Introduction
Traditional health research methods, including surveys and clinical assessments, often fail to capture the rich, nuanced experiences of socially marginalized groups like older adults living with HIV (Bonevski et al., Reference Bonevski, Randell, Paul, Chapman, Twyman, Bryant, Brozek and Hughes2014). Health research has tended to prioritize objective data over subjective experience, reducing the individual to a collection of health metrics rather than a person with a lived history (Martin & Félix-Bortolotti, Reference Martin and Félix-Bortolotti2014). Arts-based research, by contrast, offers an alternative approach that emphasizes the lived experience, providing a space for participants to express themselves creatively and reflectively (Leavy, Reference Leavy2020). This method has gained increasing attention for its capacity to elicit deep, personal insights, particularly within socially marginalized populations (Leavy, Reference Leavy2020). For older adults living with HIV, who often navigate complex intersections of health, aging, and stigma, verbally articulating painful or marginalized experiences may be difficult, retraumatizing, or even silenced due to internalized stigma and fear of judgment (Brown & Adeagbo, Reference Brown and Adeagbo2021).
Arts-based research, by contrast, creates an alternative space that can bypass some of the barriers associated with verbal disclosure (Dupuis et al., Reference Dupuis, Kontos, Mitchell, Jonas-Simpson and Gray2016). By acknowledging the cultural, emotional, and spiritual dimensions of experience, arts-based approaches can support a ‘pluriversality’ of epistemologies, ontologies, and axiologies, recognizing that knowledge is shaped by diverse cultural worldviews rather than universal truths (Strand et al., Reference Strand, Albany, Buthelezi, Hambaze, Lemahieu, Magwaza, Rivers, Swartbooi, van Vught and Snow2024). In this way, arts-based research challenges the dominant paradigms of knowledge creation and validates the experiences of people whose voices are often marginalized or silenced in traditional research settings. Through non-verbal or symbolic expression, such as visual art, poetry, or storytelling, participants can share experiences that might be too emotionally complex or stigmatized to put into words. For older adults living with HIV, who often navigate intersecting challenges related to ageism, HIV stigma, racism, homophobia, and medical mistrust, the arts offer a powerful mode of expression that can restore a sense of agency and visibility (Hosaka et al., Reference Hosaka, Mandewo, Mmbaga, Ngowi, Dow and Stewart2023; Stuart, Reference Stuart2010; Wood, Reference Wood2012).
James Haywood Rolling Jr., a leading scholar in arts-based inquiry and past president of the National Art Education Association, describes arts-based research as a research paradigm that complements and enhances traditional social science and educational approaches (Rolling, Reference Rolling2016). Arts-based research has been defined as ‘the systematic use of the artistic process, the actual making of artistic expression in all of the different forms of the arts, as a primary way of understanding and examining experience by both researchers and the people that they involve in their studies’ (McNiff, Reference McNiff2008, p. 29). This approach is highly adaptable, blending both practice-based and theory-building methodologies, which allows for the integration of arts and sciences in naturalistic inquiries and fosters innovation, often leading to new discoveries (Rolling, Reference Rolling2016). By combining both practice-based and theory-building methodologies, arts-based research bridges the divide between the arts and sciences, fostering innovation and leading to new discoveries (Moola et al., Reference Moola, Buliung, Posa, Moothathamby, Woodgate, Hansen and Ross2022). This paradigm offers a new direction for research, one that moves away from the dominance of text-based approaches and embraces alternative modes of exploration and understanding (Moola et al., Reference Moola, Buliung, Posa, Moothathamby, Woodgate, Hansen and Ross2022).
In the context of HIV research, studies with older adults living with HIV have demonstrated that ABR can foster self-expression, meaning-making, and identity reconstruction while creating a sense of community and reducing isolation (Witkowski et al., Reference Witkowski, Valerio, Samad, Matiz-Reyes and Padilla2021). ABR also supports empowerment, allowing participants to advocate for their needs and shape healthcare practices in ways that reflect lived experience (Hawkins et al., Reference Hawkins, Stephens, Kornegay, DeShazor, Wolfe, Ward and Crayton2025; Restall et al., Reference Restall, Ukoli, Mehta, Hydesmith and Payne2023). At the same time, implementing ABR in the context of HIV presents a challenge (Orchard, Reference Orchard2017). Researchers must navigate ethical and practical considerations, including the management of sensitive topics, the analysis of visual and symbolic data, and power imbalances between participants and researchers (Bunn et al., Reference Bunn, Kalinga, Mtema, Abdulla, Dillip, Lwanda, Mtenga, Sharp, Strachan and Gray2020; Orchard, Reference Orchard2017).
The findings of arts-based research involving older adults living with HIV have important implications for healthcare providers, policymakers, and program administrators. By amplifying the voices of older adults living with HIV, arts-based research can inform more holistic, person-centred approaches to care (Fraser & Al Sayah, Reference Fraser and Al Sayah2011). Furthermore, through creative and narrative-based methods, arts-based research can challenge ageist and HIV-phobic stereotypes, advocating for more inclusive and equitable policies and practices (Hawkins et al., Reference Hawkins, Stephens, Kornegay, DeShazor, Wolfe, Ward and Crayton2025; Orchard, Reference Orchard2017). As older adults with HIV continue to face unique challenges in accessing care and navigating societal stigma, arts-based research offers a means to reshape public perception and influence positive change within healthcare systems.
While previous studies have explored the experiences of older adults living with HIV, few have utilized arts-based methods to engage this population in co-creating knowledge, particularly within a Canadian context where aging intersects with structural issues such as housing insecurity, racism, homophobia, and income precarity. Much of the existing literature continues to rely on interviews or quantitative data, which may not fully capture the embodied, emotional, and culturally specific dimensions of living and aging with HIV. This gap highlights the need for research that not only includes marginalized older adults as participants but also positions them as creative agents in shaping how their experiences are represented and understood. This manuscript reports findings from a subset of a larger study, focusing on older adults living with HIV who participated in arts-based workshops. It examines participants’ experiences in these workshops and explores how engagement in creative activities supported self-expression, meaning-making, and social connection. The aim of this manuscript is to explore how older adults living with HIV experience participation in arts-based research, focusing on the personal, social, and creative impacts of engaging in these sessions. This study specifically examines participants’ reflections on the process of artistic expression and how it contributes to understanding their experiences of aging with HIV. This study seeks to further explore the potential of arts-based research as a transformative tool for understanding the experiences of older adults living with HIV. By centring their voices through creative expression, this research aims to deepen our understanding of the complex realities faced by this population, shedding light on the intersection of aging, HIV, stigma, and health disparities. Ultimately, this study aspires to contribute to the development of more inclusive, compassionate, and effective care models for older adults living with HIV, with a focus on empowering individuals and communities through the transformative potential of arts-based inquiry.
Methodology and methods
This exploratory qualitative descriptive study occurred as part of a larger community-based participatory and co-design study, exploring the healthcare experiences of older adults living with HIV. Thus, this study was rooted in community-based approaches, recognizing the value of engaging participants not just as subjects of research but as active contributors to the process (Horowitz et al., Reference Horowitz, Robinson and Seifer2009). The program of research utilizes an interpretive paradigm of inquiry (Gichuru, Reference Gichuru2017). Interpretive research emphasizes understanding the meaning individuals ascribe to their experiences, acknowledging the influence of context, culture, and personal history (Gichuru, Reference Gichuru2017). In this study, we sought to capture the nuanced perspectives of older adults living with HIV, appreciating that their healthcare experiences are shaped by intersecting factors such as age, health status, stigma, and social location.
The study received research ethics approval from the Sinai Health Research Ethics Board (REB 24-0058-E). We ensured that all participants provided informed written and verbal consent prior to their involvement in the study. This involved clearly explaining the purpose of the research, the voluntary nature of participation, the potential risks and benefits, and the steps taken to protect their privacy and confidentiality. Participants were also informed of their right to withdraw from the study at any time without penalty. Informed consent was provided in accessible formats, ensuring that participants fully understood the process, including those for whom English was an additional language. Translators or interpreters were available when needed to facilitate understanding and ensure that consent was obtained in a language and manner the participant was comfortable with. All participants were encouraged to bring a family or friend member to the session if it would assist with their comfort or linguistic needs.
Following the arts-based data collection, that took place in January 2025, we explored the meaning and value of taking part in arts-based research from the perspectives of older adults living with HIV.
Research team positionality
Throughout this project, the research team relied on Starks and Trinidad’s approach of maintaining transparency and awareness of their own pre-existing beliefs, values, and perspectives (Starks & Brown Trinidad, Reference Starks and Brown Trinidad2007). The team actively involved 10 members in this phase of the study, including four academic researchers (from geriatrics, social work, and health services research), two clinicians (infectious disease and primary care), one PhD student, an artist, three community organization partners (representing HIV support, advocacy, and older adult services), and one individual with lived experience of HIV. The team represented diverse demographic characteristics: team members ranged in age from 30 to 59 years, included two men, and the rest were women. The team represented multiple ethnic backgrounds. Throughout the conceptualization of the research, data collection, and analysis, the research team engaged in individual and team discussions as a self-reflective process to recognize and set aside any biases that might arise from our diverse roles. For example, researchers and clinicians reflected on how their clinical expertise in geriatrics or infectious disease could shape their interpretation of participant narratives. Partners with lived experience of HIV also shared how their personal histories and involvement with community organizations could inform their approach to data collection and analysis.
Participants and recruitment
Eleven older adults (aged 50 +) and one peer researcher older adult living with HIV in Ontario, Canada, participated. All participants spoke English and provided informed consent; translation support was available during recruitment and consent for those who needed it.
Participants were recruited using a combination of flyers, healthcare clinics, and community organizations, with an emphasis on local organizations serving older adults living with HIV and immigrant or refugee populations. These organizations facilitated access to participants from diverse linguistic, racial, and cultural backgrounds, helping to ensure that the study was inclusive and reflective of the community. In-person recruitment meetings were offered with translators present as needed, and community partners played a vital role in building trust and bridging connections between researchers and participants.
Data collection
This study used one in person arts-based workshop with 2 creative sessions to explore the healthcare experiences of older adults living with HIV. Led by an artist, a master’s-trained researcher, and a co-facilitator with lived experience, the session provided a safe space for creative expression. Consistent with the interpretive approach, the facilitators emphasized relationship-building, mutual respect, and responsiveness to participant needs throughout the workshops. During each session, participants were encouraged to engage in a range of artistic activities, such as drawing, painting, or colouring, which were intended to reflect their personal experiences, resilience, and identity in relation to living with HIV. While translators were offered to participants, all participants opted to participate in the arts-based workshops in English. No translation was requested or required during the sessions.
At the conclusion of each session, participants were invited to reflect on their experiences. They shared their thoughts on how the arts-based approach impacted their understanding of their own experiences with aging and HIV, as well as how it influenced their emotional well-being. These reflections were captured through both group discussions and individual narratives to the research team. The facilitator probed participants by asking open-ended questions designed to encourage deeper reflection and exploration of their experiences. The facilitator also emphasized non-verbal and creative expressions, which provided an opportunity for participants to share their experiences without relying solely on language skills. Some of the questions included: (a) ‘What emotions or memories did you experience while engaging in this activity?’ (b) ‘How did the art-making process help you express things you may not have been able to share through words?’ (c) ‘How did participating in this session shape your understanding of aging with HIV within the current healthcare context?’ and (d) ‘How can arts-based methods help communicate your experiences in healthcare settings to researchers or with healthcare providers?’ These probing questions were developed by the research team prior to the session as the facilitator was encouraged to support participants in reflecting on the connection between the creative process and their personal narratives. This approach aligned with the interpretive paradigm by valuing participants’ subjective meanings and supporting an iterative process where participant responses could shape subsequent questions and areas of exploration. Reflections from participants were captured through both facilitated group discussions and individual narratives written or shared verbally, clarifying how individual narratives were derived.
During the sessions, two research team members took detailed field notes, documenting verbal contributions, group interactions, and observations of the creative process. We had approximately four pages of notes per session. Immediately after the sessions, the principal investigators, research assistant, researcher with lived experience, and the facilitator debriefed, sharing preliminary interpretations. These debriefings were informed by an interpretive lens, attending to emerging meanings, contextual influences, and group dynamics that shaped the knowledge produced during the sessions.
Data were securely stored in encrypted digital files, and access to these files was restricted to the research team via an online server. Physical data (e.g., written consent forms or hand-drawn art pieces) were stored in locked cabinets, with access granted only to authorized personnel. We also ensured that all data collection materials (i.e., art-based expressions) were anonymized and could not be traced back to individual participants. After data collection, participants were invited to share their art with the research team if they wanted.
Data analysis
The data from the arts based session discussions and participant reflections were analysed using qualitative content analysis, as described by Graneheim and Lundman (Reference Graneheim and Lundman2004). The sessions were audio-recorded and transcribed verbatim, and these transcripts, along with participants’ written responses collected during the sessions and the participant-created artwork, formed the primary data for analysis. The analysis began with an initial reading of the transcript of the session, observing and interpreting the participants’ artwork, and reviewing written responses to gain a general understanding of their context and content (Graneheim & Lundman, Reference Graneheim and Lundman2004). This initial immersion allowed the research team to become sensitized to the tone, rhythm, and emotional cadence of the data, laying the groundwork for a reflexive and iterative process of interpretation. Researchers paid particular attention to silences, contradictions, and emotionally charged expressions as potentially meaningful dimensions of the participants’ narratives, consistent with a commitment to honoring the complexity of lived experience. This was followed by the identification of meaning units, which were defined as segments of text that shared a common meaning or context related to the participants’ thoughts on their experiences in the arts-based session (Graneheim & Lundman, Reference Graneheim and Lundman2004). Field notes taken during the sessions were also reviewed and integrated into the coding process to provide context for verbal and artistic data, including group dynamics, interactions, and non-verbal expressions. Coding was conducted inductively to stay close to the data, with codes emerging from the participants’ own words whenever possible. Next, the meaning units were assigned descriptive codes. These codes served as labels that captured the essence of the content of each meaning unit. After coding, the codes were grouped into sub-categories based on shared themes. Coding was performed by a qualitative-trained, female research assistant, using NVivo software (Welsh, Reference Welsh2002). The coding process was closely supervised by two senior researchers (KMK and LS), who independently reviewed a subset of transcripts, field notes, and artwork to ensure consistency and rigour. Sub-categories and broader categories were discussed and refined during team meetings that included the coding research assistant (SP), the senior researchers (KMK and LS), and a researcher with lived experience of HIV who participated in the workshops (Graneheim & Lundman, Reference Graneheim and Lundman2004). Throughout the process, five members of the research team had numerous meetings to discuss the identified meaning units, codes, sub-categories, and categories (Graneheim & Lundman, Reference Graneheim and Lundman2004). The five members of the research team also discussed the coding and emerging ideas to the visual data. For example, in the case of the artwork, attention was given to the symbolic representation of themes such as resilience, identity, and experiences of stigma, noting how the creative process conveyed emotions and narratives that might not have been expressed verbally. The artwork was analysed not only for its thematic content but also for the use of colour, form, and composition, which may have symbolized deeper emotional or cognitive responses to living with HIV. The team meetings were also guided by principles of reflexivity and intersubjectivity, allowing researchers to surface and critically examine their own assumptions and biases while striving for interpretive depth. The interpretive paradigm informed the coding process by emphasizing the need to remain open to multiple interpretations and to prioritize the participants’ own language and framing of their experiences. These discussions ensured that the analysis was thorough and consistent (Graneheim & Lundman, Reference Graneheim and Lundman2004). After the data were analysed, the remaining research team members, who were involved with the whole study but data collection, were invited to review the findings. This review aimed to verify that the analysis accurately reflected the participants’ experiences. After analysis, all remaining team members who were involved in the larger study but not in direct data collection reviewed the findings to verify that the analysis accurately reflected participants’ experiences. Following this review, all authors agreed that the findings comprehensively represented the data, including both verbal and artistic expressions.
Results
The study included 11 participants and one peer researcher, aged 50–74, primarily from urban settings in Toronto. Most participants were male (67%), with a diverse ethnic background, including those from African, Asian, and European descent. The majority (58%) spoke English as an additional language. Participants had varied educational backgrounds, with 33% having some college or university education and 25% holding a high school diploma or less. Many participants reported co-morbidities such as high cholesterol (58%), chronic pain (33%), and mental health disorders (42%). A range of disabilities, including sensory, mobility, and mental health impairments, was also present among participants. None of the participants had engaged in arts-based research prior to this experience.
In the following section, we expand on the three key themes identified through our analysis of the arts-based research sessions: Reclaiming Narratives, Community and Connection, and Personal and Artistic Growth. These themes reflect the diverse and impactful experiences shared by participants as they engaged in the creative process. To further illustrate these themes, we provide participant quotes and source the quote by study ID, sex, and age.
Theme 1: Reclaiming Narratives.
The theme of Reclaiming Narratives was identified as numerous participants described they were able to use positive images of art to challenge and redefine the traditionally negative healthcare narratives surrounding aging and living with HIV. Participants noted that much discourse around HIV and healthcare often focuses on the struggles, poor health outcomes, and stigmatization faced by older adults living with HIV, contributing to a narrow and deficit-focused view of their experiences. However, participants in this study used the arts to shift these narratives, emphasizing the positive aspects of their healthcare journeys, such as illustrating images of hearts or connections. Participants noted that in creating art, they were able to illustrate meaningful connections they had formed with healthcare providers. Many participants highlighted instances of compassionate care, affirming their worth and dignity as individuals. One participant explained ‘Some nurses, as soon as you walk in they know you have HIV. But here, the elements of arts say a lot. We’re remembering that we are hearing positive stories, we have hope’ (Participant 2, Male, 73 years old). As noted in field notes, this comment was made while the participant gestured towards a drawing of overlapping hearts, which the participant described as representing ‘being seen as a person first’. In this statement, the participant contrasts the negative assumptions some healthcare providers make upon learning about their HIV status with the positive, hopeful environment created by the arts-based session. The participant suggests that while certain healthcare professionals may judge or stigmatize based on their HIV diagnosis, the art-focused approach allows for a more affirming and hopeful experience.
The process of engaging in art was seen not only as a form of self-expression but also as a pathway to healing and self-discovery. One participant remarked, ‘The diversity and use of art – it went from clinical data to more emotion’ (Participant 3, Male, 62 years old). This statement underscores how the art-making process transformed the clinical, impersonal aspects of their healthcare journey into a more emotional, personal experience. The participant reflects on the shift from traditional medical approaches to a more human-centred, expressive exploration, illustrating the power of the arts to evoke and articulate feelings that might otherwise remain unspoken. Through the use of visual metaphors (e.g., hearts, interconnected shapes, light, and colour), participants actively reframed these narratives towards hope, dignity, and relational care. Fieldnotes documented repeated references to ‘connection’ and ‘care’ as participants explained their artwork to the group.
Another participant shared, ‘Just go and put your pride away. We’ve all done this. We’ve all wanted to get feelings out’ (Participant 10, Male, 54 years old). This quote speaks to the vulnerability required in the creative process, suggesting that engaging with the art required participants to let go of their hesitations and embrace the shared experience. This statement was made during the group reflection period and was captured in field notes as a moment of shared laughter and affirmation, suggesting a shift in perceived power and relational distance between participants and the research team. The mention of ‘pride’ was interpreted by the research team as a sense of discomfort or resistance that many may feel when confronting difficult emotions or discussing personal challenges, yet the art-making space encouraged participants to move past this barrier. Through this collective, creative process, participants were able to find emotional release, build resilience, and support one another in their journeys. The arts provided a unique platform to express and confront the emotional toll of aging with HIV, fostering a sense of collective strength and personal growth.
Theme 2: Community and Connection.
The theme of Community and Connection was used to describe the value of group interactions in creating a sense of belonging and reducing isolation among participants. One participant expressed, ‘In this, I learned we [participants] are your [research team’s] people’, (Participant 10, Female, 58 years old) which speaks to the deep sense of solidarity and shared experience among the group. This quote reflects how the art-making space encouraged participants to see themselves in one another, creating a collective identity rooted in their common experiences of aging with HIV. Through these shared activities, individuals recognized their shared humanity, which not only reduced feelings of isolation but also cultivated a sense of camaraderie. Additionally, the connection was strengthened by the research team’s intentional approach to using art. Participants described that beginning sessions with art independently, rather than asking them to immediately share experiences, allowed them to gain comfort with the research team but also emotionally benefit from the session.
Likewise, another participant emphasized the therapeutic nature of the experience, stating, ‘It’s therapeutic – it should be implemented wider. We connected but also thought alone with ourselves’ (Participant 6, Male, 68 years old). Participants described that they were able to find a balance between connecting with others and exploring their own inner thoughts and emotions. The group dynamic facilitated mutual support, but each individual was also empowered to reflect on their own experiences, making the process both communal and introspective.
Additionally, a participant commented, ‘It makes us think and then express. We aren’t just talking to talk’ (Participant 12, Male, 57 years old). Participants highlighted how the arts-based approach encouraged participants to engage deeply with their emotions and thoughts before expressing them. It was not simply a casual conversation but a thoughtful process that encouraged meaningful reflection and communication. The arts allowed participants to articulate their feelings in ways that were more thoughtful and deliberate, creating a more meaningful connection with themselves and with others.
Theme 3: Personal and Artistic Growth.
The theme of Personal and Artistic Growth was used to describe participants’ description of how they used the arts-based research process as both a means of self-expression and a tool for reflecting on their journeys of aging with HIV. One participant reflected, ‘I learned the elements of art say a lot’ (Participant 11, Male, 61 years old), emphasizing how creative expression helped them process emotions and reframe their narratives in a more positive light. For some, this process also sparked newfound pride in their identities, both in relation to their ethnic backgrounds and their lived experiences as aging individuals with HIV. Another participant noted that they were ‘Not every day an old gay guy’ (Participant 12, Male, 57 years old), reflecting on how their artwork gave them the space to embrace and celebrate aspects of their identity that they may not have always been encouraged to express openly. This self-acceptance, bolstered by the creative process, strengthened their sense of self-worth and personal agency.
Beyond self-expression, participants also highlighted how the research process encouraged critical thinking and problem-solving. The use of artistic ‘probes’ helped guide their reflections, with one participant explaining, ‘The probes help a lot’ (Participant 4, Female, 56 years old). This comment followed a prompt asking participants to consider what their artwork communicated about aging with HIV. Many had not expected to live this long, and the creative process helped them find meaning in their longevity. Some even discovered a new hobby in art, seeing it as a way to continue expressing themselves beyond the study.
Importantly, several participants commented on the emotional impact of sharing their work in a group setting, which created opportunities for mutual witnessing. The presence of peers with shared lived experiences fostered a sense of solidarity, validation, and emotional safety. For some, hearing others’ stories helped them recognize their own growth; for others, the act of being seen and affirmed in their artistic expression offered a powerful counter-narrative to the stigma and invisibility they often felt in broader society.
However, participants also encountered challenges in this journey. Some struggled with self-doubt, questioning whether they were ‘good enough’ to engage in artistic expression. Others found it emotionally taxing to revisit difficult memories through creative work, as art made their experiences more tangible.
Discussion
This study explored the role of arts-based research in understanding the healthcare experiences of older adults living with HIV, a population that often faces stigma, social isolation, and age-related health challenges. Traditional research methods may fail to capture the complex, lived realities of older adults living with HIV, making arts-based approaches a compelling alternative. Participants were older adults living with HIV currently residing an urban Canadian setting who participated in a series of arts-based workshops designed to facilitate creative expression, peer connection, and reflection. Participants were invited to use various mediums, including collage, painting, and storytelling, to explore their experiences with aging, health, stigma, and identity. The workshops were co-facilitated by community-based researchers and an artist, with a focus on trauma-informed, anti-oppressive principles. Participants used visual and narrative practices to reclaim meaning, build connection, and develop personal and artistic growth – processes we report as the three themes: Reclaiming Narratives, Community and Connection, and Personal and Artistic Growth. Findings revealed that arts-based methods provided a powerful avenue for self-reflection, emotional expression, and empowerment, helping participants articulate experiences that they may not have otherwise shared. Participants highlighted the therapeutic value of the creative process and its potential for enhancing patient–provider communication. These insights underscore the need for more person-centred, inclusive healthcare approaches that recognize and validate the voices of older adults living with HIV, demonstrating that arts-based research can be an effective tool for advocacy, education, and policy development.
Our findings build on existing HIV literature by demonstrating how arts-based research offers a unique avenue for older adults living with HIV to articulate their experiences of aging, stigma, and resilience. Specifically, our theme 1 (Reclaiming Narratives) illustrated how participants used visual metaphors and colour to reframe healthcare encounters from deficit-focused stories to ones emphasizing dignity, hope, and relational care. Our study contributes new insights by showing that arts-based methods not only allow for the expression of stigma-related experiences but also foster a sense of community and self-reflection. This is particularly relevant in the context of HIV, where stigma intersects with ageism and chronic illness, further complicating healthcare interactions and social relationships that impact health (Brown & Adeagbo, Reference Brown and Adeagbo2021; Furlotte & Schwartz, Reference Furlotte and Schwartz2017). Research in other study populations has shown that arts-based research can enhance psychological well-being, reduce feelings of isolation, and provide a non-verbal means of communication for individuals with physical or cognitive limitations (Chiang et al., Reference Chiang, Cheong, Cordato and Smerdely2024; Sullivan, Reference Sullivan2010). While prior literature has explored the therapeutic benefits of creative expression in aging and chronic illness, our findings highlight how art functions as a form of health communication, enabling participants to articulate complex medical and psychosocial needs in ways that traditional clinical encounters may not fully capture. This extends existing HIV literature by demonstrating that creative practices are not only beneficial for emotional well-being but also serve as an active strategy for agency and self-advocacy in healthcare settings. Future research should explore how different arts-based modalities (e.g., visual arts, performance, digital storytelling) shape participant narratives and whether certain methods are more accessible or meaningful for diverse populations of older adults living with HIV.
We interpret several processes observed in our data as suggestive of empowerment, but note that this is an interpretive reading rather than a measured outcome. Participants’ reports of reclaiming visibility, naming emotions through art, and experiencing peer validation are interpreted as processes commonly associated with empowerment in participatory and arts-based work (Witkowski et al., Reference Witkowski, Valerio, Samad, Matiz-Reyes and Padilla2021), yet participants did not use the term ‘empowerment’ explicitly. While our data suggest processes consistent with empowerment (e.g., identity reclamation, increased voice within the group), we recommend that future studies measure empowerment directly as a primary aim.
Our data show that arts-based activities supported participants in articulating experiences that were difficult to say in words within the research setting. Thus, our findings highlight the power of art as a tool for self–communication; it is crucial to ensure that arts-based research is not used in an extractive manner. Researchers must be mindful that creative expression should not become a means of forcing participants into self-advocacy but rather a method for truly understanding their lived experiences. Scholars have urged through the decolonizing of research by moving towards a model of culturally inclusive research approaches that prioritize relationality, reciprocity, and community-driven knowledge production (Igwe et al., Reference Igwe, Madichie and Rugara2022). Arts-based research should serve to centre the voices, histories, and lived experiences of participants in ways that are meaningful to them (Igwe et al., Reference Igwe, Madichie and Rugara2022). This involves developing culturally inclusive research approaches that recognize art as a legitimate form of knowledge production, particularly for communities of older adults living with HIV who may have historically been excluded from traditional research narratives. By integrating participatory arts methods such as storytelling, visual art, and performance, researchers can co-create knowledge with participants rather than impose external frameworks (Seppälä et al., Reference Seppälä, Sarantou and Miettinen2021). Additionally, ensuring that findings are shared in accessible and culturally relevant ways fosters reciprocity and challenges Western notions of expertise (Igwe et al., Reference Igwe, Madichie and Rugara2022). Ultimately, arts-based research must be a tool for empowerment, allowing for authentic representation while ensuring that researchers remain accountable to the communities they engage with (Seppälä et al., Reference Seppälä, Sarantou and Miettinen2021). Thus, it is essential for researchers to consider factors such as time, expertise, financial and technical resources, as well as the community’s needs and level of readiness (Flicker et al., Reference Flicker, Danforth, Wilson, Oliver, Larkin, Restoule, Mitchell, Konsmo, Jackson and Tracey2014; Strand et al., Reference Strand, Albany, Buthelezi, Hambaze, Lemahieu, Magwaza, Rivers, Swartbooi, van Vught and Snow2024; Switzer, Reference Switzer2019).
For many older adults living with HIV, narratives of trauma, stemming from systemic discrimination, healthcare marginalization, and the psychosocial impacts of long-term HIV survivorship, are often buried or silenced (Brown & Adeagbo, Reference Brown and Adeagbo2022; LeGrand et al., Reference LeGrand, Reif, Sullivan, Murray, Barlow and Whetten2015). Trauma literature has emphasized that traditional verbal or clinical forms of inquiry can retraumatize participants or fail to create the emotional safety required for disclosure and healing (Kaminer, Reference Kaminer2006; Mujumdar et al., Reference Mujumdar, Pierson, Briceño, Cummer, Hemal, Golden, Tanner and Schafer2020; Stevens & Tighe Doerr, Reference Stevens and Tighe Doerr1997). In contrast, arts-based approaches are increasingly recommended in trauma-informed research for their ability to engage participants on their own terms, support emotional regulation, and create non-verbal avenues for expression and processing (Golden, Reference Golden2022; McMahon et al., Reference McMahon, McGannon and Zehntner2024). This can be especially valuable in contexts where trust in institutions, including research, may be fragile or fractured due to historical harm. In this way, arts-based research can foster not only safer participation but also opportunities for transformation, opening pathways for identity reconstruction, community connection, and a reassertion of voice for older adults living with HIV that is not confined to traditional academic or clinical norms.
Importantly, arts-based research also facilitates a shift in power dynamics (Van Wolvelaer et al., Reference Van Wolvelaer, Van Steenberghe, De Maeyer and Vindevogel2022). Rather than positioning the researcher as the sole interpreter of meaning, arts-based methods encourage participant agency and co-construction of knowledge (Van Wolvelaer et al., Reference Van Wolvelaer, Van Steenberghe, De Maeyer and Vindevogel2022). This is particularly significant in community-based participatory research, where control, choice, and collaboration are essential components of ethical engagement (Melro & Ballantyne, Reference Melro and Ballantyne2022). By inviting older adults living with HIV to lead how and what they express, arts-based research fosters a sense of safety and autonomy – critical elements for those whose experiences may include medical disenfranchisement or social invisibility. Furthermore, the final artistic outputs can serve as vehicles for advocacy and public engagement, amplifying marginalized voices and promoting community education in ways that traditional academic outputs may not reach (Barone, Reference Barone2013). When thoughtfully designed and facilitated, arts-based research can shift power dynamics, enabling co-researchers to move beyond the role of participants to become active agents in knowledge production and dissemination (Strand et al., Reference Strand, Albany, Buthelezi, Hambaze, Lemahieu, Magwaza, Rivers, Swartbooi, van Vught and Snow2024). These creative expressions, when rooted in community experiences and collaboratively produced, can extend the reach and impact of the research by translating complex, place-based knowledge into accessible formats that resonate across audiences. As such, the value of arts-based approaches lies not only in their potential to inform governance but also in their capacity to foster meaningful, horizontal partnerships across diverse ways of knowing (Strand et al., Reference Strand, Albany, Buthelezi, Hambaze, Lemahieu, Magwaza, Rivers, Swartbooi, van Vught and Snow2024).
Limitations and future research
Participants were required to speak English, potentially excluding non-English speakers, and were only recruited from Toronto, Ontario. This limits the transferability of findings. Although efforts were made to recruit participants who spoke English as an additional language, language differences could still have been a barrier for some participants in fully expressing themselves or understanding the facilitators’ prompts. The study design involved a one-time arts-based session, which may not fully capture the long-term impact of arts-based research on participants’ healthcare experiences. A longitudinal approach could provide deeper insights into how engaging with the arts affects participants’ ongoing healthcare narratives and emotional well-being over time. Participants may have been influenced by the facilitators’ professional roles or perceived authority, impacting the openness and authenticity of their engagement with the art-making process. Furthermore, participation in this study required individuals to be able-bodied enough to engage in the creative process, which involved visual, auditory, and manual tasks. As a result, older adults living with HIV who experience significant vision or hearing impairments, or who have limited dexterity or mobility, may have been excluded. This limitation highlights the need for future research to explore more accessible arts-based methodologies, such as tactile or auditory-focused approaches, to ensure broader inclusivity for individuals with diverse physical abilities.
Future research could also examine the long-term effects of arts-based interventions on participants’ healthcare experiences, mental health, and overall well-being. Longitudinal studies could provide a deeper understanding of how creative expression influences ongoing self-advocacy, healthcare navigation, and relationships with providers. Furthermore, expanding participant demographics to include non-English speakers and individuals with varying physical abilities would offer a more inclusive perspective and help identify specific barriers to engagement in arts-based research across diverse aging populations living with HIV. Future studies should also investigate how different art modalities (e.g., performance, digital storytelling, tactile art forms) influence participants’ experiences and whether these methods provide more accessible or meaningful ways for different subgroups of older adults with HIV to engage with their own narratives. Additionally, research should explore the scalability and sustainability of arts-based interventions in healthcare settings, considering how these approaches can be integrated into routine healthcare practices to enhance patient–provider communication and improve care outcomes. This includes exploring how arts-based methods can be utilized by healthcare professionals to better understand the needs of their patients and how they can complement traditional clinical practices. Collaborative partnerships between artists, healthcare providers, and community organizations will be essential in co-developing accessible and culturally appropriate arts-based interventions. In addition, we did not collect data on the length of time participants had been living with HIV. As a result, we were unable to examine how duration of diagnosis may have shaped participants’ experiences of aging with HIV or their engagement with the arts-based workshops. Future research should consider capturing this information to explore potential differences across stages of the life course and illness trajectory. Finally, future studies could evaluate the impact of arts-based research on broader social change, such as shifting public perceptions of aging with HIV and challenging stigma within healthcare systems. By doing so, arts-based research can continue to serve as a transformative tool for advocacy, empowerment, and the creation of more inclusive and person-centred care models for older adults living with HIV.
Conclusions
This study explored the role of arts-based research in understanding the healthcare experiences of older adults living with HIV, a population that often faces layered forms of stigma, social isolation, and age-related health challenges. Traditional research methods may fail to capture the nuanced and deeply personal experiences of this population, particularly when it comes to emotional, relational, and identity-based dimensions of care. Arts-based methods offer a compelling alternative by creating a space for participants to represent their realities in multimodal, creative, and agentic ways. Findings from this study revealed that the arts served not only as a vehicle for emotional expression but also as a transformative tool for personal growth, collective solidarity, and healing. Participants used creative expression to shift dominant narratives, often reframing their experiences away from deficit-based discourses of decline and stigma towards ones centred on strength, dignity, and connection. This ‘reclaiming’ of narratives emerged as a key process by which participants reasserted control over their own stories, health journeys, and identities. The arts created a platform where moments of compassionate care, personal pride, and community belonging were not only remembered but also honored and amplified. In doing so, the arts-based space functioned as both a site of emotional processing and political resistance, disrupting the silencing and marginalization that older adults living with HIV often face within healthcare systems and broader society. Furthermore, this research underscores the relational power of the arts. Participants consistently emphasized the importance of shared experience, collective reflection, and mutual witnessing. While individual expression was central, so too was the co-construction of meaning with peers and facilitators. This dynamic affirms that healing and identity reconstruction do not occur in isolation but are often cultivated through relationships rooted in empathy, recognition, and shared vulnerability. Importantly, participants valued the facilitation strategies that centred their comfort and agency – such as beginning with independent art-making, using gentle creative prompts, and providing space for both solitude and social exchange. These findings point to the importance of thoughtful, trauma-informed facilitation when designing arts-based research with historically-marginalized communities. As healthcare systems seek to become more equitable and person-centred, integrating the arts holds promise not only for understanding complex lived experiences but also for transforming them.
Open access
