Using photovoice to investigate patient experiences of lupus nephritis in Canada

Introduction

Although lupus nephritis (LN) is the most common severe manifestation of systemic lupus erythematosus (SLE), affecting 25%–60% of patients,1 understanding of the lived experiences of patients with LN is limited. A recent interview study of Canadian patients with LN found participants reported substantial impacts on daily life from the unpredictability of living with LN, heavy treatment burden and lack of individual patient and societal LN awareness.2 Although semistructured interviews provide a valuable approach to explore illness experiences, other qualitative approaches (eg, focus groups) allow participants to share their experiences and build on others’ perspectives through group interaction3 4; focus groups can therefore elicit a richer understanding of the broad psychosocial impacts of LN that may not emerge in interviews alone.5

Using a social constructionist perspective (an approach that prioritises the subjective experiences of illness6), we employed focus groups and an innovative photovoice exercise to explore the experiences and perspectives of individuals with LN. Photovoice is a visual–narrative participatory research method that prioritises patient-lived experiences through photos and related narrative, whereby participants take photographs about a meaningful issue that can be difficult to articulate with words alone.3 Photovoice centres the participant in the research; this offers participants autonomy and helps elicit the nuanced experiences of those living with a health concern.3 Although photovoice has been used to explore experiences of chronic conditions such as rheumatoid arthritis,7 SLE,8 diabetes,9 food allergy10 and mental illness,11 to our knowledge, no studies are using this method to explore patient experiences of LN.

Methods

Patients from the SouThern Alberta Registry for Lupus EryThematosus (STARLET) cohort were recruited to participate in a photovoice exercise and accompanying focus group. Consecutive patients with lupus seen by rheumatologists in Calgary are invited to participate in this observational STARLET cohort (n=426); all patients receive care through a multidisciplinary clinic environment at the University of Calgary Lupus Centre of Excellence, and are also cared for by primary care providers and other specialists in the community. Those ≥18 years of age with biopsy-proven International Society of Nephrology/Renal Pathology Society pure Class III, IV or V or mixed Class III/V or IV/V LN12 and fulfilling the 1997 revised American College of Rheumatology13 or 2012 Systemic Lupus International Collaborating Clinics14 Classification Criteria for SLE, were recruited for this study. To ensure maximum variation, individuals were purposefully sampled with a range of sociodemographic characteristics and various LN-related disease characteristics.

Participants were invited to attend an online information session that provided photovoice guidelines and covered ethical considerations of taking photos in the research process.15 Specifically, participants were asked to take photographs over 2 weeks showing: (1) what LN means to them; (2) how LN impacts their daily life; (3) factors that impact how they manage their LN.

Participants were asked to choose 3–5 photos that were most meaningful to their lived experiences of LN. Participants sent these to the first author (FSC) before the focus groups. Three participants included photos (n=4) captured from the internet to represent their experiences; these visual representations were discussed in the focus groups, thematically analysed16 17 and are discussed in the results, but have not been reproduced in the manuscript.

During the focus groups and modelled on a previous photovoice study,18 participants were asked to describe: (1) what the photo was and where it was taken; (2) why the photo was important to understanding their experience of LN; (3) if they have any suggestions to improve the issue/challenge highlighted in the photo.

After describing each photograph, participants had the opportunity to share reactions, perspectives or experiences related to others’ photographs.

All participants provided verbal informed consent to participate in the photovoice exercise and have their photographs and anonymous quotations published. Two focus groups were conducted: one in March 2023 (n=6 participants) and another in April 2023 (n=7 participants). Focus groups were conducted via Zoom video conferencing. The focus groups were audio and video recorded and lasted 81 and 77 min, respectively. Both were led by FSC, who has extensive experience in qualitative research.

The focus groups were transcribed verbatim for subsequent thematic analysis using NVIVO for Mac. Transcripts were proofed and coded by FSC. Theme codes were developed deductively based on the results of previous semistructured interviews,2 and inductively based on themes emerging during focus group discussions. All photos and transcripts were coded using the theme code set. If uncertainties in coding emerged, FSC met with other members of the research team (SJE and AEC) to ensure discrepancies were addressed before finalising the analysis. The number of photos fulfilling each primary theme and the number of mentions of themes and subthemes by participants are highlighted in the results.

Results

Discussion

This study used photovoice to explore the experiences and perspectives of individuals with LN. This participatory approach aimed to elicit perspectives that may not have emerged with interviews alone; while broad themes related to the unpredictability of LN and the heavy treatment burden are consistent with results from previous semistructured interviews,2 the use of photographs accompanied by narrative highlights the unique aspects of living with LN. Specifically, the psychosocial health burden of altered life trajectories, the dual burden of LN and the associated medication journey, and the conflicting role of the physical environment emerged as critical components of the LN experience.

Respondents reported a substantial psychosocial health burden associated with the altered life trajectories that can accompany an LN diagnosis. While activities that contribute to well-being were emphasised, the physical, emotional and lifestyle impacts of LN and the associated medication journey serve as frequent reminders of the disease burden, both now and into the future. While quantitative studies demonstrate adverse mental19 and emotional outcomes20 21 in those with active LN, the qualitative literature exploring the emotional burden of living with LN is limited and will be explored in our future work. Participants also shared memories of their lives pre-LN, emphasising the need for flexibility from themselves (eg, understanding lifestyle may differ from original career/family expectations), as well as others (eg, friends, employers) to manage the demands of daily life with LN. The complex nature of relationships with family and friends was highlighted in this context. While the therapeutic benefits of socialising were identified, other emotional impacts were attributed to relationships, including feelings of social exclusion, reminders of family planning challenges (eg, through spending time with family/friends’ children) and feeling a responsibility to family/friends to maintain health. Similar tensions (eg, balancing the need for social connection against physical symptoms22) have been recognised in the SLE,23 LN2 and chronic illness literature,22 as both the therapeutic nature of engaging with social networks24 and the impacts of chronic illness on relationships with peers, partners and family2 23 25 26 have been identified.

The dual burden of LN symptoms and the associated medication journey emerged in both focus groups, echoing previous qualitative studies on patient experiences of the medication burden associated with LN2 and SLE.23 27 28 All participants had taken an immunosuppressant or biologic at some time during their disease course, and while participants acknowledged the need to control their LN through medication, side effects were identified by ten participants as they described medication-related symptoms that impacted both physical and emotional well-being (eg, self-esteem). Medication-related financial challenges were also highlighted by five participants, which has been documented in the qualitative SLE literature23; the uncertainty of insurance coverage and associated psychosocial burden was described, and one participant reported changing medication due to cost. The physical and psychosocial burden associated with the medication journey highlights the need for improved accessibility to existing, and additional, medication-related resources and support (eg, insurance plans with higher annual caps, broader public funding of medications) and treatment options that can better meet patient needs. Although all participants were receiving care in a publicly funded healthcare system in Alberta, Canada, some medications used in LN treatment (ie, mycophenolate mofetil, mycophenolic acid, belimumab, rituximab) are not consistently covered by public funding as it varies across provinces and access can therefore be challenging.

Most (n=12) participants discussed activities that contribute to well-being, and the role of the physical (eg, natural, built) environment was highlighted. Characteristics of the natural environment that contribute to well-being were discussed, particularly related to the physical and emotional healing properties of spending time in nature. This is consistent with results from the only other photovoice study of patients with SLE (though not necessarily LN); participants in this study (available in abstract form) described aspects of their urban neighbourhoods and the importance of greenspace when sharing their lupus experiences.8 Further, while not specific to LN or SLE, there is a growing literature on the therapeutic benefits of exposure to natural environments29–32 and how they can positively contribute to physical activity participation and reduce disease burden31 33 for those impacted by chronic illness. Alongside clinical treatment protocols, other non-clinical nature, social or cultural-based interventions (eg, that use natural assets such as forests34 to deliver health and social support32) should be considered to improve physical and psychosocial health for those with LN.

Conversely, participants also identified challenges presented by the built environment in both a photograph and open discussion (eg, rounded doorknobs in public spaces), emphasising the conflicting role of physical spaces for individuals with LN. Although an extensive body of work exists on the relationships between the built environment and health,35–38 with the exception of osteoarthritis39 there has been limited work on how those with rheumatological diseases experience the built environment; while we know that neighbourhoods (eg, poverty,40 socioeconomic status41) can impact health and well-being outcomes in SLE, to our knowledge LN or SLE patient experiences of the built environment have not been explored in previous qualitative studies, emphasising the value of pairing photographs with narrative in this work. Considering the needs of those with chronic illnesses such as LN is critical when planning future policy changes that influence how public spaces are shaped to improve accessibility.

This research has significant implications that could improve care and well-being for those with LN. For example, better use of shared decision-making approaches by clinicians may help address the medication-related challenges expressed by participants. Other initiatives such as improved access to insurance guidance, employment accommodations and mental health and other social supports could help improve patient well-being. While these supports cannot fully address the identified challenges expressed here, lupus community stakeholders (eg, healthcare providers, lupus advocacy organisations) can play a critical role in advocating for both the development of new supports and better access to existing initiatives that can improve the well-being of individuals with LN.

This study has limitations. First, results may not fully reflect the experiences of individuals with LN as we recruited from a lupus specialty clinic in one geographical region of Canada, and many are comanaged in a multidisciplinary setting with rheumatology and nephrology. While we aimed to include participants with diverse LN experiences and demographic backgrounds, our sample included primarily those of Asian or white race and ethnicity and individuals who had completed postsecondary education. However, we included patients with varying severities of LN, as 23.1% had required dialysis and 15.4% had received a renal transplant. Next, while data generated from two focus groups are not generalisable, our aim was to provide an in-depth exploration of the LN experience. Further, some of the experiences that participants attributed to LN may have been due to extrarenal manifestations (eg, photo B (table 2) depicts SLE-associated Jaccoud’s arthropathy), comorbidities or medication side effects and not LN per se, emphasising the unique and complex experiences and management challenges of patients with LN. Finally, ensuring that photographs and narratives are presented in a way that accurately portrays the participants’ experiences42 is challenging; to ensure consistency and credibility in interpretation of themes, the research team met throughout the analysis to discuss findings.

Alongside evidence from semistructured in-depth interviews with those with LN,2 results of this study not only draw attention to the unique physical, emotional and lifestyle impacts of LN and the associated medication journey, but will inform the development of meaningful and effective strategies that target the outcomes most relevant for patients with LN.