therapists can incorporate into their practice.

Conclusion

The use of a pain diary including visual art and engaging in art-based activities enabled participants to explore their experiences of chronic pain. Analysis of the diary entries and the artworks produced indicated how participants dealt with their pain. Participants found value in using art and artmaking to express, manage or distract from their pain experience. The themes identified in this study should be further examined through larger studies.

Key findings

• Visual art and artmaking can be used to express, manage or distract from chronic pain.

• Analysis of a pain diary and visual art can be used to understand the experience of chronic pain and its effect on personal identity.

What the study has added

The use of a pain dairy with visual art contributions can be used to enable occupational therapists to work with people experiencing chronic pain in a more meaningful way.

Supplemental Material

sj-pdf-1-bjo-10.1177_03080226221079239 – Supplemental Material for Exploring the experiences of individuals living with persistent pain using a visual art diary

Supplemental Material, sj-pdf-1-bjo-10.1177_03080226221079239 for Exploring the experiences of individuals living with persistent pain using a visual art diary by Jasmine Lou, Fereshteh Pourkazemi and Lynette Mackenzie in British Journal of Occupational Therapy

Footnotes

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 research project was supported by Industry and Community Engagement Grant (2018-20) from The University of Sydney Commercial Developments & Industry Partnerships (CDIP). The allocated funds were used to complete the project and the authors did not receive direct income to conduct the research.

Research ethics

Approval from Sydney Local Health District (protocol number X19-0171 & 2019/ETH09852).

Contributorship

JL and FP researched literature and conceived the study. JL, FP and LM were involved in protocol development, gaining ethical approval, patient recruitment and data analysis. JL wrote the first draft of the manuscript. All authors reviewed and edited the manuscript and approved the final version of the manuscript.

Patient and public involvement data

During the development, progress and reporting of the submitted research, Patient and Public Involvement was not included explicitly at any stage of the research. However, the findings were the result of patient data which were approved by patients involved in the project.

Data availability statement

The data that support the findings of this study are available from the corresponding author (JL) upon reasonable request.

ORCID iD

Lynette Mackenzie

Supplemental Material

Supplemental material for this article is available online.

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